canisgallicus

Two roads diverged in a wood, and I –

I took the one less traveled by,

And that has made all the difference

Robert Frost

1874-1963

Life is a journey with many twists and turns.  Some people are dealt a hand of cards that throws up so many obstacles it becomes hard to imagine.  For me the word is ‘imagine’ and what I constantly refer to is that mental box that exists for me.  I sought and seek so often to explain to others what this is but never convey its reality and impact on my day to day life and the necessity for constancy and routine.  The “Box” as I refer to as my consciousness, I have so often written about, not knowing if I was able to convey the meaning.  Regrets, maybe it is just pure selfishness or maybe there are reasons, I have only a few of them.  I am to busy trying to live the day I am within, with no imagination going forward, and amnesia related to past memories, and all I retain is few memories without the autobiographical function that applies to most people.  Eleanor Rose (mum), in her feisty 86 years of fearless life asked me to go to Co. Clare, that she would drive the 140 miles and we could stay in Ballyvaughan; visiting those places we so often visited in my childhood and beyond; meeting with relatives and old friends.  I said No; it was that hideous fear that prevented me from this opportunity of a holiday with my mum, sharing the old stories, thinking about those who I deeply loved and who have passed on, over the decades.  Maybe this was meant to be because it gave my niece Molly the opportunity of having a holiday with her grandmother and learning a little about her life and that of our family.

Traumatic brain injury significantly changed my life and in particular the relationships I had with family and friends; my marriage did not survive it either.  I constantly seek knowledge as to what it is that brain damage does and because of the impact on memory I am forever trying to pass on the information to others especially KT who is ‘Mensa’ and seek reassurance that they understand.  Mum as a general practitioner, a real country doctor for over 60 years was the person I most wanted understanding from and that never seemed to be possible.  Only once, in deep anger Rose said to me “I know about it; my mother sustained a brain injury as did Uncle James who was a lawyer” (my grandaunt Emily Blake-Forster died from a horse riding accident also and this was enough said.

Am I religious?  No.  Rose has given me many sets of Rosary beads and little seeds of wisdom about the importance of having a belief system.  I constantly said that all my family and friends who had passed on are continually with me.  Ironically, now Rose is there.  I can’t visualise these people but in September of this year, as I have written about in Chapter 10, my curiosity was to follow a journey that lead me to Professor Adam Zeman, University of Exeter, a doctor who named the condition Aphantasia in 2016.  Is this Eleanor Rose saying to me, I now understand and I leading you in a direction to help me understand what I so often try to explain without the ability to really comprehend myself?  You will have to be patient with me as I try and connect the reader with this extraordinary path provided.  The coincidence moves one stage further with the name Eleanor Maguire and for two reasons; Eleanor as my mum’s name but Maguire is the name of Jim Maguire, my psychiatrist, who became a friend but most importantly a mentor.

The marvels of the internet age is that deficits can be challenged and you can engage in a virtual world that connects you direct to the source, therefore this reply is a real treasure for me.  The wonder is that this eminent Professor took the time to reply to me as follows:

Dear Michelle,

Many thanks for your message.

We have much to learn about this still, but I promise to remain curious about it!

Best wishes,

Adam

September 5th, the day after my visit to St Vincent’s Private Oncology for my second last Herceptin infusion, I received the first response from Professor Adam Zeman, University of Exeter Medical School, Devon, UK, with four links.  As an activist mainly through writing emails in relation to the poor provision of mental health services in Ireland, I was very surprised to receive such an informative and inclusive reply from Professor Zeman, Exeter University, with an apology for a delay in replying, due mainly to the volume of mail he receives.  He said it would be helpful to the project if I could contribute some more information.  I answered the two questionnaires.  The first one was a well-established test of imagery vividness known as the VVIQ; the second questionnaire explores your personal experiences of imagery in more detail.  Respect and engagement of the patient is essential and so often in the elitist field of medicine is lacking.  To consolidate the connection through my email to Professor Zeman and his reply, they asked for confirmation that I wanted them to keep me informed about future updates.  Aphantasia was only named in 2016 and it is possible to assess the progress of the work via the Eye’s Mind Study website: http://medicine.exeter.ac.uk/research/neuroscience/theeyesmind/

These findings are gathering considerable momentum and for me personally I am relieved because traumatic brain injury and its effects form such a part of the great unknown and you are constantly side-stepped because brain injury has invisible/silent symptoms and what is so very real a deficit to you as a person with brain injury, is glossed over with the reassurances by the medical profession, academics and people in general,  who with professional authority, state that every brain injury is different which leaves you further in the darkness of your reality. I have countered this by knowing one reality of what happened with the brain injury, I was left completely deaf in my right ear so for me this is one tangible that I know, and it reassures me that other deficits apply too. Now Aphantasia, coined by Professor Zeman in 2016, gives substance to what the Mind’s Eye entails.  I cannot imagine.  As I read all that is available on the internet, I can identify with what is researched.   This in turn for some people with brain injury, it is about acceptance and providing other mechanisms of coping.  Medical research now more than at any other time can tap patient engagement by the simple use of an email and a reply.  The global media coverage, on Professor Zeman’s research, resulted in more than 10,000 people worldwide, coming forward to be involved.

The internet, youtube, TED talks, Nobel Prize Org, Harvard or just googling the word ‘Aphantasia’ and the term which was coined by Professor Zeman in 2016 is described as “the lack of ability to summon imagery to the mind’s eye, as we do when we count sheep or visualise an absent relative.”  In doing so, he gave voice to people whose experience differs from that of friends and family.  My mum past away Christmas 2017, at a time this Mind’s eye research was nominated for “Oscars” of Higher Education (Times Higher Education Awards 2017).  I cannot visualise my Mum or remember meetings every week.  However I can say that amnesia and the inability to form memories has one positive advantage, I have little recall of breast cancer and what I know to be in place, as described by Professor Crown as ‘the sledgehammer to catch the fly” approach, for one year now.  KT constantly reminds me but I rely on him too and his extraordinary memory to add normality to my day. This concept of people who cannot visualise was first identified by Sir Francis Galton in 1880.  It has taken over 120 years for it to receive the attention it merits and this is from the engagement of what first must have been a concept to research to findings by Professor Zeman and his team.  To give significant endorsement of what this finding called Aphantasia is, I will quote Blake Ross, the Facebook technology innovator who founded Firefox:- http://www.independent.co.uk › News › Science

Blake Ross wrote how his “mind was blown” when he discovered he had Aphantasia.  In his Facebook blog that was shared over 15,000 times, he said it explained what he had always experienced as being “stupid-smart” – intelligent at many tasks but lagging behind when visual memory was involved.  He wrote the discovery of aphantasia was “as close to an honest-to-goodness revelation as I will ever life in the flesh.

To me, aphantasia tells me stop trying to explain to others.  The gratitude list idea of Ariana Huffington, Huffington Post http://www.theatlantic.com/technology/archive/2018/01/does-counting…/549638/ is another great gift and add to this the routine that KT helped me create.  KT recognised that I needed on a daily basis a routine, the constant reminders, the limitations of actions, the importance of going out every day, the essential of keeping my curious mind active and for this there were books, magazines, conversations with different people, watching comedies on the TV (films are beyond my memory capacity, sequence can be difficult and then amnesia means you forget).  Conversations are particularly difficult for me, I tend to state words based on facts but the sequence can often be a problem especially if I am tired and KT comes to the rescue and puts the story together.   Yes ‘Stupid Smart’ is the paradox.  KT has ensured at all times that the computer is the foundation of each day, noting that emails give me information within the day, this in turn enables me to write on topics which the technique of using pre accident memory, most likely my teenage years and childhood, to compose emails which most often relate to social injustice.  The discovery of Twitter has in 2010 opened up such a vista … because I can use it to augment my memory.  This is done by other people with brain injury also.  For us, Twitter becomes are own version of artificial intelligence.

Twists and turns, well here comes another for September 2018 and perhaps it is my mum saying now she understands.  Earlier on I highlighted the name Professor Eleanor Maguire http://iris.ucl.ac.uk › IRIS and the associations with both names.  Trawling through all the newspapers, there was a glossy magazine enclosed.  It was the 2018 UCD publication.  What caught my attention was the heading “Exploring the human brain” on page 34.  Eleanor Maguire was named as one of “Twenty Europeans who changed our lives” http://alumni.ucd.ie/awards/awardees/2016-awardees/.  Eleanor Maguire, a UCD graduate, has been prolific in breakthroughs in the understanding the human brain.  If you have an interest in this area of neuroscience, I recommend this 2014 lecture http://www.youtube.com/watch?v=gdzmNwTLakg

Her research proved that patients with amnesia cannot imagine the future.  Her other research breakthrough was on London taxi drivers, observing their brains are more highly developed than their fellow citizens.

Immediately I was captivated by amnesia and not being able to imagine the future.  But added to this was the concept of spatial.  In my prior life, I had no problem with spatial memory.  It was this loss that caused me such frustration and upset and then in turn it caused such anxiety and fear leading in the early years to agoraphobia even to the point that I would not go out onto the balcony of the apartment based on fear.  I returned to live in areas that I had pre-accident memory consolidation.  Holidays became such a traumatic events for me because I just could not get spatial organised in my head.   This all consuming fear most likely was the reason I could not go on that last holiday with my mum and I was unable to overcome the fear.

I had to make contact with Professor Maguire to find out if she could even give me some links to help me understand her research.  Professor Maguire, Wellcome Trust Principal Research Fellow and Professor of Cognitive Neuroscience at the Wellcome Trust Centre for Neuroimaging at University College London http://www.fil.ion.ucl.ac.uk/ where she is Deputy Director, took the time to reply to me as follows:

Dear Michelle

Thank you for your email.

I attach a paper we wrote on this topic a few years ago – it has some technical jargon in it it, but hope the gist is still clear.

Kind regards

Eleanor Maguire

Professor Eleanor A. Maguire

University College London

Professor Maguire heads the Memory and Space research laboratory at the centre.  In addition, she is an honorary member of the Department of Neuropsychology, National Hospital for Neurology and Neurosurgery http://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN, Queen Square, London.  Ironically in 1993 it was Jim Maguire, psychiatrist, who when I sustained the brain injury recommended I attended the only neuropsychologist in Ireland at that time – and perhaps this is part of ‘making all the difference’.

I have transcribed this link 2013  http://www.youtube.com/watch?v=gdzmNwTLakg; it helps me to better understand the content and I have to say it is essential for people with brain injury; their medical teams, their advocates, their carers  to watch this.  The research relating to London taxi drivers is fascinating and especially in the case of the taxi driver findings where he had brain damage.

You may ask why the brain?  Why not?  Too often I have heard the word ‘secondaries’ or metastatic cancer and although in my case breast cancer was identified and dealt with early, you realise if you talk to other people with cancer that while they often have remissions the cancer tumours still come back and now that we live longer, it becomes more probable.  I have known of several people where the secondaries relate to brain cancer and like pancreatic cancer, it is acute and terminal.  The brain in the case of stroke, traumatic brain injury, and cancer depending where the tumour is, can throw up all kinds of hidden outcomes and it helps if you understand and this is why this is included.

I include a piece from the Abstract  titled Mind-wandering in people with hippocampal damage by Cornelia McCormick, Clive R. Rosenthal, Thomas D. Miller and Eleanor A. Maguire Journal of Neuroscience 12th February 2018 http://doi.org/10.1523/JNEUROSCI.1812-17.2018 which is relevant in my case.

Two prominent features of mind-wandering are mental time travel and visuo-spatial imagery, which are often linked with the hippocampus.  People with bilateral hippocampal damage damage cannot vividly recall events from their past, envision their future or imagine fictitious scenes.   This raises the question of whether the hippocampus plays a causal role in mind-wandering and if so, in what way?

Having the opportunity to research people (all males) with bilateral hippocampal damage for several days, they examined for the first time what they thought about spontaneously, without direct task demands.

Findings:  Controls thought about Past Present and Future, imagining vivid visual scenes, “hippocampal damage resulted in thoughts primarily about the present comprising verbally-mediated semantic knowledge”.

…”However, hippocampal damage changed the form and content of mind wandering from flexible, episodic, and scene-based to abstract semanticized, and verbal.”

The findings expose the hippocampus as a key pillar in the neural architecture of mind-wandering and reveal its impact beyond memory, placing it at the heart of our mental life.

For me, I feel so ecstatic to have in writing the foregoing because I wholly identify with these findings. As a person who is the service user, the patient, the person whose life was significantly changed beyond comprehension as a result of sustaining a fractured skull in a horse riding accident, daily I seek reassurance.  The personal trauma for me resulted in much frustration, anxiety and depression, chronic fatigue and now breast cancer but it also had a significant impact for family and friends also.  Long ago and far away people who had a brain injury were often referred to as having had a personality change, part of which often included those closest to them, be it spouse, family, friends being embarrassed by the dis-inhibited behaviour especially if part of the dis-inhibited phase resulted in the revelation of all that was deemed secret within the family.  As I have said before.  My marriage ended in an acrimonious divorce.

Traumatic brain injury, bipolar, anxiety, breast cancer, and dementia.  Fear is a component that runs deep within and it delves so deep it into your emotions that it is a prominent factor in how you live your life daily and within that strict routine, stepping of life is just one step from the brink.  My mum really understood this fear and how it haunts me because she knew first hand from the early months that passed into years of the outcome of traumatic brain injury which involved constant falling; very poor balance; aphasia dis-inhibited behaviour and speech, often talking about the past which should have remained hidden.  This link provides clarity and details of what is the silent aspect of brain injury and especially how I fear the onset of an early dementia related to TBI and now the fear that if the cancer spreads that it would be to the brain http://www.traumaticbraininjury.com/symptoms-of-tbi/severe-tbi-symptoms/.  Mum knew that for me having early onset dementia would mean that I would want to walk off this stage called life.  My preference would be death rather than dementia; it hard enough to survive with dense amnesia.  The ‘Schrodinger at 75’ forum was held in Dublin, Ireland, in September 2018 and I gained some re-assurance.  I did not attend but Anthony King, The Irish Times, reported on the Early Diagnosis of Alzheimers Outlined http://www.irishtimes.com/…/spatial-tests-could-reveal-early-sign-of-alzheimer-s-says… at the ‘Schrodinger at 75’ forum and the importance of how initial detection is key to treating disease.  Every day I find ways of trying to manage forgetfulness and so far it has worked well for me and has been outlined many times in this book.  The routine is rigid.  It is basic but then too much ‘fluff’ confuses me and that is not a good place to be and fear then further complicates it.

We are back to the importance of ‘Spatial Awareness’ and how simple tests could allow clinicians to spot early indications of Alzheimer’s disease.  Herein is another twist or turn to understanding for me.  Professor John Keefe (I highly recommend that people especially those with brain injury, cancer, stroke, their carers watch Professor O’Keefe’s youtube lectures particularly when he received the Nobel Prize for Medicine http://www.nobelprize.org/prizes/medicine/2014/okeefe/facts/).  Again I have transcribed the youtube talk and can identify with his findings and research at a deeply personal level. Professor O’Keefe, a neuroscientist at University College London (UCL), told the conference that early detection was critical for treating this disease, since Alzheimers as we now understand is believed to start decades before patients are diagnosed.  Professor O’Keefe is renowned for discovering “place cells” in the brain.  These cells start firing off signals once we are in a place.

Teamwork between such cells allows us to build a mental picture of, for example, a new city we visit, Professor O’Keefe explains further, “The idea of a place is an abstract concept that is created by the mind itself”.  What is important here is that this map is created in a part of the brain called the hippocampus (and we now know and we need to explore further that Alzheimers disease starts in this part of the brain.

Multimorbidity: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30941-3/fulltext

To update health-care systems in the face of the increasing burden of multimorbidity will require a shift for physicians from specialists to generalists, likely through changing payment models to incentivise improved patient outcomes… Another shift will be greater patient technology to support self-management of conditions. Integrating care in creative ways, such as treatment centres for multimorbidity clusters (for example, hypertension management within HIV clinics), could provide other scalable options.

Multimorbidity is a challenge that we all face as we live longer.  I fall into this category and have engaged where possible with technology to enlighten me.  To add yet another twist.  Youtube has provided me with great support in particular since I was diagnosed with breast cancer through the connection with music of my era.  At this moment in time I am listening to Frailty (Sting and Stevie Wonder) which is so appropriate, empowering and soothing when discussing multimorbidity http://www.youtube.com/watch?v=gnZgNYoZkeU. In earlier years I wrote a lot on depression (diagnosis Bipolar) but this book relates more specifically to the impact of a brain injury and and laterally breast cancer (with much illness in over two decades). You may ask why in this final chapter I am so entrapped with the brain which is because as a consequence of traumatic brain injury I have derived so many anomalies that neuroscience especially since the 1990’s is on elevation towards just how important the brain is.  To return to the words twist and turns I read an article of major significance recently by Sylvia Thompson, Life Sciences, Irish Times  http://www.irishtimes.com/…/science/how-tuning-in-to-music-can-stimulate-the-brain… about the importance of tuning in to music which can stimulate the brain.  I have written previously about fear and its impact on your sense of being human.  Add to the power of music which conjures up different emotions, those historic memories before the brain injury, fond memories of childhood and so much more which you encounter when it is dense amnesia is the outcome of a fractured skull.

Another academic who kindly replied to my email. 

Thank you Dr Catherine Jordan, neuroscientist, who is Atlantic Fellow at the Global Brain Health Institute in Trinity College Dublin whose research is music and memory.

As an Atlantic Fellow for equity in  brain health.  Dr Jordan has a specific mandate to seek social and public-health solutions to reduce the scale and impact of dementia….

Researchers have found that playing a musical instrument engages motor, auditor and visual parts of the brain which results in more grey matter – the clusters of neurons in the brain and spinal cord.  “Music engages higher order congnitive functions such as organising and monitoring and brain image have show a larger corpus callosum – the bridge between the two brain hemispheres – in musicians.”

Albeit a mere patient (person who suffers from Greek) or to be more commercial, a service user;  my experience tells me I must agree with the finding “Researchers have also found that musical memory is one of the last types of memory people with dementia lose.  It is also interesting that there is some theoretical evidence that suggests musical memories are stored in a different part of the brain to other forms of memory”.

Traumatic brain injury can leave you with a very simplistic view of life; partly explained by the foregoing but maybe therein are benefits too as encaptured in the quote of the remarkable Stephen Hawking

“I am just a child who has never grown up. I still keep asking these ‘how’ and ‘why’ questions. Occasionally, I find an answer.”

My last day for Herceptin infusion at St Vincent’s Private Hospital, 3rd floor, Oncology.  Professor Crown had given me the name of his researcher Karen Culhane because I explained that I had been writing this in book form on my WordPress site and wanted it to be published as a book with part of the proceeds being donated to Cancer Clinical Research Trust http://www.ccrt.ie/.  My assumptions were so simple but by the time I wThe Cancer Clinical Research Trust is dedicated to reducing the burden of cancer suffering through the development of improved treatment for cancer patients.orked out the process I had traveled all over St Vincent’s University Hospital.  The irony is that it never dawned on me to phone Karen (I had the wrong name too) but luck was on my side and I met a person who worked with Karen and all was solved when we met up at Centrepoint, SVUH.  You see, I operate like TT on the “A” roads with all that goes in between having no existence in my grasp of what I do day to day.  I can hone in on Facts but details therein are the difficulties.  Karen told me about the Caroline Foundation http://thecarolinefoundation.com/about-the-foundation/ where a father and step mother have undertaken to raise e1 million for research for CCRT.  The Cancer Clinical Research Trust is dedicated to reducing the burden of cancer suffering through the development of improved treatment for cancer patients.  Conscious as I am of all the scandals related to charities in Ireland, I was pleased to hear that Professor Crown, also former Senator, Dail Eireann), runs a “lean” research trust for cancer incorporating UCD and DCU.  Karen said Professor Crown will make a contribution too.

Beautiful piece written by Gaynor French in the Irish Examiner concerning Dignity in Death; I cannot add any more words to what is contained herein but I share so Gaynor’s views http://www.irishexaminer.com/breakingnews/ireland/i-have-lived-with-dignity-i-want-to-die-with-dignity-838693.ht

“More may have been learned about the brain and the mind in the 1990s – the so-called decade of the brain – than during the entire previous history of psychology and neuroscience.” ~ Antonio Damasio

Hope is a powerful word and sometimes it can leads to what is awesome.  The Nobel Prize in physiology or medicine:-  http://www.sciencenews.org/blog/science-ticker/cancer-immunotherapy-wins-2018-medicine-nobel-prize

James P. Allison of MD Anderson Cancer Center in Houston and Tasuku Honjo of Kyoto University in Japan have won the Nobel Prize in physiology or medicine for advances in harnessing the immune system to fight cancer.

All previous types of cancer therapy were directed at the tumor cell, but Allison’s and Honjo’s approach was to remove brakes that keep the immune system in check, unleashing it against tumor cells. These “checkpoint inhibitor” therapies have greatly increased survival of cancer patients and may produce even greater results when combined with traditional therapies.

“The brain is the organ of destiny. It holds within its humming mechanism secrets that will determine the future of the human race.” ~ Wilder Penfield

Age 12 my mother Eleanor Rose gave me the family signet ring in gold which can be used as a stamp (again of another era in time).  The title of this book is the motto

Fortuna Audaces Juvat

Fortune Favours the Brave

But therein what is essential is Courage

I am going to publish this and ask a question.  Is there anyone who can help me make this an Amazon book.  Hard copy was part of my plan but I feel given the content that the links are so important that I aim to remain on the internet.

Would greatly appreciate some assistance here…. Michelle

Henry Marsh

The Scoping Inquiry Judge Charles Meenan

Maybe DD

Immunotherapy

I still am wearing my hat but gradually a curly head of hair is appearing.  What is strange is that my hair previously was straight and quite grey but not this time.  I will have to wait a little longer to see if this will change.

I had thought of this chapter as the conclusion but somehow I am not quite finished.
Within this month of August I will attend St. Vincent’s Private Hospital, Daycare Oncology, Level 3, for my 2 pm appointment on 14th August 2018, for my infusion of Herceptin. This happens to coincide with an appointment for a mammogram at the St. Vincent’s University Hospital Breast Care Service, suite 4, 1st floor.  The appointment time was early at 8.45 am.  Thankfully, on the day,  I was one of the first patients there, as many people gathered in the waiting area for their appointments.  As instructed I presented the letter to the receptionist.  The mammogram machine awaited me with a young radiologist who was thorough, pleasant and kind.  All was complete by 9.30 am so I phoned Oncology to see if they could give me an earlier appointment so they suggested I arrive at 12 noon.  I always carry a bag and in it is a selection of reading material, it can be the Financial Times Saturday magazine or it may be a book I am reading or for that matter it can be clippings from the recent newspapers.  The main purpose being that it is essential that I am not bored.  I went to the coffee shop and had a coffee and read until it was time to go to Oncology.

I arrived at 12 noon at Oncology and joined other people in the waiting area until I was called for a weight, temperature and blood pressure check.  A nurse was assigned to me.  This was her second day back in Oncology after having had her 2nd child.  There is something refreshing when you are in what can only be described as a dismal setting to see the young nurses and to hear them talk about their children, their holidays and when there is a lull in the events of the day, to hear them chat and laugh while they are writing up their notes on patients for the day.  Today Professor Armstrong came to Oncology and you could see that there was genuine respect and that all worked as a team.  When you are on Herceptin there is a possible side effect to the heart so every so many weeks it is necessary to have a heart echo cardiograph.  I had forgotten where to go but the receptionist directed me to Cardiology; again there was no queue, the appointment system worked like clockwork and when finished I returned to Oncology.  The nurse had taken my bloods and the results were back, the echo results indicated an improvement and satisfactory.  I asked the nurse to give me my Vitamin B12 (cytamin) injection which she did.   I met with Professor Crown who is pleased with my progress to date and it was time for the infusion of Herceptin.  KT has been asking me when the treatment ends.  Asking questions I find difficult; I tend to be more solitary and seek answers through Google or reading.  Today I asked how many more treatments of Herceptin.  The nurse told me that I was on my 14th treatment and that it is probable that there will be three more, depending on Professor Crown’s decision.  KT was delighted that there was an end date; he has been a stalwart beyond my wildest expectations during this very traumatic time, especially for him as my confidant, carer and partner.  KT’s constancy has been so re-affirming and assuring.

I am awaiting the results of the mammogram and there is a hidden tension as we both re-affirm each other that all will be well, that the “Sledgehammer to catch a fly” approach of Professor Crown’s Oncology team, means that there is no more cancer in the breast.  I have neglected my teeth over the last year but while washing my teeth, a filling (gold) so it must be in decades, fell out so I knew it was time for me to visit my special dentist Dr Dan at Smiles, Waterloo Road, D4.  Having arranged an appointment for 28th August 2018, I attended.  Thankfully KT had reminded me to take the filling because it was decided to either remove the tooth or try re-inserting the filling, which Dr Dan did.

Wednesday 29th August 2018:  It was time for Phlebotomy department at St. Vincent’s University Hospital for my lithium and other bloods.  Fortunately, when I phoned the day before and explained that I had an appointment at St Vincent’s on August 29th, they had a vacancy.  Bloods complete I had time to put in.  I rambled around the main area of the hospital; the Irish Cancer Society have a Daffodil centre where there are brochures and trained staff to talk to people about cancer; it is an excellent service.  I have mentioned before about appointments and people not attending.  At long last HSE bureaucracy are engaging in trying to make patients take some responsibility and there are signs on the walls about how important it is to attend appointments.  Private patients tend not to miss their appointments and there is no reason a patient who has been given a medical card by the HSE should be negligent.  An appointment costs the State money and awareness by both public and private patients makes the health system work in a systemic way and ensures costs are kept to a minimum.  The notice main points are as follows:-

St. Vincent’s University Hospital

• Help reduce our hospital waiting time.
• Here at St. Vincent’s University Hospital a total of 18,234 patients did not attend “DNA’s” their appointments.  “DNA’s are ‘did not attend’
  
• Telephone numbers are provided for operations switch; bone and joint department; and diabetes centre
• The costs to the HSE:  e1,458,700  (which works out at e80 per patient). 

Awareness tells us that attitudes need to change.  We need to understand that if we do not attend an appointment, there is another person who is in need of that appointment.  People must be held responsible that if they have chosen to ignore an appointment, they are depriving another of access to medical treatment.  To prevent another person on a waiting list having the earliest appointment possible is morally wrong especially when we know an earlier appointment could mean the prevention of a fatal diagnosis/prognosis and a treatment programme.  It is about changing the attitudes of people and valuing the time allocated by the HSE staff.

It was time for coffee but the coffee machine was broken so I decided to put in the time by going over to Merrion Shopping centre for a coffee and to read a magazine until it was time for my next appoint at the Breast Care Service, Suite 4, 1st floor.  Again I had forgotten where to go to and ended up back in the mammogram department.  A little life learning was awaiting me.  I was standing behind a man about 40 years old.  He was the next in the queue and looked unusual given that this was the mammogram department.  Then voices were raised.  The two women behind the counter tried to calm him down but he became more irate, shouting at them and using foul language.  There seemed to be no sense to it but then for him and for the staff it was their reality.  One woman phoned security and a middle aged man arrived and he placated the man – he knew his name.  Another security man arrived and they left with the man.  The two HSE women handled it so well and with great tolerance and patience.  After the event, they were stunned but thankfully this is not an everyday experience.  It is important to note that men can also have breast cancer.

For me, they read my letter and I was in the wrong department.  I inquired again and was directed to another suite so I arrived and the receptionist ushered me and other patients to seats because we were ahead of time.  Then we were asked to form a queue; there was about 20 people there at the 2.30 pm appointment time.  Then we were called up and details were input into the computer.  The date of birth appears to be the core data that identifies each of the patients providing the back up details of your address, your general practitioner, your phone number; whether you hold a medical card or have private health insurance.  All you have to do is present the letter and the data is there to be on the HSE computer system to be confirmed by you.  I was called by the doctor (foreign) almost immediately;  he brought me to the examination room and told me that mammogram showed no signs of cancer.  He then did an examination of my breasts (using his hands).  He called in a person to be present as he did the examination. I explained that the breast operated on was tender but he assured me that did not mean that there was cancer present.  As soon as the examination was over I phoned KT who by the time I arrived home had made contact with all to tell them the positive news.  There is something so powerful in childlike expressions of joy by grown up people when something as serious as cancer is a threat to their lives, both their present and their future.

Apartment living can be a very interesting way to live.  The shared doorway into the block means you meet your neighbours and over time you have chats and exchange experiences.  A lot of the apartments in our block are rented out and often to foreigners.   Meeting people from other countries often gives you different perspectives; the Turkish family with three small children who had little English still could express kindness with a hug and the same can be said of the young Indian family with one child.  Everybody has come forward and have been so kind and understanding.  It is impossible to thank those who have been there with such support and compassion; all I can do is go to the quotation that sums up what is so true in life:

No kind action ever stops with itself.  One kind action leads to another.  Good example is followed.  A single act of kindness throws out roots in all directions, and throws out roots in all directions, and the roots spring up and make new trees.  The greatest work that kindness does to others is that it makes them kind themselves.  Amelia Earhart.

My journey with breast cancer is nearly over.  Perhaps I am premature in thought to say that the breast cancer no longer exists when I know what you become once you have had cancer, is a cancer survivor. It will be necessary to be watchful and engage with check- ups for all the years going forward from now.  Each time I visit daycare Oncology and I listen to the stories of other people, I realise that for most it is a question of time.  Some people have been cancer free for 15 years and the cancer appears again and they are back in treatment but also we do know that there are far more survivors than years ago.  I so well remember the patients in my parents’ dispensary practice who would present with unknown symptoms that would result in a referral to a consultant and who if it was a cancer diagnosis, would be operated on with, a response “Open and Close”.  It was so ruthless then, it was the dreaded word called Cancer and imminent death.  I was a child then and I can remember so well going out on the calls with mum or dad and knowing that injections would be given to ease the pain and suffering of patients diagnosed with cancer.  Sometimes the husband or wife would have engaged in that paternalistic culture in medicine of that era and they would ask the doctor not to tell their spouse that it was cancer; and this happened and I remember often wondering did the person really know that they were dying?  I knew cancer could apply at any age; it might be a child you would hear about or it could be teenagers.  I remember two teenagers on separate occasions who had to have injections morning and night every day and the reason I recall this is that my mother, no matter who she was visiting, would leave early to ensure the young person had the injection (they were given twice a day at 9.00 am and 9 pm), no doubt the injection was a pain killer.  Because these young people were close to my age at that time, I would always ask about them in the hope there would be a reprieve and that they would recover.  In those days, it just didn’t happen.  I remember one teenager who said ‘no more treatment’.

As I sit here writing this I my mind is wandering back to the 1970’s and 1980’s and to all the people I once knew, most of them very young, some with young children, who were diagnosed with cancer but who often would say enough treatment and their choice would be a passing as peaceful as possible with sufficient morphine to ease their passing.  By the 1980’s thankfully there was greater medical intervention so people could remain in their homes. The Irish Hospice Foundation and the availability of proper palliative care gave people a dignity in their imminent death. My mum, based on her experience as a GP, encouraged people to remain at home with their families and I often recall going out on late night calls and mum would always refer to the community spirit that made people engage and share with each other to help the person and their family as they moved on from this world.  The Irish Hospice Foundation made so many advancements in this personalised treatment for patients approaching death and at the end of life.  At my mum’s funeral; people who came to offer their condolences reminded me of their loss of loved one’s especially those who died from cancer.

While in hospital in Zimbabwe, I recall with horror the screams of the patient dying from cancer in the room next to me; it is this that tells me healthcare equality is essential.  For my mum, she must have found it very hard to know her only daughter had cancer; she was so upbeat but then performance was always her star quality.  Ironically, KT shares this quality with Rose so I really do not know what deep down in his heart he feels about this last year; like my mum, I probably will never know but what I do know is that each and every day, morning and night, anger and peace, crisis and calm, clarity and chaos, KT has been there at my side telling me I will survive this interlude with breast cancer.  Jackie, Teresa and Julena, KT’s brother-in-law, sister and daughter have been a constant; as have Charles, Jane, Aine, Ide, Val and Ned with many prayers and masses said and a constant source of reassurance and sound advice. David, KT’s nephew, called to see us recently and I know I can always phone him; David is special because he talks in facts; you know if you ask him a direct question, he will answer it.  I am looking forward to going to Mayo to meet the people who have been so supportive in the near future.

Communication is essential.  They talk so much about ‘fake news’ these days but embellishment of the truth goes to the very core of being human; some of us talk facts while others embellish.  The key however is about discernment.  Social media has created another tier in communication and especially for people who have ill-health.  My choice is Twitter for my virtual community engagement.  Twitter friends may be people I will never meet; they may live in different continents but there is a level at which we can communicate and that level might be the connection of cancer, brain injury, mental health, or just politics and social activism, but the core fact is the acknowledgement that these people have come forth in the media to try and improve the lives of others.  Presently I interact with Laura Brennan and Vicky Phelan (I have written about Vicky in an earlier chapter), both exceptional in their efforts to support others.

Laura has been on the TV, on radio, social media including Twitter advocating how important it is for young people to avail of the HPV vaccine.  It is too easy when you are young to ignore warnings about cancer; life is fast, youth is intoxicating but in the case of Laura, she is young but she unfortunately has a terminal case of cervical cancer.  Laura’s message is clear and it is essential to be aware that science confirms in America that cervical cancer is almost fully eradicated.  In the words of the scientist who developed the HPV vaccine, Professor Ian Frazer, the public health programme in Australia is so successful that it is expected that within 10 years, no women there will be have cervical cancer.  There is much controversy about giving people vaccines but there is good reason to heed the findings of Professor Ian Frazer, by considering the following:

The HPV virus causes cervical cancer as well as other cancers in men and women and it can be eradicated by public health programmes similar to the one against polio.

…A study conducted in Australia in 2007 found that no woman who had taken part in the country’s screening programme over the period examined died from cervical cancer.  The 80 women who died from the cancer during the period studied had come from outside the country or had not gone for screening as recommended.

Laura Brennan is the voice of experience and speaks as a young woman with a terminal disease called cervical cancer and people need to listen to what she is saying.  Parents need to ensure their children get vaccinated against HPV infection under the national immunisation programme.  This programme is only open to first year girl students in secondary school as well as to young men who have sex with men and young men and women who are HIV positive.  It is urgent that the Department of Health sanction this provision of HPV to young boys also.  MSD is the company that manufactures Gardasil, the HPV vaccine used in Ireland.  It is most distressing to note that when the immunisation was introduced in 2010 there was a near 90% up-take but following a campaign by people against the vaccine (often called anti-vaxxers, it fell to 50% up-take.  Laura Brennan from Co Clare who works in the cosmetics industry has appealed to  parents to have their daughters avail of the HPV vaccine at school.  Laura did not have this opportunity of having the vaccination because the programme did not exist when she was at school.  Add to this the necessity for HIQA to approve the vaccination for young boys and it can be sanctioned by Simon Harris, Minister for Health.  Thankfully the HSE have given some recognition to Laura for her bravery and the fact that there is a corresponding increase in the uptake.

We are challenged now to review the screening programme which is in place for a number of years now.  Some, like me, can say I am a breast cancer survivor, others can say they are living on borrowed time but what we must make ourselves aware of is that presently the CervicalCheck debacle is shouting out all kinds of dissenting views. Negligence cases, hungry solicitors/barristers and their no foal no fee advertisements are there ready to take on cases of women who have been failed by the National Screening Service, the HSE and their doctors.  We know that two cases have resulted in payments in excess of £7.5 million; we also know that there are a further 221 cases pending.  These cases relate to cervical cancer but we do not know what has happened in relation to breast check audits.  If the compensation pay-outs become exorbitant, then the National Screening Service as we know it (and we must accept that lives have been saved or extended by screening with many living on what they refer to as borrowed time) may be cancelled.  Already there is an avalanche of legal actions against CervicalCheck and BreastCheck,   Again it is necessary to state that this could result in the State being unable to undertake national cancer screening programmes and this means early stage breast cancer, as located by breast screening in my case, (there were no prior signs that would have alerted me to attend the doctor) will result in advanced levels of cancer that will more than likely have metastasized.  Ireland is now one of the most litigious countries after the United States for medical negligence claims and this poses a real threat as the Courts make awards.

Advances in Breast Cancer

Professor Afshin Samali, NUI Galway, is the lead in Irish research into triple negative breast cancer (TNBC).  These findings are also published in Nature Communications Journal. Irish researchers are in the process of developing a drug with potential for clinical use, “which not only improves the effectiveness of the initial chemotherapy treatment but also reduces relapse among women with this form of cancer”. A new strategy,  it is hoped could improve survival rates in breast cancer and in particular TNBC which accounts for 15% of all breast cancers diagnosed and is more commonly found in younger women.  What is interesting about this is that other breast cancers respond to targeted therapies but there are no targeted therapies for TNBC which is treated with chemotherapy which initially proves to be successful, but over time the results are that patients with TNBC relapse within one to three years of the treatment and the long term prognosis, according to researchers, is poor. Professor Samali, the director of Apoptosis Research Centre, said this study is the result of extensive laboratory experiments, analyses of breast patient samples, testing pre-clinical models of TNBC and collaboration with our international and industry partners”.  He went on to state that “the new era of precision oncology aims to tailor treatments to individual cancer patients and here at NUI Galway we are excited to identify a new therapeutic strategy for TNBC patients who are most in need of better treatment options“.  Dr Susan Logue reported that this landmark study was funded by Science Foundation Ireland making note of the fact that at present there is no selective therapy for triple negative breast cancer.

Again I return to the importance of community and especially for people like me with phobias and an embedded fear of attending doctors or asking about all too many, possibly even what others might consider as neurotic, health conditions.  The crisis unfurling from the Vicky Phelan settlement of £7.5 million and the absolute courage of Vicky and her family to speak out about the facts of the case and the lifting of the non-disclosure clause, gave me that necessary courage to accept that screening is available and that there is a responsibility as a human being to ensure that your health is a priority.  Living as I do in the Upper Baggot Street environs, the media reporting of the CervicalCheck scandal made me inquire at Well Woman Clinic, above Meaghers pharmacy.  The outcome was the doctor was there, there were no other patients, I had the code number from the National Screening programme so it was time to be brave and thankfully I did because then I had removed another fear especially since I had not engaged with CervicalCheck in the past.  BreastCheck for me proved to be an easier option so I have attended as requested for a number of years.  I have to say the receipt of a letter from CervicalCheck within 8 weeks as they specified I will share because it is reassuring because it is in writing and you just can’t forget!  The opening line thanks you for taking part in CervicalCheck.

Your cervical screening test taken on 24/05/18 detected no abnormalities.  Your doctor has received the result of your test.

The enclosed leaflet has information about screening test results.

It is important to understand that no screening test is 100% effective.  If, at any time, you have concerns or symptoms such as pelvic pain, irregular vaginal bleeding, spotting or discharge, you should contact your doctor without delay.

CervicalCheck will remind you about your next screening test in three years.  In the meantime, if you change your name or address, please contact the programme.

Thorough and the facts are stated that no screening test is 100% effective.  I am not sure if this is reported to St. Vincent’s hospital that is apart from me telling the nurse in Oncology so that it can be added to my file.

Good friends are a real treasure but sometimes life is like a sequence of train carriages, you move from one carriage to another and because all your energy is exacted on being or just hobbling forward, you lose contact with those friends of earlier eras, who remain deep in your heart but not in your life.  Maybe soon as I approach the last carriage, I will make contact again with special people.  I always wanted to maintain contact but I always hoped that my health would have been stronger and the rigid routine of groundhog day could be displaced to engage in what is a normal relationship between friends.  Not alone have I lost contact with friends but if my family members have not passed on, I have lost contact with family too.  I have read recently that as people who are dying when asked what they would change about their lives and many say that it was losing contact with friends throughout their life.  Good friends are Esther and Aidan who have been a constant while I have trundled along in this carriage of my life.  They know I write but when they realised I had been writing about my journey with cancer; they have been constant in their encouragement, making suggestions and advising me.

One of the suggestions is about Quackery and cancer.  As person who has walked deep into the forest with black dog and suicidal ideation; it is very hard for me to grasp that a person is clinging on to life, never wanting to die.  There may be neurological reasons for this because of the brain injury but basically everything revolves around 1 to 5 and life is like stepping off that carriage at destination unknown and alone.  Aidan suggested “Quackery”  and this is so very important.  People pray; others go to healers, more have masses said, or even travel to Lourdes, Fatima, or closer to home to Knock.  Then there are the people who look to the lotions and potions, to the health gimmicks that are sold for costly sums.  There are too many alternative medicine sources to mention.  The Times recently reported on the online gene test and the fact that it ‘could mislead about cancer risk’.   The company is 23andme, which is a service to allow people explore their ancestry through genes.  However, they have now offered a service to detect genetic variants linked to an increased risk of breast, ovarian and prostate cancers.  There are 5 million customers worldwide.  Their biggest markets are USA, Canada and the UK.  The important factor to be aware of and alert to is that it tests for only three variants in the BRCA1 and BRCA2 genes, most commonly found in the Ashkenazi Jewish population – it odes not includes thousands known to cause cancer risks.

There are fears that people may be “falsely reassured” by a negative result, having failed to understand the implications of testing for only three variants.

Paul Thiruchelvam, of Imperial College London, said: “Armed with these test results, this individual may not be as vigilant at looking for breast cancer symptoms as they should be.  They may have one of the many other faulty cancer genes the online kit doesn’t test for and they simply would not know.

“BRCA testing is used as a major selling point by 23andme…

…In the small print before customers buy the test, they are told: “The three variants included in this report are most common in people of Ashkenazi Jewish descent and do not represent the major of BRCA1/BRACA2 variants in the general population.

Mr Thiruchelvam,, who is a consultant breast surgeon, the decisions about what to do with a positive result could be “complex and stressful”, adding: “These types of test results require interpretation and benefit from counselling.

The Times, Saturday August 4th 2018

VHI offer Genetic Testing but it would involve an independent Oncologist.

Three more infusions of Herceptin and this experience of cancer and the intensity of treatment leads towards an end in sight.  It is now time for me to look beyond and make certain decisions and engage with a charity/charities that will derive benefit from my experience and hopefully the profits from a this book I have written since first diagnosed with cancer, following a free BreastCheck screening August 2017.

What is familiar to me is Professor John Crown, Oncology, 3rd Floor, St Vincent’s Private Hospital so for this reason I will look the charity that is closely affiliated and for this reason I have chosen Clinical Cancer Research Trial.

Breast check …. some people will not take them because of radiation.

To be concluded.

Last chapter

Month of September treatment

Charities Research CCRT

Professor Crown

Eleanor Maguire … memory as detailed in my note-book

Professor Zeman Aphantasia

Immunotherapy

3rd July 2018:  Time again to attend Oncology at St. Vincent’s Private Hospital, Dublin 4.  Mum was constant in her advice which was based on over 60 years practicing as a doctor (GP) that the only way you can deal with a cancer diagnosis is to be positive.  My Mum was acutely aware of my mental health history and how it had caused much illness and anxiety in my life.  A wise doctor who I meet out walking and of the same age as my Mum gave exactly the same advice – the message is the importance of being positive at all times when you have cancer  Thankfully there is a good team around me.  I regularly attend my psychiatrist, John Cooney, my GP Dr Peter Cahill and the constant in my life which helped me most when phobias and anxieties made interaction so difficult, Boots Pharmacy, Upper Baggot Street, and especially Seana.  Khalida and other members of the staff are also aware of my complex health need and are able to negotiate on my behalf to ensure that I have my medications in a blister pack, that I am reminded every three months to get my prescription and since I have been diagnosed with cancer, they have been exceptional in how they have helped me cope with the medications especially during the period I was receiving chemotherapy.  I must also add that Professor Crown, Professor Armstrong and the Oncology team, especially the nurses assigned to my case every three weeks have been professional, kind and caring.

Maria was the nurse assigned for the 3rd July visit.  She took my bloods and waited the return results before giving me the Herceptin infusion.  Thankfully there was no problem finding a vein.  The usual filling in of the chart was completed and I added that my hands had developed an orange colour, as a symptom.  Maria had never heard of this and I explained that I had checked up with Dr Google (she was not impressed with this) and I told her about my kidneys working at 70% and that orange hands can relate to this.  It was decided that the bloods would check up on the kidneys and later on after I had met with Professor Crown, Maria asked me if I had mentioned the matter to him and then she told me my kidney bloods were normal.  I was asked if I wanted to meet with Professor Crown and I said yes.  I then went to the corridor where people sat waiting to be called into see him.  I was prepared with my list (not my bucket list yet).  I started the conversation by congratulating him.  I had a little piece from the Irish Examiner newspaper dated 15th June 2018 which he read.  His humility explained this was a new venture:  The details

Professor John Crown has been appointed chief medical officer with OncoMark http://www.oncomark.com/ at NovaUCD http://www.ucd.ie/innovation/, the producer of a prognostic assay for early stage breast cancer.  A consultant medical oncologist at St Vincent’s hospital, he has published in clinical and translational breast cancer research.  He graduated from UCD Medical School 1980.  He trained in general medicine in Dublin and London.  He trained in oncology in Mount Sinai Hospital, and became a specialist in breast oncology in Memorial Sloan-Kettering Cancer Centre, New York.  He has led St Vincent’s oncology programme and was founding chair of the Irish Cooperative Oncology Research Group http://www.imagenow.ie/projects/cancertrialsireland

Having followed Professor Crown on Twitter long before I ever met him, in fact when he was in the Senate, I am including NovaUCD with Twitter as its entree to what NovoUCD is about. Twitter @NovaUCD and @ProfJohnCrown

Diagnosed with cancer – the unknown prevails leaving you vulnerable beyond comprehension (except for depression which I personally have found a far more harrowing burden to experience) than this diagnosis of breast cancer.  To read the above piece about Professor John Crown re-iterates that Ireland has some of the most qualified professionals in medicine and we should never lose sight of what this means to Ireland as a country.

The list:– I started with the orange hands.  Professor Crown did not dismiss it but professionally examined both sides of my hands and checked my eyes.  He was satisfied that nothing was wrong and that maybe I was eating too many carrots!  I then mentioned about my cholesterol being high and that it was recommended I start on Statins.  I explained I did not want another medication and feared that once taken I had to continue for life.  He reassured me many people take Statins and there are no real consequences to fear.  He said to consult with my GP.  The outcome is I am going to be taking Statins also.  The next question was about “Dense Breasts” – something I had found out about on the Twitter.  Again, reassurance.  This is relevant to younger patients.  As for the lower back pain, I don’t need medications, it is more an ache and relates to being tired, so this concluded the list.  I spoke with the Nurse who shares the office with Professor Crown, I explained I met Elinor and that I was really delighted that this was her final day.  I explained I had known Elinor since she was a young child and that she stayed with me in Zimbabwe, a long time ago, in what I call another life.  There is no need for Professor Crown to remember my name because he knows that communication will be a constant via the Twitter machine so he ends the conversation always with I will see you on Twitter.

There is something so grounding about Oncology, 3rd Floor St Vincent’s Private Hospital.  You are encouraged not to seek out other people with cancer and there is a good reason.  The short period of time in Oncology, there are a few opportunities when you get to talk to other patients.  What you very quickly realise is that cancer is not simple, it cannot be cured, it can go into remission and you will meet some patients who have had remission for twelve years only to wake up one day and find the cancer has returned http://www.cancer.gov/types/metastatic-cancer

The woman in the chair next to me was 75 years old; she had an operation three weeks prior to this visit and was due for another operation in the lymph glands in the next few weeks.  She and I do not know her name had a 12 year remission.  The woman I met while sitting in the corridor awaiting my visit to Professor Crown had gone for her 12 year check-up only to find that there was more breast cancer; but this time in the other breast.  The significance of this is that it makes me think I am destined to the remainder of life as a neurotic thinking that every ache, pain, skin change, headache, is registering that cancer is prowling and tumours are lurking looking for opportunities to manifest yet again.

This week I met with Dr Cooney, Psychiatrist; I explained about the Oncology psychologist at St Vincent’s Private Hospital on the advice of the Oncology nurse.  It was decided by both me and the psychologist that I had what I call the Groundhog day routine and that it worked to such a degree that I forget that I even have cancer each day.  Dr Cooney reviewed the medications and as Dr Martin said to me when he met recently ‘you are doing so well, make sure you keep taking the medications and especially the lithium’, it was decided to maintain the medications and add statins.   My next appointment is scheduled for November 2018.  I am confident if there is any crisis period for me I will have the back-up from Dr Cooney and I am aware that he understands totally the complications of being bipolar with traumatic brain injury and acute anxiety and now being treated for breast cancer.

The Will?  The Will to live – I have written about this in the past. Then there is the Last Will and Testament.  I can clearly return to my leaving certificate year in 1976, a year of turbulence and fear.  The fear was the secret that could not be discussed but the fear that said be brave, be a confidante to each parent but never to both because in unison was not possible.  My memory is like this.  Dad was no doubt doing his house calls and we were returning from Dunshaughlin, our nearest village, where Dad could buy his miniature Schimmelpennick cigars (Mrs Murphy always made sure to have them in stock for him and of course his newspapers, magazines, and on rare occasions she had his favorite Heinz tomato soup).  The dispensary system of medicine meant a considerable amount of driving and in those days dispensary doctors called to people in their houses because most people did not have a car.  I worried a considerable amount about my father’s health and I could see that he was troubled but there was nothing I could do to change his life but that did not stop my relentless worrying, which in retrospect I understand was an extreme anxiety disorder that should have treated.

It was a fine day and we were driving towards Dunshaughlin, Dad was driving his blue Audi car XAI 661 which he was so proud of, an indication of a prosperous ascent from being a publican’s son to being a doctor.  As we passed Murnane’s (1963 Dr Murnane retired and my father was appointed to the dispensary practice and the dispensary residence at Belper, Tara, Co. Meath) Georgian house on the main road, my father turned to me and said it was time for him to make a will.  I can remember the panic this instilled in me and I recall vividly pleading with him to forget making a will and what it implied as he was young and he was not going to die.  Yes, he did die in October 1977 and he did not leave a will and testament.  This meant he died intestate.  One Third would pass to his children and two thirds to his wife.

The Will 2018:  Let me sum it up in a brief sentence.  I being one of 2 children, the eldest, according to my Mum’s solicitor, am not entitled to view it.  KT encouraged me to get a solicitor to act on my behalf.  Three letters from him, a phone call, eventually this week (7 months since my Mum passed away) my Mum’s solicitor wrote to me stating that he was under no obligation to provide me with the will but that he was making a concession.  I am excluded in that a Trust will protect me for 20 years. I have said before that my Mum met me each week at the Westin hotel, near Trinity College Dublin, and that I was not invited home for over over a decade.  Perhaps, my Mum Rose, the doctor with much experience, knew best because her decision was made long ago and to be fair maybe she did not want me to recall what was once my home and haven in times of deep depressions.  Her home passes in its entirety to my brother from whom I am estranged.  So like my memories of recent times; all that is of my pre-accident memory of my home, is swept away with the dash of a pen and a signature that says ‘you need no memories of your home, of your Father, or of me.  It then goes on to say in 20 years time, if you happen to be alive, no provision is made for you, it is my son and his five children.

Liz a family friend, again from another life, passed away 1st October last year.  The strange thing is I had a list and Liz was first on my list to make contact with but I am such a procrastinator, I have failed over decades to keep in contact with old friends. My mum knew Liz since she was a small child and it was only a matter of time when we would both meet up with her but alas this did not happen.  Today I met with Paul, Liz’s husband, who so kindly came to the rescue on January 1st 2018 and brought me to my Mum’s funeral.  Kindness is so important and Paul through the decades I have known him remains kind.  We talked about mourning and the stages of grief.  I always believed that part of the grieving process of a child for their parent or a wife or husband in respect of each other, is to have access to their personal belongings so that if they choose they can give items of sentiment to friends and family or just immerse oneself in their reality of the now and reminisce and cry and this is part of the purpose of mourning the life of a parent, loved one, spouse, child.  Paul spoke so affectionately of a gift he bought for Liz of long sleeved gloves and a handbag; he had given to this to a lifelong friend of Liz, only last weekend.

24th July 2018:  2 pm I arrive at Oncology.  It was busy.  I felt relieved that this time I had no list of questions and that apart from fatigue, I was engaging in a positive way with life in general.  I even lost a little weight now at 78 kg so hopefully this will continue. Professor Crown met with me and he is pleased with my progress.  I have started on statins (high cholesterol) and notified them but completely forgot to mention that I had the cervical cancer result as normal.  It was a busy day for the medical team.  A few of us started discussing hair.  One woman wore a wig; another woman her hair was long and it had grown back – me I am still wearing a hat although my thin hair is re-appearing and now covers my whole head but there seems to be little growth yet that would suggest going to a hairdresser.  All went well.  There was no difficulty finding the vein and Donna (from Donegal) with such a positive attitude was my nurse for the Herceptin treatment.

26th July 2018:-  As I am writing I am listening to the powerful voice of Ella Fitzgerald which takes me away from dwelling on a situation over which I have no control and back to what is important and that is maintaining the Will to Live.  Curiosity and being stubborn are two traits that are deep down within my being.  I continue relentlessly to seek answers and of course Google and now I have discovered Google Scholar, these provide endless connections and possibilities.

Neuroscience is forever seeking and finding answers and today a TED talk led me to what could be a very valid reason for why a person who sustains a traumatic brain injury would try to describe to people that they have no imagination.  Today, I know Aphantasia http://en.wikipedia.org/wiki/Aphantasia was name chosen and defined to explain this in 2015.  This is of major significance to me because I am aware that I once used to visualise and most definitely had an imagination but became extremely frustrated after traumatic brain injury blaming memory deficits for removing the ability to imagine.  Absolutely unknown to me, the condition Aphantasia was named in 2015 by Professor Adam Zeman, Exeter University, UK. http://psychology.exeter.ac.uk/staff/index.php?web_id=adam_zeman    Daily I listen to TED talks or TEDMED and thankfully today on a random selection in my virtual world of reality I was introduced to this remarkable young woman Tamara Alireza http://www.youtube.com/watch?v=arc1fdoMi2Y who explains what this condition (now named Aphantasia) is and which in my case, 20+ years on from when I fractured my skull, makes me so relieved that it is not a craziness in my head but a reality that I can learn to work around and accept.   Now there is a sound reason to review deficits and a good place to start is why I am so afraid of the dark and the answer to this is apparent (I can’t visualise images; not even for counting sheep) http://www.nrtimes.co.uk/single-post/2018/01/24/When-the-brain-cant-visualise. My mind needs to be engaged during the day because I can’t day dream.  I need sleeping tablets at night having spent day reading, writing or engaging with Google.  Twitter has been an essential component of helping me cope with memory deficits and lack of holding an image in my ‘mind’s eye’.  Now I know what this condition is and it is yet another component part of the traumatic brain injury and how highly individualised each head injury is in how it affects you.  I have made contact with Professor Adam Zeman but no doubt this man will have so many emails from people that a response is unlikely.

I may not be able to visualise but I was thrilled to read an article by Sylvia Thompson, Irish Times 2nd August 2018 http://www.irishtimes.com/…/how-tuning-in-to-music-can-stimulate-the-brain-1.3575… about how tuning into music can stimulate the brain (back in my era I am listening to Aretha Franklin, who passed away just recently, Chain of Fools).  Yes it is my personal experience that music is a powerful asset and is a means especially in the case of traumatic brain injury of connection and therefore an enhancement to alter cognitive decline.  Trinity College Dublin I regard as part of the nucleus in relation to my progress.  I started in Trinity College Dublin as part of a research programme funded by Horizon EU Aware and Trinity College Dublin (Dr Margret Fine-Davis and Dr Mary McCarthy).  The research was about women who had depression and their re-integration into society.  Having been accepted into Business Economics and Social Studies, I struggled with much ill-health and all I can say is that I may not have received the Degree in 2003 but what I had was a true education and am a firm believer in lifelong education and especially for people with dementia or brain damage to prevent cognitive decline.  I was in Trinity College Dublin from 1996 to 3003, a long time, add to this lectures I have attended and the lectures at The Long Room Hub http://www.tcd.ie/trinitylongroomhub/.

I am a lifelong student of Trinity College Dublin but without qualifications.  My favorite song is Summertime and as I write I listen to so many versions on youtube and all I know is that it deeply resonates in my mood and emotional  and creative state.

To quote Sylvia Thompson, Irish Times.

Music and memory is the research interest of neuroscientist Dr Catherine Jordan http://www.gbhi.org/catherine-jordan/ who is an Atlantic Fellow at the Global Brain Health Institute http://www.gbhi.org/ in Trinity College Dublin…As an Atlantic Fellow for equity in brain health, Dr Jordan has a specific mandate to seek social and public-health solutions to reduce the scale and impact of dementia.

Jordan is keen to develop a network of researchers, music therapists and performing musicians to develop evidence on the links between music and memory in Ireland.

“Research into music and the brain is well established in other countries but it’s a new research area in Ireland,” she notes

The last few lines is pure music to my ears (one of which is completely deaf as a result of a fractured skull).  It explains the absolute excitement in my head if I am at a concert and I recognise the music and this is what draws me to Grafton Street to listen to the musicians play.

I suppose it is a social activism or willingness to engage in the everlasting search for answers that is my driving force and having had very deep depressions and generalised anxiety states, I need prompts to state life is not just one black hole when your eyes are closed and there is no other world to engage with or in.  I have written so many emails to minsters, senators, organisations, concerning mental health, suicide, social injustices, politics over the past 2 decades.  I can reassure you on my gratitude list at night I am so thankful the traumatic brain injury happened at that time in my life when I knew how to use the computer and then all I have had to do is adapt and engage.  Twitter is my daily engagement with augmenting my memory and making it possible for me to have conversations with a little knowledge about the news in the world around us; it basically up-skills those memory deficits to engagement within the day in world affairs.  Twitter and my adaptation of it is my route to Artificial Intelligence.

Another neuroscientist who I greatly admire is, Oliver Sacks, who sadly passed away 30th August 2015, from metastases of liver cancer but thankfully he lived to his early 80’s.  Again this man explored the brain and much of his research involved music and images. I would highly recommend his interviews on youtube; his books and for people who are facing a terminal cancer, I would suggest reading his letter in the New York Times http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=1

To quote a wise medical veteran with cancer:-

I feel a sudden clear focus and perspective.  There is no time for anything inessential.  I must focus on myself, my work and my friends.  I shall no longer look at “NewsHour” every night.  I shall no longer pay any attention to politics or arguments about global warming. 

This is not indifference but detachment – I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future.  I rejoice when I meet gifted you people – even the one who biopsied and diagnosed my metastases, I feel the future is in good hands.

…

I cannot pretend I am without fear.  But my predominant feeling is one of gratitude.  I have loved and have been loved; I have been given much and I have something in return; I have read and traveled and thought and written.  I have had an intercourse with the world, the special intercourse of writers and readers.

I have to say that if face a similar diagnosis and imminent passing; I hope these are the words on my “In Remembrance” card.

The Will to live takes on another meaning in the light of the scandal that is to engage Dr Gabriel Scally in the Scoping Inquiry which has been postponed in finding why women were not notified about cervical cancer smear test results.  Dr Vicky Phelan could have decided to take the silence choice as to the settlement of her case against the HSE and US laboratories but she recognised the negligence and as a person felt she had a duty to other women who received incorrect readings in their cervical smears.  To date there are over 200 women awaiting financial settlements.  The Government acted in haste and said these vulnerable and sick women would be granted mediation and the appropriate settlement, yet each week we hear a new name of a woman battling the lawyers engaged in our adversarial legal process in the courts.  The Screening Programmes are in jeopardy.  The bottom line is do they save lives?  Do they grant borrowed time? Do they provide opportunities for innovation to provide better treatments?  Equity and balance are relied upon and we must place trust in the system.

A health system needs to work efficiently.  A letter arrived from St. Vincent’s University Hospital notifying me of an appointment in their Breast Clinic, the Consultant being the Breast Care Service.  Normally the letter comes from BreastCheck every two years but once you have been diagnosed with breast cancer you attend the Breast Clinic in St. Vincent’s University Hospital every year. The letter states your chart number in bold print and ardently tries to ensure you engage with the system with the note Appointment Queries and a telephone number.  You are told to produce the letter to the receptionist within 15 minutes before your appointment time.

Thankfully the media have become alert to waste within the HSE and have highlighted that in 2016 as much as a £22 million cost to the State resulted from people failing to turn up for appointments. February 18th 2018, the Irish Examiner https://www.irishexaminer.com/ireland/479000-outpatient-no-shows-last-year-466843.html revealed 479,000 outpatient “no-shows” for the previous year.   It is so simple to be slip shod and not turn up to an appointment; and it happens too many times.  Waste is a chronic disease in its own right but the system can be changed with the will of the people and the HSE’s administrative abilities.  As stated before this letter clearly states that if you cannot make the appointment that you phone the highlighted number.  It then puts the onus back on the patient that if you cannot attend the appointment then it can be made available to another person who is on a waiting list.  We are all too aware of the crisis in our A&E’s and the waiting lists; some people and children having to wait for years for an appointment at the outpatients clinic.  Sensibly they further state that if you do not attend your appointment, you may be discharged back to your referring doctor.  At long last there are limits being imposed to bureaucratic chaos leading to long waiting lists for patients who are in need of care, with the responsibility being placed on the patient to be diligent and caring towards other people who are on hospital waiting lists.  To endorse this they also have a system of reminder texts which will be sent to either your phone or that of your partner or carer.

My experience:  I phoned the number.  A very pleasant foreign woman suggested that I re-arrange the dates of my two appointments so that I would have the mammogram first, which I arranged to have the same day as my Herceptin infusion, followed by an appointment with the Breast Care team to give me the results of the Mammogram.  These two appointments are in August but I really did appreciate it when she established that the appointments would be better suited with the mammogram first followed by the appointment with the Consultant.  This is common sense and it works.

Curiosity as a trait in the age of digital greatly improves a person’s attitude to their diagnosis of cancer.  The Will in itself is such a strong word that gives hope.  The Will is about strong determination which in another way is enhanced by a positive outlook.  To conclude this chapter I will quote from Elisabeth Kubler Ross because this quotation entreats us to understand the power of words especially when our bodies may be weak and our minds fatigued.

The most beautiful people we have known are who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.  These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concerns.  Beautiful people do not just happen. ~ Elisabeth Kubler Ross

Respect is another strong word but it withers in the society of today.

My education about cancer came early in life.  I grew up in a rural dispensary practice, a large Victorian house, with no central heating, on 5 acres with out-houses where workmen used to live to tend to the horses in the days before cars.  I arrived at Belper in 1963 at age 5 years and a few weeks later my brother Shane was born.  The house was in three sections, the back section which had its own avenue, the middle section and the front section which also had its own avenue.  Belper had a gatehouse which was called the dispensary which was a two roomed house which was only used on a Monday and Thursday morning for routine dispensary patients.  In those days, there were limits to transport, many people had no access to cars.

Ireland in the 1960’s, 1970’s was becoming more prosperous so one moved from having a practice that consisted of patients in receipt of medical cards to an an ever increasing number of private patients hence the medical practice was carried out in the main house.  The only suitable room for a surgery was the room in the middle section of the house where the stairs was and the hall was large enough for a waiting room.  Our playroom with the TV was upstairs so this meant we intermingled on a full time basis with patients and their families either meeting them in the car park area or in the hall.  In those days surgeries could go on until midnight and it did not end there, night calls for horrendous car accidents marked each week.  Both parents being doctors meant that practice continued 7 days a week.  Children soak up so much of their environment, my Dad used to call me rabbit ears because I constantly picked up on what I was probably not supposed to listen to and I was constantly looking for answers.  My Dad was a well read man so the post would deliver the British Medical Journal; Time magazine, the Irish Medical Times and these always caught my interest.  I never really managed to read ordinary children books.  I got bored.  I was never a diligent student, too much worry, fear replaced that spirit of altruism that is needed for the profession; anyway I never got the school grades.

I recall so many patients who had cancer; the discussions at meal time would often be stark.  Someone would have arrived at surgery and an immediate call would be made to the  relevant Consultant’s office in Dublin to get an urgent appointment as soon as possible.  You knew the warning signs and I really did hate to hear the words ‘they opened  and closed’ the no hope story.  For weeks my father or mother would call each day to see the patient diminish in health and to support the family knowing their loss.  Now it is me and I am asking if I did not have the breast screening last year, would I be idling around thinking I was tired but not realising I had cancer in my left breast.  I have to say I did say to my mother that I would just let it go its own way and she looked at me in horror and said untreated cancer is an awful way to end life – she had seen so much of it in her own life, her mother lived only a few weeks having been diagnosed with leukaemia at the Royal City of Dublin hospital, Upper Baggot Street.  I know her Uncle Donny died from cancer; as did her Uncle Bobby.  Aunt Molly lived on Waterloo Road and my Mum recalled vividly her battle with throat cancer and the impact it had on her.  Cancer and imminent death is something we are told can be avoided but do we really know if this is true?

A conundrum or so it seems and my personal experience of why silos http://www.investopedia.com/terms/s/silo-mentality.asp develop in the HSE (Health Service Executive) system in Ireland.  I have been called for the BreastCheck free service at St Vincent’s University hospital every 2 years (age range 50-69).  Every two years BreastCheck Merrion Road, Dublin  4, administratively proactive, send out a letter informing me that I have an appointment.  As this is part of a no charge screening process, I decided with the encouragement of my partner KT, that I would attend.  I am not so courageous when it comes to the CervicalCheck and by co-incidence (having confirmed this with KT today) I have never received a letter from them to attend an appointment. I have been remiss and only recently decided to check up why I had not been informed by the National Screening Service about the CervicalCheck option.  They confirmed my details and were aware I had never had a smear test under their CervicalCheck provision.  They gave me a code number and now I await the results of the smear test, the result will be posted to me.  In relation to colorectal cancer, when I reach 60 years old, I am told that the postal service within one week will deliver a test kit.  It is hard to imagine that I would be registered for BreastCheck and registered for CervicalCheck yet never called for this, but called for BreastCheck.  http://www.screeningservice.ie/

The National Screening Service (NSS) encompasses:

• BreastCheck – The National Breast Screening Programme,
• CervicalCheck – The National Cervical Screening Programme,
• BowelScreen – The National Bowel Screening Programme and Diabetic RetinaScreen – The National Diabetic Retinal Screening Programme.

Cancer screening is under attack in Ireland because of the lacunae of human nature and the failure of the professionals in charge of the National Screening Service to pass on earlier results of cervical checks to service users which if known earlier, may have altered the progression of the cancer.  The fear is that the National Screening Service is now under threat of at least 200 medical negligence claims where errors occurred.  The problem for screening for cancer is that if too many people take successful medical negligence claims and massive awards are granted, this could cancel its very existence.

It is time to get perspective and where best to start but by going to that stage beyond and based on my childhood experience of looking at medical magazines from both the UK and America.  I will start by checking out what happens in America at one of its leading hospitals and my choice is Memorial Sloan Kettering hospital to see just how important it is for screening to take place. http://www.mskcc.org/cancer-care/risk-assessment-screening.   Medical professionals encourage patients not to refer to Dr Google but sometimes there are patients who want to know as much as they can comprehend.  It may not change the outcome but it satisfies their curiosity and stops them excessively fretting or worrying.   Secondly I will review the Christie  hospital (Manchester) ranked as one of the most advanced and technological cancer hospitals in the UK and in the world. http://www.christie.nhs.uk/professionals/research/research-themes/cancer-prevention-and-early-detection-research/screening/

The above two links provide in depth information about screening which can be compared with the website of the National Screening Service.  My opinion based on my experience is that in my case the mammogram located cancer and without the check I would have have neglected any signs or non symptoms therefore I advocate that people engage with what is provided for free by the National Screening Service or if they have private health care that they avail of screening that is covered by their payments to the private health care providers.

June 12th 2018 is World Empathy Day and it is my next appointment at St. Vincent’s Private hospital for Herceptin infusion.  I have to say there is no place more humbling than walking up three flights of stairs, turning right to doors that automatically open and let you in and soon you know you are in Day Care Oncology.  As a young person I recall a long walk and conversation with my cousin Jerry Kelly, who was a missionary priest in South Korea.  We walked for miles and I recall him saying you will find life hard; you have too much empathy.  I did not understand then what Jerry was really saying but as life moves on through the decades and you find yourself less sensitive to each event, based on the fact that you don’t remember what previously would have made you so sad, you understand what empathy means.  Empathy is powerful but it is essential to understand what it really means and how to establish boundaries that protect you from people who will take advantage for their own gain.

Empathy Day and where best to be but in the company of capable medical staff, nurses and ancillary staff, people who really do care about people.  There is youth and enthusiasm which leads towards hope and in an Oncology environment, this is essential.  Rachel was my nurse for the day.  Kindness is so powerful and being in a chair beside the Nurses’ Station I could observe the chemistry of a team working with conviction, professionalism, empathy and regard for all who were been treated for cancer in the Oncology unit today and every day.  Rachel went through the checklist, she took my bloods and when the results were returned she started the Herceptin infusion.  Professor Crown said “we” were making progress.  I had the opportunity to ask about the importance of screening and he said that screening did not apply to all cancers but it did to BreastCancer CervicalCheck and Bowel which is what is provided by the National Screening Service in Ireland and The Christie hospital in Manchester.  KT prompted me to ask how many more sessions with Herceptin and Rachel told me that it was Professor Crown’s decision but that it usually was for 12 months after the last session of chemotherapy.  I then asked if I would be recalled to BreastCheck and Rachel said no that when the Herceptin treatment stops then Professor Crown would order a CT scan.

Another world, another life.  I had not seen Elinor on this visit.  I was walking down the stairs and strangely thinking about her when there she was, looking well, and near the end of her treatment.  It was lovely to see her smile.  She has three small children and it is so very important that her treatment is effective.  She was returning from her CT scan.  As a child she was all that empathy is about.  She had a particular love for her pony Patch.  Elinor and her Mum visited me in Zimbabwe in the 1990’s when she was just starting into her teenage years.

KT phoned me many times and had told me to make sure to get a taxi but that was not to be today so I got the bus and it was just as well I did otherwise I would not have met my dear gentleman doctor, Martin Callinan, dapper dressed as ever and visiting his wife in hospital.  We chatted and he spoke about his early days studying medicine in the 1950’s and working in the cancer hospital in Hume Street and  how times have changed for patients with cancer, in his life time.  Martin is everything to me that a general practitioner should be, a man with empathy yet firm, an ability to diagnose and refer promptly.  It was Martin and his wife Geraldine who noticed a significant change in my health in 2009; and although retired from medicine, told KT to immediately take me to A&E in Tallaght; as it turned out I was extremely ill, I was lithium poisoned.  http://www.cancertherapyadvisor.com/lithium-overdose/article/586736/

Martin possibly was in college at the same time as my Mum but I don’t think they knew each other.  I had always hoped my mum would leave Co. Meath and return to Dublin 4 where she lived until her twenties; she went to the Sacred Heart school in Leeson Street; and then to College of Surgeons; she lived in Dublin at spent her holidays in Co. Clare.  Now this can never be.  All I know is thoughts come hither and thither through my mind these days and I am sad for the years that could have been but were lost.  It is a great comfort to know over the last few years I met with Mum weekly and that I had met her, by chance, because KT spoke to her and asked her to meet me on Christmas week, so I saw her the Monday before the massive stroke ended her life, years before she expected to leave this earth.

As time passes, I realise that being a doctor, she was hiding her concern about me and the breast cancer especially as her own Mum died from leukaemia.  Each week she would bring little gifts, reminiscent of my childhood, and now I have them including the rug, teddies, and a rose from a dress she bought me when I was 6 years of age, they are now around my bed.  I have no access to her home since Mum passed away; nor for 12 years before that, so I have no inclusion in that part of her life which would allow me to grieve.  Acrimony and bitterness prevail yet again in my life; it is the legal profession who gain.  I know the stages of grief but I haven’t reached anger or repressed anger ie  what some people call depression.  I can say there is a sense of freedom from worry and concern about what would happen to my Mum if she became ill or incapacitated.  The house, my Mum’s home, was broken into recently, but thankfully due to vigilant neighbours and the fact that my Mum was not there, she was fortunate with little stolen.  However, it made me worry that there would be another attempt to break in and that my elderly Mum would be harmed.   It must have also caused her some concern.  My Mum never had a break-in before in her life time.  My Mum’s choice to remain in her home, a large house, with an electronic gate in a rural location was a constant source of worry for me.  I could not have lived there.

Vivienne Starr, the Optician phoned KT to say the test for Glaucoma was a normal reading; such a relief.  Then it was time to get the results of my bloods from Dr Cahill, again KT phoned him to renew my three monthly prescription and get a form for my bloods.  The previous set of bloods were normal but cholesterol still remains high and I need to focus on diet or worse again go on statins medication; I want to avoid taking any further medications so I will have to focus on my diet and avoid ice cream and other delights which raise cholesterol.  All I am awaiting now are the results from CervicalCheck.

Eilish O’Regan, Health Correspondent, Independent newspaper, reports that there could be delays of up to 12 weeks due to the surge in demand for screening in the wake of the CervicalCheck scandal.

The Government was forced to offer free retests after many women became concerned about the accuracy of their result.  It followed revelations about mistakes involving 209 women who developed cervical cancer….

The Well Woman centre has all its tests (now doubled circa 300 per week) carried out at the Coombe Hopsital which is contracted by CervicalCheck to do the work.

Dr Gabriel Scally, who is conducting the scoping inquiry into the CervicalCheck scandal, has recommended clearer information for women on the limitations of testing.  This will emphasise the failure rate involved in screening, which can lead to unavoidable failures.

The 209 women at the centre of the scandal were given the wrong tests results as a result of an error rather than a test failure.

In future women will be asked to sign a consent form which will state clearly that there will be full disclosure in the event of any error or missed diagnosis for any reason.

As I have written before that as I passed Meagher’s Chemist on Upper Baggot Street I saw the sign for the Well Woman Centre, I called in and spoke to the receptionist and as the doctor had the time, she carried out the CervicalCheck that day.  I have never used the CervicalCheck service before because they never notified me by post and sadly there are others who fall into this category too.

Enough nostalgia and back to what is reported in the media over the last few weeks that may be of significance.  The stage is set for a scoping inquiry led by Dr Gabriel Scally.  A very brave and altruistic Vicky Phelan had the capacity and motivation to sue the HSE and Clinical Pathology Laboratories Inc. after receiving incorrect test results.  Vicky is now on Pembroizumab http://www.keytruda.com/ since April (her third dose) and her Consultant Mr David Fennelly has confirmed that there is a shrinkage of her tumours.  Mr Fennelly said to her “You don’t realise how big this is for cancer and cancer patients”.

Every year approximately 300 women are diagnosed with cervical cancer and 90 die from the disease.  Other people screened are treated for pre-cancerous changes.  It is important to note that since CervicalCheck began it has detected over 50,000 pre-cancerous changes in women without any symptoms, as well as over 1,200 cancers.  Eilish O’Regan, Independent article 14th June 2018.

Juliana Adelman dated 14th June 2018 Irish Times article under the heading ‘Cervical Cancer screening is far from perfect’  outlines the history of the Pap smear which is used by Cervical Check.  To quote as follows:

The problem of false negatives is not new, but is part and parcel of the complexity and ambiguity of the test.

According to Monica Casper and Adele Clarke, the Pap smear “has become the most widely used and entrenches cancer-screening technology in the world”.

History:  The Pap smear is named after Dr George Papanicolaou, a Greek doctor working at Cornell University Medical centre in the early 20th century.  His research involved the reproductive cycle of guinea pigs in 1917 by removing a few cells from the cervix and examining them under the microscope.  He then took a swab of his wife, certain staff and patients.  It was 1940 when the medical community accepted Dr Papanicolaou’s test as an effective way of detecting very early cancer or pre-cancer.  To take the swab is the simple part.  To read the results takes time and expense and must be done by a Cytologist.

The classifications for observed cell changes are difficult to define clearly and have changed over time.  Despite the cost and complexity, women in the US began to demand the smear be used as a screening tool because of its potential to save lives through early detection.

The marketing strategy for screening placed responsibility on women to be alert to signs and to act accordingly.  This would mean that medical science had the opportunity to cure them.  It was frowned upon if a woman was diagnosed at Stage IV when she had the opportunity of having cervical smear tests on a regular basis.  Women must acknowledge and be aware of the fact that screening is imperfect.

18th June 2018: a week without any treatment or appointments.  The mood is low recently and it is hard to be motivated even with my rigid daily routine.  Thankfully today provides a reason.  Cancer medications can interfere with neurogenesis in the hippocampus http://en.wikipedia.org/wiki/Hippocampus deep within the brain and this talk with some 5.6 million hits is a must for anyone who may feel low, or who are experiencing what they call “chemo brain.”  It is an excellent Ted talk by Sandrine Thuret: ‘You can grow new brain cells.  Here’s how – Ted talk 8th October 2015. http://www.ted.com/talks/sandrine_thuret_you_can_grow_new_br…

At all times there is a need for different perspectives and I have to say a recent article by the Irish Examiner columnist, Victoria White, is worth reading.  http://www.irishexaminer.com/…/victoria-white/cervicalcheck-is-a-political-football-bei…  You are given the opportunity to explore the one sided narratives that have consumed our media of recent times.  I will quote as follows:

The Government is frightened because Vicky Phelan won an award of £2.5 million against Clinical Pathology Laboratories, where her cervical smear test was misread.

Four cases relating to incorrect smear results have already been listed to come before the High Court, with many more potentially waiting in the wings.  Emma Mhic Mathuna is seeking “exemplary and aggravated damages”… What the Government really fears is the voice of a dying woman blaming them for their plight.

Why did the Government not repeat that cervical smear testing programmes have an incorrect reading rate of about 30%; and that it was an issue about open disclosure.

…this is what we need to understand as arising from this crisis.

The women most failed by the State in the diagnosis of cervical cancer are the hundreds who contracted it in the 20 years it took to establish a screening programme after the UK and similar jurisdictions had established one.

Orange hands http://medicinetoday.com.au/dermatology-quiz/woman-orange-coloured-palms.  I noticed them but just thought it was that it was due to peeling oranges which I eat on a daily basis.  No matter how often I washed my hands, the orange colour remained.  Then someone said to me about the orange colour of my hands and again I explained it was peeling oranges and never thought anything more about them.  Then when KT asked me about my orange hands and asked why I had not checked it out, I thought it was time for Dr Google and yes this is on my list when I attend Oncology next Tuesday 3rd July.  Orange hands, the graphic on the computer replicates exactly what I had (not at present but several weeks ago).  It is a medical condition and it needs to be assessed by the professionals.  As I have only 70% kidney function (a result of Lithium poisoning) and orange hands can be related to renal problems; I will write a note in my diary and ask Professor Crown when I meet him on Tuesday.

My hair is beginning to grow again; it is very fine and I still need to wear my hat.  There is always hope and for this reason I am going to refer to an article written by Professor Crown (unfortunately there is no link from the Irish Daily Mail so I will highlight some of the relevant points) and maybe in time the link will be made available.

“Ireland’s best-known oncologist delivers an impassioned plea for a new approach” by Professor John Crown.  The heading states “A new drug has had a huge effect on Vicky Phelan’s cancer.  So shouldn’t all patients like her receive it too?

I would say yes, because we know that in Vicky Phelan’s case, since the administration of Pembrolizumab http://www.keytruda.com/ since April, the tumours are shrinking.  This is a new immunotherapy drug which was made available to Vicky Phelan via the public health service.  Professor Crown advocates that this now be made available to all women with cervix cancer who might benefit from it.  At present they cannot access it.

Pembrolizumab is from a new class of drugs that have revolutionised the therapy of several cancers.  There are now about half a dozen similar drugs in advanced stages of development or, in some cases, already in use.  They are superior to older treatments for melanoma, lung, kidney, bladder and some other cancers.

Process relating to the introduction of new drugs.  The first hurdle is the need to get regulatory approval, which is a determination by an expert government agency that the drug actually works and is safe.  In the US this is done by the FDA http://www.fda.gov/.  They have granted such an approval for Pembrolizumab for some patients with advanced cervix cancer which deteriorated despite anti-cancer treatment.  In Ireland and other European countries, this type of regulatory approval is no longer done at national level but by a pan European entity called the European Medicines Agency http://www.ema.europa.eu/

If the new drug has high efficacy and safety, it is probable that it will be approved.  The second hurdle concerns cost.  The question is who pays?  In this case the decision for reimbursement is nationally determined therefore it is the National Centre for Pharmaeconomics (NCPE) http://www.ncpe.ie/ who determines.  The drug company determines the price for the drug.  As Professor Crown writes:-

While the NCPE takes much criticism for ‘denying’ drugs for cancer, cystic fibrosis and other illnesses, it must be acknowledged that this process is not easy.  Every euro that is spent on a new cancer drug is a euro that is not available for others desperately needed activities in the health service….In Ireland not unlike the UK Ireland would now be considered as a ‘low access’ country.

Professor Crown quite rightly suggests that putting a tax on cigarettes and tobacco and even tanning parlours.  Such a tax could be used to pay for these expensive drugs.  I would add that cigarettes are possibly over taxed in this country causing smuggling or people returning from holidays stocking up on cigarette supplies which are so much cheaper than the £12 for 20 in Ireland.  There needs to be an allocation of funding from taxing items which are known to cause cancer but loopholes need to be avoided also.  Professor Crown refers to this as a ‘Hypothecated tax’ http://dictionary.cambridge.org/dictionary/english/hypothecated-taxes

Where is the equality?  If these drugs are made available to Vicky Phelan, why not other women with a similar diagnosis but without private health cover?  To further quote Professor Crown:-

It might offend civil servants and other purists of taxation theory but this revolutionary step would make the drugs available to the thousands of patients who need them today, without diverting health care resources from other areas that desperately need them.

Another month is ending and next week will be the start of a new Chapter.  Living as I do in what I call Upper Baggot Street Village, I feel included and privileged.  28th June 2018 and it was time to meet my good friend Joe again for a chat at Insomnia coffee shop.  I must have been early because I had the opportunity to read the Irish Independent newspaper and therein was the supplement from Media Planet – Irish Cancer Trials httpL//www.cancertrials.ie/2018/06/innovation-within-oncology/ If you scroll down there is a PDF link to access the supplement.  As it was late afternoon I decided to take the supplement and will replace it with a book for their bookshelves, from my collection of books.  The wise words of an old Judge come to mind and I repeat them here ‘Knowledge is no load’.

To highlight certain relevant points concerning breast cancer:

Oliver O’Connor, Chief Executive, Irish Pharmaceutical Healthcare Association http://www.ipha.ie/

the fact is, the prices are agreed as an average of 14 EU countries and, of those countries, Ireland is last among Western European countries for the adoption of new medicines….Ireland comes 18th out of 28.

Bryan Hennessy, Clinical Lead, Cancer Trials Ireland http://www.cancertrials.ie/‎

• Cancer trials can be the ultimate win-win, with patients getting the best care possible, plus potentially getting access to a new breakthrough medicine…Unfortunately Ireland is lagging behind a lot of Europe.  We only get around 3% of people in Ireland with cancer on new drug trials.  You need to get the funding in place to get new medicines trialed in the clinical environment.
• You need phase I, II and III trials involving patients to be able to show that a new medicine is safe and effective outside the laboratory.
• Patients get a lot of from cancer trials because, ultimately, they re going to get far more attentive care.  There is always a control group in any trial, who don’t get the new treatment, but rather a placebo.
• Cancer is a global phenomenon so no one country is ever going to defeat it on its on.

Professor Seamus O’Reilly Consultant Medical Oncologist, Cork University Hospital.

• Since 2008, a mass centralisation of cancer care in Ireland has seen the treatment of breast and ovarian cancer change for the better.
• Professor O’Reilly says “We’re better resources, and we’re seeing quicker diagnoses, referrals and clearer treatment pathways for patients.
• Breast cancer is the most common form of the disease in women, accounting for 17% of all cancer deaths in Ireland.  However the survival rate continues to improve with the figure now around 80%.
• Precision therapy is helping to enhance and improve existing treatments.
• In breast cancer, an increased presence of the ‘HER2’ gene causes cancer tissues to multiply faster, occurring in roughly 25% of breast cancer cases.  ‘HER2’ testing establishes whether someone is ‘HER2positive’, meaning they have the specific gene abnormality that can play a role in the development of breast cancer.  Treatment then targets this genetic abnormality directly.
• In someone with HER2 positive breast cancer, their cancer is likely to come back more quickly that in others.  We can now target that abnormality and we’re seeing better results from that.

The supplement refers to other cancers and articles which can be accessed on the above link.

Another month over – I have read through this with no recollection of writing it but then this is the process of living in Groundhog Day and its routine.  It has advantages when cancer is your companion because you constantly forget about cancer and just live in the day.

CRITICALLY EXAMINE THE ECONOMIC, SOCIO-CULTURAL

AND POLITICAL FACTORS WHICH HAVE INFLUENCED THE SUCCESS

OF ZIMBABWE’S CURRENT LAND REFORM PROGRAMME.

Introduction:

In the light of recent events (1997) in Zimbabwe, which will be reviewed in this essay, it would appear inappropriate to refer to Zimbabwe’s current Land Reform Programme as a success.  A critical examination of the economic, socio-cultural and political factors giving rise to this assumption is required.  This involves giving one’s judgment about the merit of theories or opinions or looking for the truth in line with the facts, and to then support one’s judgment by discussion of the evidence. Having defined the word ‘Critically’, I first want to provide an outline of the essay structure.   I will  establish the historical basis which is largely responsible for the Land Reform Programme in question. Then, I attempt to answer the question – What is Land Reform?   The main content of the essay is a critical examination of the economic, socio-cultural and political factors which have influenced the success (or lack of success) of Zimbabwe’s current land programme.  My conclusion reviews the motivation factors of the colonial settlers who chose to remain,  President Mugabe, ZANU-PF and the citizens of the Independent Zimbabwean.

History:-

The idea gleaming and dancing before one’s eyes like a will-of-the-wisp

at last frames itself into a plan.  Why should we not form a secret

society with but one object, the furtherance of the British Empire

and the bringing of the whole uncivilised world under British Rule,

for the recovery of the United States, for the making the

Anglo-Saxon but one Empire? 

What a dream, but yet it is probable, it is possible.

Cecil Rhodes (aged 23) in His Confession of Faith – 1902

Cecil Rhodes – similar to religion, gave encouragement and endorsement to the people of  the declining British Empire. Rhodes referred to the fact that since Africa was lying ready for take-over, it was the duty of the people of the British Empire to acquire it. Rhodes, at the age of 21, is said to have sided with those, who believed that everyone was entitled to the same opportunity.  However, 7 years later, he no longer believed in this idealism.

The timing of  the arrival of Cecil Rhodes in South Africa is a very important contributing factor to his success.

‘An Industrial and technological revolution in Europe and the United States had given him unique advantages at the precise moment he was able to profit from them…when he arrived, it took 8 months to receive a reply by letter from England.  In the next decade, when Rhodes was ready to expand his interests, Southern Africa had been transformed.  The telegraph offered instantaneous communication.  Cape Town, and Kimberly were linked by rail and the journey to London had shrunk to 19 days’ (Thomas, A. 1996: 348)

Opportunities abounded.  Financial markets became accessible.   There was dynamite for mining purposes and electricity available.  Labour was plentiful and virtually without value, economic or otherwise. ‘Rhodes achieved a near-monopoly of the world’s diamond markets, by audacious take-overs and the secret purchase of shares.  He had a perfect understanding of public relations and the power of the press, acquiring newspapers, both openly and secretly, in the belief that ‘the press rules the minds of men”  (Thomas, A. 1996:  12,13)

 The foregoing paved the way for what is known as Settler Colonialism which began in 1889.  Cecil Rhodes by way of the British South Africa Company (BSAC) received a Royal Charter of Incorporation from Great Britain.  This meant the BSAC had power to make agreements and treaties with African Rulers and Headmen to expropriate land.  This land they then distributed to white settlers.  The BSAC exploited the mineral resources.  They hoped to find similar wealth generating deposits to those found in South Africa.  However, Rhodesia was not sufficiently mineral rich and the focus switched to agriculture.

In 1930, the Land Apportionment Act segregated land into legal racial holdings.  The European land mass was 50.8%, the native purchase areas a mere 7.7% and the native reserves comprising 22.4%.  Only 5% of the population were European settlers who could purchase land in the superior areas while Africans could only occupy poor land areas.   The ‘Divide and Conquer’ strategy was applied by Great Britain resulting in a small number of Africans being allowed to purchase land.  These were to be the indigenous ‘elite’ who would distance themselves from the masses creating hostility sufficient to prevent the formation of a united front that could challenge the minority settler population.  However, the intention was defeated by the lack of credit facilities and the existence of discriminatory pricing mechanisms which applied to this elite and not the white settlers and which excluded them from assimilation with the settlers.   It is worth noting at this stage the impact of the Christian Church on African Nationalism.  When the missionaries arrived in the early 1800’s,  to advance African Nationalism was not their concern.  In many ways, they have been visible supporters of colonial rule.  Their contribution to African Nationalism was by default.  Before the missionaries arrived in Africa, there were 700 languages but only 4 had a script of their own.  This meant a very real problem with illiteracy.  By 1959, literacy had increased to 10-12%.  Education is cherished in Africa and the ambition of even the poorest of parents for their children.

Ian Smith, The Prime Minister of Southern Rhodesia, a British colony since 1923 – rejected British conditions proposed for Rhodesian Independence in 1965.  Britain responded by imposing sanctions which fueled the internal conflict between the White 5% minority and the African majority.

‘We can safely say then that the study of history has placed very powerful political weapons in the hands of many Africans and that historical consciousness is one of the chief factors under-girding African nationalism.  The educated African has very powerful ideas and ideologies that are highly explosive and dangerous due to colonialism’ (Sithole, 1959:  61)

Reference is often drawn to the docility of the African people who had to all appearances, acquiesced to white domination.  History, the education first provided by the Missionaries, effected the dissolution of tribalism in favour of nationalism.  There was a time when African students used to resent being taught by a black teacher.  However World War II altered opinions.  For the first time, Africans saw their ‘betters’ suffer defeat.  This fostered the de-mystification of the white man.  Sithole sums it up as follow:-

‘Time has given birth to a new African who is more self-asserting, more enterprising, more aggressive and more self-reliant than his forebears. It is impossible to push this new African into Time’s womb…’ (Sithole, N.  1959: 159)

The outcome was that in April 1980, Zimbabwe became Independent.  The Lancaster House agreements with Britain brought to an end 15 years of unilaterally declared independence. The former white minority Rhodesian Government withdrew and The Zimbabwe African National Union-Patriotic Front (ZANU-PF) have been in power since 1980.  It was a coalition government with Robert Mugabe as Prime Minister, and Rev. Canaan Banana in the largely ceremonial role of president.  However, the transition was not smooth, factional differences arose between the former Guerrillas.  In 1983/84, unrest by Pro-Nkomo dissidents in Matebeland resulted in thousands of Government troops being deployed – many Matebele died and vile atrocities were carried out.  By 1988 this was resolved.  Joshua Nkomo (Matebele) and Robert Mugabe (Shona) signed a Unity Agreement and ended the conflict.

In 1991, ZANU-PF initiated a substantial economic reform process.  In the mid 1990’s, Parliament approved legislation allowing the compulsory acquisition of land by the Government, which was further facilitated by President Mugabe winning the elections held in those years.  Cracks became apparent in 1997.  The Government was accused of misusing funds intended for veterans of the Independence Struggle.  The Government responded by granting large benefits for the war veterans which were financed by increased taxation.  The response from the Trade Unions was strike action and demonstrations.  President Mugabe re-focused on the land resettlement programme, the ideal scapegoat to capture the attention of the dissatisfied masses.   In 1997, Mr. Kangai said ‘it was what he termed a fact of history that these countries had, in the past, pledged financial support for land reform in Zimbabwe’ (Internet, BBC News Online: Despatches, 1997).  He also said that the white settlers would not be financially compensated, that the obligation to remunerate them rested with the UK.  In November 1997, a list of 1,000 targeted properties was published.  ZANU-PF stated their goal to acquire 5 million hectares over a five year period.  Moreover, 223,112 hectares (120 farms) were offered for sale in 1998.

What is Land Reform?

Encyclopaedia Britannica describes it as a purposive change in the way land is held or owned, how it is cultivated and moreover how it relates to the rest of the economy. Land reforms may be initiated by Government, revolution or the work of interest groups.  In the past, the aim of Land Reform has been concerned with the abolition of feudalism or colonial owners.  The aim is to improve the conditions of the peasants.

A basic foundation for a land reform programme is that it must be concerned with restructuring an existing system of landed property.  Normally what happens is that the State acquires the landed estates at the estimated market price with the intention of subdividing them into small parcels, and to sell these with full private property rights of use and exchange, to the beneficiaries.  The rationale being efficiency and equality (Atkins, 1988). The fact that Third World poverty has not been eradicated is seen as a systematic failure by the left as well as the proponents of the market economy (Sobhan, R. 1993).  Collectivist failures have occurred in other countries such as Taiwan, Russia, North Korea but on the other hand re-distributive agrarian reforms of a highly egalitarian nature took place in Japan and South Korea.  In these cases – an external force played the catalytic role.  The US instructed the re-distribution of the 37% of arable land to 66% of all agricultural households.

‘Within the constitutional constraints inherited by the first black government in Zimbabwe, there was not much scope for major land reform, but there was scope to buy out white settlers and to bring unused lands under cultivation.  Thus abandoned farms were taken over and surplus lands under white settler farms were subsumed by the State, with payment of compensation.  ‘This was designated for distribution to the landless and the poor’ (Sobhan, R.  1993: 73).  35,000 peasant families, per consequence of this, were assembled in 50 settlement schemes.  By 1984, 18% of the land held by white settlers had been redistributed to Africans.  It is important to consider the role of  bureaucrats and bureaucratic agencies.  The reality is that they have vested interests in the protracted proceedings relating to Land Reform and in particular the Ministries of Agriculture and Lands and certain para-statal affiliated groups, who have no desire for a resolution which would entail a loss of job for them or their supporters.  Moreover international aid agencies can likewise hinder policy and planning discourse.  International aid is about shifting funds to Third World governments and sometimes it is necessary to have a vehicle to effect the transfer.  Land settlement schemes provide a useful method.  (Hulme, D, 1987).

At the centre of rural development issue is the International Bank for Reconstruction and Development, i.e. the World Bank.  The World Bank raises its money from international capital markets and re-lends it at interest to governments to finance specific projects.  The World Bank together with its associate the IMF, were set up in 1944 at Bretton Woods.  The aim was to encourage free flows of trade, investments and profits, the main promoter being the US.  Irrigation schemes are funded and sponsorship is available.  The World Bank is presently supporting ‘green revolution’ technology in line with its poverty lending focus.  The World Bank is still in favour of conservative fiscal policies, liberal trade, exchange rate policies and protection of foreign investment.  Lending policies thus favour right-wing military regimes.  In other words, those who redistribute the income and benefits derived from economic growth to the rich (Williams, G.  1981).  This falls in line with the urban-bias practice engaged in.

Over 11 million hectares of land is owned by approximately 4,500 commercial farmers (Internet, IRIN).  9th September 1998 Mugabe warned of Land Reform Anarchy while attending a conference in Harare to raise funds for redistribution of land.  Donors had pledged to provide $1.5 m but were considering withdrawing from the commitment.  Mugabe informed them that if the 5 year plan did not come into effect, squatting would increase to the point of anarchy.  The last number of months in Zimbabwe has seen a high  proportion of this reality.  There has been an invasion of white-owned farms.  The accusation is that ZANU-PF have breached their promise for land redistribution  (Internet, BBC News, 1998).

Zimbabwe, like other indigenous African countries, has a corrupt ruling elite.  They boast and display their wealth.  In a speech in 1989, Robert Mugabe similar to Joshua Nkomo, having tried to place a check on the corruption, capitulated and said ‘I suppose we have to learn how to be rich as well as having to learn everything else’  (Lessing, D.  1992: 9).    It is acceptable that it is a difficult transition, involving a whole new process of learning but one hopes that ‘in learning how to be rich’ that the corruption that ‘can’ accompany being rich, could be displaced.

Critical examination of the socio-cultural and political factors which have influenced the success of Zimbabwe’s current Land Reform Programme:

‘The government has no economic or social record on which to campaign.  With the country in deep crisis – long queues for diesel and petrol, increasingly frequent power-cuts, a dire shortage of foreign exchange, massive government borrowing, numerous reports of corruption in government and state owned companies – ZANU-PF will campaign on emotive issues such as land and race.  If the party win next month, it will be by exploiting the land issue, depicting the business community and especially the 70,000 white minority as economic saboteurs, and promising a new ZANU-PF, albeit with many of the same leaders’ (Financial Times, 2000)

I cannot describe the current Land Reform Programme in Zimbabwe as a success.  Based on the foregoing history and the land reform issue, it is apparent that land redistribution is mainly a ploy used by President Mugabe and ZANU-PF to remain in power.  If President Mugabe wins over the rural community and is re-elected in April, the cost to Zimbabwe will be high.  International donors – the US, Sweden, Norway, and the The Netherlands, have provided US$920,000 through the UN Development Programme, as yet another tranche of funding to Zimbabwe recently.  The purpose of this donation was to aid the Zimbabwean Ministry of Agriculture to progress the inception phase of the land scheme drafted to resettle 77,000 rural families on millions of hectares of farm land in a 2 year time period.

Why 20 years after Independence is the land redistribution issue so prominent? 1% of the population are white settlers holding most of the productive, income yielding land, the remainder are the indigenous population. Zimbabwe wanted the US$193 million which the IMF reluctantly pledged to them in August 1999 on the basis of Zimbabwe’s officials’ confirmation that it was spending only $3 million per month on keeping troops in the Congo to support the Congolese government.  October 4th, the Financial Times, had sourced an internal memo from the Zimbabwean Finance Ministry showing that $166 million had been spent over 6 months, January to June.  This highlights the reliance that the IMF and World Bank have on local staff.  The emphasis on truth and trust is made more difficult in the light of such revelations.  This method is unreliable.  Whistleblowers need to be fostered to reveal any discrepancies (Economist, 2000: 64).  Given the foregoing, the following question is pertinent but extremely difficult to answer.

Will the donors continue to fund and what will be the implications if the donors withdraw?

White Supremacy in Action, comprises white people, who equate economic power with political power.  The economically strong are also politically strong.  Given this premise, it follows that the objective of the European ideology of white supremacy is to keep Africa politically weak.  The means of effecting this is to keep it economically weak.  In other words, political domination presupposes economic exploitation. Zimbabwe is predominantly an agricultural economy, the crops include tobacco, cotton, sugarcane.  Gold is also mined.  Zimbabwe gained Independence in 1980. The Zimbabwe of 1980 was more industrialised than most other African countries.  It had a diversified productive base, a well developed infrastructure and a sophisticated financial sector.  To date, most large-scale commercial farms are owned by the white minority.  Agricultural land is the main foreign exchange earner in Zimbabwe.  From 1991 to 1995 Zimbabwean economic growth was approx. 1.7%, this increased to 7.6% in 1996 but dropped to 3.5% in 1997 (mainly due to poor performance in agriculture and mining).  Growth in 1998 was 1.6% and similar for 1999.

Zimbabwe is an now an unstable economy, exports are considerably reduced, the currency devalued 90% since November 1997.  Inflation runs over 60%.  The reality is that the commercial farms will have to be revived to generate economic returns.  An election looms, an opposition poses a threat, namely the Movement for Democratic Change, Mugabe lost the draft constitutional referendum in February, he accuses the white farmers of causing this.  To regain the much needed rural support, he has now introduced a constitutional amendment to seize white-owned farms.  Written by Mr. Mugabe himself, the clause says that Britain is obliged to pay for the land that Rhodesian colonists took from the Africans.  If Britain does not pay then the Zimbabwean Government can confiscate the land without compensation.  (Economist, 2000, 58).

Women:

‘Sub-Saharan Africa women produce between 60 and 80 percent of agricultural foodstuffs and cash crops.  Yet, in many parts of the African Continent, women lack legal access to land and support services for production and distribution.  As a result, women are frequently left to provide for their dependents without adequate agricultural, educational, institutional, and financial support….First, legal barriers to women’s land rights must be challenged.  Second, women have to be provided full extension and support services tailored to their needs.  Third, support must be given to non-governmental organisations and movements that actively promote women’s land rights’.  (Peters and Peters, 2000: 7)

By custom, by way of colonial policies and in such schemes as Julius Nyerere’ Tanzanian Ujamaa Village Act – women only have usufruct[1].  The advantages derived from the land or property belong to their husbands or male guardians.  This precludes women from gaining credit, joining co-operatives and being available to marketing facilities.  Women in Africa are often left to provide for their families without substantial educational, agricultural, and financial support. Women often worked 16 hours a day, and still do.  They carry out the ordinary tasks as per the gendered division of labour but moreover they are involved in the agricultural work while husbands migrate to the urban areas for work.  Yet, while permit holders, mainly men, can raise government sponsored credit, through the Agricultural Finance Corporation, women do not have access to loans in their own right.  In spite of the evident and essential contribution of women, in August 1994, President Mugabe stressed that cash crop production was the main goal of resettlement in Zimbabwe, but while saying that there should be Justice for both partners in a marriage…he rejected calls for the registration of both spouses’ names on land permits, saying that these were foreign ideas not acceptable in Zimbabwe where the man was head of the household’ (Resettlement Now 1994, 7).  This could only be described as a biased statement and unjust.

It was kinship and inheritance that provided the basis of organisation for the Shona and Ndebele.  Interestingly, land was not owned in pre-colonial Shona and Ndebele societies.  The male chief of the Patrilineage held and distributed it.  Daughters were often granted usufruct rights over the lands of their fathers, the same applied to a divorced woman.

‘Land Reform as an instrument of development policy was widely acclaimed in the 1960’s and 1970’s and was vocally, if not financially, supported across the whole political spectrum.  The broad support rested on a range of opinion which saw traditional land tenure systems as responsible for political unrest, the reproduction of social injustice and as a principal cause of economic stagnation (Atkins, F. 1988: 935)

‘For both the reformers and revolutionaries, ‘in the post-colonial era agrarian reform was seen as one of the levers to modernisation and structural change of their ‘backward’ societies’ (Sobhan, 1993: 1).

Land Reform was seen as a means of eradicating poverty.

Capitalism represented development and the reformers wanted to provide incentives to the agrarian workers so that they would engage in more intensive farm methods.  The surpluses in turn would be used to underwrite the industrialisation process.  The aim was to remove the elite of the ‘ancien regime’ (Sobhan, 1993: 1).  Zimbabwe has a high donor presence.  They include the World Bank, the European Union, the IMF etc.  Many countries also donate e.g. US, Britain, Nordic countries etc.  Non-Governmental Organisations (NGO’s) are very much involved in areas relating to Aids, gender, community development. The World Bank has 8 active projects in Zimbabwe and has contributed funds amounting to US$448 million.  Projects supported include finance, public sector management, agriculture, environment, infrastructure and social sectors (World Bank, 1999). Sustainability is a most important factor.  It involves environmental, institutional, social and economic dimensions.  The urban bias is easily identified in Harare, the capital city.  Harare 1992 provided a needy respite for world-wide construction related business.  Architects, Engineers, Contracts Managers and large international companies diverted their attention from the recession/depression of their home market in the UK and Ireland, and adapted to Third World markets, in favour of profits.  Ironically, the buildings which tended to be the largest were the Reserve Bank, the 17 Storey Post Office Savings Bank, the armed forces accommodation areas/runways etc.  What will the impact of E-commerce be?  This was not envisaged!  The locations of employment are mainly for para-statal bureacracy.  What about Eco-Tourism?

‘The external debt of developing countries climbed steeply during the late 1980’s and early 1990’s.  Servicing this debt places a heavy burden…and imposes a serious constraint on the economic and social development of the poorest and most indebted…Irish Overseas Development Assistance (ODA) is given solely as grants, never as loans…Ireland is actively involved in international measures to alleviate the debt burden’ (Irish Aid – Ireland’s Official Development Assistance 1998; 18,19).

1998 – IRISH AID TO ZIMBABWE

• £1 million approximately
• Population:  11.2 million
• Human Development Report Ranking 130th out of 174 countries

Zimbabwe at one time was the 10th wealthiest country in the world but this is far from the case at present.  Equity in debt provision by donors is a key factor.  The objectives for donors i.e. apart from altruism, is to gain significant financial returns, given the risk element.   Idi Amin (Uganda), to Banda (Malawi), to Mobuto (Zaire) to name but a few, provide prime examples of how donated funds can be misdirected.  Ultimately no-one gains by corruption and particularly those 70% of the peasant population who work the land in the case of Zimbabwe.

By the time of UDI, exports amounted to 47% of GDP with imports at 36%.  At Independence, Zimbabwe’s indigenous population were better educated than their counterparts in other countries.  Large publicly floated companies like Lonrho, RTZ, BAT existed.  Historical dependence on foreign capital inflows, imported technology, and expatriate managerial inputs through transnational arrangements provided a strong support system.

Will Zimbabwe survive in the globalised markets of today?  In the case of Zimbabwe it is not a question as to whether the Government will use power, it is how they use the power?   The direction to which it is put is the prerogative and given the foregoing, there appears to be a ‘hedging bets’ strategy in place.  In 1990, Robert Mugabe formally abandoned Communism.  The Economic Structural Adjustment Policy (ESAP) was the new policy in vogue at that time.  Some commentators viewed this  as a method of getting the most out of capitalism without having to let go of socialism.  The message to the people was ‘The sugar is over’ (Lessing, D.  1992: 431).  Investment is sought by the Party from international markets.  Does this equate to pleasing the Master i.e. the Donors.  A survival by a new form of paternalism.

Conclusion:

The fabled riches of Africa – ivory, gold, diamonds, emeralds, copper.  Crops like cotton and palm oil could be grown on plantations cutting out direct sales.  Africa was too rich to be left to the Africans who they considered to need civilisation and Christianity.  The Africa they seized was technologically in the Iron age and politically divided into thousands of units.  Paternalism was the ploy used by the Europeans to win over the Africans.  Africa was a storehouse and was steadily exploited.  The Africans received only a small fraction of the wealth generated.  For the Africans, ‘Wonders have come’ – this was the general response to what the West offered.  They learned skills, they worked on construction sites, they worked as carpenters, bricklayers, they worked the land etc.   They still do.  Africans did benefit from the provision of schools, hospitals, modern administration systems, infrastructure but we must never forget that  European occupation was short but the impact was considerable.   ‘The coming of  European powers brought to Africa: the coming together of different tribes, better communications, a new economic system, the creation of new classes among African people’ (Sithole, 1959: 68).  What is interesting is that the colonial powers in their assistance with de-tribalisation paved the way for nationalist aspirations.  The development of the infrastructure also had the by-product of facilitating nationalism.  The media, the press, the radio opened up whole new areas of information to the indigenous, another beneficial resource.  The change from the tribal African to the nationalist African occurred.  I commenced this essay with an outline of the history of  Rhodesia/Zimbabwe, I then reviewed land reform.  The main context contains a critical examination of the economic, social-cultural and political factors which have influenced the success of Zimbabwe’s current Land Reform programme and under this section I have looked at women’s contribution to agriculture in Zimbabwe.  I do not consider the Land Reform Programme a success as can be concluded from this essay.

I will conclude my drawing reference to a poem called The Boss, which is referred to by Doris Lessing in her book, African Laughter.  Accompanying the poem, in a prominent position, in a Government office was the following quote.

‘Zimbabwe is run by Bosses – Robert Mugabe is a good man fallen among thieves’

 The message:  It is easy to be a ‘Boss’ but not so easy to be a ‘leader’

===================================

Bibliography:

Books:

Lessing, D. 1992.  African Laughter – Four Visits to Zimbabwe.  London:  Harper Collins.

Moyo, S. 1986.  ‘The Land Question in Mandaza, in I (ed.)  Zimbabwe the Political           Economy of Transition.  1980-86.  Dakar: Codesria

Rhodes, C. 1902.  ‘Confession of Faith’ in A. Thomas (ed) in ‘Rhodes – The Race for          Africa.  London:  BBC Books.

Riddel, R (ed) 1980.  From Rhodesia to Zimbabwe.  Morris-Jones, W.H.  New Jersey:       Frank Cass and Co.

Sithole, N. 1959.  African Nationalism.  London:  Oxford University Press.

Sobhan, R.  1993.  Agrarian Reform and Social Transformation.  Preconditions for            Development.  London.  Zed Books. Limited

Thomas, A. 1996.  Rhodes –  The Race for Africa.  London:  BBC Books.

Williams, G.  1988.  The World Bank and the Peasant Problem in Heyer, J. Roberts, P       and Williams G., (eds). London:  MacMillan

Internet Sources:

BBC New Online: Special Report.  “Zimbabwe’s History: Key Dates”:  [Internet].

2 December1998. http://news.bbc.co.uk./low/english…zimbabwe/newsid

_226000/226542

Encylopaedia Britannica.  “Land Reform”.  [Internet].  18 March 2000.

http://britannica.com

World:  “Africa Mugabe warns of Land Reform Anarchy”:  [Internet]. 9th September       1998.             http://news.bbc.co.uk./hi/english/world/africa/newsaid_1670000/167825.stm

World Bank Group.  “Country – Zimbabwe”.  [Internet] July 1999.

http://www.worldbank.org/afr/zw2.htm

Zimbabwe:  “Donors Back Land Reform”:  [Internet].  19th May 1999.

http://www.saep.org./forDB/forDB9905/ZIMlandreformIRIN99051          9.html

Zimbabwe Minister on Land Grab Plans: [Internet].  2nd December 1997.

http://BBC News/Despatches/Zimbabweminister on landgrabs

Journals:

Atkins, F.  1988.  ‘Land Reform:  A Failure of Neoclassical Theorization’.  World   Development.  16:8:935-946

Hulme, D. 1987.  ‘State Sponsored Land Settlement Policies: Theory and Practice’.

Development and change.  18:3:413-36

Newspapers:

Hawkins, T.  ‘Land Appropriation may prove to be Mugabe’s lifeline.’  Financial      Times.  1 March 2000

Reports:

Irish Aid, 1998, Ireland’s Official Development Assistance: 18, 19, 22, 42

Weekly Journals:

“Zimbabwe:  Official Invasion.”  Economist  11 March 2000: 54..58′

‘Zimbabwe:  The IMF rescues Mugabe.’  Economist.   11 September 1999.  Vol. 352.

‘Zimbabwe:  Creating Accounting in Africa – Hidden Skills.’  Economist.  9 October          2000:  64  Vol 353

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HILARY TERM SOCIOLOGY ESSAY

FOR THE ATTENTION OF T. GALVIN / SEAN REYNOLDS

FROM:  MICHELLE CLARKE – 2ND YEAR BESS 1999/2000

NO:  97810959

[1] Law, the use and enjoyment of lands or tenements without the rights to alienate such

via Trinity College Dublin (BESS) 2001: Dissertation “Advocacy for those who are classified mentally ill” by Michelle Clarke

May 23rd 2018

Thank you Shari McDaid and all at Mental Health Reform for inviting to the Oireachtas tomorrow.  I have been writing as an activist about the inadequacies in provision in both dignity, care and attention of people who are diagnosed as mentally ill.  I take this opportunity to return to the essays/dissertations I would have written while studying at Trinity College Dublin as a mature student, using whatever opportunity given to me to write about my personal experience and expectations regarding mental health provision:-

A brief outline from Mental Health Reform http://www.mentalhealthreform.ie/

Briefing note on the Mental Health (Amendment) Bill 2017 http://www.mentalhealthreform.ie/…/2017/…/Briefing-note-on-the-Mental-Health-A…

• There is a Bill going through the Oireachtas at the moment which would update the Mental Health Act, 2001 in a few key ways. It has been proposed by Fianna Fáil and passed report and final stage in the Dáil on 14th July 2017. The Bill is due to go to report and final stage in the Seanad at the beginning of May 2018.
• The Bill contains certain significant changes that strengthen the rights of people when they are in hospital for mental health care.
• The Bill will also support the right of inpatients to make decisions about their own treatment by linking the Mental Health Act, 2001 with recent law that affirms everyone should be presumed to have capacity to make decisions.
  (This includes providing people with the supports they need to be
  able to make decisions.)

Email from Mental Health Reform:  meeting cancelled until further notice.

Personal experience in 1998:  It took 15 sessions of ECT that shifted a deep depression that was resistant to medications.  I am enclosing this link because for people who are drug resistant, one does not have to refer to the film ‘One Flew Over the Cuckoo’s Nest’ and feel that terrible fear that once was linked to ECT.  http://www.cbsnews.com/news/ect-is-shock-therapy-making-a-comeback/

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9th February 2001

Student number 97810959

C\TRINITY\DISSERTATION PROPOSAL:  10/02/01

DISSERTATION PROPOSAL 

ADVOCACY FOR THOSE WHO ARE CLASSIFIED  MENTALLY  ILL?

WHO REPRESENTS  THE INTERESTS OF THESE PEOPLE?

(I was one of the 15 trainees of Cycle 1 of the Trinity Horizon project (1996/1997)

so therefore the methodology used is reflexive.) http://people.tcd.ie/mfdavis

Michel Foucault said that we each use the template but each revision of the source, produces a new schemata and with it a new image of the world.  Within this context, I want to review primarily the findings of the Trinity Horizon Project, an EU Human Resources Initiative.  This was both a training and research programme to facilitate the entry/re-entry of women recovering from depression to the workplace.  I do not wish to differentiate between men and women, and mental illness will be referred to instead of depression so I will be selective in findings chosen to reflect this. Mental illness is the term that refers collectively to all mental disorders which are subject to diagnosis. It has a significant impact on the functioning of society and the quality of life of citizens. ‘Some 400 million people in the world suffer from mental and neurological disorders or from psychological problems such as related to alcohol and drug abuse (World Health Day 2001, WHO).

Concept of the Problem:

Stigmatisation. demonisation, classification of mental patients functioned as a procedure of objectivisation and subjection.  Foucault differentiated between the document and monument and it is a poignant analogy.  The reality now is a move from medicalisation to a more sociological based, less State economically draining option.

Advocacy for those who suffer from Mental Illness:

My approach is to briefly review work completed by the World Health Organisation,  United Nations, European Union and the UK.  The UK have enacted the Human Rights Act in 1998 and there is a draft Bill for Mental Health under review.  The NHS, the Charity Organisations, and Philanthropic concerns, all acknowledge the impact of Mental Illness, the impact on social structure, the affect on many members of the labour force and participate at national policy compilation and implementation.  From the US, to the UK, to Ireland, the process is removal from the ‘Asylums’ to the community.  However, this process has implications.  First there is adjustment, medication compliance, contact links, support, basic necessities of keeping a home or sharing, the issue of homicide and suicide, giving rise to subsequent media interpretation.  It takes a very short time to be institutionalised but it is very difficult to adapt to being ‘outside’ as the revolving door situation of return to hospital establishes.  The argument is that the medications have improved, the hospital options are a stigmatised, non financial proposition, and Ireland must follow the approach taken in other countries.

Advocacy is required urgently.  Someone who can represent the interests of people who by virtue of illness, hospitalisation, sedation, concentration impairment, no physical exercise, no dealing with ‘everyday life’ who are discharged into a non developed community care system to survive.  There are day care centres available but they tend to be understaffed, and without a proactive system for rehabilitation.

Literature provides the framework for further research:

This is a critical summary and assessment of a range of existing  materials dealing with knowledge and understanding in a given field.  Its purpose is to locate the research project to form its context or background and to provide insights into previous works.

Overall from the readings the following policies in relation to mental illness are  encouraged:

• to reduce the number of people who develop mental health problems
• to help those with mental health problems to improve their overall quality of life
• to eliminate the stigma associated with having mental or emotional problems
• to provide effective interventions in areas in need
• to promote ongoing research into causes and treatment of mental disorders (WHO).

‘We recognise that the brain is the integrator of thought, emotion, behaviour, and health.  Indeed, one of the foremost contributions of contemporary mental health research is the extent to which it has mended the destructive split between ‘mental’ and physical health.  Common sense and respect for our fellow humans tells us that a focus on the positive aspects of mental health demands our immediate attention….The investment does not call for massive budgets; rather it calls for a willingness of each of us to educate ourselves and others about mental health and mental illness and thus to confront the attitudes, fear, and misunderstandings that remain as barriers before us.  It is my intent that this report will usher in a healthy era of mind and body for the Nations’ (Satcher, M., Mental Health Organisation) http://www.ncbi.nlm.nih.gov/books/NBK44243/

The policies outlined and the foregoing statement establish sound principles and guidelines but are removed from the exposures mentally ill people encounter, in their changing society.

My personal experience of the Trinity Horizon project consolidates the foregoing.  It was a research and training programme with an objective of providing work or study to prevent participants becoming long term unemployed.  Employment outcome was 51.7% as compared to the control group of 26.7%.  Further education was 80% for Cycle 1 and 50% for Cycle 2 (Trinity Horizon Project, Centre for Women Studies, 1998: 139).  The participants were introduced to subjects as follows:-  Creative Writing, Women and Society, Group Work, Computer Training,  Personal Development, Physical Activity, Counselling Support Programme, Women and Health.  Cycle 1 lasted 6 months whereas Cycle 2 lasted 9 months.  Cycle 2 derived the advantages of a Mentoring system and a work exchange programme abroad.  The approach was innovative but did not gain support to continue. The Consortium consisted with Aware, a national voluntary organisation which provides support for people with depression.  Dr. McKeon was a member of the Advisory Committee and Dr. Sheila Greene of the Department of Psychology was also involved.  They contributed advice to the design of the research.

Advocacy is imperative to guard the interests of those who albeit are a small minority but all the same exist:  Electric shock treatment as detailed in the Mental Health Inspector’s report is still used in Ireland.  The 1981 Pippard Report http://psychiatrized.org/LeonardRoyFrank/ElectroshockArticles/Electroshock.pdf stated that  ‘an 1980 survey carried out provided ‘a catalogue of blundering and dangerous incompetence’.  100 locations were visited and only 22 met the prescribed standards of the Royal College guidelines.  A high percentage delivered an unnecessarily large electric charge.  When survey’s were held in 1998, no significant improvements had occurred.  A large number of people are not aware that electric shock treatment is still used as part of Psychiatric treatment.  The Irish report provides no similar checks to the Pippard Report carried out in the UK.  Do we really know what is happening?

In the UK, a non family member can be appointed to act on your behalf while ill.   This we need too.  The introduction of divorce leaves certain members of society without control and vulnerable to an ex-partner whom they cannot and may not be well enough to divorce and if able to, not for a minimum period of 4 years.  Likewise, the choice of an independent member to family is probable when the new Mental Health Legislation is passed in the UK.

Ireland requires a system of advocacy, a representative body, comprising of a spectrum of people.  This is proposed in the UK legislation.  It would review the law, aim to protect the individual rights, monitor the voluntary organisations and initiate policy.  As it stands we rely on the media and people like Vincent Browne and Joe Duffy to probe.

HYPOTHESIS:

In relation to psychiatric illness, sociology, medicine and the health sciences will have to work together and multi-disciplinary teams will need to exist with an overall objective of  rehabilitating the ‘mentally ill’ person.  In the UK, social workers work as part of the multi-disciplinary teams in community work.

Further background to the Hypothesis:

‘Part of the cost of excessive drinking is found in three major problems; road traffic accidents, recurrent drunkenness and true compulsive alcoholism’ (Parsons, V., 118)

Link with alcohol the 4,000 in the UK who commit suicide, the majority of whom have excess alcohol in their blood stream, this quote, written in 1967 remains harrowing. Suicide is the major killer of young men under the age of 24 in Ireland.  Road Traffic Accidents are responsible for 40 deaths already this year.   RTA’s involve mainly young people with high levels of alcohol.  I want to raise the query of state of mind of the drivers.  A car and the risk factor is an attractive suicide option yet it is not mentioned.  Again, one could add in Drug Addiction for assessment.  All three areas stand independently and in a hierarchy of  ‘Shame’.  Where is the vested interested?  The ‘Drink’ market – now a Global entity of  an MNC,  while Psychiatry might be said to be a pawn of  again a global entity of the merged Glaxo, Wellcome and SmithKline Beecham.  It is interesting to note that Glaxo have moved into ethical/socially motivated type investments and inter alia have established a global mental health resource centre.  This I want to review also.  Illegal drugs – many of the Third World countries rely on these exports for their existence.  We need funds in Ireland to sponsor Mental Health programmes and Alcohol and Drug abuse programmes.

The hypothesis is that Education opportunities be made available for those who have attended a 1 year course based on the outcome of the Research and Training of the Trinity Horizon project.  These participants should qualify for back to education assistance.  Cycle 2 reported positively about the Mentor programme and I would strongly recommend a mentoring system in the provision of future Rehabilitation programmes.    University lecturers should sponsor such programmes of pre-university intake as should people in a variety of professions and business interests.  Those participants who gain access to full or part-time employment should have a mentor assigned to them.  I recommend something similar to psychometric testing be completed to identify areas suitable to the person’s personality.

The Irish Constitution was of a paternalistic nature, this followed by a subsidised health care system or privately funded system backed by voluntary health insurance payments fostered the institutionalised approach of the mental health care provision.  The economics now alter this.  It is necessary for a change in attitudes of those affected by mental illness so that they can assume a ‘Take Responsibility Attitude’ and to foster this with Mentoring provides an ideal method.  A ‘Spotter’ network has invaluable benefits to maintenance of mental health.

In 1992, the donations made to mental health charities by the general public amounted to £6 million but to animals the amount was £43 m and to those diagnosed with cancer £82 m. (Clare, A., 1993: Depression and How to survive it).  I suspect in spite of a decade nearly passed this will not have substantially changed.  I aim to review this.

Stigma – ignorance.  Life is around a person’s potential to compete in the structured market of today.  Social policy determines fate.  People who may not be well enough or for whom adequate support is not provided, are released from hospital.  The media, the police, and many ‘ordinary’ people are not briefed to deal with mental illness issues.  The shooting dead of John Carthy http://magill.ie/archive/john-carthy-death-tale-blunder-negligence-and-cover near Granard, Co. Longford, leaves a lot of questions to be answered.

The Royal College of Psychiatrists  provide free of charge a video – The Changing Mind Campaign two-minute film’ 1 in 4′.  We need this awareness for a proactive approach to education of school going population.  I am including this link which to my mind says people remain cruel and lack what is basic compassion.  Thankfully Royal College of Psychiatrists have continued on the trend they started in 2001 and people have no justifiable reason to remain ignorant.  http://www.youtube.com/watch?v=2x0T30Kbdsw

Lack of education or knowledge about mental illness, drug addiction and alcohol addiction by people working in the medical profession, involved in education at primary, secondary and third level, is far from acceptable.  The whole area of adolescent and child psychiatry is only opening up now when precipitating factors apply to children whose parents qualify under the above health categories.  We see today but not tomorrow.  We need to learn from countries that are legislating now on these topics.

The Sainsbury Trust for Mental Health http://www.sfct.org.uk/ was established in 1985.  It is also heavily involved in the design of mental health policy.  This project is built on research and development findings and is designed to influence national policy information.  Mind http://www.mind.org.uk/ another voluntary organisation is involved in influencing policy through campaigning and education in the UK.  Aware http://www.aware.ie/, Grow http://grow.ie, and others are similarly involved in advancing the views, needs and ambitions of people with experience of mental distress but they have no provision for rehabilitative programmes.

UK legislation is fully compatible with the Human Rights legislation.

Objectives

At local level:-

• –           there must be mental health promotion
• –           high standard
• –           ease to re-connect with team
• –           care plan
• –           support for the carers
• –           positive efforts to combat social exclusion.
• –           sort out the stigma
• –           Care programme Approach

Education, mentoring, training programmes, are all imperative to attain this level of service.

One issue that is causing concern in the UK regarding the reform of the Mental Health Act is that the health laws sanction the treatment of the person in the community (removing the person’s freedom to choose) and make them comply with their medication regime.  This previously could only be done in hospital.  The implications are about the person’s right to freedom.

METHODOLOGY:

A methodological framework for the analysis of documentary reality:

Initial Letter followed up by Interview:-

Dr.  Margret Fine-Davis/Mary McCarthy/Sheila Greene/Patrick McKeon

The Trinity Horizon model of training provides the basis for ongoing education/work/mentoring system that forms part of my hypothesis.  Access to the data sources will mainly be via the Internet as most sources have a Web site.

Dr. Jim Maguire/John Kearns.  Dr. Maguire is Consultant Psychiatrist in the North Eastern Health Board.  This is the public health service which is at present engaging in the movement of patients from the hospitals to the day care centres.  The internet will provide EHB data source but direct contact with Dr. Maguire will also be possible to ask questions.

Bernie, Ann, Helen, Noreen, Maura, Mary, Clare, Una – participants of cycle 1.  They will provide feedback, opinions, answer questionnaires if necessary.  Interviews are also possible.

Brian Gallagher, Gallagher Shatter, Chairman of the Mental Health Review Commission.   By letter or appointment.  He will advise on matters of advocacy and protection (lack of protection) of the person labelled mentally ill.

Internet will provide most information.   Further clarification can be gained by letter and if necessary a meeting.

Access to the Neuro-psychology Department in Trinity – concentration, memory problems due to medications.

Occupational Therapist (partially sighted) who has worked in several psychiatric hospitals and who has interesting ideas.

In certain instances, perhaps where letters are required, I will take a positivist approach.

The area I am reviewing is embedded in law and health and vast amounts of written documentation exists.  It means sifting through it to arrive at questions that are not already answered.  Then I can be positivist.  Others question may merit the interactionist approach.  Basically the approach will be semi-structured.  I want collective stories and to give voice to those who are marginalised or silenced by society.  I will where necessary engage in a creative technique using mutual disclosure.  However, I do not intend to focus on this as my experience is that people are numbed to sad stories, they listen, they don’t hear.

The template exists, resources exist to be tapped, the market is unfortunately an expanding one and particularly for those under the age of 24.   Social anxieties exist, what is unknown is that many people mask the social anxiety disorders that result in later problems of mental illness, alcoholism and drug addiction.  People need to see and hear again!!!

I have not completed a pilot study as the research report by the Trinity Horizon team is comprehensive.  I will review this again at the time I prepare for the dissertation.

Michelle Clarke

9th February 2001

97810959                    C\TRINITY\DISSERTATION PROPOSAL:  10/02/01

Personal note:

I have made a few amendments, as necessary, and which were mainly typing errors and omitted words.  I have the benefit now 17 years on of adding links to make the material more accessible.

Excluded:

Health and Safety Act 1974 – If you knowingly allow an employee under the influence of excess alcohol to continue working and this places the employee or others at risk, you could be prosecuted.  It is estimated between 3% and 5% of the workforce are over the alcohol threshold during working hours.  ICI employees are required to attend work with no alcohol in their system; alcohol means employment terminated.ikewise, Whitbread plc, have an alcohol policy.  They have an advice/support programme for employees.  Overcome the Drink Culture – media.

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Bibliography:

Alvarez, A., 1974.  The Savage God.  Great Britain:  C. Nicholls and Co.

Clare, A.,  1983.  Depression and How to Survive it.  London.  Ebury Press.

Kelleher, M.J., 1996.  Suicide and the Irish.  Dublin:  Mercier Press.

Parsons, V., 1967. Ethical Responsibility in Medicine.  A Christian Approach.  Edinburg and London:  E&S Livingstone Ltd.

Report:

Fine-Davis P., and McCarthy, M., Trinity Horizon Project.  Dublin.  Centre for Women Studies.

Internet:

Mind: http://www.mind.org.uk/aboutmind

Reforming the Mental Health Act, Department of Health, UK http://www.doh.gov.uk:/mentalhealth/summary.htm

Hyper Guide Proposals for New Health Bill http://hyperguide.co.uk./mha.uk

NHS Direct Health Care http://www.nhsdirect.nhs.uk/health

Royal College of Psychiatrists http://www.repsych.uk/public/changingminds.htm

The Sainsbury Centre for Mental Illness http://www.sainsburycentre.org.uk/Who

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Publications:

Mental Health and the Workplace

Challenges and Opportunities – 13th March 2000

Reforming the Mental Health Act

The new Legal Framework.

Quotation:-

“Experience is not what happens to you; it’s what you do with what happens to you” Aldous Huxley

In my case I kept writing … May 23rd 2018