Saturday 8 December 2018

Hope 4 ME & Fibro NI PACE Trial Conference in October 2018

ME Advocates Ireland (MEAI) were delighted to be able to attend the Hope 4 ME & Fibro Northern Ireland event, The PACE Trial: - 'The Greatest Medical Scandal in History’, in the Mourne Country Hotel in Newry on October 2nd, 2018, where the PACE Trial scandal was discussed by David Tuller and Brian Hughes. 

The PACE Trial, a controversial medical trial for the treatment of Myalgic Encephalomyelitis (ME), has been found to be 'not reliable' by a major study. The trial was described during a 3-hour Westminster Parliamentary debate, as 'One of the greatest medical scandals of the 21st century'.

David Tuller, DrPH, a senior fellow in public health and journalism at the Centre for Global Public Health, School of Public Health, UC Berkeley, and Brian Hughes, Prof in Psychology NUIG, Galway, Ireland, have investigated and written extensively on the subject of the PACE Trial (UK) and provided attendees with a unique opportunity to listen to lectures re aspects of their work, and re points on the importance of their investigations being available to decision makers, healthcare providers, academics, and patients. 

Brian Hughes raised legitimate questions about research methodology within clinical research and included a chapter on PACE while discussing aspects of his new book, ‘Psychology in Crisis’. Brian talked about the replication crisis in psychology, “Rampant Methodological Flexibility”, i.e. no standard methodology, and he explained how the PACE trial took advantage of this.

 ‘Bad science affects people’s lives. It’s a matter of shame to me’- Brian Hughes

David Tuller, who also eviscerated the Pace Trial pseudoscience in his lecture, with Christine Fenton, Joan Byrne & Moira Dillon of ME Advocates Ireland (MEAI). 

Joan Mc Parland, host of the event and founder of Hope 4 ME & Fibro NI

So, what has the PACE Trial ‘scandal’ to do with urgent ME patient safety issues?

The Hope 4 ME & Fibro NI charity provides answers to this question in a recording of the whole PACE Trial Scandal event. Please access the recoding here

Thanks to Andy McHugh and his son Jack for the above recording and providing this great opportunity for ME education and awareness raising.

The full transcript of the lecture by Prof Brian Hughes and David Tuller is available here

Members of ME Advocates Ireland - Joan Byrne, Christine Fenton & Moira Dillon with the wonderful Joan McParland at the event in Newry which was hosted by Hope 4 ME & Fibro NI on October 2nd, 2018.  

It was a pleasure to meet both speakers, as well as Joan McParland, Sally Burch, Andy Mc Hugh, Áine Hefferon, and many others at the event. 

Members of ME Advocates Ireland Joan Byrne and Christine Fenton with Prof  Brian Hughes


'Having been locked away for so long it's wonderful to get out and have a powerful motive for each excursion'
 - Christine Fenton        

Thursday 6 December 2018

'Nobody is coordinating the care, there is no single consultant taking responsibility for the ME patients so they are left to sink or swim but mostly they fall between the cracks'.

‘Not only do you wait years to see a consultant, you wait more years for tests. People with chronic illness are pushed further & further away. Why are the vulnerable left to be so goddam vulnerable.' - Joan Byrne

ME Advocates Ireland (MEAI) represented people with Myalgic Encephalomyelitis (ME) and joined the Still Waiting Ireland Health Campaign to show solidarity at their Still Waiting Ireland National Health Demo which took place on October 6th, 2018. 

At the Custom House speakers from INMO, patient orgs, NGOs, Trade Unions, etc, talked about health inequalities in Ireland and numerous advocacy groups came together to protest Ireland's two-tier health service in Dublin.

ME Advocates Ireland (MEAI) have had a supportive relationship with the Still Waiting Ireland Campaign for the last two years. Some of us have attended their meetings over the months and watched them grow in numbers as many other patient groups, trade unions and TDs, etc, joined forces to demand better healthcare.

Still Waiting Ireland supported MEAI’s Dáil event in January 2018 when we had the presentation on ME in the AV Room there. Some members attended inside the AV Room, and again outside after the event where we were given a photo opportunity during their first Press photo shoot. They also supported us with our Visibility Event in May 2018, by attending the event, and offering help with our Press Release beforehand. It makes perfect sense that we would keep up the good rapport in our fight for the same thing, i.e. better healthcare in Ireland for all.

Joan Byrne of ME Advocates Ireland (MEAI) spoke of the need for health equality for all and the estimated 9-18K* people in Ireland who have ME. She spoke passionately about the need for the HSE to recognise ME and asked why this group of patients are so neglected.
Joan's full speech here

ME Advocates Ireland (MEAI) members feature in a short compilation with other health campaigners in an interview on O'Connell Street with the Irish Times at the demonstration. Joan Byrne's soundbites hit home why ME Advocates Ireland advocate on behalf of people with ME in Ireland. Link to Joan's brief interview here

* The prevalence estimate 9-18K people with ME in Ireland is based on International prevalence rates of 0.2-0.4%. Neither the Dept of Health nor the HSE do formal collation of numbers diagnosed with ME.

Top two images by Alex Art. Post and other images by MD

Friday 26 October 2018

The struggle to gain adequate care while living with Myalgic Encephalomyelitis (ME)

ME patient/advocate Corina Duyn reflects on the challenges of having 

Disability Services in Waterford accept her as having a disability.

ME Advocate Ireland member Corina Duyn seated in her wheelchair
Corina Duyn

I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again and my health has deteriorated. 

Not anticipating that I’d be ill for so long, and that my illness would so quickly result in disability, I initially received care from friends, and lived for one month with my brother and family in Kenmare. Returning to Lismore, I looked for support at home.
I was told that home help (as it was called in 1998) was for the over 65s only. Local council representation secured me a few hours of care per week. Having several severe relapses in which I found myself totally paralyzed, leading to several hospitalisations, my home help hours were increased to seven days a week, up to 4 hours a day.
This meant I was able to live in my own home, and not be taken into care.
I am immensely grateful that this intervention was presented to me by the HSE. As my GP at the time suggested, if I was taken into the local nursing home for older people I would have died.

The fact that I was in my own surroundings enabled me to rebuild my totally altered life from scratch. I was housebound for years, only occasionally making it outside of my door, mainly for medical appointments. A challenging time, to say the least. But I did not have to worry about where my food was going to come from, how I would have clean clothes, or a clean environment. My personal care needs were being met.

I lived, survived, existed, by having an open mind. 

I looked and learned from nature. I explored my totally changed life through my creative mind. I lived every moment as it came. I dealt with the immense physical pain, the total and utter exhaustion, the very frequent relapses, happening out of the blue, or due to doing a tiny, tiny bit more than I was capable of. For a while I lost the ability to read or write, or to hold a conversation. Several health scares and hospitalisations accompanied this time. Slowly, there was a slight increase in my wellbeing. I thought I would recover. Although the statistics were, and are, against me, there was always hope.

In 2006 I met my partner, and I was proud to give up the home help support. We lived off my Disability Allowance. A very, very basic existence, but I felt that I had moved forward. Care-free in a way. It took until 2015 to secure the Carers Allowance. At this time my partner was living a few doors down the road. Living with chronic illness/disability and being housebound most of the time, is not easy in a relationship, especially in a tiny house. At this time we had two small houses allowing us each a place where we could be alone and creative. A win-win situation. Unfortunately our lives moved into different directions, and I find myself living alone again, and without a carer. As a result I once again had to embark on asking for HSE support to help me live independently. This has become a daily battle.

Although my health has deteriorated again over the past six years, I am quite comfortable in my skin (as the saying goes) to be spending a lot of time in solitude. I can entertain myself quite happily by reading, looking out the window, taking photos of the birds, marveling at the changing seasons, coming up with creative ideas, which might or might not come into being. I love to write and create, when I can. I love being out in my garden or greenhouse and I enjoy the visits or phone-calls from friends and family. Dealing with the HSE however brings about immeasurable stress and impacts negatively on my mental and physical wellbeing.

Over the two decades I have had many difficulties trying to access appropriate care, especially outside of primary care. To protect myself from becoming overwhelmed by these huge challenges, I established ways to live the best life I can within the circumstances. As well as using my writing and creativity to understand my own changed life, I used my creative voice to bring about change. This year I became a proud founding member of ME Advocates Ireland. Speaking up about my personal circumstances and hoping to be a voice for many others in my situation who are not as able as me to put these challenges into words. For them, and me, I will continue on this path to bring about change. 

The HSE system of allocating care hours has changed dramatically over the past years. 

Previously the Public Health Nurse made judgment about the level of care required. Now this is done through a central allocation system where someone in an office who does not know me personally makes the decisions. Of course there is also less funding available.

Having a diagnosis of Myalgic Encephalomyelitis (ME) makes it all the more complex. The HSE has not yet established a clear pathway of care for people living with ME, like there is for example for MS. Many people with ME are housebound, or even bedbound, and many live with much more severe disability than those diagnosed with MS. Yet the clear pathway of care does not exist for us. ME has disappeared from the HSE website, awaiting new guidelines.

My current very real challenge is that I am in need of care. I need support with the most basic needs of having a shower, having my food brought in, having food prepared, having my household chores done, to be supported to occasionally leave my house, as well as to go to GP or hospital appointments, etc. In short, I need help to live.

This is complex.

I have been asking (again) since December 2017 to be assessed by HSE South Disability Services with responsibility for Adults with Physical and Sensory Disabilities, in order to obtain a Personal Assistance (PA). This would allow me to have autonomy over my care. But ME is not considered a physical disability by this office. They suggest that my GP and the primary care team should provide for my care and to contact the Public Health Nurse to submit an application.

The Public Health Nurse fills in the very basic Barthel-index assessment form, which does not take into account the complexity of living with ME.

The application goes to the Home Support Office. But as this office has no remit for the under 65s (unless terminally ill), the application goes to Disability Services.

But as Disability Services does not accept ME as a disability …
And round the circle goes.
Nobody takes responsibility.

To make this picture even more bizarre, for all the other parts of the HSE I am disabled.

I have a Primary Medical Cert and receive the Mobility Allowance (both only awarded in extreme cases of physical disabilities).
I am on the Physical & Sensory Disability Data base.
I have a powered wheelchair provided by the HSE. I have several other mobility aids provided by the HSE.
I am on Disability Allowance.
My house is adapted with an accessible shower and a ramp into my front door.
I had disability support while attending college.
I give talks about puppetry and disability all over the world (mostly via Skype).
People who see me in my wheelchair, who see me struggle at home, or when occasionally outside my house are bewildered when I share this warped thinking of the Disability Service’s logic that I am not disabled.

As no answers came my way, I went the Have Your Say route at the end of May, as suggested by a staff member of the Disability Services office.
This has not brought a solution. It brought tears.

After many struggles I now have 45 minutes of home support on weekday mornings, and half hour in the evening. I am deemed eligible for weekend hours (I am ill/disabled seven days a week, not just 5) but there is no funding available for this.
As it stands now, the HSE is not supporting me in any way to exist outside of my house, to go to appointments, or to bring food into my house, or to have enough home support hours to prepare food.
PA support is still being denied.

I looked at alternative ways.
Can I pay for enough care myself? Possibly. For a few months I can dig into my savings, but that is not sustainable on a long-term basis.
I talked with the EmployAbility Office. Can I become an employer and receive financial support to employ a PA to help me with my creative work?  My creative work is connected to my whole being; it is the essence of me. There is no support.

I am not asking for more than I need from the HSE.

Asking for help is admitting I am in need of help. My situation as it stands is a very vulnerable position to be in.
As illness continues to throw more challenges my way, I have not left my house independently for the past year. A scary thought.
Losing one’s independence is the hardest part of being ill. The hardest.

There have many weekends, and full days where I am totally on my own. Including during a severe relapse, when all I could manage was to move from bed to wheelchair, to recliner, and back to bed. When I needed to go to the bathroom, I also made my way to the kitchen (a few meters away) to get some more water, or a snack. I have my Personal alarm button on my wrist, and grateful for friends who are on the other end of the phone-line, but I cannot expect my friends to become my carers.

I feel it is a human right, a human need, to have autonomy over my care. This is something that the HSE Disability Services does not seem to understand.

This struggle to secure care has taken a huge toll on my mental and physical wellbeing. My usual state of peace of mind can my shattered in seconds when I think, or talk about the struggle I am facing with Disability Services not acknowledging my disability.
I am in tears. In seconds.

I am not fighting the HSE to get something more than what would allow me to live well for the rest of my life. To not have to worry.

A few days ago I had to decide how to use my 45 minutes of care.
There was no prepared food in the fridge or freezer. I had no clean laundry left as I have been away on a care break. I had three days of dishes piled up since my return for this care break; tubs, and bowl, cutlery and cups. And I desperately needed a shower.
I was in floods of tears, even now as I write this, on trying to figure out what was the best way to use my 45 minutes of care.
I also had to find a way to get my food shopping done.
Nobody should have to live like this.

In my fight my aim is not to have the HSE admit they are neglecting my care. I don't want to be an antagonist. I am not looking for a settlement. I am not looking to go to court.
I am looking at working with the HSE, to have them look at the discrepancies, which exist in the different HSE Community Health areas in the country.
I would like them to see what everyone else notices… that you cannot be disabled and at the same time not be disabled.

I would like to work with the HSE to show a solution, not cause a problem.
I would like to make sure that the immense struggle I am facing, and at many times wanted to throw in the towel as it became too much, that my fellow patients with ME or other long terms illnesses which have resulted in disability, don't have to go through this mental trauma. Because that is what it is. Trauma.

I hope that the words spoken by politicians and researchers will become a reality. For example: 

“Minister for Health Simon Harris TD emphasizing importance of clear communications with patients to build trust in our health service #NPSO2018”
Twitter: National Advocacy Service Ireland 18th October

 “The central message of my latest report can be summarised as follows: we need to include the rights and needs of people with disabilities into healthcare systems #CRPD”
Twitter: Catheline Devandas - UN Special Rapporteur on the rights of persons with disabilities, Geneva.


Thank you for taking time to read this, and I hope that the next update will be one of joy - of common sense prevailing.

Corina Duyn
October 2018

Corina Duyn is an artist, writer and puppet maker. She can be contacted via her website & blog where you can also see her creative work and books. She is one of the founding members of ME Advocates Ireland

Tuesday 4 September 2018

Complaint Report Offers Hope for Those Living with ME in Ireland

In this post MEAI Advocate Christine Fenton 

describes her journey with ME & the HSE, 

elements of which we'll all recognise. 

The Result? 

Recommendations for actions by the HSE.

Christine Fenton

I was diagnosed with Myalgic Encephalomyelitis (ME) in 1990 & retired from my career in teaching, a Deputy Head of a high school in the UK, in 2000.  Two years later I moved to Ireland to renovate a derelict house & enjoy my passion for dogs & horses.

In 2003 I deteriorated & was surprised that my then GP was dismissive of the ME diagnosis & regarded it as a mental health issue.

By 2006 I was losing the use of my arms & legs, I'd suddenly find myself sitting on the ground as my legs gave way, often with a horse above me!  My arms couldn't manage any repeated use of muscles.  I collapsed at an out of hours GP surgery & became paralysed for a short period.  The attending GP said she'd never seen anything like this & I should go to Dublin to find the cause.

By chance I had an Out-Patient appointment the week after the collapse & was fortunate to meet with a Consultant new to the local hospital.  He was willing to listen & regarded my presentation as an 'interesting challenge'.  

My health continued to deteriorate & from 2011-2016 I was spending approx. 3 months annually in acute care.

Given the limitations of my body, I needed everything available within arms-reach of my resting place.  At that time a wooden steamer chair with settee cushions on it was my bed & day chair. 

I also needed a consistent temperature as overheating caused me to be unwell very quickly.  If my fingers got cold it would trigger severe pain throughout my body, then my legs would give way & I would end up sitting on the floor, sometimes in an unheated room with no ability to return to a warm, comfortable space.  I had to resort to pulling ‘something’ from nearby to cover me to increase my core temperature so that I could recover & crawl/push myself, back to safety.

On the days I was too unwell to move, food had to be beside me, small, easy to digest quantities, taken when I had the energy to put food to my mouth, chew, swallow & digest – you’d never believe how hard the action of eating is, something I took for granted when healthy.

At home, as stairs were beyond me & the bathroom was upstairs I had no facilities available to me.  Initially I tried a camping cassette toilet, but it was too heavy to empty & needed emptying too frequently.  Often it was full on a day I was struggling to use it, never mind empty it.  I needed a better solution which met my needs & capability.  I decided to use coal buckets as my toilets.  When you live in one room & everything, including eating, is done in that room, a steaming commode is just not welcome - we all know the gut problems which accompany ME.  There are some indignities I am not willing to contemplate!

The HSE ‘experts on disability’ were nowhere in sight.   My request for support at home had been refused without a visit or an assessment being undertaken, no reason was given to explain why I was not worthy of an assessment.  Just a refusal letter from an HSE disability manager who made a judgement without any evidence of my needs on which to base it.

So, I was on my own & had no choice but to create a system which allowed my needs to be met, within the resources available to me. 

A good friend dismantled the kitchen & under my direction plumbed ‘my room’ so that I could embark on ‘one room’ living with cold running water.  She moved my pantry to a space just behind the chair, but in the hallway so that when I needed food I could stand, open a door, reach a tin & eat fruit, custard, pilchards – something which required no preparation but allowed me to get the basics of nutrition inside me.  The electric radiators were either side of the bed, lamps were controlled by a handheld device.  The under-stairs space was ‘converted’ into my bathroom – think of Harry Potter’s  under-stairs bedroom! -  carpeted so that I could crawl in, with my buckets & various receptacles for wet wipes, toilet paper etc – leaving everything in secure containers ready for the times I had the energy to do the necessary ‘housework’.

The Occupational Therapist visited & was aware of the situation, but I was told the Government & its agencies had no money to help me at that time.

I was finally awarded a 7hr Care Package during an admission in November 2011.  Given the earlier refusal to provide care or assess me I guess the HSE regarded it as cheaper to ‘get me out’ of an acute bed into my own home, it’s cheaper that way.  I was supposed to receive 1hr a day, but this soon drifted into 7hrs across five days, leaving me alone, without care at weekends.   I wasn’t asked if this was suitable for me but was told this is how it would be by the Carer.  I trusted the system at this stage & did as I was told.

The HSE provided no information about what my expectations of a service should be.

Mum bought me a reclining chair just before she died in early 2012 – this became my bed, my chair – the place I lived 24/7, but utter luxury after the steamer chair.

Mum’s funeral was delayed for two weeks, giving me the time to arrange to fly to the UK & be with my siblings.  My planned return flight was cancelled as I was too unwell to travel home, so returned by car & ferry which enabled me to lie down for much of the journey. 

Many months later, when I mentioned to the hospital’s neurologist who was discussing my history, that I had attended my Mum’s funeral, he responded ‘so you can get out when you want to then!’ That any person could speak with so little consideration is one aspect but the dismissal of the physical & mental effort to undertake that journey & go through that time is so typical of the snapshot judgement ‘if you can do it once you can do it all the time’ too often experienced by those with ME seeking the care of a medical professional.

Anyone with an ounce of common sense knows chronic illness comes with best, bearable, poor, impossible times.  That a neurologist lacked both human sensitivity & the awareness of what living with a chronic illness means astounds me to this day.  I was so shocked at the crassness of his words I was unable to respond. 

Unfortunately, this dismissal of the struggle to live with ME is common.  It is not within the perceptive range of many Drs to understand what living with chronic illness actually means.  To compound this lack of perception, Drs have no training or awareness of the complexity of ME & too often resort to simplistic online ‘how to treat’ guides rather than doing the work of learning to understand the neurological disease Myalgic Encephalomyelitis.

Too often those easy access ‘how to treat’ guides buy into the well marketed ‘it’s all in your head’ narrative & too many Drs swallow this bait - hook, line & sinker.  After all it’s easier & cheaper to dismiss a ‘patient’ than it is to work with the person to find out what’s actually going on. 

That these simplistic guides were created with reference to a group of people with generalised fatigue whose diagnosis was not required to include the hallmark feature of ME, that is post exertional neuroimmune exhaustion (PENE), makes their relevance questionable.  That these simplistic guides make no mention of the severity & complexity of ME renders them an irrelevance & a dangerous tool if adopted by an unsuspecting Dr ignorant of the multi system, multi organ complex disease so many of us live with.

In Autumn 2012 the Care Provider pulled out of the area.  The HSE used this as an opportunity to cut my Care Plan from 7hrs during the week to 5hrs.  There was no assessment of need, no questions as to how I was living, no response to my stating I needed more hours not less. They also stated the HSE could not source an agency to provide staff. 

The HSE & Agencies who provide Carers seem not to understand that disability is a seven day a week experience & maximising finances for a Charity or private business at the expense of those living with disability is an unprincipled act by all complicit in it.

Given that the HSE had not organised an agency to provide care, a friend stepped in to visit three times a week to cover the now five hours Care Plan at a rate of €12.16 paid to me by the HSE for this purpose. Financially it was barely worth her while but seeing my desperate need, I had been abandoned by the disability services & had no care - she felt compelled to step in where the HSE had failed me.    The HSE recorded in their notes that I ‘agreed’ to this arrangement.  Does a blackmail victim ‘agree’ to hand over the ransom money?  I needed care & the HSE were not going to provide it, so I had to.

This ‘direct payment’ system exposed me to employing staff, & therefore being subject to employment law with all its responsibilities & pitfalls, with no insurance & no health & safety support.  Compare this to the HSE paying an Agency – or Section 39 provider as they’re termed, receiving between €22 - €27 euros so that these private companies or charities can cover their costs.   As these organisations pay a basic rate of anything between €10 to €14 to their ‘Carers’ the rest disappears into the costs, or profits of the business – leaving those the money is meant to reach without an adequate service.

When I tried to raise these issues in meetings they were ‘disappeared’ from the minutes and those I committed to paper to the HSE never received a response. Who was I to question a system which ‘worked’?!

My situation in the last three months of 2012 was dire.  I received one call from my friend three times a week. The rest of the time I spent alone with my reclining chair/bed, my buckets, my pantry four feet away, electric radiators for heat within arms-reach of the bed, intermittent slow internet & poor mobile signal & no one from the HSE came near me to witness my plight.  I was so utterly ill & there was no help, nor any will to help me.

For a civilised society this was a period of survival at the most basic level.  Locked away, seeing no one & watching a friendship crumble under the strain. I know there are others worse off than I ever was, at least I had some care, but why are people in this day & age being forced to accept ‘care’ like this when so much money is passed to charities & private businesses to provide care?!

Something is very wrong & this situation needs to be addressed by Government & the HSE.

On my ‘good’ days I was able to step outside the house but could ‘fail’ & slip into paralysis within minutes if my body decided I had exceeded my very limited capability.  Prior to complete paralysis setting in, whether at home or in the hospital there is a period of up to 20 minutes in which I know I’ve ‘triggered’ the process & can therefore use this time to reach the safety of my chair/bed – or try to warn someone what is about to happen.  Not that my warning was heeded on so many occasions whilst in acute care, rather I was ‘patted on the head’ & told not to worry! 

To date, no medical examination of me whilst paralysed has been conducted, other than the basics of ED procedure.  I have asked for an EEG but that ‘wasn’t possible’ so asking for an appropriate brain scan would have been like asking someone to fly to the moon.  I do not know what is happening to me physically, but the Naviaux research in 2016 makes so much sense to me & fits with my experience so well.

Fellow ME’ers keep telling me to write a book of my experiences. A story which includes tragedy, farce & human struggle in the face of a system which is outdated & with a pervasive culture where the ‘person’ at the centre of the process was ‘diminished’ on so may occasions. 

Humour had to be a major part of my tale – had I not had:

- a quirky sense of humour
- an incredible will to ‘solve the problem’ based on a core personal principle of creating
               innovative solutions
- the professional skills necessary to ‘stand firm for truth’ against the HSE machine
- a determination to regain autonomy from a system which was determined to deny me that    
  most basic of human rights,

Without these personal qualities I doubt I would have survived. 

Those last words were hard to write.

My experience of the HSE (Ireland’s health service) was that Drs & nurses had no knowledge of ME, many Consultants & ED Drs hadn't heard of it, or denied it existed or regarded it as an inability to cope, citing 'Cognitive Behaviour Therapy' as the way forward.  The overriding pain & chest pain I experienced were 'all in my head'. 

One Registrar wrote in my notes that I had ‘abnormal beliefs & ideas’ and that ‘she refuses psychiatric consultation frequently & got cross with any physician who suggested this’.  How can one respect a health professional who has informed you that the disease you live with daily does not exist & that the associated chest pain is in your head?  I referred the matter, in writing, to my Consultant who responded formally stating he had spoken with the Registrar and had:
… counselled him about respecting the medical literature which supports ME as an organic syndrome.

I have also counselled him that his documentation in the case notes that you were asking for ‘strange tests’ and that you had a lot of abnormal beliefs and ideas was neither correct nor appropriate.

Just in case the issue does arise again in the future either within the hospital or other circumstances I officially wish to record that I don’t support his comments or documentation in the case notes.’

It takes a great deal of energy, beyond facing the daily challenges that living with chronic illness brings, to stand against & try to educate a system which is intent on not hearing.

In 2013, after another fraught hospital admission, I wrote to the General Manager & proposed that protocols for my care were written & adopted to prevent the recurrence of the appalling treatment, the ‘abuse & neglect’ I received so often in hospital.  Whilst the hospital would not admit to any wrong doing they agreed to protocols being written & followed.

During the admission, I asked for a blood test, specifically linked to ME, but the hospital could not facilitate it, despite having a pathology lab at their disposal. 

I regard logistical challenges as problems to solve so despite being isolated & mostly bed ridden, (by this time my friends had moved on with their active lives) receiving 10hrs care a week, I arranged to have the bloods collected at home & sent them to the UK.  Where there's a will there's a way and I had the will to find what was going on, the HSE had not.

The mitochondrial panel blood tests, (the test the disbelieving Registrar regarded as a ‘strange test’) showed I neither created energy at cellular level & that on demand, my limited energy depleted rapidly.  This now made sense of the paralysis which occurred after any requirement for me to 'do' anything other than very limited, very slow movement when at my best.

This was the first objective results which showed 'something' was wrong & was the only evidence to help me prise the insistent refrain from so many in the HSE that ME was trivial, was related to being tired all the time & was the result of my personality & inability to cope.

After being discharged from hospital mid-February 2013 with an increased Care Plan of 10hrs, I was so ill, so unable to cope that in March 2013 I stopped paying my mortgage so that I could buy additional ’Carer’ hours to enable me to have the basics of care.

I left my home on four occasions that year, after the February discharge, between September & Christmas.  My Carer bought food, clothes, bedding & anything else I needed which Lidl could supply, ‘shopping day’ was the highlight of my week – what would my Carer arrive with?! Shopping at Lidl together with collecting my prescriptions, Post Office business & anything else I needed had to be done within the 1hr weekly ‘shopping’ time the HSE finally allocated weekly.   I had raised the lack of the ability to buy food but the HSE disability service told me to ’shop online’ – remember that intermittent internet connection?!

Then my Carer told her Manager at the agency that no fresh food had entered the house in the time she had been there – only then did the HSE provide 1 hour weekly for shopping.  On so many occasions on my journey, this same pattern was repeated, I raised an issue – my voice would be ignored.  If a ‘professional’ raised the same issue then action would be taken.  Obviously, I did not exist.

I abdicated my finances & banking to my brother in the UK, as I had no access to a bank & an intermittent poor internet service - it was the best I could do to prevent additional financial problems arising.

My one room living was better organised in terms of storage but my ‘bathroom’ remained under the stairs.  A commode was provided in 2013 but there was insufficient Carer time to keep it under control.

A bowl of water was brought to my bed for wash-time.  On occasion I had a bed bath.  My excellent Carers would wash my hair as I leant over a bowl on the floor, the best position for me on a good day.  We laughed, we had to.

My Care Plan stated my Carers should put the electric heater on in the bathroom upstairs so the bathroom was warm enough for me to shower.  This did happen.  On a rare occasion I could luxuriate under running water, sitting on the floor of the shower, as the warm damp air sapped my strength.  Then I would come downstairs as a baby would, on my rear, & climb onto my bed to dry.  There were times I got upstairs & came down again as I had misjudged my ability & getting into the shower was beyond me.

A shower was a luxury and a huge physical effort. On balance I’m not sure if being fresh & clean was worth the physical downturn it caused.

The HSE assumed that as I could shower on occasion I could do it all the time, they made no effort to understand the effort a shower took, how unwell it could make me or that so much of the time it wasn’t possible.  HSE staff battled through the snow last winter to walk to work in the snow, these efforts were rightly recognised & praised.  In the working world if that same effort was expected every day it would be regarded as an unreasonable expectation yet, in the world of disability, ‘you can do it once, you can do it all the time’ is the pervasive, unrealistic & dismissive culture. 

It was a dismal, demeaning & degrading existence – my dignity had been stolen & those in the HSE who could have addressed the situation chose not to hear or act.  

I felt lost.  No principle by which I lived my life could be recognised in the way I was treated by the HSE.  I was being emotionally & physically ‘beaten’ by a Public Service with a duty of care towards me - I had no personal or professional experience which resonated with the manner in which this service was delivered.

But a Phoenix does rise from the ashes & if the HSE could not provide a way forward then I had to.

I ‘required’ a Multi-Disciplinary Meeting which finally took place in December 2013.  I provided A4 Planning Sheets, tabulating the background, identifying my needs & asking who was responsible for each area of need.  My hope was to open discussion, to find a way forward. 

The HSE refused to engage collaboratively.   The planning sheets were ignored.  I suggested mediation as a possibility & acknowledged a more senior manager would have to give permission. Despite subsequent reminders over the next two years there was never a response to my suggestion/request.  Yet mediation is identified as an appropriate step within the HSE’s complaint process.

In 2014 a muscle biopsy & a chemical stress test showed I had severe type II muscle atrophy & small vessel heart disease. 

A chemical stress test is an alternative to a standard treadmill stress test, 60 secs of which triggered paralysis in me so was an inappropriate test to use in my presentation.  It involves MRI comparisons between the heart at rest and after being injected with adenosine.

Cardiac issues are a common comorbidity with ME & the inability to undertake exercise subsequently affects the muscles, a downward spiral.  

‘This low tolerance for physical activity is typified by an abnormally early transition to anaerobic metabolism.  In ME the aerobic energy system does not function normally.  

Physical exertion elicits a response so distinctive that many researchers, (NIH, Cornell’s Collaborative Research Centre) ..  use exercise, not as a therapy, but as a way to aggravate the illness so that it can be studied.’

Workwell Foundation  Opposition to Graded Exercise Therapy (GET) for ME May 1, 2018

How many Drs & Consultants in Ireland:

a)      know the harm physical exertion causes? 

b)     understand what constitutes physical exertion in someone with ME, for those experiencing mild to profound ME?

Effectively, a person with ME sitting upright to brush their teeth, possibly the only upright activity of the day, can be compared to an active person running around the supermarket at speed at the end of a busy day at work after spending an hour in intensive work at the gym.  The person with ME brushing their teeth will recover far less quickly from their ‘activity’ than the active person will from theirs.

The Consultant who had done his best for me, despite the culture towards ME within the HSE then left & I was 'standing alone' against a system which had no clinical policy or guidance to direct the management of those with ME.  

A new Consultant started & as he had worked with my previous Consultant for a period was happy to continue and develop the protocols as my presentation changed.  The long acute admissions continued.

My safety & appropriate care were only assured when my Consultant was involved.  If he was absent the protocols were questioned, or dismissed & my care suffered greatly, to the extent I dreaded such times.

The Emergency Department was/is a particular risk as it's impossible to communicate with staff ignorant of your needs if you're paralysed.  Knowing speech will not return for at least four hours left me at the mercy of the system.  Think of the Victorian picture of being locked in a coffin alive but with no bell!!  At least I knew I could ‘get out’ of my coffin after four hours or so – if I was able to press the call bell, if it had been left within reach, if a staff member was willing to try to hear my 3 or 4 words spoken slowly, quietly, the effort draining me to the extent that when they said ‘pardon’ I was unable to repeat my words – so staff left & walked away until I could repeat the process.  My medical notes record me ‘persistently’ ringing the bell – a nuisance – but no record, or concept of the lived experience, the suffering, the absolute dependency on health professionals with no experience of severe ME.

On too many occasions in hospital, during a period of paralysis which involved incredible pain & hyper sensitivity to noise, light & movement the nursing staff walked by making comments such as ‘she’s sleeping’ or ignoring me altogether.  That I was conscious & aware, that I heard all their comments, some derogatory, was not within their consciousness.

On a number of occasions, I was left for a period of hours without ward staff approaching me.  Anyone knows that there is a basic bodily function which has to take place.  Without the ability to call for help & no one coming to see if help was needed a ‘wet bed’ was the inevitable result – I have only so much control of my bladder!  On one occasion, oh, I remember it so well – after sitting up for the evening meal at 5pm my energy went & I slipped into paralysis & day staff made me comfortable in bed.  Staff handover took place between 8-8.30pm & I was left, paralysed, & no night-time staff approached me. In the meantime, I was subjected to the length of the Eurovision Song Contest & Jedward assaulted my sensitive body. Now that was indeed cruelty!

The medication round bypassed me as I was ‘asleep’, so the essential pain control medication was not provided.  Eventually, a nurse came to me & I gathered the will to whisper the word that I’d waited so many hours to speak - ‘toilet’ – she asked me if I wanted a bed pan or a commode! – I had no strength to create another word never mind speak it. 

She left & brought a commode, tore my bedclothes off me & stood waiting for me to move, which of course I couldn’t. She then threw the bedclothes back over me & bustled off with the commode – obviously I had wasted valuable nursing time.  My bladder could not hold on any longer & after waiting in hope for someone to come to my aid, I was forced to wet my bed – not an easy situation for an independent creature like me. 

When the nurses finally noticed the smell, I was ‘tut tutted’ at & rolled over to change the bedding & my nightwear.  I was told I was ‘a young woman’ & ‘you must help yourself’ – had I been capable of doing so I would have done, but judgement of me had been made by those with no insight into my needs.  My wet nightdress was put in a plastic bag & thrust into my bedside locker.  Worse, the cooling fan beside me was switched off.

The poor treatment & my overheating/dehydrating state prolonged my return to any basic function, but, as the early morning hours progressed, I tried to determine how to communicate my plight to the nursing staff.

I remembered I had given a written description of the experience of these phases of paralysis to my Consultant at an Out-Patient Clinic in the February & this would be in my medical records.  I had to communicate this to the nurses.  Three words, February/Clinic/Notes – my brain repeated them, but I was unable to speak them – but I now had a strategy for communication.

Next problem, how to gain the attention of a nurse.  When I was eventually changed from my wet nightdress the call bell had been placed on my chest on top of the bedclothes but my arms were pinioned inside the extremely well tucked in bedding, I was cocooned.

Problem: How do I access the call bell when I can only move my fingers & lower arm with extreme mental effort as my brain tries to create signals to make my body work?

Over time I moved my arm, little by little to the bed edge, little by little I pulled the covers aside & found the wire to the call bell.  Then the task of pulling the bell towards me & praying I didn’t cause the bell to drop to the floor.  This took an immense amount of time & effort.

I rested.  I re-practiced my three words February/Clinic/Notes.  It’s a cruel twist of fate which makes someone who enjoys words, and who is never lost for words! & thrives when speaking in a public forum to be reduced to creating words with extreme effort.  It feels like being able to use that part of my brain which can create words internally but being unable to use my brain to create the act of speaking them, that requires me to consciously force another process to translate those brain words into a weak, feeble voice in the hope that ‘someone’ will hear.  One would assume a neurologist would be fascinated in exploring this phenomenon & learning to understand what was happening – but there I go asking someone to fly to the moon again!

I pressed the bell, now clutched in my hand – my lifeline.

The nurse came.  With supreme effort I whispered my three words, February/Clinic/notes – the nurse huffed & left.

I rested.

When I had regained sufficient energy to repeat the process I rang the bell again – with the same result.

However, perseverance paid off & after several failed attempts, eventually I was heard.  In the quiet hours of the night every sound in a hospital is heard.  I then heard the words ‘oh my God’ & two nurses came to me.  Coincidence?  I was treated with such respect & kindness, such stark contrast to the way these same nurses had treated me earlier. My wet nightdress was removed from the locker & washed through & left to dry, I was fed a yoghurt & finally, thankfully, was given pain medication.

Why does a life with ME have to be this hard in a health setting, amongst trained staff where I should expect understanding, knowledge, care & consideration?

That experience, amongst so many like it, are forever imprinted on my mind.

The Emergency Department is another trial.  ED protocol is to ‘get a response’ so I was instructed by a loud voice to ‘open your eyes’, then pain was inflicted to make me open my eyes, speak or move – all of which I was incapable of.  So I received the pain caused by the loud voice & the inflicted pain (knuckles rubbed on my breast bone, a ridged pen rubbed across the base of my thumb nail, a needle stuck under a finger nail) & bore it – if only staff would read the ED protocol which directs them how to proceed, they don’t/won’t – the result is I suffer.

When I was able to speak it was still a problem to be ‘heard’ outside my own clinical team & a few nurses with whom a mutually respectful & collaborative working relationship had grown, as the HSE culture which dismisses ME & too often the patient’s views & experience is so prevalent.  It is a culture which serves to dismiss & denigrate the expertise of the patient experience – the HSE system knows best! - yet anyone living with ME knows, without doubt, that the HSE system does not know best!

At home I was alone, had no support to leave my home to attend GP, dental or optician care.  I was denied the right to do my own shopping.  I had to 'ask permission' to obtain PA support to attend out-patient appointments to see my Consultant. I was effectively imprisoned in my own home with minimal care seeing only my ‘Carers’.  Social isolation is hard to bear in addition to chronic illness.

In education we worked to empower our students, enable their confidence to grow, to develop their problem-solving skills so that they could enter the world as a person confident of their skills, knowing their passions & having the tools needed to face the challenges the world throws at all of us.

I remained a problem solver, a seeker of solutions but was denied, at every turn, the ability to be as independent as my body would allow.  The system seemed determined to dis-able me rather than enable me.  It took me a huge personal struggle to understand that this outdated culture was in fact the norm.

Since 2013 I had ensured my voice was clearly represented in my medical records, a voice the HSE does not invite or wish to include in records.  At no time was I invited to include my voice & on too many occasions my voice was ‘disappeared’ from the formal record of meetings. 

To counter this exclusion of my voice I began recording my voice at meetings, so it could not be ‘disappeared’ but was then ‘blamed’ for the time this took!

I sought to balance the 'institutional bias' in my records, written by staff with a limited perception of what ME is & who I was, by recording a different, lived experience, of the HSE systems & culture. I retain a set of HSE minutes & a transcript from my recording of it.  It is hard to reconcile that these two records are of the same event. 

Frequently, despite being in attendance at a meeting, I was not included in the circulation of the minutes/meeting record.  To this day such an approach leaves me perplexed that the person at the centre of the process is excluded.  What message does this give to the person reliant on the HSE for the basics in their life?  Effectively you, the person, are not valued.  You are to be dismissed & those with power will write subjective records & make decisions about you, based on their limited perspective & understanding of your life.  You have no autonomy or right to a voice.

The fact that a Consumer feels the need to take such steps as recording their voice, to prove that they did speak, to protect themselves, to ensure inclusivity, is surely indicative of a system which needs to change?

Despite trying to bring the problems to the notice of the HSE on repeated occasions, there seemed to be a will by many, to ignore my concerns.

In 2014 I started a severe treatment of methotrexate, a cancer drug used for autoimmune diseases, plus anti-virals in addition to the new cardiac medications.  I thought I was ill before, this was in a new league.  Yet I was still required to ‘stand my ground’ with the HSE to try to have my voice heard.   

That I had a Consultant willing to research ME & try to find a way to help me was a huge gift, a gift denied to the majority of those with ME.  It also evidenced that there was one HSE employee who did not dismiss me or ‘write me off’ – my life did matter.

When so ill, surely such a Herculaneum effort to have one’s voice heard, to be adequately cared for - mind, body & spirit - should not be necessary. Surely, the health service should understand & work to support rather than dismiss the person to whom they have a duty of care?

In autumn 2014 the situation was so bad I sought to make a formal complaint, but my Freedom of Information (FOI) request for records was delayed by the HSE & I was just too ill to fight for them,  I could do no more than survive.  I could not formulate the complaint I so badly needed to make if there was to be any chance of changing the situation I was in.

In 2016 I created an Emergency File.  So often both in the Emergency Department & on wards I met staff new to me who had no experience of ME.  I was safe with those who had cared for me before & who did not ‘judge’ someone with ME, with others I was not safe.  The Emergency File contained the protocols for my care, regularly updated by me & approved & signed by my Consultant.  I added test results which evidenced the failed cellular energy production & the small vessel heart disease, & the International Consensus Primer on ME 2012. 

You can take a horse water, I have shoved many a horse’s nose into a bucket – but you can’t make it drink!  It’s fine having a file, but if staff choose not to read it or decide not to abide by the instructions therein, my attempt to protect myself is thwarted.

Remember, many hospital staff view a ‘patient’ who understands their illness as a threat & the ‘power’ of the Dr or nurse is brought to bear, & often suspicion arises in relation to a ‘patient’ who ‘knows too much’.  It saddens me that such a limited view is too often present amongst health professionals.

In 2015 I asked if Mobility Scooters were available from the HSE.  To go to a hospital appointment using a manual wheelchair means the person with you has to be strong enough to push you.  Many of the Agency Carers were not up to this task.  In addition, the car had to be big enough to carry a wheelchair & the Carer had to be fit enough to load it.  A pull apart mobility scooter would give me independence & was cheaper than, & required a smaller space than, an electric wheelchair.  The HSE response was ‘no’.  No suggestion of a discussion about what the HSE was able to provide, no discussion of the problem with those with professional experience of mobility issues, no suggestion of an assessment of need, just a ‘no’. 

I did my research, so many things to consider, & of course with no guidance I was starting from scratch.  Once I understood what I needed I found a company from which I could buy a small mobility scooter.  Talk about a child in a toyshop at Christmas!! My first time out I was pulling wheelies – mobility scooter style!  For the first time in so many years I could move faster than the person with me, I could carry things & best of all I could choose to ‘put me’ where I wanted to be.  The joy of that moment still brings tears as it was the first independence achieved, the first step in rebuilding a life & regaining the autonomy that the HSE had stolen from me.

My Christmas present in 2016? A bathroom off my room, all facilities present & the ability to travel to & from the bathroom on a wheeled shower chair when walking wasn’t possible.  Bliss.

Finally, in 2017 I submitted a complaint which was independently investigated, presumably at a major cost to the HSE.  The recommendations, after an investigation process lasting 15 months, refer to local hospital & community care & also to the need for change at national level.

On this journey I have met, virtually, & since 2016 physically, so many with ME who are meeting the same problems I met but without a supportive Consultant alongside them.

I have to thank those HSE staff on my journey who are true professionals, who do put the Consumer at the centre of the process, but the system & pervasive cultures limit rather than support these staff.

My hope is that, as with the recommendations from the investigation, the 'awakening' of the HSE continues & that more people will find it easier to have their voice heard so that the HSE can learn from the lived experience of the people it has a duty to serve, so that together we can build an effective health service which is supportive of Consumers & staff.

ME in Ireland is largely dismissed. Those living with it meet denigration, denial & dismissal, yet the HSE informed Simon Harris that we are appropriately managed in line with the principles of the National Healthcare Charter.  This despite there being no publicly appointed Consultant with a responsibility for ME in the HSE or any Consultant the HSE is able to identify as an expert in, or even with an interest in ME. 

The HSE has no expert who can advise other Consultants, GP’s or healthcare staff to protect us from harm.

Yet my own personal experience and that of so many others, is that the HSE’s assertion to Simon Harris is wholly inaccurate. 

That it requires years of suffering within the system, to bring the situation to a point where a complaint is investigated independently & recommendation are made based on the evidence in my medical files, before the HSE realises that the rosy picture they painted to Simon Harris is false, is a sad reflection of a public service which has a clear complaints policy in which the overriding principle is that any communicated dissatisfaction should be heard & responded to effectively to prevent escalation, this for the benefit of Consumers & staff.

Good news for the ME community:

The investigation report dated July 2018, gives thirty-three report recommendations, the three most relevant to the ME Community are:

10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME.  It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.

12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers.  To develop this guidance document, a working group to include relevant stakeholders should be established.

8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs.  Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users so as to appropriately & adequately assess their needs.  There should be uniformity in the assessment models used in each community health area. 

My sincere hope is that the implementation of these recommendations will result in a constructive partnership between Consumers living with ME & the HSE, as they learn to work collaboratively, to make life with ME a supported journey, with hope, as biomedical research continues to uncover the causes of ME & hopefully, in the near future, effective treatments.

In light of these recommendations there is the possibility of increased hope, an essential human need, for all those in the ME community.

In a year’s time we, the ME Community, need to review the progress made by the HSE in implementing these recommendations.

Christine Fenton
September 2018