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.
September 2018
