THIS from a recent British Medical Journal, reported also in
the newspapers.
“The complete lack of specialist care in England for patients with
severe myalgic encephalomyelitis (ME or chronic fatigue syndrome) could cause
deaths in future unless urgent action is taken, a coroner has warned.
“The hard hitting
prevention of future deaths (PFD) report by assistant coroner Deborah Archer on
the death of Maeve Boothby O’Neill, 27, also highlighted the lack of research
funding, training, and guidelines on treating the condition.”
The truth is that
ME and other conditions such as EDS (Hypermobility Ehlers Danlos Syndrome)
are not widely
understood by doctors who shrug and say: “Nothing to be done”.
That’s my family’s
experience. It came as complete sur prise to me. Until that moment I had faith
in the health service. No longer,
especially in respect of chronic illness.
And so to my latest Blog, which refrains from peppering this piece with the profane remarks it deserved.
Rant!!!!!
AN ODE DAMNING
HEALTH PROVIDERS
Who’s that going up
and down the stairs?
Who’s that going up
and down the stairs?
It’s the carers.
It’s the carers.
Who is that behind
the closed bedroom door?
Who is that behind
the closed bedroom door?
It’s their daughter.
It’s their daughter.
Room bound many years
They thought it was ME to begin with.
It may still be ME. But it is certainly
EDS – a faulty gene causing weak connective tissue – the stuff that
holds muscles, bones, holds all organs together - making movement
painful and sometimes impossible; no
known cure.
POTS – (Postural Orthostatic Tachycardia)
sudden movement causes surge in heart rate and corresponding
drop in blood pressure resulting in giddiness.
It’s their daughter.
Who is also considered to be autistic.
Praise be for
Kings College Hospital, London.
Praise be for
Royal Orthopaedic Hospital, Stanmore.
For their thorough and exhaustive tests
For their diagnosis of POTS and EDS.
Cursed be Surrey and Borders Partnership mental health services.
For turning down
her doctor’s referral.
Damn your eyes.
Cursed be the NHS at large, for choosing to remain
largely ignorant of these conditions, in some cases doctors disputing them; and
for their failure to press GPs to automatically provide rudimentary health
checks which would also boost morale.
Instead, they say “nothing to be done” - when there is
much that can be done to manage symptoms.
Who is that going
up and down the stairs?
Who is that going
up and down the stairs?
It’s the carers.
It’s the carers.
Carrying food, medicine, vitamins, water…morning, noon, late into the night.
It’s the carers.
Carrying Complan, carrot juice, heat wraps.
It’s the carers.
It’s the carers
Drawing the curtains
Raising the blinds.
Emptying the commode.
It’s the carers.
It’s the carers.
Taking care of the one lying in bed up upstairs.
Morning, noon and late into each and every night – for over
5 years now.
To sit with her at bedtime.
In her confusion.
Holding hands.
Their daughter.
Their daughter.
In her drawer, the university degree, key to a different
life.
It’s their daughter.
It’s their daughter.
Lying still in her bed wearing sound deadening headphones,
in a silent room in a house which must remain quiet, the TV
muted or sound turned off.
In the early years, over two decades
ago, our doctor surmised it was “ME”, saying to the 12 year-old: Nothing to be done!
He said that to a child! A life sentence.
He could have offered to look up a
specialist for us to refer to. He did nothing. We had to do our own research
and we discovered a world of self-help, about how to manage symptoms, how to oblige
the school to arrange home education.
He simply shrugged.
This doctor died recently. I held
back from adding something to the book of condolences in the surgery. Didn’t
want to offend his family.
More recently another doctor,
from the same stable, angrily told us that having to mute the TV
was ridiculous. You should not put up with
that. (This guy, I may yet swing for him, as the
saying going).
So no friends to visit, unable to do
so for many years:
No visitors to the house. No social
contact. Never goes out. No Christmas. No holidays for many years, no meals out
for years and years.
Plagued by sensory issues; sight –
people move too fast; sound – too loud, clink of plates deafening; her
anxieties - off the scale.
Once a vibrant personality, now speaks
little, subdued. Beaten down.
It’s their daughter.
It’s their daughter.
thousands like
her.
Thousands like her.
Isolated…disregarded…off the NHS radar.
Who’s that going up
and down stairs?
Who’s that going up
and down the stairs?
Not the doctor.
Not the doctor.
Who’s that ill behind
the door?
Who’s that ill behind
the door?
Five years and
counting
No one they care about.
No one they care for.
To those in the NHS who either do nothing, or do very little
to help, who never seek to ask how this is impacting upon the family brought to
breaking point – damn your eyes.
To the Mental Health services – damn your eyes.
As for carers...
Every waking hour of every day for the last five
years we have been on constant alert, for the ‘ding’ of a text from our
daughter’s mobile!
“Caregiver burnout is a state of profound mental
and physical exhaustion, especially common in parents of autistic children. It
arises when the constant demands of caregiving—managing meltdowns, sensory
overloads, and advocating for support—drain their energy. Over time, neglecting
their own needs leaves caregivers emotionally overwhelmed and trapped in guilt
and frustration, which diminishes their ability to provide care and affects
their mental health, relationships, and overall quality of life.— (Tony Attwood, Clinical Psychologist).
*The rhyming and
repetitive nature of this piece draws for its inspiration two comic sources;
ironically!:
The song by the Ukulele
Orchestra of Great Britain, which ran thus: “What’s
that coming over the hill? What’s that coming over the hill? It’s the monster.
It’s the monster”; repeating itself.
And secondly, to
Private Eye who, in 1972, gave away a spoof record – a priceless political
satire - purporting to be that of Prime Minister Ted Heath singing about the
Miners’ strike; “Oh the miners want more
pay, damn their eyes; the miners want more pay, damn their eyes.”
