Diary Day 102: The Care Plan For CFSME Patients, What, No Prognosis?

It’s never happened.

What? I hear you ask.

Oh, being told what I can expect from this illness, my illness, CFSME.

What do you mean?

I’ve never been told by anyone I’ve seen in the medical profession, including GPs, Clinical Psychologists, Occupational Therapists, Nurses or Physiotherapists – i.e. all the people I’ve seen for CFSME in the time I’ve been ill, what I can expect from this illness.

Really?

Yes. Oh hang on, maybe I have and I missed it. In the CFS Management Course I attended, they talked about what the psychosocial model of CFSME was, what you have to do to tackle the things that can make it worse, rest and relaxation etc but they missed out one massive, mega chunk of information.

What…

They missed the bit that happens between being told I had CFSME and being told what I had to do to manage my illness myself.

Think about it…

Let’s swap CFSME for something like diabetes. If you are given a diagnosis of diabetes, you would then expect that there are a series of questions and answers that happen, that you might be given some written information, or pointed to a website or a charity.

You might get referred to a specialist, someone who really, really knows about diabetes and can advise you and answer all the other questions you might have.

At the end of the time you have first been told you have diabetes, you’d know more than you did at the beginning and they’d also do something else – they’d tell you about how the illness is likely to progress, what the outcomes are for different treatments, what will positively affect your diabetes and what won’t.

They’ll also be able to say things like: “If you take this medication, you’ll be cutting the chances of the illness making you blind or giving you neurological damage or cognitive problems..”

They’ll also say something like: “I’m afraid that a diabetic diagnosis is for life.”

In the WHOLE ENTIRE TIME I’ve had CFSME, in all the contact I’ve had at the CFSME Clinic, in the CFS Management Course, in seeing my GP and in seeing various different people in the CFSME Clinic they have never once told me any of those things. Not once.

The only time I’ve ever heard anything akin to this was when I started Graded Exercise Therapy and the Physio kept telling me that if I did it, it “would work.”

No-one has ever talked me through whether I’ve got this short term, or long term, what symptoms I should expect, what symptoms I am experiencing (aside from fatigue) and whether they are symptoms of CFSME or not.

No-one’s told me who tends to get better and why, who doesn’t and why and not one person has ever given me the tools with which to wrap my mind and body around what is happening to me, so that I can make informed decisions that are best for my health.

Everything I’ve ever learned has come from talking to other patients, reading people’s blogs and identifying what I experience with what’s said.

I had diagnosis – boom.

CFS Management Course-Boom.

Graded Exercise Therapy – Boom.

No prognosis happened at any stage. None.

No wonder we make mistakes that harm us, no wonder we aren’t able to cope a lot of the time, no wonder I feel like the last 5 years has been a waiting game with no-one holding my hand through it that should be there to help.

Being in this system of care is terrible. The best I’ve had is:

“think differently and it’ll be better.”

“Do this course, it’ll be better.”

“Graded Exercise Therapy will make you better.”

Well they haven’t.

What’s out there in terms of structured, tailored, informed advice for people like me?

Because I don’t fit the model of recovery inherent in the Psycho-Social Model that is perpetrated in the NHS care package, I am in a gap which leaves me nowhere. It must be criminal to leave people flailing like this surely?

What other illness leaves patients adrift with nothing?

If any other ME patient reading this has ever been given a prognosis within the NHS services please do tell me and what you were told – because I’ve heard / seen and got nowt.

© Lindy 2016

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