Tory Majority Day 19: Why It’s Not Possible For Me To Work With MECFS

I tried it, working with my disability MECFS that is. 

In the 6 months leading up to my diagnosis I had a part-time job in the NHS. I’d worked for some years within the public sector as an academic as well as a clinician and a manager. I was doing a lot of teaching. Before that I’d worked in the arts and charities.

I’ve said before that I’ve never been unemployed and I haven’t.

I have never claimed benefits before now. Not once.

In the 18 months or so of my job I reduced my working hours to part time [my choice] because I was writing. I was interesting in writing about health and broadening what I wrote about to include journalism.

You have already read about how my writing career has stalled since having ME – so has everything else as well.

“Everything else” isn’t for this post. This post is about working while you have ME.

So.Much.Anger

I have a lot of anger and disbelief because of the process of getting diagnosed with ME and then what happened afterwards.

The NHS is a coal face 

You see for people who don’t work in the NHS, it’s really tricky to describe what it’s like on the inside. On the inside it is a hugely complex organisation with a coal-face. The coal face is the contact with patients.

At The Coal Face In The NHS.

At The Coal Face In The NHS.

Behind the coal-face are the people doing jobs a bit like mine used to be. Most managers or teachers in the NHS are ex-clinicians.

For instance I worked with someone in a press team who wasn’t a journalist, they were an ex-Nurse.

The admin roles are usually done by people who aren’t from a clinical background but for most other jobs that aren’t clinical it’s a pre-requisite of doing the job that you have a clinical training before doing it. NHS Managers are clinicians first.

Until I got CFSME I had a massive amount of respect for the NHS. I understood how expert people are who hold the roles that have so much impact on every single person in the UK, because every single person in the UK uses the NHS “from cradle to grave.”

In 2010 when the Coalition took power everything changed. I am used to being at the receiving end of what the  government does to influence my working life because if you work in the public sector it’s the government who tells you what to do and when, not a company director.

With the government cuts, the NHS changed and not for the better. Now I’m on benefits it is affecting me too. I can’t get away from it!

Then I got an illness called MECFS

Because I know how the NHS works I was a ‘good patient.’

I went to my GP with every single thing that was going wrong in the months leading up to my diagnosis. I didn’t take: “It’s nothing” for an answer, nor did I accept that the symptoms I was having were depression – something many many people with ME are told their illness is, en route to being diagnosed.

Getting diagnosed with ME was an accident. I saw a locum GP who recognised what my symptoms were and they were a result of not 1, but 2 bouts of flu I’d had in the 9 months previously. Everything changed for me after getting flu. I simply changed overnight.

But my work ethic was strong and as no-one was telling me what I should do to make sure I was recovering, I carried on working.

I mean think about it. You get diagnosed with a life changing condition and all that happens is your GP refers you to an NHS CFSME service and you wait for the appointment. That was it.

BIG MISTAKE – WORKING! 

I was a ‘good patient’ at work too. I referred myself to occupational health and got a report detailing some reasonable adjustments.

They were a bit hard to work out with the OH doctor. I mean, an illness which has no treatment at all. She simply said, to my manager in a letter, that the team should: “expect that I’d have periodic short absences from work.”

Working With CFSME. Something's Gotta Give.

Working With CFSME. Something’s Gotta Give.

Ha ha ha ha ha. I think of that now and laugh to the bottom of my belly, so all my body shakes.

I thought that my team understood that I was struggling – after all they were all Doctors, Nurses, Physio’s and Therapists.

But at no stage did anyone take me to one side and say: “We can tell you aren’t fit to work, we’ll manage it – take the time you need, we’ll cover you.”

Nope. It simply didn’t happen. Even my manager allowed me to reduce my working hours as an attempt to carry on working, carry on with my responsibilities.

When I met with her to discuss it, she didn’t say: “I’ve got to stop you there, Lindy, reducing your working hours isn’t the right way to tackle your illness, we’ll meet and talk about what is the right way forward.”

Government cuts, you see. She wanted to reduce the salary costs in the department. Me suggesting I cut my working hours even further was more of a priority to her than making sure I was well.

And she was a midwife. Tsk, tsk.

ActionforME guidance for employers

About 9 months into my eventual absence from work she told me she’d finally read this guidance that ActionforME has published.

I have to say that the guidance sounds marvellous, if you have very mild ME and can take regular rest breaks during the day. But it’s totally misleading for workers and employers alike who will think  that’s all they need to do to enable someone with ME back into the workplace.

I know so many people who have dropped out of work in an instant since their diagnosis and never returned. There’s a lot of work that needs doing to manage expectations on both sides.

But that would require a prognosis. As no-one will provide a person with ME with a prognosis, that can’t happen. I’ve never been given one. Despite numerous appointments at the NHS CFSME clinic and my GP.

What were your symptoms like?

What it was like was being clouded by wracking, terrible tiredness. Sticky, gloopy thinking, saggy energy that drained away from me with no warning. Stomach upsets, migraines, menstrual disruption, crying with no warning, a sense of over riding tension, anxiety, inability to talk due to a sore throat and voice loss.

Anyone with half a brain cell to rub together could see I wasn’t well. But it seems absolutely no-one with any clinical training or expertise actually used that training and expertise and did the right thing.

Quite surprising seeing they were all clinicians but knowing ME as well as I do, I can see why those errors were made. People don’t understand what it is and that includes people in the NHS.

Human Resources were worse than useless. Despite my knowing someone else in the organisation who had ME and they were treated brilliantly by their manager H.R. might as well have put an “out to lunch” sign on their door for the entire time I tried to talk to them about what was going on.

My union? Until my work tried to get rid of me they were no help either. Then it was really too late.

I had my blood pressure checked during this time and it was through the roof. I developed insomnia too, as a result of so much adrenaline coursing through my body to cope with trying to lead a normal working life with ME, and when I got home I slumped.

I stayed in bed all the time, I could barely think straight, I had no social life, my relationship with my then boyfriend ended, I had no support either.

The CFSME clinic 

In this time I had the first appointment at the CFSME clinic. I went to a preliminary session with a group of clinicians who run the CFSME clinic.

They took everyone in the room through a presentation and I must admit that I sat there with growing incredulity and disbelief.

They seemed to be telling everyone that the treatment – Graded Exercise Therapy and CBT and a Lifestyle Management Group would cure them. That’s a direct quote. “It WILL work, it WILL make you better.”

Now I know that you can’t tell any patient that their treatment will make them better.You have to tell them the pro’s and con’s and then allow them to weigh that up. That didn’t happen in this session. It was in my eyes deliberately misleading.

It’s never happened in any of the treatments I’ve had within the NHS CFSME services. They stick to their patter, I stick to asking them for the evidence that their treatment works and won’t harm me. They’ve never provided me with it.

In that session I looked around the room and there was a man trying to walk with crutches and a young girl who said things were improving and she could: “walk her dog around the park now.”

I had no idea as I walked out that day, that I’d be one of those people in only a couple of months.

The Crash

Not the banking crash, the ME crash.

MECFS Crash. I Didn't Know Enough To See It Coming.

MECFS Crash. I Didn’t Know Enough To See It Coming.

No-one was treating me with anything targeted for CFSME at all.

The CFSME clinic didn’t treat me, they said I needed to wait for another 1-1 appointment. Neither did my GP.

I was all alone with a new diagnosis.

Now when you are ill and no-one in the health professions are taking responsibility for your health and well being, how can you?

You can’t, because no-one is telling you what to do.

Yes. I crashed. That was 2 years ago.

Since then I’ve slowly, incrementally, in small steps, tried to recover and gain back my functioning.

I’ve slipped back down to the depths I was in and beyond. I’ve learned more about this illness than anyone in the health services  has ever told me directly and because of this I know 100% that if I am told by Ian Duncan Smith that my illness renders me “fit for work” I won’t be able to cope.

Critical of ME Charities

This is one of the reasons I’m critical of the ME Charities. Yes, they do good work but they could get us fundraising so that we can have community teachers who do outreach work in GP practices and with all health care professionals, to educate them about CFSME – but they don’t.

They could ask us to fundraise so that they employ CFSME Nurses so that they go out to people’s homes and care for those of us like me who are mostly housebound like MacMillan Nurses do – but they don’t.

When I asked Sonia Chowdhury over Twitter why ActionforME doesn’t have that on their agenda, she said she thinks that the NHS should supply that, not people from hard earned fundraising.

Sorry, Sonia. Wake up and smell the coffee.

The NHS has massive gaps in provision for people with CFSME and if the Charities stepped in we’d have some likelihood of informed, targeted treatment. The NHS can’t do that hijacked as it is by bureaucracy with the NICE guidelines.

In the meanwhile I’ll just sit here, on my sofa, with my career gone, my relationship gone, my secure home gone, my health gone and my friendships and social life severely interrupted and wait some more, shall I?

© Lindy 2015 

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4 thoughts on “Tory Majority Day 19: Why It’s Not Possible For Me To Work With MECFS

  1. Having also worked for the NHS as a manager/clinician I share your frustration. I have had ME for nearly 4 years and any progress I have made has had nothing to do with the NHS or with the ME charities. When as a Dr I first tried to research this illness there was no useful information available so I have done my own research via Twitter and people I have met online (Phoenix rising being the most useful resource). I approached Sonia to offer my services as a GP to look at providing educational resources for Drs but they were not interested. We seem to be caught in a void – the health service does not recognise that what they are providing is inadequate and the charities don’t see it as their role to point it out!

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    • It’s VERY good to hear from you. I absolutely share your enormous frustration ( if that isn’t already obvious ). I got to the point where I was thinking if it would be feasible to set up a social enterprise to provide education to health professionals about both CFS and ME. I use the term MECFS in this diary as it is a recognised term, not because I believe the illnesses are the same.

      But of course the other gap, is the one created by the illness itself. You are a doctor, I come from a background in health education. We should be ideal people to persuade, educate, influence, provide help. But ME makes that a limitation too.

      Please do keep in touch with me – I think we could have a great ‘heads together’ chat – if you’d be OK and well enough for that?

      Lindy

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  2. A good read. I particularly like your description of the fatigue! I live in Ireland where the attitudes to ME are the same (generally). The difference is that we don’t have dedicated MECFS Clinics…. By the sounds of it, it’s lucky that we don’t.

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    • Hi – so nice to hear from you. I’ve lived with the fatigue and trying to describe it to other people for so long, I have a long list of adjectives to use 😉

      So, my goodness, what on earth does someone in Ireland do when they have ME? Do you have any health care dedicated to you at all ??

      That’s shocking – a very big gap in care.

      Lindy

      Like

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