MEAW21: “I had to fire my carer because she would spend an hour and a half just talking at me, which wore me out.”

May 15, 2021


It’s ME Awareness Week 2021 (#MEAW21) and we’re talking about health and social care for people with ME/CFS (#NHS4MECFS).

Free Summary of the Draft NICE Guideline ME/CFS

With the August publication of a new NICE clinical guideline and the possibility that it will provide better support for people with the condition, we asked for feedback about health and social care so we might all consider how things are now and what can be done to bring about positive change.

As a charity, we don’t hear a lot of feedback about social care provision, compared to the number of comments we receive about the NHS and healthcare. Social care isn’t for everyone, but it should be available to those in most need.

The problems with social care seem to relate to being aware it exists in the first place, to getting access to it from your local authority, to obtaining medical recommendations, completing the care needs assessment, and then finding and keeping good paid carers who understand your complex needs.

We also hear about problems with unexpected cuts to personal budgets and care being taken away without a review, or unfair reviews being completed, or a general lack of help and support for those severely affected who are living alone.

When you are most affected by ME/CFS, it can be very hard to obtain any care and support – because you are too unwell. This is especially true for people who live alone, but even if you have a partner or family support, they too may struggle to know who to turn to.

More information:

If you, or someone you know, receives, or should receive, social care, then do please join in the discussions on MEA social media this week. We’d really like to hear your views on whether the new NICE clinical guideline might help improve on the current situation, or if you have any other ideas.

We feature below a selection of comments received since January 2021. We hope to compile a report on health and social care later in the year to help as we consider final publication and implementation of the guideline from NICE.

Social Care for People with ME/CFS

1. “One carer in particular used to come three times a week 2 hours at a time. She would only go to a local shop which was expensive. She used to tell me to go and rest and that she would do all my jobs etc. but she waited until I went to sleep and then she would leave before time. But some of the other carers I have had would literally do anything for me. They were fabulous in comparison.”

2. “I have had a lot of bad experiences with paid carers. Some don’t care about not using fragrance and have attacked me when I asked them to change into clean non-scented clothing.”

3. “I had to fire my carer because she would spend an hour and a half just talking at me, which wore me out. So, I would get up and start doing her job just to get her to do some work. Then she would help. I would be so worn out that I couldn't move until her next visit.
“She would constantly tell me I don't look sick, I just need to get over myself, like her lazy neurotic sister. I can’t get a replacement because of the Covid restrictions. I haven't had a carer since October last year. My home is disgusting but at least I don’t have someone mocking me.”

Feedback

We want to publish a report of the recent health and social care experiences from people with ME/CFS.

  • we are looking for good and bad experiences as they relate to primary and secondary healthcare (GPs, diagnosis, referrals, ME/CFS specialist services, management, etc.), and,
  • experiences of social care provision (accessibility, local authorities, care need assessments, paid carers etc.).
  • We also want to hear from people who have not been in touch with health or social care because previous experiences have made them decide to opt-out.
  • And we want to learn about the kind of changes you think need to be made that will improve the way in which people with ME/CFS are treated by the NHS and social care services.

Please join this week’s discussions on MEA social media, or you can write to us via email: Feedback@meassociation.org.uk Try and limit your emails to 200 words per story if at all possible. We can’t reply to every email we receive, but we do promise to read them all.

4. “I have been having 4 professional care visits a day for over 5 years and have a LOT of feedback!
“My experience is that the good carers are golden but bad ones can make your life hell. Previous staff accused me of faking symptoms and made up lies that led to a nervous breakdown. There were also, “Wish I could stay in bed all day,” – type comments.
“Care agencies knew this but habitually protect themselves rather than their clients. There is not enough independent advocacy for clients and the whole social care industry in the UK desperately needs an overhaul.
“I have to reiterate though that there are some wonderful carers who have changed my quality of life. Currently, the great and the awful are going unrecognised.”

5. “My only experience with social care was them telling me I wasn’t eligible for a care package. I have severe ME and am predominantly housebound.
“My mum does a lot to care for me but we hoped to get something in place so that I would have someone to help if my mum were ever unwell or if she wanted to go on holiday. But apparently, that’s not something they do.
“I also hoped to have help with washing my hair (even if just someone coming in once a week) but apparently “no one died from having greasy hair”, so I was ineligible.”

Help Raise Awareness 

We have produced an MEAW21 Media Toolkit that contains posters and graphics you are free to use during ME Awareness Week and beyond.

We’ll also update it with all the blogs and other information we will be sharing from Monday 10 – Sunday 16 May. 

New Website Poll 

Consider the last time you had any contact with the NHS about ME/CFS. How would you rate this experience?

6. “I had to cancel my care because the agency kept sending people who were not trained, who had no idea how to deal with a wheelchair, or couldn't push one, and who had to be constantly micromanaged, leaving me exhausted. My husband now stays home and cares for me instead.”

7. “My adult daughter has severe ME/CFS and has been bedbound for about 3 years and is very debilitated. She has been consistently declining for several years now and is unable to do anything for herself.
“I have become her full-time carer and she relies on me for everything – feeding, washing, medication, dealing with doctors, advocating etc. It's physically and emotionally exhausting and we get no help at all.
“We referred ourselves to Social Services and had a visit where the case worker could see how incapacitated she was and how much work is involved for me as her carer. She said she was only able to offer us 4 hours a week of care (which could not be household chores that might help me) through an agency and that it would be means tested.
“As the offer was so little, and no guarantee could be made of consistency of staff (which could involve me repeating instructions about a very complex patient) we felt we had to decline.”

The above are selected extracts from submitted stories. We will be including complete stories in a report on health & social care later in 2021.

Russell Fleming, Content Manager, ME Association

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