ME/CFS sufferers. How to get help and referrals. Where to get referrals to?

[FritterSpammed]

I’m a veteran ME sufferer (15 years) but things are getting worse. I spend a large portion of my day resting or recovering from minor activity. I have no hobbies or life for myself because I’m so exhausted from all the mundane chores and parenting activity. I feel I like I’m just waiting for the sweet release of death!

My mobility is significantly affected and I need a wheelchair but I can’t afford a suitable one. I do get the mobility element of PIP but that is used on our car (which I’m very grateful for). I would not be able to propel a wheelchair myself anyway but as DH is with me on the occasions I need it for, this would be fine.

I also need support at home with household chores such as deep cleaning (I can just about manage surface cleaning).

I’ve looked at grants but these all need specialist evidence and referrals. Can anyone advise where I should start?

A referral to occupational therapy strikes me as a good place to start- wheelchairs, help with daily activities and writing referrals would all be in their wheelhouse. The problem is that there are pretty much as many different service models as there are counties and the quality of provision varies madly, especially in primary care. But I think I would talk to your GP about a referral to the community OT team.

The other line would be any specialist ME/CFS services in your area-have you been seen by them at all since diagnosis? If things are worsening you should be able to re-refer yourself but otherwise it might be the GP again.

Final idea which is more of a long shot would be to google your area and “community link worker” or “social prescribing”. Basically these are people who are supposed to be able to hook you up with other services, the NHS is big on these at the minute. Again it’s super variable- you can get some who are amazing and will help you out with grants, other services, the works, and some
who will give you a list of choirs and knitting groups in your area and that’s it.

I wish you the best of luck and I apologise for the long chunk of ideas- I know it’s knackering just to think about all this x

@Fudgetheparrot That’s very helpful, thanks. I’ve never heard of occupational therapy , do you know what this involves?

Your GP is first port of call for a wheelchair.. they will arrange this for you and someone will come out to measure this for you.
For cleaning.. you won't beable to get this free.. you have a partner that can do that..
I've been serverly disabled for over 30 years ( ex threw me under a moving bus).
I did get a stairlift fitted through social care.
I pay a cleaner/ carer/ Gardener.

@Moier Oh I know it won’t be free, I’m happy to pay, I’m just not sure where to start. I will contact my GP and ask for referrals for this and the occupational therapist.

I’m so sorry to hear what happened to you, that is horrific.

Basically they are there to help people who are struggling with their daily activities. Sometimes that’s through equipment (like a shower seat if showering is tough) and sometimes it’s working on the more social side of problems or working out different ways to do things (like pacing activities). Usually with a community OT they’d come along and do an assessment at your house and work out what help they could offer.

In my area you can self refer for occupational therapy assessment, they look at your activities of daily living and try to suggest adjustments to make it easier for you to be independent and can supply equipment free of charge. (Check your council website for the number).Your GP can refer through to the CFS clinic (in my area is is the same as the long covid clinic), this is often run by an Occupational Therapist although I have to say there is no miracle cure I'm afraid (I'm an Occupational therapist in a hospital who has had long covid and my son has been through this clinic having developed CFS after glandular fever). Its more about pacing strategies, breathing techniques, advice really🤷‍♀️