Complaint about Chronic Fatigue clinic?

[ArseInTheCoOpWindow]

I’ve been severely unwell with chronic fatigue. I mean severely. Unable to attend hospital appointments.

Now they are threatening to discharge me because I’ve been too unwell to attend a heart tracer despite the fact l had one ages ago for them.

Im severely unwell often bedbound. And yet the people l need support from are threatening to discharge me as I’m just too ill to attend the medical required.

what do l do?

I think you either get someone to help you attend or they discharge you. If you are saying you can't go there's there is little point them keeping you on their lists when other people might benefit from the appointment. What would you like them to do? What would help you?

Are you talking to the clinic? Make sure they know your situation and ask THEM to solve this problem. Could you attend if pushed in a wheelchair, if so hire a wheelchair from a local mobility shop and pay a carer to take you or find out about good neighbour schemes that could help. Can you get to GP, many can do a short heart trace.

The neglect of people with severe ME/CFS is a national shame, you have my sympathy.

It is so hard to advocate for yourself when you are so ill. Could someone contact the ME Association/your GP/MP write a PALS complaint for you? I am so sorry you are going through this.

Can you get transport from the hosp and go in as a day case?

They could take me without the heart trace? I’ve already had one for them!

My GP is on my side. She thinks they are being atrocious.

Ive just been too ill to attend. Thats the point. Vomiting I the car in short journeys. Too weak to leave the bed.

Can your GP advocate for you and speak to them?

Can you contact "friends of the hospital" charity, have a look on their website, and between them and a partner/friend/family member there might be a solution to getting to your appointments.

You would be the only bedbound patient. There must be options.

Do you have anyone who could find out this information for you if you are struggling?

My go is furoius.

She looked at my iPhone yesterday and said she would write to them with the results.

Im having a good day today and am incandescent with rage.

I'm not sure what you expect them to do though? Your GP can be furious but it doesn't magic up home visiting cardiologists, a doc or nurse.
If your heart trace was a long time ago it's right that they want to re do it.
Can they arrange hospital transport for you?

The NICE guidelines says patients with chronic fatigue should not be discharged if they are unable to attend appointments.

Am l supposed to have no support from the clinic l need as l’m to ill attend an appointment. Bearing in mind what the clinic is. Can you not see how discriminatory that is?

Anyway, I’ve phoned PALS and they weren’t impressed and have contacted them.

But what do you genuinely think they can do? They can't magic up staff to do home visits.

@Lifesucks2024 unfortunately just moving someone, even short distances, with severe ME/CFS can be life threatening in some cases. If the clinicians insist that the OP needs a heart trace, then yes they need to work out how to do this and it could include being visited at home. The OP certainly shouldn't just be discharged.

I am already depressed with the lack of understanding here of just how serious a condition ME/CFS can be. OP you might be better going on a forum specifically for ME/CFS sufferers as you might find out what adjustments others have had made for them.

I'm disabled.

Electric wheelchair will help. You can hire them if you don't want to/can't afford to buy.

Vomiting in the car - personally I don't use plastic bags anymore as they have holes in but freezer bags are good. That plus a bucket normally works.
Antihistamines are good for nausea otherwise your doctor can prescribe something stronger.

You can get wheelchair taxis (may need to pre book) and might be a problem if you are very rural.

A lot of rural areas have a voluntary scheme if people who drive others to hospital appointments etc.

They don’t have to discharge her- and in fact the NICE guidelines state they should not.

@ArseInTheCoOpWindow isn’t asking for a home visit- they can keep her on their books and do the tests they need at a time when she can attend.

Do you have M.E? You do know that it is a life threatening, utterly debilitating, multi system illness? It isn’t just feeling tired.

A wheelchair and a bucket aren’t going to magically make someone with severe M.E. who is bed bound be able to travel.

This is a common issue with lots of medical issues. My mum put off going to get medical issues sorted because she felt too ill to go for tests.

@Whatsortofrockareyou I disagree. People are transported extremely ill to hospital all the time, even unconscious. If someone is really struggling and can not transfer to a car, the book hospital transport or a private ambulance/taxi where you can be wheeled in and out.

Agreed

@Lifesucks2024 and @purplecaterpillar the NICE guidelines have been written in such a way for ME/CFS because there can be a very serious risk to life in moving people with severe ME/CFS. For those of us living with this it is very disheartening to read your comments.

Keep quoting the NICE guidelines at them, keep talking to PALS. ( I’ve found them beyond useless at my hospital but hopefully you’ll have better luck). Involve your new MP if necessary after July 4.
I’m sad that none of this surprises me, had fibro and CFS for years. It’s shit and the medical support is zero.

The NICE guidelines don't say people with ME/ CFS can't be moved for tests or treatment. I'm sorry you find it disheartening but so do millions of people needing tests/treatment on a massively overstretched NHS. I have an extremely challenging medical condition myself so I'm not coming from a place of being unkind - just from a place of awareness of NHS capacity. Do I wish things were different? Yes but they're not.

Tell me you don’t understand M.E and M.E services without telling me you don’t understand M.E or M.E services 🤦‍♀️.

1. The service doesn’t need to discharge her- it isn’t like an asthma clinic or a dentist where if you don’t go they can discharge you- they know full well how the illness works, that’s why the NICE guidelines say they should not discharge people who can’t attend. That’s why PALS were interested when the op contacted them.

2. No one is sending an ambulance to lift her out of bed and transfer her to hospital and back- they are expecting a bed bound woman to become unbedbound when it suits them. If she could do this I’m sure she would- we all would- because being bedridden is utterly shit.

3. I don’t know where you live but in this trust you can’t just book yourself an ambulance whenever you want one. They are in extremely short supply, even patient transport none emergency ones- so they should not be being used to attend a clinic which is going against practice guidelines in insisting its patients attend unnecessarily when they are not well enough.

The NICE guidelines don't say people with ME/ CFS can't be moved for tests or treatment

No- they say that the clinic should not discharge patients if they are unable to attend.

If you are well enough, excellent- you can move/be moved for testing- if not you anre held on the books until you are well enough to attend.

@Whatsortofrockareyou I have booked private transport for a relative who can not transfer into a car. It has a tail lift and means you can be wheeled from your bed and never have to get out of the wheelchair. Unless you are very rural, they will exist.
I am aware there is criteria to book hospital transport. The criteria is people who can not get to the hospital any other way.
Weakness which OP says she has means you can be helped into a wheelchair at the side of your bed and simply sit in until back home. Vomiting requires carrying something to be sick into. Vomiting is not unusual for people undergoing chemo and having to attend hospital.
I am not saying it is not hard, it is. It is something many severely ill people have to deal with when attending hospital. And they do get discharged if they do not attend.