A new support pack for anyone with ME/CFS going to hospital (MEA)

There is already one - started in June (which I wasn't aware of when I posted links to the RADF in this thread):

https://www.s4me.info/threads/united-kingdom-nhs-reasonable-adjustments-digital-flag.39214/

 

Yes, I can see that lack of nuance and fluctuating needs could be problematic.

Incidentally, although hospital clinic staff are supposed to be identifying patients who require adjustments there was no reference made to the RADF, by name, that I can recall, at my son's pre-assessment at the beginning of October; nor on the lengthy medical history forms* he was asked to complete while he was waiting to be seen.

*Which included two pages of detailed questions on alcohol use and its impact on the patient's behaviour.

 

I have severe me and needed surgery three years ago. I had an A4 sheet with 12 bullet points which my sister discussed with the admitting nurse, the information was then loaded on the computer so that the ward had direct access to it.

Unfortunately the first operation was not successful which meant I needed further tests before a second operation but the surgeon was agreeable to space out the tests.

 

Any thoughts about taking this forward, @Jonathan Edwards? Could people here help?

 

Not sure if this useless AfME hospital passport for PwME has been linked to.

 

I needed surgery in 2021 and fortunately my local hospital has single rooms in the surgical ward and I also have support from my two sisters.

This is the checklist we used when talking to staff. All the information that is given to the admitting nurse is automatically transferred to the ward, but my admitting nurse also talked directly to the theatre staff when she handed me over.

Care plan

ME/CFS is a chronic debilitating illness of unknown aetiology.

1.NICE guidelines 2021, severe ME/CFS patients need a single room( if possible) and telephone appointment/home visits to prevent deterioration.

2. Needs to lie flat at all times with a pillow under knees and arms.( orthostatic intolerance) Roll transfers to reduce muscle usage.

3. Low level light/ sound needed. Use eye masks and earplugs.

4. Finds conversation difficult so essential information only.

5. Finds chewing/cutting up food exhausting so meals of porridge, soup, custard etc.

6. Prefer to be washed and dressed by my sister as both touch and pressure can be painful.

7. Bladder care. I am not incontinent but it would reduce general weakness and post-exertional malaise, if I could use incontinence pads.

8. Bowel care,bed pan.

9.If possible do not use MRI scans as they take too long and are far too noisy.

10. Anaesthesia

Beta blockers cause prolonged drop in blood pressure,heart rate and cognitive function.
Need anti nausea drugs.
Fasting can trigger a migraine. It took 10 months to recover from previous surgery.

11. Facilitate a rapid discharge as soon as the doctor says I am medically fit to leave to prevent deterioration.i.e.in morning rather than wait for the usual afternoon discharge..

The list is very basic but it covered my care needs in a surgical ward. At home I am not as disabled as this but deliberately planned for the worst day of symptoms I have experienced.



There were complications with my first operation so I ended up being acutely ill for 48 hours on top of post-exertion malaise, but weirdly euphoric for the first 24 hours because I'd had so much morphine!

In general staff were accommodating, some were curious ,some were indifferent but only two were “hostile”.

My other tip is to have a small bag that you can keep on your bed with essentials like phone, reading glasses, tissues hand sanitiser.

The tea lady said to me on my second day post op “ you lie so still you never move” and I thought to myself she should have been a doctor with her powers of observation!!!

 

That sort of simple but precise list looks a good option to me.
It sounds as if it went down OK.

 

Thanks, @obeat - that looks like an excellent list. I'm sorry it took you 10 months to recover from a previous surgery and hope this list helped in 2021.

Did you find that the hospital staff understood what orthostatic intolerance was? I find I get a lot of blank looks and have to explain it, which makes me worried that they think I've just invented it. This is partly why I've wondered whether we need a document with the authority of our GP at least behind it, although in a world where we weren't disbelieved, your kind of list would be perfect and is anyway maybe the best thing in the world we're in.

 

I’ve just followed the link….

When people referred to “passports” for hospital I’ve been under the impression right up to a few seconds ago that this was more of a term of speech for having your personal needs down on a printable form with the added embarrassment of a charity logo on it.

Not that it’d look like a charity fact sheet all extraneous graphic and colour had a baby with a passport application form.

Did I block this knowledge from my mind or did I never know….They’re not always like this are they?

 

@Sasha I don't think anyone I met understood orthostatic intolerance but they accepted that I needed to lie flat and my other needs and that was the important thing. Surgical staff want to get you through your operation safely and home as soon as possible, so they appreciate clear instructions on how it look after you.

 

Thanks so much for sharing all this information and detail @obeat!

I feel inspired to try and write something for myself incase I have to stay at hospital as this is something everyone dreads maybe this would make a bad situation a little less stressful.

 

I may need surgery in the semi-near future, would you mind if i copied your post to a word doc to use as a template for myself?

Sorry you had such a crap time & well done for sorting this out for yourself it seems really good

 

@JemPD please copy it if it helps. Take in plenty of ear plugs because they get lost so easily in the bed.