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

Regarding the Reasonable Adjustments Digital Flag, I see there is little opportunity for nuance, fluctuating needs, or needs that are only relevant in certain environments. This makes sense in order to keep it simple and easy to use, but I wonder how my consultation would go with a doctor who see's 'has light sensitivity' on my record, and finds me coping just fine with the light in the waiting room on a day where my light sensitivity is not a problem. It appears that detail can be added to the coded adjustment, but people may not read that detail.

It would take me time to decide how to complete this so that it was relevant to different environments, at different times, and in a way that didn't potentially expose me problems arising from stigma. I may ask to have the disability status recorded ("Impairment with substantial and long-term adverse effect on normal day to day activity (Equality Act 2010)") and perhaps the 'stamina..fatigue', 'mobility' and 'other' boxes checked and leave it at that so that conversations about the particulars can be had as needed.
 
Haveyoutriedyoga said:
Regarding the Reasonable Adjustments Digital Flag, I see there is little opportunity for nuance, fluctuating needs, or needs that are only relevant in certain environments...It appears that detail can be added to the coded adjustment, but people may not read that detail.

It would take me time to decide how to complete this so that it was relevant to different environments, at different times, and in a way that didn't potentially expose me problems arising from stigma. I may ask to have the disability status recorded ("Impairment with substantial and long-term adverse effect on normal day to day activity (Equality Act 2010)") and perhaps the 'stamina..fatigue', 'mobility' and 'other' boxes checked and leave it at that so that conversations about the particulars can be had as needed.
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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.
 
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Dx Revision Watch said:
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.
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It has been rolled out to people with learning and disabilities and autism across the country through quite a significant programme of work, I gather plans to implement it more widely should follow (in theory).
 
NelliePledge said:
That reasonable adjustment form is very interesting @Haveyoutriedyoga
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To covey variability of symptoms and needs and the relevance of the context (GP appointment, inpatient etc.), columns could allow you to tick whether the adjustment need applies always, sometimes depending on symptom fluctuation and context, or always. This would probably be too much detail for the Reasonable Adjustment Digital Flag record but could be useful for one’s own planning or could be shared directly with a specific healthcare team as needed.

Keeping the overall non-specific list of adjustments relevant to all conditions is useful for people who have multiple conditions that cause a need for adjustments, and means that you don’t have to disclose a particular condition.

There is a risk that when presented with a menu, people tick adjustments that would make their experience better, but are not necessary in order for their experience to be “as easy as a person without a disability to use services”, and not due to their disability / long term disabling condition(s). I think it is up to the individual to decide what they ask for and to have the conversation with the service provider, but any guide or tool should define “reasonable adjustment” for the reader.
 
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.
 
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!!!
 
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.
 
Sasha said:
Not sure if this useless AfME hospital passport for PwME has been linked to.
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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?
 
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Ash said:
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.

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?
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There’s one for learning disabilities and autism that is more like your description
 
@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.
 
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obeat said:
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!!!
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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.
 
obeat said:
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!!!
Click to expand...
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
 
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