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

[Haveyoutriedyoga]

And here

 

[NelliePledge]

It just seems so antiquated to do this through massive overwhelming documents surely there are people with the skills to use an online form/questionnaire format where you work through questions and your responses are used to produce the output report tailored to you rather than 10 pages of irrelevant material.

 

[Haveyoutriedyoga]

When I knew I was going to be admitted to the Brompton a few years ago for heart tests over several days, it was very helpful to have a letter from Dr Bansal for the heart Consultant explaining how to ensure the illness was not made worse by the investigations.

He wrote a letter about two thirds of a side long, advising spreading out tests so that I had rests in between for recovery, that physio should be not be too pressured, I can't remember more, but I was very glad to have it when on coming round from anaesthesia, I was asked to immediately do an additional test, a stress echo. They were perplexed when I refused but in the context of the letter explaining that testing should be spread out, it was understood and was arranged for me to come back to complete that test which I did. I had no ill effects from the testing.

A useful document.

something like this would be very helpful. I would combine that with the page from the MEA pack which allows you to write three things you need.

I did try to complete an autism passport as an experiment before the MEA pack was released, it didn’t suit my needs in terms of my various physical health conditions but there was some overlap in themes.

 

[Sasha]

All trusts now have a version of an autism passport e.g. here's one

I'm surprised that patients are being sent into hospital clutching such lengthy documents.

 

[darrellpf]

I've been going to the same infectious disease doc for the past 15 years, 4 visits a year. He has been really good when I suggest things to try but I've pretty much always driven things.

I realized this week that he has never done anything other than the standard "sit in the chairs and wait". There has never been an offer to lie down in the mostly empty exam rooms.

I had what eventually became an "emergency" TURP. I spent two days lying in a quiet room before I worked up the energy and nerve to go. Our ER's are largely "shut up and wait your turn". They would have laughed at me if I'd requested a quiet room to lie down due to ME/CFS and autism.

10 hours sitting in emergency first day. 8 hours the second day waiting to ultrasound and results. Sent home with a catheter. Back 6 hours later when it's drained three bags of mostly blood. Collapsed in the emergency room and admitted.

The good news was the private room. No TV or radio, no noise. No autistic routines, just bed rest. I felt good for the next month, even while recuperating.

Practically speaking, nobody in emergency is going to read anything more than a paragraph. Finding a GP who would read a basic ME/CFS document might work, but I'm probably more of a subject matter expert than most of the doctors in British Columbia.

So yes, unfortunately mostly I avoid the medical system here completely.

 

[Sasha]

It just seems so antiquated to do this through massive overwhelming documents surely there are people with the skills to use an online form/questionnaire format where you work through questions and your responses are used to produce the output report tailored to you rather than 10 pages of irrelevant material.

I wonder if the ideal would be a document that provided a menu of simple statements, such as, 'I have orthostatic intolerance, a form of dysautonomia, that means I need to lie flat for most of the time and become much more ill if I don't', where people could delete the ones that don't apply and that would boil down to the 2/3 page that @Jonathan Edwards is wisely aiming for. I think have well-prewritten options would be a huge help.

 

[Dx Revision Watch]

For NHS Scotland: Key Information Summary (KIS):

https://www.scimp.scot.nhs.uk/wp-content/uploads/2013-04-05-KIS-Patient-FAQs-v2.01.pdf


For NHS England there is the Reasonable Adjustments Digital Flag (RADF):

https://digital.nhs.uk/services/reasonable-adjustment-flag

"The Reasonable Adjustment Flag was developed in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated."


Primary and secondary care is supposed to be identifying patients for whom reasonable adjustments and adaptations are appropriate in order that key adjustments can be added to the patient's NHS Spine record with the patient's consent.

But it is possible to ask your GP practice for key information to be added to the Spine and work with them on what information is included.

 

[Haveyoutriedyoga]

I wonder if the ideal would be a document that provided a menu of simple statements, such as, 'I have orthostatic intolerance, a form of dysautonomia, that means I need to lie flat for most of the time and become much more ill if I don't', where people could delete the ones that don't apply and that would boil down to the 2/3 page that @Jonathan Edwards is wisely aiming for. I think have well-prewritten options would be a huge help.

@bobbler started a thread about this but I can't find it

Edit: here it is New reasonable adjustments for hospitals - can we hive mind a list to add?

 

[Haveyoutriedyoga]

For NHS Scotland: Key Information Summary (KIS):

https://www.scimp.scot.nhs.uk/wp-content/uploads/2013-04-05-KIS-Patient-FAQs-v2.01.pdf


For NHS England there is the Reasonable Adjustments Digital Flag (RADF):

https://digital.nhs.uk/services/reasonable-adjustment-flag

"The Reasonable Adjustment Flag was developed in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated."


Primary and secondary care is supposed to be identifying patients for whom reasonable adjustments and adaptations are appropriate in order that key adjustments can be added to the patient's NHS Spine record with the patient's consent.

But it is possible to ask your GP practice for key information to be added to the Spine and work with them on what information is included.

This is very general and so would require some thought on what adjustments are needed in all different settings of care, beyond just when admitted to hospital. It would also require one to be comfortable with any professional reading it as opposed to only handing information to people as and when you want them to have it.

 

[Dx Revision Watch]

I downloaded the pack last week as the adult with ME for whom I am carer has a hospital procedure under GA coming up in the next few weeks.

I agree that the pack is too long. Also, unless I have missed it, the pack does not mention the Reasonable Adjustments Digital Flag (RADF).

 

[Sasha]

"The Reasonable Adjustment Flag was developed in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated."

This is incredible. I've desperately needed this for decades and I've never heard of it. Has any PwME here heard of it and managed to get their issues recorded?

 

[Haveyoutriedyoga]

This is incredible. I've desperately needed this for decades and I've never heard of it. Has any PwME here heard of it and managed to get their issues recorded?

@Kitty was it you who asked their GP to record something?

Edit: yes it was - thread here!

 

[Dx Revision Watch]

@Kitty was it you who asked their GP to record something?

Edit: yes it was - thread here!

I note that one poster in that thread has said:

...That said its not without risk, in terms of what is actually said within the flag, readers interpretations of it - what about when one wants to avoid the 'ME/CFS' stigma & not announce it etc. It may have pros & cons

If a diagnosis of ME/CFS has been recorded in the patient's Summary Care Record, that diagnosis will show in the Spine anyway unless the patient has not consented to the SCR being accessible to secondary care staff, pharmacists, paramedics etc or has asked for specific information to be omitted.

Our local hospitals don't have access to the full GP electronic medical record but do have access to the GP Summary Care Record which lists allergies, medications, lists of diagnoses etc. They also have access to blood test results ordered by GPs as these are processed by the hospital's labs.

In fact, at a recent appointment at the pre-procedure assessment clinic, the nurse noted that a diagnosis had not been recorded in the SCR although the medication prescribed for that condition had been listed and suggested that the GP practice was asked to add the condition to the Summary Care Record.

If you have access to your medical records via an online portal, phone app or NHS app, you may be able to view some or all of your Summary Care Record. In ours, we can only see allergies and current medications. It's worth asking for a printed copy of the most recent version of your SCR (they are apparently updated automatically following each clinical contact with the practice) to see what has and what has not been included (and also to ask for any errors to be corrected).

You can also ask for other information to be added to the SCR.

 

[Haveyoutriedyoga]

I note that one poster in that thread has said:




If a diagnosis of ME/CFS has been recorded in the patient's Summary Care Record, that diagnosis will show in the Spine anyway unless the patient has not consented to the SCR being accessible to secondary care staff, pharmacists, paramedics etc or has asked for specific information to be omitted.

Our local hospitals don't have access to the full GP electronic medical record but do have access to the GP Summary Care Record which lists allergies, medications, lists of diagnoses etc. They also have access to blood test results ordered by GPs as these are processed by the hospital's labs.

In fact, at a recent appointment at the pre-procedure assessment clinic, the nurse noted that a diagnosis had not been recorded in the SCR although the medication prescribed for that condition had been listed and suggested that the GP practice was asked to add the condition to the Summary Care Record.

If you have access to your medical records via an online portal, phone app or NHS app, you may be able to view some or all of your Summary Care Record. In ours, we can only see allergies and current medications. It's worth asking for a printed copy of the most recent version of your SCR (they are apparently updated automatically following each clinical contact with the practice) to see what has and what has not been included (and also to ask for any errors to be corrected).

You can also ask for other information to be added to the SCR.

I am sure many of my dx's have not been added, when asking a nurse for adjustments to a pre-procedure process she said there was nothing on my record to say that I had the condition that the need resulted from.

But on my app I can see recent additions e.g. headache - significance: minor.

 

[Dx Revision Watch]

This is incredible. I've desperately needed this for decades and I've never heard of it. Has any PwME here heard of it and managed to get their issues recorded?

(Carer here) I was aware that patients could ask for additional information to be added to their GP Summary Care Record, which is accessible to secondary care, but had not heard of the Reasonable Adjustments Flag in the Spine until a few days ago when someone mentioned it on Twitter/X.

This is a guide for services for creating RA Flags, obtaining consent for Flags etc:

https://digital.nhs.uk/services/rea...-using-the-reasonable-adjustment-flag-in-ncrs

 

[Dx Revision Watch]

I am sure many of my dx's have not been added, when asking a nurse for adjustments to a pre-procedure process she said there was nothing on my record to say that I had the condition that the need resulted from.

But on my app I can see recent additions e.g. headache - significance: minor.

Is your app showing the SCR or the GP's "free" clinical notes?

My understanding is that extraction of information from GP clinical notes for inclusion in the SCR is done electronically and it does appear to be a bit hit and miss with what gets picked up for inclusion in the SCR.

I haven't seen a copy of my own SCR for some years now, when I was given a print out to take to an appointment at an emergency eye clinic. Diagnoses listed went back to 1980. Some information was wrong and I asked for that to be corrected.

 

[Haveyoutriedyoga]

Stamina, breathing of fatigue is one of the 'impairments' on the reasonable adjustments flag system

 

[Haveyoutriedyoga]

Is your app showing the SCR or the GP's "free" clinical notes?

My understanding is that extraction of information from GP clinical notes for inclusion in the SCR is done electronically and it does appear to be a bit hit and miss with what gets picked up for inclusion in the SCR.

I haven't seen a copy of my own SCR for some years now, when I was given a print out to take to an appointment at an emergency eye clinic. Diagnoses listed went back to 1980. Some information was wrong and I asked for that to be corrected.

It appears to be the GP's free notes, there's a section for documents sent from other organisations, one for test results, allergies, medications.

 

[Dx Revision Watch]

There is a list here of which NHS settings have access to the Summary Care Record (see under heading "Who is included")

https://digital.nhs.uk/services/summary-care-records-scr

See also "What information is held for each patient":

"At a minimum, the SCR contains important information about:

• current medication
• allergies and details of any previous reactions to medicines
• the name, address, date of birth and NHS number of the patient

In addition, details of long-term conditions, significant medical history, or specific communications needs, is now included by default for patients with an SCR, unless they have previously told the NHS that they did not want this information to be shared. For more information, see Additional Information in the SCR."


"How this service works

For patients
1. Your SCR is created automatically when registered with a GP practice in England. 98% of practices are currently using the system.

2. You can talk to your practice about opting out of including Additional Information about long term conditions, care preferences or specific communication needs.

For more information for patients, see Summary Care Records - information for patients.

GP information on creating SCRs and including additional information
1. SCR is created automatically through clinical systems in GP practices and uploaded to Spine.

2. It is then updated automatically.

3. When new patients are registered, the practice must check if the patient consents to a SCR.

4. Additional information will be added to the SCR, unless a patient wishes to opt out, which they can do by filling out a SCR patient consent preference form.

5. If a health care professional already has access to view SCRs, they will not require further RBAC activities or smartcard changes to view the additional information included on the SCR."

 

[Haveyoutriedyoga]

The Reasonable Adjustment Digital Flag Requirements Specification (2nd of the three documents linked) has lists of reasonable adjustments.

Annex B (p54) is a list of categories of adjustments, but does not define all possible adjustments.

EDIT: here's a form with examples of adjustments, published by a medical centre.

EDIT: SNOMED codes for adjustments (list looks the same as the list above)