What people who are very severely affected would most want from a service.

Jonathan Edwards

Jonathan Edwards

Senior Member (Voting Rights)
Sasha has asked if we could answer this question fromCaroline Leary of ForwardME.
There is a meeting on Thursday.

I suggest members chip in with up to six suggestions of not more than on one line each. These could then be listed and a poll on priority set up.
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Edit: the main proposals so far seem to be as follows. It might be useful to rate them by priority but I am not sure how you do a poll like that or whether it is really helpful:

Ongoing support and maintenance, not short-term rehabilitation courses (close these services)

No discharge or patient initiated follow-up system

Primarily delivered by physician and specialist nurses (not physio, OT, psychologists)

The same medical team for all severities, as for MS and Parkinson’s, no fragmentation into moderate vs severe

Consultant led initial management of any eating/feeding issues and liaison with specialised hospital services if non oral or alternative feeding is required

Domiciliary doctor and nurse visits, for both severe and very severe, covering both me/cfs and non me/cfs needs. (vaccinations, bloodwork, dealing with injuries from falls, etc to avoid going to A&E)

Specialist nurse phoneline for support

Referral to OT for home adaptations as required

Continuity of care (from the same people over time so patients can build a relationship and understanding

Not constantly trying to get you to try this month’s quackery.

Flexibility over communication methods and visit times

Intervention if family is abusing or neglecting patient

Information in verbal and written form for family members

Advocacy role for physician and specialist nurses when dealing with broader health service, benefits and other support

Sedating type medication for worst phases with suitable precautions

Sensory accommodations if in hospital

Specialist inpatient assessment units in university hospital centres

Long term care facilities for those who cannot live at home

Recognition of the exceptionally vulnerable status of children with severe illness, whose families may be accused of FII.

Integration of research into care services in specialist university centres to identify meaningful treatment, including access to sever and very severe patients for study at home
 
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Some suggestions -

Home doctor visits when necessary
Sensory accommodations if in hospital
Intervention if family is abusing or neglecting patient
Specialist nurse phoneline for support
Specialist doctor advocacy service for when MECfS patients are dealing with broader health service
Sedating type medication for worst phases with suitable precautions
 
I always get confused on the line between severe/v severe and exactly who these services are targeted at but we had some discussion and there are ideas in this thread https://s4me.info/threads/our-own-delivery-plan.45305/

I’ll see if I can pull out some more one line asks from there over the next day or two but to start

Domiciliary care for all non me/cfs needs. (From vaccinations and bloodwork to dealing with injuries from falls, cuts, burns etc so we people don’t have to go to A&E)

Consistency and continuity of care (delivered by the same people over time so patients can build up a relationship and understanding with them

Primarily delivered by specialist nurses and doctors (rather than physios, OTs and psychologists)

Flexibility over communication methods and visit times (with no guilt cancellations to fit around the patient’s needs)
 
Will try to write it as points, but want to stress that current UK rehabilitation based specialist services should not serve as a model for this service development for the severe and very severe, rather we need a domiciliary service that includes a consultant/medical specialist to over see medical care and a specialist nurse to provide a link/buffer between the carers/patient and other services.
  • We don’t need a rehabilitation service model, rather support and maintenance model of delivery
  • Service should be consultant led to over see medication and liaise with hospital services when necessary
  • Consultant lead should provide initial management of any eating/feeding issues and liaise with hospital services if non oral or alternative feeding is required
  • Specialist nurse to provide direct contact with the patient if an option or with family/carer when not
  • The specialist nurse would serve a key worker role in relation to any other professional involvement, especially when it is not appropriate for others to have direct interaction with the patient
  • The nurse/consultant would have an advocacy role for the patient/carers in relation benefits/support and ensuring appropriate care/environment should hospital admission be required
  • Consideration should be given for specialist inpatient assessment units
(May have cross posted with others)
 
hotblack said:
I always get confused on the line between severe/v severe and exactly who these services are targeted at but we had some discussion and there are ideas in this thread https://s4me.info/threads/our-own-delivery-plan.45305/

I’ll see if I can pull out some more one line asks from there over the next day or two but to start

Domiciliary care for all non me/cfs needs. (From vaccinations and bloodwork to dealing with injuries from falls, cuts, burns etc so we people don’t have to go to A&E)

Consistency and continuity of care (delivered by the same people over time so patients can build up a relationship and understanding with them

Primarily delivered by specialist nurses and doctors (rather than physios, OTs and psychologists)

Flexibility over communication methods and visit times (with no guilt cancellations to fit around the patient’s needs)
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100% this

also,

knowledge on when to consider feeding help and knowing the right people to contact.

and offer occasional (but optional) relevant blood panels ie. bone chemistry, sanity checks for other possible causes of recently appearing symptoms, that kind of stuff.

and not constantly trying to get you to try this month’s quackery.

Edit: And understanding that a pwME might not be able to communicate at all. And that for some people they can’t be spoken to at all without getting PEM.
 
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Deliberately not reading anyone else’s until after I have jotted down my first impressions.

Fluctuating mid/sev so not qualified enough. But family members with cancer so I have this in mind as I write:

1. Specialist consultants (how to train them in the first place is an issue? ) to deal with nutrition, medical procedures etc. Perhaps start with 2 or 3 in UK for most ill patients and crisis situations.

2. Safe In patient facilities spread out over the UK - one ward in a hospital that is safe. Ideally increase to at least one ward per health authority.

3. Higher pay grade nurses attached to those wards who also act as named point of nurse contact who visits homes regularly.

4. Appropriate nutritional support.

5. Benefits support.

6. Home adaptations, daily care / respite for family
 
Also replying before looking at other people's ideas.

I'd like the specialist service to help severely affected PwME access specialist care for other conditions that arise but that PwME can't currently access because they are too sick to leave home and go to the GP surgery or hospital clinic. These may not even be serious things initially but can become serious if left undiagnosed or untreated.

I'd also like the service to set up some sort of system to make sure that severely ill PwME can be safely transported to, from, and around the hospital - horizontally, on a trolley, whether they're attending the ME/CFS clinic or another. Lots of severely ill PwME no longer have the social support systems that mean that they have friends or family who can transport them around, and dealing with taxis is way beyond a severly ill PwME. The severely ill need ambulance transport, not just to the hospital but home from it, and need to be trolleyed around while in the hospital. Hospitals are way too big and journeys within them way too long for even a wheelchair to be tolerable.

Waiting rooms (a last resort - ideally a PwME would be able to wait in a side-room to avoid infection) should be able to accommodate PwME lying down due to orthostatic intolerance, again, anywhere in the hospital.

Also, N95 masks all the way.

I'd want the specialist service to understand about feeding desperately ill PwME, and to be in charge of it, and to advise hospitals where there is no such specialist service. We need to avoid any more unnecessary deaths.

It would be good if the service could provide an information sheet for family members, to persuade the sceptical that this isn't a psychological condition. Having such a sheet come from a charity is one thing but having it come from the NHS is another.
 
Specialist nurses, to do personal care directly where needed, and to protect patients from harm by liaising with other services for them and being a point of information for their families.

If the government won't hear of the idea of funding these roles (bearing in mind the recruitment and retention crisis across the NHS in general) then the charities need to be looking at fundraising for something along the lines of Macmillan nurses.
 
Jonathan Edwards said:
Those aren't single lines @Sasha .
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Oops, sorry! Had forgotten that by the time I was replying. Here they are as single lines.

Help get access to specialist care at home for other conditions that arise that a GP can't deal with.

Ensure ambulance/trolley transport to, from and around the hospital for whatever issue a PwME is attending.

Waiting rooms to accommodate PwME lying down due to orthostatic intolerance.

N95 masks worn to protect PwME.

Feeding support if necessary for desperately ill PwME, and advice to other hospitals.

Information sheet from the specialist service for family members, making clear that this isn't a psychological condition.
 
Appropriate long term care facilities for those who can’t live at home

Appropriate assistance at home, inc. support for caretakers and family

Healthcare (as broadly defined as possible) at home as far as possible

Appropriate accommodations when having to go somewhere (particularly for healthcare reasons)

No BPS or biobabble, and clinicians that can effectively intervene if exposed to it

Appropriate recognition in the welfare system
 
- IV fluids at home when dehydrated instead of A&E

- Tube feeding at home when malnourished instead of hospital admission

- Home visits - doctors, OTs, Physio, nurses, dietician, speech and language, social work. Specialists home visits would be great also eg. Neurology, dentistry etc.

- practical day to day support ie personal assistant hours

- more support for accessing services, filling in forms, admin/advocacy type support (many services will only help so much)

- staff with a good understanding of the illness, especially what it means at severe/very severe level

- Specialist housing and hospital wards for mecfs, with appropriate accomodations
 
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V.R.T. said:
All of this looks good. I would add:

Integration with biomedical research centres, with the opportunity to participate from home in good quality research and clinical trials when they occur.
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A thousand times yes. I believe part of the answer lies with bedridden patients. We surely have the same condition, but in a more pronounced form and perhaps certain indicators are more easily observable in such cases.
 
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