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

Possibly a repeat of other comment.

Specialist doctor and nurse care.

Help with medication for ease of symptoms where applies.

No get fix quick attitudes.

Understanding of greater sensitivity to medications especially in the severe years.

Interaction between specialist and hospital staff on hospital admission for more ease of care in hospital situations.
 
Some repeats but worth emphasising these points I think:

- Advice to GP requesting domicillary visits as needed for other conditions (currently I have to go private/go to an online pharmacy)

- No activity goals / pacing up

- Accepting patient rooms may be unusually dark and/or warm

- Domicillary OT visits for mobility equipment and home adaptations

- Option of phone/video for follow up (less tiring for some than in person visit)

- Text/WhatsApp service as well as phone line so patients can interact on their schedule

- Advice to hospital teams on reasonable adjustments for treatment for other conditions



Also I think it’s worth reiterating how emotional it is to compile a list like this. My first feeling is terror: hitherto, severe patients have been able to avoid the rehabbers since there are (almost) no services for us. The prospect of coming out of the cold and falling within the NHS ambit is petrifying.

My second feeling is hope. What it would be to have access to these services! Behind “domicillary OT visits” are all the years of slow, exhausting research and expensive purchases to try to get some measure of autonomy. And so on for every item. Each represents hard won insight, and papers over distressing experiences.

And then come grief and anger. All the years without help which could have been waved away by an administrator’s keypad.

Then back to terror. The administrators who might now offer new services can withdraw them just as easily - or, more likely, give them to rehabbers to gut.




So the last one:

- Recognise that many patients will have experienced previous iatrogenic trauma, and prioritise honesty, patient control and building trust
 
Some other thoughts which may be of use to draw from, more implementation details so maybe mot the direction we should take but still

Regular ongoing contact (rather than only for emergency interventions or referral for a fixed period before being discharged back to a GP)

Based on ongoing patient support and improving NHS understanding and care (rather than an aim to improve the patient)

A ban on use of any patient questionnaires (maybe let them have 3 limited scope questions once a year)

Liaise with other services as needed and represent the patient’s best interests and safety

Ensure patient records and short summary notes accurately reflect condition and needs

All hospitals should have an up to date and published plan for dealing with admissions (for severe and v severe patients)
 
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