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
