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
Agree on the terror but also noting that it’s actual risk , catastrophic risk of irreversible harm
Emphasizing trauma is NOT ‘emotional’ and not going to be tackled with deceit or ‘therapy’ but safety, integrity and time - even if those trained to be pretend trustworthy don’t realise that’s what they are doing. It’ll take years of straightforwardness for me to trust a person now. Rightly so. I will feel unsafe and risking myself engaging until then.
I have concerns the safeguarding note is on the original request suggesting family members - ‘in the name of’ safeguarding has been weaponised and caused huge harm
Agree on other hand if it’s talking to family, friends etc about bps stuff being wrong.
Remember alternatives of carer options are also scary/difficult so need support on that not being challenged based
Understand the sleep reversals and worse not assuming it’s just sleeping tablets and how sleep hygiene can harm.
In fact don’t write secret notes - given what’s happened to many of us. And how unwell we are in appointments we can’t watch all our words and body language
Issue of old notes being taken literally. Needs someone knowing the context of what machine/biases patients got put through
If we are going near a hospital protect us from liaison psych dropping in/drs with bps theories type risk
Removal of any approach of seeking out psych problems as knee jerk first instinct as if severe is an illness used as cover as those done disservice to with bad notes get that snowballed. Most of us will be risking a lot and terrified during visits.
Removal of multidisciplinary teams where rumours can be made up and people feel their life is violated and studied.
You know stuff that isn’t about medical dept more like seeing patients and families as on probation for crimes /assuming dysfunction must be found or made up
Banning personality terms or beliefs to be used by staff
Big concerns about any staff starting their experience/ learning from milder patients in early years or being into any therapy hobbies
Agree on the questionnaire ban - any sign of that will confirm they don’t respect or get how ill we are /aren’t serious
Don’t just give advice to patients on illness without dept providing support to make it clear to GP, employers/bebefuts/form stuff/support agencies. We aren’t then believed
Advocacy service for sorting key of aspects of life. Inc help someone extremely ill to make accommodation quiet and suitable. We can’t liaise or be believed by any service that might help.
We don’t want to be stuck into a care home (noise etc). Reassured us that’s understood.
Needs eg nurse liaison with wheelchair, equipment etc services as assessments too much and get played by /too hard a communication job given old myths.
Access needs to start well before very severe. And ongoing.
Severe need support to avoid very severe and needs to be a quick to access ramp up option if either are deteriorating. Can be crisis points where fast sorting/trying things makes the difference.
Home visits and phone needed. I’d prefer consistent staff due to communication load and trust.
Booking and admin issues also need to be thought of.
Home Blood test options
Understanding of communication limits/impact but need for autonomy - staff to be informed by experience with severe/very severe needs and wishes to help load can make suggestions etc
Issue of poor GPs - more services need to be delivered by clinic or power given to requests made (so they can’t just be ignored) if something to be delivered by GP.
Access to sensible tests for differential or comorbid issues. With adjustments
Offer things that help like b12 and proper medicine so an individual can have things looked into and treated that affect them rather than being in nhs fight because on its own that’s deemed low bar (but when you’ve also this it makes a difference). Like sinus stuff or skin issues.
Train other nurses/staff so some other departments have safe staff - not the bacme ones - a student nurse was interested to know more on a recent operation.
