First I want to say a big thank you to you all for taking the trouble to give such detailed feedback. I don't have a medical background (which obviously shows) and haven't done anything like this before, so the documents are bound to need revision. I did refer extensively to the ICC and CCC when writing the documents.
The service is currently therapy led and
very overstretched, based within a community service with limitations in oversight and management support. It was in this context that the Patient/Carer group was asked to prepare GP awareness documents - but they had to be brief. We have been told that GP's simply wont be interested if the awareness documents are too long. This was the thinking behind mind maps. There is no ongoing care provided so GP side of care is very important.
@Jonathan Edwards - I take your point about references, when the documents are finalised I was going to include a list of references (possibly something along the lines of the format in the MOM).
The problem regarding referral is that we do not currently have a consultant lead (although we are working on that). The specialist service offers diagnosis (usually via GPwSI) and about 4 therapy sessions and then discharges back into the care of the GP. Also a patient can be unwell for months before referral, then have to wait 18 weeks after referral, so one of the aims of the document was to try address the gaps in care. Also to get GP's thinking about referral for diagnosis at an early stage by raising awareness of specific symptom patterns.
@eafw I'd like to get this done in the next week or so. Thank you for the points you have raised.
1) POTS test - good idea easy to do as a matter of course
2) Sleep - do you mean hyposomnia in early stages which some experience? (My sleep was dreadful from the start & early sleep management advice may have helped)
Light - another good point, it's something that Sarah Myhill talks about too.
3) Yes, PMT, menstrual and menopause need to go in there too.
4) Yes, you are right again - better prognosis for the children and YP
5) I don't think I have thought through clearly enough how to pitch the level of awareness, I will give it some more consideration, thank you.
@JaimeS thank you for your thoughts.
1) Yes that's a typo
2) Yes, as you suggested I moved the 'pre-dispositions' to the 'characterised by' in the second version as I agree it makes more sense there.
3) Yes, dysfunction is better.
4) Not sure why I put cardiovascular as two words - doh!
Thanks for the feedback about the Priorities document - I agree there is too much squeezed in. Plus I need to think much more carefully about level of awareness among GP's - and how best to address this. Thank you for your offer of further feedback, its much appreciated.
@BurnA please be assured, I wont be offended, it can be hard to read critisim but at the end of the day the documents need to be improved, and I am grateful for the time taken to help me do this.
You are right I need to give more thought to the colours in the Priorities document. I was trying to split into overall topics, using colour, but it does lack coherance and logic.
Ah I see what you mean re the switch between symptoms & techniques - that is muddled and needs revising. Whoops you are right, delay is duplicated. I dithered over the 4-6 months issue, I personally think it is far too long, especially when you add in possible 18 weeks referral time. Can you recall the research you were referring to regarding this?
I did try to differentiate between maximising sleep and effective rest and relaxation, as they are different things.
As you said at the begining, a big problem is the vagueness of the brief. Our group is aware that GP awareness is a problem, and also reluctance to prescribe medications for symptom control. (the service is currently non-prescribing) What I wanted to do was to provide GPs with avenues to consider regarding meds for symptoms and advice to give their patients for management, both prior to diagnosis and after the patient has been discharged from the specialsist service. As I said earlier I did refer to the CCC and ICP and had intended to include a list of references with the mind maps to back up the content.
The patient/carer group are doing this because it won't be done otherwise - the service simply doesn't have the resources. Thanks again for your feedback, it's a big task, and it really helps to have detailed input.
Well, this has been very useful. Themes have emerged and errors spotted. I think I need to start again with the priorities document. Thankyou everyone for your help and I'll post the updated document when I have written it - if I dont throw the laptop in the pond in frustration first!