Absolutely. When I was in hospital the nurse that showed an interest in understanding ME/CFS went straight to that site to learn more (on his...
This is the information I received from the Bedford clinic when I made some inquiries about their service in August this year (before the NICE...
Yes. I would definitely quote the relevant parts of the new NICE guideline in any form I do from now on as I wouldn't trust the HCP to have read...
The HCP doesn't directly ask to see a Care Plan, but rather they may make assumptions about the PWME if they haven't seen evidence of being under...
I'm sure you will be fine if your GP is supportive and provides good medical evidence for you anyway. But lots of PWME have struggled to get their...
That's why I would push for a formal Care and Support Plan and an annual review, because this then can be submitted as evidence.
Yes, but most PWME learnt they needed to avoid the specialist clinics under the old guidelines, and GPs ignored the other parts of the guideline....
It was really not possible to push the 'good parts' of the old guideline in terms of getting better care, as there was so much bad in them....
The new guidelines have separated out the 'Care and support plan' from the 'Management plan'. So you should still have the former even if you...
Under the new NICE guidelines the Care Plan is supposed to be drawn up by a specialist ME/CFS clinic, not the GP. Then the GP is able to do the...
Maybe you should specifically ask what services the CCG commissions (rather than 'provides')? Everything has got so woolly with the use of council...
I think it would be wise to stipulate on any claim form that you are already using energy management techniques to the best of your ability...
[IMG]
I've started looking at some of the booklets/advice pages from different ME/CFS services on energy management/pacing, and the one thing they all...
The probably used 'exercise' as their search term (graded exercise therapy)...
Imagine if they only monitored and reviewed Parkinsons and MS patients for 6-12 months maximum from the initial GP referral for the investigation...
They (Newcastle Foundation Trust) state this: So no need for the Yellow Card system for patients to report harm, even for pharmacological...
I found the Newcastle comment regarding no harm from GET: Edit: They also state that they do not use 'PACE' style GET (in another of their...
Actually, it is the Newcastle Foundation Trust providing the comments, not a particular service. They seem to have given the submission on behalf...
From memory, I think the Newcastle service [Edit: it was the NHS Newcastle Foundation Trust, not a specific clinic] said they had never seen a...
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