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I am starting this thread to bring together all the links to guidance and advice for claiming the main UK disability benefits of Employment Support Allowance (ESA) and the new Universal Credit (UC). This thread is intended for general links and advice, not specific to any individual's...

Link to a free downloadable guide to getting Social Care in England: https://www.disabilityrightsuk.org/care-act-guide

Aren't they using absolute numbers rather than percentages though? So larger hospitals will seem worse when they may be better than some of the smaller Trusts.

I think you've hit the nail on the head there! My daughter recently said to me, 'All my friends' parents use cannabis for their pain now.' My immediate thought (as someone who has never taken illegal drugs) was, 'But how do they know where to get it?'

Fantastic work @dave30th!

If only we had Dr Who as a member of the forum...

Can we chip in and buy him a clock as a hint that it is time to retire?

Yes, being on this forum has made me much more astute to what is actually happening in the NHS. What seem like highly desirable approaches to most patients, such as the 'integration of services', 'extending community-based services' and 'treating people holistically', are in reality just...

When I was going through my divorce and had to discuss some of my ex's quite extreme behaviours with my solicitor, he warned me to 'not involve a psychiatrist' unless absolutely necessary. He then said they had a well-used joke in the legal profession that you could only tell the psychiatrist...

For some unknown reason I've always pronounced his name 'Weasel-ly'. I can't seem to change my internal voice's way of saying this when I read his name, even though I now know i've been spelling and reading it wrong. It couldn't be because my brain keeps making this connection whenever I think...

Going through the menopause hasn't improved my fatigue, headaches or pain levels, and the muscle stiffening/cramps in my limbs have actually got much worse. However, I do notice the difference in my mood and ability to control my emotions - I used to get terribly tearful for 2 weeks out of my...

It was my homour talking, I did know!

For me the evidence is inscribed in my body!

But it's not about convincing doctors and other health professionals whether ME is 'real' (mental illness is real as often quoted by SW et al), but about the NICE guidelines explaining clearly what having ME (or ME/CFS) means for a patient, that it is not just 6 months or more of 'chronic...

Well, another problem is 'modern' surgeries just assign patients to random GPs as their 'named doctor' on the practice system, despite the patient seeing a completely different one as their chosen, regular doctor. Whenever the hospital consultants have written to 'my doctor', the letters are...

The person named to have the overview and to be responsible for monitoring healthcare could be the patient's GP, especially if there isn't a social worker involved or if there is no specialist ME/CFS service in the area.

I agree. But specifying and describing PEM as well as stating that POTs, orthostatic intolerance, cognitive dysfunction and sensory sensitivities can all be severe in patients, would help get across to GPs that ME patients aren't exaggerating their symptoms. It should also be stated that...

Well, I want specific recommendations such as an electric wheelchair, but I also want a personalised care plan. Care plans are drawn up from a person centred perspective, with the involvement of the patient. Of course I don't want a care plan that has been written without involving me. I am...

But in the absence of any real evidence-based treatments, isn't the most clinically useful thing for what patients say and describe to actually to be believed? For example, my GP will only write things on my medical notes like, 'she says she falls over', 'she says she has tremors' (even when...

Isn't the purpose of this 'evidence collecting' from patients about demonstrating the need for care and support (and how this is currently not being met), rather than informing 'evidenced based treatment'? Surely, what ME patients desperately need in the updated guidelines (for both adults and...