Blistering review of ME & CFS Service posted on Care Opinion

Care Opinion encourage people to ''share your experiences of UK health and care services, good or bad.  We pass on your stories to the right people to make a difference.''

Yesterday a detailed review from a local patient was posted.  This patient highlighted many of the issues that have been repeatedly raised by the Patient / Carer Group to both Commissioners and the Provider, East Coast Community Health.

The link to the review on the Care Opinion website can be found here.


There has been considerable local response on Facebook and also on Twitter.
The Care Opinion website indicates that the Provider East Coast Community Health, has read the review.

The text of the review is as follows:

(as a service user), 
I have been ill with ME for sixteen years and getting increasingly worse to the point that I am mostly house bound, or bed and sofa bound to be more accurate. After 12 years of being dismissed as depressed I was finally introduced to the ECCH ME Service. I felt a little more hopeful. They were the first ones to give me a firm diagnosis. Not too much to ask is it? I had self diagnosed it years ago but getting anyone to believe me was a struggle.
Having now been " properly" diagnosed I had expectations that things might improve and that the ME Service might start giving me some sort of hope, support or treatment. Most of us with ME are forced into the situation where we have to become our own experts, so I was fully aware that currently there is no cure or even diagnostic marker. So it was not like I expected miracles, but I did expect more than I got. So what did I expect after dragging myself on a forty mile roundtrip? I expected to have access to a specialist consultant like other people with neurological conditions. I expected to be able to have access to things that some people in the ME community have found helpful such as B12 injections or melatonin to help with the severe sleep disruption and unrefreshing sleep. I expected there to be health care professionals who were at least as well informed as I was on the latest research on possible causes and possible treatments, so that a little hope might be injected into the disaster that is now my life.
Instead I was made to feel like I was being unrealistic and argumentative. At the very least I expected to be meeting in premises that were suitable for the patient, not being asked to walk down lengthy corridors and be offered more leaflets on pacing, which I am too tired and angry to read. My life has been destroyed and this is all that I am being offered. Then I found out that the service being offered was only a short term one of six appointments. This left me feeling very bemused. Six appointments offering advice on pacing. That was it. End of the line.
I did get quite excited one time when I got to see the GPWSI (gp with special interest), because I thought I was going to be able to ask for a trial of B12 injections. No, wrong again! Silly old me! This is not a prescribing service, this is just a diagnosing service I was told. When I recovered from that piece of news I went on to ask this GPWSI if they knew of any trials with which I could get involved. The only one that they could suggest was one involving the donation of my brain after my death. Not quite what I was looking for to give me hope and something to cling on to in my desperation.
The Occupational Therapists were all very pleasant and supportive but were obviously unable to offer the kind of service and help that I was expecting. I found that they almost acted as a go-between, between the patient and their GPs. Often the GPS know nothing about ME or don't believe in its existence as a physical illness, therefore they fail to treat with anything other than anti depressants. The OTs were in a position to recommend other drug therapy that may be beneficial for symptomatic relief of some of the symptoms but isn't it outrageous that so many GPs are so ignorant or disbelieving of the condition.
The most useful and valuable thing that the Service have done for me was to provide letters describing my condition in support of benefit claims and they have recently said that they are going to cease providing this service.
Anyway I am getting too exhausted to write much more. To summarize my thoughts...I feel that there is a chasm between the level of service on offer from the ECCHME Service and the level required. I think it is not being made clear enough from the outset what the level of provision is for the patient. i.e. that is is a short term, diagnosing and non prescribing service. I feel that they have little to offer the long term or severe sufferer except for the support provided for benefits.
I feel despair at all the political shenanigans going on behind the scenes of the 7 CCGs in our area (except for suffolk ccg I believe) who band together to deny us real help and fail to listen to their patients voices or take into account the serious nature of this life destroying illness and provide us with a consultant led service after ten years of fighting for one, to give us some hope and parity with other serious conditions.
I feel that the service actually damages our chances of getting help possibly from consultants in other disciplines such as neurology, or infectious diseases because they say that we are already being taken care of and "looked after" by our own ME Specialist Service. Not funny! Let us hope and pray that over the next few years bio-medical research will pinpoint a treatment that really does improve our health and that the Nice guidelines are updated appropriately and swiftly. We have wasted enough of our lives

10 November 2017