Care Opinion

ME/CFS Service

Posted By Flos

"ME/CFS Service"

About: East Coast Community Healthcare C.I.C NHS West Suffolk CCG

(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

. 

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Responses

Response from Wendy Moore, Patient Liaison Officer, East Coast Community Healthcare 7 years ago
Wendy Moore
Patient Liaison Officer,
East Coast Community Healthcare

Submitted on 07/12/2017 at 13:53
Published on Care Opinion at 15:57

Thank you for your feedback which we take very seriously.

ECCH is commissioned by West Suffolk CCG to provide a diagnosis and short term therapy service. Our therapists can make recommendations to a patient’s GP but the GP is responsible for prescribing medication.

We assure you ECCH is not ceasing to write letters in support of benefit claims. We follow guidance from the Department of Work and Pensions (DWP) which states that we should not be providing information direct to patients to support claims but that the assessing body working on behalf of the DWP will request anything needed directly from us. If you would like more information regarding our policy on the writing of supporting statements, please contact our Patient Liaison team on 01502 445447.

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Update posted by Flos (a service user)

Hello Wendy

Thank you for your reply which, unfortunately. I find totally inadequate as it fails to address the core problems, which are the long standing lack of a consultant lead and the inadequate service currently provided.

The Norfolk and Suffolk Patient/Carer group keep us well informed and I am aware of the long history behind the failure to provide a consultant led service. As patients, we suffer from the neglect every day of our lives, many of us in a severe condition, unable to participate in life and suffering greatly. I would be grateful if you could throw some light onto the subject for me, as to why the CCGs and ECCH have failed to keep to the agreed proposed strategy as outlined in the JHOSC in 2009 and in the ME CFS Service Specification document, to implement a consultant led service as soon as possible.

I have been seen by a cardiologist who can't understand why I am not being "looked after" by a neurologist and why I haven't been offered a mitochondrial test or a muscle biopsy, whilst the neurologist that I saw offered no help and discharged me, indicating that my needs should be taken care of by the specialist ME Service.

If ECCH persist in refusing to provide letters direct to the claimant please can you point me towards the directive from the DWP that states that evidence should not be sent directly to the patient. Such an important directive must surely be in the public domain and published in their guidelines?

Your justification for this change in service provision is that "we follow guidance from the DWP which states that we should not be providing information direct to patients to support claims but that the assessing body working on behalf of the DWP will request anything needed directly from us". This information is not consistent with what patients are being told by the DWP. They are being told that the DWP are too busy to ask for evidence and that it is up to the claimant to provide the evidence. Furthermore, the Service Specification document states that Service Users would be consulted on “any future changes to the Service Specification”. Service Users have not been consulted and presumably are only finding out when they ask for such a letter and are refused.

I look forward to hearing from you

Regards

Flos

Response from Wendy Moore, Patient Liaison Officer, East Coast Community Healthcare 6 years ago
Wendy Moore
Patient Liaison Officer,
East Coast Community Healthcare

Submitted on 17/01/2018 at 11:08
Published on Care Opinion at 12:09

Thank you for your further questions regarding the ME/CFS service provided by East Coast Community Healthcare CIC.

At the current time ECCH is not commissioned to provide a consultant-led service and whilst we have had a number of discussions with our commissioners, this has not progressed further at the present time.

With regards to ECCH’s approach to supporting DWP claims, this is based upon guidance supplied to us directly by the DWP. The document in question is the “PIP Assessment Guide” published in September 2016. Although this is guidance for organisations carrying out assessments on behalf of the DWP it does provide information relevant to ECCH and other providers of healthcare.

The following quotes show clearly the expectations of the claimant, assessor and healthcare organisation providing care to the individual in terms of supporting DWP claims.

"At this stage, claimants are encouraged to provide any supporting evidence they already have that they feel should be considered alongside their claim information – for example, evidence from a health or other professional involved in their care or treatment. See paragraph 2.3.11 for further examples of supporting evidence.”

“They [claimants] will only be encouraged to provide evidence that they already have and not to delay their claim to seek evidence or ask for evidence for which they might be charged – such as a letter from their GP.”

“Providers should seek additional evidence from professionals involved in supporting claimants, where HPs feel that would help inform their advice.” page.13 – 2.1.8

The above wording taken directly from the guidance explains that the claimant should be providing information they already have and that they should not be asking for additional information from their healthcare provider at the time of application. It also states that the onus for collecting further relevant information sits with the assessing body. Please be assured that ECCH will always support DWP claims when requested to provide evidence by the assessing body and that these reports will be provided free of charge.

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