Formal Complaint about ME and CFS Service made to Suffolk Commissioners

A Service User has kindly shared their formal complaint which was raised with West Suffolk Clinical Commissioning Group last week.  The issues raised are:
  1. The failure to implement a consultant led service
  2. The withdrawal of support for benefit claims by the provider of the service, East Coast Community Healthcare
This is a detailed letter of complaint which must have taken a great deal of time and effort.  It is very important that Commissioners receive feedback regarding the services that they pay for on our behalf.  

Suffolk Commissioning have included the development of the ME and CFS Service in their 5 Year Plan.  In addition West Suffolk CCG has a community engagement programme which is described on their website as follows:
Members of the community engagement group play a vital role in working with WSCCG to ensure patient and public views are listened to and that local people have a real say in shaping healthcare services in west Suffolk.

A copy of the letter of complaint can be found here.

We will let you know when a response is received from Suffolk Commissioning.

Response from Service Users regarding removal of support for benefit claims

The benefits system is especially difficult for people who have invisible illnesses which can fluctuate and are often poorly understood such as ME and CFS. Last year, the Provider of our local service, East Coast Community Health decided to withdraw the provision of supportive letters for benefits purposes.  These letters described diagnosis, management, symptoms and function and were very much valued by patients.  

The DWP state:
"When deciding benefit entitlement, it is essential that the right decision is reached.  Up to date and relevant information is central to this process."

The PIP form itself encourages submission of evidence from Occupational Therapists. As previously posted East Coast Community Health made their decision, which is likely to disproportionately affect severely affected patients, without consultation. 

We have collated comments from patients regarding this decision.  The comments were made via social media, through local support groups and via this website.  The comments have been shared with local Commissioners and East Coast Community Health.  A link to the comments can be found here

Unfortunately, to date, despite the distress of patients, East Coast Community Health appear to be reluctant to reconsider their decision.

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

ME Biobank receives a grant of over $2 million from the NIH in the US

The ME Biobank is led by Dr Luis Nacul and based at the London School of Hygiene and Tropical Medicine. Samples for the Biobank have been collected from patients in London and East Anglia.  The Biobank is especially important as the Biobank Team traveled long distances to collect samples from severely affected patients, a cohort rarely included in research projects.

The project is a longitudinal study that is measuring changes in the immune system and genetic profile of individuals in a disease whose symptoms are known to fluctuate over time. The initial £1 million project, which began in 2013, was over 3 years and had also been made possible by funding from NIH.
The new grant will enable the Biobank to increase in size as even more blood samples and clinical data will be collected from people with ME/CFS, multiple sclerosis, and healthy controls, and then made available to research applicants.
You may recall that last year Dr Nacul and his team prepared a feasability report of Implementation of a Consultant Led ME & CFS Service in Norfolk & Suffolk.  Work continues with Commissioners to develop the local service.

Our Group is delighted that the work of the Biobank searching for ME biomarkers is secured until 2021 as a result of this grant.

ME & CFS Service no longer providing letters in support of benefit claims

As of last week the ME & CFS Service are no longer providing these letters.  The decision has been made by the Provider of the Service (ECCH) without consulting patients even though this support has been provided for many years.  These letters are very much valued by patients.  It appears to be a cost cutting measure which will disproportionately affect the severely affected who are least able to access GP services.

The DWP state ''When deciding benefit entitlement it is essential that the right decision is reached.  Up to date and relevant information is central to this process.''

Our group has already been in touch with Commissioners and the Joint Health Overview and Scrutiny Committee regarding this significant change in service provision.  In the meantime it would be very helpful if we could pass on any comments via the 'Contact Us' tab that you would like to make regarding this change and how it will affect you.  Comments will be kept anonymous.

ME & CFS Service Development Featured on BBC Radio Suffolk and BBC Radio Norfolk

On 15 August 2017 local Radio in both the Suffolk and Norfolk covered the devastating impact of ME & CFS, NICE Guidelines and Service Development.

Barbara Robinson, a Carer Rep on our group, gave interviews which were carried on both the local radio stations.  Barbara included thanks for Suffolk Commissioning who are continuing to work hard to develop the ME & CFS Service.

This is the link to the BBC Radio Norfolk programme which is available for 30 days from broadcast  

And this for BBC Radio Suffolk, again available for 30 days from broadcast.

The issues surrounding ME and CFS were included in the headlines throughout both of the Mark Murphy and Nick Conrad morning programs. 

You can find a transcript of the discussions on the ME Association website (with sincere thanks to Russell Flemming for his hard work on this). The MEA transcript also includes the times the items were broadcast so that you can skip forward to them if you wish.

Meeting with Suffolk Commissioning 13 July 2017

Representatives from the Patient / Carer Group met with Suffolk Commissioning on 13 July.  We were reassured that Suffolk Commissioning remains committed to developing the ME and CFS Service.

A meeting is to be convened between all of the 7 CCG's who commission the ME & CFS Service to decide how they are going to regroup and move forward.

When this meeting has been held a further meeting will be arranged to update the Patient / Carer Group.

The Patient / Carer Group has confirmed the action points from the meeting with Suffolk Commissioning.  These action points evaluation of the current level of equality of care for people with ME & CFS in our region, as recommended by the Joint Health Overview and Scrutiny Committee.