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

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.


Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017 - Meeting Documents

The meeting documents have now been published on the Norfolk County Council website.

This is a very long document and also contains issues that the Joint Committee are considering other than the ME & CFS Service.

A list is below of the individual documents relating to the ME & CFS Service.

01Public Participation Session - At the January 2017 Joint HOSC meeting, with the permission of the Chairman, Barbara Robinson, a member of the Patient / Carer Group spoke about the ME & CFS Service.

02. Update on the ME & CFS Service by Gt Yarmouth & Waveney CCG at the January 2017 Joint HOSC meeting

03. Suggested Approach from the Joint HOSC regarding the ME & CFS Service - March 2017

04. Timeline of submissions to the Joint HOSC regarding the ME & CFS Service between 2008 and 2017

05. Briefing from Gt Yarmouth & Waveney CCG - March 2017

06. Feasibility Assessment of Implementation of a Consultant Led ME & CFS Service in Norfolk & Suffolk - November 2016

08. Patient Change Audit - January 2016

09. Children's Survey - December 2013

10. Briefing from ECCH - Provider of the ME & CFS Service - March 2017

11. Complaints about the ME & CFS Service 2014 -2017

12. ECCH Patient Survey January 2014

13. Report of Patient Experience from the Patient / Carer Group - March 2017

14. All the Meeting Papers for the 4 April 2017 Joint HOSC

A representative from the Patient / Carer Group will be attending the meeting.  A presentation will be given at the discretion of the Chair of the Joint Committee.

Suffolk Commissioning are leading the service development process and will also be attending the meeting.

Update: Minutes of the meeting can be found here

The NHS asking for interest from Providers to deliver a Consultant led service in Norfolk and Suffolk

Yesterday, Suffolk Commissioning issued a 'Prior Information Notice' on behalf of the 7 CCG's who commission (or buy) the ME and CFS Service from Provider(s).

The CCGs are interested in transforming this into a consultant led model consistent with the current international consensus evidence base for ME and CFS.
The aim of the service will be to improve outcomes (particularly for those with severe ME), increase ongoing support and provide a more holistic multi-disciplinary team approach to care. The total annual budget for the community element is anticipated to be in the region of 500,000 GBP.
This Prior Information Notice does not guarantee anything, but rather it is 'dipping a toe in the water' to see if there are any Providers willing to deliver the service for the funding available.  

The Prior Information Notice will run for a month.

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017

The role of the Joint HOSC is to hold local services to account.  A briefing for the Joint HOSC was provided by the NHS for the meeting in January 2017. 

The Joint HOSC have reviewed representations made by the NHS in response to the complaints that have been made by the Patient / Carer Group.  

We have repeatedly complained about the serious shortcomings in care and the failure to deliver on promises for improvement accepted by the NHS and made on the recommendation of the Joint HOSC in 2009.

Meeting of NHS Commissioners on 13th March 2017

Commissioners from all of the 7 CCG's who commission the Norfolk and Suffolk ME and CFS Service are meeting on 13th March.  They will be discussing the way forward following last years feasibility study for service change.  This is a very important meeting for our local service.

This post will be updated when we know the outcome of the meeting. 

Commissioners have assured us that they remain committed to delivering a biomedical consultant led service in Norfolk and Suffolk.  Options are being explored to achieve this within the finances available. 

Another local MP Interested in our Service Development

The MP for Gt Yarmouth, Brandon Lewis has recently agreed to contact the Gt Yarmouth & Waveney CCG (also known as Health East) to raise our concerns regarding Service Development.

Local MP Jo Churchill contacts MP's in Gt Yarmouth & Waveney regarding Service Development

The 7 CCG's which commission the Norfolk and Suffolk ME and CFS Service will be meeting shortly.  They will be discussing the way forward in response to the feasibility study for service change which was undertaken in the autumn of 2016.  This study concluded that cost neutral service development can be delivered which addresses long standing inequalities of care, especially for those severely affected by ME and CFS.  The post, 'Hanging in the Balance' explains in more detail.

In the meantime members of our group have been contacting our local MP's to ask for their support for this unprecedented opportunity to deliver the care that patients have repeatedly told us they want.

Most recently, the MP for Bury St Edmunds, Jo Churchill has kindly agreed to contact Brandon Lewis MP (Gt Yarmouth) and Peter Aldous MP (Waveney) on our behalf.  Both Brandon Lewis MP and Peter Aldous MP have also recently been alerted by constituents of our group to the risks of further delay in delivering on promises made by the NHS to local patients in 2010. It is the hope of our group that the combined interest by local MP's can make a difference.

The service development process is at a critical and time sensitive stage after many years of work both by Commissioners and our group.  If you live in Norfolk or Suffolk, and are well enough, a letter or email to your MP in support of service development would be very welcome.


Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 20 January 2017

You may recall that the service development process began in January 2010 following recommendations of the Joint HOSC, which the NHS accepted. 

Documentation from the Joint HOSC from 2009 can be found here
And from the NHS in 2009 and 2010 here and here.  Norfolk LINk made a submission to the CQC which also informed the process, the document can be found here 

Regular updates have been provided to the Joint HOSC by the NHS since 2010.  The most recent NHS briefing for the Joint HOSC can be found here.

At this meeting there were presentations from the Patient / Carer Group and Gt Yarmouth & Waveney CCG.  Audio recordings were taken at the time and I will upload the transcripts shortly.