Norfolk and Suffolk patients complain about the ME & CFS Service

Patients from both Norfolk and Suffolk have made formal complaints to their local Clinical Commissioning Groups (CCG's) who purchase care for people with ME and CFS. 

The response from Suffolk Commissioning regarding a complaint made earlier in the year can be found here

The complaints have centered around the failure to develop the ME and CFS service. The current community service is provided by East Coast Community Health (ECCH). The same issues are raised by patients in feedback to ECCH every year but no improvements have been made. In fact the level of service has been reduced and outcomes are worsening. Far fewer home visits are made now, which especially impacts on severely affected patients. In addition last summer the highly valued support for benefit claims was withdrawn without any consultation.  Children's services remain fragmented.

In 2016 six of the seven CCG's in Norfolk & Suffolk (Great Yarmouth and Waveney CCG refused to contribute) funded a feasibility assessment for the implementation of a consultant led service. The study concluded that a consultant led service could be set up, on a cost neutral basis, which would go some way to addressing the significant inequalities of care.

Unfortunately the seven CCG's could not agree on a way forward. However the two Suffolk CCG's have commissioned specialist care from Dr Nacul on a limited basis for moderately and severely affected patients. Dr Nacul heads the CureME Team at the London School of Hygiene and Tropical Medicine which is the home of the ME Biobank. 

A copy of the July 2018 statement from the Suffolk CCG's can be seen here

It is worth remembering that the Service Development process was set up by the NHS in 2009 as a partnership between Patients / Carers and Commissioners to improve the local service and address unmet need. The NHS recognized that the current service is inadequate.

A full public health Needs Assessment was carried out by the NHS Norfolk which identified that the local service has contact with fewer than a quarter of patients likely in need of support and that there is no coherent commissioned service for children. A Service Specification was also agreed between Commissioners and Patients / Carers. 

After the CCG's were created in 2013 a detailed Action Plan was drawn up to implement service change. Unfortunately the Provider, ECCH, has been resistant to change and not all of the CCG's have been supportive of the process.  At the current stage in the Service Development process inequalities of care have increased, rather than been addressed.

It is surprising therefore that despite this lengthy and complex process Commissioners from Norfolk and Waveney have not issued any statement to their ME and CFS patients to explain why the opportunity to significantly improve the service was not taken forward. 

Norfolk patients have made formal complaints as they are understandably very concerned by the inequality of care between Norfolk and Suffolk, the lack of action by their CCG's, and the lack of transparency around decision making.  The issue was covered in the Eastern Daily Press on 27 July 2018.

The Norfolk and Waveney CCGs have formed a Joint Strategic Commissioning Committee (JSCC). The JSCC meets every two months in public and will be meeting on the 21st of August. A discussion paper regarding the ME and CFS service will presented. All the papers for the meeting on the 21st of August will be available on the Norfolk CCG websites from the 14th of August.

Norfolk patients have been told that a full response to their complaints will not be issued until after the JSCC meeting on 21st August. It is unclear why the Norfolk CCG's are not responding to complaints about decisions made last year, until after 21st August this year.

Norfolk patients have not been asked for their views regarding the decisions made by their CCG's.  The Patient /Carer Group will submit a paper to the JSCC for their consideration and we hope that the views of patients are included in the discussions.

10 August 2018

Response to the NICE draft scoping document on behalf of LocalME

NICE are currently reviewing the guidelines for ME and CFS.  LocalME have prepared a response to NICE's draft scoping document which you can find here

The response was collated and written by Barbara Robinson, sincere thanks to her for all her hard work on this document in a short time frame.

It is a long document, but is worth reading, especially the general comments at the end which deliver perspective on service change from the experience of the work that has been going on in Norfolk and Suffolk for many years especially:

  • NICE should not make things worse than they already are
  • The needs children and young people are of considerable concern with 'pop up clinics' with no specialist oversight, parents accused of FII and the failure of health and social services to deliver appropriate, co-ordinated care
  • The needs of the severely affected have also been neglected
  • The lack of accountability for services for people with ME & CFS
  • The importance of the patient experience 
  • How in Norfolk and Suffolk the aims of partnership working have hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability
If you would like to read further on the topic information from the ME Association can be found here

The next stage is the appointment of members to the guideline committee.  The committee will meet in November.  The aim is for new draft ME and CFS guidelines to be published in April 2020.


7 August 2018

Dr Luis Nacul, internationally respected ME clinician and researcher, to provide specialist care in Suffolk

Suffolk Commissioning have released a statement today confirming that Dr Luis Nacul will be providing specialist care for patients in Suffolk with moderate and severe ME and CFS.  This will be on a limited basis from July 2018. Currently care will not be provided for children and young people and home visits will be considered on a case by case basis.  Referral will be via your GP.

You may recall that Dr Nacul leads the CureME Team at the London School of Hygiene and Tropical Medicine. The team is driving research for the recognition, diagnosis and treatment of ME and CFS.  Dr Nacul and his team are experienced, compassionate and committed to research into ME and CFS. The CureME team runs the MECFS Biobank which has included the collection of samples and clinical data from patients, including the severely affected, across Suffolk and Norfolk.  We are incredibly lucky that the services of Dr Nacul have been secured, even though it is on a limited basis.

In 2016 Dr Nacul, at the request of six of the seven CCG's who commission the Norfolk and Suffolk ME and CFS Service, carried out a feasibility assessment for the implementation of a biomedical consultant led service in our area.  

Unfortunately the CCG's in Norfolk, Suffolk and Gt Yarmouth and Waveney were unable to agree a joint way forward.  This appeared to be due in part at least to the differences between the CCG's regarding the way services for people with ME and CFS are prioritised.  

In addition, East Coast Community Health (ECCH), who deliver the current service have been, throughout the service development process, reluctant to embrace change to improve outcomes for patients. Annual patient surveys by ECCH have demonstrated year on year worsening outcomes following contact by patients with the service.  ECCH identified additional costs after the feasibility study was carried out which meant that the proposals for the new service could no longer be delivered on a cost neutral basis.

Suffolk Commissioning have been leading the Service Development process since 2014 and have remained committed throughout to delivering much needed improvements in care for people with ME and CFS.  The Patient / Carer Group would like to express our sincere thanks for all their hard work in what has been a very difficult climate financially and organisationally.

Patients and Carers will continue to monitor the service delivered by ECCH and by Dr Nacul. It is over 10 years since the service development process began and it has been clearly established what patients want from their local service.  Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk will continue to be addressed by Patients and Carers.  

This website will continue to be updated with news of changes as they occur.  We hope that the service provided by Dr Nacul will be expanded as demand grows.

9 July 2018

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.

19 February 2018

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.

6 February 2018

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.

Response

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.