An Opportunity to Volunteer for Research

The Quadram Institute on the Norwich Research Park held a public meeting last week to talk about their ongoing research into ME.  

Barbara Robinson kindly attended on behalf of the Patient / Carer Group and has produced a one page summary which can be found here.

Participants for the research are to be recruited from past and present patients of the East Coast Community Healthcare (ECCH) ME & CFS Service.  Recruitment will be coordinated by Jo Wiggins and Louise Halliday who are Occupational Therapists working within the ME & CFS Service.

10 February 2020

Specialist ME - CFS Clinic in Suffolk Suspended

In order to meet the needs of moderately and severely affected patients in Suffolk, a Specialist ME - CFS Service was established last summer, with care provided by Dr Nacul.  Feedback regarding this service has been very positive.

The Patient / Carer Group was contacted last week by Suffolk Commissioners and we are extremely sorry to let you know that due to unplanned and unexpected changes to circumstances, the clinic will be suspended as of April 2019.

The Suffolk Clinical Commissioning Group's have released the following statement to GP's:

‘Due to a change in circumstances Dr Luis Nacul will no longer be available to deliver the ME/CFS specialist service in Suffolk from April 2019.

As a result the service will be unable to process new referrals with immediate effect but Dr Nacul will see patients who have already been referred and will ensure that all patients in the caseload are reviewed between now and the end of March 2019 and discharged with an appropriate management plan.

The CCG and Suffolk GP Federation will review options for the service going forward and will advise further on that at a later date.

We would like to thank Dr Nacul for the support he has provided and wish him well for the future.'
Any queries from Healthcare Professionals can be directed to Ipswich and East Suffolk CCG.

The Patient / Carer Group would like to add our thanks to Dr Nacul for his much valued work in Suffolk. We extend our best wishes for Dr Nacul's future endeavours, especially with the ME Biobank at the London School of Hygiene and Tropical Medicine.

Moving Forward


The Patient / Carer Group has been assured that the NHS in Suffolk is still fully committed to delivery of specialist care for the unmet needs of moderately and severely affected patients. We are continuing to work with Commissioners in Suffolk to seek resolution and reinstatement of a suitable service as soon as is practicable.


The community service provided by East Coast Community Health continues to accept referrals via your GP.  The Patient / Carer Group is in ongoing contact with the CCG's about the longstanding concerns regarding this service, especially as formal complaints to the Norfolk & Waveney CCG's made last summer remain unaddressed.

31 January 2019

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 26 October 2018 - Meeting Documents

The documents for the meeting of the Joint HOSC on 26 October can be found here.  

The Patient / Carer Group is grateful to the Joint HOSC for their continued scrutiny of the ME and CFS Service in Norfolk and Suffolk. 

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

Information Requests

You will see that there is a considerable amount of information regarding the ME and CFS Service which can be found from page 13 onward.

Detailed information has been requested from the Clinical Commissioning Groups who purchase the service and East Coast Community Health (ECCH) who provide the service.  

The Joint HOSC has considered this information and information submitted to previous Joint HOSC meetings.  The Joint HOSC has also considered their previous recommendations regarding the ME and CFS Service.  The Joint HOSC have detailed their suggested approach in the light of the updated information received from the NHS.

Joint HOSC Papers

There are five main sections dividing up the Joint HOSC papers regarding the ME and CFS Service:

  1. Purpose of the meeting and details of the information requested from the CCG's and ECCH: page 13 
  2. Detailed background: page 14 
  3. Suggested approach by the Joint HOSC after the lead CCG and ECCH have presented their reports: page 16 
  4. Action that the Joint HOSC may wish to consider taking: page 17 
  5. Report from the NHS in response to the request for detailed information by the Joint HOSC; Appendix A: page 19 onward

Key Focus Areas

(a) An update on the Clinical Commissioning Groups (CCGs) and East Coast Community Healthcare’s (ECCH) work to improve ME/CFS services in Norfolk and Suffolk.

(b) Examination of the level of information provided to primary care about ME/CFS and the services available in Norfolk and Suffolk and the information made available to the public in various healthcare settings.

(c) Examination of the divergence in the ME/CFS services commissioned by Norfolk and Suffolk CCGs.

The Joint HOSC papers make reference to an Open Letter dated 8 October 2018 from the Patient / Carer Group sent to the Norfolk and Waveney Joint Strategic Commissioning Committee.  This letter is linked to the next post.

25 October 2018

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