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 In addition last summer the highly valued support for benefit claims was withdrawn without any consultation.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