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