Meeting with NHS Commissioners 3 December 2015


A meeting with NHS Commissioners and the Provider (ECCH) took place on 3 December 2015.

The minutes for the meeting will be posted when agreed.

We discussed the provision of a new clinical lead for the service, the 2015 Patient Survey undertaken by the service and the culture change needed to put patients and carers at the centre of service development and service delivery.

The next meeting is planned for 3 March 2016.

Please contact us if you would like our group to take any of your concerns or comments regarding the Norfolk & Suffolk ME & CFS Service to the meeting on your behalf. 

ME Association reporting on the advert for a new Consultant / Specialist to lead our service

The MEA say:
If they are able to pull it off, a remarkable collaboration between patients and the NHS will produce what is being hailed as a transformational new service for people with ME/CFS on the borders of Norfolk and Suffolk.

Read more here

Also being discussed on the MEA Facebook page and Twitter.

NHS Job Advert for Consultant / Specialist to lead our service

Today the NHS has published a job advert for a biomedical Consultant / Specialist to lead the Norfolk and Suffolk ME and CFS Service. 

The Patient / Carer Group had input into the wording for this advert.  This is a link to the Job Advert

Applications are invited for a Consultant/Specialist to Lead the Norfolk and Suffolk ME and CFS Specialist Service. We are looking for expressions of interest for the position of supporting Consultant/Specialist to the ME and CFS Service.

Any Consultant/Specialist expressing an interest must have a proven level of expertise and past clinical experience dealing with ME and CFS. This must include experience of dealing with the most severely affected.
Consultant disciplines which will be considered can be wide ranging; e.g. from Haematology, Rheumatology, Neurology, Immunology, Allergy, Endocrinology.

East Coast Community Healthcare CIC (ECCH) is an expanding social enterprise and employer in the East Anglian region, set up in 2010 under the GT Yarmouth & Waveney Divestment programme for Community Services.

We provide a range of NHS in-patient, community and social care services across part of the East Anglian region of the Norfolk and Suffolk, an area covered currently by 7 Clinical Commissioning Groups (CCG’s ).

We offer an excellent range of opportunities for career support and development and a good range of employee benefits, including the NHS Pension Scheme.
We are an organisation that values and invests in its staff and their development. We will provide scope for innovation, further service development and enhancement under the steer of a designated consultant responsible for the ME and CFS Service as we work through to a newly agreed Service Specification under the “Transformation” programme under the lead of Suffolk Commissioning Services.

We are currently embarking on a major “Transformation” programme for the ME and CFS Service in collaboration with both Norfolk and Suffolk commissioners and our regional Patient Group that aims to change the delivery of our existing multi-disciplinary ME and CFS Service. The transformation programme is delivering change from a 'therapy led' service to a multi-disciplinary consultant led service which takes a biomedical approach. This transformation is based on the recommendations of a comprehensive Needs Assessment carried out by NHS Norfolk in 2011.

The Consultant led Service will provide diagnosis support, ongoing care and domiciliary support to both children and adults, including the severely affected 25% of patients, across the whole of Norfolk and Suffolk. This is in line with demonstrated needs identified in a comprehensive Needs Assessment published in March 2012 by the Norfolk Public Health Consultant. 

The service will offer advice on a wide range of symptom control models, access to aids, equipment and other modes of support provided both in-house and via outward referral to specialist services. 

The expansion of our service provision aims to increase the level of specialist support, steer and management available for our patients and staff.

In addition to the above we, intend to expand our involvement within research and this post will be pivotal to that development. Clinicians with a proven track record in patient supported ME research are vital to the new service.

The Consultant Role and expertise.
  • Understand the national and local priorities and policies relevant to the ME and CFS Service. NICE guidance having been considered would adopt a local needs perspective and approach which may accord may accord with locally acceptable aspects of the NICE Guidance.
  • Work with CCG’s to deliver the service in line with the recent agreed Needs Assessment, and the agreed local strategic vision.
  • Oversee the assessment and development of the ME and CFS care pathway.
  • Make recommendations regarding the management of individual cases to the referring medical practitioners, particularly for those patients who are complex and /or severely affected.
  • Work as part of a multidisciplinary team to provide clinical leadership and supervision to the clinical team.
  • Take a service lead in relation to biomedical research by developing the appropriate links with external bodies / academia etc.
  • Participate in the teaching and accredited training of other healthcare professionals, including local GPS
  • Provide advice for related professionals such as Social Workers and educationalists working with patients with ME and CFS in the local CCG network.
We welcome informal enquiries about our ME/CFS service and the organisation. Please feel free to contact Nick Wright on 01502 718600 if you would like to discuss the above requirements. To make a formal expression of interest please press the Apply Now button below to complete our application form.

Patient Survey carried out by the NHS - April 2015

The Provider of the Norfolk and Suffolk ME and CFS Service contact patients to ask for their views regarding their experience of the service.

The most recent survey took place earlier this year and a report was written in April 2015.

You can download a copy of the report from here.

The report is well worth a read, especially the comments of the respondents which are included at the end of the report.  These comments have been analysed and will be taken into account as we transition from the old specification to the new biomedical service specification. 

The time and effort that patients take to fill in the form and add, sometimes very detailed comments, are much appreciated by both the NHS and our Patient and Carer Group.

Meeting with NHS Commissioners 3 September 2015

A meeting with Commissioners took place on 3 September 2015.

The minutes for the meeting can be downloaded from here.

We are continuing to discuss delivery of the recommendations of NHS Norfolk's comprehensive Needs Assessment, finalised in 2012 and which identified the appropriate level of service provision for people with ME and CFS, and their carers in our area.

The next meeting is scheduled for 3 December 2015.  Please Contact Us if there is anything that you would like raised at the meeting.

Eastern Daily Press - Tributes paid to ‘compassionate’ doctor who paved the way for cancer centre at Norfolk hospital

A “compassionate and caring” doctor who was a leading light in the development of a specialist cancer centre at Gorleston’s James Paget Hospital has died aged 74.

Dr Terry Mitchell will be remembered as one of the pioneers of the Sandra Chapman Centre and the Norfolk and Suffolk ME/CFS (chronic fatigue syndrome) service.

He died on July 3, three years after a diagnosis of mesothelioma.

In 1982 he was the first haematology consultant to join the staff of the newly built James Paget hospital having moved to the Lowestoft area from Charing Cross Hospital in London with his wife Dr Anne Mitchell, also a consultant in microbiology, and their two daughters.

Over a 20-year career at the James Paget, Dr Mitchell initiated the fundraising and building project, which resulted in the provision of the Sandra Chapman Centre. 

The idea for a dedicated treatment centre for patients suffering from haematological illnesses and cancer first came from Dr Mitchell’s discussions with one of his patients, Sandra Chapman (former Deaconess of Hopton and Corton churches). 

Sandra was an inspiration to Dr Mitchell and his commitment and dedication lead to and a two year fundraising campaign. 

The result was the Sandra Chapman Centre which has provided care to local patients ever since.

As well as looking after patients in his role as a consultant haematologist, Dr Mitchell established the first consultant led service for patients with ME/CFS in Norfolk and Suffolk and was a national champion for the region for many years.
Dr Mitchell was supported in this by the efforts and campaigning of patients and families affected by ME/CFS, and long after his official retirement as a haematologist, he still carried on working with this group of patients.

He was also passionate about the training and support provided to medical students and young doctors. He was appointed as Associate Dean to the Cambridge University clinical school, a role which allowed him to directly help doctors with their training

Many patients and staff who knew him well have made tributes to Dr Mitchell.
Before and after retirement Dr Mitchell enjoyed pastimes including gardening, entomology, and as an experienced ornithologist, along with Anne, they enjoyed extensive travel across the world and in his home county, watching and studying birds.

Dr Anne Mitchell thanked all friends, staff, patients and Steve Haughton (civil celebrant) for attending Terry’s celebration of life and their overwhelming tributes, support and donations made in Terry’s memory.

Former patients, relatives, nurses, doctors and friends joined the family on Friday July 24 at the Parkhill Hotel to remember and celebrate his life.

Dr Charles Shepherd, medical adviser to the UK ME Association, said: “The words kind, compassionate and caring all immediately come to mind when I think of Dr Terry Mitchell. He will be greatly missed by his patients with ME/CFS – and he must have seen a huge number during his professional career.
“And we should never forget that Terry was one of a very small number of clinicians with NHS consultant status who wasn’t afraid of supporting his patients when he knew something was clearly wrong – his strong criticism of the NICE guideline and supporting the High Court judicial review of the guideline being just one example.”

Death of Dr Mitchell and an opportunity to celebrate his life and work

The Mitchell family wish to let former colleagues and former patients know the following;

Dr Terry Mitchell, a leading ME/CFS specialist in the UK, died at home on Friday 3 July 2015 after a long battle with debilitating illness.

Dr Mitchell was the Consultant clinical lead of the Norfolk, Suffolk and Cambridgeshire NHS ME/CFS Service until 2008 and thereafter ran the Peterborough ME/CFS Service until his retirement in 2011.

Under sometimes difficult circumstances, he cared for thousands of patients throughout his career with great compassion and humanity. He also quietly acted as an advocate for ME sufferers in local, national and international fora.

Dr Mitchell personally endorsed and ensured distribution of the Carruthers et al Criteria (2003) and Overview (2005) documents to all referring clinicians in his NHS practice areas. He subsequently went on to co-author the International Consensus Criteria (2011) and Clinical Primer (2012) along with Dr Bruce Carruthers and colleagues.

He was a critic of the UK’s National Institute for Health and Clinical Excellence (NICE) clinical guideline 53 for ‘CFS/ME’ patients.

Dr Mitchell will be greatly missed by many former patients, colleagues and friends as well as by family. He was a true humanitarian.

The Mitchell family wish to have a private funeral for immediate family and friends.

Details of an opportunity to celebrate Terry’s life and work, together with an RSVP can be found here Please reply as soon as possible.

The intention is to hold this thanksgiving in Suffolk on Friday, July 24. Friends, colleagues and past patients will all be welcome. 

Meeting with NHS Commissioners 4 June 2015

A meeting with Commissioners took place on 4 June 2015.

The minutes for the meeting can be found here.

Meeting with NHS Commissioners 24 February 2015

Minutes for the meeting have now been agreed.  You can download them here.

During the meeting we discussed the transition from the old service specification to the new specification.  The new service specification has been agreed with service users and is based on the NHS Norfolk Needs Assessment (link on the Homepage) also agreed with service users,

As part of the process the NHS are to place an advertisement for a consultant to lead the new service.

Minutes of this meeting will be posted as soon as they are available.

The new specification is committed to the reinstatement of an acceptable patient endorsed Consultant led service as recommended repeatedly by Norfolk and Suffolk Joint Scrutiny since 2009.

Failure to do so could lead to patient harm and a failure of duty of care.  If an appropriate service is not implemented service users will consider raising complaints with Clinical Commissioning Groups locally via Healthwatch and/or complaints to the Care Quality Commission under their new enhanced powers as of April 2015 which hold local authority (and Local Authority Public Health Services) to account.

Please contact us if you have any queries.