Patients/Carers met with NHS Suffolk Commissioning and a clinician who has expressed an interest in leading the Norfolk & Suffolk ME & CFS Service. The Service is currently commissioned by Norfolk, Suffolk & Gt Yarmouth & Waveney CCG's and delivered by East Coast Community Health (ECCH).
A feasibility study will be carried out over the summer to explore what can be achieved in the light of the new service specification and within the finances available. This feasibility study has been funded by Suffolk and Norfolk CCG's. The Patient/Carer Group very much appreciates that funding has been made available for this review to facilitate the move forward with service development.
A meeting has been arranged for 20 September 2016 to discuss the outcome of the review.
A meeting with NHS Commissioners (from Suffolk, Norfolk & Gt Yarmouth & Waveney) and the Provider (East Coast Community Health) is planned for 14 April 2016. Update is below. We will be discussing:
Minutes from the previous meeting
The Action Log
Service Development and Review
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. (The meeting that was planned for the 3 March 2016 was postponed with the agreement of the Patient / Carer Group due to the ongoing work to recruit a Consultant to lead the service) Minutes for the meeting will be uploaded when agreed.
Representatives from the Patient / Carer Group and NHS Suffolk Commissioning attended this meeting. However, representatives from the Provider, andGt Yarmouth & Waveney CCG did not attend. The representative from the Norfolk CCG's was unfortunately unable to attend due to personal reasons. As a result this was not a formally processed meeting. However, the meeting lasted the usual length and the Patient / Carer group was given the opportunity to raise issues of concern. Work is ongoing to secure a consultant to lead the service in Norfolk and Suffolk.
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.
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.
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,
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
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
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
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
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.
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.