Clinical Network Co-ordinating Centre (CNCC)

Funds allocated earlier in the year (£44,500 per year for two years) have been uplifted to £58,000 per year. This is good news – every little helps. It still remains that this “centre” will not be a bricks and mortar clinic service, more an administrative base.
The key post will be a Clinical Co-ordinator who will map services, give guidance and link the local clinical teams; provide access to specialist assessment and diagnosis; and advise on treatments. The centre will develop training and education resources and support clinical research into CFS/ME. The Clinical Champion for the CNCC will be Dr Gavin Spickett.

It is true to say that progress has been painfully slow. Developing a new service and involving so many disciplines (direct line health professionals, managers, commissioners from both the primary and secondary care sectors) is unbelievably complex. It has been a learning experience getting to grips with the internal politics. There is willingness and determination from the Steering Group members to plough through the treacle and get something moving and this is encouraging. However time is passing, the funds have been in place since July 2004 and now there is a sense of urgency to get moving. There was a hiccup in the planned timetable to recruit a Clinical Coordinator for the CNCC, scheduled for action during the summer it was mistakenly shelved – literally - in the transfer of information from one person to another. Now back on track the advert is out in the public domain, and recruitment will hopefully take place in January 2005. The interview panel will include clinicians, the Primary Care Trust and ME North East.

A two-day event in November bringing together the lead clinicians and Coordinators from around the Country was held by the Department of Health. This was to shape the national service framework for CFS/ME, to establish avenues to network across the CNCC’s and the Local Teams to ensure equity of service, whilst allowing independence of shaping services at a local level with available staff and resources.

Participants included those who were already delivering services in other areas, experts in a range of specialties and therapies, and a number of patients from across the country. This was an excellent opportunity for partnership working. A first draft of a service framework will be developed from the work of this group and this will be further defined early next year.

Local Multi Disciplinary Teams

North of Tyne (Newcastle/Northumberland and North Tyneside)

The latest Implementation Group meeting was held on 29th November 2004. Both myself and Peter Morton are members of this group.
Dr Gavin Spickett and Dr Michael Snow are willing to start seeing patients for consultation and diagnosis. Dr Spickett has prepared a referral pathway for patients and a clear referral criterion for GP’s. Aware of the number of people who may wish to use the services, there is a need for caution to avoid overload. A lead Paediatrician has been identified and we hope to meet with him before Christmas to discuss the needs of Young People with ME. It has been suggested that he would give his time to working with community paediatricians in a training and education capacity to ensure a degree of understanding at a broader level. Therapists in Physiotherapy, Occupational Therapy and Psychology are working together to discuss treatment packages for patients, and are actively seeking recruitment of suitable people. A further meeting just before Christmas will take this one step closer. With a small budget it is proving problematic fitting the services we wish into the budget available. The good news is that we will have a service beginning early in 2005, whilst recognising it will not be fully functioning from the start.

County Durham and Darlington

After the failure to recruit a team leader for this area, and the substantial cost of advertising, (sadly only one person applied and then withdrew before interview), it was necessary to review the situation. The time taken to go through this process has delayed the implementation of services, although the funds have been in place since July 2004. We now need to ensure that we move quickly to avoid losing any underspend. Dr Keith Linsley (lead clinician for the team) has expressed a willingness to commence services to see patients. Dr Cook (a Physician at University Hospital North Durham), has also agreed to give some session time, it is envisaged that referrals will be taken by the end of January 2005. A letter asking for expressions of interest in setting up a therapy team has been sent out to staff in Physiotherapy, Occupational Therapy, Nursing and Psychology to invite them to a seminar led by Dr Linsley and ME North East – a number of people have expressed an interest – this will be held before Christmas in Durham. A therapy team will hopefully be drawn from this meeting.
A letter to a number of GP’s who have helped people with ME has been sent to invite anyone with a special interest in shaping this service to come forward and we await responses (two expressions of interest are being followed up).
Dr Nigel Speight (Consultant Paediatrician) has agreed to lead for Children’s Services as he does already; a follow up multi-disciplinary approach has yet to be considered.

South of Tyne (Sunderland, South Tyneside and Gateshead)

Services in this area are due to come on stream in April 2005. Funds were allocated in the second round (a total of £84,000). Much work has already been done in the preparation and planning of new services (Sunderland has the advantage of already having the services of Professor Daymond who has operated clinics for some time). What we need to ensure is that the funds presently spent by the Acute Hospital Trust remain in place and the new money is recognised as additional funding.
The Sunderland and South Tyneside ME/CFS Support Group are playing a major role in shaping services, and have been proactive in presenting the needs of patients. ME North East have recently joined the Steering Group and we are all now working together to get the best service possible – within the limitations of funds available. We are meeting throughout December to agree a service model

Easington and Cleveland

The bid for services in this area was not successful – We believe that the Primary Care Trusts involved did not show a real commitment in preparing this bid and seeking out interested parties who may have wished to be involved in service delivery. There is no second chance with the Department of Health to revisit this bid. However we will not be complacent. The Cleveland ME Support Group have pressed for meetings with the Commissioners of Primary Care, and ME North East will be going along with them to present a united front to ask – what do you intend to do now?
They may consider looking at funding options within their existing budgets to set up a service within their area, or they may have to consider contracting with neighbouring local multi-disciplinary teams to send patients to Durham/Darlington, or North/South of Tyne. A meeting is scheduled for 10th December to start the dialogue.
In the meantime however Middlesbrough Primary Care Trust have expressed interest in setting up a seminar/workshop for health professionals on CFS/ME. This sounds very positive and again a meeting will be held early in December – we will be working closely with Cleveland ME Group to plan and facilitate this forum.

We will of course give you an up to the minute report in the next newsletter, however we will be updating our website at intervals before the next publication.