Clinical Network Coordinating Centre

The key role of the Coordinating Centre is to give guidance and link the Local Clinical Teams, develop training and education, to develop monitoring and evaluation tools to ensure equality of services, and to support clinical research into CFS/ME.
The latest good news is that the Network Coordinator has now been appointed. Louise Wilson has taken up this part-time post at the beginning of March. Having sat on the interview panel I can confirm that this is an ideal appointment, and it was a unanimous decision. Not only does she have all the qualities required to fulfil the job description, Louise has personal experience of ME. Now recovered, she explained that she was fortunate in that she had a very helpful GP and was able to access good therapeutic support that helped her recovery. Louise will be based in North of Tyne PCT offices and will have administrative and clerical support. In order to get best value from a part-time post, a work plan and timescale will be devised in order to prioritise the main tasks. I will be working closely with Louise and we plan to meet up in the next couple of weeks.

At the latest meeting of the CNCC (28th February 2005) it was agreed that the extra £12,000 recently allocated to the work of the CNCC should be set aside for training. A national programme is already underway, but not all clinical staff will be able to give time to attend. It was felt that bringing the local teams together for training, and sharing practices and experiences would be very valuable.

Dr Gavin Spickett is our CNCC Clinical Champion – one of 12 across England. Regular meetings are planned to build on the National Service Framework and ensure equity, good practice and expert guidance. Professor Terry Daymond – Clinical lead for the South of Tyne will attend these meetings and report back to our CNCC.

Following a two-day event last November in Bristol (see Focus Winter 2004) a draft service framework was produced for consultation with lead clinicians across the country. Also a designated website for the use of staff in both the 12 centres and the 50 local teams is being developed to share information and expertise. Both pieces of work are proving beneficial in shaping and developing services.

Local Multi Disciplinary Team-
North of Tyne (Newcastle/Northumberland and North Tyneside)

Both Dr Spickett and Dr Snow (lead Clinicians for these services) are now taking referrals for diagnosis and assessment. A referral letter has been circulated to all GP’s (a second round of information was sent out before Christmas when it became apparent that not all GP’s had received this). Therapy services will not be in place until probably June 2005. Heads of therapy services are actively recruiting and we hope to have a team identified quite quickly, but there is likely to be a need for some early training. Should the consultant consider a patient requires therapy treatments, they will be referred into these services at the earliest opportunity.

There is some concern regarding patient flow, the services meeting the demand of patient numbers, and a decision was taken that in the early days referrals would be new patients only. This undoubtedly is causing anxiety amongst those people with ME who have suffered for a long time, who will not be able to access these new services. Regular monitoring and audit of uptake will indicate when a review of this decision can be made. Funding for North of Tyne services covers patients from North Tyneside, Newcastle and Northumberland areas. Patients from Gateshead are covered under the South of Tyne arrangements. (Sunderland, South of Tyne and Gateshead).

With regards to services for young people, I had a meeting on 1st March with Dr George Rylance (Consultant Paediatrician, School of Clinical Medical Sciences, Child Health). Dr Rylance has agreed to be the lead Paediatrician for North of Tyne services. He sees his role in a training and education capacity for other Paediatricians in North of Tyne and has already written to all consultants with general guidance for diagnosis and treatment of young people with ME (based on recent guidelines from Royal College of Paediatric and Child Health). Our meeting was very useful, he now knows all about ME North East and we hope to see him at our Young People’s Conference in July.

Local Multi Disciplinary Team-
County Durham and Darlington

A small group met with Pat Noons (Project Director from the Department of Health) at the beginning of this year. A very helpful discussion identified various ways of moving forward with plans to get services up and running. Not least was the proposal to appoint a project manager to give dedicated time to ironing out some of the glitches.

We now have a person in post and actively getting things moving. Adverts have gone out for the therapy posts, with choices for candidates to consider full-time, part-time or job share to attract as many people as possible. There has been lots of interest from nursing staff and occupational therapists, some have contacted us for information, and more have spoken with Dr Keith Linsley. Interviews will take place early in April 2005.

Clinic accommodation is proving a real problem; all options are now being investigated to find suitable venues. A care pathway is being developed, but for the present time, Dr Linsley and Dr Cook will be seeing referrals for diagnosis and assessment.

Dr Linsley and Adrian Metcalf (PCT Commissioner – lead of LMDT Steering Group) have agreed to hold a stakeholders meeting and invite people with ME, interested health professionals and others, to discuss the shape of services.
This will be held on Tuesday 19th April 2005 at Bullion Hall in the afternoon. Members from this area will be receiving notice of this meeting in the post shortly.

Local Multi Disciplinary Team-
South of Tyne (Sunderland, South Tyneside and Gateshead)

Funding for services are available from 1st April 2005. Despite a good start to the planning and development, not a lot of progress has been made over the last three months. Although there is agreement that the introduction of local multi-disciplinary services are welcome and the additional funding is appreciated, there are some issues concerning the care pathway being put forward by the lead clinicians and the Primary Care Trusts.

The main point concerns the initial diagnosis. The lead Clinician needs to be someone with a medical background and fully trained in the needs of CFS/ME. On a positive note therapist posts have been generally agreed and job descriptions and adverts are being finalised. It is anticipated that posts will be filled by June 2005.

I am fully supportive of the Sunderland & South Tyneside ME Support Group who have a team of 4 dedicated representatives working hard to resolve the issues, whilst remaining determined to achieve the right outcome from the patient perspective.
The dedicated time and funding already allocated to CFS/ME services via Professor Daymond is something we all wish to see continue, and it is important that this remains as a service additional to the Local Multi-Disciplinary Team.

Local Multi Disciplinary Team-
North Cumbria

Funding for this service is available from 1st April 2005. Whilst not strictly within the catchment area of ME North East, this LMDT will be included within the Central Network Coordinating Centre (CNCC).

I have attended two steering group meetings and it is interesting to see how the choice of service delivery is being approached to suit the needs of the area. The make up of the therapy teams is much the same as in other localities, and it is envisaged that the initial diagnosis/assessment will be by a GP with a Special Interest (GPSI) and a Clinical Nurse Specialist.

To engage the patient voice and determine the format and delivery of services, a stakeholders meeting it to be held in April 2005. Details of this meeting will be available on our website (or give us a call).

Easington Primary Care Trust locality and Teesside PCT’s
(Hartlepool, North Tees, Middlesbrough and Langbaurgh)

As funding for services in this area was not successful, we have been in contact with all five Primary Care Trusts (working with the Cleveland ME Support Group). Despite a meeting with the commissioners of all the PCT’s and two follow up letters from ME North East requesting some form of support for CFS/ME services, we have not received any response from this line of approach. We feel strongly that although the bid for funding was unsuccessful, the need for services for CFS/ME was clearly identified and as a result the PCT’s should be addressing this as a matter of urgency.

Estimates show there are over 2,000 people with ME in this area (including 400 young people). The Department of Health clearly state that they expect the new services in other localities to share the take up of referrals, what needs to be agreed is how that can put into practice (and how will it be funded).

We have been successful in that Middlesbrough PCT (together with Langbaurgh, Hambleton and Richmond PCT’s) did agree to hold an educational event for interested GP’s and other health professionals. I have worked closely with Dr Tanja Braun to plan this event, which is scheduled for the 23rd March at Poole Hospital in Middlesbrough. Members of the Cleveland ME Support Group will also be attending, and I am sure we will both be reporting back to members in the next newsletters.

An up to the minute presentation on all the services in our area will be given at our AGM on Saturday 7th May 2005 (in Bullion Hall)

Key speakers will be invited to answer your questions. If you can't make it and would like to submit any written questions - send them to the office