The role of the Clinical Network Coordinating Centre is
• To give guidance and support to local multi-disciplinary teams
• Link Local Clinical Teams and share best practice
• Deliver Education Training and Development
• Undertake Monitoring and Evaluation
• Support Clinical Research
• Support the continuing development of clinical services
• Work closely with ME North East
• Link with the Department of Health

Dr Gavin Spickett Consultant Immunologist is the Clinical Champion for this CNCC. Louise Wilson is the Clinical Coordinator (currently on maternity leave). In Louise’s absence ME North East have signed a Service Level Agreement for Jennifer Elliott to give maternity cover equal to one day per week from 1st June to the end of January 2006. Julie Thompson is currently the administrator for the CNCC and doing an excellent job in setting up communications and networking with the teams. Julie will also be taking maternity leave in October until the end of February (ME North East will provide cover under a similar arrangement with the CNCC).

Funds allocated from the Department of Health for the CNCC role is separate from that financing the Local Multi-Disciplinary Teams. The CNCC does not take funds from the pot designated for frontline services to patients.

The Steering Group of the CNCC have been meeting for almost 18 months. A strategic review of the services was held in July and all the lead personnel took part. This has led to an activity and action plan to oversee the implementation of the new clinical services and an agreement to identify best practice procedures to networking and share information and expertise.

A second national collaborative event bringing together the 13 CNCC clinical champions, lead professionals and clinical co-ordinators is to be held in Bristol in November this year.
From the blank canvas at the start of this journey it will be interesting to see how far ME services have travelled, and the shared outlook for the future.

New Clinical Services for ME
Updates on the Local Multi-Disciplinary Teams (LMDT’s) across our Region

The Four Areas to receive funding are
• County Durham and Darlington
• North of Tyne (Newcastle, North Tyneside and Northumberland)
• South of Tyne (Sunderland, South of Tyne and Gateshead)
• North Cumbria
The Tees Valley area (Redcar, Langbaurgh, Middlesbrough, Stockton and Hartlepool) and Easington were not successful in their bids for funds. However the bid in itself identified the needs for people with ME in this area and the Primary Care Trusts are required to investigate how to meet patient needs.

COUNTY DURHAM AND DARLINGTON LMDT
This service is led by Consultant Psychiatrist Dr Keith Linsley and supported by Dr Peter Cook General Physician at University Hospital North Durham. A team of four therapists including; physiotherapy, occupational therapy, nurse specialist and psychology have been appointed and have already undertaken a full induction course and participated in local and national training. More is planned, including workshops involving ME North East and patient representatives. A number of the therapists attended ME North East Conference in July and found it extremely informative and helpful.
The Clinics will be operating from October and everyone involved in the team is looking forward to seeing and helping people with ME. Both Dr Linsley and Dr Cook have been seeing a number of patients in recent months and can now pass them on to the therapy team, a referral criteria for GP’s has been agreed and a patient pathway outlined.
This team has agreed to introduce a pre-clinic questionnaire. There is a lot of information to complete and ME North East have agreed to pilot this with a number of members, and feedback the responses to the steering group. (If you would like to participate, please contact the office). We will be putting together detailed information packs for the teams to share with patients, and we will collate a comprehensive resource pack for them to use as a staff team.
Clinical services will initially be provided at the Chester le Street Hospital, Shotley Bridge Hospital and University Hospital North Durham. Accommodation in the South of Durham is also being arranged, as well as identifying a physician to cover this area. The full staff team will meet on a regular basis as the service takes shape.

NORTH OF TYNE (Newcastle, North Tyneside and Northumberland) LMDT
Consultants Dr Gavin Spickett (Immunologist) and Dr Michael Snow (Infectious Diseases) have been seeing patients over several months in their respective clinics. As the therapy teams were not in post it was agreed to see only new patients unless there were changes in condition or they required support for the Benefits Agency. The therapy team have now been appointed and include; physiotherapy, occupational therapy and psychology. Induction and local and national training is presently underway, with further training planned including workshops involving ME North East and patient representatives. One of the therapists attended our ME North East Conference in July and found it extremely informative and helpful.
Clinics will be operating as we go to press. Referral criteria and a patient pathway have been agreed, and ways of existing patients accessing the therapy team are being designed.
We will be putting together detailed information packs for the teams to share with patients, and we will collate a comprehensive range of resource materials for them to use as a staff team.
Consultants will continue to see patients in their respective clinics, and initially the therapy staff have acquired accommodation in central Newcastle for clinic services. The full complement of the team will have regular meetings as the services take shape.

SOUTH OF TYNE (Sunderland, South Tyneside and Gateshead) LMDT
Consultant Rheumatologist Professor Terry Daymond has two designated clinics per week for ME/CFS that have been and will continue to operate for the present time. This dedicated service is additional to the new clinical services in the South of Tyne area. Professor Daymond is the clinical lead for this service and will be giving some extra clinical time as an integral part of the new team. He will be involved in the medical diagnosis and assessment of all patients presenting to the local multi-disciplinary team. There has been lots of involvement from the beginning from the Sunderland and South Tyneside ME Support Group, Pauline Donaldson and her team (Jean, Tom and Amy) have dedicated a great deal of time and effort to ensure the patients voice is heard and the services suit the needs of ME. It has not been plain sailing, but despite the intricacies of detail and the complex nature of setting up something new within the NHS, the outline of services is beginning to show rewards.
Slightly behind the two teams previously mentioned, it must be recognised that South of Tyne was a “second wave” of funding and did not begin this process until much later than them. Having said that they are gathering speed and are running very closely behind – it is imperative that services are up and running at the earliest date, the Department of Health Funds were dedicated until March 2006 – to ensure continuation of funding from the Primary Care Trusts, the teams must be able to show activity levels. Recruitment is presently underway and every effort is being made to speed this process up. It is hoped to have the team in place and active by the end of October 2005. Monkwearmouth Hospital will be the venue for the clinics in the first instance in Sunderland and accommodation in Gateshead and South Tyneside is also being sought. A patient pathway and the referral criteria for GP’s have been agreed.

NORTH CUMBRIA LMDT
Dr Nigel Roberts Clinical Psychologist is the clinical lead for this service. He has had a lot of support from Dr Deb Lee a Paediatrician with a special interest in ME. A successful stakeholder meeting was held in Carlisle in April this year with many patients and carers attending. The feedback from this day helped to shape the service planning and development. A team of three therapists have now been recruited and will attend a comprehensive two-day national training programme this month. Networking across the other teams and being involved in joint training and education programmes are being arranged. This team are developing services for young people from the beginning and a child nurse specialist is part of the team. They already have a number of referrals with an ME/CFS diagnosis and these will be taken up by the therapists and discussed at full team meetings starting mid-September. Referral criteria will be circulated to all GP’s and a patient pathway has already been agreed. Accommodation is being identified across the area; full details will be available locally in the next few days. ME North East will produce a detailed information pack for staff and patients, and will provide a comprehensive range of resource materials for the staff team. The Steering Group are looking for additional patient representatives and invite anyone interest to contact them via ME North East.

Tees Valley and Easington Primary Care Trust Areas
Working with our colleagues in ME Support in Cleveland and the Middlesbrough Primary Care Trust we hosted a successful training event for interested health professionals in Langbaurgh and Middlesbrough. Expressions of interest from clinical staff in seeing services provided in their area were clearly indicated. Following this we are now working together with the Commissioner for all four Tees Primary Care Trusts (and Easington). A meeting of all five PCT Commissioners have expressed a wish to consider a service within their catchment area. We are presently preparing a business case for CFS/ME services to be presented to a meeting in October 2005. Should this win approval we may be included in the next year financial round and see services coming on line end of 2006 – early 2007. This is a really exciting opportunity to secure services for all people in Cleveland and Easington with ME.

As you see most of the teams are now up and running – if you would like a referral to the local multi-disciplinary team in your locality please give us a call and we will give you details.

In the next edition of Focus we will be able to produce full details and referral procedures for your information. We would appreciate your feedback if any of you attend the clinics, whilst we will be closely involved in the monitoring and evaluation together with the teams, we can all benefit from your experiences to help the new clinics shape and grow