Sheila and Jennifer have been working with the Durham CFS/ME team to support a pilot therapy service for young people with ME/CFS. Most of the people they have seen to date have been referred from ME North East. Whilst the pilot was running we have met several times to consider a business plan to present to the Primary Care Trust to fully fund NHS support for this patient group. We held many meetings to draft a care pathway to include a multi-disciplinary approach including health, education, CAMHS and ourselves, and to write a comprehensive guide for parents and young people to outline the services available.
In preparing the business case we were clear that patient involvement to highlight the need for services would be a critical part of the plan to achieve success. We were told on several occasions that this would not be necessary at this time.
We are dismayed to find that the final business plan was completed and presented without including ME North East and patient views, and the bid had failed.
PCT commissioners have made it clear that failure was due to lack of evidence of need – exactly what we were hoping to provide.
We now know that the pilot service will cease at the end of March 2009. Only 21 young people have been seen to date, no new cases will be accepted and the existing 10 patients will continue to be seen until they can be discharged.
We will continue to work with the CFS/ME services in County Durham and Darlington and will participate more actively in future plans to introduce children and young people’s services for this locality.
In the meantime Sheila will continue to work closely with the Durham Paediatricians and the Durham Home & Hospital Support Services to help young people across the whole area.
We are presently working with the North of Tyne Paediatricians to prepare a business case for children’s services and will ensure that the patient voice is included.