As you will know the CFS/ME services presently operate in four localities across the northern region: North of Tyne, South of Tyne, County Durham & Darlington and North Cumbria. There is no dedicated service for the Teesside area. These four teams do not, apart from exceptional cases, serve the needs of the severely affected. A very small number of domiciliary visits are made, and even in these cases it is not clear what the special needs of this patient group are.

The National Institute for Health and Clinical Excellence (NICE) guidelines published in 2007 clearly state that specialist expertise is needed when planning and providing care for people with severe CFS/ME. To deliver specialist care we must know what the particular requirements for this group of people are.

The Northern CFS/ME Clinical Network have agreed to fund a small pilot to identify a health needs assessment for the severely affected-housebound patients. ME North East will undertake this work and will engage a social scientist to carry out an independent study.

We are asking for your help – we are looking for approximately 12 adults (aged 18 and over) from across the region to take part. Interviews will take place at your home and we would welcome a friend or carer to be with you should you need or wish. Interviews will take approximately two hours and can be broken up over a period of 2-3 visits should this be required.We are asking that you allow us to tape your interview to allow us as much open discussion as possible and a report will be written up later.

The information will be anonymised and we assure you of complete confidentiality.

The completed report will be presented to the Northern CFS/M Clinical Network board, and will hopefully form the basis to develop a business plan for domiciliary services in the future. We will of course share our findings with all participants.

It will be equally important for us to use the findings of this health needs assessment in our new project to support the housebound and severe ME patients should our Big Lottery application be successful.

We wish to recruit volunteers and begin the interviews as soon as possible – can you help? Please call the office on 0191 3892222