The National Service Framework for Long-term Conditions - by Andrew Russell

I don't need to tell you this, but people with spina bifida or hydrocephalus, particularly adults, experience all manner of problems and delays in getting the services they need because of their disability. This applies to many services, right across health and social care. So over the last 3 years or so ASBAH, in partnership with other “neurological” charities, has been pushing for better national policies and higher priority for those with neurological conditions.

The result is the National Service Framework (NSF) for Long-term Conditions, published by the Department of Health in March 2005, concentrating on neurological conditions. Although ASBAH resists the “medical model” of disability, we welcome the NSF because it is the only way to achieve the kind of recognition that, for example, cancer or heart services receive in the pecking order for funding.

The NSF set out “Quality Requirements” which apply to health and social care services working with local agencies which support people to live independently, such as providers of transport, housing, employment, education and benefits. These matter greatly to people with spina bifida and hydrocephalus.

In the NSF, neurological conditions are divided into four broad types: sudden onset; progressive diseases; intermittent and unpredictable; stable but with changing needs. Spina bifida fits best into the last (“stable”) category, because it is a condition rather than a disease. The kind of services that are vital to ASBAH's service users include things like personal care and family support, equipment and accommodation, early diagnosis of developing symptoms, and sometimes community based or vocational rehabilitation. Hydrocephalus is often stable, but can be unpredictable requiring acute intervention, so families and professionals need to be informed and prepared for this too.

The NSF puts great emphasis on a “user-centred” service, calling for “better co-ordination of services and information - sharing across relevant agencies”, including the voluntary sector. What is needed now is a bringing-together, at local level, of these interested parties. We in ASBAH must do all we can to be there and make sure that the needs of our members are not forgotten. These needs are to do with the day-to-day essentials to live a decent life, including equipment, house adaptations, mobility aids, continence management services, correct benefits, training in independence and skills and so on.

Great emphasis will be put on the development of acute neurological disease treatments, and there is a danger that too little attention and resources will go to the day-to-day essentials. Unfortunately, no specific financial resources have yet been allocated by the government to the NSF, but we are assured that money will be made available. We are going to need well-informed people to be advocates for spina bifida and hydrocephalus at local planning level.

Local planners and service commissioners may need to be reminded that people with conditions such as spina bifida and hydrocephalus spend most of their time at home and in the community, not in hospitals and clinics. The social care aspects of the NSF are just as vital as the medical services. We in ASBAH, in Local Associations and the National Association, are going to have to fight our corner.

That's why we're keen to work with someone in every Local Association who is willing to take on the role of champion, with our help and support.