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Social care for people with cystic fibrosis is lagging behind medical improvements, writes Sally Turner.

I was diagnosed with cystic fibrosis at the age of six. I am now 21. Having made the transition myself from paediatric services to an adult cystic fibrosis clinic, I am aware that both medical and social care for adults with the disease is less than satisfactory. The problems we face are far from insurmountable, but without greater awareness of our needs there seems little prospect of them being successfully addressed.

Cystic fibrosis is the most common inherited, life-threatening disease in the UK. More than 7,000 people suffer from it and one in 25 people are carriers. Despite this, there is an astonishing lack of public awareness - it seems the only people who know about CF are those whose lives have been touched by it in some direct way.

As research and treatment improves, the lives of CF patients are getting longer. Life expectancy for babies born with CF has increased rapidly from just five years in 1964 to 31 years today. Many more patients reach adulthood, only to find that the services they need - and may have been used to as a child - are no longer available to them.

There are not enough specialist centres available in the UK to cater for all CF patients. As a result, some patients have to travel long distances to a service. Funding is also insufficient. The wide range of symptoms mean a large team is required. However, many posts are filled only part time and some teams are missing key posts altogether.

Some CF clinics have social work support provided from the voluntary sector, via Barnardo's. Workers attend every clinic and are available to be contacted at other times. They provide a wide range of support and information and can play a very active role in the lives of some CF patients, often from first diagnosis.

Since the charity's remit is to work with children and young people, Barnardo's support is only available to patients up to the age of 21. Many CF clinics provide no specialist social work support at all. Patients may have limited access to a hospital-based social worker or have to rely on what information they can gain from their local social services department. Neither option is satisfactory as CF issues are not usually well understood by social workers who do not deal with them as a specialty.

Another blow for adult CF patients is the imposition of prescription charges. The medical exemptions list was drawn up when most CF patients were not expected to survive childhood. Many have to take up to 40 pills a day to aid food digestion and combat lung infection, yet the government is making them pay a high cost.

Campaigns to remove prescription charges - waged by the Cystic Fibrosis Trust, patients and their families - are repeatedly ignored, even though less severe conditions are already on the exemptions list.

If adult patients are to receive improved care and support, much more must be done to inform the public about the issues. Those of us with CF need help if our voices are to be heard.

Sally Turner is a service user with cystic fibrosis.