The need for awareness

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.

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.

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.

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.

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.

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.

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.


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