This guest blog was contributed by Dr Jill Edwards, School of Healthcare, Leeds University.
When I was born I was not expected to live long enough to go to school, but a few months ago I celebrated by my 50th birthday. I have cystic fibrosis (CF).
Ageing with CF is now a reality for many people with the condition (nearly 9,000 in the UK). Most people with CF used to die before they became adults, but now there are more adults than children with this disease. And over the last 30 years, the life expectancy of people with CF has increased drastically, with a median age of survival ranging between 35.9 and 48.1 years. More and more people with CF are now likely to face ‘old age’, yet it is not known how prepared we are.
Cystic fibrosis is a serious, inherited, long term condition. A fault in a gene prevents salts (sodium and chloride) from passing in and out of cells in the body properly. This results in the production of thick, sticky mucus in organs. To be born with CF a baby must inherit two faulty genes, one from each parent.
CF mostly affects the lungs and digestive system, but as the condition progress other organs can become involved. In the lungs this thick, sticky mucus blocks the airways and cause frequent chest infections. In the digestive system the pancreas is unable to produce ‘pancreatic enzymes’, which help digest food, and without them food is not properly broken down in the body.
People with cystic fibrosis need a daily routine of treatment. Treatment will differ between individuals depending on how bad their CF is. Generally, daily treatment will include physiotherapy and exercise to clear the lungs of the sticky mucus, pancreatic enzymes tablets to help digest food, and regular (oral, nebulised and intravenous) antibiotics to help treat and prevent chest infections. Many people with CF also need a high calorie diet and insulin if they also have diabetes, which is a condition that most people with CF will eventually develop. New treatments such as gene therapy are being developed and will treat CF more effectively.
Living with CF can be hard work, especially fitting in essential time-consuming treatment with the demands of work and life in general. But it is not all doom and gloom and many of us live full and independent lives, and increasing numbers are having children of their own.
Ageing with CF has implications for both the individual and for health and social care services. As you grow older with CF, your chances of developing more complications such as diabetes, liver disease, and osteoporosis increases, so there is much more to deal with health-wise.
Participation in the labour market throughout a person’s life will be essential in order to prepare financially for older age. Obtaining and maintaining employment is difficult for many people with CF, and as we age participating in the labour market becomes even more difficult due to a combination of deteriorating health, lack of appropriate adjustments to working arrangements, and discriminatory (to disabled people) and ageist attitudes. Without life-long access to work, people with CF may struggle to access private pensions, state pensions, and save up money for ‘old’ age.
Ensuring adequate financial provision is becoming more and more essential as welfare benefits are cut and the likelihood of a decent state pension is diminished.
More research needs to be undertaken to find out how health and social care services will need to be delivered in order to best support people with life-long conditions such as CF. At the moment, many people with CF rely on family members to help with treatment, fetch prescriptions, and support them during bouts of ill health, among many other tasks. This support may disappear as parents die or children move away from home (in the case of people with CF who have children) and will need to be replaced with support from social services.
Against a background of cuts to health and social services life for older people with CF will not be without its challenges. But they are ones I am looking forward to meeting.
Read consumer advice about addressing ageism in health service and social care