Cinderella carers live in fear, survey shows

27/08/2008

In the BLF survey, more than a quarter (26%) of carers say a sudden worsening of symptoms such as extreme breathlessness has resulted in the person they care for being rushed to hospital at least six times in the past five years. One in 20 (5%) say this has happened more than 10 times in the past five years and most (85%) feel frightened when this happens. Nearly two fifths (39%) said they feel helpless and more than a third (36%) said they worry the person they care for is going to die.

 

Yet the survey shows that nearly three quarters (72%) of such carers have never received any practical support in their caring role and a staggering 83% have never had their needs assessed by social services. Many respondents said that they didn’t think anyone cared about them.

 

The BLF survey set out to find out more about the experiences of people who care for people with lung conditions such as Chronic Obstructive Pulmonary Disease (COPD) Sleep Apnoea, and rare lung conditions such as Fibrosing Alveolitis and Sarcoidosis. Carers described how their lives are dominated by their caring role, and said they had to be constantly on call. Many have their sleep interrupted every night, and holidays and nights out become a rarity.

 

More than two thirds (42%) provide full-time care, involving emotional support as well as help with washing and dressing, lifting and moving the person they care for as well as administering medication.

 

They said lung disease sufferers were treated as low priority by local health services because of the stigma associated with the disease. More than two fifths (42%) said the person they care for is treated as if the illness is his/her own fault while nearly a third (32%) said they get less support as a carer of someone with a lung disease because of the link between some lung diseases and smoking. 

 

One carer said: “If my husband had cancer, we would have received support right from the first diagnosis. But lung disease is the Cinderella condition in our society and no-one wants to know.” Time and time again they say: “I just want to be listened to - and for my role as a carer to be recognised.”

 

Dame Helena Shovelton, Chief Executive of the British Lung Foundation, said: “Lung disease is a hidden disability in our society and carers are often left to cope unaided with the terrifying experience of seeing the person they care for fighting for breath time after time, as well as the daily grind of supporting someone with severe restrictions on their mobility. We believe all carers should be offered an assessment of their own health and needs, and a named person or helpline they can call in the event of an emergency. 

We’ll also be working with health services to ensure better provision of information and advice to carers, including what to do in an emergency”.