British Lung Foundation Caregivers Study

[chrisw]

Cinderella carers live in fear, survey shows

Most carers of people with lung conditions have no practical help at all, even though they are dealing with frightening attacks of breathlessness that require frequent hospitalisation, according to a new survey by the British Lung Foundation.

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”.
more details at www.sentpressrelease.co.uk/releases/default.aspx?AID=624834&IData=m98179

[maryaz]

When and if THAT STIGMA is ever gone, it will not be in our lifetime, I bet.

It is soooo frustrating. With my husband having gone thru lung cancer treatments and surgery this year, I sort of got into some cancer message boards. I detected the same thing though with the cancer. They post like the money doesn't come for that like the other cancers because of smoking.

I don't want to get started but had to share my same old feeling on this. There is more than just smoking. When these people tag the smokers, they also catch the non-smokers.

Many smokers never get lung disease. No one ever wants to talk about how smoking addiction developed to what it became. There are other causes too.

[Deleted]

wow,


My father died of lung cancer and never smoked, im sure the cancer spread from some place else in his body, also on his death certificate it says he died of " Natural Causes" your so right Mary, STIGMA, it is a STIGMA

[LindaNY]

I don't think the stigma will ever go away.

[cocojax]

I don't think the stigma will ever go away until we confront the situation head on and demand the medical treatments we DESERVE.

People always, always want to poke there fingers and blame something...and lets face it, if I had money given to me every time someone said to me boy you get sick a lot, I would be rich...

This is not a new thing because people in the medical profession are human, the problem is like a lot of other jobs some people should not be doing the jobs they are...

Then there are the medical professionals that are completely the opposite, your never see judgment in their eyes, that was my first visit on Saturday to the Emergency Dept in the Village of Port Perry, treated the best....

[Blossom/Jackie W.]

Change doesn't happen unless we make/force it to happen.

[Deleted]

Hi all,

I hope everyone is doing good. Helpfulness and caring.Yes, I think so.
A single flower does not make a spring.Between friends all is common.

A portion of this post has been deleted by Admin re: Breaching of the Rules of the Road re: Spam.