SPECIALIST nurses from Worcestershire’s hospitals are raising awareness of a life-limiting lung condition and encouraging people with the disease to attend a new support group in Malvern.
More than 6,000 people in the UK are diagnosed with idiopathic pulmonary fibrosis (IPF) every year, yet the condition is still relatively unknown.
IPF hit the headlines recently after well-known TV presenter Keith Chegwin died from the condition in December last year and celebrity Katie Price revealed her mother had been diagnosed.
Respiratory nurse specialist Nancy Howard, from Worcestershire Royal Hospital, has set-up a dedicated support group in Malvern for patients and carers who are affected by lung fibrosis – of which, IPF is the most common condition.
IPF is a condition in which the lungs become scarred and breathing becomes increasingly difficult.
It’s not yet clear what causes it, but it usually affects people over 70 years old and is rare in people under 50.
Some treatments can help reduce the speed at which IPF worsens, but there’s currently no treatment that can cure or reverse the scarring of the lungs, so once diagnosed, a patient has a limited life expectancy.
The support group meets in the Link Room of St Matthias Church on the first Tuesday of every month between 1.30pm and 3pm.
“We need to raise awareness so that people don’t get looked at blankly when they tell their relatives they have IBF,”said Nancy.
“The problem is isolation. People with lung cancer have groups and support from charities that they can rely on, but there is nothing for people with lung fibrosis.
“And yet these patients their symptoms are worse – they aren’t able to go out without huge supplies of oxygen.
“So they can become quite socially isolated. The group helps with that as they get to speak with other people going through the same thing as them.”
The team are also one of the leading researchers of condition in the UK, recruiting patients with the condition to take part in two research programmes in Worcestershire’s hospitals.
The research aims to shed light on some of the causes of the disease, with the two studies involving the genetics behind the condition as well as whether a patient’s occupation can increase exposure to lung fibrosis.
Respiratory research nurse Alison Durie added: “There is hope. But it requires publicity.
“The more people we can get involved in clinical trials, the more research we have to go on.”
The ultimate aim is to improve the rates of diagnosis, treatment and life expectancy of those with the condition.
For more information about the Malvern Support Group, email Nancy at [email protected].
