Ridgewell man launches support group to help others cope with ‘shock’ of pulmonary fibrosis diagnosis
PUBLISHED: 16:00 15 September 2017 | UPDATED: 08:24 18 September 2017
A 70-year-old newlywed living with a debilitating lung condition has launched a support group in Essex to show other patients and carers they are not alone.
Malcolm Mason, from Ridgewell, a village near Haverhill, was diagnosed with idiopathic pulmonary fibrosis (IPF), which causes progressive scarring of the lungs and limits the amount of oxygen that can get into the blood, 10 years ago.
The fatal disease has left Malcolm with severe breathing difficulties and he relies on the use of supplementary oxygen 16 hours a day.
Malcolm had been attending the Papworth Pulmonary Fibrosis Support Group in Cambridgeshire, but he wanted to establish sessions closer to home.
“When people are first told they have the disease they are in a state of shock,” Malcolm said.
“When we come to the support groups, because it’s a more informal setting and there’s people who are all in the same boat, it does seem to allay fears. Not just the patients but the carers too, because our partners are our carers and they are the ones who have to shoulder a lot of the problems and they have to be so patient.”
Despite his struggles, Malcolm this month married his partner of more than 20 years, Diane.
On September 14, Chelmsford MP Vicky Ford officially opened the new Mid Essex Pulmonary Fibrosis Support Group, which is backed by charity Action for Pulmonary Fibrosis (APF), the Papworth Pulmonary Fibrosis Support Group and Mid Essex Hospital Services.
APF estimates there to be more than 2,000 people living with IPF in East Anglia and 30,000 in the UK, although there is no official register of patients, which is something the charity is campaigning to change.
Describing what impact the illness has on his life, Malcolm said: “It slows me right down. You can’t do a lot of things that you used to, for instance cutting the grass.
“If affects different people in different ways, but it’s usually the breathlessness that gets you. You can’t walk as far, you can’t go up the stairs or slopes easily.”
Lorna McLauchlan, APF support group coordinator, said: “It can be a lonely and confusing time following diagnosis and whilst a support group can never replace expert clinical advice it can provide a safe environment to chat to others in a similar position.
“The sharing of experiences can help people cope with day-to-day issues as well as making new friends, whilst education from expert speakers can help improve feelings of control and a sense of wellbeing.”
Mid Essex Pulmonary Fibrosis Support Group will be held every two months at Springfield Parish Centre in Chelmsford from 10am to 12noon, with the next meetings scheduled for November 9 and January 11.