The Voice of Spalding and South Holland
Cystic fibrosis sufferer Jane Jones says Lincolnshire should have treatment facilities. Photo: VNG240614-17
A former councillor is calling for treatment facilities for cystic fibrosis sufferers to be made available in Lincolnshire.
And sufferer Jane Jones says Spalding’s “under-used” Johnson Community Hospital could be a venue.
Jane is a rare case in that she was only diagnosed last December, at the age of 62. Usually it is spotted in early childhood.
The diagnosis after a CT scan came as a surprise and a small relief as doctors feared that a mass on her lung was cancer.
Symptoms of cystic fibrosis, which is an inherited disease, are persistent coughing and wheezing, and recurring chest and lung infections.
But what Jane, of Shire Avenue, Spalding, has learnt about treatment facilities has angered her.
“There is no unit and no support in Lincolnshire,” she said.
“I have to travel to Papworth Hospital in Cambridgeshire every fortnight. Some sufferers might have to go more frequently than that.
“In 2017 the facilities at Papworth are moving to Addenbrooke’s in Cambridge, which will add another 40 minutes to my journey.
“Why should we have to do this when we should have facilities somewhere in Lincolnshire?
“The Johnson is under-used so maybe that could be used for a unit.”
Papworth has a ten-bed unit and specialist doctors and nurses specially trained in treating cystic fibrosis.
Jane had pneumonia at a very early age, but was “really fit” during her childhood and was an active pupil at Spalding’s Gleed School.
Problems started arising in her 20s and she had her left lung removed about 15 years ago.
Her recurring problems were attributed to bronchiectasis, a long-term condition in which the airways of the lungs become abnormally widened, leading to a build-up of excess mucus.
As for the future, Jane – a former South Holland district councillor for St Paul’s – does not know if her condition will worsen.
She said: “I suppose it will get worse but cystic fibrosis sufferers are living to a better age because of improvements in medicine.”
A spokesperson for Specialised Commissioning NHS England (Leicestershire and Lincolnshire Area) said: “(We are) committed to ensuring patients have access to services which are of high quality.
“Every effort is made to ensure, where possible and where clinically appropriate, patients who live with conditions which require specialised treatment receive treatment close to home.
“There are times when the most appropriate service is a distance away from a patient’s home and they may have to travel further afield to a designated specialist treatment centre.”
