People with life-limiting conditions are struggling to heat their home, eat enough nutritious meals and access mental health services, according to the CF Trust.
The charity warn that “many people are struggling to afford basic daily essentials with more people than ever needing financial assistance” adding: “This is taking a huge toll on mental health.”
So following the Conservative party conference in Manchester, they are demanding more resources to help those with long-term illnesses, with extra cash grants to those whose poor home environment damages their health.
The Daily Express has been campaigning for all adult CF sufferers to have free prescriptions as, incredibly, sufferers of the genetic condition are not exempt from paying.
In 1968 chronic illnesses like diabetes and epilepsy were included in a list of conditions warranting free prescriptions, a list never updated in the 55 years since – but many rare, genetic diseases like CF and PKU missed out.
David Ramsden, Chief Executive of CF Trust, said: “Time and time again we are hearing alarming stories of people with cystic fibrosis who cannot afford basic essentials, or are living in unsuitable accommodation which impacts their health and wellbeing.
“It is essential that everyone with CF has access to a social worker, and that the Government does more to address the financial strain experienced by those with CF to prevent further risk to long term health.”
Over 10,900 people in the UK have CF, caused by a faulty gene which controls the movement of salt and water in and out of your cells, meaning sticky mucus clogs up your lungs and bowels making hard to breathe and digest food.
To stay well, sufferers need access to a team of specialists including doctors, nurses, psychologists, social workers, physiotherapists, and dietitians.
However, the CF Trust’s new report ‘Support in Crisis: the unseen costs of Cystic Fibrosis’ found these multidisciplinary teams (MDTs) are often stretched, with only a quarter of services satisfied with their staffing levels.
An alarming 85 per cent of people who accessed a CF Trust emergency grant said without it, they would have struggled to feed or heat themselves – while 11 per cent more asked for grants than last year.
Marie Donnelly, a cystic fibrosis social worker, said: “More and more of the work CF social workers are doing concerns families not having enough to eat or being unable to cope with the pressures of huge rises in energy bills.
“Support services within local authorities are already stretched, and getting access to them is increasingly difficult.
“Many families simply don’t have the time, the energy or the confidence to navigate these systems while juggling the increasing demands of daily living.
“We know that poor home conditions can adversely affect health, and we need CF teams to have the resources to advocate for people with CF and empower them to force housing providers to make changes.
“Having someone who understands CF pushing to meet social needs and explaining the implications of the condition to services who very often have never come across CF before can be a game changer.
“People with CF need and deserve a fully staffed medical team to deliver this help.”
The CF Trust also asks that doctors be free to prescribe a range of measures from support with energy bills to domestic ‘white goods’ essential to support improverished sufferers.
CF sufferer Michael Winehouse said: “There is definitely a difference in living costs for people with CF. Energy bills are huge, the price of food keeps rising, and additional costs for prescriptions or attending appointments can mount up.”
Last night a government spokesperson told us: “We know people are struggling with the rising cost of living and that people with cystic fibrosis face extra costs.
“Which is why many will receive an extra £150 disability support payment this year, on top of £900 of cost of living help for those on means-tested benefits and a 10.1 per cent increase to disability benefits.
“We are providing record financial support worth an average £3,300 per household.
“The social care workforce is at the centre of the ‘Next Steps to Put People at the Heart of Care’ plan which is backed by £250 million for staff to develop new skills, get better training and have career development.
“We’re also transforming our country’s mental health services, with up to an additional £2.3 billion being invested annually until 2024,so an extra two million people can get the support they need.”
For information or support, Cystic Fibrosis Trust’s Helpline is available on 0300 373 1000. Cystic Fibrosis Trust’s Cost of Living Fund opens today. Visit cysticfibrosis.org.uk/cost-of-
