New Cystic Fibrosis service opens in Belfast

The Cystic Fibrosis Trust and Belfast Health & Social Care Trust Charitable Trust Funds have co-funded a new project to provide additional benefits advice to people with cystic fibrosis in Northern Ireland.

The project aims to enable Citizens Advice Belfast to provide 4 hours a week of specialist advice for cystic fibrosis patients and their families and carers over the phone, via Skype/Facetime, or face-to-face.

The existing cystic fibrosis social work teams in Belfast have been struggling to meet demand for advice on benefit entitlements. This service will ensure that the cystic fibrosis community in Northern Ireland receive the benefits that they are entitled to.

There are currently 455 people living with cystic fibrosis in the area who are treated at either the Adult Regional Centre at Belfast City Hospital or at the Royal Belfast Hospital for Sick Children.

Due to the risk of cross-infection, people with the condition cannot meet one another.  This brand new service means people with cystic fibrosis can utilise online platforms and benefit from a virtual service dedicated to them and their needs.

Alastair Reid, Consultant Cystic Fibrosis Paediatrician at Belfast Health and Social Care Trust says there’s an increasing number of teenagers and young adults with complex needs: “Patients and their families need advice on employment rights, housing and benefits, particularly if they have had to decrease their hours of work due to deteriorating ill-health.

“Welfare Reform does cause anxiety to patients and their families and this can impact on their health.  Ill-health raises problems with money, employment, education, housing and family issues and to be relieved of worry on these issues aids recovery.”

Lorraine Mullan, from west Belfast, is studying accountancy and is a mum of two. She has cystic fibrosis and says due to her changing circumstances this new service would be a huge benefit: “The medical team I am in touch with are a huge help but they don’t know about the benefits you are eligible for. In the past when I have been to the job centre their response has been mixed.  

“With cystic fibrosis, people can’t necessarily see a physical disability and they don’t understand what it is like to have the condition. Knowing I have somewhere dedicated to helping me really helps to take away the stress and worry – this’ll be good for my health generally.  The service is a lifeline, during a difficult time of change.”

Anne Calvert, Cystic Fibrosis Social Worker at Belfast Health and Social Care Trust, says: “People with chronic diseases such as cystic fibrosis must navigate an increasingly complex benefits system, often having to make critical decisions that could impact their health and wellbeing without getting appropriate advice and support.

“This scheme will provide much needed benefits advice to people affected by CF across Northern Ireland, enabling them to make informed decisions about their individual circumstances. With approaching welfare reforms, this kind of support is needed more urgently than ever.”

Jacqueline Ali, Head of Information and Support for the Cystic Fibrosis Trust says: “The Cystic Fibrosis Trust is delighted to be supporting this initiative to provide much-needed welfare advice and support to families and individuals affected by cystic fibrosis in Northern Ireland.

“Cross infection risks prevent people with cystic fibrosis from meeting in person, so technologies such as Skype which provide ‘face to face’ interaction without the need to meet in person are an important way of delivering support to the cystic fibrosis community and reducing feelings of isolation.”

The scheme will be funded initially for a one-year period. Find out more at cysticfibrosis.org.uk or call 0300 373 1000.