Shadow Health Minister and Clwyd West AM Darren Millar supported the Cystic Fibrosis Trust yesterday at their Welsh Assembly event.
The event named Cystic Fibrosis Care and Celebrating the Patient Voice aims to look at what was has been achieved for Wales in cystic fibrosis care, highlight challenges for the future and celebrate patient voice. A report has been published by the Welsh Health Specialised Services (WHSSC) outlining cystic fibrosis services and patient experiences in Wales.
Cystic fibrosis (CF) is a progressive disease with the average age of death for a person with CF of around 29 years old. Despite this, because of advances in treatment and access to clinical expertise, many people with CF are living longer than ever before.
Darren said:
“I was delighted to attend the event to show my support for the Cystic Fibrosis Trust. Listening to consultants that provide cystic fibrosis care in Wales is inspiring. It is great that patients can share their experiences and hopefully this can mould our work and objectives for the future.
“The Welsh Government and Assembly Members have to be mindful of the challenges for the future, so we can anticipate and plan to ensure access to medicines and adequate facilities are in place so those with cystic fibrosis.”
CF is one of the UK’s most common inherited conditions, affecting around 10,000 babies, children and adults. CF is caused by a faulty gene that causes the lungs, digestive system and pancreas clogging them with a thick sticky mucus.
Kayleigh Old, Public Affairs Officer for Wales at the CF Trust said:
“It’s really important that The Cystic Fibrosis Trust celebrates cystic fibrosis care in Wales but it is also crucial that we are aware of the challenges for cystic fibrosis services for the future. We are working with commissioners, health professionals and really listening to patients about what is important. We hope to work collaboratively and work for patients, to gain the access to care and medicines that make a daily positive impact on their lives”.
The Cystic Fibrosis Trust has supported the WHSSC in their review of cystic fibrosis services in Wales, and their work to rectify staffing issues and their ability of listening to patients, about what is important to them. The Trust is working to ensure that standards of care are met in regards facilities and resources for patients now and in the future.
More information on cystic fibrosis, which affects more than 450 people in Wales, can be found at: www.cysticfibrosis.org.uk
Picture Caption: Clwyd West AM Darren Millar and Kayleigh Old, CF Trust Public Affairs Officer for Wales, at the Assembly event.