How does the Welsh Government ensure the standards set out in NHS service specifications for rare and complex diseases like Cystic Fibrosis are adhered to, and to what extent, if any, do these specifications represent a statutory expectation of care that patients should expect to receive as a minimum?
A new UK Rare Disease Framework was published in January 2021 which sets out the vision for rare disease services across the UK. A Welsh Rare Disease Action Plan is currently being developed and it is anticipated this will be published by the end of June.
The Welsh Health Specialised Services Committee (WHSSC) is responsible for commissioning cystic fibrosis (CF) care in Wales. The WHSSC Cystic Fibrosis service specification sets out the standards of care that CF centres are expected to deliver. The specification is in line with the NHS England service specification and sets out the standards recommended by the Cystic Fibrosis Trust.
During 2018/19, WHSSC made significant investment in the All-Wales Adult Cystic Fibrosis Centre, based in Cardiff intended primarily to support the recruitment of additional Multi-disciplinary team (MDT) staff to meet the standards of care for CF patients.
In order to assure standards, a service improvement and innovation day is taking place in July 2022.