National Assembly for Wales
Health and Social Care Committee
Inquiry into the progress made to date on implementing the Welsh Government’s Cancer Delivery Plan
Evidence from GIST Support UK – CDP 24
www.gistsupportuk.com
Registered Charity No: 1129219
Submission from GIST Support UK to the Inquiry into progress made on implementing the Welsh Government's Cancer Delivery Plan
Disadvantages to all patients with rare disease:
Difficulties getting diagnosis, Few treatments, Few specialists
Drugs which are not NICE approved are sometimes funded through the English Cancer Drugs fund where clinically indicated. Welsh patients are denied those drugs as Wales does not have an equivalent fund.
Welsh patients who are on the English border highlight the post code lottery from the two health care systems of Wales and England and we see this as an inequitable service to the detriment of patients
Evidence: The Specialist MDT hosted at Wrexham Mealor Hospital includes patients from Countess of Chester Hospital. Patients are subject to a postcode lottery which relates to a number of drugs in upper GI and liver cancer. This disadvantage to Welsh GIST patients includes lack of access to imatinib (at the higher dose not yet approved by NICE, or as adjuvant therapy) and regorafenib.
Welsh UGI Patients who attend the MDT at The Shrewsbury and Telford Hospital NHS Trust who require imaging scans have these undertaken at Stoke providing they are registered with a GP based in England. For the majority of Welsh patients referred to the MDT who are registered with a GP based in Wales, scans are undertaken in Cardiff, approximately 120 miles away. This can give cause considerable delay and inconvenience to those patients.
Shropshire patients who have undergone neoadjuvent chemotherapy routinely have a second PET scan but there is no funding available for the patients with a GP based in Wales to access this.
The new national Paediatric, Wild Type and Syndromic GIST Clinic in England at Addenbrookes Hospital, Cambridge opened in March 2014, and it would be a great advantage to Welsh patients if they could be referred there for an overview of their medical position (with the intention that their ongoing medical care continues with their usual providers). This would potentially greatly benefit TYA (teenage and young adults) with GIST, as this is an extremely rare condition in young people.
We have patients who elect to be treated at major cancer centres in England in order to get the therapies they need. They travel as needed for appointments. Not sure how this is funded.
These actions speak eloquently of disadvantages felt by Welsh patients over English patients.