April 25, 2018
From Mike Read – Cystic Fibrosis Guernsey
Many of you may have read Deputy Roffey’s recent column in the Guernsey Press entitled “Should we spending more” and my subsequent response as President of Cystic Fibrosis Guernsey. Essentially Guernsey patients suffering from a range of serious life-threatening medical conditions are being denied funding for some of the drugs which are used by the NHS to treat those illnesses. Put bluntly there are fewer treatment options available to Guernsey patients than UK ones. This is a situation that has crept in underneath the radar over the last few years but is beginning to become most apparent in respect of some cancers, cardiac conditions and pulmonary conditions but has wider implications for all Islanders.
As a representative of a charity whose members are heavily reliant on off-Island care by the NHS and father of a daughter likely to be impacted by this policy I took the opportunity of meeting with Deputy Roffey and Deputy Merrett to discuss the divergence of policy that has occurred between us and the UK and it’s likely greater impact for us as a group. It was clear to me that they were concerned that HSC might be leading us down the wrong path.
I was reassured to hear that they are pressing HSC to bring an amendment to current policy to the States for debate, possibly in June but this is far from certain. I would, therefore, urge GDA members to contact Deputies Roffey and Merrett directly with your concerns and with evidence that they might use to strengthen their argument for a change of policy. Should anyone one wish to contact me for more information before speaking with them then I would also be very happy to hear from you.
The final paragraph of Deputy Roffey’s column sums this up and should concern us all. It reads, “One thing I am certain of, though, is that the policy will have such a profound effect on some of the most vulnerable islanders with serious health conditions that it really needs to be debated both by the States and the wider community”. This is really really important for all of us, let’s start talking about it.
President CF Guernsey