November 1, 2018

Dear GDA members,
I would like to draw your attention to a requete due to be discussed in the December meeting of the States. This requete will have a significant effect on how the current HSC review of the future of drug funding is carried out.
Like many of you, those with cystic fibrosis (CF) rely on specialists in the UK for their care and treatment, expertise which Guernsey quite simply doesn’t have. The sort of treatment I’m talking about is not privately funded treatment but rather what any person in the UK would expect if they were treated by the NHS for the same condition.
One would reasonably expect that the same basic level of NHS treatment would be available to us all in Guernsey, whether we travelled to an NHS hospital or were being treated locally, sadly this isn’t the case. More often than you might realise, Islanders are given a cheaper alternative drug or unknowingly denied a treatment they would get if they lived in the UK, Jersey or the Isle of Man because it isn’t on our “white list”, the list our health professionals are restricted to when choosing a drug or treatment for you.
The ‘Drug Funding’ requete laid by former HSSD president Deputy Roffey has 4 wishes,
1. To direct HSC and ESS that as a minimum outcome to the current wide-ranging review of the funding of treatments, services and other interventions should result in Guernsey patients who are referred to the UK for tertiary treatment having access to the same range of medicines and treatments as NHS funded patients being treated in the same hospitals for the same conditions.
2. That such equality of access should also apply to those Guernsey patients post discharge or when they have returned to Guernsey.
3. To direct HSC & ESS to consider if there is any practical way to bring forward such a development ahead of the general review, i.e. before the end of this political term.
4. That in principle, in the medium term Guernsey should return to the policy of including all NICE approved drugs on the local white list.
HSC and ESS will rightly claim this will come at a cost but this is a little disingenuous as many of the drugs or treatments are not expensive, I will give you an example. One of our teenage CF sufferers, during a routine CF clinic visit to Southampton General Hospital, was prescribed by her consultant a corticosteroid drug called ciclesonide administered by inhaler. This drug reduces swelling and inflammation in her airways allowing her already damaged lungs to breath more easily. On their return to Guernsey the family were told they couldn’t have it as it wasn’t on our ‘white list’. This is a drug that can be bought for less than £20 for 60 doses. A year on this hasn’t been resolved and an alternative option has not been offered. Ironically, you the Guernsey tax payer, will have paid for return flights to Southampton, including a parent, taxis and on occasions over night accommodation, to then deny access to a £20 treatment.
Whist Cystic Fibrosis Guernsey fully supports the spirit of this requete we suspect little will change without affected Islanders speaking up and giving us your experience and the evidence of a bigger and wider problem than HSC and ESS would like us all to believe. Please contact me Mike Read or Deputy Peter Roffey if you would like to share problems you’ve had getting access to a drug or treatment.
Kind regards
Mike Read
07911 747747
Deputy Peter Roffey
01481 238435

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