A life changing result – States Debate on the Deputy Roffey Medicine and Treatment Funding Requete – 12th December 2018

Guernsey has an approved list of drugs and treatments, the ‘White List,’ from which local health professionals are allowed to prescribe. This list contains significantly fewer treatment options than the NHS approved equivalent. As a result some Guernsey patients, particular when referred for tertiary care off Island, find they come into conflict with this list and are often denied life changing treatment, unless they can afford to pay or have very good health insurance.

Public awareness of the serious inequalities within our current system have been growing, as have politicaltensions, resulting in the Requete, which was debated in the States on 12th December 2018. In the weeks ahead of the debate I lead an action group which hosted a series of meetings with our Deputies. We presented a series of personal case studies demonstrating the diversity of medical conditions involved, ages, economic and social backgrounds, showing the very real impact the current policy is having.

 This is just one example of how serious it has become. One young lady, aged 23, was told she would quickly go blind without a £10,000 operation to save her sight, an operation available free in Jersey to Jersey residents, free on the NHS to UK residents but not to Guernsey people. The £30,000 operation Guernsey would pay for meant she would have to wait until she effectively went blind. The impact to her personally, her ability to work, pay her rent, drive, impending marriage was obviously huge. With the help of the Guernsey Blind Association and a personal loan she was able to have the operation in Jersey, all at her own expense. Deputy Roffey has offered to take up her case. Many of the other personal stories that were told, often by the individual concerned, are much sadder and do not have such positive outcomes.

 Our engagement with the media, politicians and the requete were timed to impact on a review that the Committee for Health and Social Care had already committed to bring back before the States at the end of next year, too late for many. Our surprise at the significant level of engagement seen from our deputies was matched by their surprise and shock at how big the problem has actually become. How systemic failures, not just health care rationing, are impacting so many across our Island.

 A week before the debate and the day before we were due to meet with Deputies St Pier, Trott, Soulsby and LeClerc, the Committees for HSC & ESS laid an amendment to the Requete. The amendment directed Policy & Resources to find the money whilst bringing forward the review timetable to allow inclusion in the next budget.

It says, “the review should consider, as a minimum, the implementation of a policy for the availability of all drugs, treatments and devices approved by NICE Technology Appraisals. The findings of the review should be published no later than the end of the second quarter of 2019.”

At our meeting it was clear that P&R supported the HSC & ESS amendment and Deputy Soulsby asked us to trust her and the CHSC with this amendment and the review. Deputy Soulsby then emailed me later that night with these further assurances, “In terms of our amendment, I can assure you categorically that there is no hidden agenda here. We are bringing forward the review so any change can be funded through next year’s budget process, using independent public health specialists and have said that the minimum is for NICE recommended TAs to be the new normal. From our point of view, we need a review to give us independent advice on how we can make things better and how we move from where we are now to the new model, amongst other things.”

Whilst a degree of political suspicion remained for some, especially the requerants (after all it is most unusual for a committee to add an amendment to a requete that gives youmorethan you were originally asking for in a shorter time scale!), strong assurances were repeated in debate. The States sensibly took those assurances at face value and voted for the amendment (which had P&R backing) rather than the requete which did not.

The group are very content with the outcome, it is life changing for many, but will of course be watching developments. We all know how expectation can turn to disappointment where the States are concerned! Importantly we have been invited to be a part of the HSC review and are meeting with the Director of Public Health, Dr Nicola Brink and the Medical Director Dr Peter Rabey on 20th December. A very positive and encouraging engagement with the States and it’s Committees. 

A very Merry Christmas and Happy New Year to you all.

Mike Read

CF Guernsey