I made this speech in the debate on a requete laid to bring in all NICE approved drugs and treatments. I laid an amendment on behalf of HSC to ensure that such a decision was not made without a proper evidence-based review as we knew the costs would be considerable and that members needed to know the impact before making a decision. It passed.
Sir,
We shall never have all we need. Expectation will always exceed capacity. The service must always be changing, growing and improving. It must always appear inadequate.
No, those are not my words, but those of the founder of the NHS Aneurin Bevan. Very wise words spoken exactly 70 years ago. History has proven him right.
The truth is there will never ever be enough money to pay for absolutely everything.
That is why we will never ever be able to provide everything that everyone wants however efficient we become. The question is not just, are we spending what we need to spend? But how do we know what we need to spend in the first place?
The current policy, with the creation of a white list and rules around access to drugs in tertiary hospitals has its genesis 15 years ago and was designed to ensure equity of treatment across the Bailiwick population within a tight budget. But let’s not forget, over this time, spending has increased in Health and Care and the number of drugs, treatments and services that we provide to the people of Guernsey and Alderney has also increased. However, over time, a gap has grown between the drugs and treatments available in the UK and the Bailiwick and the UK has introduced an End of Life Premium for some drugs and a Cancer Drugs Fund.
The question that the Committee asked itself at the beginning of term was, is such a gap justifiable? I don’t think I am wrong in saying that Members have felt uncomfortable about it. We wanted to review current policy and demonstrated our commitment under a resolution of the Partnership of Purpose policy letter and further by amendment to the Policy & Resource Plan in June.
Understandably, those arguing for extending the drugs and treatments available do so in terms of fairness. That it is not fair that people in the UK at least theoretically, get access to drugs not available here. However, that is not the only factor that needs to be taken into consideration. We also need to think about prevention, user-centred care, proportionate governance, a focus on quality and empowered providers and integrated teams. These are 6 of the 10 key aims of the Partnership of Purpose. Our current policy was designed before those Key Aims were developed and approved by this Assembly. We need to ensure future policy aligns with them. Members will see that these are specifically referenced in the terms of reference of the proposed review.
It is fair to say that the Committee has a lot of sympathy for the requete. It is hard not to listen to those who feel they have been let down by the current policy and hear their personal stories, not to want to do something about it immediately and I think the theory behind not asking for everything up front and looking for a minimum outcome prior to any review is laudable.
However, after giving it a lot of consideration, we just can’t support it because it is flawed. It makes no reference to funding. As things stand, if the requete was passed it could mean services elsewhere would need to be cut. It makes no reference to Alderney, although knowing Deputy Roffey, I am sure that was unintentional.
But, more fundamentally and ironically, by trying to stop one inequality it could lead to greater inequalities elsewhere in the system. For example, if the minimum outcome is adopted then someone treated on-island would not get access to the same drugs as someone being treated off-island. It could also have the unintended consequence of consultants actually referring patients off-island who could be treated on-island.
States Members might think I’m stretching the argument to prove a point: after all, surely two people with the same condition will either both be treated here, or both be sent off-island? But that isn’t the case. One person with cancer might have an underlying health condition that complicates their treatment, meaning they need to be sent to the UK for more specialist care. Another person, with the same cancer but without the other condition, can be treated here. The first person, who is sent off-island, will then be able to access certain drugs and treatments *for their cancer*, which the other person with the *same* cancer can’t access here. So the risk of inequity or injustice, if the Requete is adopted as written, is real.
Now, we could of course come here today and just argued that members reject the requete. However, that was not good enough. We understand the strength of feeling from some in the community who feel let down by the current policy and who want to see change.
And on that I should like to thank the group of campaigners, some of whom I met on Wednesday night who conducted themselves with great dignity and it was really useful to hear from them first hand. What was clear to me was that there were issues over process that needing investigating and I have committed to ensuring improvements are made. Not only that, if this amendment is passed and Option 1 is approved by the States, we have committed to work on the basis of permissive funding as far as we can in the interim and to provide a single point of contact, not involved in dealing with funding requests, who will help people through the process.
We also didn’t want to be seen to be hijacking the requete but to produce something that took into account the strength of feeling of some camapaigners. That is why we have included our preferred option of a review, whose terms have been published for all to see, but also an alternative that says, let’s just do it.
We have listened and In particular, understand the concern about the time it would take for a review to take place. We had committed to undertaking a review by Q3 of next year. This would have enabled the review to be undertaken by our Director of Public Health, with independent support from her counterpart in the Isle of Man. However, that would of course be too late for any funding to be found for the 2020 budget. So, instead we have said we will ensure the review is undertaken by Q2 next year, by bringing in external public health specialists. These are not generalist consultants from an accountancy firm or management consultancy. This is a highly complex area needing the necessary expertise.
We have also listened in terms of the review itself. We have therefore published the terms of the proposed review. We have also stated that it should be undertaken on the presumption that we will make available all drugs, treatments and medical devices approved by NICE Technology Appraisals.
We will ensure the review fully explains the benefits and implications of adopting all NICE TAs and how that can be achieved, and the policy letter arising from the review will give States Members the option to vote to do so. HSC can’t guarantee that the funding will be available – only that we will clearly make the financial and ethical case and ask for the necessary budget.
We believe that we have come up with an amendment that moves us forward and will help us navigate through a very complex area.
Complexity – if ever there was a word to sum up health and care it is complexity. It is really difficult to get across quite how complex the health and care system is now. It is more complex than 5 years ago and even more complex than 10 years ago. Every year, new drugs, new treatments and new methods are invented. We have to navigate this complexity and understand where these new inventions will actually make a meaningful difference. At the same time we have a population with increasing expectation and, thanks to the internet, greater knowledge of what is available out there.
Aneurin Bevan wasn’t wrong. We will always appear inadequate, we can’t meet everyone’s expectations. However, what we can do is ensure we meet the principles we set ourselves as far as possible and justify the decisions we make. That is why I ask that members support the amendment.
Summing up
This is an incredibly complex subject and reflects the difficult decisions that have to be made in health and care every day and will continue to have to be made. I wish we had all the money in the world and could satisfy everyone’s wants. But then what would be the consequence of that?
Anyone who’s watched the film Bruce Almighty will know what I’m talking about. Bruce, played by Jim Carrey hears voices in his head and then meets God, bear with me here. He explains that the voices are prayers to God, and that Bruce must deal with them. So, Bruce creates an e-mail system to receive prayers and respond to them. However, he then finds that the influx is far too great for him to handle, even with the use of his powers. So he sets the program to automatically answer “Yes” to every prayer, thinking this will make everyone happy. Needless to say it causes a heap of problems.
What it is important to do is listen, empathise and inform. Because we can’t provide what everyone wants we need to ensure that what we do can be justified. But we can only do that by reviewing what we do periodically to ensure that we are meeting people’s needs as best we can.
We have listened and taken on board what people have been saying. I believe we have done all we can to demonstrate that we take this issue seriously. We understand and empathise with the concerns and would like to ensure that we progress to a more liberal regime. Overall, we have made it possible for all those to coalesce around the need for a review that will enable us to make evidence-based decisions that support the key aims we have set for our health and care service.
I urge members to support this amendment.