Access to Insulin Pump Therapy (PE1404)
Agenda item 1 is consideration of a current petition. PE1404, by Stephen Fyfe, on behalf of Diabetes UK Scotland, is on access to insulin pump therapy. Members have a note by the clerk, which is paper 1, and the submissions.
Tha mi airson taing a thoirt don chomataidh airson an cothrom seo fianais shoilleir a thoirt seachad air CSII anns na h-Eileanan Siar agus gu nàiseanta. Bu chòir dhuibh a bhith air ur moladh airson an t-adhartas a tha sibh air a dhèanamh mar chomataidh agus am buaidh a tha sibh air toirt air toirt seachad CSII air feadh Alba.
Thank you, Mr Stewart. I have some questions to put to Dr Ward, and my colleagues will then follow up with further questions.
Those children are managed through a networking arrangement that we have with NHS Greater Glasgow and Clyde, which provides us with specialist paediatric diabetic medical, nursing and dietetic services working alongside our local teams. The children with diabetes were identified over a period and through their engagement with that clinical service. However, I am afraid that I do not have information on how long they have had diabetes.
As you will know, the committee has taken a great interest in insulin pump provision. All committee members are concerned about the postcode lottery, whereby some health boards are achieving the targets while others are very far behind. As you know, there are now just a couple of weeks before the target must be achieved. I know that you cannot speak for other health boards, but why is there the problem that, despite the policy that has been laid down by the Scottish Government, those who live in one part of Scotland get the service but those who live in another do not?
As you said, I am not competent to answer that question on behalf of other health boards. However, I can say that the challenges and constraints of delivering high-quality healthcare in places such as the Western Isles often necessitate our working in partnership with larger boards. For various conditions, we have strong networking arrangements with NHS Highland, NHS Greater Glasgow and Clyde and other boards. We are very determined that the people of the Western Isles should not be disadvantaged by the fact that they live here.
Diabetes UK makes the point that those health boards that are not achieving the targets use the common line that there is not a demand from patients, whereas those boards that are achieving the targets never mention that as an issue. Frankly, it seems to me that some boards are using that as an excuse. What is your experience in the Western Isles?
As with most things, there is probably a middle ground. It has been agreed and established through the Scottish intercollegiate guidelines network’s guidelines that CSII treatment can confer a modest benefit in terms of glycaemic control. CSII is of particular value to people who, in trying to achieve close glycaemic control—in other words, good control of their blood glucose—experience hypoglycaemia or low blood sugars. Offering and making available insulin pump treatment has a clear benefit for those groups of people.
Some health boards have told me that they are concerned about the cost of insulin pumps, which is around £2,000—although it varies—but my concern is that not investing in them can sometimes have a cost. You will know that diabetes is the main cause of blindness in people of working age and that half the non-traumatic leg amputations that are carried out are a result of diabetes. The cost to health boards of hospital admissions and serious operations in hospital is much greater than the cost of pumps. Moreover, I understand that there is quite a considerable stockpile of insulin pumps that the Government has invested in.
The funding has come in the form of consumables—devices and, I believe, the insulin for the first year.
That is very positive—thank you for that.
Good afternoon. I would like to ask about the target of delivering pumps to 25 per cent of young people with type 1 diabetes by the end of this month. How much consultation was there with medical professionals on that? Were you consulted on how realistic the target was? As the convener said, many health boards will miss it.
I was not personally consulted, but the Scottish Government has provided detail on the consultation, and I believe that it consulted managed clinical networks on how many pumps would be needed, as well as consulting a number of senior regional planners or board planners on the matter.
You said that the problem is not funding but training. When the target was set, was enough consideration given to what would be required of the health boards to support the distribution of pumps?
It is difficult. There is a lot of talk at the moment about the destabilising effect that targets can have but, when a target comes into play, it undoubtedly results in a focusing of minds. Although we in NHS Western Isles will not meet the 2013 target by the end of this month, we will meet and are likely to exceed it by the end of April. On that basis, if we were looking just at that target, I would defend our position quite strongly. The subsequent target of increasing the provision of insulin pumps, particularly to adults who need CSII, will be an on-going challenge but one that we will work very hard with our partners in Glasgow to address.
My final question is born out of ignorance; it relates to the replacement or withdrawal of the pumps. Will people continue to use the pumps for ever? For example, might children come off them at some point? How often will we have to replace adults’ pumps?
As things stand, people with type 1 diabetes will not stop having that condition. There is research on pancreatic replacements and various other things going on but, at the moment, those people will need insulin. I would expect the question of how we deliver that insulin to be part of a continuing dialogue between the person involved and their specialist adviser, whether he or she is a consultant or a nurse, about what suits the person best.
The documentation that we received from you states that you need only five young people in order to meet the target on delivering pumps. The convener spoke about postcode lotteries. Given that you have already met your target, what would happen if I lived in the Western Isles, or moved to the Western Isles, with one, two or three children with the condition?
If a child is identified as suitable for an insulin pump, we will facilitate their access to that. We are likely to start six children on the treatment next month, rather than five. We also indicated to the Scottish Government, which is procuring the pumps for us, that we would aim to utilise up to 10 pumps for children this year.
I want to find out whether there will be a decrease in the emphasis on new people who require that treatment after you meet your targets.
No, absolutely not. Our emphasis is to give people the most appropriate treatment and if that is a pump, then it is a pump.
You mentioned the problem of training. What do you think would fix that issue?
We have reorganised our diabetes medical and nursing service provision. That process is on-going and we want to strengthen that team further next year. From my point of view, our system for providing that training is already fixed as a result of our network with NHS Greater Glasgow and Clyde, which provides training and on-going support for people. That is already in place.
Are you saying that that is up and running, the problem has been rectified and there are no further concerns in relation to training?
The staff training is already in place, especially in relation to introducing pumps for children. There is a lot more that we could do in relation to on-going education for patients with diabetes. In particular, we could have systems to deliver training that are more suitable for people living in places such as the Western Isles than gathering everyone together for a week.
I am paraphrasing, but you said earlier that there did not appear to be difficulty with the funding. If there was no difficulty with the funding, what was preventing the training from going on?
We had to reorganise the team, define the team and then schedule the training with our Glasgow colleagues in order for that to be delivered in advance of us offering to start children on pumps. While we were planning when the training would be delivered, we were also identifying appropriate children who would benefit from the treatment. I am not sure whether I am making myself clear.
How strong is that team now? If one member left, would there be children waiting for a long time?
No, because we are aiming to build resilience into the team. Small systems are often very person dependent so, as you say, if one person stopped being available, that would have an effect. We are moving away from that.
In what ways have you built in resilience?
We will have a broader base, rather than a small number of individuals. We are also upskilling the members of our wider clinical teams who provide diabetes care, for instance practice nurses, other community nurses and general practitioners, so that they understand what CSII involves. We have a new consultant physician starting in six weeks who has a special interest in diabetes, which will add a lot of local resilience. We also have the day-to-day contact with our Glasgow colleagues, who provide an in-reach service and videoconferencing, telephone and email support. It is a blend of support for children and their families.
I want to tease out the context of the target of 25 per cent of children and young people. For what percentage of children and young people are insulin pumps clinically appropriate?
That is a difficult question to answer. SIGN guidelines might say between 9 and 14 per cent. The technology assessment talks about clear criteria, as I mentioned earlier, such as people with recurrent hypoglycaemia—low blood sugar—or people who, despite all efforts, cannot achieve glycaemic control. How we define “all efforts” is a matter of clinical interpretation.
According to the responses that we have received from health boards, particularly those that have set up paediatric services from scratch, as you are doing, health boards are coming up against some resistance to the use of insulin pumps among children and young people. For children and, in particular, young people, issues such as body image and when their exams are come into play. Perhaps Mr Stewart could comment on that.
I appreciate that the young people have all sorts of challenges. They do not want to be different from anyone else. However, again and again I have read evidence from across the world in which children say that their lives have been transformed by CSII. One mother said, “My wee boy was given back to me.” It is excellent.
Perhaps, in particular for those in the audience who are not experts in this area, you could explain in one sentence about the DAFNE training system.
Okay. Basically, DAFNE is a form of dietary counting: you look at your plate and you count the carbohydrate content. Based on the totality of that content, you apply a specific dose of insulin to overtake that absorption. There are different types of structured education. Here in the Western Isles, the stated policy is carbohydrate counting. However, having done carbohydrate counting, you cannot go on to adult CSII in Glasgow because Glasgow says that you have to do DAFNE first. You cannot get on to DAFNE because 243 people are before you on the list for Glasgow. It is a David and Goliath situation—Eileanan Siar is David and Glasgow is Goliath.
May I bring you back to my question?
Oh yes, the children.
That was a long sentence.
Sorry.
Basically, I am trying to establish the criticality of these targets being met. I am trying to establish how high this provision is on the Western Isles diabetic service’s priority list. We seem to be getting some conflicting messages. On the one hand, you would like to see all children and young people moving on to insulin pumps; on the other hand, we are being presented with evidence that suggests that that is only clinically appropriate for a certain percentage of children and young people.
No.
No, you are not. Can I get some idea as to where insulin pumps fit into your priority list?
Before I respond to that question, I go back to the point about the target that you raised in your previous question. Our aim should be to make insulin pumps available to those for whom they are suitable. That availability might or might not result in their staying on the pump, but the issue is one of access.
I take the point that you cannot speak on behalf of other health boards, but a concern that emerged in our evidence sessions related to the suggestion that boards did not agree with the science and were saying, “We don’t really agree with insulin pumps; we don’t think that they are the way forward.” My view is that the National Institute of Health and Clinical Excellence has laid down what should be happening and the Scottish Government has set what I think is a very good target, but health boards do not seem to want to go along with that. Perhaps I am being naive, but I think that that way forward is the correct one. What is your perspective on the issue?
Professionally, I am not a diabetologist. There is a place for insulin pumps but prioritising them above everything else creates challenges in the system. My reading of the guidance is that a lot has been left to the clinical interpretation of suitability and whether people have done everything that they should have done. Moreover, we are not talking about huge numbers here; the cohort of the population with diabetes who have recurrent hypoglycaemia is actually very small.
Perhaps the wider question to which Diabetes UK has again given very good consideration relates to undiagnosed diabetes; indeed, there will be people in the gallery today who are diabetic but do not know about it. I was very interested in the high-risk screening approach that would focus on those who were overweight, were over 45 and had a family history of the condition. Some health boards have taken an informal approach to that but, as you know, there is no Scotland-wide policy on it. How do we detect the missing thousands in Scotland who are diabetic but do not know it?
Screening happens in many different places, but mostly in primary care. We should also bear it in mind that pretty much everyone visits their GP on a three-year cycle, so there is an audience that can be reached.
Do you share my view that opticians play a vital role?
Yes, and not just in detecting diabetes. Opticians can highlight all sorts of clinical conditions and it is good to know that they can now refer directly into the system.
I have a couple of brief questions on Government engagement. The Cabinet Secretary for Health and Wellbeing meets the health boards annually for board reviews. Was the diabetes action plan specifically raised by ministers at the last health board review that took place?
As far as I recollect, it was not raised at our most recent annual review.
On Government engagement with the diabetes action plan, I notice that in 2011, Nicola Sturgeon said that she would write to all health boards to ask what further action they were taking. Did the board receive a letter from Nicola Sturgeon at that time?
I cannot say whether it was from Nicola Sturgeon but we have certainly received regular correspondence from the Scottish Government health department.
Right, so there is sustained engagement with the Government about the diabetes action plan and the board’s progress towards achieving the performance levels within it.
That is correct.
My understanding is that when a health board receives a chief executive letter, the board has to jump—metaphorically—to achieve that target. Is that a reasonable summary of the way in which the Government’s action plan enforces behaviour change?
The CELs certainly carry a powerful message.
The petitioner’s letter says that one of the reasons for the target was because Scotland was at the bottom of the European league table. I am not sure that that is the right motivation for us to do what we are doing.
I do not have any detailed knowledge of the pan-European approach to CSII. You would have to take into account the huge differences between the healthcare systems that are in place and the different approaches to management of diabetes. In many cases, patients could be sent direct to specialists as opposed to going through generalist services. I am more interested in outcomes than processes, to be honest.
On that basis, if you had a free hand, what two things would you do to push us up the league table even further?
With respect to insulin pump provision or diabetes?
Insulin pump provision.
From the perspective of the Western Isles?
Yes.
I would look to understand what people want by taking a person-centred approach. Diabetes UK has done a fantastic job of lobbying the Parliament and others on this subject. Obviously Diabetes UK represents some diabetics but there is a wider local population whose voice I want to be heard.
To go back to what you said about what we need to achieve, I have recently spoken to the insulin pump users group and, as you might expect, they were evangelistic about insulin pumps. I talked to a number of parents who said that they feel a lot happier about their adolescent children going out on a Friday and Saturday evening when they have an insulin pump. Hypo attacks are very dangerous and have caused a number of deaths.
That is an important message to hear. I am sure that as we expose more people and their families here to this intervention we will understand more closely what that means for them.
I am conscious that we are short of time, but I did not quite complete one question.
I would be disappointed if we did not exceed the target. In taking that step we have to further refine our network with Glasgow. Mr Stewart’s description of the constraints contains some accurate points, so we need sort out access to the training and clarity on determining which people are most appropriate. On adult pump provision for this year, we have indicated to the Scottish Government’s health department that we aim to have five pumps made available to adults. If we can continue that level of provision we will meet and exceed the target.
I thank Western Isles NHS Board for its structured education on carbohydrate counting. I believe that that should be available to all diabetics—not just children, but adults. I believe that education is the way forward and that investment in education will reduce the long-term costs to the health service. Diabetic healthcare generally, including CSII, should be considered on a consensual, non-partisan, cross-party, trans-parliamentary basis over a 20-year period. Every party subscribes to the idea, and in the medium to long term the health service in Scotland will accrue significant savings by front loading the investment.
I have a couple of points. One is for Dr Ward. I picked up earlier, possibly wrongly, your indication that insulin pumps and insulin were available from the Scottish Government for one year. Given the targets that we are trying to achieve—as the convener indicated, we are trying to triple insulin pump use—has the health board identified any issues with the on-going supply of insulin beyond one year, or is additional funding being made available from the Scottish Government to ensure that insulin pumps are continually supplied and insulin is available for all patients?
There is provision within our prescribing budget for consumables beyond the first year.
That is fine.
Yes, the training is for children and their families.
The other issue is the 25 per cent target. The convener referred to tripling that target. In its response to the committee, NHS Lothian surprisingly said that the 25 per cent target was deemed to be very high risk. Do you accept NHS Lothian’s assessment, or do you think that the target falls short of what we should be trying to achieve on the uptake of insulin pump use?
I would have to infer what was meant by “very high risk” to answer that. NHS Lothian might have meant that it would have to divert resources from other initiatives to support people with diabetes—but I do not know.
What would those resources be? If they are getting insulin pumps from the Scottish Government and are being supplied with insulin, what are the other issues facing health boards in relation to delivery?
The resource would be staff time—dietetic time and specialist nursing time.
If I may ask another question, convener—I have waited this long, so I may as well get my questions in—is there sufficient funding and are enough trainers available for NHS Western Isles to deliver the training that is required to ensure that there is specialist knowledge not only in the primary care sector but in the wider community?
NHS Western Isles has a long record of investing in training for members of staff in primary healthcare teams from the Butt to Barra. Every practice in the Western Isles has a member of staff who has done the Bradford diabetes diploma, and there is an on-going process of training through our medical consultants network, which covers all aspects of diabetes provision.
I commend Dr Ward for that response and for the work that has been done by NHS Western Isles. I look forward to every health board in Scotland following that lead.
We are out of time, I am afraid. Our next step is to decide how to deal with the petition. I think that all members agree that the issue with which it deals is important, and it was interesting to get first-hand information from Dr Ward and Mr Stewart.
I think that we received seven replies to our request for information. How many health boards have not replied to us?
For the current process, we have responses from every health board.
We will continue the petition, write to the Scottish Government and invite Alex Neil to come to a future committee meeting—regrettably, that will probably be in Edinburgh, not Stornoway, but you are all welcome to sit in the public gallery at that meeting.
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