Access to Insulin Pump Therapy (PE1404)
Our next item is consideration of a petition from Stephen Fyfe, on behalf of Diabetes UK, on access to insulin pump therapy. I am delighted to welcome the Minister for Public Health, Michael Matheson; Mark O’Donnell, head of the Government’s quality and planning division; and Tom Pilcher. I invite the minister to make some opening remarks, if he wishes to do so.
I thank the committee for inviting me along this morning. Our diabetes action plan, which was published in 2010, set out our vision for a world-class diabetes service. Our commitment to ensuring equitable access to potentially life-changing insulin pump therapy for people with type 1 diabetes reflects that ambition.
I welcome the announcement that the Government made on Friday about the investment of a further £3 million to purchase a further 660 insulin pumps. However, I find it regrettable that the committee, which has been working on the petition, was not made aware of that. I am sure that that will be corrected in future.
On the announcement that was made on Friday, first, I apologise if that information was not provided to the committee. I was not aware of that, but it should have happened. I will ensure that that type of thing does not happen again in the future on my part.
Although that is encouraging, I return to the point that in August 2010 the diabetes action plan was published; it is now 2013. In 2011, the Government wrote to the boards that had not shown as much progress and we are only now talking about the establishment of an improvement team. Can you, Mr Pilcher or Mr O’Donnell explain why improvements were not made after the letter that the Government sent to the boards? Why has no action been taken since then?
It would be wrong to say that no action has been taken since then. In the diabetes action plan, which was published in 2010, we set out a clear sense of direction with regard to increasing insulin pump provision; in October 2011, the cabinet secretary announced the target of providing 25 per cent of under-18s with an insulin pump and a tripling of the insulin pumps available to the over-18s; and in February 2012, we issued the chief executive’s letter to all boards directing them to take forward this particular commitment.
In that case, does the welcome investment that was announced last week mean that new targets will be set for the boards that have been meeting their targets?
No, we have not set a new target. We still have a commitment to increasing insulin pump provision for those who are over 18, so some of the pumps that will be bought can be used for that purpose. The investment is also to help to support the boards that are still moving towards the 25 per cent target for under-18s.
Are you confident that Scotland is on track to triple the availability of insulin pumps by 2015, notwithstanding the targets that have been missed in the past?
Based on the information that boards are providing us with, the trajectory indicates that we are on target to achieve that. We have also asked boards to report to us each month data on insulin pump provision so that we can identify any areas in which difficulties arise and address them as quickly as possible. In addition, we have increased the scope of the monitoring that we are undertaking so that we can address issues as quickly as possible, should they arise.
In a submission, Diabetes UK expressed concern that some boards—it was thinking particularly of NHS Highland and NHS Lanarkshire—had programmed a delay for meeting the target for under-18s. Diabetes UK was curious to know, as are we, whether the Government had approved that planned delay and accepted the revised target.
At no point was NHS Highland advised that a delay was acceptable to me. Throughout the process, we have encouraged NHS Highland to take as much action as necessary locally because the pumps that were provided in that area have been provided largely through services that NHS Greater Glasgow and Clyde provides at, I think, Yorkhill hospital.
You used the word “encouraged” and you have already indicated several ways in which the Government is supporting health boards to head towards achieving the target. People might wonder how you will monitor progress and some might ask how you will ensure that it happens. That leads to a far more general question about the relationship between the Government and health boards. Are you able to say with some confidence that you will ensure that the targets are achieved and will you monitor progress closely?
We are doing several things. As I mentioned, we now have boards reporting each month on the issue so that we can monitor the progress that they are making. If their progress does not fit with the trajectory that they have already given us for when they intend to achieve the target, we will be able to pursue that.
Good morning, minister. I for one welcome the formation of the improvement team, which is certainly progress on the matter.
It goes a significant way to fulfilling the demand. It is interesting that some of our boards have exceeded the target, as you will be aware. Unfortunately, one of our boards achieved the target, but a person became over 18 and moved into the adult service, which brought the figure back down again to under 25 per cent. There will be slight variations between boards.
We look forward to seeing the results of the improvement team’s investigation. Do you put the main differences in demand in NHS board areas down to refusals, for example?
It is not purely down to refusals, but they are one of the reasons that some boards have put forward for not yet achieving the targets. I am keen to explore what the barriers are—whether the issue is refusals or clinical confidence in the paediatric diabetes service—that need to be addressed and to see how we can address them. Refusals are among several barriers that boards have highlighted. The focus now is to address the barriers to try to get them removed. That will ensure that those who would benefit from an insulin pump in an area are given the right support and information to make an informed choice.
Good morning, minister, and welcome, panel. I will follow on from what my colleague Angus MacDonald asked. You said, minister, that the new team may well address the issue of lack of awareness. What work has been done to encourage patients to use, or to see the benefits of using, the pumps?
A patient information leaflet about insulin pumps has been provided—I think that 4,000-plus copies were produced. I understand that the leaflet was targeted largely at diabetes services, so patients who use the services may be able to get that information.
In recognising that perhaps not enough has been done, what do you foresee as being the new team’s role?
That there is not enough being done might be the case in some areas, but it is only one factor. If the target has not been achieved in a board area, it will not be because of only one factor; a combination of factors such as lack of public awareness, patients refusing the pumps because of body-image issues or clinical confidence about using them could be involved. That is why each board has been asked to review its local action plan for insulin pump provision and to identify barriers to use.
Are you aware of any NHS boards that have waiting lists of people who wish to use insulin pumps?
I am not sure whether there are waiting lists, although I know that NHS Greater Glasgow and Clyde, for example, has a limit of four under-18s a week going on to insulin pumps in order to ensure that it can clinically manage the process. I can check: if there are waiting lists, we can come back to you with details.
I want to ask a question about the role of schools. Will I continue, deputy convener?
You can come back to that.
I have no criticism of you at all on this issue, minister—save that I think that you have been mighty understanding of all the health boards. From our discussion of the matter, it seems to me that the position can be characterised as the Government’s having had to return to the issue repeatedly to intervene in health boards that have not been making the sustained progress that the Government, Parliament and everybody has required of them. The health board management teams and the chief executive officers are paid relative fortunes. They are not underpaid and are supposed to be top-class management who are capable of executing a brief and implementing a policy.
I suppose that there is the option of issuing punishment exercises to some of our chief executives and chairs. I recognise that some boards have been very ambitious and have taken up a challenge that was set to stretch them in order to move the target forward sufficiently.
What penalties apply to chairs and chief executives when outcomes are not met?
As far as governance is concerned, we set the national policy, with which we expect the boards to proceed. We hold them to account through our annual reviews, which allow us to pursue with them particular issues on which we feel that their performance has not been adequate. The Scottish Government also has a performance management team that can pursue specific issues on which there has been lack of progress, so there is a variety of ways in which we can involve ourselves with boards that we feel are not performing adequately.
Have you identified among the boards differences in the time that is taken to train young people to use insulin pumps? I have heard that there may be some risk aversion when it comes to training children to use the pumps. I know of someone who obtained a pump privately somewhere down south, and the child was trained how to use it in a matter of hours.
I recognise that there are slight variations in clinical attitudes to use of insulin pumps; some clinicians are more enthusiastic than others. Our clinical lead in the area—Professor John McKnight—highlighted that apprehensiveness can often be overcome once a clinician has gone through the process of using an insulin pump with someone and explained the benefits. There will be differences in the time that is taken to train patients, and the time that it takes patients to become comfortable using a pump may vary. My view is that the time that is taken should be what is suitable for the patient.
There are three suppliers. As part of the national procurement framework, which dictates the supplier base for pumps to NHS Scotland, there are arrangements for those companies to provide support to the boards in the form of training and additional support to patients.
Are there differences among boards in taking up that offer?
It is up to boards to determine how they take up that support from the companies, and whether to take up more or less support, depending on what they see as being fit for their local level.
It depends whether the boards are using insulin pumps that they have previous experience of and whether they require that type of support.
I want to ask about the boards that are not achieving the target—in particular, NHS Highland and NHS Lanarkshire. The letter dated 9 May that the committee received from Mr Pilcher indicates that after the lead clinician on diabetes and the diabetes adviser visited the boards, the Government had a better understanding of
As I said, different boards have had different challenges. In some boards, there has been a combination of challenges. Neither NHS Highland nor NHS Lanarkshire had a paediatric diabetes service; they now have that service in place, which has resulted in improvement. NHS Lanarkshire was, largely, using NHS Greater Glasgow and Clyde’s paediatric diabetes services and a high level of the population in Lanarkshire has type 1 diabetes. It is already starting to make progress on improving the service. The work that we did with health boards to identify problems allowed them to make progress in how they provide and design services.
Some boards have attained and exceeded the 25 per cent target that the Government has set, but how quickly will all boards, particularly NHS Highland and NHS Lanarkshire, get up to that target, given the low starting point for use of insulin pumps?
We asked each board to give us a trajectory for when they now expect to achieve the target, and the vast majority of them anticipate achieving it by March next year. NHS Highland, for example, is projecting that it should meet the under-18 target by March next year. NHS Lanarkshire has indicated that that could take it longer, and that it might reach the target in March 2015. We are working with that board to review its local action plan to see whether further measures could be taken to draw in that timeframe further. I would not like to say whether such measures will draw it in to any particular date; that work will need to be undertaken by the improvement team. Overall, all boards except NHS Lanarkshire are saying that they should attain the under-18 target by March next year.
I am surprised that NHS Highland has indicated that it can achieve the under-18 target by March 2014, from starting at a lower base rate, whereas NHS Lanarkshire, which started slightly higher—not much higher—is saying that it cannot do so until March 2015. Have you identified, or would you identify, additional resources to go to NHS Lanarkshire to assist it to reach that target more quickly?
That is the point of the improvement team. It will work with boards to review their local action plans to see what further measures might be necessary to bring forward timeframes. The type of resource that will be necessary will depend on what is required to achieve that. Throughout the process, we have repeatedly told boards that we will, as part of our commitment, work with them to establish what additional resource might be necessary to assist them to achieve the target. We will have that dialogue with the boards and we will identify whether measures can be pursued to help them achieve the target earlier.
You have referred to local decisions being made by clinicians, who have said that they are apprehensive about using insulin pumps—although those are not quite your words. Have there been discussions within the health boards or NHS Scotland regarding the clinical standards that are being introduced, so that insulin pumps would be the first choice, rather than having local clinicians deciding on whether insulin pumps are the best way forward?
The issue around clinical confidence about insulin pumps is that they will still be seen by some people as being relatively new technology. One way of overcoming the barriers is for people to gain experience in use of the pumps.
In 2012, the Government announced an extra £2.5 million to purchase additional insulin pumps. It lately announced an additional £3 million to buy another 660 insulin pumps. Diabetes UK Scotland has indicated that there are about 356 pumps available for distribution. Are those pumps additional to the 1,218 that have been identified through Government funding allocations?
We still hold the insulin pumps that were previously ordered. The most recent 660 pumps figure is based on the boards’ feedback on what they require, and we are providing the funding to allow that to happen. Our total spend on them is £5.5 million.
I assume from that that Highland NHS Board and Lanarkshire NHS Board have been allocated more pumps so that they can achieve their targets.
Let me put it this way: provision of pumps is not a barrier to getting on to pumps patients for whom that is clinically appropriate. We have provided significant resource for purchase of pumps. No health board has said that it is unable to get a patient on to a pump because it does not have the money to provide one. There are more than enough pumps available to achieve the target, but we need to ensure that they are being provided by boards.
Anne McTaggart has a final question.
Is that “question” or “questions”? I have a few quick ones.
Yours is the last question.
When does the improvement team aim to hit the ground running?
This month.
What is the national position on how families of patients who have managed to get pumps can access pump consumables? We have taken evidence that parents are being told that they can have only one month’s supply or three months’ supply, and that they will need to fund the batteries. In addition, although the devices are owned by the health board, families must incur the cost of insuring the pumps.
Part of our funding arrangement for purchase of pumps is that we also provide a year’s supply of consumables to the board. Tom Pilcher may be able to give more information on what happens in different boards after that period to address consumables.
As the minister said, we have bought the consumables for the pumps, so that is not a barrier. As far as I am aware, a pump has something like a five-year warranty from the supplier, which goes along with the purchase.
This will be the very last question.
Diabetes UK Scotland points to problems that have been experienced by NHS Lanarkshire in respect of schools not being insured to help pupils to manage their insulin pumps. It cites a number of statutory duties on education authorities that would oblige them to be involved in care of the pupils while they are at school. What is your position on that?
As I have said, boards have cited various barriers to provision of pumps. That is why, for example, the school issue that has been highlighted by NHS Lanarkshire is one that we must bottom out so that we can establish the full extent of the matter. I am not aware that that is a problem in other areas, so the question must be asked why it appears to be a problem there.
Members have finished their questioning, so now the committee must decide what action it wishes to take on the petition. I am minded to keep it open.
I understand why you would want to keep it open, convener, but looking at the original petition I am not sure that we have not actually fulfilled its terms. If we are to keep it open, I would be interested in finding out what milestone we would seek to monitor progress against.
On that basis, I suggest that we keep the petition open and come back to it in six months.
I am minded to support such a move if the minister will provide us with up-to-date monitoring information on the introduction of insulin pumps to give us an indication of how health boards are achieving the targets—and whether NHS Highland and NHS Lanarkshire, in particular, are meeting the Government’s monthly targets.
It might be helpful to the committee to point out that a report that is provided every four months to the Scottish diabetes group, which is implementing the action plan, contains information on insulin pumps. I am more than happy to provide some of that information to the committee.
When is the next four-monthly report due?
It is due in August, but if it would be useful I am more than happy to send the committee information on progress.
I would be wholly concerned if we did not keep the petition open because I am not sure whether we have addressed the point about
Given that the four-monthly report to the Scottish diabetes group will be made available in August, I suggest that we keep the petition open and come back to it in September. Are we agreed?
I thank Mr Pilcher, Mr O’Donnell and, of course, the minister for their courtesy in attending this morning, and for the information that they have provided. However, I apply the stricture that the committee should be advised of any information that is supplied to the press on this issue, instead of our being left in the dark, as happened last week.
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