Our next item of business is evidence from Anne McTaggart MSP on the financial memorandum accompanying her member’s bill. Ms McTaggart is joined today by Diane Barr from the non-Government bills unit. I welcome our witnesses to the meeting and invite Ms McTaggart to make a short opening statement.
Thank you, convener. Good morning—it is still morning, but only just. I thank all members of the committee for this opportunity to provide evidence on the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill and for allowing me to submit supplementary evidence over the past few weeks.
The committee’s focus is on the financial aspects of the bill, but I will take a few moments to explain why the bill is necessary and why I introduced it. There are currently 571 people in Scotland waiting for an organ transplant. Demand for organs far outweighs the number of organs being donated and, as a result, three people who are in need of an organ transplant die each day in the UK, which is far too many. Many more people face years of ill health, often with no guarantee of there being a suitable donor. That needs to change. I believe that a soft opt-out system of organ donation is the solution.
Calls for an opt-out system are not new. Members of this Parliament, and indeed members of this committee, have considered the issue many times over the years. I commend the work done by MSPs from all parties to highlight this important matter. Their work has helped to inform the bill and, more important, has given hope to those awaiting a transplant and their families. This is not a party-political issue; it is about saving lives.
The bill would introduce a soft opt-out system of organ donation in Scotland. According to international evidence, a soft opt-out system can lead to an increase in organ donations of between 25 and 30 per cent. The financial memorandum focuses on the costs of implementing the bill, and much of the evidence that the committee has received also focuses on costs. However, we should not lose sight of the potential gains. Needing an organ does not have boundaries; it can happen to anyone. If you have ever spoken to someone who has received an organ donation, you will know how transformational it can be. It is not too strong to say that organ donation can be a matter of life and death. The Scottish Government and I share the same ambition: more donors, more transplants and more lives saved. That ambition will not be realised without investment and change.
The financial memorandum provides a best estimate of the expected costs. In my letter to the committee I have provided a revised estimate of £6.8 million, with details of each area of spend. I believe that that is a realistic and accurate assessment of the costs of implementing the bill. The written evidence received by the committee suggests that most people agree with me.
Some of the best-performing countries in the world for donation and transplant rates have a soft opt-out system. Support is growing: Wales has recently introduced a soft opt-out system, and the Northern Ireland Assembly has recently agreed stage 1 of an opt-out bill. Scotland has led the way on many health issues, so we should lead on organ donation, too. Let us not limit our ambition for Scotland. Let us lead the charge and not wait and wait. Do not put on hold the lives of those who are waiting for an organ donation.
Thank you for listening. I am happy to answer members’ questions to help us make this bill possible.
Thank you very much. This is your first time at the Finance Committee—as you probably know, I will ask some opening questions and then colleagues around the table will come in.
The first question comes from the Scottish Government’s submission; as you will understand, a number of questions arise from that submission because it was the most detailed that we received. You are right to say that many of those who submitted evidence more or less said that there would be no real impact, so we will focus on the organisation that said that it would, which is the Scottish Government.
You said in your opening statement that what you want—I think that we would all want this—if this legislation goes through is more donors and transplantations and to reduce the number of people waiting, in particular those whose lives are threatened. Paragraph 4 of the Scottish Government’s submission states:
“The bill does not provide an estimate for the number of additional donors, nor transplants, that the legislation would lead to.”
What is your response to that? Has any work been done to see what the impact would be?
We thank the Scottish Government, because it was able to give some of the detailed information and costings that we were not able to provide. Given that we are unable to put a cost on people’s lives, the Scottish Government provided its best estimate, and we—myself, Diane Barr and the bill team—looked at that as a best estimate. We took a lot from the actual costs that were incurred by the Welsh Government through the soft opt-out legislation and used that in our bill; obviously, we adapted the information because we have a larger population.
The cost of additional transplant operations arising as a result of the bill is far more difficult to quantify. Indeed, the Scottish Government acknowledges in its submission that despite NHS National Services Division having
“undertaken a great deal of work to forecast the potential costs of additional transplants arising out of the Scottish Government’s Donation and Transplantation Plan for Scotland, over the period 2020”,
it was
“not in a position to provide any robust estimate of financial costs/savings to the NHS and to Scotland”
as a result of the possible 25 to 30 per cent increase in organ donation from the implementation of a soft opt-out system. However, NHS National Services Division’s written evidence states that it would expect to manage any increase in activity
“within the existing financial portfolio.”
On costs, you have almost answered my next question about the Government saying that
“it is impossible to accurately assess the costs of the proposed measures from the limited information contained within the Financial Memorandum.”
Individual members who introduce bills with the best intentions do not always have access to all the information that they should have when putting bills together. The Parliament should consider that issue.
Regarding the documents that are in front of us, I return to the question. One of the things that I wanted to know was how many additional donors and transplants there would be as a result of the bill. In other words, from the evidence from Wales and elsewhere, how many more organs are likely to be available for transplant as a result of your proposals?
I apologise for not covering that initially. We have the figures. It is expected that there will be, as I said, a 25 to 30 per cent increase, which could mean—I think that this is the figure you were looking for—an additional 24 to 29 donors a year and an additional 75 to 90 operations a year. Obviously, how many organs are removed from each person will equate to how many operations can go ahead.
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Thank you—that is very helpful. The role of the authorised investigating person has also been raised. People have asked whether that role really exists and how much it would cost. What training would be required? What kind of people would apply? Can you give us a wee summary of what you think the job would entail and how much it would cost? Obviously, it is a new position.
With the authorised investigating person, you will see from the Scottish Government’s financial estimate that it has created a whole new tier. We have not done that because, quite simply, we do not see a need to create a whole new mass of people. There are people working in that role currently—they are called senior nurses in organ donation, or SNODs. Those people have the skills and are doing that job. The bill aims to enhance and extend their current role.
We do not recognise the Scottish Government’s figure. I see the option that the Government has selected as the least preferred and most expensive option—in our trade, we would describe it as the Rolls-Royce model. Creating a new role is not a requirement of the bill, so the costs of doing that are not missing from the financial memorandum; we do not reckon that they should be there.
I have one further question. I do not want you to think that we are focusing only on what the Scottish Government said. NHS Lothian said in its submission that, as a service provider, it will be disproportionately impacted by the bill and that there is
“uncertainty over the impact on levels of transplantation activity to be undertaken.”
I think that you have touched on that latter point, but I wonder whether you have done any work on how individual health boards—specifically NHS Lothian—might be affected, as opposed to the national picture.
The costs will be met from the NHS board budgets. Paragraph 25 of the financial memorandum confirms that most of the additional costs are
“expected to fall on the Scottish Government’s health budget”
and that the Government’s contribution to NHS Blood and Transplant should not change. That is similar to the Welsh Government’s approach, and I refer the committee to the confirmation in the Scottish Government’s submission that NHS National Services Division
“has undertaken detailed consultation with NHS Boards to ensure resources will be made available to support these additional costs”
related to meeting the Scottish Government’s targets.
Do you want to add anything, Diane?
The evidence from NHS National Services Division confirmed that additional costs related to the implementation of the bill would be met. It said:
“If there were to be an increase in transplantation activity as a result of the Bill, National Services Division would expect to manage this within the existing financial portfolio.”
It does not look as though there would be additional costs that could not be met.
Thank you. The deputy convener is next.
It is probably best to continue with that theme. I might come back to NHS Lothian, but NHS Western Isles in particular seemed to feel, in its submission, that it would be disadvantaged. Obviously, it is one of the smaller boards and does not carry out any transplants itself. It seems to get recharged, as I understand it, by other health boards that do the work. How do you see NHS Western Isles being affected?
It is about trying to offset some of the savings. I am not sure that NHS Western Isles would not benefit, in a sense. We are signed up to UK-wide organ transplantation delivery, so the costs would be met throughout. Not all the organs that are transplanted into people—perhaps from the Western Isles or within Scotland—necessarily come from deceased persons in Scotland; they are UK-wide.
So there would be a saving. As I understand it, one of the main savings would be on dialysis, but in other cases there are not such obvious savings if somebody gets a transplant.
That is right. You are right to mention dialysis. Currently, 571 people in Scotland are awaiting a transplant, and 425 of those people—or 74 per cent—are waiting for a kidney transplant. There is potential for savings from the majority of the transplant operations, and the Western Isles will be part of that.
I can talk most about kidney transplants, if you want more information about how much that would save. The greatest number of the people who are waiting are waiting for kidneys, so that is where a lot of the money is perhaps offset, from kidney dialysis, in the on-going cost of a person not getting a transplant.
Overall, I agree with your opening comments and I am very sympathetic to the bill. However, the committee must look fairly carefully at costs and potential savings. Annex B of the Government’s submission was quite blunt. At one point, it said:
“We are required, however, to make the point that—with the exception of kidney transplants—patients who do not receive a transplant will die”
and will therefore not incur on-going costs. Without going into all the detail, do you accept that if some patients get a transplant, that will mean that there is a cost? They will have a quality of life that they would not have had before, but there will be on-going costs that they would not have had either.
I can give you some of the figures on the on-going costs. The cost benefit of a kidney transplantation compared with dialysis is £24,100 a year. Over a 10-year period, that is—members of the Finance Committee are good at maths—£241,000. For example, the 153 transplants that were performed in Scotland in 2014-15 represent a cost saving of approximately £3.7 million, or £37 million over a 10-year period.
That is specifically for kidneys?
Yes.
But it is the exception. For the others, if somebody gets a transplant—looking just at the NHS and leaving aside quality of life and all the rest of it—would it mean a higher on-going cost for the NHS?
Yes, and the aim is to offset that with the kidney cost savings. We are talking about only 26 per cent.
NHS Lothian gave us quite a full range of comments. One of its points was that the bill does not highlight explicitly the additional costs of organ retrieval and transportation. Do you consider that a major point, or is it quite minor?
I am sorry—
NHS Lothian says towards the end of its submission that the bill does not explicitly highlight the additional costs of organ retrieval and transportation. Do you accept that, or is it a minor point?
If additional investment in retrieval services is required, that is a matter for the Scottish Government to decide.
Okay.
How the savings are redistributed within the NHS would also be for the Scottish Government, and for the NHS, to determine. I do not think that I would be able to answer that within the realms of the bill.
Is it your argument that, although we are getting feedback from the individual boards, they are unable to look at the whole picture, whereas you are looking at the whole picture in the bill? Is that the logic?
Yes. I do not foresee many of the health boards writing to tell you that they will be able to gladly splash cash around and are awash with cash. I do not think that many health boards would write to you in such terms. I think that the boards have given what they reckon. However, you are exactly right. I have looked at the overall picture for Scotland.
Okay; I accept that.
My final point is on NHS Lothian as a service provider of both transplantation and organ retrieval. I think that it does some of the stuff nationally. NHS Lothian will be disproportionately impacted by the bill. Although it might be disproportionately impacted, will the overall picture be more neutral?
Again, I think that we are going over the same question. I see it as an overall broader picture. If the person in the Western Isles or the person in Lothian needed the transplant, we would need to look at the picture Scotland-wide, as opposed to each individual—
Health board. Okay. Thanks very much.
Quite a lot of stakeholders seem to agree with your financial memorandum but, as has been touched on, there is a bit of a difference with the Scottish Government. As a first impression, the difference looks massive but that is over a 10-year period. There is quite a big difference in percentage terms, but it is not so big in absolute terms year on year. You say that the figure will be £680,000 a year, and the Government says that it will be £2.2 million a year over a 10-year period.
Two differences are cited. One difference, which has been mentioned, concerns the authorised investigating person. The Scottish Government has estimated a cost for that of £10.9 million over a 10-year period. You described that as the Rolls-Royce option and said that you think that other options would do. You referred to people called SNODs, and I guess that you have assumed the cost for that option would be nil. What are the cost implications of the SNOD option compared with the AIP option?
I included that under training. I said that the AIP option would be the Rolls-Royce model with a different team. The people who do the job now are the SNODs, and we have estimated the bill for enhanced training at £0.5 million.
The Scottish Government reckons that 18 AIPs would be needed. Your view is that existing staff could be used, although they would have to be trained, which would have a cost implication. However, you do not think that new staff would be required; you think that the work could be done with existing people.
Not only do I not think that new staff would be required, but if we brought in an extra layer of staff, that would create a different system from what has been operating elsewhere. I am not sure why we would bring in an additional team. The Welsh Government has not done that and it is ready to roll out as of December. I am not sure how that would work out, given that we have a UK-wide service. Could the SNODs do the work down there, if we called them something different up here and they had a different role? I am not sure how that would work. I do not think that it would work, which is why we did not look at that option.
The system in Wales has not gone live yet—it goes live next month—but is Wales following the model that you have in the bill? It is not having AIPs, as the Scottish Government suggested. Is it doing what you have outlined?
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Yes, most certainly. I have worked with and spoken to some of the drafters from the Welsh Government and Northern Ireland. We meet up regularly to try to piece this together as much as we can and to make the bill the best that we possibly can. The Welsh Government has not included AIPs separately and neither have I.
Okay. I guess that Northern Ireland is behind Wales, but ahead of us. As far as you understand it, is Northern Ireland’s approach similar to what you are suggesting?
Yes.
I suppose that that takes care of the biggest financial difference between you and the Scottish Government. There is a second difference, which the Government describes as on-going publicity. You have set aside funds to the tune of £2.8 million in the financial memorandum for the publicity that would be required. The Scottish Government’s view seems to be broadly similar to yours on the initial publicity, but its estimate comes to a total of £4.9 million over and above yours; I guess that that is for on-going publicity for the eight years following the initial two. The Government’s argument is that people reaching the age of 16 or anyone who is new to the country might require specific communication, while others will need a general refresher. You do not have that figure. Can you explain the difference between your thinking and that of the Scottish Government?
Yes. The Scottish Government has an obligation under section 1(b) of the Human Tissue (Scotland) Act 2006 to
“promote information and awareness about the donation for transplantation of parts of a human body”.
To meet that obligation, the Government has an organ donation annual advertising budget. It is reasonable to assume that any recurring campaign costs related to organ donation would be included within that annual budget and that no separate advertising budget would be required.
Any recurring organ donation advertising and campaigning costs are not additional expenditure attributable to the bill, so they were not included in the financial memorandum. The financial memorandum includes the most up-to-date organ donation advertising spend information that was available, which was £527,000 for 2012-13.
In your view, the bill leads to an increase in advertising spend for years 1 and 2, but it does not have an impact on that spend in years 3 to 10.
Yes. That is right.
Thank you.
I have just two questions, one of which is a follow-up about the authorised investigating person. NHS Blood and Transplant suggested in its submission that it would cost around £1.1 million a year to ensure the 24-hour availability of such nurses 365 days a year. It seems to accept your premise that you do not need a whole new bunch of people—there are existing people—and it has not commented adversely on the amount allowed for training, but it seems to suggest that those people need to be available 24 hours a day. Can you comment on that?
The sum of £1.1 million is NHSBT’s estimate of employing an additional 18 staff as authorised investigating persons. However, I repeat that that is not a requirement of the bill, as you are probably well aware by now. That was not NHSBT’s approach to the implementation of the Welsh soft opt-out legislation, which updated the policies and processes of the senior nurses—SNODs—and the clinical leads, who are called CLODs, to reflect the changes to their roles. As NHSBT provides a UK-wide service, I would expect it to take a similar approach in Scotland.
If they have done it in Wales, they can do it in Scotland—that is very helpful to know.
Finally, let me turn to Wales for a minute. The Scottish Government wants us to wait and to evaluate because the opt-out legislation in Wales is fairly recent. That is not unreasonable. Why should we not wait?
The Welsh Government will monitor the process—it has started to monitor, but it has not started the process. It will evaluate the impact of the soft opt-out legislation over a five-year period, and the final report will be published in 2017, which is a long way away.
The Scottish Government’s decision to wait for at least two more years will have a financial impact on the NHS. Paragraph 31 of the financial memorandum makes it clear that the costs of kidney transplant procedures are offset due to the costs associated with dialysis and the length of time for which a patient is expected to survive on dialysis. Again, 74 per cent of people awaiting organ donations are waiting for kidneys. There will be a financial cost to the NHS in continuing dialysis treatment for the 425 people who are waiting. In financial terms, that means £30,800 per patient, per year.
Six hundred and nine kidney transplants will save the NHS £145 million in dialysis costs. Waiting for at least another two years—it could be longer—would incur not only a financial cost, but a cost to those people affected. I am afraid that that is the real cost. The longer people wait, the larger the number of people who are taken off the waiting list because they are so poorly or, as the convener mentioned, who pass away because they are so ill.
The deputy convener mentioned that. I am too sensitive to mention such issues.
I am sorry.
That appears to have exhausted members’ questions. Do you want to make any further points before we wind up the session?
Are there no more questions? I was just getting the hang of it.
I cannot force them to ask questions.
I hope that I have given the committee what is required. If the committee requires any further information, please do not hesitate to ask; I will get back to you in writing with the figures and information that we have.
Thank you for that offer, which is very helpful. If we need to, we will take it up.
12:22 Meeting suspended.