Scottish Cancer Drug Fund (PE1407)
Good afternoon, ladies and gentlemen. I welcome you to the seventh meeting in 2011 of the Public Petitions Committee. We have received apologies for absence from Bill Walker. I remind members and those who are watching events from the public gallery to switch off their mobile phones and electronic devices.
Thank you very much for having me here to speak on a sensitive issue, but one that is close to my heart. I lodged my petition, first, because Scotland has a serious cancer problem. I mention some figures in the petition, but I will run through them quickly again. In Scotland, 48 per cent of women and only 42 per cent of men survive cancer after diagnosis, compared with survival rates in England and Ireland of 52.7 per cent and 51.9 per cent. That is clearly bad. Research by the Rarer Cancers Foundation has found that, since the cancer drugs fund was set up in England, 23 new treatments have been made available in England but not in Scotland. Also, Scots are now three times less likely to get cancer drugs than people in England, which I find very worrying indeed. Something must be done, and I hope that my petition will achieve that.
Thank you for your excellent, detailed presentation, Mr Walker. I have a couple of quick questions.
Very much so. It is very worrying. As part of a united country, we should be treated the same when it comes to healthcare and accessing drugs. It is appalling that we are now three times less likely to get the drugs when we have a cancer problem. We need to do something about that.
The briefing suggests that not all health boards in Scotland have written policies on their cancer drug treatment regimes. Could you say more about that?
They normally do not. If this proposal gets implemented, it will have to be written in to reflect regional and national standards, but it has to be a patient and doctor-driven thing.
In summary, there seem to be quite severe differences between Scotland and England, but also between health boards within Scotland, because of the different approaches that they take. That is certainly a theme that we have picked up from other petitioners in other areas in the past few months. Thank you for answering my questions. I will now throw it open to my colleagues.
Thank you for coming. I want to pick up on the differences between England and Scotland. I do not know how many strategic health authorities there are in England—it would be helpful if we could find out exactly how many there are, because the £200 million that is available in the first year will be spread among them. The strategic health authorities get a share of this £200 million, but it is still up to each one to determine which drugs it will be prepared to fund. That is a question as well. It is still incumbent on the strategic health authorities to say which drugs they will buy, so there is still a postcode lottery, whatever you may think.
I read the cabinet secretary’s response and followed the debate in Parliament very closely. She talked about equity in drug treatment and said that we should not have a drug fund that focuses just on cancer drugs. However, as I mentioned, we have a big problem with cancer, which we need to tackle. That is why I lodged the petition. I think that we need to set up a Scottish cancer drug fund, but it would cost only around £5 million, rising, possibly, to £19 million, which is a small amount relative to the total health budget. I am sure that you could find ways to set up many other funds to pay for drug treatments for diseases such as heart disease and Alzheimer’s.
I am not disagreeing with you. I just want to open it up in order to see the merits of a drug fund. Obviously, this is the petition before us, but I am asking how much of the £200 million will be spread across England. The drugs fund in England was started only in April 2011 and we do not have any evidence to back up how effective such a fund would be if we implemented it in Scotland. Is having a separate drug fund the best way to fund cancer drugs? That is what I was getting at when I mentioned the comments of the cabinet secretary and the lack of evidence about the fund in England. I may come back with some questions. Thank you.
Thank you very much for your petition and your presentation. I spoke in the debate on the cancer drug fund and I have two questions. I did a lot of background research and read many articles. The convener spoke about a postcode lottery between Scotland and England, but an article that I read in The Lancet Oncology said that the cancer drug fund in England has by all accounts established a postcode lottery there, as certain health boards are not getting access to the funding that other health boards are. Do you have any evidence about how the fund has been operating south of the border?
I do not have any evidence on how the cancer drug fund has been set up south of the border but, if it was to be set up in Scotland, I think that an equal grant would have to be given to every health board so that the boards could reflect their own regional differences and help patients in their area.
It was about the emphasis on the early detection of cancer.
Sure, that is great. Anything that can help in the early detection of cancer is fine and we must concentrate on that, but we must also move towards proper treatment of cancer. Drugs will have to be taken more seriously.
I sadly missed the debate in September, because I was off sick. I have a lot of sympathy with the petition. You may or may not realise that my party has a commitment to a cancer drug fund for Scotland. That commitment was in our manifesto, so I agree with a lot of what you say. I notice that the English scheme is time limited to three years. Do you envisage that, if there was to be a Scottish scheme, it would follow the same path?
Yes. I think that the cabinet secretary might be prepared to move towards a value-based pricing scheme for drugs, so we could set up the same sort of scheme.
That is likely to happen. I hope that value-based pricing would make such drugs more generally available, so that there would be more equity across health boards. I would also look forward to that.
I should not really intervene, because this is my son’s petition, but that is an excellent point about the price that is placed on the drugs in all our hospitals. Who calculates what the health board pays for the drugs and effectively decides how much of the health budget is sucked into paying drug companies for drugs that are currently readily available? Perhaps a saving from the drugs budget could be directed towards what my son seeks. I am sorry, as I did not intend to intervene, but you raise a very good point. How do they work out how much we pay for the drugs?
Mr Walker is welcome to intervene as he is also a witness.
Thank you for coming and for lodging the petition. You mentioned the different rates of success for cancer treatment in England and Scotland. I know that the cancer drug fund is a relatively new fund. Is there any evidence that the prescription rate necessarily equates to rates of success in England?
Yes, I read this morning that the figures from the health boards indicated that we were down in the 800s and England was up in the 16,000s, when it came to getting drugs that were not available.
In the wider context of petitions that we receive and pressure that is put on us about the provision of money for new drugs, Scotland also has high levels of multiple sclerosis, heart disease and Alzheimer’s. Should those diseases also be considered for emergency funds?
Yes. My dad has MS, so I am used to the research behind that. I am interested in medical research into MS because, if he gets better, that makes me better. The sum of £5 million is a small amount. We spend billions of pounds a year on the health budget and on other things, so surely we could find some form of funding to set up a number of funds for various drugs for combating other diseases.
I will just make a general point rather than asking for answers. Generally, the issue is that health spending is huge, as you have heard from the Scottish Government. There is a wider issue to do with the prescribing of generic drugs, because drugs can be extremely expensive. Things may have changed now but, in my early days with the Highland Health Board, it was buying drugs in its own right rather than through a buying group, whereas, in any business, large organisations would normally get together to achieve savings. I do not know whether you have any bigger-issue answers to the question of how we can be more efficient in health spending to allow £5 million to be available for a cancer drug fund.
That comes about through looking at the national health service and what it spends, and carrying out a spending review to ensure that enough money is being spent on patient care and not on waste. It should also involve a review of the SMC which, as far as I am aware, allocates drugs based on their cost effectiveness rather than on clinical care needs.
I think that there is also a role for Procurement Scotland, which is very important in getting good value in health spending for the Scottish taxpayer.
I will just add—although as I keep saying, it is not really my place; I am supposed to be leaving it all to my son—that we are all acutely aware of the demands on all aspects of the health service, whether they involve drugs or personnel. We all read in the newspapers almost every week about drug companies that claw back their research and development costs by charging health boards or the health service an astronomical amount of money for drugs. I am thinking about paracetamol, as there was a report a couple of weeks back that said that some health boards were paying a fortune for 20 paracetamol tablets, which you can get for 20p at the corner shop. There must be a way of holding to account the people who are signing the cheques for the drugs that go to the NHS.
I thank you both for your evidence, which has been very interesting. I will ask my colleagues to consider the next steps.
I am interested in continuing the petition, and in getting some information from England on how many SHAs there are and how much of the £200 million they get. That scheme has just started, so it would be interesting to see what is happening there.
I would add to that list the Rarer Cancers Foundation, which has had significant difficulties with the availability of orphan drugs in particular.
I think that there would be merit in writing to a selection of health authorities in England to ascertain their views on how the cancer drug fund has operated. We should also consider writing to the royal societies for oncologists and radiographers—I am not sure of the exact titles—for their particular views, because they have publicly expressed views on a cancer drug fund in the past. If we are going to get views, we might as well go to the experts as well as to the people at the managerial level.
That would be radiologists rather than radiographers.
I defer to my colleague’s expertise.
The Rarer Cancers Foundation’s research showed that there is a delay in the approval process for non-standard treatments for cancer and that on average it takes a lot longer in Scotland than in England. I think that we need to ask questions about that.
Do members want to mention any other areas that we should concentrate on? Are members agreeable to the question that has been raised, and to the suggestion in the clerk’s note that we write to the Scottish Government to seek its views on the issues that are raised in the petition and on the quote from the cabinet secretary? I suggest that we write to Procurement Scotland and ask whether it has any role in relation to the efficiency of spending on cancer drugs. I am not quite clear on that, and it would be useful to find out what its particular role is.
I wonder whether the Royal Pharmaceutical Society would have any input into the issue.
Do members agree to continue with the petition with regard to the points that have been raised?
I thank Jamie and James Walker for attending. You gave excellent evidence, and I thank you for answering the questions so fully. Thank you again for coming.
Pernicious Anaemia and Vitamin B12 Deficiency (Understanding and Treatment) (PE1408)
Our second petition is PE1408, on the understanding and treatment of pernicious anaemia and vitamin B12 deficiency. Members have a note by the clerk, a SPICe briefing and the petition.
I lodged the petition after my experiences of the realities of trying to get an effective level of treatment for a suspected vitamin B12 deficiency. Although my reason for requiring B12 is not the most common one, it nevertheless drew my attention to the major failings in the diagnosis and treatment of the condition. You can see from the petition that, solely due to the doctors that I have, I fared well. However, I was always aware that I was the exception. It is for that reason that I fight on behalf of others who struggle to be taken seriously.
Thank you very much for your evidence.
A doctor in County Durham has a good understanding of the condition and treats it appropriately, but he is about the only one in the United Kingdom. That is exactly how he describes the illness: forgotten.
I am glad that Andrea MacArthur lodged the petition. I declare a particular interest, in that my wife has MS and pernicious anaemia. She has been diagnosed with MS for almost 25 years and as having pernicious anaemia for the past seven years, I think.
That will certainly be a very difficult task.
John Wilson’s wife should be given an injection every other day until no further improvement occurs. The injection that she gets is of hydroxocobalamin. A form of B12 called methylcobalamin repairs the myelin sheath. There are pages and pages of research on that.
After the initial diagnosis of vitamin B12 deficiency, the treatment was regular. Under the SIGN guidelines, the injection should be three-monthly but, as I said, my wife’s GP—who has treated her for MS symptoms as well as pernicious anaemia—has decided to give the injections more regularly. That was his decision.
The society is poor and has no money at all. We held a conference in June down in south Wales at which we had professors from the University of Oxford, the University of Cambridge and Trinity College Dublin and various GPs who are all concerned about the issue. When I invited along the Royal College of Pathologists’ president, he told me that I was in a unique position to restart the debate. The rather vulgar issue of money was not discussed.
The petition was extremely interesting to read. I have a medical degree, but I was not aware of a lot of information in the petition, particularly on the active B12 test, which measures the useful level that is circulating.
It has been a long, long time. People used to be given a maintenance injection once a month of exactly the same medicine as they get now. For some reason that is not recorded, that was changed. Was it in the 1970s?
It was 1974.
It was changed to every two months. In the 1980s, it was changed to every three months. The medicine did not change in any way and no explanation was given for why the period was extended to three months. In France, you can freely go into any pharmacy and buy the same stuff in the same strength. The literature that comes with it tells you to take it monthly. People in France are on three times as much treatment as people in the UK for the same thing and we do not know why. We do not understand it either.
When I was active in clinical medicine, the injection was monthly. I was not aware that that had changed as the years had gone on, but I am out of touch with clinical practice.
Thank you. Nanette Milne is right that we could go down the route of having individual members’ business debates, but it is also competent for this committee to go for a committee debate. Does any other member wish to ask a question or make a point?
I echo what has been said. I have a friend who has the same condition and I am sure that she is not even aware of what is in the papers. I will certainly let her see them.
Thank you. Do any other members wish to contribute? Does either witness wish to add any points at this stage?
A senior medical professional asked me to point this out. The test for pernicious anaemia is about 50 per cent accurate, but vitamin B12 deficiency is current in about one in 10 of the population. The symptoms are so insidious—they creep up on you gradually—that the patient often ignores them until it is too late. It is more prevalent in the elderly population, so about one in five have it. Given Scotland’s ageing population—along with the western world’s ageing population—it will become even more of a problem. Somebody needs to take a good look at it.
Thank you very much for your evidence. If you will bear with us for a couple of minutes, I will hand over to the committee to decide on the next steps.
Convener, you suggested a committee debate, which would be better and more effective than a members’ business debate, which I suggested. If it is competent for us to do so, I support trying to get a committee debate on the subject.
I agree with Nanette Milne. If we can get a committee debate in the chamber I would welcome the opportunity to raise the issue more widely. I hope that, after today’s presentation, there will be some media coverage of the issue. We might be able to get the message out more widely. The evidence that we got when the petition was lodged opened a few people’s eyes. For example, my wife did not know about the Pernicious Anaemia Society. She has now been able to speak to other people about the issue and make them aware of the society and, I hope, get them signed up to it.
We could also write to the Royal College of General Practitioners, asking about the training that GPs get—or should get—to deal with pernicious anaemia.
I am not a medical expert but I feel that the petition contains strong evidence to back up the treatments that are being advocated. I agree with John Wilson that we should approach the Scottish Government; indeed, I suggest that it consider conducting, perhaps with UK health ministers, a review of the available treatments. Until such time as that review reports, we should make GPs aware of non-serum testing.
I think that the clerks picked up the point, but I note that Mr Hooper mentioned work by Oxford university. Would it be possible to get that report?
I approached two professors from Oxford and a professor who is at Cranfield University and Cambridge and asked them whether I could give their names to the committee. The three of them agreed and, indeed, are very anxious to get involved and provide information. I can give you their names if you wish.
We appear to be making our first bid for a committee debate. The procedure now is to apply to the Parliamentary Bureau for a slot in due course. We will also take up John Wilson’s point about pursuing the Scottish Government to answer some of the questions raised in the petition and the clerks will follow up the other points that members have made.
In order to put the issue into perspective, we made a documentary about the problems. The DVDs are sitting in the boot of my car but I can distribute them to members if they so wish.
Thank you very much for that offer. I am sure that the committee will want to watch that at a future meeting.
Scottish Public Services Ombudsman (Review) (PE1405)
PE1405, in the name of Andrew Muir, calls for a review of the Scottish Public Services Ombudsman. I invite the committee to consider the petition and the SPICe briefing and to discuss the action that we should take.
I note that the Local Government and Regeneration Committee is considering the SPSO’s annual report for 2010-11 tomorrow. Would we be able to close the petition and refer it to that committee?
Do members agree with that recommendation?
It seems only sensible to refer the petition to that committee, which is actively considering the issue, although we cannot guarantee that it will be able to consider the petition tomorrow. Are members agreed?
Technically, we are referring the petition to the Local Government and Regeneration Committee under rule 15.6.2.
Overseas Aid and Donations (Suspension) (PE1406)
PE1406, in the name of Ronald Hunter, calls for the immediate suspension of foreign aid. Paper PPC/S4/11/7/4 refers. I invite the committee to consider the petition and the SPICe briefing and to suggest next steps.
I suggest that the petition, which has been submitted a second time and relates to £9 million from the Scottish Government budget that is being allocated to areas of great deprivation, be closed on the ground that we agree with the Scottish Government that providing international aid is a very worthwhile use of Government money.
I am not keen on closing petitions when they are first presented to the committee. I am not saying that I support this petition, but I think that we owe it to the petitioner to ask for evidence from organisations, including—as Sandra White correctly pointed out—the Scottish Government, to justify the use of international aid, explain how that aid is being used and highlight the benefits of the Parliament and Government’s international commitments. When we get that initial evidence, we can discuss where we will go from there.
As I have already pointed out, this is not the first petition on the issue from this person. In September 2009, a similar petition was lodged and, at that time, the reasons for spending money on international aid were set out. This is the second petition from the same source.
I fully agree with Sandra White. I note that the petition calls for the money in question to be spent on tackling
Just to clarify, I do not think that John Wilson was making a judgment for or against the petition, in terms of its merits. He was merely making the point that, although the subject of the petition has been before the committee in another guise, this is, technically, a new petition. There is a general issue about whether it is in order to close a new petition without doing anything at all.
I think that your understanding is correct, and I fully understand where John Wilson is coming from. However, it is a value judgment that we must make on a petition-by-petition basis. I do not think that the petition is asking anything particularly new, when we compare it with the petition that was lodged previously. PE1406 does not seem to have moved forward with regard to the discussion and argument around the issue—what there is of it. The petition appears simply to be a repeat request. I do not think that it would be productive for the committee to waste officials’ time by asking for a rehash of evidence that has already been provided.
I think that this country—at UK and Scottish levels—has a proud record of trying to help countries that need help. In some cases, there is an issue about whether money is correctly spent, but Sandra White is right to say that money is going to projects where it is well used and is not going to support corrupt Governments. I agree with those who believe that the petition should be closed that there is not a great deal to be gained by going further with the petition, new though it is.
The committee is fairly clear that its next step will be to close the petition. However, it is worth noting the general principle that John Wilson raised.
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