Public Petitions Committee

Meeting date: Tuesday, December 11, 2012

Official Report 517KB pdf

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New Petitions

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Organ Donation (Opt-out System) (PE1453)

Good morning. I welcome you all to this meeting of the Public Petitions Committee. As always, I ask everyone to switch off mobile phones and other electronic devices, as they interfere with our sound system. I have received apologies from Jackson Carlaw.

Agenda item 1 is consideration of new petitions. There are six new petitions for consideration; the committee will hear evidence from petitioners on three of them.

The first new petition is PE1453, by Caroline Wilson, on behalf of the Evening Times and Kidney Research UK (Scotland), on an opt-out system for organ donation in Scotland. Members have a note by the clerk, the Scottish Parliament information centre’s briefing, and a copy of the petition.

I welcome our witnesses, who are Tony Carlin and Caroline Wilson. Thank you very much for coming to the meeting, and congratulations on your petition. I ask Tony Carlin to make a short presentation of about five minutes. I will then ask my colleague Jackie Baillie, who is here on behalf of the petitioners, to say a few words, after which I will ask a couple of questions to kick off and then ask my colleagues to ask questions.

First of all, I thank the committee for taking the time to listen to our reasons for calling for a change in the legislation on organ donation, as laid out in our opt for life campaign.

Every day in the United Kingdom, three people die—usually needlessly—because of a shortage of suitable organs for transplantation. In Scotland, around 650 people are waiting for a transplant to give them a second chance of life. Around 20 per cent of those who are waiting for a new liver will die not because they have to, but because a liver was not found on time. The figure for those who are waiting for a heart is even higher.

People who suffer from kidney failure also die, although they sometimes live quite miserable existences on dialysis for years on end; they survive, but with little quality of life. One of the things that shocked me and our team was that, aside from the human need for kidneys for transplantation, the treatment is cost effective. The cost of keeping someone alive on dialysis for just one year is roughly equal to the cost of a transplant operation. Some people have been on dialysis for 10, 15 and 20 years or more.

The Scottish Government is to be commended for its incredible work over the past five years on increasing the number of people who have signed up to the organ donor register. Although that is not our key goal, we have supported it throughout the campaign by providing information on how to sign up to that register. However, the fact remains that, despite an overwhelming number of members of the public backing the principles of donation—some figures suggest that as many as 90 per cent do—fewer than half the Scottish population have signed up to the register, and there are areas, including the west of Scotland, where the numbers who have signed up are pitifully low. It may be possible to change that under existing legislation, but it is unlikely that it could be done in less than a decade or 15 years. Opt out, or presumed consent, offers the possibility of delivering hope to people who will otherwise die in those years as they wait in vain for the phone to ring.

That is why we are calling for a move to a soft opt-out, in which the presumption is that the deceased person wishes to donate their organs while the views of relatives are still allowed to be taken into account and honoured. There will be plenty of safeguards in place to protect the young and the vulnerable. Families will still be consulted, but the conversation will start on the basis that the deceased had made the choice to donate.

One of the myths about opt-out is that it somehow removes or limits the choices of the deceased. In fact, the reality is that the choice remains exactly the same—to donate or not to donate—and only the presumption changes. A universal, easy and accessible opt-out process is absolutely deliverable. Both the British Medical Association and the Scotland Patients Association believe that opt-out provides greater respect for the patient’s human rights and wishes.

It is almost impossible to find exact measures of the success of opt-out in other countries—for example, Belgium and Spain—because it is usually part of a wider donation strategy, but the research that we found suggests that it makes a statistically significant positive improvement. The head of Belgium’s transplant strategy, Luc Colembie, noted an 86 per cent increase in the number of kidneys that were retrieved for transplant when that country switched to opt-out. Today, only a tiny percentage—1.7 per cent—of a population of 11 million have said that they wish to opt out. In Spain, there are 35 donors per million; in the UK, the figure is around 15 donors per million. In 2015, Wales will become the latest country to switch to opt-out, which it views as an effective means of increasing the number of life-saving transplants.

All of that is why we began our opt for life campaign, which has now received the support of the British Medical Association, the Scotland Patients Association, the British Heart Foundation, Kidney Research UK, the Royal College of Surgeons, the Cystic Fibrosis Trust, the Scottish Kidney Federation, the National Kidney Federation, and others.

Soft opt-out has also been adopted as policy by both Labour and the Lib Dems, and it has the support of the majority of MSPs across all parties and, we strongly believe, of the general public. When we started the campaign, we set a target of 10,000 signatures for our petition. Even after we reached that target and without our pushing much harder, the signatures kept coming in. We now have around 18,000 names on the petition, although it is, in essence, just a Glasgow and west of Scotland initiative, I have no doubt that a national campaign would have received even greater support.

I could speak for hours about some of the stories that we have been told or have come across in the course of our campaign: the anguish of parents who have watched their children needlessly die of genetic conditions that could have been resolved with a transplant; the desperation of a man who flew to India in the hope of buying a kidney; and the deep satisfaction that is felt by grieving relatives who have, following the death of loved ones, consoled themselves with the knowledge that others have been given the gift of life. However, there is little point in detailing those stories, because each of you knows or has read of people in the same position—waiting for the phone call that may never come while living a life of increasing misery, fear and despair.

A switch to soft opt-out legislation will most certainly not decrease the number of donors but could, at a stroke, provide many more gifts of life, which is why I hope that the committee will give due consideration to our petition. Every year that we wait, desperate people die. It is our belief and that of organisations such as the BMA, the Royal College of Surgeons and a raft of health charities and patients’ groups that a change in legislation can save dozens and perhaps hundreds of lives over the next decade. However, if it saves only a handful of people—a son, daughter, mother or father—it will have been a change for the better. Please take this opportunity to give hope to the people who are waiting today for the call that will not just change their lives but save them. I thank you very much for your time.

Thank you for your presentation. Before I ask questions, I will bring in my colleague Jackie Baillie.

Thank you, convener and committee members, for allowing me to say a few words on the petition.

I commend the Evening Times for its opt for life campaign, which has been a measure of how remarkable journalism can be in promoting good. In these times, it is a shining example of what can be achieved.

We know that hundreds of people are currently waiting for organ donation and that, as Tony Carlin said, 90 per cent of people support organ donation. However, despite the Government’s commendable efforts, only about half the people who support organ donation are registered as organ donors. There is therefore a huge opportunity on which we could capitalise.

An overwhelming majority of people in Scotland who support organ donation—I believe about 70 per cent—support a shift to a soft opt-out system of organ donation. As has been described, such a system operates on the basis of presumed consent, although families must still be consulted. There are therefore safeguards within the proposed system. For me, the clincher is that opt-out systems in other countries show a 30 per cent increase in donation rates—that, to be frank, means saving lives.

The soft opt-out system is Labour Party policy, but I do not regard the issue as being party-political. I know that Alex Neil, before he became the Cabinet Secretary for Health and Wellbeing, supported the soft opt-out system, so I am hopeful that we can make progress on that basis. Indeed, my colleague Drew Smith—who sends his apologies because he cannot be here this morning as he is at another committee meeting—has announced his intention, if the Scottish Government is not prepared to legislate on the issue, to lodge a member’s bill that will be based on the bill that our colleagues in the National Assembly for Wales have introduced. This committee could do a power of good in trying to encourage the Government to legislate in an area in which I suggest that it would command cross-party support in the chamber.

The opt-out would be a small change, but its significance is that it would save lives, which is something that we should take forward in Parliament.

I thank Jackie Baillie for her comments and I appreciate her coming along.

My first question to Mr Carlin and Caroline Wilson will just echo my point at the start. This petition is a good example of how to put a petition together. You have over 10,000 signatures on a petition on an issue that every right-thinking person would clearly want to support. We know that we need more organ donations, both in the UK as a whole and in Scotland. However, some would say that there are ethical, medical and legal issues surrounding the petition’s proposal. Although that is not necessarily my argument, I put it on record that there are issues surrounding the ethics of the proposal. Do you feel that your petition covers some of the ethical issues to do with organ donation?

I fully understand the concerns about the hard opt-out situation, when parents and loved ones can sometimes be hit with distress that they are not capable of handling. A soft opt-out changes one part of the process; it changes the question; it changes the point at which the nursing team first interfaces with the relatives. We start from the position of caring about what the relatives feel; similarly, we care about what the patient—who, sadly, is deceased—felt in their lifetime. The bottom line is that nothing changes. The right to donate is still within the gift of the donor.

I think that the soft opt-out addresses most of the concerns that people have when it comes to relatives. Similarly, the separation between the transplant team and the treatment team means that there should be no ethical issues, because we are talking about two different medical teams that operate independently. Many of the supposed ethical concerns would not exist; they do not exist under the current system, either.

It would have to be made very easy to opt out. That is a key factor. Research shows that medics find it easier to approach families if the presumption is that it is the norm to donate. In countries that have presumed consent, doctors find it easier to approach relatives.

Another concern that sometimes comes up is, “Will they switch off my life-support machine sooner?” Members of the public are afraid of that. However, doctors have a duty of care to do everything that they can to save the life of a patient, and that will not change under an opt-out system.

So, you think that it is important to shift the culture of donation in Scotland?

Exactly. If we were to move to an opt-out system, there would have to be a massive publicity campaign. That would get people talking about organ donation and would mean that people would be more likely to tell their relatives what their wishes are, which is a key factor.

My final question before I bring in my colleagues is whether either of you has looked at the work of the UK organ donation task force, which I understand made 14 different recommendations. It argues that if its recommendations were taken up, donation rates would increase by 50 per cent over five years. Does your petition chime with the work of the task force?

Caroline Wilson is probably a bit more au fait with the detail than I am, but in 2008 the organ donation task force accepted that things have to change. Not enough organs are available, so change is vital. That has been addressed, to an extent—for example, in Lothian, where there has been an exceptional turnaround in the number of people who sign up to the organ donation register—but the bottom line is that we still have far too few organ donors. The task force has accepted the need for change. It will report back next year on progress and how to move forward.

Back in 2008, the task force found that 72 per cent of people favoured a switch to an opt-out system. I suggest that the figure is significantly higher nowadays, and that it will continue to grow. There is a real momentum behind a switch to an opt-out system because people are fed up with patients dying needlessly.

In 2008, at the start of the five-year review, Nicola Sturgeon set a target for increasing the number of donors by 50 per cent. At the time, she knew that that would be achieved, but she put it on record that more would still have to be done. The number of people on the register still sits at 40 per cent.

So, the rate is far too low, which is causing a huge problem in Scotland.

It is. Most charities’ experts believe that an opt-out system is the best way to increase significantly the pool of donors.

It is inevitable that people will die because of organ failure. If we get 100 per cent of people to sign up, we will not solve that, but no one should be dying because of a shortage of donors. That is no longer acceptable in our society. We have the capability to save many such people’s lives, so it is just not acceptable that we are not doing so.

09:45

What lessons have you learned from what the Welsh Assembly has done? How has that influenced you?

Wales is going to do a variety of things. Obviously, it is not for me to work out the logistics. It is going to have two registers, and people will be able to opt in or opt out. I do not know whether that complicates things, but it means that you can register whether you are in or out rather than not doing so. Wales is also spending a lot of money on a publicity campaign to educate people.

The situation in Wales seems to be quite open and transparent. There seems to be quite a good level of public awareness of the need for such a system and there has been a good programme of educating people about the change.

Later, we will deal with a petition that talks about the links between organ transplantation and cancer, and the guidance and education that is given to medical professionals. In the information that the Evening Times has published about the campaign, I have not read anything about that issue.

I do not follow you—I am sorry.

I am talking about the links between organ transplantation and cancer.

I am not qualified to give a medical answer.

I do not really understand what you mean. Could you clarify what you are talking about?

The people who have lodged a petition with which we will deal later want to raise awareness of the links between organ transplantation and cancer.

That has not been part of our campaign. I do not profess to be a medical expert, but I can say that we would be happy to publicise whatever information is out there as much as we possibly can. However, I suggest that, if you go to someone who would have only six months to live if they do not have a kidney transplant and explain to them that, if they get that transplant, they might have a higher risk of contracting cancer, they will still take the kidney every time.

Yesterday, I heard about someone in England with cystic fibrosis who was given a lung transplant and later contracted lung cancer. The Cystic Fibrosis Trust would say that, if you bring in an opt-out system, you will have more organs to choose from, which would address that problem. Lung transplants from smokers are accepted, but if there were a bigger pool there would be less chance that lungs with a high risk of developing cancer would need to be used, so the circumstance that we are talking about would not happen.

If there were more research, it would be disseminated.

Absolutely. No medical procedure will ever come without risk, and the procedures that we are talking about come with clear risks. The issue is to ensure that patients are aware of the risks and of the consequences both of taking an organ and of not taking it. As long as they are fully aware of those issues, it is their decision—it is not Tony Carlin’s, Anne McTaggart’s or even the doctor’s. If that means that more research is required, then more research is required. However, I do not think that that compromises what we are talking about today.

This is a laudable campaign. What prompted the Evening Times to launch it?

I have been editor of the Evening Times for four years and I have worked there for 22 years. When I became editor, one of the first things that came across my table was the news, yet again, that if you live in Glasgow and the west of Scotland, you die far too young. If you are male and live in Calton, your life expectancy is less than 60 years. That has appalled me for years. While I have been editor, we have run the Glas-goals health campaign, in which we got Glasgow to stub out 1 million cigarettes, walk 1 million miles and lose half a million pounds. Jackie Baillie was kind enough to help us with one of the events that we ran as part of that. We have run the clear the air anti-smoking campaign, which is the most successful anti-smoking campaign that NHS Greater Glasgow and Clyde has ever been involved in.

Was this your personal motivation?

It was totally mine. I am passionate about health and about the life expectancy of people in Glasgow. It is very much my baby. Health campaigns do not sell newspapers. This is about the social responsibility that sometimes comes with being editor of a paper such as the Evening Times. I take it very personally. That is the starting point.

You mentioned Belgium and Spain. Although I am sure that the ethical and legal issues can be overcome, what difficulties have arisen with opt-out in those countries?

I am not aware of any obvious difficulties. It has worked very well in Belgium. The point is that it has to be part of a package of measures; it will not work on its own. That has been proven in Spain. You need to increase the number of transplant co-ordinators and intensive care beds.

I understand that. There has to be a downside somewhere. What are the particular difficulties?

There will always be people who will not agree to this, but the safeguard is that they can opt out. As long as it is made easy for people to opt out, I do not see what the problem is.

In Belgium, only 1.7 per cent of people have opted out. While individual and specific issues may arise from time to time, the vast bulk of the population is quite comfortable with it. Belgium has had opt-out since 1986. The country has a long track record and does not have any issues.

At the end of the day, 28 countries in Europe do this successfully.

If any problems arise, we can learn from all the other countries that have already introduced it. I would not anticipate that we would make the same mistakes as Belgium made back in 1986. Belgium has had 30 years to fix things and we would learn from its lessons.

I understand that. One could argue that there is already a soft opt-out in some cases. For example, the issue of children must throw up some emotional difficulties.

We need to have all sorts of safeguards in place. The conversation always starts with a presumption. Parents would become much more aware of the need to have that conversation and would know that donation is the norm. The starting point is to change basic perceptions. There must be all sorts of safeguards to ensure that children and vulnerable people are protected. Wales has gone for an age limit of 18. I suggest that 16 is more realistic. If you can get married at 16 and vote in a referendum at 16, you can decide at 16 whether you want to donate your organs.

I accept that.

Good morning. I want to examine some of the figures that Caroline Wilson gave earlier. You said that 72 per cent of the population supported opt-out in 2008 and that more people might support it now. Do you have any up-to-date information on how many people would support opt-out?

It has been estimated that it is as high as 90 per cent now, but I could provide more information to back that up.

That would be useful in letting us look at the matter.

In your statement supporting the petition, you said that the Scottish Government is not doing everything it can to radically improve donor rates. However, in 2008, the Cabinet Secretary for Health and Wellbeing said that the Scottish Government was committed to raising awareness about the issue of people donating their organs on their death and to raising the target rate. I believe that you said that the aim in the UK was to increase donation rates by 50 per cent but that we are up to 40 per cent.

I think that the figure in Scotland is 40 per cent, which is higher than other parts of the UK.

By how much?

I think that England is sitting at about 30 per cent.

To be honest, we think that the Government has done an exceptional job under the existing legislation, with places such as Lothian, in particular, excelling. We are certainly not disputing how successful the Government has been under the existing legislation; we simply believe that opt-out would make the situation better.

Do you think, then, that health boards are doing a better job of campaigning on this matter? Is the fact that, for example, NHS Lothian has a higher rate than NHS Greater Glasgow and Clyde down to campaigns by the Scottish Government or the local health board? If the latter, are health boards doing enough to promote the issue?

Last week, I met Michael Matheson, who was very generous with his time. The bottom line is that no one knows exactly why Lothian has been more successful than other parts of the country. It might be partly because Edinburgh royal infirmary is one of the key centres and therefore there might be higher awareness of the need for organ donation.

It has been a long hard slog, but some areas have been successful. However, I do not think that anyone can say that it is down to health board or Scottish Government campaigns, where the Edinburgh royal infirmary is or whatever. Clearly lessons are going to be learned but, as you know, it will take a long time to roll those lessons out whereas we think that opt-out will deliver quickly.

At the end of the day, 90 per cent of people support organ donation but only 40 per cent are on the register. Basically, people are dying because of apathy. For whatever reason, people are not signing the register.

It is true that people are not signing the register. However, I want to find out whether we can move things forward without necessarily having to introduce new legislation. Surely it would be better to increase rates through raising awareness and through campaigning by health boards and the Scottish Government rather than through legislating on organ donation.

Clearly I am going to take some credit for what has happened over the past two years, but the fact is that, although the issue of organ donation has never had a higher profile in the west of Scotland than it has at the moment, the results in the area are still disappointing. NHS Greater Glasgow and Clyde has done exceptional work, including its wonderful campaign to encourage people to discuss the importance of making their needs known to their relatives. As I have said, although the profile of organ donation has never been higher in the west of Scotland than it has been over the past two years, the numbers are, frankly, still very disappointing. I do not think that you can point to any one issue and say, “That’s the answer.”

How long do we have to wait for the numbers to rise through other methods? We are not saying that that would not happen, but it might take decades.

The committee is simply trying to examine the issues that have been raised in the petition and to decide how we take the petition forward. I am very supportive of its objectives—indeed, I carry a donor card myself—and it is quite clear to me that we need more donors. However, this is our opportunity to examine you to decide what responses we will seek and from whom we will seek them.

In your statement, you said that if there were presumed consent for organ donation, the relatives would be less likely to refuse it. What evidence do you have to support that statement?

The Czech Republic, Hungary, Poland and Slovakia have presumed consent systems, and the family refusal rates in those countries are less than 10 per cent, whereas the rate in the UK is 40 per cent. It is all to do with the culture of organ donation in those countries; it has become the norm to donate, so it is easier to approach the families on that.

10:00

The 40 per cent rate in the UK, which does not have presumed consent, is just due to approaches by medical staff for consent.

Exactly. Families are refusing consent for relatives who may have wished to donate.

I have a minor point to make in response to John Wilson. It might be instructive for the committee to have a look at what the National Assembly for Wales has proposed on this issue. It also published research that indicated a close association between operating a legislatively based soft opt-out system and an increased rate of donations. Legislation avoids the need to keep up the level of publicity over successive generations; without legislation, the push for one generation would need to be repeated for others. A more cost-effective and generally effective way of proceeding for organ donation would be to legislate in the manner described by the Evening Times.

Could you clarify what you are saying? Did I pick you up correctly saying that if we went for the soft opt-out option, we would not have to remind people continually that, if they do not opt out, there is presumed consent?

No. As part of the campaign, we would of course need to tell people about their rights to opt out. However, the current effort has got the level to 40 per cent, which is impressive but unlikely to be improved dramatically, particularly if we do not understand what part of the current effort works to the best effect. I believe that if we adopted a legislatively based system, there would be ordinary, everyday work to inform those who wished to opt out. However, if we do not have such a system, the current efforts to get consent would have to be repeated for each successive generation to maintain the level at even 40 per cent, never mind the 90 per cent at which it needs to be, which is the percentage who support organ donation.

I accept what Ms Baillie says, but I think that it would be incumbent on any Government and health service always to remind individuals and families of the soft opt-out position. The committee dealt with a petition a couple of weeks ago on the issue of a deceased person’s body being part of their estate and belonging to their family. At present, the family can decide how to dispose of the body, whether the whole body or its organs. If we went for the soft opt-out option for organ donation, we would therefore need to look at other pieces of legislation if we wanted to ensure that people would be constantly aware of the position. It is an intergenerational issue, because we would need to continue to make people aware that there was presumed consent for everyone unless they opted out.

Thanks for that. We are still engaged with our witnesses, and Angus MacDonald has the next question.

Good morning, panel. I want to explore a wee bit more the Welsh example that has been raised, which I believe is still a proposal and has not been implemented yet. Do you know whether the Welsh have a projected figure for increased donations from the proposed system? In addition, do they have a projected figure for opt-outs?

The Welsh estimate that they will have an extra 45 organs for transplant each year. If we translate that figure to Scotland, it could be between 60 and 70 organs each year. Were you asking me about costs to implement the system?

No, it was about percentages. Do the Welsh have a percentage projection for opt-outs?

I could get that information to you.

I just thought that you might have it.

I do not have it right now. I have figures for other countries. In Belgium, I believe that about 2 per cent opt out.

The figure that I have is 1.7 per cent.

And in Spain?

I do not have the Spanish figure.

In Spain, the rate of organ donation from deceased donors is 35 per million population, as opposed to 15 per million population in the UK. That perhaps gives you an indication of what we are talking about.

You have presented the case well for a soft opt-out and you have highlighted the weight of evidence from other countries that suggests that such a change would improve organ donation rates. You also suggest that the policy of a soft opt-out would be popular. In that case, why do you think that the UK organ donation task force did not recommend moving to a soft opt-out system when it published its 14 recommendations to improve the current situation? I understand that it said that there were significant downsides to the introduction of a soft opt-out system. How do you explain why a group of experts who were brought together to address the problem of organ donation did not arrive at the same conclusion as you?

If you ask two surgeons a question, you will get three answers.

I genuinely do not know why the group came to that view. However, if you speak to Professor John Forsythe at the Edinburgh Royal infirmary, he will say that he is marginally against moving to a soft opt-out and if you speak to Dr Mackie at the heart transplant unit in the Golden Jubilee hospital, he will say exactly the opposite. I imagine that there was no real unanimity in the task force, even if it was presented in that way. As you will be aware, sometimes a committee will put forward a position even though the views within the committee were not unanimous. I would be astonished if that were not the case within the task force. I would be similarly astonished if the opt-out system were not given more credence when the task force reports next year.

The bottom line is that, when you look at the statistic from 2008 that says that 72 per cent of people believe that opt-out is the way forward, it is astonishing that the task force did not go for it the first time around. As I said, I will be even more astonished if it does not go for it in its next report. The mood of the public is that the law should be changed and lives should be saved.

I do not know why the task force came to the conclusion that it did, but I can point to 28 other countries that disagree with it.

Yes, but a host of other countries are retaining the opt-in system.

I am not aware of any country that went for an opt-out system and then changed its mind and went back to an opt-in system. I suggest that the lesson that those 28 countries have learned is that the system works. They certainly do not want to change back.

One of the arguments that are used by health professionals is that they fear that the element of trust that is essential between clinicians and patients might be under some strain, particularly in relation to end-of-life care, and that people might be treated with an eye to organ-harvesting purposes, which might change the culture and the emotional atmosphere of the context in which people are cared for. How would you answer that?

I understand the point and agree that there are issues that need to be dealt with. Being open with the patients and having dialogue with them is essential. The bottom line is that the patient associations to which we have spoken do not see that as an issue. They believe that the wishes of the patient will be better taken care of if there is a soft opt-out system.

By separating the treatment teams and the transplantation teams, we already have a safeguard in place that ensures that nobody can sensibly accuse anyone of harvesting. You are right to say that we need to explain that to the wider public, so that they understand that there are safeguards in place and that, although harvesting may be a fear, it cannot happen under the existing system regardless of whether we move to an opt-out system.

Is there a concern among those who sympathise with the campaign that, if we do not do make the change, we will end up with an international trade in organs? Given what is happening with privatisation in the health service down south, is there a danger that countries such as Belgium and Spain that have the soft opt-out may become purveyors and providers of organs if we do not go down that road?

What would the concern be with that? If my child needed an organ transplant, for instance, it would not bother me in the slightest if the organ came from someone who came from France.

Is the concern that we would get into a market situation that involved buying and hiking costs, and generally distorting the rationale behind people in other countries opting out?

I am not aware that that has been an issue in any of the countries that have opt-out. I believe that international transplants already happen occasionally under the current system, and I imagine that that would continue.

I am not aware that anybody is suggesting that they have come across that issue in Europe, but I cannot guarantee that it does not happen outside Europe. We have all heard stories—and we have reported them—about someone being desperate enough to go and buy a kidney in India. I cannot say that there will be an absolute guarantee in that regard, but that is the case just now anyway. There is a possibility of that happening, but I am not aware of it ever having been raised as an issue in Europe.

Thank you for that. I thank both of you for coming along today. The committee will now consider the next options. I hope that other newspapers throughout Scotland will take a leaf out of your book and consider running campaigns like yours. The petition is certainly one of the best that I have seen in the past year and a half in which I have been doing this job.

I believe that the best Christmas present that anyone can give is to sign up for organ donation and to let their nearest and dearest know. I am sure your readers will be able to read about that in the next edition.

With regard to the next steps, the committee is very positive about your petition, and we would want to continue with it by taking advice from the Scottish Government, NHS Blood and Transplant, the British Transplantation Society and the BMA, which are all relevant bodies.

Does John Wilson have any other ideas for organisations to which we can write?

Yes, I do. I suggest that we write to NHS Greater Glasgow and Clyde to ask it about the respect my dying wish campaign and what successes it has seen to date as a result of that.

Given that we have been presented with evidence today that NHS Lothian seems to have a successful rate, we should write to that board to ask what materials or discussions it is using to increase the number of patients or individuals who are opting in at present. We can then get a feel for what is happening throughout the country, and which campaigns have been successful or less successful.

I support that. I would not just restrict that contact to NHS Lothian—if there is best practice, we should request that it is examined by all the other health boards so that they can see what might be done.

Is that agreed?

Members indicated agreement.

I thank Jackie Baillie for coming along to support the petition, and Tony Carlin and Caroline Wilson for giving up their time to give such good evidence today. I will suspend the meeting for two minutes to allow our witnesses to leave.

10:14 Meeting suspended.

10:15 On resuming—

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Organ Transplantation (Cancer Risk) (PE1448)

Our second new petition is PE1448, by Grant Thomson, on improving awareness of the cancer risks in organ transplantation. Members have a note from the clerk and a SPICe briefing on the petition.

I welcome our witnesses, Grant Thomson and Sean Argue, and thank them for coming along today. I invite Mr Thomson to give a short presentation of around five minutes. I will then kick off with the first couple of questions, which will be followed by questions from my colleagues. Mr Argue, please feel free to intervene in answer to any questions during the evidence session.

I have not prepared a written statement as such, as I was not entirely sure what to expect today. To be honest, I would much rather not be sitting here, given the circumstances surrounding the petition. The brief that I was given suggested that I should not go over ground already covered in the petition but perhaps elaborate on certain issues, so I will give a brief résumé.

Sean Argue, to my left, was Sharon Argue’s father. Sharon Argue was my partner of 12 years and mother to my two children. She died in July this year, after a short battle with skin cancer. In 2004, Sharon received a kidney transplant—by coincidence the subject of the first petition discussed this morning—but she was never made aware of the risks of developing skin cancer. It struck me, when the question was put to the previous occupants of the chairs that we are sitting in, who have obviously done a lot of research into organ transplants, that that was news to them as well.

The reason why I started researching the issue is that, about an hour before Sharon died, the consultant who was treating her commented that it would seem that, unfortunately, the likelihood was that her cancer was caused as a result of the medication that she was taking subsequent to her kidney transplant. She was taking ciclosporin, which is an immunosuppressant medication that prevents the body from rejecting the new organ. He referred to it as chemotherapy. Basically, ciclosporin is an extremely toxic treatment, but it is essential because, if patients are not provided with it, in 99.9 per cent of cases the transplant will fail.

Let me be clear that the petition is not a campaign against the use of ciclosporin. In response to a question, the editor of the Evening Times said that he was sure that, if someone was told, “Well, you have six months to live unless you have a transplant, but the downside is that there is a high risk that you will develop skin cancer at some point post op,” they would without doubt take the transplant. I speak for Sharon—unfortunately, she is not here to speak for herself—when I say that I know for a fact that, if she had been told of the risk, even if it were that 80 per cent of patients would get skin cancer, she would still have gone ahead with it. A life on dialysis was not for her—I have seen what that can do to people. However, people who require a heart or a liver transplant do not have that option; if they do not get a transplant, they will die.

I reiterate that the petition is not a campaign against the use of ciclosporin, which I suppose we might call a miracle drug. Ciclosporin has given life to tens of thousands of people around the world since its immunosuppressant properties were discovered in the early 1970s. However, there is an issue among both the medical profession and patients about understanding just how toxic and potentially damaging the medication can be.

A week after Sharon died, I spent half an hour on Google—I have no medical background at all—doing simple searches on “ciclosporin”, “organ transplant” and “skin cancer”. The information that I presented in the petition came from that search. I still find it hard to believe that there seems to be such a lack of understanding of the matter. I can tell members only about my experience, which is anecdotal evidence, but there is no reason for me to sit here and make things up. Doctors to whom I have subsequently spoken have been shocked by just how high the risk of skin cancer is in transplant patients. A conservative estimate is that, post operation, 35 per cent of patients will develop skin cancer within 20 years; other estimates are that 40 per cent will, rising to 70 per cent in warmer climates.

The issue is to do with ultraviolet radiation and the changes that the medication makes within the body when it is taken over a long period. After a person has a transplant, they must stay on the medication for the rest of their life. Its dose can be reduced, but its use has to be maintained indefinitely. Stopping it is not an option. That is my understanding through my uneducated eye from the limited research that I have done in the past four months. There are no alternatives; the medication is a necessity.

Three issues have been included in the petition, two of which are about the awareness in the medical profession of how high the risks are, and the awareness among patients of how toxic the medication is that they are taking. Again, I will speak anecdotally, but I have no reason to make up what I am saying. I started a campaign on Facebook and have received messages from people whom I do not know, saying that it is not only organ transplant patients who are prescribed the medication; patients can be prescribed it for severe eczema, psoriasis and autoimmune diseases. People have contacted me to say that they are on the medication, they know somebody who is on it, or their child is on it for another condition, and they had no idea that there was such a risk with its long-term use. It is clear to me that there is a serious issue. People are unaware of the medication’s drawbacks.

The third issue is that the warnings and patient information that the pharmaceutical company provides are nowhere near sufficient. The patient information leaflet that is provided with ciclosporin is 25 pages long. Skin cancer is mentioned on the 25th page, but it is listed alongside side effects such as nausea, dizziness and headaches. If a person read a list of the side effects of even common, day-to-day medications such as aspirin, they would probably not take them because they would think, “God, look at all the things that could happen,” but the evidence that I have seen, albeit on the internet, is that the medication in question causes cancer; it is an unavoidable drawback in some people. The substance is a group 1 carcinogen. The fact is that there are no greater health warnings on the medication, and that health professionals are prescribing it without being fully aware of how serious it can be. That needs to change.

I have probably run on for a bit longer than five minutes, for which I apologise, but those are the reasons why we started the campaign.

Not at all, Mr Thomson. I know that it must be very painful for both of you to have to come to the meeting. On behalf of the committee, I give you our condolences for the loss that you have experienced.

I have a couple of questions and then I will bring in my colleagues. Your petition makes it clear that some health boards have

“education and awareness programmes and annual skin screening clinics for patients”

and others do not. Have you worked out which health boards provide those things and which do not?

I received a message from a nephrologist who works in NHS Fife, who contacted me to say that he had read the details on Facebook and that he was dismayed that late diagnosis was still happening. He said that a large part of his job is educating people before and after transplant about how careful they must be when they go out in the sun, including the need to wear long sleeves and wide-brimmed hats, to cover their skin and to check themselves regularly for any abnormalities. He also said that high-factor sun protection is available on free prescription for transplant patients. That, again, was something that we were completely unaware of. This is a bit of a cliché, but I would sum up the situation as a postcode lottery. The doctor—I do not want to name him—asked for a copy of the petition so that he could circulate and sign it and give his backing to the campaign.

Unfortunately, NHS Lanarkshire, where Sharon was treated, does not appear to be as switched on as NHS Fife. I do not know why that is. The consultant who treated Sharon up to her death was not a renal consultant but an infections consultant because that was the department she was admitted to. He said that plans had been afoot at Monklands hospital to introduce a skin clinic for transplant patients for some time, but that that had just never happened. I assume that that is, like everything else, a question of time and money. Anecdotally, I was told that dermatology has spoken to that doctor and said that the situation reinforces the need to get the clinic up and running as soon as possible.

I do not think that the postcode lottery is a cliché. The committee’s experience is that it happens quite regularly on a whole variety of health issues that one health board provides treatment and another does not, which makes a lottery of the treatment that people get.

My second question is whether patients should be better informed about the risk of skin cancer prior to transplants taking place.

Yes, they definitely should be better informed. Sharon looked after herself quite well. As Grant says, she would have taken the transplant regardless, for a better quality of life. If she had known the risks then, the spot could have been dealt with and it possibly could have been removed before the cancer moved into her bloodstream.

Sharon developed a small growth on her ear. It looked like a spot, but it turned out to be the primary source of the cancer. As Sean says, Sharon was fastidious about her health. If she had known the risks, she would have had it checked out immediately. In fact, she presented the growth to her renal consultant two weeks before she died.

She met her doctor, who told her that she had an infection and gave her antibiotics. She visited doctors in the Monklands hospital, who said that it was a particular infection and that she should get a certain antibiotic. Before she went to her own doctor, I told her to mention her kidneys because I thought that that was where the pain was coming from. They did some blood tests, increased her iron tablets and asked her to come back the following week. That was when they admitted her and gave her a full check-up. We are talking about a five-month period.

It was a short time.

Perhaps it was three months.

Sean is trying to convey that even, dare I say it, the renal specialist who was looking after Sharon thought that the growth—although it caused him concern—was an abscess, but it was skin cancer.

That was obviously a dreadful experience. The committee wants to look at what lessons we can learn for patients in the future and what preventative work can be undertaken.

Although it is obviously an emotive issue for us, we have tried to keep that out of it as much as possible and to make it clear that it is not a personal issue against a particular health authority or doctor. It is about changing things for the better.

10:30

I reiterate the convener’s comment that we are sorry for your loss. I hope that we will be able to make progress with the petition and get some answers to the questions that you have raised.

In your submission, you highlight the fact that organ transplant patients have a 40 to 70 per cent chance of developing skin cancer. That is quite high. You give some comparisons with the normal population. In relation to the post-transplant medication, do you think that the doctors had enough information or knowledge about the drugs that they prescribed?

I do not think so.

Mr Argue, you have said quite clearly that if the information about the risks of skin cancer had been made available, your daughter would still have gone ahead with the transplant, but she would have been more aware of the need to check her body for any growths following the procedure. Is there a need for more education, not only for consultants and patients, but for general practitioners?

Yes, there is definitely a need for more education for GPs. The guy who wrote prescriptions for my daughter was not aware of the risks.

A big problem for me is that Sharon could probably have been saved if the skin cancer had been picked up earlier. Everyone here will have had spots that they have ignored. If a spot is picked, bleeds and then heals, that is the end of it—there is no problem—but in Sharon’s case, the spot developed its own blood stream. Once it got into her liver, the cancer spread through her body rapidly.

I have no further questions. I wish the petitioners the best of luck.

I add my condolences to those that have already been expressed.

On page of 2 of the petition, you say that the doctor advised that

“skin cancer was a very common problem in transplant patients”,

yet that knowledge does not appear to be that common across the medical profession.

Mr Thomson, can you tell us, on the basis of the good work that you have done through googling and so on, what international information is available that supports your position? Have you had contact with people who are involved in melanoma organisations? We know what we are going to do but, on a personal level, how did you raise the profile of your partner’s situation?

I did that through social media. I contacted various NHS authorities on the matter. I also contacted the health secretary and the First Minister’s office and was told in brief correspondence that it was a constituency issue. My MSP, who is Jamie Hepburn, took up the issue, and I believe that Gregg McClymont, who is the Labour MP for my constituency, wrote a letter to the health secretary about it.

I did not receive any feedback from any official body through social media. The feedback that I got was from patient organisations, one of which is based in west London. In my naivety, I had assumed that what had happened to Sharon was—dare I say it—the tip of the iceberg and that similar things were happening throughout the country, but it transpired that that is not the case. We and Sharon were just extremely unfortunate in that the health board in the area that she happened to be in was well behind the game.

I heard from the West London Kidney Patients Association, which had received a message from a transplant patient since 2001 who stated that they had had it drummed into them pretty much from day 1 that they constantly had to be very careful and had to check themselves because with this particular medication there was a very high risk of developing skin cancer—

I am sorry to interrupt, but I have to say that it concerns me that, in this particular and very difficult situation, that comment could be made in isolation. If anyone gets a transplant, sirens should be blaring and they should be told the upside and the downside of the procedure. You are telling us that that does not happen.

That is correct.

If a GP prescribes the kind of medication that was given to my daughter, something should flash up saying, “Transplant patient—be aware of some risks.”

Touching on the discussion about the previous petition, I realise that getting through a heart, liver or kidney transplant is a big enough task for people and that they perhaps do not want to know that five, 10 or 15 years down the line they are going to get skin cancer. It is easy to say, but if it were me I would be thinking, “Let’s deal with that five, 10 or 15 years down the line. I just want to be here then.” It is not really a for and against thing but, as you have rightly pointed out, it is very disturbing.

I understand that, but this is a serious matter. After all, pharmaceutical companies spend a lot of money on research. If the problem is this common, we should be asking what research is being carried out in this area.

I agree completely.

I welcome the witnesses to the meeting and want to say that I am saddened by their loss.

I am flabbergasted that such information is not readily available. You will have heard me ask the previous witnesses about their campaign, and it was clear that they were not aware of these side-effects. Indeed, until we read this petition, we were unaware of them. Mr Argue is right to say that that kind of information should be screaming out of screens.

When you read what is in the petition, you think that it cannot be true. However, the fact that it has the support of medical professionals, especially those in the field of nephrology, speaks for itself. They know that there is an issue that needs to be addressed.

I cannot tell you how much that saddens and angers me. Obviously, this is not about opting in or opting out of having a transplant—you said earlier that Sharon would have continued with it—but about ensuring that the information is available to allow people to make an informed choice with regard to aftercare. One of our duties is to ensure that information about the good and bad aspects of the process is available because, as I have said, people have to be able to make an informed choice.

At the end of October, a friend of mine, Lynn Flower, went to a hospital in Glasgow with her sister, who is waiting for a heart transplant. They gave her all the information about the transplant but said nothing about the risks until Lynn, who is a headteacher, asked about them. The doctor was quite flabbergasted and asked how she knew about that sort of thing and whether she was in the medical profession. He just said that it was something to be aware of. There is just not enough information.

Thank you very much for coming along and presenting your petition. I think that you are providing a great service to the Scottish Parliament, because it is certainly the first time that I have heard about this issue.

I understand that the transplant operation took place about eight years ago.

Yes.

What kind of follow-up support and provision did your partner have in that time? Were there, for example, any clinics for checking out skin problems and the like?

If I recollect rightly, post-op she would go fortnightly to have blood taken to check her renal function, that her body was not rejecting the new kidney, and that the kidney was working properly. It was. To all intents and purposes, the operation was a success. Her clinic visits were then reduced to every four weeks or six weeks to check blood levels and that the kidney continued to function. However, no aspect of those consultations was to do with skin checks or that sort of thing.

Sharon got her tests done at Monklands. If there were any problems, they would phone her and she would go back up there and get them done again.

So everything was done within the Monklands area. There was no reference to consultants elsewhere.

She was originally in Glasgow but then—I cannot remember the exact date—NHS Lanarkshire established the renal clinic at Monklands. It might have been one or two years after her operation. She transferred there because we lived in Lanarkshire.

She was in Stobhill hospital.

Yes. She attended Stobhill hospital prior to the operation and the surgical team was at the Western infirmary in Glasgow.

I find it astonishing that there was no proper communication between the experts in the field and that NHS Lanarkshire did not have a suitable unit set up for that purpose. I understand that it is now setting up such a unit. Is that a consequence of your experience and how you have followed it through?

I would hazard a guess that NHS Lanarkshire would officially say no to that but, in my opinion, our case is certainly a contributing factor.

I am sorry to have to draw things to a close; I am afraid that we are a bit short of time. I have just one question for you to clarify. You said that you wrote to Nicola Sturgeon when she was health secretary. When was that?

That would have been back in August.

Thank you.

This is a sensitive issue and you have brought an important petition to us. It is important for the committee to continue the petition and ask for the views of various organisations such as the Scottish Government, NHS Scotland and NHS Blood and Transplant. Do colleagues have any other suggestions?

I suggest that we write to the BMA, and individual health boards about the patient advice that they give to pre-op and post-op clinics. Could we also write to the melanoma society for its views?

Are members happy to continue the petition?

Members indicated agreement.

I thank the witnesses for coming along. As you can hear, we are taking a great deal of interest in your petition. Our officials will keep you in touch with how it is going. I know that this must have been a painful event for you; thank you so much for giving up your time.

10:43 Meeting suspended.

10:44 On resuming—

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People’s Charter (PE1452)

Our third new petition is PE1452, by Vince Mills, on the people’s charter. Members have a note from the clerk and a SPICe briefing on the petition. I welcome to our meeting Elaine Smith MSP, who has an interest in the petition.

I also welcome our witnesses, Vince Mills and John Foster, and thank them for coming along. I will ask Mr Mills to make a short presentation, of around five minutes, after which Elaine Smith can make some supporting comments. I will then ask a couple of questions before I ask for further questions from colleagues.

I thank the committee for inviting us to present evidence here today. I will briefly set out the aims of the people’s charter and explain what we hope to achieve by petitioning the Parliament.

The people’s charter should be seen primarily as a response to, and a refutation of, the politics of austerity. The charter outlines six key areas where we need to build a better life for the vast majority of the Scottish people. Those areas include: expanding the economy; creating more jobs; building decent homes; delivering good public services; and bringing about more equality and peace. The supporters of austerity will give us: recession; fewer jobs; poor services for the poor and decent services only for the rich; and greater inequality and continuous conflict. We would argue that that is precisely what is happening throughout Europe and the UK at present.

The people’s charter is non-party political. It seeks support from people across all parties and all sections of society. The charter fully supports the “There is a Better Way” campaign of the Scottish Trades Union Congress, which also supports the people’s charter. We can therefore speak with some confidence when we say that we have the support of the organised labour movement in Scotland.

On cuts in public expenditure, the people’s charter is absolutely clear that it opposes all cuts, whether they come from Holyrood or Westminster and even if they are delivered more slowly and less deeply than those that are currently being driven through by the UK Conservative and Liberal Democrat Government. We believe that the financial crisis that we are experiencing is the fault of profit-driven financiers, not ordinary people. Therefore, the majority of the Scottish people should not have to pay the price for the financiers’ greed. Instead, increased taxation and growth through increased public ownership and public spending are fairer ways out of the crisis.

The specific measures that we suggest in the petition are examples of the kind of things that the Scottish Parliament could do to reverse the politics of austerity and inequality; they are certainly not an exhaustive list. On housing, for instance, we believe that there is a real need to go beyond the measures that we have suggested in our petition as a matter of some urgency.

We have produced a document, which I believe the clerk has passed to committee members. In that, we have listed the committees that we believe may be able to take forward our proposals. We hope that the Public Petitions Committee will decide to forward our demands to those committees.

Thank you for listening. We will do our best to answer any questions that you may have.

I thank the convener and committee members for allowing me to attend and to say a few words in support of PE1452 on the people’s charter. I should start by declaring an interest as a member of the Scottish organising committee of the people’s charter. I am also a member of Unite the union.

I commend the people’s charter organising committee on bringing the petition to the Scottish Parliament in this way. I note that the charter has the support of many of Scotland’s trade unions as well as the STUC. The six demands are not radical demands but provide simple and achievable steps to start putting people first, before profit-driven financiers, at this time of austerity. The charter provides a commonsense approach that would allow us to move from arguing about whose cuts are the most vicious to instead concentrating on delivering more public sector building projects, creating better jobs and tackling poverty and inequality. The alternative to that seems to be unemployment, cuts and more despair.

As the people’s charter representatives have said, the petition gives specific examples of practical measures that the Scottish Government could take, which the various parliamentary committees could perhaps look at in more depth. Once again, I welcome the petition’s arrival at the Parliament and thank the committee for its consideration of it.

Thank you very much. On a technical point—I am not prejudging the committee’s decision later on—we can refer the petition only to one other committee, so we cannot refer it to five different committees. However, not to worry, as we will discuss that later.

Obviously, I congratulate the petitioners on the work that they have done on the people’s charter—I think that the petition includes 1,000 signatures collected offline to date. For the record, I attended one of the earlier people’s charter events and I am a member of Unison, which has signed up to the charter.

Mr Foster should feel free to add his contribution at any stage.

My first question is on the suggestion about social impact assessments for procurement, which I found quite interesting. Can you say a little bit more about how those might work in practice?

Sorry, convener, which number is that?

The suggestion is that, in the public sector in particular, there should be an assessment of the social impact of procurement decisions at each stage. That is mentioned in paragraph 5 of your letter.

Do you mean in reference to local authorities?

Yes.

Nowadays, this issue tends to come under the term “needs budgets”, which is why I was a bit slow in responding to you.

Essentially, our concern is about the downward pressure on local authority budgets that has existed for some time. There are a number of reasons for that pressure, including the council tax freeze and the UK budget cuts. We think that it is important that local authorities make it clear to the wider public the implications of those pressures on what they need to spend, as opposed to what they are able to spend, so that people can make a proper assessment of the impact of the reductions in local authority budgets on local services.

My final question relates to the interesting comments on employee participation, which obviously has a long pedigree. When we took evidence previously from trade union colleagues and academics on employee involvement in the public sector, they highlighted how, although in one sense everyone talks a good game about employee participation, there is a great danger of having a very top-down management model in the public sector. Can you say a little bit more about employee participation and how that would work?

I am happy to do so. We argue that employee participation should go beyond the public sector. Back in 1975, the Bullock report argued for what would now be seen as a fairly radical model whereby overarching boards, with 50:50 representation from management and unions, would run enterprises. That is the kind of radical solution that we hope the Scottish Parliament might want to explore. Of course, that is not the only form of economic democracy. For example, trade union ownership of pension funds and worker ownership of company shares would also be within the compass of the proposals that we think should be considered.

Mr Foster, do you have anything to add?

On that subject, I would simply reiterate what Mr Mills has already said. However, I would like to make a contribution on housing at some point.

Good morning, Mr Mills and Mr Foster. Having read your proposal and your petition, I have some difficulty because the things that you have listed, such as fairer jobs, are what get me up in the morning. Personally, I agree with more employee participation; in fact, I effectively introduced that into some of the companies where I was a troubleshooter before I came to this place. I am sure that the charter’s proposals are well meant and well intended, but on a personal level I struggle to see how, in a democracy in which we have an effective Opposition, those points are not already being raised. For example, I am also a member of the Economy, Energy and Tourism Committee, which has heard Stephen Boyd make similar points. I struggle to see where the charter is different from what we do in electing Governments and Oppositions, which raise those issues under the democratic umbrella. Where is it different?

I think that you are making the easy assumption, which can be challenged, that political parties necessarily represent what the vast majority of people believe in. For example, it is clear that the trade unions—

But that is what elections are about. People stand at elections and go through the democratic process.

That may be what elections are about, but you are making the assumption that political parties represent what the electorate demand.

I am not making any assumption, Mr Mills. I have been through the process—

If you are not making that assumption, the question that you asked does not make sense.

Okay, you go ahead and say what the assumption is.

The assumption is that there is a direct relationship between what political parties argue for and what the electorate want. However, the clear evidence of the people’s charter—which the STUC supports—is that political parties are not arguing for those things.

I beg to differ. As I said, I get up in the morning to try to make these things better for our fellow citizens. If you like, I am trying to follow a people’s charter, believing in what people need and want. Where are you different from the democratic process?

It is a question of broadening democracy, not narrowing it. I do not accept that you are advocating these things. For example, do you advocate bus regulation?

If there is an issue with that and with the policy that we set, and the Opposition agrees that there is, it can raise questions through the democratic process.

My point is that there is clearly a democratic breakdown, because despite the demand for the kind of thing that I indicated, there is no evidence of it being dealt with properly in the Scottish Parliament.

There are some economic issues, which I will not go through, regarding arguments that we have had about funding and so on. However, there are clearly sets of priorities. You are trying to have an add-on to the democratic process, but if Oppositions and Governments are working effectively—I repeat that that is why I get up in the morning and come here—I do not see the value-added of what you want.

If there were absolutely no other social pressures on political parties that shaped the policies that they advocated and there was a direct line between political parties and the electorate, I think that your argument would be sound. However, given the number of pressures that exist—for example, I note that through Neil Findlay the Parliament will explore the issue of lobbying—and the fact that political parties are obviously also shaped by interests other than the democratic one, it is not valid to argue that the Scottish Parliament deals absolutely democratically with all the issues that are of concern to the Scottish people.

I disagree. In terms of—

May I just come in on this? I think that one of the great strengths of the Scottish Parliament—certainly in its original vision—was the extent to which it responded to civic Scotland. It saw within the horizon both the political parties and civic Scotland, including the trade union movement, which it regarded as an important part of the democratic process.

On the specific issue of employee participation, I think that you would agree that that has not in any way been taken forward with the effectiveness that it should have been—

In your opinion.

In my opinion, but I would have thought possibly in your opinion too, because you argue that you have to push that. We all know of structures of employment that are certainly not fulfilling those perspectives, to the great detriment of the employees and probably the overall functioning of the institutions, too. For that reason, I would have hoped that you would have welcomed on this issue—and on others, perhaps—the extent to which the organisations of civic Scotland have supplemented the pressures to take the issue forward.

Yes—civic Scotland and the trade unions all play an important part, which is why we try to have an open Parliament, with meetings like this and witnesses at other committees. Is it perfect? No. However, I still question what the value-added would be of having the charter in relation to the engagement with civic Scotland and our political process. The charter is well meaning—I am not demeaning that—but I do not see where it would add value. Of course, it would add value because input from everybody is important. However, in terms of enacting the charter’s demands—I will repeat this, then stop—what gets me up in the morning are the issues of jobs for people, a fairer economy, reducing the income gap and participation, even within the economic constraints that we have.

I welcome the petitioners to the Public Petitions Committee. I declare an interest in that I was a signatory to the charter and I have known the petitioners for a few decades, or perhaps slightly longer.

Various issues have been raised in the present discussion. For example, in relation to John Foster’s comment about the Parliament being more open to the people, Chic Brodie made the point that the Public Petitions Committee is a commitment to that openness because it allows individuals and organisations to submit and speak to petitions.

Irrespective of my membership of a particular political party, I am generally supportive of all the objectives in the charter. However, I think that there are issues around the political party element, because I do not think that any political party has fully signed up to the charter. Individuals from the political parties have signed up to it, but I am not aware of a political party that has done so.

11:00

I have a couple of questions on the charter objectives. Section 2 of the original written submission refers to “More and better jobs” and makes the quite laudable comment, “Reduce hours, not pay.” We should not reduce hours and reduce incomes. However, you also talk about a minimum wage of half the national median earnings. Can you remind me what the national median earnings are at present?

No, I cannot.

We are focusing on the specific suggestions that we made in the petition today rather than the overarching petition to which you were referring, which was not really the subject of this particular discussion.

I am trying to explore that point in the light of the Scottish living wage campaign—the Scottish Government and the majority of the parties in the Parliament have accepted the Scottish living wage objective of £7.45 an hour. I am trying to put that in the context of median earnings in the UK. From my rough calculations, the minimum wage is unfortunately about half the national median earnings but clearly it is not enough of an income to satisfy the basic needs of the majority of people who are on the minimum wage.

I know that John Foster is interested in housing, particularly social or local authority housing. In the past five years, the Scottish Government has attempted to reinvigorate the social rented housing market and has openly encouraged local authorities to build council housing, which had been diminishing for about a decade. Local authorities are now increasing their stock, unfortunately at a time when stock is being sold off under the right to buy. Can we generate enough of an interest among local authorities so that they use their borrowing powers to increase council housing stock throughout the country, bearing in mind that Glasgow has no housing stock because it transferred the stock to Glasgow Housing Association a number of years ago?

A number of other local authorities have unfortunately done something similar. However, that avenue could certainly be adopted and the people’s charter would support local authorities that went down that road.

A key issue is the immediate and long-term impact of the housing benefit changes on the viability of the entire social housing sector—both local, community-based housing associations and council housing. In Govan, where I am involved in the community council and I am secretary of the tenants association, the future viability of the three local community-based housing associations is seriously threatened by the changes in housing benefit regulation. In particular, it is threatened by the so-called bedroom tax, whereby there will be massive cuts in housing benefit—up to 25 per cent for having two unoccupied bedrooms and 14 per cent for having one unoccupied bedroom. The three housing associations in our area estimate that around 500 people will be in that category and will find their housing benefit cut to that degree within the next 12 months. It is an urgent problem for them.

We have also been faced with a cap in housing benefit of 1 per cent that will be imposed from April next year. In terms of the overall population on housing benefit, that will generate deficiencies in the ability to pay rent, resulting in evictions of around 5 or 6 per cent within a couple of years because of the increase in rents.

Those are big problems for the whole social housing sector and they are very serious problems for tenants. A meeting that was held a couple of weeks ago in Govan was attended by almost 100 people. People are being told that they will be evicted if they cannot pay the rent. There are not enough one-bedroom or two-bedroom houses within the social sector and very large numbers of people will be affected.

That is an immediate issue. One of the aims of the people’s charter for Scotland is to say that the Scottish Parliament has certain powers and a certain amount of financial resource—although not very much—but in some areas, it can use those powers to the benefit of people or at least, in the current circumstances, to prevent great hardship. We propose that, in place of eviction, Scottish housing law should be amended to enable the normal course of debt collection to kick in rather than automatic eviction for significant rent arrears in the case of the bedroom tax.

We also suggest that consideration should be given to rent regulation for the private sector. In Glasgow, one of the certain consequences of the new regulations—they have not been thought through at all, and I am sure that this applies in other cities and areas, too—is that people will be forced into the private housing sector. When people are evicted and become homeless, there is not enough accommodation in the social rented sector so they will be forced into the private sector.

Inquiries by the Scottish Parliament have shown that the private rented sector is extremely uneven in the way in which it practises any care for tenants. There are areas in which landlords are totally unscrupulous and in which we can expect rents to be pushed up. That is why we argue that the Scottish Parliament has powers over housing legislation that would permit the regulation of rent, and a cap on rent increases that could be in line with the 1 per cent increase in housing benefit and which would offset the ability of unscrupulous landlords to exploit the situation.

Those are our two specific proposals.

Thank you for that explanation of your proposal.

You opened by talking about the welfare and benefits reforms that Westminster is pushing through. The Scottish Government can make changes that will protect only to some extent tenants and other people who depend on public or private sector housing. The main issue is the raft of draconian welfare and benefits reforms that are coming out of Westminster. Housing is one of the areas in which we can see that the levels of rent benefits that could be paid to individuals could be capped and further capped under Westminster’s present system.

Apart from the changes that you have suggested, how do you think the Scottish Government could protect people from the worst excess of a Westminster Government that is following a policy of massive public sector cuts as well as cutting benefits, all of which will impact on many citizens? The figure that is being quoted is something like a £2.5 billion loss of income for the Scottish economy as a result of the welfare reform proposals that are coming out of Westminster. How can the present or a future Scottish Government protect individuals against a Westminster Government that has the fiscal powers to impose such benefit changes?

I suggest that some limited measures could be taken. They were discussed at the meeting in Govan, which was attended by a minister of the Scottish Government and the leader of the Labour Party in the Scottish Parliament. One of those measures was the creation of two funds. The first is a fund that can be made available for acute emergency cases of tenants who are unable to pay their rent; the second is a fund that should be made available to assist housing associations that will find themselves in extremely difficult financial circumstances in a year or two. Those are two practical proposals. Obviously, they are limited by the funds that are available to the Scottish Parliament, but they could be followed.

On the overall question, obviously it is a matter of finance. Again, that is a matter for wider debate.

Members will be aware that Parliament has a Welfare Reform Committee. One option is to refer the petition to that committee at some stage.

Indeed. Mr Mills and Mr Foster have raised a number of salient issues so far. It is clear that we could debate them for the rest of the day—and, possibly, all night.

I would like to pick up on a point with Mr Mills. Public transport is mentioned in paragraph 4 of the late submission and bus regulation was thrown in a wee while ago. The figures that I have been provided with suggest that it would cost up to £1 billion to renationalise or reregulate bus services, so it is clear that we have a funding issue. A wish list is all very well—I have a lot of sympathy for that—but if the money is simply not available, that creates a difficulty.

Paragraph 3 of the late submission mentions housing in particular and the concern

“about the lack of social housing”.

When I was a Falkirk Council pension fund governor, we initiated investigations into the possibility of using the innovative measure of building social and affordable housing through the pension fund, which would have ticked a lot of boxes. It would have given the pension fund a guaranteed rate of return and would have provided badly needed social housing, which is particularly needed, with up to 8,000 people being on the waiting list in the Falkirk area. What are your views on using pension funds, in particular local authority pension funds, for that purpose? Are you keen to support that approach?

On regulation, I do not have the figures to which you referred, obviously, but the buses currently get a substantial public subsidy. If you are talking about taking bus companies into social ownership—which is not what we are advocating as regulation—I assume that there would be considerable savings to be made over a long time.

Such initiatives would be welcome. They are limited and relatively small scale, but there could be productive results from them in terms of providing more social housing. However, on the people’s charter’s objectives at Britain level, we would certainly argue for creation of a new type of financial and banking system that would be under the public sector’s control and which would therefore be able to channel funds towards infrastructure projects on a much larger scale. That is one avenue by which to solve the Scottish housing problem. It is an expensive problem, but one that it is absolutely necessary that we tackle in the long run.

I believe that pension funds were used perhaps 50 years ago, so we are going full circle.

Rent regulation was also used.

I welcome the panel and declare an interest in that I have signed up to the people’s charter and its aims.

I want to pick out paragraph 6 of the late submission, which mentions credit unions. Given that the convener and deputy convener of the cross-party group on credit unions are sitting at the table, perhaps we could take the issue back to that group to see how we could extend what credit unions do.

Given the array and complexity of the issues that the petition raises, it might be better to refer it to the Welfare Reform Committee, which the convener mentioned, rather than the other committees that have been discussed, in order to provide a better scope and listening approach.

11:15

We would welcome that. I am pleased that Anne McTaggart has picked up on our point about credit unions. As has become painfully obvious, people—especially those in low-income paid employment—are increasingly finding that they need to borrow money at unfavourable rates and sometimes from unsavoury lenders just to survive, so I appreciate that.

We are a little bit short of time. Do any other members wish to contribute?

I have a brief question. What engagement have you had with local authorities? It might surprise you to know that one local authority that is known to me underspent its budget by £7 million last year and had £4 million left after provisions and reserves.

Have you engaged with local authorities to understand their financial position and how some of those programmes might be implemented?

We have engaged principally with the trade unions that represent the local government workers. Consequently, the perspective that we are putting forward—and which we share—is that of the local government workers.

I do not know to which authority Chic Brodie referred, but I assure you that the trade unions would be most upset about an underspend of that magnitude, given that so many local authorities are currently cutting staff and services.

The trade unions are not the only ones who would be upset.

Colleagues have no more questions.

There are a number of options. Normally at this stage, we would ask for more information before taking the next step. Members will recall my initial statement that we cannot refer the petition to more than one committee. Our petitioners have rightly identified a number of committees, and I also identified the Welfare Reform Committee, which would pick up Mr Foster’s point about housing.

I ask Anne McTaggart to clarify whether she was talking about a separate committee.

No. I was referring to the Welfare Reform Committee.

We could continue the petition and ask the Scottish Government for its views. When that information comes back, we can make a decision about next steps. Alternatively, we could refer the petition to another committee now. I am in the hands of the committee and am quite relaxed about next steps.

I support continuing the petition with the Public Petitions Committee at present and writing to the Scottish Government. There are a number of other organisations from which I would like to seek opinions in relation to the issues that the petitioner raises. I highlight the Scottish Council for Voluntary Organisations, given the issues around cuts in pay and conditions in the voluntary sector, which we know has, in some parts, been hardest hit by the current recession.

I suggest that we also write to the Scottish Federation of Housing Associations to ask for its views on housing issues; the Chartered Institute of Housing in Scotland, once again to ask about housing, particularly in the private sector because CIHS—believe it or not—sometimes represents private landlord interests as well as other interests; the Confederation of British Industry Scotland; Community Business Scotland Network Ltd; and last, but not least, the Convention of Scottish Local Authorities.

If there are no additional suggestions for organisations that we should write to, are members happy with the suggestions from me and John Wilson?

Members indicated agreement.

It is unanimously agreed that we will continue the petition and write to those bodies. When the information comes back, we will consider our next steps. The petition will remain active until our next appropriate meeting, which will be when we have the information back.

I thank Elaine Smith for coming along and supporting the petition, and Vince Mills and John Foster for giving evidence. The petition is very thoughtful. We will keep it live until we get all the information that we require.

11:19 Meeting suspended.

11:20 On resuming—

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Mutual Repairs Incentive Scheme (PE1444)

PE1444, by Florance Kennedy, is on the mutual repairs incentive scheme. Members have a note by the clerk, the SPICe briefing and the petition. I invite members to look at this interesting petition. To my mind, it makes a lot of sense to continue the petition in line with action point 8.1 in the note by the clerk, which would mean our writing to the Scottish Government, the Royal Incorporation of Architects in Scotland and so on. I am open to alternative views from members on that. Do members agree to continue the petition in line with action point 8.1?

Members indicated agreement.

I do not know whether I am on the same petition. Is it PE1444?

Yes.

The petitioner has asked that we make representations to the UK Government as well, which is not covered in the clerk’s advice. I suggest, in the light of the decision to add VAT to repairs, that we write to the UK Government to ask what assistance can be given to residents of tenement properties.

Yes, because there is a particular issue around VAT. That is a good point. Do we agree to write to the UK Government as John Wilson suggests?

Members indicated agreement.

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Protection for Landlords (PE1447)

PE1447, by Gerry McLellan, is on protection for landlords. Members have a note by the clerk, the SPICe briefing and the petition. I invite members to consider the petition and to make recommendations about next steps.

We should contact the Scottish Government about the petition, as suggested. It would also be relevant to contact other bodies to ask for their views—in particular the Chartered Institute of Housing in Scotland, the SFHA, and the Scottish Association of Landlords.

Thank you. Do members agree with John Wilson’s suggestion?

Members indicated agreement.

There are no other suggestions, so we will go ahead with action point 9.1 in the note by the clerk and ask the Scottish Government for its views. We will also contact the other bodies that were suggested by John Wilson.

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Planning (Protection for Third Parties) (PE1461)

The sixth and final new petition is PE1461, by William Campbell, on protection for third parties in the planning process. I record that I know Mr Campbell and have made representations on his behalf in the past. Mary Scanlon also has an interest in the petition. Would you like to address the committee?

Thank you, convener. I am grateful that you have allowed me to come in at this point. Like you, convener, I have known Mr Campbell for many years. Paragraph 3 of the clerk’s note says that

“The Scottish planning system works on the assumption that all parties ... operate freely and without any malign influence”.

That is a reasonable point.

However, I really want to draw committee members’ attention to paragraph 5 of the note, which states:

“Issues such as bullying and harassment of third parties cannot, at present, be considered by a planning authority as part of the decision making process as they do not relate to the development or use of land.”

That is also a reasonable comment and I do not think that we could disagree with it. My concern is that allegations—that is all we can say at this time—of bullying and harassment, if they exist, can enormously affect the number of objections, which play a significant part in planning authorities’ decision making. My concern is that although bullying and harassment cannot be taken into account by councillors who are making the decisions, the absence of objections could have a significant effect. My other point is that if people withdraw from the planning process because of bullying, harassment and so on, we no longer have a democratic system.

Many people think that those who adopt the “Not in my back yard” approach and make objections are being critical and destructive. However, I know—I am sure that you do, too, convener—that many people object because they want something that is not so big and is more in keeping with the area. Many objections are constructive and positive. My worry is that fear of participating will be detrimental to the whole planning process.

Paragraph 7 of paper PPC/S4/12/18/6 describes the conduct that

“might be described as harassment”

that

“can be prosecuted under Scots law as a breach of the peace.”

It is one thing if someone who lives in a major city does not talk to their neighbour because that does not really matter, but for someone who lives in a Highland glen or a village, their neighbours are very much part of their life, and people do not want long-lasting feuds.

Another problem—I have spoken to the police about this—is that it is one person’s word against that of another. I am no expert on the law, so I am not saying that there is no law that covers the situation, but it is difficult to say, “Oh, someone came to my door last night and persuaded me to take my name out of an objection.” Many people do not want to put their head above the parapet in order for their neighbour to be prosecuted. I wanted to point out that, in small rural areas, such situations cause much more difficulty than they do in major cities.

Those are all the points that I wished to raise, having spoken to the petitioner over many years. Like you, convener, I know him and his family.

For clarification, is it your view that we continue the petition and write to the Scottish Government to seek its views?

I realise that I am an outsider to the committee, but I would be comfortable with that approach so that some of the issues that I have raised can be addressed. However, I appreciate the difficulties.

I have a concern. It is a two-way process. I know of circumstances—I have been involved in one case—in which someone has objected to planning permission in the most vociferous terms and the council put that information on a website. We must be careful when we proceed with the petition because harassment can work two ways.

I accept Chic Brodie’s point that harassment can work two ways. I have recent experience of a person who made a planning application in a rural area harassing a neighbour to the detriment of the wellbeing and normal life of the individuals who had objected to the planning application. There are serious issues about how applicants and objectors are protected under the current planning legislation. Although the petitioner and Mary Scanlon are right to say that the planning authority should not take account of any issues apart from what is in front of them that relates to the application and the objections, the difficulty is that many individuals face intimidation and harassment and, in some extreme cases, violence from applicants or objectors. We need to look at that in progressing the petition.

As well as writing to the Scottish Government, I suggest that we write to the Association of Chief Police Officers in Scotland, COSLA and Planning Aid Scotland to get their views on the petition. There are omissions from planning legislation that might need to be considered to ensure that everybody—applicant or objector—has the opportunity to express their views freely without fear of intimidation, harassment or violence.

That is a reasonable approach. Do members agree?

Members indicated agreement.

We will continue the petition and write to the various agencies that John Wilson mentioned, as well as to the Scottish Government in the terms that are outlined in paragraph 10.1 of the paper.

I thank Mary Scanlon for coming along and helping our consideration of next steps for the petition.

I thank the committee for the opportunity to speak.