New Petitions

Petition PE1108, by Tina McGeever, on behalf of Michael Gray, calls on the Scottish Parliament to urge the Government to consider the provision of cancer treatment drugs, in particular cetuximab, on the national health service, to ensure equity across NHS boards in determining the appropriateness, effectiveness and availability of such treatments. I welcome Tina McGeever, the petitioner, Michael Gray and George Darroch.I have two things to say. First, you will see that a trinity of MSPs has joined us for the petition. I normally worry when I see the three of them walk into a room when I am chairing a meeting. Obviously, they were contacted about the petition both at a constituency level and in general terms. Secondly, I have received a note from Richard Lochhead, who—wanting to rub it in—says that he is at a Cabinet meeting. Richard expressed an interest in the petition, and had hoped to contribute today if he could possibly do so, but because of pressing Government business he cannot. I welcome the MSPs who are not committee members to the meeting.I invite Tina McGeever to make her opening statement. You have three minutes.

Thank you—I know that the subject is difficult for you, but you did exceptionally well.Without being too intrusive, I want to clarify some issues for my benefit. Our information is that the average cost of a cycle of your husband's treatment is nearly £4,000. Is that correct?

And the required treatment is four cycles.

Right. So you are talking about a fairly onerous charge to get the treatment privately, and it is on-going. The figure for one cycle would be big for any household to deal with, never mind that the cost is on-going. That is probably why the maintenance of a full-time job is required, given the circumstances.

The brutal reality has to be amplified for the committee's benefit.Several members of the Parliament who are not committee members have expressed an interest in the issue. I am not sure whether there has been an agreement about who will go first, but I invite Peter Peacock to begin.

I am grateful to you, convener, for allowing me to speak. Michael Gray has been in touch with me, because he lives in my region. However, as has been mentioned, Richard Lochhead and other regional members have supported his case. I got to know Michael Gray only comparatively recently, and I must say that it has been a very humbling experience. In recent months, he has sent me and other members copies of all his correspondence with the health board. I have seen the colossal effort and energy that he and his family have expended on arguing his case with the health board. Frankly, at his stage in life, that effort could have been better spent on a variety of qualitative measures, rather than on having to fight in that manner. The process that he is having to go through to obtain a decision of the health board under an exceptional circumstances clause in the procedures would be extraordinarily challenging for the fittest of people. It requires real grit and determination, as well as an understanding of public systems and the ability to be articulate and forceful in pleading what is a case for extending his life.We must learn lessons from every case that comes before us. I do not doubt for one minute that there are complications and difficulties in making judgments about people's medicine in such circumstances. However, we must learn the lessons from the case, which raises questions about how we respect human dignity. I find there to be something degrading about, in effect, requiring a man to go with his family and plead in front of a committee of 10 people for a drug that he knows will extend his life for what is, by all standards, a fairly moderate period. That is notwithstanding the fact that his consultant has decided, based on the clinical evidence and his judgment, that the drug is the right one for Mr Gray at this stage of his treatment.Tina McGeever made the good point that only because Michael Gray and his family can, at present, fund his treatment privately have they been able to prove that the treatment has a beneficial effect on him. That has allowed him to make his case to the health board about the exceptional circumstances that justify funding the treatment. It is self-evident to me and, I am sure, to other members that not everybody in Scotland could fund such care to prove a case that they deserve a drug on clinical grounds. That is an issue of principle.Both Tina McGeever and Michael Gray have highlighted the apparent inconsistencies in the treatment of terminally ill patients in the health service. The committee might want to ask questions about that. I am sure that Tina and Michael can answer them better than I can.Perhaps the main focus of the petition is equity of treatment among health boards in Scotland. It is theoretically possible that, if Michael lived 30 or 40 miles to the west of where he currently lives, he would not have had to go through the same procedure, because the health board's decision might have been different. I cannot state absolutely that it would have been different, but there is scope for that—I understand that an adjacent health board and others in Scotland prescribe cetuximab.It is a question of basic equity. Depending on where someone happens to live, where they happen to have been born or where their job happens to be when they become ill, they might not receive treatment that they would receive elsewhere in Scotland. For all those reasons, I am delighted to support the petition, and I hope that the committee will give it full consideration.

I am aware of the sensitivity of the petition, so if other members want to say anything, this is the best time to do it. It is not normal practice, but it is appropriate, given the nature of the petition.

Thank you, convener. I appreciate the opportunity to contribute. I should explain that I am here in slightly different circumstances. Mike and Tina have been good friends of mine and my family for more than 20 years. That is the background against which I speak today. Having said that, I think that it is important that politicians and the system hear a personal view of what a family is going through and its impact on their friends. One dimension of the case is that Mike and Tina have experienced an unfriendly and distant health service. It is incumbent on us all to understand that.From the petition flow many important issues that are telling for us all in Scotland. As Peter Peacock said, decisions about drugs—particularly for someone at Mike's stage—are difficult. We all know about finite resources and how difficult decisions can be for health boards. However, Mike and Tina's experience has thrown up a considerable range of questions about how such decisions are taken, and they must be addressed.There is no big party-political divide on the issue—we are all trying to grapple with the same problems—but I have asked a number of parliamentary questions, the answers to which seem to suggest that we do not have proper systems in place. There are certainly questions to be asked about how we take forward the issues.I am trying to say to the committee merely that I think that a range of questions and issues need further exploration in the Parliament. Tina and Mike have done us a service in raising the issues because, with the greatest respect, I do not think that their case is a one-off. Other families will be struggling in a similar way, and we desperately need to learn from what Tina and Mike have gone through to prevent it happening again.

I hope that our colleagues on the committee will listen carefully to what the petitioners have said and will say in response to questions and to what members have said. I hope that they will support the petition and push the Government to consider the serious issues that it raises.Let me put on record and pay tribute to what Peter Peacock has already referred to: the colossal effort of Michael Gray and Tina McGeever and their family and friends in bringing such a serious issue to the Parliament. I became involved when the family and friends of Mr Gray who reside in Glasgow Anniesland approached me on the provision of cetuximab. I asked the Cabinet Secretary for Health and Wellbeing a question on 15 November 2007, and I followed that up with a letter.The points that the petitioner has made all demonstrate the need for greater transparency and accountability on the part of health boards. Additionally, I believe that there is a need to develop a uniform framework across health boards that allows for greater flexibility of approach, so that the provision of cancer treatment drugs on the NHS is more equitable and, above all, more humane. The bottom line is shown in what the cabinet secretary, Ms Sturgeon, said when the issue was raised in the chamber: treatment should not be linked to funding. I ask the Public Petitions Committee to agree with the points that the petitioner is making and to do its utmost to press the Government to ensure that we do what is necessary to create a more equitable and humane system.

Thanks very much. I know that it is unorthodox, but I thought that, given the personal and emotional circumstances, it was appropriate to allow members who are not members of the committee to contribute.Committee members will now want to probe the issues.

Thank you for the presentation. The issue obviously is difficult for you.The petition mentions that you also have to pay for the associated chemotherapy that goes with cetuximab, although that chemotherapy is routinely available on the NHS free of charge. Can you explain why that is, and tell us the cost of the associated drugs, which are usually available free of charge?

Can I clarify the figures? You said earlier that a cycle of treatment costs about £3,400.

Of that, £682 is for the drug.

I am having difficulty getting to grips with the matter. You pay about £2,800 for treatment that would be freely available on the NHS if you were not using cetuximab.

So it is being said that, on the basis of £682 a cycle, the issue is cost, and they are not willing to—

If the rest of the treatment costs so much more than cetuximab itself, I cannot understand why it is being refused on the basis of cost.

Essentially, Michael presented to the NHS with an illness. The drug that is most appropriate for him is drug X but, because the NHS will not prescribe it to him, you have gone private, and therefore the associated and support costs that would have been met for AN Other drug, which would have been seen as acceptable, have been denied to you.

So when you raise that point, amid all the other trauma that you are probably going through, what reaction do you get? Is the health board embarrassed about the situation? Is it in denial? Have 10 people had a meeting, then said sorry to you? Having read the briefing papers on the petition, it strikes me that it is an astonishing set of circumstances for any family to face.

So there is a pick-and-mix approach to selecting the drugs that the board can or cannot use.

That timescale is obviously reassuring for you, Tina.

We are fairly toughened characters here, but what we have received from you and what has been elicited in the discussion is quite shocking. It is hard, at times, to be shocked in this job, but members of the committee are shocked by the process, never mind the decision making. We really need to see if we can expedite matters. I think that we wish to take the matter forward. How do members feel? On behalf of the committee, I have to say that it is incredibly noble of you, Michael, to feel more concern about the many other folk, given the circumstances that you are facing. It is quite humbling for us to hear that, as you identified, other folk in Scotland have faced the same situation without any access to resources whatsoever, and they have probably passed away in the time that the petition has taken to come forward. We need to find the best way forward—using a combination of the personal and the bigger picture, as Margaret Curran identified—in addressing the principle of how we treat folk in the NHS and how we deal with the costs of drug treatment. I seek guidance from members of the committee, and from the members who have come along in support of the petition, on how we take the issue forward with reasonable speed, given the circumstances that the petitioner and his family face. Are there any strong views on that?

Given that you have funded the treatment yourself and that it appears to be working, has the board given any indication that it will fund further treatment on the basis that it appears to have been successful?

Would the board refund what you have already paid?

How do you feel about attending a meeting of a body that is called the exceptional circumstances committee? That is remarkably sensitive terminology for a discussion about your future.

I am conscious that other members have points to make. I will take some suggestions on what we want to do next.

I want to emphasise a point about the exceptional circumstances process. Like me and others, the committee has today had the benefit of observing how Michael and Tina conduct themselves. Michael is experienced in the public sector and understands issues of public sector policy making and decision making. He is prepared to stand up for himself and argue his corner in a reasoned way. As I said earlier, he now finds himself in the rather degrading position of having to go in front of 10 people to argue his case further. Huge numbers of Scots would never have got to stage 1 of the process, let alone the end of it.I do not underestimate the difficulties associated with prescribing drugs in certain circumstances, but whatever else the Public Petitions Committee does, it should ask that the decision-making procedures in question be looked at and, to an extent, humanised. It seems to me that people's human dignity is at stake. We must examine that issue, among others. I think that Margaret Curran has some specific suggestions.

I have been trying to get my head round some of the challenges that Mike's experience has brought to light. There are issues of time—I think that I am correct in saying that when Mike first asked for a decision, it took a month for someone to get back to him. That is extremely concerning, given that in his case time is of the essence.There are issues to do with the approach that Grampian NHS Board has taken. For example, it does not minute meetings or have definitions for certain things. Mike and Tina have had to fight to get basic information. There are also issues about the criteria for decisions, if such criteria exist. It would be pertinent to investigate all those aspects of the practice of Grampian NHS Board as they relate to Mike's case. With respect to my colleagues on the committee—it is your decision—I propose that it would be worth while to ask the Cabinet Secretary for Health and Wellbeing to investigate NHS Grampian as a matter of urgency. She could set up a mini task force or appoint a reporter to investigate.I am not sure how much of the problem is a failure of individuals and practice in Grampian and how much is a failure of the national health service. I tried to allude to that earlier. We all have some responsibility for things not happening properly. As I think Bill Butler will tell you in a moment, the drug is approved in Wales. If Mike lived in Wales, he would get the drug. As the Daily Record article pointed out some time ago, if he lived in any of a range of countries in Europe, he would get the drug. There are questions to be asked.I would not necessarily point the finger at an individual, because the issue is about SMC behaviours and practices. We need to understand that and consider what the issue is. We need a two-tier approach. One tier is the immediate issue of what is going on in Grampian, and the other is the broader issue of the availability of drugs for people in circumstances such as those that Mike is facing and how that is taken forward in Scotland. The latter is a broader issue for all of us to be concerned about.

Margaret Curran is correct to suggest that the committee should call on the cabinet secretary to set up a mini task force with regard to Grampian, but there is something else that should go alongside that. I hope that colleagues will find themselves able to suggest to the Health and Sport Committee that there should be an inquiry into the treatment of terminally ill patients throughout NHS Scotland, because there seems to be nothing that we would recognise as a framework and there is an absence of criteria that are applied uniformly, equitably and humanely.I am not trying to tell the committee or the Health and Sport Committee what to do, but I take up Michael Gray's point that evidence should be heard not only from the SMC but from the leading charity in the area, which is Bowel Cancer UK. Its director, Ian Beaumont, said:"Bowel Cancer UK is actively helping patients to gain access to effective treatments, including the newer biological agents … Proof of the efficacy and benefits of these treatments is growing all the time, particularly to people in the later stages of the disease, and we strongly believe they should be made more widely available on the NHS."Bowel Cancer UK is one of the organisations from which the Health and Sport Committee should take evidence, because there has to be a balance between the view that is espoused by NHS Grampian or the SMC and the view of those who are actively engaged in the field in supporting people who are going through a terminal illness.That is what I respectfully suggest to the committee. My suggestion sits alongside Margaret Curran's suggestion about a mini task force.

Let us move to some firm conclusions and try to progress the petition.

Two or three constructive suggestions have been made. One is that we give the Official Report of today's discussion and the background information to the convener and members of the Health and Sport Committee. We should let them know that we are concerned about the situation and that, although our natural instinct is to not refer matters to subject committees until we have explored them fully, we felt that this was a matter of some urgency and that it was important that it be dealt with as soon as possible.We also need to seek advice from Bowel Cancer UK and to write to NHS Grampian to say that we are concerned about a series of issues relating to this case, which we feel might be only one of a number of such cases. We should draw attention to the fact that, while Mr Gray has access to some resources that allow him to get the treatment, there will be hundreds of other people in Scotland who have no such resources and will be, in a sense, written off. I am deeply troubled by the term "exceptional circumstances", which is the sort of Orwellian phraseology that can mean whatever we want it to mean. The fact that Mr Gray has to go before that committee and almost plead for compassion is a ridiculous state of affairs, given his medical condition.

You have put a lot of work into that, Michael.

Will the committee press the cabinet secretary to investigate the matter?

Yes—happily.

There are issues to do with the clinical judgment of individual doctors. Obviously, Mr Gray's doctor has recommended a certain course of treatment, but he is being denied the opportunity to treat his patient as he would wish by people who are not clinicians. We should include that point in our letter to the health board, but we should also write to the Royal College of Physicians of Edinburgh and the Royal College of Radiologists because I think that their guidance on how doctors should operate is probably being overridden by administrators. I am not underestimating the problems that a health board faces in relation to new drugs, but this case involves something that has clearly been shown to work. We should also flag up another important issue, which relates to the conflict between the public and private elements of the treatment. When the vast bulk of the treatment is available to someone else on the NHS, why should the whole amount have to be privately paid for in circumstances such as Mr Gray's? I am not saying that dealing with that issue alone would make the situation more equitable. A huge number of people might be unable to obtain the sum of £600 for a course of medication. However, the current practice seems to put up barriers when people are trying to do something. If we could try to get a ruling on that practice, that might help some people, even if it did not help everyone.

A series of issues has been raised. I hope that the petitioners found this process more transparent than the process that they have experienced in recent months. We need to expedite the process at our end, not only because of the circumstances that the petitioners face, but because of the other people in Scotland who are in the same moral, financial and emotional dilemma.To our petitioners, I say that I know that this has been a tough shift at your end—it has been tough for us even to hear some of what you have had to express today—but I hope that you have found the discussion constructive. We will pursue matters with the various individuals and organisations that have been mentioned as quickly as we can. We wish you well in the coming period.

We will take a brief break.