Organ Donation

Debate between Mark Williams and Jonathan Evans

Wednesday 30th November 2011 Westminster Hall

[Mr Williams]

I am not going to give way to the hon. Gentleman. I will proceed because many others want to speak.

Members of the Select Committee on Welsh Affairs received the request for legislative competence on this matter, although mercifully that was superseded by the referendum result, which conveyed greater powers to the Welsh Assembly. That is why it is now able to proceed in the legislative way that it is. The debate has, of course, been triggered by the publication of the White Paper by the Assembly Government on 8 November, which proposes a soft opt-out organ donation scheme for Wales, with a view to that becoming fully operational in Wales in 2015. Both contributions we have heard this morning have acknowledged the tragically large waiting lists for donors: 10,000 people UK-wide, 500 in Wales. The wider public support was acknowledged by the hon. Member for Montgomeryshire.

It was also acknowledged that earlier committee work had been undertaken in the National Assembly, and the committee was not exactly ringing in its endorsement of a soft opt-out proposal, although it did not rule that out. The then Health Minister opened the matter to public consultation, and some 81% of respondents in 2009 indicated that they were supportive of a soft opt-out scheme.

Despite those statistics and the overwhelming public approval for a scheme, tragically only 29% of us have signed up for organ donation. There has been much mention of the international comparisons. I will not dwell on them, other than to cite again the comparison highlighted by the Kidney Wales Foundation. It looked at 22 different countries with opt-out schemes—not just Belgium or Spain—and found that over 10 years there was a 25% to 30% higher donation rate than for informed consent schemes. I appreciate what has been said about an evidence-based scheme, but we must not be selective in the evidence used. That is critical—we need to look at the whole picture.

I strongly contend that a soft opt-out approach must not be seen in isolation. The Assembly Government is not arguing that a soft opt-out scheme alone will work and do the job that we all wish to see. As the hon. Member for Llanelli (Nia Griffith) said in her intervention, we need to heighten publicity, which is absolutely critical. Initiatives such as the use of the Driver and Vehicle Licensing Agency, so that when people apply for a driving licence they are asked whether they wish to join a scheme, would play an implicit part in a soft opt-out scheme.

[Jonathan Evans]

Will the hon. Gentleman give way?

[Mr Williams]

I will carry on, because I am conscious of time.

Critically, the Assembly Government has also responded to the need to increase infrastructure to cope with transplants. It is clearly developing that: the transplant directorate of the University hospital of Wales in Cardiff is the only transplant organisation responsible for kidney and pancreas transplantation in south and mid-Wales. In March, £2.4 million was spent on the Cardiff transplant unit, which has been opened with a dedicated transplant team and with new recruits of surgical and nursing staff. The Assembly Government also committed £1.5 million to implement the recommendations of the organ donor taskforce. Infrastructure and public information, coupled with a soft opt-out scheme, is the key.

Finally, and critically, we need to address the ethical issue. The soft opt-out scheme has been described as somehow being ethically improper. I think that is probably the view—I hope I do not do him a disservice—of my hon. Friend the Member for Montgomeryshire. That view has certainly been expressed by the Archbishop of Wales. I would not dare to describe him in the glowing way that the hon. Member for Newport West did; I am a member of his Church, and I deeply respect the Archbishop of Wales. He has highlighted the issue of the relative power of the state and the individual.

As a Liberal—call me an old-fashioned liberal—I very much want to see the emphasis on individual choice. The hon. Member for Clwyd South (Susan Elan Jones) alluded to that point in her intervention. There will still be choice—the choice to opt into a scheme is still there. The archbishop’s article in the Western Mail stated:

“Organ donation…ought to be a matter of gift. If one takes organs without consent, on the assumption that a person is tacitly assenting by not opting out, then that is no longer a free gift to others. An organ donation ought to be precisely that…an act of love and generosity.”

I agree with those sentiments, but I do not accept that opting out in any way conspires against the spirit of generosity. That is where public information and the awareness issue are so important.

What we need to do, which is what the Assembly Government seek to do, is to extend that spirit of generosity so that it becomes the norm and so that the discussions that every family will have to have throughout people’s life about such matters are very much the reality. That puts the onus on the individual to make informed choices, and that should be highlighted. A point has been made about relatives and members of families. The soft opt-out option means—this has been made open to consultation by the Welsh Government—that there is a specific role for members of bereaved families, whose views will be taken into consideration.

I perhaps started this process as an intuitive supporter of soft opt-out. I remember going to a meeting organised by the hon. Member for Cardiff West (Kevin Brennan) earlier this year, when we met people who were waiting for transplant operations. There is a healthy impatience, certainly in the Assembly Government and among others of us, to see the issue resolved.

The hon. Member for Newport West talked about his constituency cases. One benefit of the House rising early yesterday was that I was able to watch a little more television than usual. I watched an excellent documentary last night about a young couple from Exeter: 21-year-old Kirstie has been waiting several years for a lung transplant. She struggled through her teenage years, and she even struggled through her wedding day while being unclear whether she could actually survive the day. The highs and the lows—the highs were that on two occasions she received telephone calls saying that a donor was available; the lows were realising that the donor was not appropriate. Miraculously, as she reached the end of her life, a suitable donor was found, and Kirstie is now recovering and enjoying an increasingly full life. Sadly, many of our constituents are not so lucky, which is why many of us are very impatient and why the National Assembly Government have taken the lead in pushing for a soft opt-out option.

Consumer Focus Wales

Debate between Mark Williams and Jonathan Evans

Wednesday 14th September 2011 Westminster Hall

[Mr Mark Williams (Ceredigion) (LD)]

It is a particular pleasure to serve under your chairmanship this afternoon, Mrs Brooke. I am grateful for the opportunity to once again put forward the concerns of the Welsh consumer sector to the Under-Secretary of State for Business, Innovation and Skills, my hon. Friend the Member for Kingston and Surbiton (Mr Davey). He was good enough to meet representatives from Consumer Focus Wales and my hon. Friend the Member for Brecon and Radnorshire (Roger Williams) a few weeks ago. I was grateful for that meeting, and I am grateful to have the opportunity to present to him what are perhaps some familiar arguments.

Consumer Focus was set up by the Consumers, Estate Agents and Redress Act 2007 and it has a federal structure, with autonomous bodies in each of the devolved nations. The bodies collaborate, but each leads on projects of its own, particularly where there are differences due to devolution. Consumer Focus Wales has done some outstanding work on a number of issues of concern to my constituents. It has worked very closely with trading standards departments on the major concern of private car parking, including with Lawrence Martin from Ceredigion trading standards, to try to eradicate the shady practices that sadly have gone on in the pursuit of private parking offences. I understand that one private operator in Ceredigion has been the cause of the most trade complaints in the area for many years. A year ago, Consumer Focus Wales put out a call for evidence to consumers and received numerous complaints about private car park operators. The complaints included instances of operators misleading consumers about the nature of charges, operators and debt recovery agents using threats to secure payment, charges that bear no relation to the loss sustained by the operator or landowner, ease of access to keeper details registered with the Driver and Vehicle Licensing Agency, errors in charging and the lack of an independent appeals process. I also, as a constituency MP, have received a number of complaints, and there has been interest in the local press. I cite that as just one pertinent example in my constituency.

Consumer Focus Wales has carried out crucial research as part of its work, thanks to which we know that 200,000 people in Wales do not have access to a bank account, 206,000 homes in Wales are off the mains gas network and half of prepayment meter households self-ration their energy. That research has given us additional insight into the problems faced in Welsh communities, particularly rural ones. I am very glad that my hon. Friend the Member for Cardiff North (Jonathan Evans) is here this afternoon. We do not know whether the new model will allow for such unique Welsh research to be carried out to the same extent, advancing Welsh issues in a Welsh context.

The work that Consumer Focus has done on post offices, digital inclusion, fuel poverty and financial services has been very important in raising the issues and in proposing practical solutions to some of the concerns. A major piece of work for Consumer Focus Wales this year has been an investigation into park homes, which is an issue close to many of my constituents’ hearts. Many of the issues involved, particularly licensing by local authorities and planning, are devolved, so that is an excellent demonstration of why we need a Welsh perspective.

Perhaps the most important work that the organisation has done—literally a matter of life and death—has been its investigation into E. coli and food safety. All members of the Public Bodies Bill Committee have received as written evidence a letter from Sharon Mills, who tragically lost her son as a result of the 2005 E. coli outbreak. Consumer Focus Wales has taken up the matter, raising some serious concerns about food safety, and changes have been implemented as a result, such as the Welsh Government agreeing to introduce the mandatory display of food hygiene ratings by all food businesses, and encouraging the Food Standards Agency to clarify the law on the separation of raw and cooked food. Just this month a food safety map of Welsh schools was released, which highlighted the ones that had failed to make the grade. For the record, it is worth quoting a paragraph from Mrs Mills’s letter:

“If it wasn’t for Consumer Focus Wales the profile of food safety would not have been raised over the past two years, significant advancements in implementing these recommendations wouldn’t have been made or reported and most importantly myself and other families would continue to be in the dark about what action was being taken to ensure no other family has to go through what we have been through.”

[Jonathan Evans (Cardiff North) (Con)]

As a former consumer affairs Minister, I acknowledge the difficulty that there was during my time in office in getting a coherent and relevant representation of consumer viewpoints, which was a key Government objective. It is universally recognised that Consumer Focus Wales has managed to achieve that objective and, therefore, within the context of the reforms that are being considered, I wonder if my hon. Friend would not think it appropriate for the responsibility for Consumer Focus Wales to be devolved to the National Assembly for Wales, so that we can at least retain within our area an organisation that is universally admired across the political spectrum.

[Mr Williams]

I am very grateful to my hon. Friend for making that point; he pre-empts the second half of my speech. The central message on which I agree with him is the need to secure a holistic body of information, with those isolated cases with which we as constituency MPs often deal put into the much broader context. That has been the great strength of Consumer Focus, and Consumer Focus Wales.

I wanted to set out the work that Consumer Focus Wales has done, because I do not want anyone to be under the illusion that it is not a relevant or useful body. I certainly do not believe that the Government take the view that the work done by Consumer Focus is not valuable; the Minister has said that that is not the case in our discussions. The organisation’s work is recognised, because the Government propose to transfer its functions into another, albeit in my view inadequate, model. The Government’s intention to reduce the cost is understandable, and I sincerely hope that they are able to deliver a service for consumers at a lower cost, but these functions are vital—they make a real difference to people’s lives.

The Government are now consulting on their approach to consumers, while the legislation that will allow them to abolish Consumer Focus makes its way through the Commons—the hon. Member for Clwyd South (Susan Elan Jones), who is here, will recollect yesterday’s brief discussion in the Public Bodies Bill Committee on the role of Consumer Focus. The consultation had not, however, even been launched when the Bill was heard in the House of Lords some months ago. That certainly is not the ideal approach, though it is arguably necessitated by the difficult timetable and the need to make savings. Nevertheless, it inevitably has created a sense of uncertainty.

The real concern that Consumer Focus Wales has is about the model proposed by the Government. There are few organisations that I have praised more often in this House than Citizens Advice. It performs excellent advocacy right across Wales and the United Kingdom, but it does not have—currently, at least—a great deal of expertise in detailed policy research, certainly outside of benefits, personal finance and housing. It has done some admirable work, and as a constituency MP I have referred cases to it on such matters, and it has referred cases back to me. What were formerly my two bureaux in Aberystwyth and Cardigan, now merged into one Ceredigion bureau, have done some excellent work.