Cass Review

Nia Griffith Excerpts

Monday 15th April 2024 Commons Chamber

[Victoria Atkins]

My right hon. Friend is right to identify the cohort of young people between the ages of 17 and 25 as being of particular concern. Now that we have a clear pathway in relation to the treatment of children and young people under the age of 17, I have asked NHSE to focus primarily on that next cohort. Speaking to parents gives one a very real sense of their concerns about what they describe as the cliff edge between children and young people’s services and adult services for this very vulnerable group of young people. I do not want that to continue, and over the coming months we will see NHSE develop work to help that cohort.

My right hon. Friend has an understanding not just of how transformational the report and its evidence are, but of the challenges that this means for our health service in England and how we choose to respond. As for funding, NHSE has committed more than £17 million to the two new hubs in the current financial year, and I hope and expect that our devolved Administrations will commit similar sums to looking after children and young people in their areas.

[Dame Nia Griffith (Llanelli) (Lab)]

The Secretary of State has spoken of the need for multi-site centres, and has pointed out that two hubs have already been established. Will she tell us a little more about her plans to expand this to make it multi-site, and when that is likely to happen?

[Victoria Atkins]

As I have said, we hope to expand it to Bristol later in the year, and there will be a further three or four sites across England. However—this is a really important part of the report—this is not just about specialist services but about giving clinicians the necessary confidence to look after children and young people who may well be presenting at their clinics or surgeries with this condition as one of a number of conditions. We want to give them back that confidence, and the comfort of knowing that they need not just go down the narrow pathway of specialist services. Of course that will be appropriate for many, but we want to treat the whole child rather than treating just this particular condition, as has happened in the past.

Oral Answers to Questions

Nia Griffith Excerpts

Tuesday 5th March 2024 Commons Chamber

[Dame Andrea Leadsom]

My hon. Friend raises an important point. He will be aware that a decision was taken that ear wax removal services are better done in the community and that ear syringing can cause problems. That area is under review and I am happy to write to him to address the specific point he makes about over-18s and children.

[Dame Nia Griffith (Llanelli) (Lab)]

T7.   I absolutely agree that we should redouble our efforts to recruit and retain more home-grown carers, as the Welsh Government are doing by paying them all at least the real living wage, but in the short term we have to rely on foreign workers. From her earlier answers, it appears that the Social Care Minister is happy to deprive them of the enjoyment of their own family life, while we expect them to give our relatives loving care. Will she think again and speak to Home Office colleagues about dropping this totally inhumane ban?

[The Minister for Social Care (Helen Whately)]

As the hon. Lady will have heard me say earlier, we are grateful to international care workers who come to care for our loved ones in this country. We need to get the balance right between international recruitment and our home-grown care workforce. On the question specifically on dependants, I say to her that every care worker who comes here to do work in the UK has a choice as to whether to come here or not.

Government PPE Contracts

Nia Griffith Excerpts

Tuesday 6th December 2022 Commons Chamber

[Angela Rayner]

I thank the hon. Member for his comments, but I ask him: how many Members from across the House who were not Conservative Members got access to the VIP lanes? I can give him the answer: none, zilch, zero. That is the problem. The due diligence was not done on those contracts and it was his Government’s problem, his Government’s responsibility and his Government’s failure.

[Dame Nia Griffith (Llanelli) (Lab)]

My right hon. Friend is making an excellent speech. Does she agree that there is a huge contrast in the comments of the National Audit Office on the way the Welsh Government procured PPE, in that they did not waste public money and they did get value for money. They did not end up having to explain to the House how they gave contracts to various people. Does she not agree that that is the way a Labour Government in action really works?

[Angela Rayner]

I absolutely agree. This was a global pandemic, yet it is the UK Government who are constantly criticised about these contracts and the way in which they were doled out and given. All the motion today asks for is transparency. What have they got to hide?

--- Later in debate ---

[Dame Nia Griffith (Llanelli) (Lab)]

My hon. Friends have set out very clearly the shocking scandal of the PPE contracts. They have also mentioned people who were working hard on the frontline, putting themselves in danger to help others; and, of course, all those who lost loved ones. I will concentrate on the damage that the VIP lanes have done to loyal, reputable companies—the backbone of British business—who offered to be generous and go the extra mile to help, rather than looking for chances to rip the taxpayer off.

BCB International, a company that operates in my constituency and in Cardiff, is a long-established manufacturer and supplier of life-saving equipment, including medical equipment. Its primary customers in the UK are the Ministry of Defence, the Ministry of Justice and many police forces, and it exports approximately 40% of its turnover. It makes, for instance, very good fuel for camping gas stoves called FireDragon. It was registered, it was known to the MOD and the MOJ, it had a good reputation, and it was ready to go. In March 2020, it was engaged in the production of its high-quality hand sanitiser, Dr Browne’s, in Llanelli. It employed up to 100 staff, and worked 24/7. The 80% alcohol sanitiser passed all the appropriate tests, and was well liked and used by the NHS in Wales, as well as by a number of police forces and other public bodies.

Owing to the PPE shortages, the UK Government made a commitment early in the pandemic to “back British business”, and their “UK Make” programme, headed by Lord Deighton, was tasked to unleash the potential of UK industry to scale up domestic PPE manufacturing. In May 2020, Lord Deighton said:

“As countries around the world face unprecedented demand for PPE, British industry is stepping forward to make sure vital pieces of equipment reach our workers on the frontline.

My role is to increase our homegrown PPE supplies, both now and in the future, by investing in the potential of UK manufacturing.”

However, I understand that the “UK Make” policy was withdrawn in September 2020.

In May 2020, following the Government initiatives, BCB invested £700,000 in new hand sanitiser production equipment. It also bought in high-quality FFP3 face masks from Europe, set up gown production, and made oxygen bottle bags. It supplied all those, successfully and on time, to the Welsh NHS, to Welsh and English police forces and to the MOD.

From March 2020, the company regularly tried to sell its British PPE products to the Department of Health and Social Care, and it has provided a brief overview of just some of the names that it was in contact with. I do not have time to read them out now, but the company tells me that although it made these contacts and sent many other emails, it was never contacted back. That is an utter disgrace, and today we have seen why that was the case. There was no need for it to be the case. Good, loyal companies that did everything they possibly could and turned their workforces to working for the country were completely ignored.

As has been mentioned, it was not like that in Wales, and companies have spoken very highly of the Welsh procurement procedure. It is no wonder that the Auditor General for Wales has said:

“In contrast the position described by the NAO in England, we saw no evidence of a priority being given to potential suppliers depending on who referred them.”

Those are extremely strong words, from an auditor referring to what was happening in England. The Welsh Government put in place good arrangements overall. That is such a contrast, and this is what is so damaging to all the good businesses in this country who want to play by the rules.

[Madam Deputy Speaker (Dame Eleanor Laing)]

I call the shadow Minister.

Covid-19: PPE Procurement

Nia Griffith Excerpts

Thursday 24th November 2022 Commons Chamber

[Neil O'Brien]

We keep all those things under review, but the Economic Crime and Corporate Transparency Bill is part of addressing some of the issues that the hon. Lady is concerned about. We are blurring together two different issues slightly—[Interruption.] Let me finish the point. Lord Agnew was talking about the loan scheme, but that relates to the same issue of the need for pace, which all hon. Members were calling for at the time. There was a need to get loans out to small businesses, which saved tens of thousands of jobs in my constituency and, I am sure, her constituency as part of the huge and unprecedented £400 billion spend to preserve lives and livelihoods.

[Dame Nia Griffith (Llanelli) (Lab)]

BCB International in my constituency, which is an accredited bona fide pre-pandemic supplier to the Ministry of Defence, adapted production lines to produce a range of PPE. It supplied the Welsh Government and other public bodies such as the police, yet in spite of repeated attempts, it did not get a look in—or even a reply—from the UK Department of Health and Social Care. Today, we might have heard why. Despite the shoddy way that he was treated, its managing director Andrew Howell has offered to meet the appropriate personnel to discuss any possible low-cost, legal and easy solutions to maintain British supply security of essential equipment. Will the Minister now facilitate that meeting?

[Neil O'Brien]

I mentioned that due diligence was done on more than 19,000 companies—a huge number of companies and people got in touch to offer to help—but let us continue that conversation. I am happy to talk about the particular issue that the hon. Lady raised.

Land Registry

Nia Griffith Excerpts

Thursday 30th June 2016 Commons Chamber

[Nia Griffith (Llanelli) (Lab)]

A few weeks ago, I joined Public and Commercial Services Union members and representatives from the campaigning group 38 Degrees to hand over a petition with more than 200,000 signatures to the Department for Business, Innovation and Skills, calling on the Government to abandon plans to privatise the Land Registry, which has its main offices in Swansea, where many of my constituents work. Why on earth are we here again, just two years after the previous attempt at privatisation?

It is not simply employees of the Land Registry and their PCS and First Division Association representatives who are very concerned about the privatisation. Back in 2014, we had a meeting in the House of Commons—it was organised by my hon. Friend the Member for Chesterfield (Toby Perkins), who then shadowed the BIS Minister with responsibility for the Land Registry—at which real concerns were expressed by representatives of the Law Society and the Council of Property Search Organisations. Jonathan Smithers, deputy vice-president of the Law Society, and James Sherwood-Rogers from the Council of Property Search Organisations explained that, in their analysis, a privatised land registry would inevitably end up being a private monopoly that could impose rip-off fees and provide a worse service for its clients.

We then discovered from leaked documents that the Government were determined to push ahead with privatisation plans and that the recent consultation had in fact been a sham. They had clearly not listened to respected independent bodies, such as the Law Society, never mind to their employees, who were represented by the First Division Association and the Public and Commercial Services Union. Two years later, it seems that the Government are determined to push through privatisation of the Land Registry, because the consultation is focused on how to do so, not whether to do so.

To me, privatising the Land Registry would be nothing short of daylight robbery: it would rob the taxpayer of millions of pounds. The Land Registry currently brings £100 million into the Treasury in profits each year, so it is madness to steal that from the Treasury and stuff it into the pockets of private contractors, who would probably then add insult to injury by hiking the fees and ripping off the public. The enthusiasts of privatisation cite the benefits of healthy competition in providing a better service for the public, but we all know what happens to a privatised monopoly, which is exactly what the Land Registry would become. There would be no control over the service provided, and prices would be hiked.

[Christian Matheson (City of Chester) (Lab)]

Does my hon. Friend agree that this is part of a pattern with this Government in which debt is nationalised and profit is privatised?

[Nia Griffith]

Indeed. My hon. Friend puts it concisely.

Let us remember what happened with Royal Mail. Who is to say that this Tory Government will not be wilfully incompetent and will not sell off the Land Registry at a bargain basement price, as they did with Royal Mail, depriving the public purse of the true value of the asset? Even worse, we hear that the private companies interested in taking over the Land Registry have links with tax havens. It would be a double whammy: first, the Treasury may lose the revenue that the Land Registry brings in; and then, to add insult to injury, the Treasury may lose out because profits are offshored. We would lose not only the revenue but some of the tax take. As other Members have pointed out, in situations such as that with the Panama papers the public interest would be seriously hampered if FOI did not apply, as I understand it would not were the Land Registry a private company.

All in all, it would be an absolute disaster, and that is before we even come to the issue of trust. Currently, the Land Registry’s customer satisfaction rating is enormously high—some 98%. People trust it because they know it is impartial, as only a Government body can be. How could we possibly guarantee that there would not be conflicts of interests if it were a private company? Then there is the issue of data protection. I am advised that there is nothing in law to prevent a private company from selling on personal data to buyers who wanted that information.

For all the reasons mentioned both by me and by my hon. Friends, I implore the Minister to think again. He should listen as well to Government Members who also have concerns. Privatising the Land Registry is simply not the right thing to do. It is not just us who are saying that. The Law Society has set out its concerns very clearly. We have already heard concerns from practising solicitors. We really must keep the Land Registry in public ownership, so that we can maintain its integrity.

Contaminated Blood

Nia Griffith Excerpts

Monday 20th July 2015 Commons Chamber

[Ben Gummer]

I hope that my hon. Friend’s constituent will be reassured by the aims of the consultation when they are published shortly. She should know that overall, we are trying to address the problems that sufferers, beneficiaries and victims have had with the existing five schemes. It is to that end that we will launch the consultation, the aims of which will be published in detail, and provide a settlement.

[Nia Griffith (Llanelli) (Lab)]

Taking action by the end of the year means that it will already be nearly a year since the report produced by the all-party group on haemophilia and contaminated blood. While impressing on the Minister the need to take urgent action, may I return to the panel that my right hon. Friend the shadow Health Secretary mentioned? What further answer can the Minister give about setting up a panel to provide more comprehensive answers to those who have experienced so many years of agony and waiting?

Penrose Inquiry

Nia Griffith Excerpts

Thursday 26th March 2015 Commons Chamber

[Jane Ellison]

As I have said, those are matters for the next Government to consider. Compensation was not in the terms of reference of the Penrose inquiry, but it was important, given the extent of the inquiry, that we waited for it to report. Unfortunately, it has reported too late for us to be able to make substantial progress in this Parliament, but I am quite certain that the next Government, held to account by the next Parliament, will return to these matters as a priority.

[Nia Griffith (Llanelli) (Lab)]

A constituent points out that he received a letter in 2009, stating that he could have been infected as late as 2001, including with variant Creutzfeldt-Jakob disease. As the report goes up only to 1991, will the Minister reassure those people that all the issues, even those going up to 2001, will be taken into consideration, and that they are equally likely to be compensated?

[Jane Ellison]

All relevant matters will need to be considered by the next Government. By the time the next Government are formed, and the next Parliament is assembled, Members will have had more chance to look at Lord Penrose’s detailed narrative of these tragic events.

Gay-to-straight Conversion Therapy

Nia Griffith Excerpts

Wednesday 20th November 2013 Westminster Hall

[Sandra Osborne]

I agree with the hon. Gentleman and I hope to get some answers from the Minister.

Conversion therapy used to be a much greater and more systemic problem in Britain than it is today. In the 1950s and ’60s, LGBT patients were routinely forwarded by teachers, GPs and, as in the case of Alan Turing, criminal courts to NHS so-called specialists in sexual orientation treatment. During that period, all branches of psychology from the cognitive to the behavioural and the psychodynamic had their own cruel and unpalatable methods of dealing with same-sex attraction.

The watershed moment came when homosexuality was removed from the American “Diagnostic and Statistical Manual of Mental Disorders” in 1973. However, simply changing the rules does not change an entire system overnight. Conversion therapy persisted and psychotherapy remains an unregulated profession in Britain. Anyone in the country can set up as a psychotherapist without being part of a professional body, and there are professionals practising in the NHS and therapy sectors who received their training well before homosexuality ceased to be classed a mental illness. Even the new intake of therapists is a cause for concern.

In 2008, a survey of 226 British psychology undergraduates was published in the Journal of Homosexuality and found that only 66% agreed with an equal age of consent. That is the context in which we should view the extent of conversion therapy in Britain. In a 2009 survey of more than 1,300 accredited mental health professionals, nearly 300 willingly admitted to having attempted to change at least one patient’s sexuality. Even more shocking, the therapists admitted that some 35% of the patients they treated were referred to them for treatment by GPs, and 40% were treated inside an NHS practice.

[Nia Griffith (Llanelli) (Lab)]

Does my hon. Friend agree that it is very serious that the issue is so widespread among GPs and other professionals, and that we must tackle that when regulating psychotherapy and the health professionals who refer people?

[Sandra Osborne]

The issue is serious and it is not recognised to the extent it should be, which is one reason why I am so pleased that we are having this debate.

In 2010, Patrick Strudwick of The Independent carried out an undercover investigation. One psychotherapist who attempted to “cure” him, Lesley Pilkington, readily admitted that most of her clients were referred to her from her local GP’s surgery. Many professionals receive little training in what to do when a gay person approaches them expressing uneasiness about their sexuality. There is legitimate concern that some professionals in the NHS and elsewhere are referring LGBT patients to conversion therapists.

Addressing the problem of conversion therapy in Britain requires a range of measures. In the therapeutic profession, affirmative therapy, which begins from the premise that no efforts should be made to change sexuality and that homosexuality is perfectly normal, should be promoted as the appropriate, healthy way of assisting LGBT patients who feel uneasy about their sexuality. To promote this therapy, we must ensure that therapists and students are properly trained in LGBT-friendly mental health provision.

The public sector equality duty mandates the public sector to address inequality and is vital to drive forward reform. That is why recent Government calls to review the duty are particularly concerning. It is important to consider the role that the public sector equality duty can play in improving the quality of care for LGBT patients. What initiatives has the Department of Health supported from the Equality and Human Rights Commission, for example, and from non-governmental organisations such as Stonewall, to identify and promote good practice in relation to the public sector equality duty and LGBT patients? We know that when public bodies are proactive, it can make a real difference.

We need to explore the regulation of psychotherapy. At the very least, it has to become a protected profession in which nobody can legally call themselves a psychotherapist without being accredited by a professional body. We also need to ensure that professional bodies have an appropriate complaints procedure, so that LGBT patients who undergo conversion therapy can achieve justice. Patrick Strudwick, to whom I referred, has raised concerns about the complex bureaucratic process that he had to go through to ensure that the conversion therapist who treated him was struck off her professional body.

We need to ensure that psychotherapists who are not members of those professional bodies that explicitly have a position against conversion therapy are not commissioned by the NHS. Will the Minister tell us whether groups without professional affiliations are commissioned by the NHS for services? What about the advertising to which I referred earlier? A New York Times advert in the ’90s for conversion therapy is credited with causing a revival in the practice. That is why restricting advertisements for conversion therapies is vital and should be explored. What is the Minister’s view on that?

At the very least, the Government must force practitioner full disclosure, which was advocated as the desired alternative to the model of Health Professions Council regulation in the Maresfield report of 2009, and involves

“the establishment of an independent body to administer a register of therapists, with the statutory requirement that anyone practising a therapy supply full details of training and professional history.”

The Government’s regulatory model for psychotherapy falls far short of PFD. Why?

Finally, I want to raise the question of the role of the law in tackling the practice of conversion therapy. The Government could opt to ban conversion therapy for all under-18s and go further with an all-out ban for all age groups, as happens in other countries.

Low Dose Naltrexone

Nia Griffith Excerpts

Thursday 8th December 2011 Commons Chamber

[Nia Griffith (Llanelli) (Lab)]

First, I want to make it clear that this debate is not about fighting for a very new and expensive drug. Campaigns about drugs are often brought to the attention of Parliament because a patient is fighting to be allowed to have a new and expensive treatment on the NHS. Some of these new drugs are not just expensive because they are new; because of the complex processes required to make them, they will, in fact, often continue to be expensive to produce. Such situations raise dilemmas for decision makers about how access to such drugs can be funded.

This debate is about a very different problem: making an existing drug that is modestly priced available for the treatment of a wider range of conditions. Clinical trials are needed to get full approval for the drug under discussion, but I ask the Minister to consider whether there is any possible way in which it could be made more widely available.

Sometimes patients are faced with unacceptable options for treatment and find themselves researching possible new treatments. That is usually a road that leads to disappointment, but occasionally something useful is stumbled upon, such as low dose naltrexone, or LDN. The problem is that it is what is called an “orphan drug”, which means its patent has expired, so if someone does research on it, a generic manufacturer can subsequently steal the business.

I understand that naltrexone is proved safe in its normal mode of use, and now has a clinical history of 11 years of use in the UK with no problems reported and only minor side effects. LDN is also very low cost, and can be used to treat many conditions that are both chronic and often very expensive to treat with more conventional remedies. Sometimes those more conventional remedies have severe side effects, which then have to be treated with more expensive drugs.

The purpose of this debate is to ask how a drug such as LDN could be made available to patients who ask for it. The most desirable route would be via clinical trials leading to marketing authorisation and then official acceptance from the National Institute for Health and Clinical Excellence and the NHS. A much cheaper and more immediately practical route is to recognise that LDN is a safe choice for patients without many of the risks of drugs currently in use. Doctors could therefore be given official advice not to deny it to patients who want it or wish to acquire it from pharmacists who make it as a “special” at a fair price. There could also be a mechanism for protecting doctors and allowing patients choice. At present, doctors are in a difficult position. If they prescribe anything that is not on an official list, they leave themselves open to criticism, as well as to being sued and possibly losing their right to practise.

The third route is to get it listed as an over-the-counter drug, such as aspirin or paracetamol. I understand that it is considered safer than paracetamol which is sold over the counter, so this might be a reasonable option that would make prescription very easy.

[Annette Brooke (Mid Dorset and North Poole) (LD)]

I congratulate the hon. Member for Llanelli (Nia Griffith) on securing this debate. I am sure that, like me, she has a number of constituents who are benefiting from this drug—I refer particularly to members of the Purbeck and Wareham multiple sclerosis group. It is so frustrating that they cannot get hold of something, through the NHS or in some form that is easily accessible, given that it is definitely making a difference to their lives. I am sure that she would agree that there is a fear that they might not be able to get it one day. What do they do then?

[Nia Griffith]

The hon. Lady is quite right. These people fear that if they change from one GP to another, or if people are less sympathetic towards this drug—obviously this is something that people have to be convinced about—they may well not be able to get hold of it. Unless there is some form of authorisation and some form of making it an official drug that is more widely available, they do run the risk that she describes.

The problem is that many patients feel let down because what they see as perfectly good therapies, which are cheap but out of patent, are being withheld when patients want them. When doctors cannot refuse a patient’s choice, they can still deny it to them, because clearly the issue of their professional conduct is involved. If the NHS recommends another treatment, quite possibly one that costs thousands and has drug company support, it is often difficult to get the research done to prove the validity of a drug such as LDN.

Some 5,000 people in the UK with multiple sclerosis use LDN, and a few thousand more use it for other conditions, such as Crohn’s disease, cancers, fibromyalgia, autism and so on. Their GPs usually prefer not to sign NHS prescriptions for LDN—indeed, they may refuse to do so—but there are instances of GPs then charging patients for private prescriptions, explaining that they are worried that NHS prescribing guidelines would prohibit them from prescribing LDN and so they would end up in serious trouble if they did so. One GP in Glasgow who prescribes a lot of LDN was reported to the General Medical Council for doing so recently. My constituent Andrew Barnett has told me that his GP has said that his lawyers advised against it, so he writes my constituent a private prescription and charges him £8.50 a quarter for doing so. My constituent then also has to pay for the LDN itself, at a cost of £17.50 a month.

Some 100,000 people in the UK have MS, only 12% of whom use drugs offered by the NHS. Some of the drugs available are risky and very expensive, and there are questions about how effective they are. Yet some 5% of MS sufferers choose to use LDN, because they feel that it helps them and does not have the risks of some other treatments. LDN has proved to be safe in trials at very high doses, but it is unpromoted and hard to get. Because people are now making this choice, there must be a way to get this treatment legitimised on the NHS for patients who ask for it. However, we are told that without substantial trials that is not possible. It is very difficult to find a way to fund any such trials because the drug itself is already licensed and therefore drug companies would not be able to recoup the cost of funding the research by marketing the drug; there would be no money in it for them.

We live in an age where information, including real scientific papers and trials reports, is easily available. Patients who are really determined to make the most of their lives, despite terrible illnesses, and who have the wherewithal to look into the research do seek out information and solutions. We have been using LDN in the UK for some 11 years. Naltrexone has been trialled at high doses to treat heroin addiction and is known to be safe, so the only real thing missing is the marketing authorisation from the Medicines and Healthcare products Regulatory Agency—MHRA—for a formulation of low-dose naltrexone, perhaps in liquid or capsule form. A trial would add proof—or not—of its efficacy.

The cost of a trial is probably considerably lower than the cost of a high-tech drug, because the drug itself is so cheap. Estimates suggest that a single trial can be done with some £7 million, but that is just an estimate based on £1,000 per patient a year for the monitoring specialists, plus up to £3,000 a year per patient for LDN. There would be the costs of recruiting 500 to 800 patients and then something to cover the analysis of the results.

There are no systems available, however, for patients to translate their choice of therapy into a legitimate request, even when they vote with their feet in large numbers. Doctors do not see any danger in the choice except that they worry they might be denying people a more effective option, but, as patients have pointed out, if they need what is perceived to be a more effective option, they can take it alongside LDN anyhow.

My constituent Andrew Barnett, who is highly intelligent, scientifically minded and analytical, has made the assessment that LDN seems to have stopped his disease developing further. The constituents of the hon. Member for Mid Dorset and North Poole (Annette Brooke) have confirmed the same belief. My constituent regrets very much that he did not start using it earlier. If he had done so, perhaps some five years ago, he feels that he would still be working and contributing actively to the economy.

Doctors have to be able to say no to treatment choices for the sake of the patient, but when they have no reasons to deny an option, as is the case with LDN, that should not happen. We should try to ensure that we enable them to prescribe LDN. Doctors all tell us that without the trial, they do not have the confidence to prescribe, so patients face the potential loss of supply of prescriptions if they change doctor, quite apart from the cost of private prescriptions, which is hurtful for many patients who have been reduced to living on income support by sickness or disability.

So, the substance of the debate is about patient access to therapies that cannot get the trials they need for reasons such as not being patentable or the lack of profit in the therapy, especially when the therapy is known to be safe. LDN seems to be the most prominent, in that there are no sensible arguments to deny it to patients who want it and those patients report great satisfaction with it in most cases. It is frankly a disgrace that such options are denied to informed patients who ask for them on the NHS. It would save the NHS so much money to allow this. LDN can be supplied for as little as £17.50 a month, compared with some other expensive drugs, such as £60,000 for Copaxone, £15,000 for Avonex or £90,000 a year for another drug that was recently in the news.

The question is how we can get the trials and get people interested. Academics often rely on backing from pharmaceutical companies to put together their plans and proposals for a research project. It is very difficult to find academics who want to spend that time and energy if they do not know that they will get the backing. They could put in a lot of work without getting any funding for any proposal.

We must face up to the problem of what systems we have in place to provide licensing for drugs such as LDN. One doctor I have talked to, Dr Lawrence from Swansea, tells me that LDN not only seems to have acceptable uses for people with multiple sclerosis but, he feels, has enormous potential for the treatment of cancer. That would be a very worthwhile investigation, considering that we spend so much on looking for answers and on treating the various cancer diseases. Sanctioning the use of LDN would also allow doctors to collect clinical data that could be used to monitor and help prove the effectiveness of the drug.

Naltrexone is already an approved drug at higher doses and research and clinical trials have already shown its effectiveness at low doses to treat auto-immune diseases. Patients have difficulty in getting their GPs to write prescriptions and have to get the treatment privately, but it would be preferable for patients to work with their GPs so that their GPs can monitor them. GPs have had to seek legal advice to find out whether they should be prescribing it and lawyers have advised against it, putting them in a very difficult position.

Among the supporters of LDN are GPs, neurologists and oncologists who have seen patients’ diseases not get worse and there are cases where such specialists have supported its use for the patient and stated that in a written letter to the GP. Even then, the GP has felt unable to prescribe the drug for fear of being considered unprofessional.

Campaigners have worked with local health boards and PCTs to try to determine what knowledge there is about LDN and whether GP practices have heard of it or are using it. The responses came back negative. What can we do so that LDN is offered in addition to other drugs currently prescribed on the NHS? This is about patient choice. It would be nice to be able to make LDN available to patients on a much wider basis, but it is important that patients are monitored by their GPs when using any medication, so we do not simply want a free-for-all. We want the proper medical trials, proof and backing that is needed to show whether it is an effective drug, which will enable it to be made more widely available, but there is a real difficulty, despite the fact that the orphan drug could be a cheap option for the NHS, in funding the sort of research needed to trial it. I return to my initial request and ask the Minister whether there is any way he can make LDN more widely and easily available to patients.

--- Later in debate ---

[Mr Burns]

I am grateful to the hon. Lady for raising that point on behalf of her constituents. The short answer is that it is simply because there have been no clinical trials to assess the drug in its low-dosage levels, and so the conditions of the NHS, under the ways in which we operate in the provision of drugs for patients, have not been fulfilled at this stage. If she will wait for a minute or two, I will get to the nub of the point made by the hon. Member for Llanelli about how we could move forward to seek to address that situation. I hope that the hon. Member for Mid Dorset and North Poole (Annette Brooke) will find the way forward helpful and positive.

The hon. Member for Llanelli will no doubt appreciate that it is in everyone’s interest to see a booming medical research industry in the UK, because that leads to real improvements in the lives of patients, their families and carers, and we are determined to support it. We demonstrated our commitment to health research by increasing spending in real terms up until 2015. In August, my right hon. Friends the Prime Minister and the Secretary of State for Health announced a record £800 million, five-year investment in a series of biomedical research centres and units, which will translate fundamental biomedical research into clinical research that benefits patients and the NHS.

The coalition Government are committed to the promotion and conduct of research as a core function of the health service. The Health and Social Care Bill, which is now passing through another place, will turn this into reality by placing appropriate powers and duties on my right hon. Friend the Secretary of State for Health, NHS organisations, Monitor, and local authorities. We will make sure that the systems and processes for commissioning by the NHS Commissioning Board and by clinical commissioning groups promote, support and fund clinical research. The Government will consult on amending the NHS constitution in order to support patients to have access to novel treatments and to be part of the development of wider patient benefits, so that there is a default assumption, with an ability to opt out; that data collected as part of NHS care can be used for approved research, with appropriate protection for patient confidentiality; and that patients are content to be approached about research studies for which they may be eligible to enable them to decide whether they want a discussion about consenting to be involved in a research study.

The clinical practice research datalink will be introduced by the MHRA in partnership with the National Institute for Health Research, building on the NIHR’s research capability programme. This £60 million investment will offer data services, including providing access to data for researchers, data matching and linkage services, and data validation, to support the clinical trial and observational study work of the life sciences research community.

The NIHR will launch an updated UK clinical trials gateway in spring 2012. That website will enable patients and the public to access information about clinical trials and will be a development of the test site launched in March 2011. To increase the number of patients who can benefit from being involved in trials via the gateway, the NIHR has also developed a free smartphone app, which is available for iPhone users and will shortly be available for Android users. It provides a practical and innovative way for patients to access information about clinical trials.

I will now turn to the question of clinical trials that the hon. Member for Llanelli raised and that the hon. Member for Mid Dorset and North Poole raised, by default, in her intervention. I think that this explanation may provide the hon. Member for Llanelli with the basis for making progress in her quest. Clinical trials are a fundamental part of the drug development process, as she accepts. Trials and health research more generally are funded by a range of groups in the UK, in particular by the NIHR, the Medical Research Council, medical research charities and industry. The NIHR welcomes high-quality funding applications for research into any aspect of human health, including the use of LDN. Such applications are subject to peer review and are judged in open competition, with awards being made on the basis of the scientific quality of the proposals. As she has suggested, a new clinical trial will be required to support a licence for the use of LDN.

The MHRA regulates clinical trials on medicines when they are carried out in the UK. That includes granting approval to conduct a clinical trial and ensuring, through inspection, that the highest possible standards are maintained. However, the MHRA does not initiate clinical trials. A clinical trial needs a sponsor. Sponsors have usually come from industry, the NHS or academia. The hon. Lady is seeking Government funding for a clinical trial to prove the efficacy and safety of LDN. I can tell her that funding is available and that university-based researchers can apply for it.

The efficacy and mechanism evaluation programme is funded by the Medical Research Council and managed by the NIHR. It funds evaluation of the clinical efficacy of treatments. If evidence from such evaluations is promising, larger-scale trials can follow. That is one of the purposes for which the NIHR funds the health technology assessment programme. That programme produces evidence on the effectiveness, cost and broader impact of treatments and other types of health care intervention. In the case of LDN, as with all other novel treatments, I cannot prejudge how successful that pathway of research might be, but I can tell the hon. Lady that a pathway does exist, as I have described.

In addition, the hon. Lady expressed concern about whether the systems in place make provision for patients to say what research they would like to happen. I can assure her that patients can make a suggestion for the efficacy and mechanism evaluation programme to consider. Topics prioritised for funding may be advertised, inviting researchers to submit proposals for clinical trials in those topical areas.

I am grateful to the hon. Lady for raising this subject and giving me the opportunity to explain the background to a matter of considerable interest to many people, not least some of her constituents and those of the hon. Member for Mid Dorset and North Poole. I hope the last part of my speech in particular, in which I have explained an existing avenue that they and others interested in LDN may wish to pursue, will be helpful to them.

[Nia Griffith]

May I take this opportunity to thank the Minister for his very full and helpful reply?

[Mr Burns]

And may I, in the spirit of Christmas, thank the hon. Lady very much for the way in which she presented her case? It was quite clear from listening to her speech that she rightly felt very strongly about the issue on behalf of not only her constituents but people up and down the country who need LDN and who, at the moment, are having to go through the procedures that she described.

Question put and agreed to.

Organ Donation

Nia Griffith Excerpts

Wednesday 30th November 2011 Westminster Hall

[Glyn Davies]

My hon. Friend makes a good point. Because of the brief that the British Medical Association has circulated to Members, I want to quote the report’s conclusions so that we know what the taskforce actually said. One of the main recommendations states:

“The Taskforce’s members came to this review of presumed consent with an open mind, with many sympathetic”

to presumed consent. It went on:

“the more the Taskforce examined the evidence, the less obvious the benefit, and the more multifaceted and multidimensional the issue of increasing donor numbers was revealed to be…The Taskforce reached a clear consensus…that an opt out system should not be introduced”

as it could impact negatively on organ donation.

I was quite shocked to receive the BMA parliamentary brief because it sets out without the slightest doubt to give the impression that the taskforce recommended the opposite of what it did recommend. That is verging on a lack of professionalism. I have huge respect for the BMA and I was very disappointed to receive its parliamentary brief. It will seriously damage my confidence in such briefs in the future, whereas I depended on them in the past.

[Nia Griffith (Llanelli) (Lab)]

When someone dies it can be very difficult for doctors to talk about organ donation at that time. Does the hon. Gentleman agree that what we need is a huge drive to get families to talk about consent well in advance? We must be honest and acknowledge that organs that are fresh from healthy bodies are the most desired, and it is often the tragic deaths that lead to organ donation. We need to get as many people as possible signed up, other than those with strong religious objections. If people are signed up, doctors can have an informed discussion with them.

[Glyn Davies]

I absolutely agree, but I do not necessarily agree with having a list identifying people. I hope to cover that point. Having people’s views identified outside the traumatic circumstances that surround a death is absolutely key if we are to increase the number of organ donations in this country. That is what the evidence in other countries tells us.

When the taskforce was set up, the Prime Minister of the day expected it to support a transplant revolution, but of course it did not. A similar conclusion was arrived at by a cross-party group of Assembly Members who looked at the same issue. The Members I talked to went into that committee expecting to support presumed consent, but they said in the Assembly that it should not be presumed. They did not think it would deliver the increase in organ donation levels that was generally anticipated.

The second report of the organ donation taskforce in 20008 recommended an improvement in transplant co-ordination, and that is being implemented. The number of organ donors in the UK has risen from just over 800 in 2008 to more than 1,000 last year. That is an extraordinary and dramatic improvement that has saved hundreds of lives. I have searched pretty hard, and the evidence I found is that the way forward is to look at the problem logically and in depth, conduct serious research and then take well-considered action.

Many people support presumed consent because they intuitively feel that it must make a difference. Opinion polls show support, and it is not surprising that they do. When people are going around saying that the change to presumed consent will increase the number of organs available, others will automatically say that they are in favour, but the reality is not what they think. There is a misconception that, if a citizen does not put their name on a centralised, opt-out register, their organs can be used for transplantation. This is a half-consent system, and it is not the presumed consent system that is being proposed. With soft opt-out, or presumed consent with safeguards—these are the phrases used—the actual decision to donate still rests with potential donor’s family, as happens under the current system. The key issue—the point raised earlier by my hon. Friend the Member for Cardiff North (Mr Evans)—is that the donor’s wishes are known by his or her next of kin.

It is always dangerous to draw conclusions from international examples but, for many years, Spain was presented by those who support presumed consent as proof of the effectiveness of that system. Since the late 1980s, Spain has had the best rate of organ donation in the world and has rightly been recognised as a model for other countries. Because Spain legalised presumed consent in 1979, it has been assumed that this played a key part in its success. However, the 1979 legislation to introduce presumed consent had no impact whatsoever on Spanish donation rates. Key organisational changes introduced 10 years later, in 1989, delivered the success of which Spain is so rightly proud. Spain does not have, and has never had, an opt-out register.

The director of the Spanish organ donation body, Dr Rafael Matesanz, has said that the 1979 legislation is dormant and plays no role in Spain’s outstanding organ donation rates, but this fact does not deter the supporters of presumed consent. They now ignore Spain, citing cultural differences to explain why Spain is not a good example to follow. They also ignore the fact that the United States has one of the best organ donation rates in the world, despite there being no presumed consent there. In fact, civil liberties issues in the States would almost certainly prevent presumed consent being introduced there.

The focus now has moved to Belgium and to studies performed in Belgium 25 years ago, between 1984 and 1987. I tried to discover what happened, because I want to see more organs donated. If a system works, and there is evidence to show that it works, it is important that we study to such examples, so I have gone to a lot of trouble to find out what happened in Belgium.

Belgium introduced presumed consent legislation in 1986. The key result was that the rate of kidney transplantation in Belgium rose from 200 per annum in 1984-85 to 300 per annum in 1987. Again, under more detailed examination, the claim that this is the consequence of presumed consent just does not stand up to scrutiny. The results of these studies were published, as a page and a half meeting report, in 1990, by L Roels and co-workers, Transplantation Proceedings, volume 22, pages 2078 to 2079. The authors state clearly that the presumed consent legislation

“was consolidated by a nationwide information campaign about the benefits of organ donation…and is being maintained by continuous efforts to inform healthcare professionals about the modalities of organ procurement procedures.”

More importantly—crucially—the authors go on to say:

“Whereas before 1986 most smaller non-university hospitals were reluctant to participate in organ donation activities, by lack of any legal security in the absences of an adequate legislation. The majority of organs harvested” —

I do not like that word; I prefer “donated” —

“during the last 3 years were performed in this particular group of hospitals.”

Presumed consent was clearly a major factor in increasing organ donation in Belgium in the 1980s, but it is irrelevant to the current position in the UK because the legal certainties have never been an issue. It may have had some influence in Belgium but it is clear that Belgium is a very weak example of evidence on which to base a major change in UK policy.

--- Later in debate ---

[Glyn Davies]

The figures that I have seen show that the refusal rate in those communities is much higher in Britain. The rate of allowing organs to be donated by the next of kin is actually reducing among the non-BME population in Britain. So there is a lot of work. I do not know the answer to that. I do not want to make suggestions that I have not researched. I am trying to stick to the research, and I have not done research into that, although it is clearly an issue. It was a specific part of a debate here about two months ago and it is an issue we must tackle.

Finally, those of us who disagree with the proposals being put forward by the Welsh Government and advocated by my friends at Kidney Wales Foundation and the BMA have a responsibility to engage seriously with what is a genuine attempt to increase the availability of organs for transplant. It is a worthy objective. It is accompanied by a commitment to invest considerable sums of public money to achieve it. It has led to a lot of debate already, particularly in Wales, to this debate today, and will lead to much more. Many hon. Members are interested in the debate. If Wales and the Welsh Government seek to introduce the legislation, there will be huge debate across the UK. The debate itself is hugely helpful.

The final point I want to make this morning is that we should build on what is so obviously working. There is currently a national transplant week and a national donor day. However, these do not impinge as much on the national consciousness as we would like them to in the UK. I admit that I did not know that they occurred. If part of the extensive resources which would be used to implement the presumed consent legislation were to be used to create a national donor and transplantation day in Wales, what a difference that could make. It could have real impact. The resources could be used to celebrate the donors and their families of the preceding year on television, radio and the newspapers. The success stories of the recipients of new organs who are living a full life would be inspirational as examples and would help discussion about this issue, so that next of kin would know what their families’ wishes were.

[Nia Griffith]

Would the hon. Gentleman consider the advantages of trying to have specific points in people’s lives when they are asked about organ donation, such as when they get their driving licence or their national insurance number, or something like that, so that there is a methodical way of asking people to sign up?

[Glyn Davies]

I thank the hon. Lady for raising the point. That is not directly related to the debate today, but the point raised would support and strengthen the current system of an opt-in card, and it is a good idea. I have thought about it a lot and most people would accept that that is a reasonable way forward. It asks people their opinion and requires them to think about the issue. As long as we can extend that—having them tell their next of kin what their position is—it could be very successful.

We could learn from what has happened in Spain: Spain is the most successful country in the world. We also could establish a 24-hour information telephone line, with many more lines available on the national organ donor and transplantation day, if it were set up. On that day the people of Wales could be encouraged at every opportunity to tell their loved ones and their next of kin what their wishes are regarding organ donation. Husbands, wives and children will always be asked their permission. If you are ever unfortunate enough to be a potential donor, you need to have your next of kin know your wishes, so that they will be implemented. Telling them your wishes is much simpler, hugely cheaper, more effective and far more flexible than presumed consent legislation. Establishing a national database is expensive; overseas experience suggests that only 1% or perhaps 2% of the population are likely to use it. We know that it is more probably some 10% of people who do not want their organs to be donated; those are the figures we get—that about 90% of people are content.

This is a poor substitute. We all need more organs available for transplant. There is no dispute about that—it is a worthy objective that nearly everybody signs up to. Building on the success that we are achieving, involvement in a transplant co-ordination system is the way to go. Building on the evidence and on our experience, we know that that is what works; not creating a bureaucratic, superficially attractive, presumed consent system that simply will not deliver what we all want.