Human Fertilisation and Embryology (Amendment) Regulations 2024

Lord Wigley Excerpts

Tuesday 22nd October 2024 Grand Committee

The department has engaged with LGBT+ and HIV organisations to highlight the proposed regulations, which have, I am glad to say, been welcomed. Supporting these amendments will provide equality for same-sex couples in accessing healthcare and unlock the ability for those living with HIV to have a family using their own gametes. I beg to move.

[Lord Wigley (PC)]

My Lords, I am delighted to contribute briefly to this short debate for one specific reason. Back in 1990, when the defining Act was passed, it was at the end of a strenuous five-year battle of attrition, as certain Members in this Committee—in particular, the noble Lord, Lord Winston—will recall. The right honourable Enoch Powell had tried in 1985 to get a Private Member’s Bill, the Unborn Children (Protection) Bill, on to the statute book. It was hugely controversial; if passed, it would have prevented essential research into both infertility and avoiding certain hereditary disabilities, such as cystic fibrosis and muscular dystrophy. I should declare my own interests: we then had two boys who were alive with hereditary conditions.

This led to the establishment of the organisation Progress. Three of us were trustees: the late Jo Richardson, Peter Thurnham and myself. We were immensely indebted to advice and guidance from the medical fraternity, in particular the noble Lord, Lord Winston, people such as Robert Edwards and Michael Laurence, and a number of others. When that Bill was originally put forward by Enoch Powell in February 1985, it was passed in the House of Commons by 238 to 66 votes. By 1990, five years later, there had been such a sea-change in public perception—thanks to much of the work undertaken by the noble Lord, Lord Winston, and his colleagues—that the House of Lords passed what became the 1990 Act by 238 to 80 votes and, at Second Reading in the House of Commons, it was passed by 362 to 189 votes. It was an immense change in the public mood.

I pay tribute to the noble Lord, Lord Winston, and his colleagues for their pioneering work. I also pay tribute to those who have done such great work over the past 35 years at Progress and its successor organisation, PET, which is an independent charity that improves choices for people affected by infertility and genetic conditions.

On these specific regulations, I wish to ask the Minister a couple of questions. First, can she confirm that the devolved regimes—in particular, Senedd Cymru —are fully in support? Although this is not a devolved matter, it obviously overlaps with responsibilities that are devolved. Secondly, can the Minister give some indication of the potential additional costs on clients, to which reference is made in paragraph 9.2 of the Explanatory Memorandum? Might these be punitive, or even prohibitive? Thirdly, is there any likelihood of costs escalating to over £10 million? If so, what would be the mechanism for a statutory review, as mentioned in the regulations?

I welcome this instrument but I would be grateful for answers to those specific questions.

[Lord Winston (Lab)]

My Lords, I am rather embarrassed after the noble Lord, Lord Wigley, has spoken so volubly and over-kindly about the work we did together. I have to say that when he was Dafydd Wigley MP his amazing attempts to help us subvert Enoch Powell’s Unborn Children (Protection) Bill meant sitting all night several nights running to prevent that legislation going through, even though there was a big majority in the House of Commons. It is a remarkable story that has never really properly been told, but perhaps it should not be told. I cannot divert the Committee now, but one of the extraordinary things was that by the end of that I had remarkable respect for Enoch Powell, which I never expected. He behaved in an extraordinary way and with great dignity, even when he was losing. He was not quite as prejudiced as people made out. I think he was intellectually challenged by what he was seeing in front of him.

I return to the amendment, the business in hand today, which is essentially the issue with HIV-positive patients. We were the first people in the world to treat people who were HIV positive back in the 1980s. We had a baby as early as about 1986, possibly 1985—I cannot remember. It was a long time ago. That was before the regulations. We were aware that there was a small risk of transmission, but with caesarean section and so on the risk was so minuscule that we felt it was worthwhile. It got a lot of adverse publicity, until it was copied by a lot of other people, and it went on to be accepted. However, I accept completely that what the Minister is recommending is safer, but there are just a few questions I would like to ask her.

First, what would happen if the recipient was already HIV positive? Is there some regulation? That was something we faced nearly 40 years ago. I should like her to explain because I am sure things have moved on with the legislation, and I am not now clinically in practice, although I am still active in research. Secondly, I am concerned that the Minister should argue that this is just a matter for private practice. That is not acceptable. This should be available under the health service. The fact that somebody has a problem with HIV should in no way discriminate against their getting or giving proper treatment to a friend, relative or other person. I regard that as an essential human right. I suspect that there might be some reason to question that.

Unfortunately, one of the terrible things that has happened in Britain is that at the moment human in vitro fertilisation has become colossally expensive. The Minister gave a figure of £1,000. I regret to say that in London that would be almost impossible. I suspect that most people getting donations of this kind would be spending far more than that, even though it may not be clear. Clinics do not declare what they charge. The Human Fertilisation and Embryology Authority claims that it has no power to deal with the price of IVF. That is important to consider. I hope that the Minister will at least address that issue because undoubtedly—I beg her for obvious reasons because she will have sympathy—there is massive exploitation of women going through in vitro fertilisation. Every week, I get stories by email that suggest that what is happening not other than somewhat under the table, so that is the other issue.

The Minister made no mention of counselling. When the Bill was initiated back in 1990—it was passed first in the House of Lords, of course—there was a clear discussion during that debate about the need for counselling. It was repeated in the House of Commons as well—I see the noble Lord, Lord Wigley, nodding—and it was written into the workings of the Human Fertilisation and Embryology Authority. It is therefore important that proper counselling is part of this, and it should be written in in some way so that there is some understanding that it should be there.

The issues with HIV are always of concern, certainly in IVF. Suppose that somebody who was negative suddenly becomes positive again, which is not impossible, even though they may have had retroviral treatment in between. We ought to be aware of those things with this instrument.

Having spoken at great length on what seems quite a trivial matter, I have probably wasted the Committee’s time a bit. I am completely in agreement with the aim of what is undertaken here. I do not think there is any need to change the wording or anything like that, but what I am talking about must be considered. I thank the Minister, and I thank the noble Lord, Lord Wigley, for his extraordinary work 40 years ago, which is still remembered and greatly appreciated.

Children’s Hospices: Funding

Lord Wigley Excerpts

Tuesday 14th November 2023 Lords Chamber

[Lord Markham (Con)]

Yes, it is. I was surprised to find out that, for instance, the number of young people living with life-limiting conditions was 33,000 in 2001-02 and is over 90,000 today. That is the case because we generally have much better treatments for those children. That is obviously good news, but it means that lots more people with such conditions have to be cared for and we need to make sure that they are.

[Lord Wigley (PC)]

My Lords, as a former trustee of Hope House Children’s Hospices, I draw the Minister’s attention to the clinical guidance published by NICE, which showed that for every £1 spent by the public sector in supporting end-of-life care for infants, children and young people, non-cash savings worth almost £3 would be released back into the NHS. Will the Government commit to provide, ongoing, the necessary funding to sustain hospices and maximise the benefit for the NHS and, most of all, for the dependent families?

[Lord Markham (Con)]

As I said, we absolutely agree on the vital role of it all. The amount of funding that we placed there a few years ago was £15 million, so it has gone up by about 67%. It is excellent value for money, and it is excellent that we managed to get the care and energy of the voluntary sector into it. That is the model that I think we all believe in.

GP Appointments

Lord Wigley Excerpts

Thursday 23rd February 2023 Lords Chamber

[Lord Markham (Con)]

Absolutely. I know that a lot of the best trusts that I have seen and visited have that right at their front door. It applies to A&E as well. One of the first comments I made when I joined the department was about expanding pharmacy services. That is brilliant and is part of the increase we are seeing but, if we are not telling people when they should go and under what circumstances, how is this going to help? So, yes, there will be both digital and analogue navigation.

[Lord Wigley (PC)]

My Lords, the Minister referred to the generous provision of finance to Scotland through the Barnett formula. In that case, does he accept the underfunding of Wales through that formula? This has been recognised by a committee of this House. Does he therefore recognise that the pressures on the health service in Wales faced by the Government in Cardiff are a direct consequence of this underfunding?

[Lord Markham (Con)]

Again, my understanding is that Wales receives more health funding per person under the Barnett formula than England. I am pretty sure I am right on that—I will confirm if I am wrong, but I am pretty sure I am correct. So both the Welsh and Scottish Governments have more funding than England. Do they get better outcomes? Well, I would rather be living in England, let me put it that way.

Care Homes: Severely Disabled People

Lord Wigley Excerpts

Wednesday 30th November 2022 Lords Chamber

[Lord Markham (Con)]

As I say, we are working on this. The CQC has a vital role to play and we had a discussion recently with the Association of Directors of Adult Social Services, which welcomed the relief the Autumn Statement brings in this area. I can only reiterate that we have listened and acted.

[Lord Wigley (PC)]

My Lords, I draw attention to my registered interests. Do not these cases underline the need to ensure that the additional costs of severe disability, whether incurred in charitable establishments, commercially run accommodation or at home with families, should be met consistently from central sources rather than falling on local authorities, which may have neither the expertise in the degree of disability nor the resources to meet them?

[Lord Markham (Con)]

As ever in these areas, there is a debate to be had on centralism versus localism. I happen to believe that local authorities and healthcare systems are best placed to understand the needs of the people in their area, and I will continue to support that. Clearly, where help is needed, we are there. I reiterate that we have funds to support them from the centre, including a £2.3 billion increase for mental health, to give one example. Generally, I would keep to the principle that it is best that local people and authorities identify and meet local needs.

Long Covid

Lord Wigley Excerpts

Monday 23rd May 2022 Lords Chamber

[Lord Kamall (Con)]

I thank the noble Lord for his question. We have established 90 services and 14 paediatric services. We are at the forefront of research on this. A number of countries are asking about and looking at what are doing on so-called long Covid. I should be clear that long Covid is not an accepted medical term. There are three terms: acute Covid-19, which lasts up to four weeks; ongoing symptomatic Covid-19, which lasts between four and 12 weeks; and post-Covid-19 syndrome, which has lasted for more than 12 weeks. Each patient will have different forms and symptoms, and we are seeking to understand that through further research.

[Lord Wigley (PC)]

The Minister referred to £50 million being allocated to research. How much of that is for studies on affected children, estimated to number some 120,000, and what steps is he taking to ensure timely access to support for children with long Covid?

[Lord Kamall (Con)]

The noble Lord is absolutely right that we have to look particularly at the issue of paediatric care, as well as other long Covid sufferers. The research is varied in terms of the different medical definitions I just gave. Of the three categories, the latter two loosely tie in with what we understand long Covid to be. They are also in line with the WHO definitions. We have established specialised paediatric services, and the research will look across age groups to see what the most appropriate interventions will be.

Down Syndrome Bill

Lord Wigley Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Lord Wigley (PC)]

My Lords, I wish to speak in support of the Bill. I thank the noble Baroness, Lady Hollins, for introducing it to the House in such a comprehensive manner and I thank Dr Liam Fox, of course, for having introduced it in the first place in the House of Commons and for steering it through to get this far.

I draw attention to my registered interest as a vice-president of Mencap, which very much welcomes the Bill and the powers that it gives to create new guidance to reinforce the provision of services at local level. Perhaps I should also mention that we lost two boys with severe learning disabilities, although not with Down’s syndrome—rather, they suffered from one of the mucopolysaccharide group of disorders. They died at the ages of 12 and 13. We too had to make the 500-mile round trip to Great Ormond Street on many occasions, and I pay tribute to the tremendous work that is still being done there.

I have spoken many times in the House about the level of health inequality suffered by people with a learning disability. A report by Bristol University in 2020 showed that, on average, men with a learning disability die 23 years younger than those without such a disability, and women die 27 years younger than their peers in the population as a whole. They die not because of the direct impact of their specific disability but from other conditions which their disability prevents being adequately addressed. I served as a member of a special inquiry into this some 15 years ago. All sorts of promises were made at that time about improving this appalling situation, but here we are in 2022, still unable to close the gap.

This basically comes down to ensuring that everyone, whatever their learning disabilities, can access the services they need. This is the crux of this short and straightforward Bill. It is not a Bill which imposes new rights and new support on people with learning disabilities; it is to ensure that these people actually get the services to which they are entitled and which they should be getting under existing legislative and executive provision. The fact that they are falling through the net and are not getting such support is the basis for putting forward this short piece of legislation.

The Bill requires the Secretary of State to issue guidance to a number of public authorities with regard to the additional steps which they should take to ensure that they are meeting the needs of people with Down’s syndrome. The public authorities who come under the provisions of the Bill are those related to the National Health Service, social care, housing, education and youth offending. By using the mechanism of guidance, the Bill latches on to a lever which Secretaries of State already have for driving forward the policy of their Government, but it extends the application into a specific sector.

The Bill applies to England only, and noble Lords may well ask why I am involved. It is for two reasons. First, every step forward which helps people in one part of these islands can be a catalyst for similar progress in other parts, as was the Wales plastic bag legislation. Secondly, if the Bill can help people with Down’s syndrome in England, why on earth should I not be supporting it?

The Bill has been criticised for addressing Down’s syndrome people specifically, when there are many other conditions generating learning disabilities which will not be covered. I would merely respond that it is better to get this provision rolled out now and to use it as a lever that may secure similar improvements for other groups of people with learning disabilities. Indeed, the ministerial guidance provided by the Bill may act as a trigger for other groups as well.

Others will argue that a small Bill such as this is a wasted opportunity for getting a major piece of legislation to support people with disabilities on to the statute book, and they usually point to Acts such as Alf Morris’s Chronically Sick and Disabled Persons Act 1970. Well, it is great if an MP can get the top slot in the ballot and then gets the support of a Government willing to provide the necessary money. I came across that problem in taking through the Disabled Persons Act 1981; it was modest and limited in its scope, but it opened the door to the Tom Clarke Act of 1986, and the momentum generated undoubtedly contributed to the public mood, which demanded the Disability Discrimination Act 1995. We should never disparage small steps, as they move us forward, even in a limited way, and they can pave the way for more ambitious legislation in due course. So I am delighted to support the Bill.

Dementia: Art and Music-based Interventions

Lord Wigley Excerpts

Monday 22nd November 2021 Lords Chamber

[Lord Wigley (PC)]

My Lords, I declare an interest: my wife is a music teacher and my son runs a recording studio, at which I am sure the Minister would be very welcome. Does the Minister agree that one initiative which could help both dementia sufferers and young musicians and artists would be to sponsor of an internship scheme whereby such students could be working part-time in the care sector, thereby benefiting themselves and those in care?

[Lord Kamall (Con)]

I thank the noble Lord for that suggestion. We are looking, across the health sector, at how we can think outside the box and train students in other disciplines to help in healthcare. Clearly, music can potentially play a role. In terms of the music studio offer, can I just say “Wait until you’ve heard me”?

Elderly Social Care (Insurance) Bill [HL]

Lord Wigley Excerpts

2nd reading
Friday 16th July 2021 Lords Chamber

[Lord Wigley (PC) [V]]

I thank the noble Lord, Lord Lilley, for introducing this Bill, which gives the House and the Government a basis on which to respond to the ideas that he has proposed over several years and which draw on his experience as Secretary of State for social services. The thinking that he has put to the House today and has outlined previously in publications and speeches must be taken seriously, as it addresses a subject that successive Governments have failed to resolve.

Four factors have made this increasingly pressing over subsequent decades: the higher level of home ownership today compared to in previous generations; the longer life expectation of those who own those homes and extended periods of dependency; the breakdown of the close extended family, which provides care for elderly relatives in the family; and the massive financial challenge facing young people seeking to buy their first home and increasingly resorting to the bank of mum and dad.

This insurance-based Bill offers one way forward. It may not be the only way and it may not address all circumstances, but that does not mean that it cannot have a role to play. It should not be swept aside because it does not deal with every challenge in this field. I support the points made by the noble Lord, Lord Best, and others, particularly on having free social care in the same way as we have free healthcare. There must be an integrated approach, but that does not mean that there is no role for this Bill’s approach.

We shall have an opportunity to consider the detailed issues that have arisen today. I ask the noble Lord, Lord Lilley, only one question relating to the Bill’s applicability. It is an England-only Bill. I have no problem with that; I would however ask whether there may be difficulties if similar legislation is not enacted by the devolved Governments, who have responsibility for social care and housing but not social security. What would be the position of a couple living in England who had taken advantage of the provisions of this legislation but then want to move to Scotland or Wales because their children or grandchildren live there? Would they lose the provisions on which they had depended under this Bill?

Finally, from the viewpoint of local government, whose responsibilities seem to increase by the month and whose resources seem ever more squeezed, can legislative provisions to ensure that central government is obliged to fund these responsibilities ever be totally watertight? Having said that, I support the Second Reading of the Bill.

Women’s Health Strategy

Lord Wigley Excerpts

Tuesday 9th March 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, the question of fragmentation does not affect women alone; it is a problem across the healthcare system. However, the noble Baroness is entirely right: some of the conditions that afflict women in particular are not properly prioritised, and, therefore, the pathways connected with them are not as developed as they should be. That is the kind of challenge that we wish to address. However, the overall macro point is this question of listening: have we really listened to women—their symptoms, needs and health priorities—or are we behind the curve on that? I suspect that, too often, the health priorities that women would like to see emphasised simply have not been heard by the system.

[Lord Wigley (PC) [V]]

My Lords, I draw attention to my registered interest as a vice president of Mencap. In presenting this Statement to the House of Commons yesterday, the Minister stressed that the inquiry that the Government is initiating will specifically include disabled women and those with mental health issues—something that I greatly welcome. Will the Minister confirm that this group will also specifically include, in their own right, women who have learning disabilities, because they are disproportionately vulnerable to illnesses that have no relationship to their disabilities, which places them in potential double jeopardy and needs to be addressed in its own right?

[Lord Bethell (Con)]

Yes, I can reassure the noble Lord that the call for evidence is open to everyone aged 16 and over, which, of course, includes people with disabilities and learning disabilities. The online survey within the call for evidence specifically mentions disabilities throughout, and I reassure the noble Lord that the evidence that we gather with regard to disabilities and learning disabilities will be considered extremely carefully to inform the priorities, content and actions of the strategy.

Covid-19 Vaccines Deployment

Lord Wigley Excerpts

Thursday 11th February 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, the noble Lord touches on one very positive subject: summer holidays. I entirely agree with him on the therapeutic effect of planning one’s holiday. I spend far too much time looking at Scottish cottages and the North Coast 500 to inspire me about the months ahead.

The noble Lord touches on the very difficult subject of care homes. I do not avoid the fact that this is one of the most awkward and regretful circumstances of the moment we are in. The bottom line is that care homes have many residents of different ages. A care home epidemic is unbelievably difficult to control and leads to mortality and sickness. I do not recognise the 20% figure that he articulated, but he is right that in many homes it is not the case that 100% of residents have been vaccinated. It is certainly not the case that everybody who would wish to visit one has been vaccinated. We are in a strange lacuna where visits are not possible—at least not indoor visits, only outdoor ones. I hope that we can end this awkward and difficult moment with the swift and emphatic deployment of the vaccine.

[Lord Wigley (PC) [V]]

My Lords, will the Minister join me in welcoming the fact that Wales had become the first of the UK nations to have vaccinated more than 20% of its population? Will he confirm that the availability of vaccine supplies for all four homes nations has been co-ordinated by the NHS centrally? That being so, can he reassure me that adequate supplies will consistently be made available to the NHS in Wales to keep up this rate of vaccination, and to enable it to give to all those who have had their first jab their second follow-up jab within 12 weeks?

[Lord Bethell (Con)]

My Lords, I pay tribute to the Welsh for hitting that remarkable number. I thank the noble Lord very much indeed for bringing it to the House’s attention. I absolutely assure him that distribution of the vaccines is done in very close concert between the four nations. These numbers are assessed and gone through in great detail on a weekly call on Thursday evenings between the Secretary of the State and his opposite numbers. The JCVI and Emily Lawson, who is running the vaccination programme, are in close contact with their DA counterparts. The figures I have seen suggest that the supply to the nations is more than the target numbers that we had originally planned.