Terminally Ill Adults (End of Life) Bill (Sixteenth sitting)

Sarah Green Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Kim Leadbeater]

I am done.

[Sarah Green (Chesham and Amersham) (LD)]

We have had a good debate on the amendments in this group. I do not intend to push amendment 278 to a vote, and I have nothing further to add to my previous remarks. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 8, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert

“shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life”.—(Daniel Francis.)

Question put, That the amendment be made.

Terminally Ill Adults (End of Life) Bill (Seventeenth sitting)

Sarah Green Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Liz Saville Roberts]

While I agree with the hon. Member in principle, I am operating within the law in terms of Welsh and English, because there are legal considerations with those two languages in particular.

In the matter we are discussing, the ability for the person to communicate as directly as possible is of the greatest importance. I wonder whether the Minister will respond by saying that the codes of practice in clause 30 will be sufficient, but I emphasise that I took advice from the Welsh Language Commissioner’s office, and it was the Welsh Language Commissioner’s officer who advised that I table the amendments. We are operating in unique circumstances with this being a private Member’s Bill, and we need to have clarity on what is required in relation to how the legislation operates between England and Wales.

[Sarah Green (Chesham and Amersham) (LD)]

The hon. Lady will know that the Welsh Language Act 1993 put the Welsh language on an equal footing with the English language in Wales. Does she agree that it would be helpful to have clarity on whether the provisions in that Act apply to the Bill?

[Liz Saville Roberts]

That is exactly what I am seeking to do, and I am seeking to do it as co-operatively and collegiately as possible. But we need to have clarity on this, and our discussions need to be thorough and exact in order to be accurate.

When it comes to the individual’s right to use Welsh in their daily lives, two pieces of legislation are relevant to the Bill: the Welsh Language Act 1993, which predates devolution, and the Senedd’s Welsh Language (Wales) Measure 2011. The Welsh Language Act remains applicable for reserved matters, such as justice, and the Ministry of Justice operates a Welsh language scheme that enables people to use Welsh in courts, tribunals and other areas of justice. The Welsh Language Measure established the office of the Welsh Language Commissioner, who has the power to investigate complaints from Welsh speakers who assert that their freedom to use Welsh has been interfered with; created a Welsh language tribunal to hear appeals against the commissioner’s decisions; and enabled the development standards, which are particularly significant here.

The Welsh Language Measure states that individuals in Wales should be able to conduct their lives through the medium of Welsh if that is what they choose to do. Under the Measure, the NHS in Wales has a statutory duty to deliver services to the public in both Welsh and English. The Welsh language standards are a set of statutory requirements that set out responsibilities to provide services, and they apply to health boards in Wales, as well as to NHS primary care services that are contracted by the health boards. The standards do not apply to independent providers, which since 2019 must follow six Welsh language duties, one of which is to establish and record the language preference of patients. That is where I have got the terminology used in amendment 413.

That is a summary of the relevant considerations but, before I close, it is important to say why this matters to Welsh speakers. I spoke recently to medical practitioners in Wales who wanted me to emphasise their concerns at the lack of specific mention of language rights. I also spoke to the Welsh Language Commissioner’s officers, who advised me on the necessity of the amendments. There is a critique against providing Welsh language services that shrugs its shoulders and says, “Why bother? They all speak English anyway.” That is to ignore how integral language use is to the individual.

We are drafting a Bill to do two things in a very delicate balance: to respect the autonomy of the individual and to safeguard people against abuse in any form. For many Welsh speakers, Welsh is the language of their emotions. It is the language in which they express themselves most fluently, and the first language of their feelings. It matters to this Bill. English is the language of authority, and many Welsh speakers are anxious not to challenge the authority of high-status people such as doctors. They do that out of ingrained politeness, and out of fear of not being able to access services if they put any barriers in the way. That is the way that language gets used. Welsh speakers do not use Welsh in the way that monolingual English speakers use English; monolingual English speakers use English because it is the only language they have. For anyone who is bilingual or multilingual, the use of language is very complicated and sophisticated, and we need to be alert to it in all its respects.

I return to the nature of the relationship between doctors and their patients. Doctors have high status, and a patient approaches a doctor seeking services, advice and context. That is not a power dynamic that we should allow to go unchecked, so I urge the Committee to consider the amendment. I do not intend to press it to a vote, but I want a response from the Ministers. Before Report, I want absolute clarity on its legal necessity or otherwise. I feel instinctively—especially because the Welsh Language Commissioner’s office has told me this—that it should be in the Bill. I would also like a response from Ministers on amendment 414, tabled by the hon. Member for Ipswich.

Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Sarah Green Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Colleagues will have noticed that there is a slight delay on the line. Take account of it when asking questions and ask them briefly, please.

[Sarah Green (Chesham and Amersham) (LD)]

Q 157 I am keen to hear about the training, education and clinical supervision you have in place for assisted dying. Perhaps I will address that to Dr Fellingham, but I am sure you could all answer.

Dr Fellingham: Certainly. The training is very stringently developed, and very rigorously tested. Our management training practice, which is required of all doctors who want to practice assisted dying, was developed by our colleagues in the Australian Centre for Health Law Research at the Queensland University of Technology. It drew on extensive research that the group had conducted around the world to create an online training package that takes at least a day to complete and covers a huge amount of things that are of great concern. Not unsurpris-ingly, it includes things like how to assess capacity, how to detect coercion, how to assess for voluntariness, and how to determine the various different eligibility criteria that apply in our Western Australian law.

To be able to access that training and become a voluntary assisted dying practitioner, a person already has to be a doctor of quite some standing in their own specialty. They have to be a consultant in a specialty with at least one year of full-time practice under their belt, or a general practitioner with at least 10 years of broad experience. We are not talking about junior doctors being able to offer this; we are talking about doctors of significant clinical standing with a very broad range of patient experiences. They put themselves forwards and do that training, and then that training has to be refreshed and updated every three years.

I have five hospitals in my health network, and together with my colleagues I developed a very comprehensive package of training, education and awareness that is tailored for people who may have a role in this at various different levels, from a nurse on the ward all the way through to someone who actively taking part in the process. A very wide range of documents and training packages have also been developed by our Department of Health. In addition, all practitioners who work in this space are invited to become members of our community of practice, where we share peer education and experiences. We also have guest speakers from national and international viewpoints to continue to educate us as a group, and to ensure that our practice is consistent and in line with local and international standards.

[The Chair]

Do either of the other witnesses want to come in on that?

Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.

Cumberlege Review: Pelvic Mesh

Sarah Green Excerpts

Thursday 5th December 2024 Westminster Hall

[Sarah Green (Chesham and Amersham) (LD)]

It is a pleasure to serve under your chairmanship, Mr Stringer. I thank the hon. Member for Harlow (Chris Vince) for securing today’s debate. We are here because four years after being published, the Cumberlege review has not been implemented and there is still no redress scheme. I will turn in more detail to the progress made on those recommendations, but first I pay tribute to the many individuals who have campaigned so hard for so long to be heard, for their experiences to be taken seriously, to receive some sort of justice, and to know that the same harm will not be done to others. Some of them are in the Public Gallery today and I thank them for their tireless campaigning.

I also pay tribute to the right hon. Member for Godalming and Ash (Jeremy Hunt), when he was Health and Social Care Secretary, and to the former Member for Maidenhead, when she was Prime Minister, for commissioning the review in the first place in February 2018. Baroness Cumberlege has never stopped giving voice to those she encountered during the two years she led that review. She has gone to great lengths to keep this issue on the agenda. She is due to retire shortly and we will miss her. I would like to say how grateful I am, as I know others will be, not just for her advocacy on this issue but for her encouragement and support of hon. Members in this place to do the same. If I may be so bold, Baroness Cumberlege has played her part. It is now up to us in this place to hold this new Government to account and to ensure that her recommendations are implemented in full.

Let us not forget that the Cumberlege review was called “First Do No Harm”, because at its centre are people who suffered avoidable harm—harm done to them by our health system. I was first introduced to this issue by my constituent Carol. I have shared her story before and remain in awe of her dignity and desire to help others despite having experienced the most devastating medical trauma. She needed her MP to help her get a visa for the United States for urgent medical treatment during the pandemic because of the travel restrictions that hon. Members will remember. She had undergone a hysteropexy and a rectopexy using surgical mesh.

Instead of resolving Carol’s pelvic organ prolapse, the procedures left her with a serious autoimmune disease, struggling to walk and unable to continue her normal daily life. She had to take long-term sick leave from her job as a doctor and could not remember a day without pain. When she contacted me for help with her visa, she was seriously unwell and had been told that she urgently needed her mesh removed or her prognosis was not good. We managed to get her the visa she needed. She is now mesh-free following a successful removal, and she is the first person in England to have undergone successful rectal mesh removal. She is still suffering, but is no longer in the same danger that she was. She is clear that she was able to look outside the NHS and the UK only because her medical training and personal resources enabled her to find Dr Veronikis, who treated her successfully. I should say at this point that there needs to be more awareness of rectopexy mesh, which affects men, women and children.

Carol and others like her were given hope when the Cumberlege review was initiated, and again when it was published in July 2020 with its nine recommendations. I am sorry that to say that not enough progress has been made on those recommendations since. The reality is that only two of the nine recommendations have been implemented in full. The first was an apology, which was given as soon as the report was published. The second was to establish the office of the Patient Safety Commissioner.

Beyond that, things have stalled. Recommendations 3 and 4 called for an independent redress agency, and for redress schemes to be established for all three interventions. After originally rejecting those two recommendations, the Health Minister at the time asked the Patient Safety Commissioner in late 2022 to look at the options for providing redress for those who had been harmed by mesh and valproate. The commissioner’s report—the Hughes report—was published in February. I was present at its launch, and it really felt like a milestone; it felt as though progress had been made. Surely the Department would not commission that work if it had no intention of following through on a redress scheme.

That was in February this year. By the summer, when the election was called, the previous Government were still saying that they would respond to the report, so they never gave a formal response. To date, there has been no official response from the new Government to the Hughes report. In the words of the Patient Safety Commissioner:

“it is now urgent for the government to give those families some clarity. Many of them live with pressing financial hardship, as well as physical pain and disability…we must not compound the physical and mental harms experienced by these families by setting and raising false expectations if there is no intention to deliver on redress.”

[Mrs Hodgson]

I am grateful to the hon. Lady for covering the recommendations, which I was not able to do. That has relieved me somewhat. We have at last seen some compensation for the victims of Windrush, the infected blood scandal and the Horizon scandal. Does she agree that it is incumbent on the Government to treat this scandal with the same seriousness, fully accept recommendation 4 and put the redress scheme in place?

[Sarah Green]

I could not agree more. This is where I must pick up Carol’s story again. She tried to pursue her claim against her original surgeons through the courts, and she hit on an unexpected problem. She approached multiple legal firms who would not take her case because one or both of the surgeons were advising them on other cases and, as such, it would have been a conflict of interest. Indeed, the same surgeon who caused Carol life-changing injuries acted as an expert witness in an unrelated surgical mesh negligence case. The judge in that case said:

“he had cherry-picked those parts of the evidence which were supportive of the Defendant’s case and did not comment on those parts which were consistent to the Claimant’s. That is not the correct approach to be taken by an independent expert, whose duty is to the court. His evidence lacked balance and was unpersuasive.”

On this occasion, the judge called it out, but that is not the only instance of the medical profession closing ranks—it is not a unique occurrence. Such clear bias and conflicts of interest are a huge barrier to justice for mesh victims around the country.

The point of recommendation 3 in the Cumberlege review was to establish a non-adversarial avenue for redress after someone has been harmed in a healthcare setting. Both the Hughes report and, more recently, the Darzi report found that the current clinical negligence system is difficult for patients to navigate and prevents the healthcare system from learning from its mistakes. It is also eye-wateringly expensive for the taxpayer. If it is the dead hand of the Treasury blocking a redress scheme, Ministers would do well to reflect on that. As the Patient Safety Commissioner points out, the clinical negligence system is behind only nuclear disarmament and pensions on the list of liabilities on the Government’s balance sheet. I must ask the Minister when the Department will respond to the options outlined in the Hughes report, and when families can expect to see redress schemes up and running.

Recommendation 5 relates to the establishment of mesh centres around the country, and while such centres have been established, they get mixed reports from patients. My question on the mesh centres is about their outcomes. How is the Department ensuring a consistent service across them all, and how are outcomes being measured? With so many people reporting dissatisfaction with the centres, it is not enough that they exist; they need to be working well for the patients they are there to serve. Recommendation 6 relates to the MHRA, and it is clear that we still need the yellow card reporting system to improve. I would also welcome the Minister’s thoughts on progress against recommendation 7, which is about creating a central patient-identifiable database. To my understanding, it is still a work in progress.

The previous Government’s decision not to take forward the eighth recommendation, which is for a mandatory register, is disappointing. The recommendation called for

“Transparency of payments made to clinicians”

and

“mandatory reporting for pharmaceutical and medical device industries of payments made to teaching hospitals, research institutions and individual clinicians.”

I fail to understand why more progress has not been made on that. I know that campaigners have written to the Department asking it to consider a sunset Act that speaks to that recommendation, and I urge the Minister to chase a response to them.

[Graham Stringer (in the Chair)]

Order. The 10-minute time allocation is up. I now move to the official Opposition.