Terminally Ill Adults (End of Life) Bill (Twenty-fourth sitting)

Liz Saville Roberts Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Dr Shastri-Hurst]

It is very clear from subsection (7) that this must be an active step taken by the individual. There is a risk that we go down a rabbit hole in terms of—[Interruption.] I am sure my hon. Friend would like me to finish my point. We risk going down a rabbit hole in drawing examples. I raised the example of a cup, but of course there are much wider assistive technologies that can be used and are used in different jurisdictions. I gave the example to illustrate the point that this is an active act, not a passive act.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

The hon. Gentleman mentions subsection (7). Subsection (8) states quite clearly that it

“does not authorise the coordinating doctor to administer an approved substance to another person with the intention of causing that person’s death.”

I think the passive and active roles are quite clear between the two subsections.

[Dr Shastri-Hurst]

I agree entirely with the right hon. Member’s interpretation of the Bill.

There is a further unintended consequence of the amendment tabled by my hon. Friend the Member for East Wiltshire, which I am sure is not his intention but would sadly be the effect: were an individual to qualify under the Bill, should it pass and were the amendment to be adopted, they would inevitably be forced to take the final decision at an earlier stage. If there is a restriction that they can have no assistance whatsoever in performing the act, they will end up making the decision when they know that they have the entire physical strength available for them to do it, and that actually brings forward the point at which they choose to die to an earlier stage.

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

Liz Saville Roberts Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

I want to quickly indicate my support for the amendments tabled by the hon. Member for Bexleyheath and Crayford, amendment 290 in the name of the hon. Member for York Central and amendment 20 in the name of the hon. Member for Lowestoft about specific training on domestic abuse and coercive control.

I will now speak to my own amendments, which would require there to be a preliminary discussion before the signing of the first form. At the moment, the Bill allows someone to make the first declaration and state, “I wish to be provided with assistance to end my own life”, without any preparatory discussion about what that entails. It is significant that we heard evidence from Professor House—a professor of old-age psychiatry—that the preferences of the person doing the assessment can bias the capacity assessment. As he explains, we are much more likely to declare that somebody has capacity when they say they want to have the treatment we are offering them, but can we really be sure that the request is freely made and reflects the patient’s wishes?

The fact is, we still do not know from the framework of the Bill how the process would be implemented, but the assessor is likely to be one of a small number of doctors who are willing to do this work on the NHS or somebody who is working for a private provider. Research suggests that the assessing physician’s own personal values and opinions may bias their judgment of a person’s mental capacity. Effectively, research says that the doctor will say that a person has capacity for treatment when he or she wants them to have it or believes that they should. That is significant.

We see from other jurisdictions that the assessment process can quickly become a tick-box exercise in which proper consideration is not given to what might be going on behind the declared wish. In Oregon in 2023, only three people were referred for a psychiatric evaluation by the assessing doctor—down from 33% of people in the early years. It is clear that evaluators have become less cautious when they come to sign the initial paperwork. In California, less than 1% of patients requesting an assisted death are referred for a mental health assessment. These are significant warning signs for us.

I am aware that the hon. Member for Spen Valley has tabled a helpful amendment—amendment 419—to clause 6, which is the clause dealing with the requirement for proof of identity. As I said yesterday, this retrofits a requirement for a preliminary discussion before the process can proceed. It is good that the hon. Member recognises the point that a proper preliminary assessment must be done before the declaration is signed, but I simply do not understand why that should be in clause 6; surely it should be in one single, consistent place, here in clause 5, relating to when the co-ordinating doctor first meets the patient to witness their form. I hope we might recognise that if the principle is being conceded by the amendment tabled by the hon. Member for Spen Valley, we should put that change into its rightful place.

It is worth nothing that at the moment someone could get a proxy to sign for them. The proxy does not need to know the patient or be known to them; they just need to be a person of good standing in the community. They need to undertake no training at all. We have been talking during in this debate about the importance of training, but the proxy who signs on the patient’s behalf does not need to have any training to inform the judgment that they are

“satisfied that the person understands the nature and effect of the making of the declaration”.

Frankly, a stranger to the person, who is not a medic, can sign that declaration on their behalf. At the moment, they can do so without a preliminary discussion taking place. It is only after making that crucial declaratory statement that the co-ordinating doctor discusses the person’s diagnosis. I welcome the tabling of amendment 419, but I think it is in the wrong place. If we do not ensure that that preliminary discussion takes place when we are debating this group of amendments, it might be too late if amendment 419 does not pass, or if it is unsatisfactory, as I think it is.

There is another related problem. Amendment 419 would allow the co-ordinating doctor to confirm that a preliminary discussion has taken place. That means that the discussion could have taken place before the first declaration—in a sense, that is welcome, because that discussion should be taking place—but it does not have to take place with the co-ordinating doctor. The co-ordinating doctor, who is taking responsibility for the whole process of the assisted death for this patient, is not required to have this preliminary discussion themselves. They are not required to go through the very important process of properly discussing the assisted death and informing the patient of what it entails and what the other options are.

My amendment 359 would enhance the significance of the preliminary discussion. It would mean that the doctor who witnesses the declaration—who co-ordinates the process of the assisted death—has had the fullest possible discussion with the patient, and that they genuinely take responsibility for guaranteeing that the patient is fully informed and aware of all of their options. I urge the Committee to support these amendments as well.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I am very glad that amendment 427 has now been unstarred for today, because it develops on what I initiated yesterday with amendment 413, when we were discussing identifying the preferred language of the individual and whether that is Welsh or English.

Of course, if we have identified the preferred language of an individual, we would then take every step to make sure that we satisfy them and that we provide services in their preferred language. The amendment also recognises, when we are talking about specific individuals, possibly in a specific location, whether providing that is possible or not. I have tried to reflect that in using the terminology “all reasonable steps” to ensure that the practitioner has “fluent proficiency” in Welsh if that is the preferred language of the individual with whom they are conducting the initial conversation. Bear in mind, of course, that practitioners who can hold a conversation with fluent proficiency in Welsh will also be able to hold a conversation with fluent proficiency in English.

The “all reasonable steps” phraseology comes from legislation already extant in Wales in relation to educational tribunals, which again recognise that it may not be possible to find an individual with sufficient proficiency. We are trying to find a balance here between the pressure of time and being able to move ahead without having a bureaucratic thicket while also acknowledging that if we do recognise an individual’s preferred language, that we do take “all reasonable steps”.

As with amendment 413, amendment 427 is an amendment that I tabled having met an officer from the Welsh Language Commissioner’s office last week. It would establish a pathway for people for whom Welsh is their preferred language. Reflecting the comments from the Minister and the Bill’s promoter, the hon. Member for Spen Valley yesterday, I need to know—as do the Committee and the Senedd—whether this needs to be on the face of the Bill or whether it could be elsewhere.

I do not intend to push amendment 427 to a vote today, but we very much need clarity on this issue. I suspect that this may not be so easy to clarify as yesterday’s point. We are talking about the rights of individuals in one of the most difficult, emotional, intimate discussions of their lives. We need to reflect that those individuals have a clear right to use the language which they have a choice in law to use. We must make sure that we get everything correct in this Bill. Diolch yn fawr iawn.

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[Stephen Kinnock]

What we are trying to say is that the important thing here is to ensure that, when the Secretary of State brings the regulations forward, the hands of the Secretary of State are not tied too tightly, so that the Secretary of State is able to bring together the right people, to deliver the right training, to achieve the outcomes that are required through the regulations. Our assessment is that this amendment would, in essence, narrow the pool of people available to do the training. That would seem to pre-empt the idea behind doing this through regulations, which is to ensure that there is up-to-date training that is responsive to where we may or may not be two years down the line from the Bill having its commencement. It is about having that flexibility and that ability to build capacity.

Amendment 340 would place the Secretary of State under a duty to make regulations requiring a co-ordinating doctor to have specific and up-to-date training relating to reasonable adjustments and safeguards for autistic people and people with a learning disability. I note that amendments 185 and 186, if passed, would impose a duty on the Secretary of State to specify the training, qualifications and experience that the co-ordinating doctor will need.

The consequence of this amendment would be to require the Secretary of State to introduce a further requirement on the co-ordinating doctor—to have undergone training relating to reasonable adjustments and safeguards for autistic people and people with a learning disability. In considering whether the amendment is required, I note that the Health and Social Care Act 2008 requires that all CQC-registered health and adult social care providers ensure that their staff receive specific training on learning disability and autism.

Amendment 427 would impose an obligation to take all reasonable steps to ensure that the co-ordinating doctor is proficient in the Welsh language if services or functions under this legislation are to be provided to an individual in Welsh in Wales. The amendment does not make it clear who would be obliged to ensure that those steps were taken, or who would assess and enforce whether the “fluent proficiency” standard was met.

[Liz Saville Roberts]

What the Minister is referring to is the appropriate authorities, because areas related to training and regulation of registered practitioners in Wales are devolved to the Welsh Government. I will be touching on that later, but I would beg him to approach the amendment in that spirit.

[Stephen Kinnock]

I know that we are coming on to the question of appropriate authorities and I absolutely see and understand the spirit in which this amendment is suggested. The challenge is just about the potential for it to lead to operational issues, such as a reduced pool of registered medical practitioners who are able to carry out the function of a co-ordinating doctor under this legislation.

[Liz Saville Roberts]

That is exactly why the amendment includes a reference to “all reasonable steps”. It is with that in mind. This is reflected in other legislation where similar concerns have been expressed.

[Stephen Kinnock]

I thank the right hon. Lady for that. We go back to the point about the true significance of the 2011 Welsh Government Measure, which sets a basic foundation for the duty of the Welsh Government to ensure that Welsh language provision is provided through the Welsh NHS. There is absolutely no debate about that point; that is nailed on. The question is simply how we ensure, if we are to amend this Bill along the lines that the right hon. Lady suggests, that that does not create a lacuna or confusion in the system. I think we need to sit down and discuss that, to ensure that whatever we propose is watertight.

It may be helpful to note, as in discussion of amendment 413, that regardless of this amendment, under the Welsh Language Measure of 2011 the NHS in Wales has a statutory duty to deliver its services to the public in both Welsh and English. That legislation gives the Welsh language official status in Wales, and the Measure states that individuals in Wales should be able to conduct their lives through the medium of Welsh if they choose to do so. The Welsh Government’s active offer for health is intended to support all staff across NHS Wales to provide a service in Welsh for patients without their having to ask for it.

Under amendment 20, regulations made by the Secretary of State on the necessary training, qualifications and experience of the co-ordinating doctor would be required to include mandatory training relating to domestic abuse, including coercive control and financial abuse. Amendments 185 and 186, tabled by my hon. Friend the Member for Spen Valley, would require that regulations made by the Secretary of State on the necessary training, qualifications and experience of the co-ordinating doctor covered training related to assessing capacity and whether a person has been coerced or pressured by another person. But I note that, as my hon. Friend the Member for Spen Valley has said, she is minded to support amendment 20, which clearly would ramp up the requirement, as previously discussed.

As I have said, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed, but to clarify the intent of the Bill, we have worked with my hon. Friend the Member for Spen Valley in relation to amendments 185 and 186, which would place the Secretary of State under a duty to make regulations regarding the necessary training, qualifications and experience of the co-ordinating doctor. That would include specific training on assessing capacity and assessing whether a person has been subject to coercion or pressure.

I hope that that explanation and those observations have assisted the Committee. I thank hon. Members for their attention.

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Division 32

Ayes: 8

Noes: 14

[Liz Saville Roberts]

I beg to move amendment 144, in clause 5, page 3, line 14, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 5(3)(a) (training, qualifications and experience of coordinating doctors). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 145, in clause 5, page 3, line 24, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of requiring the Welsh Ministers to consult regarding the making of regulations under Clause 5(3)(a) (training, qualifications and experience of coordinating doctors). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 146, in clause 6, page 3, line 34, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 6(3) (forms of proof of identity). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 147, in clause 8, page 5, line 13, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 8(6)(a) (training, qualifications and experience of second doctors). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 148, in clause 8, page 5, line 28, leave out

“Secretary of State must consult such persons as the Secretary of State”

and insert

“appropriate authority must consult such persons as the appropriate authority”.

This amendment has the effect of requiring the Welsh Ministers to consult regarding the making of regulations under Clause 8(6)(a) (training, qualifications and experience of second doctors). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 149, in clause 11, page 7, line 13, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 11(1) (replacing the coordinating doctor on death etc). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 150, in clause 19, page 13, line 21, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 19(2)(b) (training, qualifications and experience of other doctors). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 151, in clause 19, page 13, line 31, leave out

“Secretary of State must consult such persons as the Secretary of State”

and insert

“appropriate authority must consult such persons as the appropriate authority”.

This amendment has the effect of requiring the Welsh Ministers to consult regarding the making of regulations under Clause 19(2)(b) (training, qualifications and experience of other doctors). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 152, in clause 20, page 13, line 35, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 20(1) (meaning of “approved substance”). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 153, in clause 28, page 17, line 3, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 28(1) (prescribing, dispensing, transporting etc of approved substances). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 154, in clause 30, page 18, line 12, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make a Code of Practice in Wales under Clause 30. A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 155, in clause 30, page 18, line 31, leave out “Secretary of State” and insert “appropriate authority”.

This amendment is linked to an amendment that allows the Welsh Ministers to make a Code of Practice in Wales under Clause 30. A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 156, in clause 30, page 18, line 33, leave out

“Secretary of State must consult such persons as the Secretary of State”

and insert

“appropriate authority must consult such persons as the appropriate authority”.

This amendment has the effect of requiring the Welsh Ministers to consult regarding the making a Code of Practice for Wales under Clause 30. A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 157, in clause 32, page 19, line 21, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 32(1) (powers to ensure assistance is available). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 158, in clause 32, page 19, line 22, leave out “Secretary of State” and insert “appropriate authority”.

This amendment is linked to an amendment that allows the Welsh Ministers to make regulations under Clause 32(1) (powers to ensure assistance is available). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 159, in clause 33, page 19, line 34, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 33(1) (notifications to Chief Medical Officers). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 160, in clause 33, page 20, line 16, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 33(2)(h) (notifications to Chief Medical Officers: notifiable events). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 161, in clause 35, page 21, line 30, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of requiring the Welsh Ministers to review the operation of the Act in relation to Wales. A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 162, in clause 35, page 21, line 35, at end insert

“or the Senedd Cymru (as the case may be)”.

This amendment has the effect of requiring a review carried out by the Welsh Ministers under Clause 35 to be laid before the Senedd.

Amendment 163, in clause 35, page 22, line 8, leave out “Secretary of State” and insert “appropriate authority”.

This amendment is linked to an amendment that requires the Welsh Ministers to review the operation of the Act under Clause 35.

Amendment 164, in clause 37, page 22, line 30, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 37(1) (modification of form of declarations and statements). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 165, in clause 38, page 22, line 34, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 38(1) (power to make consequential and transitional provision etc). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 166, in clause 38, page 22, line 37, leave out “Secretary of State” and insert “appropriate authority”.

This amendment is linked to an amendment that allows the Welsh Ministers to make amendments under Clause 38(1) (power to make consequential and transitional provision etc). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 167, in clause 39, page 23, line 9, at end insert

“or, where the regulations are to be made by the Welsh Ministers, the Senedd Cymru”.

This amendment has the effect of making certain powers of the Welsh Ministers subject to the affirmative procedure before the Senedd Cymru. A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 168, in clause 39, page 23, line 12, at end insert

“or, where the regulations are to be made by the Welsh Ministers, the Senedd Cymru”.

This amendment has the effect of making certain powers of the Welsh Ministers subject to the negative procedure before the Senedd Cymru. A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 169, in clause 40, page 23, line 23, at end insert—

“‘appropriate authority’ means—

(a) in relation to England, the Secretary of State;

(b) in relation to Wales, the Welsh Ministers.”

This amendment to the interpretation provision in Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales. A series of linked amendments change references to the Secretary of State to appropriate authority in order to allow the Welsh Ministers to make regulations in relation to Wales.

Amendment 170, in clause 42, page 24, line 21, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 42(2) (commencement). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

Amendment 171, in clause 42, page 24, line 26, leave out “Secretary of State” and insert “appropriate authority”.

This amendment has the effect of allowing the Welsh Ministers to make regulations under Clause 42(4) (commencement: transitional and saving provision). A linked amendment to Clause 40 defines appropriate authority to mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales.

[Liz Saville Roberts]

Diolch, Gadeirydd. As Professor Emyr Lewis of Aberystwyth University told this Committee in oral evidence, because this Bill is a private Member’s Bill it has not gone through the usual process of engagement with devolved Governments. I recognise that there will be amendments and changes and amendments to amendments, but I can speak to the principle here and we will have to adapt as we move ahead, as we are learning to do in this Committee.

The Wales Act 2017 formally acknowledged the Sewel convention by amending section 107 of the Government of Wales Act 2006 with a declaration stating—this is important—that

“it is recognised that the Parliament of the United Kingdom will not normally legislate with regard to devolved matters without the consent of the Senedd.”

It is in that spirit that work needs to be done to ensure that the devolved legislature in Wales and the complexities of legislating across reserved and devolved matters are fully considered and represented in the Bill. That is what these 28 amendments seek to do.

The use of the term “appropriate authority” does two things. First, in the here and now, it recognises the complexity of which competency lies where and with which Minister or Secretary of State. Secondly, it future-proofs the legislation, which we know is important. If and when there are any changes to devolved powers and competencies, the appropriate authority can move with time with the specifics of who is responsible for what.

Amendment 169 would amend clause 40 to include a definition of “appropriate authority”, the term that is used in my other amendments. It would mean the Secretary of State in relation to England and the Welsh Ministers in relation to Wales, where those powers are devolved rather than reserved. The amendment would provide for my other amendments, which would modify each relevant mention of powers provided to the Secretary of State in the Bill, to supply Welsh Ministers with equivalent powers in Wales.

Amendment 144 would amend clause 5 to allow Welsh Ministers the same powers as the Secretary of State in England to specify the training, qualifications and experience of the medical practitioner representing the co-ordinating doctor, because that matter is devolved to Wales. Amendment 145, similarly, would require Welsh Ministers to consult persons they consider appropriate before making the relevant regulations in Wales.

Amendment 146 would amend clause 6 to allow Welsh Government Ministers equivalent powers to make provision around proof of identity. Amendment 147 would similarly amend clause 8 in relation to the training, qualifications and experience of the independent doctor; we are talking, of course, about the co-ordinating doctor.

And so on, and so on. I assume that hon. Members now understand the purpose of my various amendments. I am more than willing to explain them further if necessary, but otherwise I will skip ahead.

Amendments 155 and 156 would modify clause 30 so that the Welsh Government are provided with a power to issue a code of practice over arrangements in relation to this legislation in Wales. That might be a useful route into further discussions on the specifications of the codes of practice; it might also be significant in discussions with the hon. Member for Spen Valley and the Government about how to recognise legislative differences in safeguarding and the Welsh language.

Amendments 157 and 158 are also important. They would provide Welsh Ministers with the power to make regulations under clause 32 to ensure that assistance is available through the health service in Wales. That is the responsibility of Welsh Ministers. As Committee members know, Senedd Cymru voted against a motion to support an assisted dying law by 26 to 19, with nine abstaining. There are a number of issues of which we need to be aware when bringing an England and Wales law into Wales. To ignore them would be irresponsible; we do so at our peril, frankly, especially given that clauses 33 and 34 will place explicit obligations on Welsh Ministers and the chief medical officer for Wales.

I put it on the record that I am disappointed that the Committee was not able to question the chief medical officer for Wales. I understand that he was invited. As there are matters in the Bill that we do not deal with every day in this place, that would have been useful. The Bill is unprecedented, certainly for a private Member’s Bill, in respect of the support, information and advice that the Committee needs, and that would have been an obvious opportunity for us to receive advice. I understand that the chief medical officer has advised on other pieces of legislation, including vaping, although that was Government legislation.

[Kim Leadbeater]

I can confirm that the chief medical officer for Wales was invited to give evidence. I do not know the circumstances of why he did not. If it is helpful for me or other colleagues to meet him, the offer is definitely open.

[Liz Saville Roberts]

I am grateful for the hon. Lady’s intervention.

Amendments 161 to 165 relate to clauses 35, 37 and 38. Amendments 161 to 163 would provide for the Welsh Government to review the operation of the legislation in Wales, which is vital to understand the specifics of the Welsh context and to learn and adapt as appropriate. To not allow Welsh Ministers that power would be to dismiss the particularities of health policy in Wales, as well as the additional implications of contextual differences. I strongly believe that we require an impact assessment to understand those differences properly within the context of health being devolved to Wales, alongside significant population differences in relation to demographics, age and sickness.

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[Danny Kruger]

I will speak briefly in support of the amendments. The right hon. Member for Dwyfor Meirionnydd may want to intervene to request that the Minister respond to a couple of additional points.

It is very uncomfortable that the Bill ignores the devolution settlement in this way. It is regrettable that it was introduced in its current form in the knowledge that the Senedd in Wales rejected assisted dying a month earlier. That suggests either that originally little thought was given to including Wales in the Bill or that, subsequent to the vote in the Senedd, it was decided that the Bill would be imposed on Wales. It would be helpful to have clarification about the original intent.

I very much echo the points that the right hon. Lady made. She is absolutely right about the appropriateness of giving the Welsh Government powers to manage the Bill’s operation and implementation if it passes. I would suggest a stronger process of implementation, reflecting the advice given by Professor Lewis, who gave evidence to us on Welsh law. In the light of the vote in the Senedd to reject assisted dying, he pointed out:

“The vote was against ‘the principles of assisted dying’, not only about how the NHS in Wales might be affected. It was a decision which the majority of the Senedd made about those principles, having reflected on the…issues raised.”

Professor Lewis proposed a straightforward way of respecting that vote while recognising that, if this Bill passes, it will apply to Wales. He suggests that we should

“provide for different commencement provisions in the Bill. As things stand, under clause 42 of the Bill, most of the Bill will not come into force until the Secretary of State has brought it into force, with the approval of the UK Parliament. Why not provide that the Bill will only come into force in Wales when and if the Welsh Ministers bring it into force with the approval of the Senedd?”

The objection might be made that cross-border issues would be created if Wales does not proceed but England does. Nevertheless, that is a matter that devolution can cope with. It will have to cope with the cross-border issues that will arise if the Scottish Bill does not proceed, and of course we have cross-border issues between Wales and England with respect to organ donation, so I do not accept that the two countries need a uniform policy. I do not know whether the right hon. Lady or the Minister wish to comment on the suggestion that the Bill should commence in Wales only if Ministers bring it forward with the approval of the Senedd.

[Liz Saville Roberts]

The evidence for a commencement date would be associated with an impact assessment in Wales. That is why it is so important that Welsh Ministers have the power to get the information they need and to implement any changes that come forward.

[Danny Kruger]

I absolutely agree with the right hon. Lady. There is a whole set of challenges, including in England, in respect of the impact assessment and the Bill’s commencement. Nevertheless, my suggestion is that we strengthen her proposal to empower Welsh Ministers to proceed. We should respect the devolution settlement and reflect what she describes as the “correct and rightful powers” of the Welsh Parliament to ultimately decide whether this law were to come into effect in Wales.

[Stephen Kinnock]

Amendments 144 to 171, tabled by the right hon. Member for Dwyfor Meirionnydd, relate to the powers and duties vested in the Secretary of State under the Bill. The purpose of the amendments is to change all references throughout the Bill from “Secretary of State” to “appropriate authority”. Amendment 169 defines “appropriate authority” as the Secretary of State in relation to England and as Welsh Ministers in relation to Wales. I note the intent of the promoter of the Bill, my hon. Friend the Member for Spen Valley, that the Bill’s provisions extend and apply to both England and Wales.

The amendments would mean that all the powers and duties vested in the Secretary of State are instead shared between the Secretary of State where they relate to England and Welsh Ministers where they relate to Wales. I would like to put on the record the Government’s continued commitment to devolution and to working with the devolved Governments. Having taken a neutral position on the Bill and the matter of assisted dying, the Government are still committed to working with the Welsh Government to resolve legal and technical issues and discuss constitutional matters that might arise thoughtfully and amicably.

With regard to the phrase “appropriate authority”, the challenge is that in each case throughout the Bill the appropriate authority would be determined by the devolution position of the clause in question—what is the underlying question that the clause seeks to address, and is that a reserved or devolved matter? I have discussed this with parliamentary counsel and others, and the concern is that a blanket provision of this nature may well be premature at this stage. Until we have finalised and determined the constitutional nature and impact of each clause, putting a blanket provision in place may run counter to that process.

[Liz Saville Roberts]

I have a simple question: in relation to the Sewel convention, if not now, when? We should have clarity on these points. I hope the Minister will forgive me if this is slightly longer than an intervention, but he gives me no option in the here and now but to withdraw the amendments, because I will not push them to a vote if it is likely to be lost. However, these are serious questions. How does this respect the Sewel convention? As a Back-Bench MP, I am not in a position to answer that, and I would have expected the Government to provide clarity on these points earlier than Committee stage. I assure the Minister that I will push this issue on Report if we do not have a satisfactory resolution on the Sewel convention.

[Stephen Kinnock]

It is, of course, the right hon. Lady’s prerogative to press amendments as and when she sees fit. I am simply flagging that terminology such as “appropriate authority” risks tying the hands of the legislative process in a way that could have perverse outcomes. A clause that should be the lead responsibility of Welsh Ministers could instead end up in the hands of Secretary of State due to the lack of clarity or relative vagueness of the term “appropriate authority”.

The Government’s suggestion is to work through each clause and be specific about the lead responsibility in each case—is it the Secretary of State or Welsh Ministers? We are open to discussing whether it is better to do it that way or with the terminology “appropriate authority”; we are simply flagging that there are risks associated with that term.

[Liz Saville Roberts]

Before the Minister sits down, will he commit to engaging with me on this issue to identify the specific needs in the spirit of what I have bought forward?

[Stephen Kinnock]

Yes, absolutely, and before Report. Let us ensure that we do that, and that parliamentary counsel is in the room. I am not a constitutional lawyer, so we definitely need people in the room who can speak to these issues. Of course, it also needs to be done in close dialogue with colleagues in the Welsh Government, particularly given what was said earlier about the need for a legislative consent motion.

--- Later in debate ---

[Kim Leadbeater]

I welcome this important debate about the impact of this potential legislation on Wales. I thank the right hon. Member for Dwyfor Meirionnydd for her valuable contributions. I also welcome the Minister’s commitment to meet the right hon. Lady and me for discussions with parliamentary counsel and the relevant authorities.

This is really important. The criminal justice system covers England and Wales, so it is important for the Bill to do the same, given that it disapplies the Suicide Act in certain very carefully defined circumstances. But health is, of course, devolved and the Welsh Government quite rightly make decisions on the Welsh NHS. I want to make it clear that I recognise that reality and its importance, and I am fully committed to observing the same conventions that the Government would if this were a Government Bill.

As has been said, I am working with UK Government officials to ensure that the right steps are taken at the right time, and I would expect to engage colleagues in the Welsh Government as the Bill progresses. Indeed, I really look forward to doing so and would be happy to visit the Senate if appropriate—although, as Members can tell, I need to work on my Welsh a bit. I look forward to continuing these conversations.

[Liz Saville Roberts]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 359, in clause 5, page 3, line 18, at end insert—

“(ba) who has conducted the preliminary discussion in accordance with section 4,”—(Danny Kruger.)

This amendment requires that the coordinating doctor has conducted a preliminary discussion prior to witnessing the signing of the first declaration.

Question put, That the amendment be made.

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

Liz Saville Roberts Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

Division 23

Ayes: 7

Noes: 13

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I beg to move amendment 414, in clause 4, page 2, line 25, at end insert—

“(3A) If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters.”

[The Chair]

With this it will be convenient to discuss the following:

Amendment 413, in clause 4, page 2, line 31, at end insert—

“(4A) In Wales, a medical practitioner conducting a preliminary discussion under subsection (4) must also discuss with the person their preferred language of Welsh or English.”

Amendment 415, in clause 9, page 6, line 20, at end insert—

“(2A) When making an assessment under subsection (2), the assessing doctor must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters.”

Amendment 416, in clause 30, page 18, line 25, leave out paragraph (c)

This amendment is linked to Amendment 417.

Amendment 417, in clause 30, page 18, line 32, at end insert—

“(1A) The Secretary of State must, within six months of the passing of this Act, issue one or more codes of practice in connection with the arrangements for ensuring effective communication in connection with the provision of assistance to persons in accordance with this Act, including the use of interpreters.”

This amendment is linked to Amendment 416.

--- Later in debate ---

[Liz Saville Roberts]

I rise to speak to amendment 413, which would require a medical practitioner in Wales who conducts a preliminary discussion under subsection (4) to discuss with the person their preferred language of Welsh or English. Amendments 414, 415, 416 and 417, tabled by the hon. Member for Ipswich, relate to adjustments for language and literacy barriers. I will speak to those amendments, but it is not my intention to divide the Committee on them. Although I am supportive of the drive behind the amendments from the hon. Member for Ipswich, they refer to a situation very different from that of Welsh and English, because the use of Welsh and English has particular statutory implications.

This is the first time I have risen to speak about how we need to tease out the Bill’s implications in the context of reserved and devolved powers, where justice and criminal law are reserved, while health and social care are devolved. Amendment 413 concerns the need, in my belief, to place in the Bill the requirement to determine whether a person wishes to use either Welsh or English in their initial discussions with registered medical practitioners. I firmly believe that this needs to be written into the legislation. Later amendments I have tabled to clauses 5 and 8, and new clause 18 and new schedule 2, also relate to the use of Welsh.

[Sojan Joseph (Ashford) (Lab)]

I fully support the amendments, but they say that the practitioner conducting the preliminary discussion should use an interpreter. Should the interpreter not also be available for all the interactions that follow on from the preliminary discussion?

[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.

[Rebecca Paul (Reigate) (Con)]

I rise to speak briefly to amendments 413 and 414, which are very thoughtful and well-considered amendments. I thank the right hon. Member for Dwyfor Meirionnydd for setting out powerfully and persuasively the importance of the subject. I support the amendments, but in reality we probably need to go further by specifying exactly who would be interpreting and making sure that it is regulated reliably. We do not want just anyone coming in off the street and doing that. That would not be appropriate, so we need to think about whether we need to go further. However, the amendments are a great starting point and would move us closer to where we need to be.

There is much subtlety in this debate. We talked a little in the first week of this Committee about the importance of language and the words that are used. We always need to be cognisant that when we are imparting information to people, particularly in a healthcare context, it is vital that we use language that people understand so that the ramifications of what is being discussed are clear. That is where these amendments become really important, because for those for whom English is not their first language, some of the subtlety and nuance around what a term means could be lost. Interpreters could be an important part of adding the clarity required to ensure that everyone going through the process understands exactly what it involves.

A 2024 Nuffield Council on Bioethics survey found that 39% of people think that assisted dying means withdrawing life support, 19% think that it means providing people who are dying with drugs that relieve symptoms of pain or suffering, and 13% think that it means providing hospice care. That echoes our debate a couple of weeks ago about how assisted dying can be interpreted in quite a few different ways. It is really important that we are clear in the language we use and what we mean by it.

We also find that among ethnic minorities there is sometimes a greater misunderstanding about palliative care. A 2024 King’s College London survey found that 6% of people believe that it is accurate that palliative care involves giving people medicines in order to shorten their life, but 18% of ethnic minority groups think that. We need to be cognisant of that. While 18% of people trust healthcare providers “not very much” or “not at all” to provide high-quality care towards the end of life, that figure increases to 30% for ethnic minority groups. While 6% of people say they have not heard of palliative care, that increases to 22% of people in ethnic minority groups.

It is important to recognise that the text of the amendment is much less stringent than that of section 7 of South Australia’s Voluntary Assisted Dying Act 2021, which strictly regulates interpreters. That goes back to my initial point. Under the South Australian law, they must be

“accredited by a prescribed body”.

They cannot be a family member, cannot stand to benefit from the will and cannot be involved in the patient’s healthcare. It is really important to ensure that a recognised professional is involved in this most important of processes and information sharing.

I support the amendments, although I think they need to go a little further. I look forward to hearing what other hon. Members have to say.

--- Later in debate ---

[Stephen Kinnock]

This group of amendments focuses on language and literacy barriers, including discussion of the use of interpreters and translations. If amendment 414 is agreed to, a registered medical practitioner who conducts a preliminary discussion with a person will first have to ensure the provision of adjustments for language and literacy barriers, including the use of interpreters. It may be helpful to note that, in all areas of practice, registered medical practitioners must uphold the standards in the GMC’s “Good medical practice”, which includes the provision of adjustments for language and literacy barriers.

The purpose of amendment 413 is to require medical practitioners in Wales who are conducting the initial discussion outlined in clause 4 to

“discuss with the person their preferred language of Welsh or English.”

It may be helpful to note that under the Welsh Language (Wales) Measure 2011, the NHS in Wales has a statutory duty to deliver its services to the public in both Welsh and English. The Measure, which gives the Welsh language official status in Wales, states that

“persons in Wales should be able to live their lives through the medium of the Welsh language if they choose to do so.”

The Welsh Government’s active offer for health is intended to support all staff across NHS Wales to provide a service in Welsh for patients, without their having to ask for it.

Technically, I would note that the amendment does not require the medical practitioner to conduct the initial discussion in the person’s preferred language, or to refer the person to another medical practitioner who can conduct it in the person’s preferred language, if they are unable to do so themselves. I have discussed that point with the right hon. Member for Dwyfor Meirionnydd and am more than happy to have a further discussion about how her amendment might work. The concern that I simply flagged was that we have the 2011 Measure and, as with so many of these things, there is a law of unintended consequences. An amendment that may be designed with the best possible intentions could end up disrupting the system and causing confusion or uncertainty, which I am sure she would not want. As with all these things, that is the challenge.

[Liz Saville Roberts]

We have raised already in the Committee the need for an impact assessment. I have also raised with the Minister the need for an impact assessment in Wales. The fact that we are having this conversation shows that there is an element of uncertainty about exactly whether it is necessary for this provision to be included in the Bill. I am concerned that it could be in a code of practice; I share the concern expressed by the hon. Member for Bradford West that we do not know how such codes of practice will operate, or whether we will have any say over how they operate. However, as the Minister has come to this in a spirit of co-operation, I hope that we will find some clarity. If it appears that it is better for Welsh language speakers that such a provision be set out in the Bill, I hope that he will agree in that respect.

[Stephen Kinnock]

I am happy to have that discussion, to better understand how it might all work in practice.

If amendment 415 is agreed to, it will mean that an assessing doctor making an assessment under subsection (2) must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters. As with amendment 414, the Committee may want to note the existing standards that all medical practitioners must uphold, which include requirements for the provision of adjustments for language and literacy barriers.

Amendments 416 and 417 would amend clause 30, which states that the Secretary of State may issue codes of practice on a number of matters, including on arrangements for ensuring effective communication and the use of interpreters. The amendments would impose a duty on the Secretary of State to issue one or more codes of practice in connection with arrangements for ensuring effective communication, including the use of interpreters, and to do so within six months of the passing of the Act. The requirement to issue any such code of practice within six months may prove unworkable. Under clause 30, it would be necessary to consult on the code of practice, make regulations to allow for the code of practice to come into force, have the regulations approved by both Houses of Parliament and then issue the code of practice, all within a six-month period after the passing of the Act.

As I have said, the Government will continue to remain neutral on whether or how the law in this area should change. As I have made clear, that is a matter for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to members of the Committee in considering the Bill and the amendments tabled to it.

[Kim Leadbeater]

On amendment 413, from the right hon. Member from Plaid Cymru—with apologies, I will not embarrass myself by trying to pronounce the wonderful name of her constituency—I am very sensitive to issues around devolution. We have had many conversations about it, which I am very happy to continue. The Minister has confirmed, as I understand it, the issue around the Welsh language, in that it would be covered by the Welsh language legislation, which states that individuals in Wales

“should be able to live their lives through the medium of the Welsh language if they choose to do so.”

I am very supportive of that. I am also happy to continue those conversations, where necessary, with the Minister.

I turn to amendments 414 and 415. I think several Members of the Committee have had the same message from my hon. Friend the Member for Ipswich, who was clearly struggling to get here on time. I, too, would be happy to move them in his name. They seem very sensible amendments, and I am happy to support them. Along with the GMC’s “Good medical practice”, which sets out the principles, values and standards of professional behaviour expected of doctors, it is a belt-and-braces approach to an issue that is very important, for reasons that several hon. Members have set out.

I cannot support amendments 416 and 417, however, because the timeframe that they would impose would not fit with the rest of the Bill. In reference to the two-year implementation period, that would just not be workable or possible.

[Liz Saville Roberts]

I will not press amendment 413, because I anticipate further conversations on these matters.

Amendment 414 agreed to.

Amendment proposed: 285, in clause 4, page 2, line 28, leave out paragraphs (a) to (c) and insert—

“(a) the person’s diagnosis and prognosis, in consultation with a specialist in the relevant illness, disease or medical condition,

(b) any treatment available and the likely effect of it, in consultation with a specialist in the provision of such treatment,

(c) any palliative, hospice or other care, including symptom management and psychological support, in consultation with a specialist in palliative care.”—(Naz Shah.)

This amendment ensures that a specialist carries out the assessment of the patient, the treatment options available and the palliative care options available, since these may not be known to a doctor coordinating an assisted death.

Question put, That the amendment be made.

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

Liz Saville Roberts Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Juliet Campbell (Broxtowe) (Lab)]

Q My question is for Professor Shakespeare and Dr Griffiths. Clause 4 of the Bill offers the opportunity for clinicians to instigate the discussion on assisted dying. Could you both tell me your view on that, please?

Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.

Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.

It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.

We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.

Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Q I have a question for Mr Amin. England and Wales is a single jurisdiction, but health is devolved and we have been discussing an amendment to clause 12 in relation to the court of a multidisciplinary arrangement, as opposed to the High Court. What are the implications for the Committee to understand in how this plays out, with health being devolved but the jurisdiction being single?

Yogi Amin: If the legal panel is not a High Court judge, but it is a multidisciplinary panel, then it just draws upon the people in the local areas. The Court of Protection operates in England and Wales and the judges apply the law the same way. That is what the panel would do in this case. Are you more concerned about the make-up of the panel or how they apply it?

[Liz Saville Roberts]

Q What I am trying to tease out is what is the responsibility of the Senedd and what is the responsibility of the UK Government. This is going to be challenging, given that health is devolved and has been for 25 years.

Yogi Amin: Are you talking about responsibility for resourcing it?

[Liz Saville Roberts]

Q Who has to decide who is appointed to what—which body?

Yogi Amin: Oh, I see. I suppose if there is a multi-disciplinary panel, the judiciary would appoint the individuals. It would be a judicial body, essentially. I do not know if you are talking about a tribunal that is multidisciplinary, although I know people shy away from tribunals.

[Liz Saville Roberts]

I think there is a question, because we are a Committee on a private Member’s Bill, as to how we ascertain these details.

[The Chair]

I think that is a matter that we may have to pursue elsewhere.

Terminally Ill Adults (End of Life) Bill (Money)

Liz Saville Roberts Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Can we just state what is really quite obvious? This House has voted for further debate in order to make workable and legally watertight legislation, and with that debate will come a full understanding of the resources needed for both England and Wales. Of course, in Wales, health is devolved and justice is reserved, and we need to understand the implications for that.

What has been a bit of an eye-opener for me, as a member of the Bill Committee—it is, of course, a larger Bill Committee for a private Member’s Bill than ever before—is the sense of the way in which this place operates. We have been given the role of producing workable legislation as best we can, on the advice of witnesses—there is a part of me that would like the Committee to receive more witnesses, but I am very aware that we have to move ahead with what we have been charged with doing: namely, producing that workable legislation—but we will not arrive today, next week or after we have heard from our witnesses at a complete, perfect, already-made understanding of what we need to do to make correct and workable legislation. For those things to be in place today, the House would need estimates and information that the Bill Committee has been charged with providing, which it will not be able to provide until we have heard the advice from the witnesses we are calling forward to give us a sense of what the resource needs and associated costs will be.

It will then be the duty of us all on Report and on Third Reading to ensure that the money and resources are sufficient for the legislation to be workable. With that in mind, I support this motion.

[Daisy Cooper]

Members in this House who have spoken against the money resolution say they are doing so because they have so many unanswered questions about the costs. Does the right hon. Lady agree that if Members vote against the resolution, they will never get those answers? That is precisely why the Bill should move forwards.

[Liz Saville Roberts]

Let us imagine what the public would make of our role in this place if this legislation were to fall at this point.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Order. We are going to drop the speech limit to three minutes.

Countess of Chester Hospital Inquiry

Liz Saville Roberts Excerpts

Monday 4th September 2023 Commons Chamber

[Steve Barclay]

My right hon. Friend is absolutely right about the way that the trial re-triggered a lot of pain and suffering for the families. What I found particularly powerful when talking to them was the fact that they discovered new information during the course of the trial, including harm to their children that they had not been told about hitherto. That was particularly concerning, and clearly serious lessons need to be learned from that. In terms of the support, one of the reasons for wanting to engage with them at the earliest opportunity was to ensure we are doing all we can to support them, and that is central to how I understand the judge will look to structure the inquiry to ensure that the wishes of the families are central to the approach that is taken.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Letby’s crimes freeze the heart, and I commend the Secretary of State for the inquiry being statutory. Although health is devolved, babies from across north Wales are regularly sent to hospitals in north-west England, including the Countess of Chester for specialist care and treatment. What assurance can the Secretary of State give to Welsh families that the statutory inquiry’s terms of reference will include cross-border patient safety and the safety of babies in hospitals possibly hours away from their families in Wales?

[Steve Barclay]

I am grateful to the right hon. Lady for raising that extremely important point, because the cases of five of the babies concerned in the trial were cross-jurisdictional. It is important that we take on board those lessons and look at how those cases that apply to a baby or family from Wales are captured, and I know that is something that Judge Thirlwall will give consideration to, shaped by her discussions with the families.

Cancer Medicines: Appraisals

Liz Saville Roberts Excerpts

Tuesday 13th June 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the matter of appraisals for cancer medicines.

It is a real pleasure to serve under your chairship, Mrs Harris, and I am always pleased to see you in the Chair, as you know. I am always greatly impressed by your commitment to these issues, and I have been pleased to support you in a small way, although always fully. I thank you for being here.

I thank Members for coming along to participate in this important debate. I am pleased to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place, and the SNP spokesperson, the hon. Member for Midlothian (Owen Thompson). I do not think there is a debate when the Labour spokesperson and I are not together, and we are, more often than not, saying the same thing. I am also incredibly pleased to see the Minister in his place, and it is no secret that he listens and responds to the questions we ask. I think he will find today that there is a united front pushing for the same things. Hopefully, we are pushing at an open door and he can respond in a positive fashion.

It is great that Members have the time to be here to support this matter. The UK’s health technology appraisal process must evolve if it is to keep pace with innovations in cancer treatment and improve outcomes. That is important because, across this great United Kingdom of Great Britain and Northern Ireland, one in every two people—half the people we meet out on the street—will be struck by cancer. My father had cancer on three occasions. He was a Christian and he survived all three times due to the prayers of God’s people, the skill of the surgeon and, ultimately, the care and love of the nurses and the family who supported him.

There are many global healthcare challenges, and the UK must emerge as a leading force. That is why this debate, which is specifically about appraisals for cancer medicines, is so important. It is essential that the Government, the NHS and the National Institute for Health and Care Excellence evolve their processes to address emerging access challenges—and there are challenges. We must have a process that moves quicker, focuses attention and delivers in the necessary timescale.

In July 2022, cancer waiting lists stood at over 320,000 across the UK, which is breathtaking. In addition, there are wider challenges with patients getting treatment in Northern Ireland. As you and others will know, Mrs Harris, I always try to give a Northern Ireland perspective. I am ever mindful that this is not the Minister’s responsibility, but what is happening in Northern Ireland encapsulates what is happening in the UK, Scotland and Wales. Waiting times for cancer treatment in Northern Ireland are the worst on record. Just a third of urgent suspected cancer referrals from GPs—only 35.6%—began receiving treatment within the 62-day target in the final quarter of last year. We have a big challenge, there is a lot to do and there is clearly a lot more for Northern Ireland to do. It is incredibly concerning that we have deteriorated further since those figures from 2021-22. Back home we have a crisis; a catastrophe is perhaps waiting to happen. It is unacceptable that almost 64% are waiting too long to start cancer treatment.

We in Northern Ireland have a cancer strategy that echoes the asks of many cancer charities across NI, including Cancer Focus Northern Ireland and Cancer Research Northern Ireland. I want to put on record my thanks to those cancer charities, which do fantastic work and are very good at contacting us—I do not think there is an MP here who does not have regular correspondence with them. The information they formulated and sent to myself and others before the debate was really helpful.

The cancer strategy was agreed in March 2022 but, over a year later, given stringent funding cuts from central Government, we simply have not had the finances to fully implement it. It still has the potential to play a crucial role in the transformation agenda of the health and social care service, and I believe that it will prove to be an exemplar of true healthcare for cancer sufferers, but we look to our Ministers back home and here in Westminster to ensure that we have the funds to make that happen.

Throughout the United Kingdom of Great Britain and Northern Ireland, cancer survival rates have risen thanks to improvements in planning, but levels of diagnosis and treatment lag significantly behind those in other countries for some cancer types, especially our five-year net survival rates.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I congratulate the hon. Member on securing the debate. He mentioned the significance of diagnosis. Medical radioisotopes are highly significant for the diagnosis and treatment of dangerous cancer cells, and it is important to secure a domestic supply of them, in terms of both security of supply and cost. I am told there is a shortage of supply in the offing in the United Kingdom, but there is a chance to secure a generating reactor at Trawsfynydd in north Wales, known as Project ARTHUR. I am sure the hon. Member agrees that it would be a positive step for cancer care in the UK if the UK and the Welsh Government were able to make progress together on delivering that project.

[Jim Shannon]

As so often in Westminster Hall and in the main Chamber, the right hon. Lady makes a positive suggestion, and it is one I know you would also support, Mrs Harris. We think it should be the Government’s intention to make every effort to deliver that project in Wales alongside the Welsh Assembly, because it will help us all in the United Kingdom. I always enjoy these debates because they bring us all together, focused on the issue and not the politics of it. If we can make life better for all of us in the United Kingdom through that project in Wales, let us do it. I do not know whether the Minister has had time to prepare, but hopefully his civil servants will give him some indication on that, and then we can look forward with a positive suggestion out of this debate. I thank the right hon. Lady for her intervention; it was very helpful.

Our poor international standing and lack of supportive frameworks mean that, in some cases, certain innovative cancer medicines are not submitted for UK regulatory approval or to NICE, further impacting access for UK patients. Resolving challenges in the appraisal process for licensed medicines will provide important benefits. First and foremost, there will be benefits to our constituents and patients, including, importantly, access to a wider range of treatment options and the potential for improved outcomes for those needing treatment.

Secondly, there will be benefits to the NHS, which will be able to deliver more efficient care and have permission to access a full range of licensed medicines. Thirdly, there will be benefits to the UK—this great nation—because resolving these challenges will improve its attractiveness as a destination for clinical research by incentivising research and development to focus on new and more challenging patient populations. How the Government respond to what the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) asked for is an indication of how we will move forward and lead the way.

One issue is that NICE guidance is not automatically applicable in Northern Ireland, although the Department of Health there does tend to adopt NICE guidelines and approaches. As such, the patient access challenges outlined will likely have the same impact on Northern Irish cancer patients as they will on cancer patients in England and Wales. To be a successful, leading force in cancer medicines and treatments, we must be united, not divided, in how we tackle these issues. I have always been an avid believer in the idea that no nation in this United Kingdom should be left behind, and I know the Minister has always been committed to that; whatever the subject of a debate, he encapsulates my thoughts on how important it is to work together.

There will be challenges for medicines in the cancer drugs fund. Following the update of NICE’s methods and processes, medicines currently in the cancer drugs fund will be measured against different criteria to those used when those medicines entered it. That could mean that, for some medicines, the likelihood of recommending routine NHS access is significantly reduced, so we need some reassurance on that.

The cancer drugs fund is a source of interim funding for cancer drugs in England. It provides access to promising cancer medicines via managed access arrangements. The Northern Ireland Department of Health confirmed in 2018 that medicines approved by NICE for use through the cancer drugs fund will be equally accessible in Northern Ireland through a separate budget pot, which I urge the Minister to defend against any future budget cuts. I know that is not the Government’s intention, but it would be nice to have that reassurance today so that we can report it to everyone involved back home.

Given that medicines are to be reappraised under the NICE guidelines, they will not be appraised against the same criteria. I have ascertained that NICE is not presently considering any flexibility for medicines in that situation. For certain medicines, that will mean that the likelihood of recommending routine NHS access will be further reduced, and probably one of the major asks in this debate is to ensure that that does not happen.

The Government confirmed that 43% of medicines currently in a period of managed access through the CDF include the end-of-life modifier. Issues remain around who can access what medicines. New patients will not be given access to cancer drugs fund-approved drugs if they are not originally taking the drug at the first NICE regulation. Sometimes there needs to be flexibility in how drugs are allocated. It is not just a black and white tick-box exercise—it never is. We need to focus on the circumstances of the individual, the patient and our constituents—I know from his responses to questions that the Minister understands that, and we seek reassurance that that would be the case. The issues I have outlined mean that new cancer patients have no access to old drugs, so future eligible patients will lose out on options in their treatment plan. We seek reassurance that, when it comes to their treatment plan, eligible patients are given options to ensure that they are not debarred by some paper exercise—if I can use that phrase, with great respect.

NICE must act to address the impact that updates to its methods and processes will have on medicines currently in the CDF, especially in Northern Ireland, where these methods are usually followed to the rule. Ensuring that medicines in the CDF can be assessed against the same criteria under which they were initially recommended for use in the NHS will increase confidence for cancer sufferers that the medicines to which they so desperately need access are available. If the Minister has one positive reply for us today, that is the one we would ask for, because we know that it would bring relief to many people right away.

There will always be issues surrounding cost and the cost-effectiveness of financing a drug. The 2019 voluntary scheme for branded medicines pricing and access is an agreement between industry and Government that aims to meet the need to keep the NHS medicines bill affordable. I know there is a need to do that, but there is also a need to make the medication and drugs available, with the ambition to grow the life sciences sector as well, which we must do and have done before. The partnership between Government, pharmaceutical companies and universities is one that I recognise from Queen’s University Belfast and Ulster University in Northern Ireland. Those two universities have great relationships and partnerships with pharmaceutical companies that are to the fore of finding new cures for disease.

The scheme operates through rebate mechanisms, where companies pay a percentage of their net sales back to the Government. Historically, the rates in the voluntary scheme have averaged well below 10% of revenues, but as of 2023 they are 26.5%—wow! That rapid rise was driven by several factors, including the post-pandemic demands on the NHS and the fact that the UK is now widely out of line with comparator countries. Not only does the current level of repayment risk costing the UK economy far more than it saves, but it has an incredible impact on patients’ access to medicines. Again, we need some reassurance from the Minister on that.

For the UK to continue to be an attractive destination for clinical development, which brings benefits to all areas of the United Kingdom of Great Britain and Northern Ireland, a solution to the cost challenge must be found. In presenting the facts of the case and the evidential base, all of us present are very much solution-based, and our questions to the Minister will be about finding solutions.

Further combination therapies have been instrumental in combining medicines to attack different types of cancer and cancerous cells. There are still multiple unresolved issues around the value assessment, which I will briefly list, and I thank Sanofi for making me aware of this information before the debate—indeed, some organisations have been incredibly helpful in giving us a train of thought and a focus for requests, and hopefully we can be solution-driven.

Combination therapies undergoing appraisal can be found not to demonstrate cost-effectiveness or value for money. Furthermore, pricing barriers have proven problematic for manufacturers when two therapies are involved. The manufacturer of the new medicine has no influence over the price of the new therapy, meaning the total cost may go over the cost-effectiveness threshold. We all regularly meet lobby groups and pharmaceutical companies, which tell us that the NICE process is making it difficult for them to advance their medicines to provide relief and find a cure. I know that Governments have to be responsible and do not have the power to spend money willy-nilly, but it is important that we grasp what the manufacturers and pharmaceutical companies are trying to achieve.

Combination therapies can offer people suffering with cancer a better quality of life, a better response to treatment and—this is really what it is all about—a better chance of survival, which is so important. The UK must learn from countries such as Spain and the US in creating a more cohesive and agile path from pre-trial to treatment. Those are just two countries that have an excellent methodology for trying to advance. Hopefully, the Minister will reassure us that we in the United Kingdom are doing the same as other countries. The US dominates certain research, such as in immunotherapy, followed by China. The UK is in third place, with a global share of approximately 5%. Third place is not bad—it is a bronze medal—but we would like to move a wee bit further beyond that, and I think it is possible. The ideas are here, the technology is here and the will is here. We just need to drive it.

We must learn to strengthen links between UK academia, clinical medicine and industry, at a time when it is being reported that the number of industry-backed clinical trials has decreased by 41% since 2017. I know there has been a focus on covid, with everybody trying to find the cure, but let us get back to where we were before and lead the way again. I do not see how we can say that we are doing more to expand the variety of medicines that we offer patients, when the number of trials has declined by almost half.

I cannot emphasise enough how important it is that we ensure that the United Kingdom remains an environment where companies want to bring medicines forward for NICE appraisal in the first place. Being able to approve access to innovative cancer medicines is critical if we are to improve patient outcomes. The UK currently ranks 16th out of 18 comparable countries for five types of cancer, and it is important that we address the challenges with appraising cancer medicines to ensure that patients continue to access the new, innovative treatments in the pipeline. It is so important to get that pipeline concluded and the product line out the other end.

What is the solution? First, it is about exploring and adapting to the challenges and issues that must be overcome in terms of costing, combination therapies and fairer price negotiations for manufacturers and the NHS. The UK Government—our Government—must, in collaboration with NICE and the NHS, work with industry and patient organisations to develop and trial a sustainable solution.

Cancer has killed too many in recent years. Advances in medication and medicine have increased the likelihood of survival—not when my dad had cancer 40-odd years ago, but today. Cancer affects too many loved ones; there are too many horror stories, which we, as Members of Parliament, hear regularly. We do not always get the good stories; it is usually the bad stories about what has gone wrong. As MPs, our duty is to bring them forward on behalf of our constituents and highlight them, as we have done today.

The NHS can work closely with the cancer drugs fund to improve patient access to the good and decent drugs that will help them, and ensure that nobody is left behind. I sincerely thank all the organisations that have been in touch with me and others ahead of the debate on an issue that is so important and affects so many. I say a special thank you to Sanofi for its efforts and support and for answering my questions and queries.

We in this United Kingdom of Great Britain and Northern Ireland have real potential to ensure the best outcomes for constituents and patients. I look to the Minister for reassurance, which I am sure is coming, that we will continue to do all we can to work with the devolved nations—Scotland, Wales and Northern Ireland—and NICE to improve people’s lives. Our job is to do just that. If we can improve people’s lives and help them to live longer, what a joy it will be to have those answers.

--- Later in debate ---

[The Minister for Health and Secondary Care (Will Quince)]

It is a pleasure to serve under your chairmanship, Mrs Harris. I thank the hon. Member for Strangford (Jim Shannon) for securing this important debate on appraisals for cancer medicines and thank all Members who have contributed to a hugely valuable discussion.

The hon. Member said that he thought the debate would be a presentation of a united front, and that has been demonstrated today. He also said that he hoped he was pushing at an open door. On many of the points he made, he certainly is doing that. He spoke with great passion and empathy for those who suffer from this terrible disease, and I commend him for bringing this issue to my attention and the attention of the Government. Unusually, for a Westminster Hall debate, I have some time to respond to the points, so as ever, I will offer all Members who would like it a meeting to discuss any of the issues that have been raised in greater depth, but I will try to cover them in as much detail as I can in my response.

According to Cancer Research UK, one in two people will develop cancer at some point in their lives. There are around 290,000 new cancer diagnoses a year, equating to around 780 every single day. I am acutely aware as a Health Minister that when we use statistics such as these, we must remember, as the hon. Member for Mitcham and Morden (Siobhain McDonagh) eloquently and articulately pointed out, that these are people; these are human beings who we all know and love—a dear friend, a loved one, a member of our family. It is important when we talk about statistics that we do not lose sight of that.

Let me turn to the hon. Lady’s contribution. She made a powerful speech, and it is not the first that I have heard from her and had the good fortune to respond to. She rightly made a powerful and emotive case on behalf of her sister Margaret and all those who suffer and have suffered with brain tumours. I think she knows my commitment to doing all I can to improve the situation in relation to brain tumours. In truth, I think I have spent more time on this particular issue in my time as a Minister than I have on any other condition under the umbrella of the major conditions strategy. I will continue to do so, not just because of the powerful case that she makes, along with others across this House and campaigners, but because I know there is an injustice in that this area does not get the attention it deserves, and I want to address that. I have raised it with the chief scientific adviser, who heads up the NIHR, and it is important to also raise it with NICE.

I have met the hon. Lady, and I would be happy to do so again. She makes a powerful case that we need the pharmaceutical industry to step up in this space, and I am keen to work with her to see what more we can and should do to make sure that happens. Finally, let me thank her for her kind words about my leaving Parliament at the next election. I assure her that I will do all I can for as long as I am in this role to help her achieve the objectives she seeks.

I join the hon. Member for Strangford in paying tribute to all the cancer charities—some very large and some very small—that work to support patients up and down this country. He is right to draw the House’s attention to that.

The NHS has seen enormously high demand for cancer checks. More than 2.8 million people were seen in the 12 months to April this year, up by 26% compared with the same period pre-pandemic. That returning demand is positive after the falls we saw during the pandemic. We are working closely with NHS England to reduce the amount of time people are waiting to receive a diagnosis, and we are making progress; it is not as fast as I would like, but we are working very hard to make progress. The latest published figures show that the 62-day cancer backlog for the week ending 30 April stood at 22,533. It has fallen by 34% since its peak in the pandemic, but I am acutely aware—this preys on my mind every single day—that it amounts to more than 22,000 people, too many of whom have had to wait 62 days and are struggling with the anxiety of waiting for either a diagnosis or the all-clear.

The hon. Member for Strangford set out the scale of the challenge we face, which I touched on there, but I will move on to what we are doing to address this. The Government are spending more than £8 billion on the elective recovery fund, £700 million on the targeted investment fund and, importantly, as has been referenced in a number of contributions, £2.3 billion of capital funding has been made available to increase our diagnostic capacity—those 160 additional community diagnostic centres. I was able to give the hon. Member for Denton and Reddish (Andrew Gwynne) some good news on that for his constituency recently.

We have 108 community diagnostic centres operational at the moment. I announced a further number only last week, and we have another eight coming on stream. We want to get to 160 centres by 2025, but I want to do it as quickly as we possibly can. There will also be additional surgical hubs. Those CDCs have already since July 2021 delivered over 4 million checks, so we have to get those open and operational as quickly as possible.

[Liz Saville Roberts]

The Minister is of course aware of the proposal for a medical radioisotopes facility in north Wales, which is crucial for diagnosis in the future. I wonder whether he is also aware that this would complement Bangor University’s Nuclear Futures Institute and its planned new medical school. We are all aware of the shortage of clinicians. I am concerned that the centre for doctoral training in nuclear energy futures at Bangor, which plays a vital role for PhD projects and their funding, has had its application for renewal rejected by the Engineering and Physical Sciences Research Council.

I would be grateful if the Minister clarified whether he is aware of this issue. I appreciate that it is local, but when we are looking at the future, these local solutions will be absolutely critical. If he is not aware of this, could he commit to raising it with the Department for Science, Innovation and Technology and his counterparts in the Welsh Government? Most importantly, could I plead with the Minister for a meeting with him to discuss the wider issue of radioisotopes availability, their cost and the security of supply in the future?

[Will Quince]

The answer to both is yes, and yes. If the right hon. Lady would write to me with the details, I will certainly raise the issue and meet to discuss radioisotopes specifically.

NHS England is working very closely with the independent sector to ensure that we are using all the available capacity to us to deliver both diagnoses and treatment as quickly as possible. The Government announced the major conditions strategy on 24 January, which is important for cancer as it draws on previous work on cancer. Over 5,000 submissions were provided as part of our call for evidence last year, and we will continue to work closely with stakeholders, the public and patients—whose voice should never be forgotten, as the hon. Member for Strangford rightly points out—and the NHS in the coming weeks to identify the actions we need to take as part of the strategy that will have the most impact.

Specifically on NICE appraisals, the hon. Member raised several concerns about the way in which cancer medicines are appraised. Members will know that NICE is rightly independent of Government. It is an expert body that makes evidence-based recommendations to the NHS on whether new medicines should be routinely funded by the NHS on the basis of on assessment of clinical and cost effectiveness. Those recommendations then develop, mainly for the NHS in England, but as was mentioned, they are usually adopted by the NHS in Wales and in Northern Ireland. Scotland has its own system. This is a difficult matter to raise, but it is important to point out that every pound that we spend on a new medicine is money that is not available for other services, and the NICE appraisal process ensures that NHS funds are spent in a way that provides the greatest health benefit to society. That is a hugely difficult job, which NICE does with great professionalism.

Again, it is important to point out that NICE appraises all new medicines and that its approval rate for cancer medicines has consistently been around 90%–I think that the latest figure is 92%. It is absolutely right that when NICE recommends a medicine for the NHS, it is available for patients and NHS England is required to fund that drug or treatment. I know that the NHS in Northern Ireland and in Wales has adopted a similar model.

NICE’s methods and processes for assessing new medicines are internationally respected, and they have evolved over time to ensure that they reflect best practice and keep pace with advances in medical science. As my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) pointed out—I will come on to this in some detail— NICE concluded a comprehensive review of its appraisal methods and processes last year, which it carried out with a high level of ambition and transparency. As she pointed out, changes include the introduction of a new severity modifier, which will give NICE more flexibility to recommend medicines for more severe diseases at higher prices. The severity modifier replaces the previous flexibility for end-of-life treatments.

My hon. Friend raised some concerns about that, and I always listen very carefully to what she says on this and many other issues, especially given her personal experience and campaigning. She is right to say that the situation is hugely complex, and her point about data is a really good one, because decisions need to be informed by good-quality data. I would be happy to meet her to discuss how we can ensure that we are collecting data not just on a regional basis, but nationally, so that we can make sure that NICE is making informed decisions. As she rightly points out, we need to ensure that patients and their voices are always at the heart of all the decisions made by not just the Government, but NICE. I would be happy to meet her to discuss that in greater detail.

On the broader point about whether the introduction of a severity modifier in place of an end-of-life modifier will affect cancer drugs specifically, analysis was carried out by NICE in developing the modifier. It indicated that the vast majority of cancer medicines that would have been eligible for the end-of-life modifier would also be eligible for a weighting under the severity modifier. I am happy to meet my hon. Friend and any other Members who would like to meet NICE to discuss this issue further.

NHS Winter Pressures

Liz Saville Roberts Excerpts

Monday 9th January 2023 Commons Chamber

[Steve Barclay]

Let me first congratulate my right hon. Friend—along with the whole House, I am sure—on the knighthood that he received from His Majesty.

According to the analysis we have received, the variant in China is the same as the one in the United Kingdom. On the other hand, the data shared by China is often not as clear as we would like. That is why, over the Christmas period, my right hon. Friends the Prime Minister and the Secretary of State for Transport announced proportionate measures involving covid tests for travellers and, in particular, sequence variant testing for those coming into the UK, in order to identify any new variant quickly.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Strikes by nurses and ambulance workers are a last resort for overworked staff, who fear that patient safety is suffering as a result of increased demand and staff shortages. Instead of providing proper pay increases, the Labour Welsh Government have responded by offering Welsh health service staff tokenistic one-off payments, and, reportedly, the right hon. Gentleman’s Government are considering doing the same in England. Can he guarantee that if that approach is taken, one-off payments will be recognised as support with the cost of living crisis rather than proper pay increases, and will be treated as such for tax and benefit purposes?

Huntington’s Disease

Liz Saville Roberts Excerpts

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn (Leeds Central) (Lab)]

I beg to move,

That this House has considered Huntington’s disease.

It is a great pleasure to serve under your chairmanship, Mr Robertson, and to see the Minister in her place. I thank all the Huntington’s disease organisations in England, Scotland, Wales and Northern Ireland for the vital work they do and for the help and expertise they have given me in preparing for this debate. Back in May I tabled early-day motion 72 on Huntington’s, and I am really grateful for the support it received from Members on both sides of the House. My colleague Jackie Baillie tabled a similar motion in the Scottish Parliament, which I am told secured record support. I should also declare that my interest in this subject is the direct result of knowing someone who has the disease.

Huntington’s is a rare genetic neurodegenerative disorder that, over time, basically stops the brain working properly. It affects some 8,000 people in the UK, but around 32,000 people are living at risk of developing it for the simple but deadly reason that Huntington’s can be passed from generation to generation. This means that a diagnosis of Huntington’s does not just affect the person who has it; it also affects their children, who have a one in two chance of carrying the gene. There is a predictive genetic test to find out whether someone has the faulty gene that causes the disease, but I am told that on learning of, say, their parent’s diagnosis, the vast majority of people do not want to know and prefer to travel in hope. For all those reasons, it is a devastating diagnosis, because there is no cure, and there is only limited palliative care.

Imagine for a moment the questions that go through somebody’s mind when a loved one gets the diagnosis. How long has my spouse or my parent got? What is going to happen when they can no longer look after themselves? Which of our children has it? Should we tell the rest of the family? Will my loved one’s personality change, so that they end up shouting at me or even assaulting me? In many ways that is probably the most difficult thing to cope with, because we are losing the person we love not just physically but emotionally. This horrible disease makes them no longer the person they once were, and there is nothing—absolutely nothing—we can do about it.

It is very hard fully to convey what this means, so let me quote a letter I have received from someone who writes of

“being forced to witness the agonisingly slow degeneration of someone you have known and loved for nearly forty years, and how hard it is to keep remembering the person that they once were. That man—a loving, supportive spouse and utterly devoted father—was erudite, kind, attentive, with a wickedly dry sense of humour. He bears little resemblance to the unsteady figure with unclear speech, alternating between bouts of aggression, anxiety and apathy, with whom I now share my home.”

That is what sufferers and their families have to live with.

The symptoms of Huntington’s are many, and the list I am about to give is by no means exhaustive. They include early onset dementia; difficulty concentrating; lapses of memory; cognitive decline; depression; anxiety; obsessive disorders; psychosis; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; difficulty moving; mood swings; personality changes; irritability; apathy; disinhibition; problems swallowing, speaking and breathing; fatigue; loss of weight; incontinence; and sexual dysfunction. In the later stages, full-time nursing care is needed.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I am immensely grateful to the right hon. Gentleman for giving way, and I congratulate him on securing the debate. He is speaking very movingly.

One thing that has been emphasised to me is how important it is to remember the carers—particularly the family carers—affected by this condition. I am sure the right hon. Gentleman will join me in impressing upon the Minister the importance to families who are going through this experience of granting the facility of respite care for family carers at a time of real carer shortages.

[Hilary Benn]

I am profoundly grateful to my right hon. Friend for attending this debate, and I agree completely with what she has said. I will come to the question of the needs both of people who have the disease and of those who care for them.

In short, those affected will lose the ability to walk, talk, eat, drink, make rational decisions and care for themselves. Partners and children are turned into carers, and children know that they themselves have a 50% chance of going through what they see unfolding in front of their eyes—a prospect that often results in self-harm, low esteem, low confidence, low mood, anxiety or depression.

Professionals, and indeed families, can sometimes mistake Huntington’s for other conditions such as Parkinson’s or Alzheimer’s. That is especially true when the family has no idea that Huntington’s exists in their family, and those living with it face a great deal of stigma and discrimination. It is not uncommon for a loved one to be wrongly accused of being drunk or on drugs due to their symptoms. The symptoms can start at an early age, and about 5% to 10% of sufferers experience them before the age of 20, although they usually appear between the ages of 30 and 50, and some 10% of sufferers develop them after the age of 60. The average survival time from first onset of symptoms is about 15 to 20 years.

Needless to say, people living with Huntington’s and their families face extraordinary challenges in their lives because the condition affects everyone who comes into contact with it: those experiencing symptoms and their families, those who have tested positive but do not yet have symptoms, and people at risk of developing it. Even those who test negative can suffer from survivor guilt, and in some cases might be ostracised by their families.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in this Chamber. As the DUP health spokesperson, I wanted to add my contribution today. I congratulate the right hon. Member for Leeds Central (Hilary Benn) on setting out the case so well and on doing so from a passionate, intimate and obviously knowledgeable point of view. It was hard to listen to some of the things he said, not because he does not put them over right, but just because, when we hear the emotion in his voice, we understand that he has a very personal interest in this subject. So, again, I thank him personally, as I think we all do in the Chamber today. I just want to add my contribution and, as I always do, to give a Northern Ireland perspective.

This is a difficult subject to deal with. As the right hon. Gentleman said, this disease does not just affect the person who has it; it can potentially affect the children as well. I think that makes things harder, because if someone has any doubt whatever as to whether they carry the gene, that will impact what they do when it comes to marriage, having children and having relationships, but also what will potentially happen to them in the latter part of their life. Therefore it is important that we take the right action to make our services better, and that is what we want to try to do.

May I say what a pleasure it is to see the shadow Ministers, the hon. Members for Leicester West (Liz Kendall) and for Paisley and Renfrewshire North (Gavin Newlands), and to see the Minister in her place two days running? We are doing well here, so we are. The Minister tries extremely hard to answer the questions that we put forward, so I thank her for that. I am very pleased to see the Labour shadow Minister—a fellow Leicester City supporter—in her place. We won 3-0 last night, which was a good result. That is by the way and nothing to do with this debate; it is just for the hon. Lady and me to glory in that victory, as we do, personally and collectively.

We need to have better mental health services for patients suffering with this disease and to encourage more funding into research. The right hon. Member for Leeds Central was right about the importance of research; I will comment on research later, but he was right to mention the need for it. In a way, this debate follows on from some of the questions about research in the debate on pancreatic cancer that I secured in Westminster Hall yesterday. We have to focus on research in a deeper and stronger way, and I look forward to hearing the comments of others about what we can do for our constituents.

Health is a devolved matter for Northern Ireland and is not the Minister’s responsibility, but I want to sew a Northern Ireland perspective into the debate. I will replicate the perspective heard in the right hon. Gentleman’s comments, and talk about what we in the United Kingdom need to do in Northern Ireland, Scotland and Wales. I look forward to hearing from my friend and colleague in the SNP, the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar), who always makes a significant contribution on health issues.

Huntington’s services across the UK lack efficiency and funding, especially in Northern Ireland. That is not the Minister’s fault, but it shows what this is all about. One of my constituents made me aware of the fact that there are only two Huntington’s-qualified nurses across the whole of Northern Ireland—for a population of 2 million. Wow! It shocks me to the core when I read that and have to convey the situation in Northern Ireland. As a result of the right hon. Gentleman raising my awareness of this matter, I will take a deeper interest in it from a Northern Ireland perspective. I will follow this up with Robin Swann, the Northern Ireland Health Minister.

In that population of 2 million, the rate of Huntington’s has increased from 6.4 people per 100,000 in 1991 to 12 per 100,000—almost doubling over that period of time. Approximately 223 people have been diagnosed with the disease back home, leaving many with the possibility of getting it genetically. That is one of the worst things: someone could be carrying the disease without knowing—this rare condition is also known as the disease of families.

The hon. Member for Blaydon (Liz Twist), who has left her place, is the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Huntington’s is a rare condition, and sometimes the symptoms are not as prevalent, making it even more essential for people to be aware of them. I would subscribe to the hon. Lady’s line of thought that this should be categorised as a rare disease: statistically, the numbers suffering from this disease are not large, and it is rare in the effect that it has. Government have a policy to deal with rare diseases, so maybe it is time to consider this as one of those, Minister.

Huntington’s Disease Association Northern Ireland has been instrumental in providing support for families—it is not all doom and gloom in Northern Ireland for the families and those who support them. The association has a lovely motto: “Families at the heart of all that we do”. That conveys the importance of what it does, bringing families together so that they can help and reach out to each other. The right hon. Member for Leeds Central referred to that point, and I would reiterate it.

The organisation offers care to loved ones and encouragement throughout the process. Not only that, but it provides hope for those dealing with Huntington’s. Currently, 15 clinical trials of different treatments are under way. We should take some encouragement from that and have hope of a cure. With 15 clinical trials taking place, there is hope that one day soon—not too far away—we will have a cure. If we have that cure, we can deal with these issues better personally.

Sorcha McGuinness of HDANI has stated that, by the late stages of the condition, people will require 24-hour care, as the right hon. Gentleman referred to. They will be unable to move, speak or sometimes even swallow. Other diseases we have spoken about, such as motor neurone disease, are similar.

[Liz Saville Roberts]

The hon. Gentleman is speaking movingly and powerfully. Members will be concerned when we hear from constituents who are being refused personal independence payments. The procedure that applicants—people with Huntington’s disease and their families—have to go through to get PIP, to which they are entitled, is almost a test of their perseverance. As MPs, many of us have to deal with these things, but there must be a better way of dealing with families affected by conditions such as Huntington’s. Given what they are likely to need and that their care needs are so great, we must find a better way of dealing with this issue.

[Jim Shannon]

I thank the right hon. Lady for her intervention, which clearly outlines another issue. It is not always health alone that is an issue; it is also about not being able to work again, as the right hon. Member for Leeds Central said. There is the financial impact on families. There is going on to benefits, which are probably alien to those applying. The system needs a wee bit more compassion for those who are under financial pressure. When they state that they have Huntington’s disease, the reality of what that means should figure in how they are helped through PIPs and other benefits. More often than not, we—elected representatives—come to an acknowledgment and knowledge of those matters through constituents who apply for PIPs. We understand a bit better what they are doing. There is one lady in my office who does nothing but benefits—five days a week. That gives Members an idea of the magnitude of this issue. The right hon. Lady is right, and I thank her for her intervention.

As the disease becomes increasingly debilitating, there is a need for more trained specialists in it. I ask again the question asked by the right hon. Member for Leeds Central, and we look to the Minister for help: what can be done, and what is being done, to increase the numbers of trained nurses? The disease affects the whole of this great United Kingdom of Great Britain and Northern Ireland, so what discussions has the Minister had, or will she have, with the devolved Administrations to ensure that there is a universal strategy for moving forward that encompasses us all?

A nurse who is qualified in Huntington’s plays a key part in the patient’s life, as the link to mental health. Physically, the patient’s body is dying—that is what is happening. Mentally, the disease affects them with anxiety, depression and all those issues. They feel it as it overtakes them and as their bodies decay. The nurse is also the link to neurology, GPs, social services and occupational therapy. I come back to the comment about PIPs made by the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts). When our staff fill in PIPs forms, we look at how occupational therapy can add aids that help patients around the house. There is only so much that can be done for Huntington’s, and perhaps other diseases, but there is a key role for the occupational therapist in helping families to deal with it, whether that means a bed downstairs, an extension to the house or a walk-in shower. At certain stages of the game, of course, those things will not help, but perhaps early on they can.

In the area covered by the South Eastern Health and Social Care Trust, which includes my constituency, patients are referred to the Belfast Health and Social Care Trust specialist nurse, and the cost is covered by the Health and Social Care Board. Patients living in the western, northern and southern trust areas in Northern Ireland have no access to Huntington’s disease specialist nurses. Some sufferers have described the condition as a vacuum of silence—that is what it is. They feel almost isolated—on their own—and they are very much dealing with all the issues without help. When people are living in complete isolation, with no assistance, it is important that there is someone they can turn to.

Although I appreciate that health is devolved in Northern Ireland, the situation unfortunately remains the same in the rest of the UK, as the right hon. Member for Leeds Central said and as others will as well. There is no equality of care, and Huntington’s disease patients still feel left behind. Through this debate and through awareness raising, we must try to address that. If the number of people diagnosed with Huntington’s disease continues to rise, the Government must review its status as a rare disease. I said that earlier on, and I say it again. Perhaps we need to move it into a priority category as soon as we can.

I look to the Minister, as I will continue to do whenever she is responsible for the answers, and to her counterparts in the devolved Administrations to initiate funding for greater care for those in the early and latter stages of the disease. We referred to those 15 clinical trials earlier. The right hon. Member for Leeds Central referred to the clinical trials and how important it is to find a cure, help that research and bring new symptoms to light.

Familial carers desperately need their loved one to have professional care, so that they can seek some respite, without being sick with worry about them. They need respite care—we say that often, but Huntington’s disease is such an all-encompassing disease that it totally takes over the life of families. That respite care has to be there to give them a half-day or even a few hours off from the 24/7 focus they have. Some indication in the Minister’s response that there will be some help with respite care would be helpful.

Contact in Care Settings

Liz Saville Roberts Excerpts

Thursday 27th October 2022 Commons Chamber

[Dan Carden (Liverpool, Walton) (Lab)]

I beg to move,

That this House has considered the matter of guaranteeing the right to maintain contact in care settings.

After much delay due to circumstances out of our hands, I am grateful that we now have the opportunity in this Chamber to debate this incredibly important issue. I thank the Backbench Business Committee for its efforts in finding us time to speak about this in the Chamber today. I also want to extend my gratitude to the hon. Members for Chatham and Aylesford (Tracey Crouch) and for St Albans (Daisy Cooper) and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) for their steadfast and resolute support and advocacy on this matter throughout.

People across the United Kingdom are still having to face their time in hospitals, care homes and other care settings completely alone and detached from the people they hold dearest. They are some of the most vulnerable and frail people in our society; some of them will be nearing the end of their lives. The devastating impact of this isolation and of denying contact with loved ones affects those in receipt of care and also their loved ones. It is difficult to imagine, unless we have personal experience, the anguish, pain and stress of not knowing when we will next see our loved one—our husband, wife, mother or father—and repeatedly asking ourselves, “Are they okay? Are they comfortable? Do they even know that I care?”

That same anguish and pain is experienced by the individual receiving care, not understanding why family or loved ones are not able to visit. Shirley from my constituency said:

“My father forgot I was his daughter during the period I was unable to visit. When I was finally able to visit, my dad was unrecognisable. It broke my heart. He has never recovered.”

The support and care given by partners and by parents and children is not an optional extra: contact with loved ones is absolutely vital to dignified care. This point was also made by the 363 members of the public who in the last few days alone provided written evidence for this debate, and I want to thank them for their brave contributions and the Chamber engagement team for collecting them.

Throughout today’s debate we will hear further personal experiences from across the Chamber, but I hope the House will not mind if I take a moment to talk about my own family’s experience last year. My mother and brother contributed a few words, too, and I am grateful to have the opportunity in the Chamber to express them.

My father, Mike, died last year: he was diagnosed with lung cancer in February and died in December. Like many people undergoing cancer treatment, one evening he suddenly became unresponsive and we had to rush him to A&E. At the hospital, it was confirmed that he had sepsis, and he was therefore isolated in a side room on the A&E ward, which was overrun with patients on beds or trollies in the corridor. My dad was in an A&E side room for three days, during which time he did not receive any hot food, he was not showered or washed, nor assisted to change his clothes, and he was unable to get help to go to the toilet. Instead, he was given cardboard containers which were often left full on his bed table for days despite regular requests that they be taken away and replaced. Throughout this time, he had no means of contacting us, because there was no phone signal where he was and he could not access the wi-fi despite repeated attempts.

There were other occasions: once he had to be moved to a ward, when he was left with his emergency buzzer out of his reach; and one time he could not breathe and began to panic, and he phoned my mum, who was unable to get through to the ward by phone and therefore rushed to the hospital. After these experiences he told us that he had felt so lonely and neglected, and unable to alert anyone to his basic needs, and my dad was a man who never liked to make a fuss.

The hospital policy at the time was that visitors were only allowed for patients in end of life care. The NHS website defines that as follows:

“End of life care is support for people who are in the last months or years of their life.

End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.

They should also support your family, carers or other people who are important to you.”

However, at the time, the hospital defined end of life care differently and restricted visiting rights to those patients who were “actively dying”. In other words, they were displaying the physical symptoms of dying.

My mum said:

“This meant that instead of being able to focus on caring and supporting my husband through his final weeks, we had to battle with the hospital to see him. The trauma of my husband’s death—and in particular the neglect he experienced in his final weeks of life—remain with me. It is almost exactly one year since Mike was admitted to hospital, where he spent the last month of his life, and I am still overwhelmed each time I attempt to talk about what he went through.”

I turn to the words of one dementia sufferer, who said:

“I’d forget that I had an allergy, but my daughter was there to correct me. If alone, I would simply have said I didn’t have an allergy—that could be so dangerous.”

The lack of input from the family and friends of those receiving care—the people who know them best—leads to much worse outcomes.

In March, we invited affected constituents to an event where they could share their experiences with parliamentarians on the estate. The testimonies that we heard were harrowing, and the collective trauma was palpable. To give just one of the contributions from that day:

“Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home 16 months before.”

That powerful event left those hon. Members present united in the view that a legal right was needed to secure the right of care users to nominate an individual to provide support or care in all circumstances. Many of us at the event were disappointed by the response of the Government and the Minister for Care.

Since the event, 60 Members sent a letter to the right hon. Member for Bromsgrove (Sajid Javid), who at that point was Secretary of State for Health and Social Care, pushing for codification—a legal right to be put into law. We were again left disheartened by the Minister’s response. While we were told that the Government were committed to ensuring that care home residents had access to the support and companionship that loved ones bring, there was no answer to our request for a meeting or consideration of our proposals. Understandably, the campaign groups felt ignored once more. I hope that the Minister will not leave those affected feeling the same way.

The problem is not exclusive to the coronavirus pandemic. There are still rigid restrictions on visiting as well as shocking instances of denying contact. Another of my constituents reported:

“My family and I have never been allowed into the care home that he now resides in. Restrictions have caused unnecessary stress and anxiety to my family and I.”

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

The hon. Member is making an excellent speech. Does he agree that now is exactly the time that we should be considering this matter, because, as we go into the winter, many care settings will be considering the option of imposing restrictions, and guidance alone has proven insufficient? That is among the lessons that we should have learned over the last two years. The Government should now be acting.

[Dan Carden]

I am grateful to the right hon. Member for that intervention. The Government have previously pointed to guidance as a defence against bad practice, and we have enough evidence to show that that is not good enough. Indeed, while there are excellent examples of good practice across the sector, significant levels of uncertainty and variability throughout the system seriously undermine the rights of individuals. The guidance leads to a postcode lottery as separate settings interpret guidance differently.

That difference is compounded by the response of the Care Quality Commission, which is an organisation that many have had difficult and negative interactions with. The Government encourage those affected to report care providers who do not meet the guidance to the CQC, but by then it may be too late. The poor response is not because the CQC ignores complainants, although there was evidence of that as well, but that it simply does not have the proper powers or data to support people who have their access rights compromised. In the CQC’s own words:

“We do not have the power to require care homes to report live data on levels of visiting, neither do we have the power to take action against those care homes that are not reporting changes to their visiting status to us.”

The CQC, which regulates all health and care services in England, bases its enforcement action on the capacity tracker. However, providers are not obligated to use the tool—they are merely encouraged. That has led to very little, if any, clarity on the true extent of the problem.

By comparison, in Scotland, the National Care Service (Scotland) Bill, places a duty on Ministers to require providers to comply with any direction made regarding visiting. What assessment has the Department made of the Bill and would it be minded to introduce similar provision in England? The evidence suggests that the only way to guarantee contact in care settings is a legal right to an essential care supporter. An essential care supporter would be able to visit or accompany a person in any health and care setting to help communicate their wishes and needs, and to ensure they receive the correct care. If the Government are serious about their support for these calls, if they are serious about acting in the interests of families and loved ones, if they are serious about balancing clinical restrictions with the impact of restrictions on residents’ health and human rights, then I ask the Minister to immediately consider how to put that into law.

I cannot think of any other issue that commands such unanimous cross-party support. Indeed, as my right hon. Friend the Member for Leeds Central (Hilary Benn), who I know supports these calls wholeheartedly, said at our meeting in Parliament:

“How can anyone be opposed to this?”

There are also 35 organisations in this area who support these calls, including Mind, Mencap, Disability Rights UK and Dementia UK. The new Secretary of State for Health and Social Care, the right hon. Member for North East Cambridgeshire (Steve Barclay), has previously signalled support for this right. We are ready and willing to work with the Government to make this legal right a reality as swiftly as possible. The Joint Committee on Human Rights has also been unequivocal in its call for legislation in this area. In its report from July this year, “Protecting human rights in care settings” it stated:

“The Government must introduce legislation to secure to care users the right to nominate one or more individuals to visit and to provide support or care in all circumstances, subject to the same infection prevention and control rules as care staff.”

We have not yet had a response from the Government to that report, so may I ask the Government Minister to take that up? We have opportunities in the draft Mental Health Reform Bill and the Bill of Rights to codify this right. The Government could also introduce secondary legislation, which I know campaigners are in favour of. Will the Minister meet me, others and the affected families as soon as possible to discuss making this right as strong and effective as possible? The Government have previously said that legislative options are under active consideration, so please can the Government give much more specific detail on what that actually means?

I want to finish by paying tribute to the tireless campaigning of organisations in this area, in particular the Rights for Residents campaign group, the Relatives and Residents Association and John’s Campaign. The work of Jenny Morrison, Diane Mayhew, Helen Wildbore, Julia Jones, Nicci Gerrard and Kate Meacock has been absolutely inspirational, and they are all in the Public Gallery today watching this debate. Their dedication to this campaign has been phenomenal. I pay tribute to them. In the face of immense loss and personal grief, they have shown incredible selflessness and service to guarantee that no other family member will have to endure the pain of being denied contact again.

Families do not deserve any further delay; they have suffered enough. We must learn from this trauma and bring in legislation. I hope that when the Minister rises to give the Government’s response, she will agree and set out the steps that we can take to get this right.

--- Later in debate ---

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Diolch yn fawr iawn, Lefarydd.

My mother Nancy had a stroke sometime between Christmas eve and Christmas day at the close of 2020. There was no warning, no time to prepare for this catastrophic event. Overnight she lost her autonomy, her independence and her agency in her own life. She went into the local district hospital and was transferred from there at the beginning of January 2021 to a community hospital specialising in stroke rehabilitation. She remained there until the end of that February. She came back to live with us for a couple of months, with twice daily home carers, while I, her only child, was still able to vote here and speak in debates without having to be physically present in the House of Commons. She had to move into residential care because the period when I could balance caring and parliamentary duties came to an end.

Last November she had a fall and knocked her head. The anti-stroke medication resulted in bleeding on her brain. She was discharged from hospital back to the residential home at very short notice. Just before Christmas she fell again and broke her hip. She died in hospital four weeks later. These are the bald facts of the event. It was my mother’s misfortune to be old and in need of clinical services during the first covid winter. It was the misfortune of all of us as a family that my mother fell ill at a time when covid infection control demanded the absolute isolation of stroke patients. Many of the key workers with whom we interacted over those 13 months were extraordinary.

During the last month of my mother’s life, dementia specialist nurse Delyth Fon Thomas put me in contact with John’s Campaign. She explained to me that, in the last month of my mother’s life, family contact was a right rather than an optional favour. She was the first person in authority to mention that, and she put me in contact with Julia of John’s Campaign, who is, I am glad to say, with other campaigners here in the Public Gallery.

Look up the long list of hospitals and other organisations that have signed up to John’s Campaign. They recognise that a key family member is more than a visitor—they are a carer as much as anyone on the payroll. But, I say to Members, try to get that information volunteered to you, try to find out what your rights are, because they are not given to you on a plate. People such as Delyth confounded the cliché of monolithic public sector organisations, which may well prioritise institutional interests and risk aversion to the detriment of those services that we trust them with providing. I think that, as private individuals, many people will have had that experience.

None the less, despite Delyth’s help, I only touched my mother’s hand once during the critical six weeks after her first stroke. Yes, we could arrange to speak to her through a glass window as she sat in a hospital stairwell and we stood outside in the car park, peering in. She could not hear us—incidentally, her hearing aid had been kept in a cabinet all the while and the batteries had run out. Yes, we could phone and arrange to speak over an iPad, but she could not hear us; she could not understand us. There were no hugs.

Health authority infection policy vetoed family bonds of love as a health hazard to be minimised. Of course, at the onset of covid, we had to adapt and learn quickly about how to cope with an unfamiliar, life-threatening and highly infectious virus. We put in place measures such as lockdowns and visiting restrictions at hospitals and care homes, because that was the best that we could do; that is all we knew back in 2020. We had to learn as we went along, but have we truly learned the most important lesson of all? Treating the elderly and people with dementia as units of flesh and bone by meeting the barest minimum of their physical needs is wrong. We are social animals: take away our social support and we fail to thrive. Denying family contact causes immediate welfare harm to patients and longer-term harm to family members.

That is the context in which we must apply the abstract terminology of legislation: the Equality Act 2010 recognises the basic principle that the needs of disabled people should be assessed and reasonable adjustments made to meet those needs. People with dementia and cognitive impairments are disabled. Then there is the matter of human rights, which have been touched on. Article 2 of the European convention on human rights places an obligation on the state to secure the right to life. Article 8 protects the right to private and family life, but how these are balanced in care settings is critical, and how we shift that balance as we move along is also critical. It is also surprising that the Human Rights Act 1998 applies only to publicly funded residents in care homes.

This evidently unjust inconsistency is why the Government must step in. Why should the owners of private care homes, especially in England where local authority care is far less available than in Wales, be able to make such immense decisions, and possibly prioritise convenience over residents’ and families’ rights? Indeed, if we start from the point of view of people in need of care, the care setting itself should not depend on whether it is in the public or the private sector. If the individual has a right, that right goes with them throughout their lives—whether they be in hospital, at home or in residential or nursing care. A right is not a right if its only guard dog is guidance.

[Sir Geoffrey Clifton-Brown (The Cotswolds) (Con)]

On a point of order, Mr Deputy Speaker. I made a speech in the previous debate on the national food strategy and food security and I inadvertently forgot to declare my interest in the Register of Members’ Financial Interests as a farmer and a Fellow of the Royal Institution of Chartered Surveyors, for which I wish to apologise to this House and to put the record straight.