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

Danny Kruger Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

On a point of order, Mr Dowd. My understanding is that we are planning to sit a bit later today, which is fine by me. I wanted clarity from you that the Committee has no hard deadline—that although the intention is that Report stage will take place on 25 April, if the Committee wished to go further, it could. I was a little concerned by some of the remarks made in this morning’s sitting about people being conscious of time; there is a sense of being asked to speed up as we go. Am I right in saying that the Committee can take as long as it needs to, and that in fact it should, to debate this very important matter?

[The Chair]

The short answer is yes. I think Members will inevitably deal with this in as sensitive and conciliatory fashion as possible, notwithstanding that point.

Clause 4

Initial discussions with registered medical practitioners

Amendment proposed (this day): 342, in clause 4, page 2, line 23, leave out

“may (but is not required to)”

and insert “must”.—(Danny Kruger.)

This amendment would strengthen the requirement for a registered medical practitioner to conduct a preliminary discussion.

Question again proposed, That the amendment be made.

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[Kim Leadbeater (Spen Valley) (Lab)]

I will try to keep my comments as brief as possible because we have had another very thorough discussion. First, my amendment 424 is, as the Minister said, a simple drafting change in clause 40 that confirms that “preliminary discussion” means a discussion as per clause 4(3).

Amendment 275 from my hon. Friend the Member for Sunderland Central would, in many circumstances, broaden the scope of the conversation that the doctor would have with the patient, and I am happy to support it.

I am also happy to support the very sensible amendment 108 from my hon. Friend the Member for East Thanet (Ms Billington). It is perfectly acceptable to ask the doctor to offer to refer the patient to a specialist, as they would probably do in most cases anyway, but the amendment is for clarity.

I refer colleagues to the comprehensive comments on my amendment 183 earlier in proceedings, and also to the support of the British Medical Association. Following Second Reading, I listened carefully to Members’ concerns about the possibility of doctors only discussing assisted dying with patients. Even though the Bill states that that cannot be the case, for the avoidance of any doubt the amendment emphasises that the initial discussion mentioned in clause 4(3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4). Accordingly, such a preliminary discussion may not be conducted in isolation from an explanation of and discussion about the matters mentioned in paragraphs (a) to (c) of that subsection—that is, doctors cannot discuss the option of assisted dying in isolation but only in conjunction with discussion about all other available and appropriate treatment.

Indeed, Andrew Green of the BMA told us that

“some patients find it very difficult to bring up sensitive subjects with their doctors, even when those are the most important thing on their mind.”

He asked us to

“please do not pass legislation that makes it harder for doctors to understand their patients.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 42, Q24.]

That concludes my remarks.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 270, in clause 4, page 2, line 25, at end insert—

“(3A) Before conducting a preliminary discussion under subsection (2) the registered medical practitioner must ensure that the person has no remediable suicide risk factors which pose a significant risk to their life.”—(Danny Kruger.)

This amendment requires that the doctor ensures that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying.

Question put, That the amendment be made.

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This amendment emphasises that the initial discussion mentioned in subsection (3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4).

[Danny Kruger]

I beg to move amendment 71, in clause 4, page 2, line 31, at end insert—

“(4A) The practitioner must, following the preliminary discussion under subsection (3), refer that person to the Assisted Dying Agency if the person asks them to do so.”

This amendment is consequential on NC4 and would establish a pathway by which a person is referred to the Assisted Dying Agency.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 72, in clause 5, page 3, line 16, leave out paragraph (b) and insert—

“(b) has been assigned to the person by the Assisted Dying Agency,”

This amendment is consequential on NC4 and provides that the coordinating doctor must have been assigned to the person by the Assisted Dying Agency.

Amendment 73, in clause 7, page 4, line 21, leave out paragraphs (b) and (c) and insert—

“(b) provide the person who was assessed and the Assisted Dying Agency with a copy of the statement.

(3A) Upon receipt of the statement specified in subsection (3)(a), the Assisted Dying Agency must assign to the person, as soon as practicable, another registered medical practitioner who meets the requirements of section 8(6) for the second assessment (‘the independent doctor’).”

This amendment is consequential on NC4 and would require the coordinating doctor to send a copy of their statement to the Assisted Dying Agency. That Agency must then to assign an “independent doctor” to the person.

Amendment 75, in clause 8, page 5, line 9, leave out “coordinating doctor” and insert “Assisted Dying Agency”.

This amendment is consequential on NC4.

Amendment 74, in clause 8, page 5, line 16, at end insert—

“(ba) has been assigned to the person by the Assisted Dying Agency,”.

This amendment is consequential on NC4 and provides that the independent doctor must have been assigned to the person by the Assisted Dying Agency.

Amendment 76, in clause 9, page 6, line 14, leave out paragraph (e).

This amendment is consequential on NC4.

Amendment 77, in clause 11, page 7, line 18, after “appointment,” insert

“by the Assisted Dying Agency”.

This amendment is consequential on NC4.

Amendment 78, in clause 14, page 10, line 7, leave out from “person)” to end of line 12 and insert “the Assisted Dying Agency”.

This amendment is consequential on NC4.

Amendment 79, in clause 16, page 11, line 18, leave out subsections (2) and (3) and insert—

“(1A) The Assisted Dying Agency must, as soon as practicably possible, record the making of the statement or declaration.”

This amendment is consequential on NC4.

Amendment 80, in clause 17, page 11, line 36, leave out subsections (2) and (3) and insert—

“(1A) The Assisted Dying Agency must record the cancellation.”

This amendment is consequential on NC4.

New clause 4—Assisted Dying Agency—

“(1) There shall be a body known as the Assisted Dying Agency (‘The Agency’).

(2) The purpose of the body is to coordinate requests from people to be considered for assisted dying, including assigning, at the appropriate junctures, a coordinating doctor and independent doctor for a person seeking assistance to end their own life.

(3) Where a person has previously been referred to the Agency, no future referral relating to that person can be proceeded with by the Agency unless it considers there has been a material change in the person’s circumstances.

(4) The Secretary of State must make regulations setting out—

(a) the staffing and remuneration of such staff,

(b) the procedures of the Agency, and

(c) the means by which the Agency can pay coordinating doctors and independent doctors for services rendered under this Act.

(5) The Agency’s expenditure is to be paid out of money provided for by Parliament.

(6) The Agency must, for each financial year, prepare accounts in accordance with directions given to it by the Treasury.

(7) The Agency’s chief executive is its accounting officer.

(8) As soon as reasonably practicable after the end of each financial year, the Agency must prepare a report about the performance of its functions during that year and lay that report before both Houses of Parliament.

(9) Regulations under subsection (4) are subject to the affirmative procedure.”

This new clause would create a new body that was principally responsible for coordinating and recording statements and declarations in relation to a person’s request for assistance to end their own life.

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[Danny Kruger]

Although these provisions may seem irrelevant to the Bill—I do not think any of us wishes to see the creation of an assisted dying agency—I am nevertheless grateful to my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) for tabling them. He is playing his usual role of keeping us honest.

It is extraordinary that nowhere does the Bill lay out exactly how the assisted dying service would be delivered—whether it would be an NHS service, a private service or some mix of the two. I am therefore grateful to my hon. Friend for being clear in his suggestion that it should be a non-NHS service and that, if we are to pass this law, we should establish a bespoke agency for the explicit purpose of delivering that service. It is a rather macabre but logical way of delivering on the proposal in the Bill.

The fact is that many doctors, faced with the prospect of being asked to participate in assisted dying, have expressed their preference for it to be delivered outside the NHS. In its written evidence, the British Medical Association, which has been cited a number of times today, says:

“There is nothing in the Bill about how an assisted dying service might be delivered, although the possibility of a separate service is mentioned in the explanatory notes.”

The BMA’s view is that assisted dying

“should not be part of the standard role of doctors or integrated into existing care pathways”.

I stress that point, because it has often been suggested in the course of debate that the way assisted dying will work will be as part of a holistic range of options—pretty indistinguishable from palliative care or other treatment options put before patients. The BMA is clear that assisted dying

“is not something that a doctor can just add to their usual role.”

The Royal College of General Practitioners has also pointed out in evidence that the shape of the service is not set out in the Bill.

[Kit Malthouse (North West Hampshire) (Con)]

On a point of order, Mr Dowd. In his opening sentence, my hon. Friend said that none of us wanted to see the creation of an assisted dying agency. My interpretation of our speaking to a particular amendment is that we have to address what it intends to do in the Bill. My hon. Friend said that he does not want what the amendment intends and that he is speaking more generally about the delivery of the service. Could we have your guidance as to whether that is in order? One of our problems is that we are having very expansive debates, and previous Chairs have sought to keep everyone in order. I am anxious that my hon. Friend does not exhaust himself by straying from the central point in the amendment.

[The Chair]

The fact of the matter is that the hon. Member does not have to agree with the amendment, so he is perfectly entitled to speak in that regard.

[Danny Kruger]

I am grateful to you, Mr Dowd, and to my right hon. Friend for his concern for my welfare, which is much appreciated. However, he will be relieved to know that I have plenty of energy and can keep going.

To speak seriously, it is very germane to the Bill that the amendments are considered. As I was explaining, GPs and other medical practitioners have been concerned about the absence from the Bill of clauses to specify the delivery of the service, so I am grateful that we have this opportunity to discuss that and to hear from the Minister and the sponsor how they imagine the Bill would operate and whether it would, indeed, be appropriate to establish some kind of agency along the lines proposed. The reason I object to an assisted dying agency is that I object to assisted dying, but I see the logic of the proposal if we are to proceed with the principle of the Bill.

It is extraordinary that this crucial question is not set out. In his evidence to us, Chris Whitty said rather airily that it was for Parliament to decide how the service should be delivered. I would stress that most medics involved, particularly in palliative care and care for people at the end of life, are very hostile personally to the suggestion that they should participate in assisted dying. The BMA’s 2020 survey of its members found that 76% of palliative medicine doctors would be unwilling to participate if assisted dying were legalised. The Royal College of Physicians 2019 members’ poll found that 84% were opposed.

[Kit Malthouse]

This is not in order; it has nothing to do with the amendment.

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[Kit Malthouse]

I am grateful, Mr Dowd.

[Danny Kruger]

I, too, am grateful, Mr Dowd. I stress that I am discussing the suggestion in the amendment that assisted dying be taken out of the NHS and not be part of the normal pathways doctors are invited to participate in. It strikes me as relevant that most doctors, were the law to be passed, would wish for something along the lines of the amendment to be included.

We do not know exactly how that would work. We know that it could potentially be private, according to the scheme set out in the amendment, or it could be within the NHS. We know from the references in clause 40 that private provision is envisaged, because of the talk of reasonable remuneration for the provision of services. So it would be outside the normal service expectation of medical professionals employed by the NHS; indeed, we know that it could be a lucrative market.

[Sojan Joseph]

Does the hon. Member think that, if we bring in an agency from outside the NHS—from the private sector—this will become like a business?

[Danny Kruger]

The hon. Gentleman is absolutely right. The opportunity is there in the Bill for private businesses to be established to deliver assisted dying services. Indeed, it would be quite a lucrative money-making enterprise. Estimates have been given of between 5,000 and 17,000 assisted deaths per year, depending on how they are arrived at. If the charges employed by Dignitas—which is in a sense the model being proposed here—are anything to go by, it could be in the region of £5,000 to £10,000 per patient. Even a small proportion of that would be significant—a multimillion-pound business would be possible under the Bill. Advertising would also probably be possible; we saw TfL suggest that the Dignity in Dying adverts in the tube before Second Reading were compliant. There is no prohibition in the Bill on advertising or on people making money from it.

However, the Bill also specifies that this would be a state-protected service, so if it were to be a private enterprise, it would have all sorts of state protections that would not normally apply to private providers of anything. Under clause 25, the providers would be exempt from any civil liability for providing assistance under the Bill. Under clause 29, a death would be exempt from investigation under the Coroners and Justice Act 2009. Clause 30 says that a failure to comply with any code of practice

“does not of itself render a person liable to…criminal or civil proceedings”.

The only monitoring that would be done would be undertaken by the voluntary assisted dying commissioner, who is not an independent figure, but the person responsible for setting up the panels that approve the deaths.

[The Chair]

Order. We need to get back to the assisted dying agency. Can the hon. Member keep to that, please?

[Danny Kruger]

I shall—I am winding up now, Mr Dowd. These amendments go to the heart of this great absence—this blank space—in the middle of the Bill, which is how on earth it will be delivered. Who would deliver it, and under what regulation? What would be their terms of engagement? All of that represents quite a scandalous gap in the Bill, and my concern is with that enormous gap.

I want to conclude with a reflection on that lack of clarity. Elizabeth Gardiner, who I understand was the very experienced parliamentary drafter who contributed her time to draft the Bill, talked on the Hansard Society podcast of the opportunity that drafting has to change the law. She noted that if the law

“is a restriction that would curtail the ability of this to be delivered through the National Health Service, the Bill could change that.”

So it has been suggested that the Bill would require changes to the National Health Service Act 1946 to remove what the Hansard Society calls the “duty to protect”.

[The Chair]

Order. The hon. Gentleman heard what I said earlier, and I do not want to reaffirm it, but can we get back to the substance of the assisted dying agency provision, please?

[Danny Kruger]

I have one last point to make, Mr Dowd, which I hope you will regard as in order because, as I said, it goes to the heart of things. At the moment, the Bill does not specify how these things should be done, and Elizabeth Gardiner, the drafter behind it, said on the radio:

“we didn’t have time to go into all the detail of how those regimes work and to make the provision on the face of the Bill. And so there are regulation making powers there, which enable that provision to be set out”—

I believe that that is in clause 32. Enormous Henry VIII powers are being established. I deeply regret the gap in the Bill, and I am grateful to my hon. Friend the Member for Runnymede and Weybridge, who tabled these proposals, for enabling us to have this debate.

[The Chair]

Order. I remind the hon. Member to keep to the issue that we are discussing, because if he or any other Member does not, and goes beyond the scope of what they really should be sticking to, I will take a much less lateral approach in future. I say that gently and with the best intention.

[Kim Leadbeater]

I have nothing to add, other than to agree with the hon. Member for East Wiltshire; I do not think any of us on the Committee are keen on the implementation of the assisted dying agency.

[Danny Kruger]

Will the hon. Member give way?

[The Chair]

Too late.

[Danny Kruger]

I really regret that we have had such a small debate on the enormous question of how on earth assisted dying would actually be delivered. We are leaving it to Ministers, subsequent to the passage of the Bill, to design this service. The clear possibility is that a private enterprise could run the service. It might be an NHS service. The fact that that is unclear in the Bill is shameful, but I am grateful we have had the opportunity to debate the matter, sort of, and I am not going to press the amendment to a vote. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn. 

Amendment proposed: 276, in clause 4, page 2, line 31, at end insert—

“(4A) A medical practitioner must not conduct a preliminary discussion with a person under subsection (3) until a period of 28 days has elapsed, beginning with the day the person had received a diagnosis of the terminal illness.” —(Naz Shah.)

This amendment would mean a doctor could not conduct a preliminary assessment until 28 days from the day the person received a diagnosis of the terminal illness.

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[The Chair]

Before I call Danny Kruger to move amendment 412, I remind Members to keep within scope and to ensure that any points raised are relevant and not repetitive, or I will intervene.

[Danny Kruger]

I beg to move amendment 412, in clause 4, page 2, line 32, leave out subsection (5).

[The Chair]

With this it will be convenient to discuss the following:

Amendment 341, in clause 4, page 2, line 33, leave out from “subsection (3)” to the end of line 36 and insert

“is not required to refer the person to another medical practitioner but must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”

This amendment would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion with a person must provide information to the person about where they can have that discussion, but that this need not take the form of a referral.

Amendment 338, in clause 4, page 2, line 34, leave out from “so” to end of line 36 and insert

“direct them to another registered medical practitioner or the independent information and referral service established under section [Independent information and referral service]”.

This amendment, which is linked to NC13, would mean that a registered medical practitioner who was unwilling to have preliminary discussions would direct the person to another registered medical practitioner or an independent information and referral service.

Amendment 287, in clause 4, page 2, line 34, leave out from “practitioner” to end of line 36, and insert

“who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”

This amendment means that the medical practitioner who is unwilling to have an initial discussion with a person must, both refer them to another registered medical practitioner and set out the palliative care options including referring them to a specialist.

New clause 13—Independent information and referral service—

“(1) The Secretary of State must, by regulations, make provision to establish an independent information and referral service to—

(a) provide information to persons who are, or may be, eligible for assisted dying in accordance with this Act, and

(b) where requested, facilitate the person’s access to assisted dying in accordance with this Act.

(2) Regulations under subsection (1) are subject to the affirmative procedure.”

This new clause would require the Secretary of State to make provision for an independent information and referral service.

[Danny Kruger]

I rise to speak to this important group of amendments, which are all relevant to the duty to refer, whereby a doctor who does not want to advise a patient on assisted dying is obliged to send them to somebody who does. In different ways, we each seek to provide more protections for those medical professionals.

There are two main reasons why doctors may not want the obligation to refer that is in the Bill. The first is the central point that this is not a healthcare treatment, as is traditionally understood. Assisted dying does not address the condition or treat the illness; it treats only the symptoms, in the sense that it obliterates the existence of the patient. Like the advert for bleach says, it “kills all known germs”—it kills every experience that the patient has or could have. It is not part of the range of treatments that a doctor should have to offer, as clause 4(1) makes clear.

That point similarly relates to the question of referring to somebody who can offer that discussion. I suggest that the act of referring is an act of endorsement, just as offering the intervention itself is an act of endorsement. Dr Green from the BMA made it clear during oral evidence that the BMA does not like the word “refer”, as it implies assent to the option that is being offered. Indeed, the hon. Member for Spen Valley, in conversation with Dr Green during evidence, accepted that the word “refer” was “not…quite right”, as she put it, because it has the particular implication and expectation of a form of endorsement.

We have heard the same opinion from multiple witnesses in written and oral evidence to the Committee, particularly from Muslim medical professionals and their trade body. Those representing pharmacists also expressed significant concern that they might find themselves included in the definition of medical practitioner. The Association of Anaesthetists and the Royal College of Nursing were worried as well. A range of professional bodies and representative organisations share my concern that imposing a duty to refer—an obligation to assist somebody to have an assisted death by finding them a doctor who will conduct the preliminary discussion—is itself a breach of their rights of conscience.

The second reason follows from the first. Doctors may reasonably conclude that being in a position to help with assisted dying puts them in a totally different relationship with their patients. That is why the BMA is so unhappy and has asked for the requirement to be removed. It has an alternative, which some of these amendments also propose. It said:

“We urge the committee to remove the referral requirement and, instead, make it clear that the doctor’s duty is to direct patients to where they can obtain information”.

That is what amendment 341, in the name of my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson), would do. The BMA suggests that

“this should be an official body set up to provide individual information and advice to patients, to which patients could be referred or directed to, or could self-refer.”

My preference would be not to have any obligation on doctors to make any kind of referral, but I respect the aspiration of the amendment, which is to ensure that there is an independent body to give advice that patients can seek out themselves or that they can be advised of, so there is no expectation of a referral to a doctor who can facilitate the assisted death.

The Royal College of General Practitioners is also unhappy about the provision. It suggests that instead of expecting doctors

“to refer directly to a medical practitioner who is ‘willing and able to conduct that discussion’”—

as per the Bill—

“the doctor’s duty would be to direct patients to an official service where they can obtain objective and accurate information”.

I think we should pay heed to the advice of the professionals.

As ever, I would like to refer to the experience of foreign jurisdictions, because we are constantly told that this Bill is the safest in the world. None of the legislation in Australia or New Zealand, or the legislation currently going through in the Isle of Man, puts an obligation to refer on to doctors. Victoria and South Australia’s legislation says that a doctor has the right to refuse to participate in the request for assistance process and to give information about voluntary assisted dying, so there is no duty to refer—not even a duty to provide information.

I conclude with an observation that was submitted to us by Dr David Randall, a consultant nephrologist. It was very telling that he said in written evidence:

“I would not be willing to act in accordance with Section 4(5) of the Bill. I am a doctor in good standing with the GMC, and who has always striven to provide the highest standards of care to patients. Passage of this Bill would place my practice in direct opposition to the criminal law.”

He talks about “moral injury”, which is a very important principle. We have an obligation to protect the conscience and human rights of medical professionals.

We are still unclear whether this process will take place within the NHS or outside it. Nevertheless, the obligation to refer in the Bill would be a direct breach of doctors’ rights and would impose a moral injury on them. My preference is to remove clause 4(5) altogether, as that would be consistent with the Abortion Act 1967 and similar legislation on assisted dying in other countries. If we are not prepared to do that, we should at least restrict the obligation and provide more protections, as per the amendments in the names of other hon. Members.

[Rebecca Paul]

I rise to speak in support of amendment 341 in the name of my hon. Friend the Member for Sleaford and North Hykeham. It would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion must provide information to the patient about where they can have that discussion, but that need not take the form of a referral.

One of the messages that we heard loud and clear in the evidence sessions was that medical practitioners do not wish to be put under an obligation to refer a patient to another registered medical practitioner by the Bill. “Referral” has a very specific meaning in medicine, and it is that word and the corresponding action required of it that many doctors have an issue with. A referral puts a patient on a pathway, whereas the provision of information merely indicates where such a pathway can be found. During oral evidence, Dr Green said:

“The word ‘referral’, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

We are well aware that assisted dying is a complex issue and a matter of conscience for many. It is therefore important that we respect the personal views of medical practitioners. One of the points that I have made several times in these proceedings is that assisted dying affects not just the patient but other people participating and supporting. Some medical practitioners will be comfortable with it, but many others will not. It is therefore vital that we recognise their rights and needs, not just the patients’, when formulating this law. If for whatever reason a doctor does not want to refer a patient, they should not have to. Their legal responsibility should be limited to directing the patient to where they can find the relevant information that they need. Doctors should have no further obligation.

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[Kim Leadbeater]

I rise to speak to amendments 341, 338 and 412 together, and I welcome the debate on these important amendments. Choice is one of the key tenets of the Bill, primarily—but not exclusively—for terminally ill adults with a limited time to live. Choice is also very important for medical practitioners, and I am very respectful of, and acknowledge the importance of, conscientious objection for doctors. When it comes to assisted dying, I believe that they should also have choice. Indeed, the Bill is written so that they can choose not to participate in the process for any reason. That is the BMA’s view, and I agree with it.

The BMA has a position of neutrality on assisted dying, and there are a range of views within medical professions, as there are within all groups of people. That is why I have adopted its position of an opt-in model for the purposes of the Bill. Nevertheless, the process must remain patient focused at all times, and that means enabling them to have a discussion on such an important matter. It would not be right to rely on online advice or even the best-designed written materials. As we have already established, doctors are used to having sensitive and compassionate discussions with people who are terminally ill, and there can be no substitute for that. While a doctor may not wish to participate themselves, and I fully respect that, they still have a responsibility towards their patients, and that should include ensuring that they can speak to a properly qualified medical practitioner at such a difficult time.

I understand that the BMA and others would not be comfortable with the word “refer”, which I understand to have a special meaning within medical practice. The GMC guidelines use different language. They talk about where a doctor has a conscientious objection, in which case they are advised that they must make sure that arrangements are made for another suitably qualified colleague to take over their role. The BMA’s guidance says that patients must be able to see another doctor, as appropriate, and that it need not always be a formal procedure. It is not, however, sufficient to simply tell the patient to seek a view elsewhere—I agree completely.

The BMA supports amendment 341, which says that a doctor

“must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”

I am therefore happy to support the amendment today and, if it were to need further adjustment, I am very happy to consider alternatives based on existing best practice. I would be very happy to meet with the hon. Member for Sleaford and North Hykeham, who is herself a doctor, to discuss her thoughts and draw on her considerable medical experience.

[Danny Kruger]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 341, in clause 4, page 2, line 33, leave out from “subsection (3)” to the end of line 36 and insert

“is not required to refer the person to another medical practitioner but must ensure that the person is directed to where they can obtain information and have the preliminary discussion.”—(Rebecca Paul.)

This amendment would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion with a person must provide information to the person about where they can have that discussion, but that this need not take the form of a referral.

[Juliet Campbell]

I beg to move amendment 125, in clause 4, page 2, line 35, leave out from start of line to end of line 36 and insert

“who is on the Register of Assisted Dying Medical Practitioners.”

This amendment provides that only a medical practitioner who is on the Register of Assisted Dying Medical Practitioners as provided for in NC7 would have a person referred to them.

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[The Chair]

At this point, I will not necessarily call Members, including the Minister, unless they particularly want to speak. If Members do wish to speak, will they please bob?

[Danny Kruger]

I think that we are just concluding one of the most important debates that the Committee will have: the debate on clause 4. I welcome the concession from the hon. Member for Spen Valley, particularly her commitment to modify the obligation to refer. That is welcome and will make the Bill a little safer.

In our debates on the clause, there has been clear confusion, as my hon. Friend the Member for Reigate has just mentioned, about the extent to which assisted dying is a healthcare treatment. That speaks to the question of whether there is an obligation on doctors to offer this treatment—as there should be, if it is a treatment that is one of a range of options for which the patient is eligible—or whether it is something that they are not obliged to offer. That confusion, which was present in the Committee’s exchanges, remains. I want to record in hon. Members’ memory the fact that that question was unresolved. In my view, that is extremely unsatisfactory.

Despite some welcome concessions, the Committee has just decided to reject a series of amendments that would have protected both doctors and patients. Most concerningly, we rejected an amendment to give children the right to be protected from the suggestion of an assisted death before they are even eligible for it.

I will conclude by referring to evidence, which I do not believe has been referred to so far in the debate, on the question of how assisted dying is received as a suggestion or offer, particularly by marginalised groups. I was very concerned by the oral evidence that we took from Professor Ahmedzai, who supports assisted dying. In written evidence, he has said explicitly that he especially wants the option to raise assisted dying with

“patients who are poorly educated, ill-informed or seem to be unaware of the option”.

He has explicitly required and requested the opportunity to put it to these disadvantaged, marginalised patients: “poorly-educated, ill-informed” people. Compassion in Dying, the sister organisation to Dignity in Dying, which supports the Bill, makes the same point: that marginalised people will need to be “directly prompted” with the offer.

I am afraid to say that, in rejecting the amendments, the Committee has endorsed the approach that people who are particularly marginalised and disadvantaged need to have this suggestion explicitly made to them. I am astonished that the Committee proposes to proceed on that basis, which completely misunderstands the dynamic of vulnerable people in the face of authority. I am very distressed to find that the Committee thinks that acceptable, and I am very sorry that apparently we are proceeding with the clause. I do not propose to put it to the vote, because the Committee’s will to proceed is fairly clear, but I hope that everybody is fully aware of what they are doing.

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[Danny Kruger]

I am grateful for the points made by my right hon. Friend the Member for North West Hampshire. I will speak briefly to amendments 403 and 404, which would create an expectation that a patient at least addresses the question of whether their family is aware of the decision they are making. In an amendment that has not been selected for debate today, I proposed simply to make that expectation clear.

My personal view is that I do not accept that this is healthcare, and therefore that a doctor would have an obligation to ensure that the next of kin of somebody to whom they are proposing to give lethal drugs is informed. However, in the spirit of the Bill, which is all about autonomy, and in an attempt to be constructive and put forward amendments that might be accepted, I accept that this is a decision for the individual in the same way as a healthcare decision, and that there is therefore no obligation under rules of patient confidentiality and the expectations around healthcare that the family should be informed.

Nevertheless, creating a moment at which the first doctor the patient speaks to gently encourages them to consider telling their family before taking the enormous step of signing the first declaration is appropriate. The amendment would give the patient three options: first, to confirm that they have informed their family of their wish to be provided with assistance to end their life.

[The Chair]

Order. I understand that the hon. Gentleman wants to touch on that amendment, but it has not been chosen today. He is talking about the declaration that the person has informed their family of their decision and taken their opinions into consideration. We are not dealing with that today.

[Danny Kruger]

Nevertheless, amendments 403 and 404 have been selected for debate, and it is those amendments that would effect that declaration in the Bill.

[The Chair]

I ask the hon. Gentleman to take the spirit of what I am saying into account.

[Danny Kruger]

I am grateful to you, Mr Dowd, but I want to explain why these amendments are appropriate to the Bill.

The patient would have the opportunity to declare clearly that they do not have a family. I take the point made by my right hon. Friend the Member for North West Hampshire; it is not always clear what a family is. Nevertheless, if the patient wants to specify that they have no family or do not want to inform their family, the amendments would give them that right. I want to emphasise the importance of this consideration. I recognise that clause 9, which will come later in the process, includes consideration of the family. It states that, in so far as the assessing doctor considers it appropriate, they may advise the patient to inform their family, so there is recognition of that question a little later. My suggestion is that it should come earlier because it needs to take place before the first declaration is signed.

Crucially, we need to consider the wider impact of not considering or involving the family, particularly when children or dependants are involved. The Bill accepts the scenario where a family can find out after the fact—not through any formal notification, they just discover—that their loved one has ended their life with the help of doctors and the state. Families can be badly impacted by an assisted suicide: clinical grief disorders, depression and post-traumatic stress disorder are all harms that can follow from a family member taking an assisted death. It is unethical and irresponsible not to factor that in as we discuss and design the new law.

A parent may choose to end their life under the Bill, but is not required in any way to consider notifying their family. I wonder if the sponsor could clarify what would happen if they were the sole carer of a minor—would there be an obligation for anyone to inform the child that this was happening? One hopes that that would be an extremely rare scenario; nevertheless, it is possible under the Bill.

I want to mention two more groups quickly. In written evidence, a group of anorexia nervosa sufferers and carers said:

“The Bill does not anticipate situations where someone seeks to end their life as a result of cognitive symptoms inherent to the illness, as is the case with AN. For these patients, families would often be needed to advocate for their loved ones and their potential to recover…Without family involvement, patients may make decisions in isolation, potentially influenced by cognitive distortions or feelings of hopelessness inherent to the illness.”

I hope that we do not want to allow that scenario.

Finally, Dr Jamilla Hussain, who we have heard from a few times, said in written evidence that in her

“consultation with structurally disadvantaged ethnic minority groups”—

which include Pakistani, Roma and Black Caribbean community groups, they showed much concern about the exclusion of families. She said:

“it was emphasised that, traditionally, family and community members provide hope and strength when someone feels like life is too much. There is apprehension that such expressions of care and support could be reframed through a medical or legal lens as coercion.”

That is the saddest thing, which was hinted at quite strongly—in fact, stated explicitly—in some of the evidence sessions. It has been suggested that wanting a loved one to live is seen by doctors as a form of coercion that should be resisted; that trying to argue a loved one out of an assisted death is the coercion that we need to guard against and, on that basis, we should not be making any expectation that families are informed. What a tragic thing for us to say. To enable doctors to issue lethal drugs that kill people without their family knowing is an absolutely tragic thing. I beg the Committee to consider what on earth we are doing allowing that.

[The Chair]

I apologise to the Member, who was within his rights to speak to amendments 403 and 404.

--- Later in debate ---

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

I rise to set out why—reluctantly—I cannot support amendments 403 and 404, which have been tabled by my hon. Friend the Member for East Wiltshire. It is not because of the principle involved, because my hon. Friend was very clear in setting out the amendments. They would not provide for a prescriptive situation where an individual must tell their family. A range of options are set out, which I anticipate that any sensible and responsible doctor or clinician would take a patient through, encouraging them to involve their family in their decision making.

The issue that I have is around the legal clarity of the wording of the amendments, because under the English and Welsh legal system there is no statutory definition of “family”. There is a concept of family, but the concept of family to me may be very different from that of my neighbour, or from that of someone who lives in another city. For example, for some people stepbrothers, stepsisters and step-parents are very much part of their family; for others, they are not. For some people, unmarried couples with children are a family; for others, they are not. For some people, unmarried couples without children are a family; for others, they are not.

[Danny Kruger]

I take that point; families are difficult to define. Nevertheless, the Bill currently refers to the opportunity for a doctor, or the suggestion that a doctor,

“in so far as the assessing doctor considers it appropriate, advise the person to consider discussing the request with their next of kin and other persons they are close to.”

That is more precise. Would my hon. Friend accept an amendment along the lines that I have proposed, prior to the first declaration, but using the language that is currently in the Bill about

“their next of kin and other persons they are close to”?

[Dr Shastri-Hurst]

That would satisfy me. The reason I say that is because at the moment the wording is too broad and ill-defined. The question is: is this about the closeness and proximity of a relationship? The suggested wording that my hon. Friend just put forward would be much closer to that and much clearer, and more akin with the language of medical registration. When someone turns up in A&E, they are asked to give the name of their next of kin. That defines the closeness, the proximity and the permanency of that relationship.

If my hon. Friend was perhaps to consider withdrawing this amendment and tabling it again in an alternative form, or rewording it, that would certainly be something that I would be open to supporting. I have outlined why, as the amendments currently stand, I cannot support them.

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

Danny Kruger Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

The hon. Gentleman is making a very important point, and he picks up the observation by the hon. Member for Bradford West that there is a link, through the Equality Act, with disability. It is absolutely right that we address that. Does he agree that the way to do so is not to accept amendment 181 tabled by the hon. Member for Spen Valley, which would retain the dangerous words “only” and “for the avoidance of doubt”, but to accept amendment 11, which would exclude those words and ensure that someone could not get an assisted death by reason of disability or mental illness? Because of that concern, perhaps we need to table a further amendment to exclude the Equality Act from the operation of this clause, and I await the Chair’s ruling on whether that is possible at this stage. Amendment 181 does not refer to the Equality Act, although the Bill does, so we should follow that point. Rather than accepting that amendment, which would not move us forward, we should accept amendment 11. I hope that that is clear and that it might satisfy the hon. Gentleman’s concern.

[Daniel Francis]

I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.

We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.

--- Later in debate ---

[Dr Simon Opher (Stroud) (Lab)]

I would like to make a short comment. It is very important that the Committee does not get too hung up on anorexia, because the Bill is very clear about what is excluded. Deprivation of nutrition is always reversible. Someone who is anorexic and about to die would go into multi-organ failure and be unconscious and unable to give any sort of consent. Before that, the nutritional deprivation is reversible and therefore not covered under the Bill.

[Danny Kruger]

I just wanted the hon. Gentleman to comment on the reality in our NHS at the moment that people are described as terminally ill with anorexia. They are given the label of being terminally ill and put on palliative care pathways because it is assumed that their condition is not reversible. Doctors today, in this country, are concluding that people with eating disorders are going to die and are treating them accordingly. Is he aware of that, and how does it affect his comments?

[Dr Opher]

I am not aware of that. I believe that this is always reversible until a person goes into the absolute terminal stage of multi-organ failure. Before that, we can reverse nutritional deprivation. I do not accept that point, and I think it is important that we look at the Bill in all its detail. I think it has enough safeguards to exclude someone with anorexia.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Mr Dowd. Although it is for Parliament to progress any Bill, the Government have a responsibility to make sure that legislation on the statute book is effective and enforceable. For that reason, the Government have worked with my hon. Friend the Member for Spen Valley; where changes have been agreed mutually between her and the Government, I will offer a technical, factual explanation of the rationale for those amendments. That applies to amendment 181 in this group.

This group of amendments is linked to how the Bill’s definition of a terminal illness applies to those with a mental disorder or disability. Amendments 399 to 401 would remove the term “medical condition” from the Bill’s definition of a terminal illness, so that only those with an inevitably progressive illness or disease would be able to request to end their life, rather than, as under the current drafting, those with a “disease or medical condition”.

The amendments could narrow the scope of those who may access assisted dying services. However, clinical advice suggests that the use of the terms has changed over time, may not be used consistently and remains debated in both medical and lay circumstances. Removing the term “medical condition” may lead to disputes or protracted debates about whether a particular condition is or is not a defined disease or illness, despite there being medical consensus around whether it will lead to death within six months.

[Danny Kruger]

I am grateful for that clarification, but it rather concerns me. Can the Minister elucidate exactly which conditions might fall into the category of medical condition that would not be captured by “illness” or “disease”? Does he accept the point that I made in my speech—that the interpretation of the law by the court will be that the phrase expands the definition of a terminal illness beyond illness or disease, as it is in the current law? What are the new conditions that will be captured by the term?

[Stephen Kinnock]

What the hon. Member will have picked up throughout this debate, on every day that we have met, is that the Government are concerned about adding or taking away terminology that delivers clarity, stability and familiarity.

I have to say that I am quite torn on the hon. Member’s amendment 399, because I absolutely see where he is coming from. It is one of those situations in which my position as a Government Minister is made somewhat more complex by my personal view that his amendment is perfectly reasonable. My instinct—speaking personally as a Member of Parliament, rather than as a Government Minister—is that the remaining terms in the Bill, if we removed “medical condition”, would continue to cover the waterfront or spectrum of conditions. It is possible that this is a case in which there has been an overabundance of caution on the part of the Government. I am delivering the Government’s position, but I want the hon. Member to know that that will not necessarily determine how I vote if this amendment does go to a vote.

[Danny Kruger]

I was going to remind the Minister that he is, in his strange Jekyll and Hyde personality, speaking as a Minister but voting as a Member of Parliament, so if he has given the Government’s view that my amendment is not acceptable, but he personally thinks that it is, I hope that he will vote for it.

[Stephen Kinnock]

It is a well-made case; I am still reflecting on it, because of the somewhat complex nature of my role on this Committee, but I am inclined to support the hon. Member’s amendment.

Amendment 11 also seeks to amend clause 2(3). Our assessment of the effect of this amendment is that a person who has a mental disorder and/or a disability may not qualify under the Bill as terminally ill, even if they have an inevitably progressive illness and can be reasonably expected to die within six months. There might be concerns from the point of view of the European convention on human rights and the Equality Act if the amendment were passed as currently drafted, because its effect would be to exclude people from the provisions of the Bill if they had a disability or a mental disorder. That may not be the intention of the hon. Members who tabled the amendment.

I turn to amendment 181. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have advised my hon. Friend the Member for Spen Valley in relation to the amendment. It clarifies that a person who seeks assistance to end their own life based only on a mental disorder or a disability, or both, would not be considered terminally ill for the purposes of the Bill. Such a person would therefore not be eligible to be provided with assistance to end their own life under the Bill. Someone who has a disability or a mental disorder, or both, and who also already meets all the criteria for terminal illness set out in the Bill would not be excluded by the amendment, as drafted. The amendment therefore brings important legal clarity to the Bill.

Amendment 283 sets out that a person who has one or more comorbidities, alongside a mental disorder within the meaning of the Mental Health Act 1983, would not be considered terminally ill by virtue of those comorbidities alone. The reality of modern healthcare is that many patients, not least those towards the end of life, will be dealing with several conditions or comorbidities. The term “comorbidity” in a clinical context can sometimes be used to distinguish the main problem that someone has experienced experiencing from additional but less serious problems, but it can also be used by those specialising in one or more other aspects of a patient’s care to distinguish their area of focus from other issues.

In the context of the Bill, the essential test is whether any morbidity, comorbidity or otherwise, meets the requirements in the Bill. Although it is unlikely that a terminal morbidity would be thought of as a comorbidity, it is not inconceivable that it might be, for the reasons that I have set out. The phrasing of the amendment, notably the term “alongside”, potentially increases that possibility. The effect might be that a condition that would otherwise be considered terminal would instead be considered a comorbidity alongside a mental disorder. The amendment would prevent a person with a mental disorder who would, but for the amendment, have been considered terminally ill from accessing assisted dying services under the Bill.

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. However, to ensure that the legislation works as intended, we have advised the sponsor in relation to amendment 181, to further clarify the Bill such that only having a disability and/or mental disorder does not make a person terminally ill and eligible for assistance in accordance with the Bill.

--- Later in debate ---

[Kim Leadbeater]

My apologies; I am speaking to amendments 399, 400 and 401. I will be happy to come back to that point at the appropriate time, but I first want to finish my comments on those amendments.

As I have said, the hon. Member for East Wiltshire has done a good job this morning of improving the clarity of the issue. That shows that the Committee is doing its job and working effectively. I am therefore open to supporting those amendments.

[Danny Kruger]

I am delighted to hear it. I am grateful to the hon. Lady and to other hon. Members who have indicated their sympathy for the amendment. I look forward to the Division and to the Minister’s decision.

May I follow up on a point made by the hon. Member for Bradford West? I do not know whether the hon. Member for Spen Valley would like to intervene to help me understand the point. Amendment 181 would redraft clause 3(2) to make it clear that a person does not qualify as terminally ill

“only because they are a person with a disability or mental disorder”.

It would add to clause 3(2) the following additional sentence:

“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if…the person meets the conditions in paragraphs (a) and (b)”.

Does the hon. Member for Spen Valley agree that that will essentially mean that the clause does nothing? It confirms the terms of eligibility set out earlier in the Bill, and confirms that a person would still be eligible to receive an assisted death if they had conditions that were a consequence of a mental disorder or a disability. If she feels like intervening on me, I would like her to help me understand what that additional sentence adds. To my mind, it negates the purpose of the clause.

[Dr Tidball]

I stand here as a disabled woman. Under the Bill, as a disabled woman, I would not —by reason only of being a disabled woman—be eligible to have access to assisted dying. The amendment clarifies that I would not be eligible only through being a woman who has a disability. However, if I develop a condition that means that I have a terminal illness, leaving me with only six months left to live, I would be permitted to have that choice. It is right, I think, that I should have that choice. As I said in my Second Reading speech, this is about giving people access to a good death and living a good death. This is about giving that choice, where they choose to make it, to disabled people, while building in sufficient safeguards so that this is not something pressed upon them—

--- Later in debate ---

[Danny Kruger]

I am grateful, Mr Dowd. I recognise the force of what the hon. Member for Penistone and Stocksbridge is saying. To be clear, the amendments that I am supporting would not deny disabled people any of the other rights that are being awarded in the Bill. She is absolutely right that a disabled person with a terminal illness would qualify just as much as someone who was not disabled. That is absolutely right.

The purpose of the amendment is to ensure that people whose illness is a direct consequence of a mental disorder in particular would not be eligible. The reference to disability is because of the confusion, which I expect the hon. Member for Spen Valley recognises in current law and guidance, about where the distinction between disability and terminal illness lies. That is our concern. The purpose of the amendment is to ensure that people would not be deemed as eligible for an assisted death in consequence of disability or mental illness. I know that is what the hon. Lady is trying to do with the amendment, and with the clause that it amends, so we are on the same page. Our concern is that, by including the words “For the avoidance of doubt” and the word “only”, we will be leaving quite a large loophole, through which, I am afraid to say, some vulnerable people might fall.

I look forward to the Division on the amendments. We have not been able to discuss them all in close detail, but I am grateful to Members for the debate that we have had.

Amendment 399 agreed to.

[Juliet Campbell (Broxtowe) (Lab)]

I beg to move amendment 123, in clause 2, page 1, line 23, leave out “an inevitably” and insert “a typically”.

This amendment changes the definition of what it is to be terminally ill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.

--- Later in debate ---

[Naz Shah]

Absolutely not. That is not the point that I am making. Eating disorders are reversible, but it has been found that where this kind of legislation has been enacted, across the globe, somebody who has anorexia and decides not to eat then falls within the scope of assisted dying because it becomes a terminal illness.

[Danny Kruger]

I do not want to cut off the hon. Lady in full flow, but I want to echo her points. The hon. Member for Stroud has made his point before and we have had an exchange on it. There is quite a lot of research, to which I refer him, that shows how people in the UK, being treated by the NHS, are having diagnoses of terminal anorexia. It is happening. I refer him to Professor Agnes Ayton, the campaigner Hope Virgo and the eating disorders all-party parliamentary group in this place, which is looking at that. It seems bizarre to us, because of course someone can resume eating, but the fact is that anorexia is treated as a terminal illness in parts of the NHS today.

[Naz Shah]

I concur with the hon. Member’s remarks.

--- Later in debate ---

[Danny Kruger]

I will be as quick as I can be. I recognise the powerful contributions that have been made on a number of the amendments. I pay tribute to the hon. Member for Broxtowe, who made a very interesting speech in support of her amendment 123. I was struck by her point that we should do what we can to reflect the reality of clinical situations in people’s lives. I very much respect the power of the arguments she made. My concern is that by changing “inevitably” to “typically”, her amendment, although it might reflect reality more closely, would widen the scope of eligibility. I am afraid I will not support her amendment, but she made an important speech about how things actually work.

I will speak briefly in support of amendment 282 in the name of the hon. Member for York Central (Rachael Maskell), and of amendments 48 and 402 in the name of the hon. Member for Bradford West. At the end, I will refer quickly to the amendments in the names of the hon. Member for Harrogate and Knaresborough and of my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer). All those amendments, with exception of the last ones, fit the Bill to the campaign—they make the Bill more accurately applicable to the people whom the campaigners have been campaigning for and whom everyone has the most sympathy with.

Amendment 282 in the name of the hon. Member for York Central would restrict eligibility to people with a one-month diagnosis only. I stress that the amendment is probing and I do not propose to press it to a vote on her behalf. She tabled it and I am speaking to it to make the point that, if we are serious about the Bill being for people who are dying and not for people who are not—for people at the very end of their life, as we hear so often—we need to be much stricter about the period of prognosis. I will not repeat points that have been made by other hon. Members, but the fact is that the six-month test is literally as good as tossing a coin. It has a less than 50% accuracy. In particular for advanced cancers and neurological conditions, accuracy is very low.

[Jack Abbott]

A line has to be drawn in the sand somewhere. Will the hon. Member define what an adequate timeline would look like for him to be satisfied?

[Danny Kruger]

The hon. Member invites me to suggest that I think it would be possible to draw a safe safeguard. I do not. I think that one month is better than six months, because with one month we can have more accuracy and doctors are more genuinely right when they say that someone is close to death at that point, while six months is much more inaccurate and 12 months is notoriously inaccurate. If we restrict the Bill by using a time limit, that limit should be as close to death as possible in my view.

[Kim Leadbeater]

Does the hon. Member agree that if we were to reduce it to one month, there would be absolutely no way to have the robust process set out in the Bill—or, indeed, I would argue, to have any sort of robust process?

[Danny Kruger]

I accept that, which is why amendment 282 is probing only. It is trying to demonstrate the point. I recognise that even the expedited process is likely to take up to a month to get through, so that would be difficult. Nevertheless, if our intention is to restrict this to people who are literally in their last days, which is frequently what we hear, I think it would be appropriate to restrict the time.

[Naz Shah]

The hon. Member talks about the amendment being probing. Does he know why we went for six months? Was it was based on research? I am not sure whether he is aware or can help me understand that.

[Danny Kruger]

I am not. I think we have allowed six months to creep into common legal parlance because of the Social Security Contributions and Benefits Act 1992; we now recognise in law that it is possible to have certain rights and entitlements on the basis of a six-month prognosis. I presume that is the basis of it. It does feel like a reasonable period, and I understand the rationale for it, but given the difficulty of prognosis and the intense seriousness of what we are doing, I think it is inappropriate and dangerous.

Another way of achieving greater safety—less precise but perhaps more generous to people who want an assisted death—is to tighten the definition of terminal illness to mean those whom doctors think it is reasonably certain, rather than reasonably expected, will die within six months. That is the intent of amendment 48 tabled the hon. Member for Bradford West. The amendment also insists that the condition is terminal even with “all recommended treatment”, so that somebody could not make themselves eligible by refusing treatment. That is a very important point that the hon. Lady is trying to insist on.

By the way, that does not mean—and I hope people will not conclude that it does—that someone is required to have every treatment that might be possible, including invasive and unpleasant chemotherapy. The point is that it would have to be treatment recommended by the doctor: if the doctor recommends it, then it is appropriate. A doctor might be offering chemotherapy, but they would not be recommending it in all circumstances.

For the avoidance of doubt—an important phrase— I think that the hon. Lady’s amendment 402 is very important too. Just in case nutrition is not seen as treatment—perhaps it is arguable that it may not be—it is very important that we specify explicitly that declining food or drink does not qualify someone for an assisted death.

[Naz Shah]

Does the hon. Member agree that one point that is really important in this afternoon’s debate is that a person has a right to refuse treatment, and indeed food and water, if they have capacity, but that malnutrition is practically reversible? The argument has been made by doctors in Oregon around the voluntary stopping of eating and drinking that doctors cannot legally force a person with capacity to eat, and if they refuse food, their condition can be considered irreversible and terminal. That is the crux of the point. Does he agree with me?

[Danny Kruger]

I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.

I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.

The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that

“there is nothing in the letter of the law”

to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would

“essentially eliminate the criteria of terminal illness,”

because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.

I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.

I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.

The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.

I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.

[Lewis Atkinson]

I rise to speak in favour of the current, tightly drawn eligibility criterion of a six-month terminal diagnosis. I agree with my hon. Friend the Member for Bradford West that that was a central plank of the Bill as introduced and as debated across the House on Second Reading. I therefore rise to speak against all the amendments tabled to the clause.

Dying people want to put their affairs in order. That includes thinking about the death that they want and how they want to spend their time with their family. Dying people do not want to die, but they do not have an option to live. I feel that the way we talk about death perhaps has not been fully reflected in the debate we have had on the amendments.

In my mind, the evidence from elsewhere is very clear that those who seek assisted dying seek approval for it, going through the safeguards—significant safeguards, as set out in the Bill—so that they can spend the remaining time with their family, with enhanced feelings of control and autonomy, removing some of the fear that causes them to ask, “What if I will have no way out of inevitable pain?” That does not mean, of course, that people wish to die more quickly. The fact that the Bill sets out a six-month eligibility criterion does not mean that people will rush to end their own lives as soon as it is possible to do so. It means that six months is the threshold at which they can start potentially exploring the options and getting through the onerous—rightly onerous—process of eight different stages of capacity checks, three different stages of approval, multiple doctors and so on, so that they have the option. Indeed, as my hon. Friend the Member for Spen Valley set out earlier, a significant proportion of people who have been approved for assisted dying elsewhere do not take up that option, because their end of life is not painful—and that is fantastic—or can be managed through palliative care. That is something that we would all want. However, knowing that they have the option significantly increases their quality of life, their ability to relax with their families and their ability to spend time with their loved ones.

--- Later in debate ---

Division 9

Question accordingly negatived.

Ayes: 8

Noes: 15

[Danny Kruger]

I beg to move amendment 12, in clause 2, page 2, line 2, at end insert—

“(c) their illness, disease or medical condition is found on a list that the Secretary of State may by regulations specify.”

This amendment would require an illness, disease or medical condition to be specified in regulations that may be made by the Secretary of State to be considered a terminal illness under the Act.

[The Chair]

With this it will be convenient to discuss amendment 13, in clause 2, page 2, line 10, at end insert—

“(4) Regulations under subsection (1)(c) are subject to the affirmative procedure.

(5) The Secretary of State may, where they consider it appropriate, make regulations that expire after twelve months from their being made to include temporary additions to the list under subsection (1)(c).

(6) Regulations under subsection (5) are subject to the negative procedure.”

This amendment is consequential on Amendment 12 and specifies regulations under that amendment must be made by the affirmative procedure. Temporary additions could be made by regulations subject to the negative procedure.

[Danny Kruger]

I will be fairly brief in speaking to the amendments, but they go to the heart of things. We have tried to tighten the Bill by excluding medical conditions from the definition of a terminal illness; I am very pleased that the Committee has accepted that tightening. We have also sought to exclude illnesses that are consequent on mental disorders and disabilities; we have not succeeded with that tightening. We have further sought to tighten the Bill by circumscribing the prognosis period more precisely.

The amendments would tighten the Bill further by explicitly listing the illnesses that qualify. The argument is quite straightforward. The problem that we are trying to address is that, under the Bill, it will be up to doctors and potentially to the court—or a panel, if that is where we go—to decide whether a particular condition is terminal. It would be set by case law and by medical doctors deciding what conditions qualify.

--- Later in debate ---

[Stephen Kinnock]

I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.

I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it

“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.

The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.

[Danny Kruger]

I sense that the wish of the Committee is probably not to accept the amendment, so I do not propose to press it to a Division, but we have just heard quite clearly, in response to the amendment, that the Bill is essentially permissive. Once again, we have declined to put clear parameters around the eligibility for this new law. We have heard specific conditions mentioned so many times in the course of the debates over the preceding months. It is a shame that we are not prepared to state those conditions clearly in the Bill, with the opportunity for Parliament to amend them over time.

I end by echoing a point that the hon. Member for Spen Valley made about the importance of good data. I hope that if the Bill passes, we will have the best data collection in the world. I am afraid to say that data collection is not good in other jurisdictions. Nevertheless, it is possible to see how often in Oregon, Australia, Canada, and Europe, albeit in a minority of cases, conditions that most people would not recognise as deserving of assisted dying, including anorexia, arthritis, hernias and diabetes, are listed as causes of death. Indeed, so is frailty, as I discussed earlier.

My fear is that if we pass the Bill, we too—if we do data collection properly—will have a shameful appendix to the annual report showing that people have had an assisted death for reasons that most people would regard as inappropriate. I will leave it there. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)

This amendment is consequential on Amendment 399.

Amendment proposed: 402, in clause 2, page 2, line 6, at end insert—

“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”—(Naz Shah.)

This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.

Question put, That the amendment be made.

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

Danny Kruger Excerpts

Wednesday 29th January 2025 Public Bill Committees

[Stephen Kinnock]

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

[Danny Kruger (East Wiltshire) (Con)]

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

[Danny Kruger]

Q It does, very helpfully. Can I come back to you quickly? You point out that to suffer is essentially a subjective experience, so it is very difficult for somebody from the outside to determine whether somebody else is suffering to a certain threshold. By that reasoning, it should simply be the case that people who feel that they are suffering intolerably should be eligible. Why do you not think that that is what we should have in the law?

Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.

Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self-confess suffering in the absence of an end-of-life condition, that leads to questions about whether it applies to a 21-year-old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.

The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.

Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end-of-life choice among a range of end-of-life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.

I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end-of-life choice, and not the philosophy of care that palliative care is.

--- Later in debate ---

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

[The Chair]

I call Simon Opher.

Medicines and Healthcare Products Regulatory Agency

Danny Kruger Excerpts

Thursday 16th January 2025 Commons Chamber

[Danny Kruger (East Wiltshire) (Con)]

I will be as quick as I can be, Madam Deputy Speaker. I want to talk about over-prescription and the vaccines. I acknowledge my role as the co-chair and past chair of the beyond pills all-party parliamentary group, which the hon. Member for Stroud (Dr Opher) chairs in this Parliament. I thank the secretariat for the great work it does to support the group.

We have a crisis of over-prescription in our country, with the rates of prescription drugs being given to people going up vertiginously. Prescriptions have doubled over the last 12 years. Nearly 9 million people—one in five adults—are on antidepressants, which is way too high a figure. Many people should never have been put on these drugs—they should have been offered non-chemical alternatives—and they should be supported to withdraw. I very much hope that the MHRA and the Government more widely will heed the calls we are making on the APPG for better training of GPs, better labelling of these drugs and withdrawal services for people who want to come off them.

In addition to social prescribing, which I am sure the hon. Member for Stroud will talk about from his experience, I want to mention the important potential role of digital therapeutics, which are not properly commissioned by the NHS but could be a big part of the answer.

I want to talk briefly about the role of the MHRA in over-prescription, particularly with respect to anti-depressants. We know from evidence, from anecdote and from coroners’ reports that SSRIs—selective serotonin reuptake inhibitors—can cause people to take their own lives. There are dozens of documented cases. The most prominent of those recently has been the tragic case of Thomas Kingston, whom I knew and whose family I have been speaking to since his death. Tom shot himself last February after being put on SSRIs. In fact, he was put on that SSRI after another SSRI caused him to feel absolutely awful, so he was put on two in very quick succession.

The coroner for Gloucestershire, who conducted the inquest, recommended much clearer communication of the risks of these pills, and she is not the first coroner to make that recommendation. I pay tribute to The Times for its campaigning to highlight the fact that so many coroners’ reports have not been heeded by the authorities. I wish they had been, as it might well have saved many lives.

[Esther McVey]

The number of people who have taken their lives after coming off SSRIs shows that it is not a one-off or rare. There are many people, including one of my constituents, aged only 25, who took her life. I congratulate my hon. Friend on raising this issue. What more can we do to raise awareness of the effects of withdrawal from these antidepressants?

[Danny Kruger]

The tragedies that we read and hear about are bringing to light the chronic problem of over-prescription in our society. I am afraid that the MHRA is to blame. A review is under way, but it does not sufficiently recognise the direct harms that these pills can induce in people. I hope that through better labelling and regulation, and a better culture of alternative prescriptions, we can reduce the tragedies that we are so familiar with.

Let me quickly comment, following on from my hon. Friend the Member for Christchurch (Sir Christopher Chope), on the experience of the MHRA during the covid epidemic. The vaccines were developed at a frantic rate. We can be very impressed by the speed of the taskforce and pay tribute to the work of the private sector, particularly our world-leading research base. The Government managed to act at great speed, largely because they bypassed Whitehall. But significant questions remain, which my hon. Friend raised, about whether the vaccines are genuinely safe and effective.

It is right that people ask questions about the data on excess deaths and wonder if there is a connection with the vaccine—that is not inappropriate. Ultimately, there is only one way to answer that question: to have the data. However, we do not have access to that data. The Government hold it and, extraordinarily, they have made it available to the pharmaceutical companies that produce the vaccines, but not to researchers—individual-level death data that shows who was dosed with what vaccines and which of them died.

In a debate in the House last April, and previously in correspondence with Ministers, I clearly and simply asked for that data to be made available to researchers, anonymised as appropriate. The UK Health Security Agency has admitted that the data exists, but has refused to release it, almost unbelievably, because of the risk to the mental health of the relatives of the dead. That begs the question, does the data show a link between the vaccines and those deaths? The information tribunal is due to rule on that matter shortly, and I fervently hope that common sense will prevail and the data can be made available to disprove the link, so that our minds and those of our constituents can be put at rest. There is also a case with the information tribunal about the data held by the MHRA on the vaccines’ safety for pregnant women. Again, the agency has been withholding that data for two years.

Let me finish by observing, in the light of the comments made by hon. Members across the House, that we have a genuine problem with the regulation of the medical industry and of medical products. I very much welcome the appointment of R. F. Kennedy to the role of Health Secretary in the United States. He will shake things up over there. Perhaps the Minister can be our own RFK over here, and bring some genuine transparency to the health system.

--- Later in debate ---

[Alison Bennett (Mid Sussex) (LD)]

I thank the right hon. Member for Tatton (Esther McVey) for bringing forward this really important debate and for her excellent opening speech, which was very informative. In the interests of time, I will keep my remarks brief.

The Medicines and Healthcare products Regulatory Agency is tasked with vital work, and we all agree that it is there to protect and promote public health. As a number of Members have set out, it is concerning that despite the MHRA’s obvious importance, it clearly faces a number of challenges that need to be addressed. The Cumberlege review highlighted a conflict of interests, because the MHRA relies on fee income from pharmaceutical companies; as the hon. Member for Stroud (Dr Opher) said, this is a case of the agency marking its own homework. It is not a great way to set up its funding.

The hon. Member for Dewsbury and Batley (Iqbal Mohamed) made a really important point about Brexit, which is the elephant in the room. As with so many parts of our economy, Brexit caused major disruption to the pharmaceutical industry. Among other things, the loss of the prestigious European Medicines Agency from London to Amsterdam damaged trust in the UK’s pharmaceutical investment space.

[Danny Kruger]

Will the hon. Lady give way?

[Alison Bennett]

In the interests of time, I will not.

Brexit caused significant confusion for companies looking to sell products from Great Britain to Northern Ireland. It has also slowed down the time in which novel medicines and treatments can be approved for use, as pharmaceutical companies have understandably prioritised obtaining a single approval, allowing access to 27 markets via the EMA.

Meanwhile, strict affordability models imposed by the National Institute for Health and Care Excellence mean that companies face a further hurdle before their products can reach patients. Again, that diminishes the attractiveness of the UK market post Brexit. To help address this issue, the MHRA introduced the international recognition procedure a year ago to streamline the authorisation process by incorporating assessments from trusted regulatory partners worldwide, including the EMA. However, that relies on those partners having already approved the products, so UK patients will inevitably still have access to medicines later than people in other countries, including EU member states. When I met representatives of Roche Diagnostics, based in Burgess Hill in my constituency, they told me about the industry’s serious concerns that the additional GB-specific conformity checks required could be prohibitively expensive and lead to significant delays.

As things stand, the forecast is looking gloomy. My Liberal Democrat colleagues and I are committed to addressing these issues head-on, and to helping the MHRA become world leading. First, we are pushing to expand the MHRA’s capacity by halving the time for treatments to reach patients suffering from illnesses such as cancer. Secondly, we encourage the Government to fully implement the recommendations of the Cumberlege review, including on compensation, corrective surgery and psychological support for those who were failed and who suffered from faulty devices and drugs. Thirdly—this is vital—the Government should actively seek a comprehensive mutual recognition agreement with the EMA to promote faster access to new and novel medicines and medical devices. That would reduce red tape, cost and friction, providing hope for those who need access to these lifesaving and life-enhancing medicines and devices.

Hospice and Palliative Care

Danny Kruger Excerpts

Monday 13th January 2025 Commons Chamber

[Danny Kruger (East Wiltshire) (Con)]

I will not focus on assisted dying/assisted suicide this evening, because as the hon. Member for Wimbledon (Mr Kohler) said in a good opening speech, we are all united in this place in our desire to see improvements in the palliative care system, but I feel compelled to make this simple point of fact. Studies and research show that in jurisdictions and countries around the world that have introduced an assisted dying/assisted suicide law, the investment in and the quality of palliative care has declined, relative to those that do not have an assisted dying/assisted suicide law. That is for reasons that are fairly comprehensible. That is a fact. I implore the House: let us fix our palliative care system before we consider opening up the law on assisted dying.

The United Kingdom is, of course, the birthplace of the hospice movement, and we have some of the best palliative care services and specialists in the world, but as we have heard this evening, our system simply is not working. We have demand for palliative care and hospice services on a scale that was never anticipated in the post-war years in which the NHS was developed. The challenges of growing demand have been sadly exacerbated by decisions that the Government have made, as we have heard.

[Sir Edward Leigh (Gainsborough) (Con)]

On Friday, I went to St Barnabas hospice in Lincoln, our local hospice, which does wonderful work, and talked to its chief executive officer, who is tearing his hair out. Because of the national insurance increase, he is losing £300,000 a year. He pays his nurses less than the local hospital; he has to. He is literally funding the NHS and cutting his own service in the hospice. I beg the Government to think again about the national insurance increase on hospices.

[Danny Kruger]

My right hon. Friend makes absolutely the right point. It echoes the experience of hospices across the country. Prospect House, which is on the edge of Swindon and is in my constituency of East Wiltshire, receives only 23% of its funding from the taxpayer. It faced a significant deficit this year, so it took immense pains and steps to bridge its funding shortfall. There was a huge response to a public fundraising appeal, and it raised over £170,000 from the local community, but that was before the Budget. The effect of the national insurance increase alone on Prospect House is £170,000, so the public’s generosity has been entirely wiped away by the Chancellor, and Prospect House is back exactly where it was.

Julia’s House in Devizes is a children’s hospice, and the most wonderful, moving place that I have visited in my time as an MP. It has had a similar experience. It gets only 8% of its budget from the taxpayer. Its deficit has gone up from £900,000 before the Budget to £1.1 million now. We therefore desperately need a comprehensive review of palliative care.

I pay tribute to the hon. Member for York Central (Rachael Maskell), and to Baroness Finlay in the other place. They are leading a review of palliative care, with a view to coming forward soon with recommendations for the Government on how to improve the system. Indeed, thanks to Lady Finlay’s amendment to the last Government’s Health and Care Act 2022, integrated care boards are required to commission palliative care. Unfortunately, no money was attached to that amendment, and as we have heard, the way in which some ICBs commission care is not good enough. I regret, for instance, that the ICB in our area will not commission Julia’s House, the children’s hospice that I mentioned, so we need a better commissioning model.

I take issue with the point made by the hon. Member for Birmingham Erdington (Paulette Hamilton) that ICBs cannot find the money for these services in their budgets. They could if they did their job properly and commissioned services locally. They should be able to move budgets around. The fact is that if proper investment is made in palliative care, money is saved elsewhere in the NHS; that is the crucial point. Expensive bed stays in hospital would be reduced, as would demand on ambulances and other services. It should be possible to improve palliative care within the ICBs’ current envelope.

We do not want a system of enforced uniformity, or a great new national bureaucracy. I am concerned to hear some hon. Members suggest that we nationalise the system; I do not think that is right. We need to ensure that ICBs can do the job that they need to do, and that hospices can innovate as they want.

--- Later in debate ---

[The Minister for Care (Stephen Kinnock)]

I pay tribute to the hon. Member for Wimbledon (Mr Kohler) for securing the debate and making such a powerful and thoughtful opening speech. I thank hon. Members from across the House—there are too many to list. It would be impossible to capture the richness of the contributions made. Something like 28 Back-Bench Members made speeches—I am sure Madam Deputy Speaker will correct me if my numbers are not quite right. It was an excellent debate, and I thank everybody for their contribution. I thank all those who work or volunteer in the hospice and palliative care sector for the deeply compassionate care and support that they provide to patients, families and loved ones when they need it most.

This Government are committed to building a society in which every person receives high-quality, compassionate care, from diagnosis through to the end of life. We will shift more care out of hospitals and into the community, to ensure that patients and their families receive personalised care in the most appropriate setting. Palliative and end of life care services, including hospices, will have a vital role to play in that shift. The reality is that we have a mountain to climb. Our health and care services are on their knees, but this Government will strain every sinew to build them, and to create a health and care system that is once again fit for the future.

In England, integrated care boards are responsible for the commissioning of palliative and end of life care services to meet the needs of their local population. To support ICBs in that duty, NHS England has published statutory guidance and service specifications. While the majority of palliative and end of life care is provided by NHS staff and services, we recognise the vital part that voluntary sector organisations, including hospices, play in providing support to people at end of life, as well as to their loved ones.

Most hospices are charitable, independent organisations that receive some statutory funding for providing NHS services. The amount of funding each charitable hospice receives varies both within and between ICB areas. The variation is dependent on demand in the area, and on the totality and type of palliative and end of life care provision from NHS and non-NHS services, including charitable hospices, within each ICB footprint.

We understand the financial pressures that hospices have been facing, which is why last month I was truly proud that this Government announced the biggest investment in hospices in England in a generation. It will ensure that hospices in England can continue to deliver the highest-quality care possible for patients and their families and loved ones.

[Danny Kruger]

I also welcome that, and congratulate the Minister on getting that money out of the Treasury, but will he acknowledge that there is a difference between capital and revenue? Hospices urgently need support for their day-to-day running costs, not just more money to support the capital. They also need capital support, but that is less crucial.

[Stephen Kinnock]

I take the hon. Gentleman’s point, but hospices face a range of pressures. The capital expenditure injection that we have provided will help them in the round. Clearly, anything that helps a hospice with its budget in the round, be it capital or revenue, will help the hospice.

We are supporting the hospice sector through a £100 million capital funding boost for adult and children’s hospices, to ensure that they have the best physical environment for care. There is also £26 million in revenue funding to support children and young people’s hospices. The £100 million in capital funding will deliver much-needed improvements—from refurbishments to overhauling IT systems and better facilities for patients and visitors—during the remainder of 2024-25 and throughout 2025-26. The investment will help hospices to improve their buildings, equipment and accommodation, so that patients continue to receive the best care possible.

Hospices for children and young people will receive a further £26 million in revenue funding for ’25-26 through what was known until recently as the children’s hospice grant. That investment demonstrates the Government’s recognition of the importance of integrating services to improve the treatment that patients receive. Furthermore, through our plans for neighbourhood health centres, we will drive the shift of care from hospitals to the community, which will bring together palliative care services, including hospices and community care services, so that people have the best access to treatment through joined-up services.