Daniel Francis
MP for Bexleyheath and Crayford · Labour · United Kingdom
“As the Minister said, we were friends for many years in London local government prior to being elected to this place. I want to make two points. First, there is the issue of the Changing Places that have been provided in recent years and the amount of information out there about them.”
“As the Minister knows, I will hold her to account on this issue and continue to pursue it. I thank her very much for the commitments that she has given today that we can continue to pursue. I thank the hon. Members for Chester South and Eddisbury (Aphra Brandreth), for Bath (Wera Hobhouse) and for Strangford (Jim Shannon), my hon.”
“An expansion of capital funding for Changing Places toilets would lead to people with profound disabilities accessing more opportunities and more families and individuals contributing to our hospitality businesses, theme parks, leisure facilities and sports grounds—the list goes on. There was, of course, a previous fund.”
“I turn now to the importance of maintaining Changing Places toilets. I mentioned last year that, in Bexleyheath town centre, we had to close a Changing Places toilet because of the vandalism it was receiving, with people living in it and dealing drugs in it.”
“Although I acknowledge that changes to building regulations ensure that facilities continue to be installed in new buildings, I retain concerns that older buildings would greatly benefit from having a Changing Places toilet installed.”
“One said: “Without access to an appropriate facility, I am left with impossible choices: ending outings early, avoiding certain venues altogether, or changing my daughter on the floor of an accessible toilet, which is neither hygienic, safe nor dignified.” I have read through the responses to the survey, and there was a lot of appreciatio…”
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“I accept that, in some normal circumstances, doctors and medical professionals are not present in the room at the time of death; at other times, they are present. The amendment would mean that if something were to go wrong and someone was having a painful reaction to the drugs, the doctor would be there to see and help. I do not understand what the Bill means when it says the doctor does not have to be in the same room. How far away would the doctor have to be? One subsection says the doctor has to remain with the person, and the following subsection says they do not have to be in the same room. If the Bill were to pass, we would be asking doctors to do something that is unprecedented.”
“It is a pleasure to serve under your chairship, Sir Roger. I will speak to amendments 429 and 430 in my name. During oral evidence, we discussed the issues in subsections (9) and (10) of clause 18 and whether there is a contradiction. Subsection (9) states that the co-ordinating doctor “must remain with the person” and subsection (10) says: “For the purposes of subsection (9), the coordinating doctor need not be in the same room as the person”. We also discussed how that works in other jurisdictions. My amendment 429 would deal with that conflict. If the Bill were to become law, that conflict could be queried. We also need to consider the possibility of complications. Clearly, if there are complications and the doctor is not in the same room, they would not necessarily be aware of those complications.”
“I hear what my hon. Friend says, but the wording of clause 18(9) and (10) is ambiguous. Subsection (9) says that the co-ordinating doctor must remain with the person until “the person has died”, but subsection (10) says that the doctor “need not be in the same room”. I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments on that?”
“Too many carers of disabled people end up with physical and mental health disabilities themselves, and end up trapped in the same system as their loved ones. What more can the Secretary of State do with her colleagues in the Department of Health and Social Care and the Department for Education to end that trap?”
“Of the 54% of research that is specifically about rare cancers, only 16% is focused on brain and nervous system cancers. I therefore welcome this Bill, thank my hon. Friends the Members for Edinburgh South West and for Mitcham and Morden, and place on record my support for the aims of the Bill—to support research, and to support those impacted by rare cancers.”
“I have seen at first hand how devastating glioblastoma can be: my dear friends and constituents, Ann and Richard Lucas, lost their son Fionn in 2022. Fionn was diagnosed with glioblastoma aged 58 in June 2022, and his cancer left him with a very short time to live—he died two months later. The Lucas family has supported the work of the Brain Tumour Charity to help find new treatments, offer the highest level of support and drive urgent change, given the charity’s aims of saving and improving lives and carrying out research into brain tumours globally. Glioblastomas are fast-growing brain tumours. They are the most common type of cancerous malignant brain tumour in adults, yet as has been said, there is still a lack of funding.”
“I welcome the fact that it will place a duty on the Secretary of State for Health and Social Care to facilitate or otherwise promote research into rare cancers. The Bill will ensure that appropriate arrangements are in place for patients to be easily contacted about research opportunities and clinical trials, and will also ensure that there is adequate oversight of research delivery for rare cancers. I also pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her dedication in bringing glioblastoma and other types of brain cancer to the forefront of the political debate. I would like to mention the all-party parliamentary group on brain tumours and its work to raise awareness of the issues facing the brain tumour community.”
“I pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill and for his work in bringing about this necessary debate on rare cancers. I also pay tribute to all Members who have spoken today, but particularly to my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn) for his heartbreaking tribute to his brother. Like too many across this House and throughout the United Kingdom, I have been on the receiving end of the devastating news that a loved one has been diagnosed with cancer, but when that cancer is defined as rare, it is infinitely more terrifying, when confronted with the reality that there is a lack of funding and research dedicated to those cancers. I therefore welcome the three steps in the Bill to encourage further research into rare cancers.”
“Being a young carer is so important to her life, so I see that situation first hand. I pay tribute to my hon. Friend the Member for Harlow for his work as chair of the all-party parliamentary group for young carers, and for securing the debate. It is a subject very close to both of our hearts, as he knows. I look forward to hearing the Minister’s response.”
“Her sister needed full-time care support and no carers were allowed in the house. She dealt with that admirably. My daughter is lucky, as my hon. Friend the Member for Harlow said. We got by, and she was certainly my No. 2 during that period in keeping things going in the house. We got through it, and her secondary school, where she started last September, recognises carers—it recognises the contribution that she makes and the support that she may sometimes need. Particularly with twins, the issues become more predominant as they get older; my daughter has a sister who speaks 12 words, while she speaks about 20,000, frankly. As the gap between them gets bigger, there is still the doting bond, and the feeling of, “That is my twin, and I will be there most probably forever to support them,”—even after I’ve gone.”
“I was hugely impressed that the majority of those young people received awards because they are young carers—they care for family members and in many cases also raise money for local charities associated with their family member’s disability. I know my hon. Friend the Member for Beckenham and Penge would welcome it if I paid tribute to those awards, which started 10 years ago with only four schools participating. They have now grown, with 20 schools participating. Lastly, closer to home, I am the parent of twins who are 11. My eldest daughter has cerebral palsy and a range of very complex disabilities. Her twin—two minutes younger—is the carer in many respects, because they have that doting twin bond. During covid they were six and their mum was undergoing chemotherapy, so it was a very intense period for my youngest daughter.”
“I hope that with the combined support of teachers, schools, parents and carers, young carers will be able to reach their full educational potential, and I commend the organisations, charities and schools that support young carers throughout their childhood, both inside and outside school. I want to mention two other matters. First, I was lucky recently to attend the Bromley Rotary club’s youth awards in my neighbouring borough, which is in the constituency of my hon. Friend the Member for Beckenham and Penge (Liam Conlon). The awards recognised 36 people from 17 schools for their outstanding contributions to the community.”
“That is equivalent to one day off school every fortnight, and because they are missing school due to their caring responsibilities, it can be difficult for teachers to recognise when a pupil is struggling and to identify the support and help they need. I therefore welcome the work of the Young Carers in Schools programme, run by the Carers Trust and the Children’s Society. The programme helps schools to support young carers by ensuring that they attend and by helping to improve their wellbeing. More importantly, the programme provides schools and teachers with a comprehensive guide to identifying young carers. As a result of the programme, 94% of the schools involved said that staff were more likely to know what to do if they identified a young carer, and 94% had a better understanding of the support required by young carers.”
“There is no doubt that pupils’ school experiences, both inside and outside the classroom, are fundamental in shaping their first steps into the workplace. Evidence to the inquiry highlighted how issues with attendance, attainment and experiences in educational settings have a distinct effect on the likelihood of young carers pursuing or continuing their studies beyond 18, as my hon. Friend the Member for Harlow mentioned. It also affects young carers’ and young adult carers’ ability to enter and remain in employment, as well as their experiences in the workplace. The recent report “Caring and classes: the education gap for young carers”, published by the Carers Trust, found that almost half of young carers at secondary school in England were persistently absent in 2022-23, which means that they missed at least 10% of their education.”
“Again, that is something that I know, very close to home. I pay tribute to the all-party parliamentary group for young carers and young adult carers. Its inquiry in the last Parliament, whose report was published in November 2023, found that young carers are struggling to balance their education with their caring responsibilities. Young carers are at risk of poor attendance, low attainment and more challenging experiences in education settings, such as bullying or social isolation. Young carers told the inquiry that they find it challenging to ask for help with their education at home and do not want to add extra stress to their family members, who are often also undertaking caring responsibilities.”
“It is a pleasure to serve under your chairship, Ms Furniss. I thank my hon. Friend the Member for Harlow (Chris Vince) for raising this important issue. I know it is a passion close to his heart, and he knows it is a passion close to mine too, as a parent of a young carer—I will come to that in due course. Fewer than 1% of pupils are young carers, but it is important to remember that there will be many more we are unaware of who do not receive the support that they desperately need. Too often, the sacrifices and hard work of young carers go unnoticed and unsupported. Many children will be unaware of the burden their peers face as young carers. Many young carers will feel as if their friends are unable to relate to their home life and the extra pressures they experience outside the school gates.”
“The panel system has complications, and it will be of life-and-death importance. We should have been able to ask witnesses whether a system would work, and how, but we have not been able to do that.”
“During oral evidence, we asked witnesses whether and how the High Court judge system would work. Some said that they did not believe that it would. I credit my hon. Friend the Member for Spen Valley for listening to those points, but our problem and predicament now is that we were not able to seek oral evidence on the panel arrangement now before us, and that a large amount of the written evidence had already been submitted beforehand. I will come to this again later, but if we had gone through the normal process of a Government Bill—I accept that this is not a Government Bill—we would not be in this position now. As a group, the 23 of us are now debating these schedules and clauses before Report, but we have not had any oral evidence on what is before us, and I would argue that we have also had a lack of written evidence.”
“As we have heard, the new clauses and amendments would replace the High Court judge mechanism in the original draft of the Bill with a three-person panel. As we said yesterday, that fundamentally changes the Bill from what the House voted for on Second Reading last November. The panel will consist of a consultant psychiatrist, social worker and legal member who would chair it. I concur with those who have said that it would help if those individuals were involved earlier in the process. Several concerns have been raised about the High Court judge mechanism in the evidence that we have received. Although I accept that the new panel mechanism would address some of those, it would also leave some untouched and in some cases it could make the position worse.”
“It seeks clarification on the nature of the functions to be exercised by the commissioner and by panels. It still seeks clarity on how panels will deal with cases and asks us to consider where lawyers may need to play a role and the availability of legal aid. We touched on that matter this morning. I accept that the Law Society’s position was used in evidence on the other side of the argument yesterday and that it is neutral, but I could have read all four pages of its response if I had really wanted. That is its position. I will oppose some of the new clauses and raise concerns about others, including some of the amendments to new clauses tabled by my hon. Friend the Member for Spen Valley.”
“It is a pleasure to serve under your chairship, Sir Roger. I will be speaking to new clauses 14 to 17 and 21, new schedules 1 and 2, and amendments 371 to 373, 377, 378, 381, 388, 390 and 391—although I assure you I will not speak for as long as the hon. Member for Reigate did. Yesterday, my hon. Friend the Member for Spen Valley referred to the Law Society’s neutral position on the new clauses and new schedules. I will not read out all four pages of its most recent submission on the matter, but, although it is neutral, it does continue to have concerns and queries about the new provisions. I will just read out the headlines. The Law Society remains concerned about the role of the review, whether it would be accessible and workable for people seeking assistance, and the resourcing required.”
“Yes, I am aware of some of those submissions from those individuals. I will come to this, but clearly even some people who were in support of making changes did not recommend the ones that we have now incorporated. First, I would argue that people giving evidence to the panels should be doing so under oath. In my 20 long years as a local councillor, I gave evidence under oath to an investigation by a health and safety executive into the demolition of a building. I would say that the demolition of a building and this matter are very different, and therefore I query why this evidence is not being given under oath.”
“I accept what my hon. Friend says, but there are differences of opinion. I accept that that is a very serious matter, but I would argue that a matter of life and death is more serious, and there are processes that we know. As I said, I gave evidence under oath about the demolition of a building and whether someone had followed the correct health and safety regulations, yet we would not be doing so in this case.”
“In the oral evidence we received we heard concerns from Sir Nicholas Mostyn and Alex Ruck Keene that both sides should have the right of appeal. We heard that from a legal background, from supporters—I hear that Alex Ruck Keene was referred to as an objector, but I think he would say he is neutral in the process. People who have differing views about the process said to us in their oral evidence that both sides should have the right to appeal.”
“The commissioner can then either uphold the decision or allow the person to have an assisted death. We have discussed what happens if a person who knows that that person applying for assisted death has grounds for concern about the case. We have discussed the legal means of people wishing to seek a judicial review, which causes me grave concern. Under the Bill as written, the person known to the person seeking assisted death cannot appeal against a decision. I heard the debate this morning on the amendments tabled by the hon. Member for Reigate. The Bill says that the panel can choose to hear from any person who has a relevant connection, but there appears to be no mechanism for someone to apply to register any concerns with the panel.”
“That is what, in my mind, the Mental Capacity Act states: that if someone requires help to make that decision, individuals with the power should help them to do so. There are wide differences in how professionals talk to, listen to and interpret people with learning disabilities. I know that first hand, on a day-to-day basis. The Bill should set out best practice in this field from the start, so that we do not see discrepancies between how panels undertake their work with learning disabilities. I do not think I need to spell out how a bad decision in this field could lead someone choosing assisted death to a place where others may not want to take them. The fifth area relates to appeals, and that they can only go one way. A person whose application for assisted death is rejected can appeal to the voluntary assisted dying commissioner.”
“There are differing views on the Committee about subsection 5(2), which talks about a “majority vote”, and how that may align with subsection 5(3). My fourth concern is that there is no provision made in the new schedule or amendments for how the panels will deal with people with learning disabilities. There may be a further amendment to come on that matter. I accept that we agreed to an amendment regarding training for individuals, but I have concerns about how learning disabilities could be judged by the panel. I referred yesterday to how people with learning disabilities could go through this process with no support from friends and family, and then be presented before a panel. Under the Mental Capacity Act 2005 and its code of practice, would the panel have to assist the person in making a decision?”
“Although I can see the problems with creating an adversarial system for the panel, there are systems in other countries where that is allowed, and a different appeal system also exists elsewhere. On the third point, which is about the standard of proof, if the panel finds matters that worries it, but does not find actual evidence of coercion, then it is not clear to me what it does. The panel could find that a patient qualifies for assisted dying on the balance of probabilities, and then approve that request. Three members of the panel could decide that a patient is, on the balance of probabilities, free to make the decision. People have heard my concerns about capacity, and whether the process for determining that is correct. We talked yesterday about how decisions are made in new schedule 2, and particularly subsection 5.”
“They must read the two doctors’ statements and the applicant’s declaration, and then they can decide to ask questions of the applicant and/or one or both of the doctors. The panel can also hear from and ask questions of any other person. How is the panel going to know which people to talk to? Will the panel be asking the right questions of applicants? Applicants will have different circumstances in different cases. Will those professionals also be skilled investigators? I accept the evidence we had on the skills those people have and bring, but it is not clear to me whether they will be acting in a quasi-judicial way. We have heard that it will not be an adversarial system.”
“Indeed, these are complex matters and these comparisons are made. We have heard a lot about Spain, which I will briefly refer to later, but Spain has a very different legal process from us. Returning to my comments, currently an individual would not have to give evidence under oath. As I said, the matters discussed by a panel are as important as they can be. In my opinion, people should be giving evidence to the same standards that they do so in a civil or criminal court. My second concern relates to the procedures for investigating any doubts that the panels may have, and we have heard about that. The panel must hear from at least one doctor and from the applicant under this new set of proposals.”
“I thank my hon. Friend for that statistic, which I was not aware of. It relates back to concerns that I have had through the process, particularly on learning disabilities and how a family member finds out during the process what processes would be open to them. In my opinion, it is unclear how the proposed panel fits into our legal system. Again, there are all kinds of quasi-judicial panels that do fit into our legal system, and they have an appeal process, of course. They would normally see two parties in a case. I hear what has been said this morning about Spain. It was put to us in oral evidence from a supporter of the Bill that we should look at that part of the Spanish model about having both sides of the process, although I accept that Spain has a very different legal system from the United Kingdom.”
“I hear what was said about JR, but there is no way, as is laid out in the Bill, that they can then intervene in the process and say, “There has been a mental capacity assessment, but we think that, given there is a borderline level of capacity, there may have been a position where a doctor has had to, under the Act, assist that decision to be made.” What would be the legal process for the parents in that case? These are the scenarios. As Members know, I am not somebody who opposes the principles of the legislation, but these are the scenarios that have brought me to this place.”
“I hear that. As my hon. Friend knows, yesterday when there was an amendment on individual autonomy, I voted the same way that she did. But I will put the scenarios that I put in that debate yesterday when I came to my decision. The scenario that I have always considered is: what if the person with a learning disability in their 40s or 50s says, “I want to make the decision to relieve the burden on my parent in their 70s or 80s”, and the parent in their 70s or 80s is not involved in the process, but finds out about the process and there is no way they can intervene in the process?”
“I hear that. As my hon. Friend knows, I supported amendment 6, as she did, and other amendments that strengthen the Bill in that way. I accept the right to autonomy. The hon. Member for Harrogate and Knaresborough gave the example of an appeal in Spain, but I do not think the fact that a religious group was funding the appeal in one case is an excuse for taking that right away, because there will be other people in Spain who have genuine concerns and want to go through the appeal process.”
“I think that is the case. As the hon. Member said yesterday, people from those professional fields—in their written evidence, particularly—asked to be included in the process, but I do not think they were asking to be included at the end of the process; I think they were asking to be included earlier.”
“We would also have benefited from the normal consultation that there would have been on a Government Bill, because we would have been looking at that matter for several months. In summary, I accept that this set of new clauses and amendments is an effort to fix problems with the Bill, but problems remain, and there are probably some new ones as well. I will therefore not support a number of the provisions.”
“We hear about the resourcing of our NHS mental health services and the fact that we do not have enough psychiatrists, so I query whether we have enough senior social workers. A senior social worker visits my house every year, but I have never seen the same social worker twice, because of the turnover issues, capacity issues and the lack of staff. What will the Government do to ensure that the panels fulfil their responsibilities? We would be dealing with applicants who have very little time left, and being able to properly staff the panels must be a priority. We must not take psychiatrists and social workers away from their other work, while ensuring that people seeking an assisted death do not wait a long time. That is another matter on which we would have benefited from oral evidence from expert witnesses.”
“If we look at the per capita rates in the Australian and American states that have assisted dying, we can estimate that the number of cases of assisted dying each year in England and Wales would be in the low thousands. Any consultant psychiatrist or senior social worker who sits on these panels will have to spend hours on each case. We do not yet know how many hours it would be on average, but for complicated cases, it could be many hours. What analysis has been undertaken of the capacity of consultant psychiatrists and senior social workers? Their professional bodies are beginning to look at that, but again, we were not able to ask them that during oral evidence, and because the written evidence was submitted so heavily in advance of these amendments and new clauses being tabled, we do not have that information in front of us.”
“I hear what the hon. Member says. My concern has always been the scenario that I described. If this legislation is passed and we push it forward, one death that occurs where somebody has concerns about the process would be one too many. I said that clearly when we debated clause 3, and that remains my principal concern. It is not necessarily about two sides, but in cases where there are concerns, we need to do everything we can to ensure that that does not happen. I have a query about the resourcing of the panel. Part of the reason why we ended up here was the queries about the resourcing of the judicial role in the process. We would need to find skilled professionals, especially consultant psychiatrists and social workers, to sit on the panel.”
“On that point, in our oral evidence we were not able to hear from witnesses about the changes to the clauses, because we did not understand what the repercussions would be at this stage.”
“I was once on a planning committee in which one member of the committee voted in favour and all the other members abstained, so the recommendation went through one to zero. Technically, given the way in which new schedule 2 reads to me, that could happen, because one member could vote in favour and two could abstain, and that would therefore be considered unanimous. Will the Minister comment on that?”
“The person who has been helped to make that decision may have decided, because they are a burden on their elderly parents, that they will not inform them. Again, that was the rationale of where I got to on Second Reading, frankly. I see people with elderly parents, often now in their 70s or 80s, who have cared for that person throughout their life. As the Bill and the Mental Capacity Act are laid out, that person could go to the doctor to say, “I do not want my parents to know. I hear what you say, doctor, but under this provision of the Act”—clause 9 of the Bill—“I am not going to tell them.” Under the Mental Capacity Act, if the doctor had any queries about the capacity of that person to make those decisions, that doctor would have to assist them in making them.”
“I am torn by this amendment. I absolutely accept that it is the right, the autonomy, of an individual to make the decisions and to have confidentiality when making those decisions, but I will touch on a few things that I have said previously. First, briefly, I hear what the hon. Member for East Wiltshire said about coercion. Secondly, however, there are two other aspects. Let me go back to something I have talked long and hard about, which is learning disability. One amendment has been accepted and I hope more are to come, but given what my hon. Friend the Member for Stroud said, in that scenario, someone might have to be helped by the doctor to make the decision, because of their level of capacity. When I have made the argument throughout our debates, that has never ever been doubted.”
“That is what I have wrestled with. That conversation will happen, and at the end of it, I accept that the autonomy is with the individual, who may well make a decision that they believe is for the best but with which their loved one does not necessarily agree. I think there are examples from overseas of that having happened.”
“I am not entirely persuaded. I think there is currently a mixture of cases, and there will potentially be a mixture of cases in future. I hear what the right hon. Member says, but my primary concern is about the way things are. As I say, I am minded not to support the amendments on balance, but I am concerned that we could end up hearing stories about someone’s loved one of 50 years, or their child with a learning disability, having had an assisted death—and the first they knew about it was when it was too late.”
“It would also require them to hear from the person seeking assistance to end their life and both assessing doctors, and to consider also hearing from family members and others involved in the person ’ s care.”
“I beg to move amendment 105, in clause 12, page 8, line 15, leave out subsections (4) and (5) and insert— “(4A) Rules of Court must secure that in relation to an application under subsection (1), the High Court must— (a) prescribe a procedure which in relation to each application appoints a person (the Official Solicitor in cases in brought in England and Wales) to act as advocate to the Court, (b) hear from and question, in person— (i) the person who made the application for the declaration, (ii) the coordinating doctor, (iii) the independent doctor, and (c) consider hearing from and questioning, in person— (i) persons properly interested in the welfare of the person who made the application for the declaration and other persons they are close to, and (ii) any other person who has provided treatment or care for the person being assessed in relation to that person’s terminal illness.” This amendment would require court rules to be made that would ensure an adversarial court process, by appointing an advocate to the court.”
“I will withdraw amendment 105 later, but will speak to it briefly, as my name is on it. The amendment aims to require court rules to be made that would ensure an adversarial court process, by appointing an advocate to the court. It would also require them to hear from the person seeking assistance to end their life and both assessing doctors, and to consider also hearing from family members and others involved in the person’s care. In our oral evidence sessions, we heard from Nicholas Mostyn and Alex Ruck Keene about some of the merits of doing so, with reference to the Bill that was before us at that stage. Since then, a significant number of amendments and new clauses have been tabled, so I will not press this amendment to a vote, given the other amendments now before the Committee.”
“I beg to ask leave to withdraw the amendment. Amendment, by leave , withdrawn. Amendment proposed: 410, in clause 12, page 8, line 27, leave out subsection (6). —(Juliet Campbell.) The amendment would remove the ability of the court to hear from and question any person other than the person who made the application for the declaration and the assessing doctors. Question put, That the amendment be made.”
“My hon. Friend is about to refer to Spain, as am I. Article 10 of the relevant Spanish law gives a right of appeal on a point of law to a higher court. Does he believe that we will be in line with the position in Spain? How long does he envision judicial review taking, given that we are dealing with somebody who is at the end of their life?”