Juliet Campbell
MP for Broxtowe · Labour · United Kingdom
“It is a pleasure to serve under your chairship, Sir Alec. I thank my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) for securing the debate and for all his work in championing the rights of disabled people . He is tireless in what he does.”
“No child should be excluded from public spaces because there is nowhere suitable for them to change when necessary; no parent should have to choose between taking their child out and preserving their dignity; and no adult should be prevented from participating in social activities because the basic infrastructure that they require is abse…”
“According to the Office for National Statistics, there are 10,000 disabled people in my constituency of Broxtowe who require a Changing Places facility, but there are only two such facilities there, meaning that people in Eastwood, Awsworth, Stapleford and Beeston do not have access to suitable provision.”
“The reality is that there are still large gaps in provision across the country, particularly in our transport corridors, town centres, tourist destinations and rural communities.”
“Many require a Changing Places facility equipped with a hoist, an adult-sized changing bench and adequate space for carers to provide sufficient support safely and with dignity.”
“Isolation, loneliness and poor mental health are often attributed to low social interaction, which can lead to anxiety and depression—that is what such facilities being missing can mean for disabled people.”
The complete record
Every one of 160 lines we hold for Juliet Campbell, in date order, each linked to its source. Free to read, in full, without an account. Page 3 of 4.
“I am very concerned that biases, both conscious and unconscious, have the potential to significantly impact the treatment pathways offered to people, particularly those who fall under the nine protected characteristics of the Equality Act 2010. Medical practitioners have the potential to influence the treatment pathways offered to people, particularly those from those backgrounds, and I therefore see no reason why assisted dying would be offered as a treatment pathway. I was thinking of the following example. Under maternity services, we also have abortion services. If someone presented themselves to a doctor and said that they were in the early stages of pregnancy, they would not be offered abortion as an option; they would be asked, “Do you want to have your baby at home or at a hospital?”
“Amendment 124 would prevent a registered medical practitioner from discussing the provision of assistance under the Bill unless it is first raised by the person themselves. This is very similar to another discussion we have had. The reason for my amendment is that the doctor will be suggesting, offering or endorsing assisted dying as a treatment pathway—and that would be new—and the patient may take that as a recommendation or endorsement, which could impede their freedom to autonomously choose assisted death. Another reason I tabled the amendment is that the Bill risks exacerbating the existing pervasive health inequalities.”
“I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.”
“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.”
“Not only does the use of the word “inevitable” risk embedding dishonesty in our law, but it risks doctors who agree to engage in assisted dying and end of life care becoming overburdened with the responsibility of proclaiming an individual’s prognosis. Having considered the circumstances that surround a person’s illness, a doctor can only give a prognosis that is typical and give a typical indication of their life expectancy.”
“In her written evidence, Dr Ariel Dempsey, who is currently studying end of life care, says: “Physician prognostic estimates are variable, optimistic/pessimistic, uncertain, and more often than not, inaccurate. For example, a prognosis of 6 months is required for hospice eligibility in the U.S., yet it is not uncommon for hospice patients to live beyond six months, even without life-prolonging treatment.” For individuals seeking assisted death, the use of the word “inevitably” can lead to an over-reliance and overconfidence in the judgment of their doctors. If someone believes without question that they will inevitably die within six months, an assisted death may seem like an obvious and minimally life-limiting choice. The problem is that a claim that someone’s death is imminent and inevitable within six months simply may not be true.”
“The term “typically” better acknowledges the limitations of the knowledge of medical practitioners. In written evidence, Dr Chris Paxton, a retired GP of 38 years, says: “No doctor can accurately predict if a terminally ill patient has six months or more to live. I have seen many patients being told they have only months to live, continuing living many years after their ‘terminal’ diagnosis.” The concept of a condition being “typically” terminal acknowledges that although a disease usually leads to death, there may be exceptions where individuals survive longer than expected, or even achieve remission. The process of assisted dying must maintain honesty and transparency with patients who are seeking assisted death. A declaration of certainty is implied by using the word “inevitably”.”
“The truth, as is repeatedly corroborated in the written evidence, is that in many cases we simply cannot reasonably know how long a person could survive. Witnesses have explained that predicting whether someone is inevitably terminal is often not a certainty. Even when a disease is considered advanced or at the end stage, there are variables—such as an individual’s response to a treatment, access to care, new clinical trials, medical intervention, or a person’s overall resistance —that can influence the outcome. When practising medicine, doctors often use terms like prognosis, life expectancy, or expectation, rather than definitive statements on the degree of someone’s terminal prognosis. The variables in prognosis make the amendment necessary.”
“The amendment would change 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. The limits of medicine, and where they manifest in our healthcare system, have been repeatedly discussed and have come up in oral and written evidence. The Bill’s supporters have frequently used the argument that our current medical care is limited to highlight the benefits of assisted dying, by stating that even with the best care available, not everyone can be prevented from experiencing significant suffering as their life comes to an end. However, such an understanding of the limits of medicine is not consistently applied in the Bill.”
“I have almost finished, so I will carry on. If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.”
“I beg to ask leave to withdraw the amendment. Amendment, by leave, withdrawn. Amendment proposed : 9, in clause 2, page 1, line 24, after “reversed” insert “or the progress controlled or substantially slowed”.— (Rebecca Paul.) This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness. Question put, That the amendment be made.”
“We are asking for something much more nuanced, and for other words to be added, just as the word “dishonesty” appears in clause 26.”
“I have a question for the promoter of the Bill, my hon. Friend the Member for Spen Valley. We are having a lengthy conversation about coercion and pressure, and whether those two words are a catch-all for things that can be much more subtle and nuanced. That is the point of the amendment, and it is the point that I will make when I speak to the amendment I have tabled. Clause 26 suddenly introduces new language, with the word “dishonesty”, which brings in another type of coercion and pressure. Could we rethink the wording of clause 1(2)(b), which refers to a person who “has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured”? The words “coerced” and “pressured” are insufficient to cover the safeguards that we are asking for. They are not a catch-all.”
“I rise to speak to amendments 113 to 115 and 118 to 121, which would require steps to be taken to establish that a person seeking assistance has not been manipulated by another person. The amendments would require the co-ordinating doctor to ascertain whether, in their opinion, the person has been manipulated, and would account for additional ways that a person can be influenced by another person into choosing an assisted death. Pressure and coercion may leave an individual feeling that they have no choice but to take that path; however, manipulation can make the person think that they made the choice themselves. Coercion is an overt and clear means of controlling someone, whereas manipulation is a hidden, psychological and deceptive means of control.”
“To reply to my hon. Friend the Member for Stroud, I understand that the writers, promoter and sponsors of the Bill want it to be as simple as possible. The thought is that if we make it as simple as possible, there is less room for confusion and misinterpretation, but there are times when we can make things so simple that we allow far too much interpretation. Words such as those that the hon. Member for Reigate wants to be put into the Bill are really important. Manipulation is really important. Coercion and pressure are not measures of every type of controlling behaviour that happens to individuals.”
“I thank my hon. Friend for looking that up so swiftly. I still think that those additional words need to be included in the Bill. “Coercion” and “pressure” are used as a catch-all for manipulation, but the Bill does not allow people who are using it in their everyday life—doctors, clinicians, nurses and social workers—to understand that.”
“I absolutely agree that we do not want people not to understand what the Bill allows them to do or not do. We spoke earlier about making the Bill simple enough for professionals to understand so that they know how to deal with particular instances, but it is not here to make life easy for professionals; it is here to ensure that anyone who is vulnerable—anyone who has six months to live, or for whatever other reason—is protected. A continuous theme of our debates and all our conversations is that we must make safeguarding as tight as possible so that people are protected. I believe it is not too much to ask to include those additional words to ensure that the wording is as tight as possible and protects the people who need our protection every single day.”
“The assisted dying Bill in itself is enough reason to have an alternative measure to determine an individual’s eligibility to be considered for assisted dying.”
“To go back to the amendment, we were talking about the Mental Capacity Act. The use of that Act must be drawn into question, because it was never intended as legislation for assisted dying. Much of what has been said in favour of using the MCA relates to it being tried and tested, and people understanding it, and the idea that to use anything else would make life complicated for professionals who use it as part of their day-to-day activities when assessing capacity. On the surface, those reasons seem reasonable, and it is an easy option. However, if the MCA does not meet the threshold of meeting the needs of everyone, convenience should not be the deciding factor. Convenience cannot be considered as a sufficient reason to use the MCA as a fundamental element of the Bill.”
“The Bill is in itself enough reason to have an alternative or stand-alone approach to determine an individual’s eligibility to be considered for an assisted death. Capacity is a complicated issue and cannot be oversimplified for convenience. The MCA may be fit for its current purpose, but it is not fit for the purpose of the assisted dying Bill. I have spent more than 20 years working on the equalities agenda, and one of the things that I have learned—this has been a consistent shortfall—is that we try to address new challenges with old solutions, rather than trying to meet the needs of the people we intend to serve. That is the reason why I will be supporting the amendment.”
“I thank the Committee for allowing me to reiterate the importance of a stand-alone approach. The use of the Mental Capacity Act must be questioned, as the Act was never intended to legislate for assisted dying. Much of what has been said in favour of using the Mental Capacity Act has been about it being tried and tested, so people understand it and to use anything else would make life complicated for professionals who use it as part of their day-to-day activities in assessing capacity. On the surface, those reasons do seem reasonable and make the Mental Capacity Act an easy option. If, however, the Act does not pass the threshold of meeting everyone’s needs, convenience should not be the deciding factor. Convenience cannot be considered a sufficient reason to use the Mental Capacity Act, as it is a fundamental element of the Bill.”
“I beg to move amendment 109, in clause 1, page 1, line 17, after first “and” insert “demonstrably”. This amendment reflects the changes in Amendments 110 to 112 that change the requirement from having to establish that a person who wishes to end their own life under the Act has clear, settled and informed wish, to a clear, settled and demonstrably informed wish.”
“The amendment would strengthen the Bill by establishing a benchmark for the level of understanding of assisted dying and its process that the person needs to demonstrate to start the process. That will help to ensure that the person requesting assisted dying understands what they are asking for, so that doctors and other professionals can be assured that those who are engaged in the process have come to their own informed choice. Being informed conceptually is meaningless; it adds nothing to the Bill unless we can establish that the person can demonstrate to healthcare professionals and others that they understand assisted dying and the process.”
“I still think that it is important to add “demonstrably”. The word should be included; I do not see that it would create any additional confusion. The right hon. Member for North West Hampshire said that he had tabled some amendments later on in the Bill. However, that is later on. Putting in “demonstrably” here would strengthen his proposal.”
“I absolutely agree. The word “demonstrably” could produce that weight. It could add to every other part of the Bill that a person must be able to demonstrate to health and social care professionals that they understand what assisted dying is and understand the process that will be gone through. The person needs to be able to demonstrate to other professionals that they understand. A written report by a health or social care professional is not enough; the person themselves will have to demonstrate that they have a full and clear understanding.”
“I will not push it to a vote, Sir Roger. I beg to ask leave to withdraw the amendment. Amendment, by leave, withdrawn. Ordered, That further consideration be now adjourned. — (Bambos Charalambous.)”
“It is not about people making horrible decisions, but they are making assumptions: “Oh, they will have a big family—the family will look after them. This will happen or that will happen.” The nurse consultant, Claude Chidiac, went in and did training for the staff and said, “Don’t assume that just because people come from an Afro-Caribbean family that they have got this big family.” Within a year, when the second wave happened, the difference had gone. It can be at the forefront of training and you can make people really think about it. I would say—I think someone said it yesterday—that there is almost an inverse inequality, because I think those families and those communities will be really trying to protect people from even thinking about going for it.”
“One of our areas is one of the most deprived coastal communities in the country, and yet it had equal access for people across all areas of society, because they brought in people to target anyone from those socially deprived areas. Equally, at the beginning of the first wave of the pandemic, at one of the big London hospitals, we analysed the data because we were concerned about access to palliative care services. Were people accessing it during the pandemic? We also looked by ethnicity. What we found was that not only during the pandemic, but pre-pandemic, if you were non-white, it took—I don’t know—three or five days longer to get that referral. We had an idea that from some of the research we had done on social deprivation, people are making assumptions.”
“Q My question is to Professor Preston. I will go back to something you said in your last answer, when we talked about how people are treated, and the differences and inequalities across society but also within our healthcare systems and how things are done. This was highlighted specifically during the pandemic. How do you think these inequalities will undermine the principles of the Bill? Professor Preston : I think it is about having that additional consideration. When additional consideration for, perhaps, social deprivation or about people from minority groups is in the training and is at the forefront of people’s thinking, they can address it. I will give you an example. We did a study looking at access to palliative care. I know you have heard a lot about there being a postcode lottery and things like that.”
“They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.”
“Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion. We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made. Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice.”
“That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed. It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes.”
“As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act. Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live.”
“Q My question is for Professor Shakespeare and Dr Griffiths. Clause 4 of the Bill offers the opportunity for clinicians to instigate the discussion on assisted dying. Could you both tell me your view on that, please? Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious.”
“It is essential that those two things are slightly separated, because it would be heartbreaking to think that pain management was the primary reason that someone wanted to be assisted to die. We should be able to control and support someone’s symptoms and pain. I think the primary thing with regard to being referred to another organisation is autonomy. I absolutely agree with what was said earlier: you would want anyone who is considering assisted dying to be slightly separated out of their normal clinical pathway, so it is not part of mainstream care for someone in a hospital or an organisation. There is something really important about separating that out, both in the discussions around the decision making and in any care involved in assisting them to die. I think those two things do need to be separated.”
“Q Thank you both very much for being here today. Throughout this whole discussion, for many months, there has been a lot of talk about palliative care and pain management, which can lead patients to come to a decision or to consider assisted dying as an option. If a doctor has suggested to a patient that assisted dying is an option, or a patient has said that they are considering assisted dying, do you think that they should be referred to another clinician? Or do you think that there should be an independent organisation—a non-clinical setting—where a patient can go to have further discussions before taking the assisted dying route? Professor Ranger: I think there is something really important about having a big difference in the beginning with regard to palliative care and assisted dying, and pain management.”
“Q So rather than going straight to “I have made this request, or this has been suggested to me, and this is the path we are going down,” there is something that should happen in between. Professor Ranger: Well, you would not really want any clinician to push this view on any patient. It has to come from the person themselves. That is the key thing around capacity and autonomy. I do not think that people should ever say to a patient or an individual, “Is this something you have considered?” It has to be led by the patient.”
“That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society. It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.”
“The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them. Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard.”
“Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society. Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality.”
“Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital. One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting. Increasingly, one of the things we feel is necessary is the provision of support inside hospital.”
“Q I have a question for James Sanderson and one for Dr Clarke. They are quite similar, but I will refer to things you have said. James, you said: “Sadly, only half the people who need palliative care receive it.” In your opinion, who are the people who receive palliative, and who does do not? My question to Dr Clarke is similar. You have talked about the population being “carved up into two groups…those who deserve to live and those are expendable”. Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care? James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access.”
“In addressing welfare and support for families, the shadow Minister has focused on pensions, but what are his thoughts on wider issues such as childcare and education, which we should also be thinking about?”
“If we know there are problems, we should be able to go and shine the light on it for them, so that they do not need to do that.”
“We are doing as much as we can to make sure that that system does not feel onerous, combative or scary, but some people are simply not comfortable putting their name down and saying, “I want to complain about my employer because of this.” This new role has a wider focus on welfare, so you could form really good links with some of the networks to say, “Okay, when people come to you for advice, what are the things they are worried about? What are the things they are scared about? What policies are affecting them?” If those people are still not comfortable raising individual complaints, we need to ask what issues they are facing and whether we can cast a light on them. I want everyone to feel safe to come forward, but equally, if we know there are problems, it should not take the individual coming forward.”
“Q Thank you very much for joining us. In part of your introduction, you spoke about the number of complaints that you receive. Clearly, the number of complaints that you receive is lower than the number of valid complaints that probably should be made. How do you think that this role will encourage people who might not have actively come forward, such as people from LGBT backgrounds and non-UK personnel, and enable them to come forward and make those complaints? Mariette Hughes: I think it will allow people who are experiencing an issue that affects a wider group or a demographic to bring forward that complaint as a whole. There is a lot of onus in service complaints on the resolution of individual grievances. You cannot bring a group complaint; it has to be an individual’s complaint with a named respondent.”
“It is really important that we can fulfil that function, but the thing that went wrong for that individual happened maybe 12 months ago, so we have to see what people are coming to welfare for, what people are coming to the networks for, and what people are using “Speak Out” and the “Call it Out” hub for. When people are saying, “I am seeing certain behaviours and I’m having an issue,” where can we get the sources of data to look into it? It will be really important for the commissioner to try to get ahead of some of those issues. It is really important that, when things go wrong, people can use the formal system, but ideally I would like to stop them going wrong, to be able to look at where the hotspots are and to really focus welfare work on them.”
“Q That leads on to my second question, which is about patterns and trends of complaints and whether this role will enable people to look at them, rather than waiting, as you said, and think, “Oh, I have got to be the person who comes forward.” How would you be able to address any patterns or trends that you see in complaints? Mariette Hughes: I think it is key to look at the front end of complaints. By the time things come to us, they have been all the way through the process, they are still unhappy with it and they are asking us to fix it.”
“We have seen that the question of what a family is has changed. For me, a family is the most important unit of society, but what and how it is will be different for every different family. We are trying to find the right definition. I imagine the commissioner will have a view on that, and they can then make recommendations on that basis. That is why there is the option of being able to revise the definition via secondary legislation, which is an easier process than undertaking primary legislation—and the Armed Forces Bill comes round only once every five years.”
“Q A few of the witnesses today have spoken about “relevant family members” and the fact that that has not been defined in the Bill. Why did the Bill not adopt the existing armed forces covenant definition, which may have made it a little easier? Luke Pollard: The Bill itself is not a stand-alone piece of legislation. It might be useful for hon. Members to understand that, effectively, it inserts legislation into the already existing Armed Forces Act 2021, which includes a section—I think it is section 340—that already includes the armed forces covenant. However, we did not want to specify the relevant family member in primary legislation; we wanted to be able to take more time to have conversations with stakeholders and define that through secondary legislation. If the definitions were to change in the future, that could change.”