(2 years, 9 months ago)
Lords ChamberMy Lords, Amendments 119C and 119D propose a code of practice for professionals involved in the assessment and care of people seeking asylum. Refugees and asylum seekers often have complex health needs influenced by experiences prior to leaving their home country, during transit or after arrival in the UK. Common examples include untreated communicable diseases, accidental injuries, hypothermia, malnutrition, poor maternity care and inadequately treated mental illness. These are made worse by the barriers to assessment and treatment that they face right from their arrival in the UK to the conclusion of the process and beyond. One common risk factor for poor health and well-being among this community is trauma. This may be the very trauma that they are fleeing from, the trauma of the journey or the psychological distress of overcrowding, the lack of privacy and the absence of culturally appropriate community support upon their arrival.
The World Health Organization reports double the rate of depression and anxiety in a humanitarian crisis; that is worth noting. Mental illness can influence the ability of asylum seekers to present their claims in a coherent way. The assessment of credibility is a fundamental aspect of the asylum decision-making process, and the decision-making immigration officer needs information to make their decision but they may be faced with a person with symptoms associated with a mental disorder and the psychological effects of trauma, such as memory loss, an inability to express or even feel emotions or profound guilt and shame at what they have experienced. Such trauma, which disproportionately affects women, may also lead to a reluctance or delay in disclosure that can negatively affect the application, as already highlighted in Amendment 40, moved by the noble Baroness, Lady Lister of Burtersett.
The current government policy, as set out in the guidance on adults at risk in immigration detention, centres on indicators of vulnerability, including persons suffering from a mental health condition or impairment; victims of torture; those who have been a victim of sexual or gender-based violence; those who have been a victim of human trafficking or modern slavery; and those suffering from post-traumatic stress disorder.
Once a person has been identified as having an indicator of risk, the “adults at risk” policy identifies levels of evidence for that risk. The level of evidence is used as a measure of the degree of risk, which is then weighed against a range of immigration factors when making decisions regarding the immigration process, particularly the detention of the person. However, the Royal College of Psychiatrists has raised concerns that people with significant mental illness may have difficulty in being effective self-advocates or may lack a full appreciation of the extent of their own vulnerability. They may lack the mental capacity to make decisions relating to their immigration situation. Many do not have access to a robust assessment process or, if identified as lacking relevant capacity, to a system designed to safeguard them or advocate for them in their best interest.
The Helen Bamber Foundation says that in its experience persons with significant mental illness, as well as those with evidence of past torture, sexual gender-based violence and those with PTSD, are being detained despite their mental-health-related vulnerability. The assessment and identification of mental health problems requires appropriately trained staff in a facilitative environment as well as close multidisciplinary working.
For some, the treatment of mental illness will require specialist trauma-focused therapeutic support. I am told that this is not happening in existing facilities, such as Napier Barracks. It is intended that through these amendments the mental health, mental capacity and physical health of asylum seekers would be assessed and considered properly on arrival and throughout the asylum claim processes, and that the treatment and care of asylum seekers would be sufficient to ensure their health and well-being by standardising and regulating a process that would apply to numerous agencies, public, independent and third sector.
The Secretary of State said in the other place that the Bill will increase the fairness of our system so we can better protect those who are in genuine need of asylum and continue to strengthen our proud record of supporting those in need. The amendments seek to support the Government in achieving just that. I beg to move.
My Lords, my name is on this amendment. The noble Baroness, Lady Hollins, knows whereof she speaks, so I shall not attempt to do more than support her. To me, this is a matter of professional judgment, which she has brought, but also of common sense. What I hope is my common sense has been informed by what I have heard over quite some years, including, very significantly, in the debate that we had last week. It is clear that in the UK—it may in this context be England and Wales—the systems, if they can be called systems, for assessing the health needs of asylum seekers are patchy and often inadequate.
It is also common sense that assessment should start from a solid, informed base, incorporating the best, up-to-date understanding and experience, so a review is important. So is consultation with those who are expert in the field. I support the amendments.
Before the noble Baroness responds, it may be that this amendment could be worded to put more emphasis on the guidance of those who come into contact with asylum seekers, rather than just assessment. Does the Minister accept that this is a very specialised area? Without for a moment being critical of the NHS, I suggest that that specialism needs to be recognised and learning from it made available to those who come into contact with the cohort we are discussing.
My Lords, I cut my speech rather, because of the time, and I feel that maybe I did not manage to explain adequately. These are people with complex health needs. They are not just like any other patient in the NHS. They have had very difficult experiences and have difficult mental health needs. It is difficult for them to try to explain about their trauma to the first interpreter or the first person assessing them that they meet. This is something where it often takes years for people to trust sufficiently to be able to explain the impact on their situation, their circumstances, and their life chances. This is not just having an assessment and a conversation. It is about building a relationship of trust when people have experienced the most terrible circumstances. That is the difficulty.
I will give one quick example. One still very troubled lady, whose asylum claim was successful, described her claim and subsequent requests for ongoing support as “seriously retraumatising”. The paperwork that she received was confusing and negative in tone, with any success hidden somewhere in the small print. She asked, “Why do they do that to me? Why can’t they communicate with me? Why should I struggle so much? I feel like I’ve been through another fight”. This lady feels like giving up, despite the fact that her claim was eventually successful.
These amendments seek to see people treated fairly, compassionately and with more skill and understanding, so that they have the best hope of healing and settling in the UK. I thank noble Lords who have supported these amendments. I hope that the Minister will think again and accept the spirit of what I have proposed; otherwise, I and others will bring these amendments back on Report.
I beg leave to withdraw my amendment.
(3 years, 1 month ago)
Lords ChamberMy Lords, I speak with 40 years’ clinical experience, first in general practice but mostly in psychiatry, and as a past president of the British Medical Association.
Stories matter, but other evidence matters too. Consider valid declarations in Clause 4. My own research, published with Dutch colleagues and my noble friend Lady Finlay, found that autistic people and people with mild learning disabilities were given physician-assisted deaths in the Netherlands, rather than addressing the underlying issues of inequality, loneliness, feeling a burden or inadequate support. That is 38 people in recent years. Doctors were shown to be poor judges of decision-making capacity and their recommendations were seemingly influenced by their own assumptions about quality of life.
Clause 4(6) requires the doctor to be present throughout. In summing up, will my noble friend please specify the doctor’s role if the person has not died within, say, six hours? What if after taking the drugs the patient is in pain, vomiting, having a seizure, or dying slowly over hours or days, with their distressed relatives, expecting a quick and gentle death, pleading with the doctor to “do something”? In Oregon, one person took 104 hours to die after taking lethal drugs; eight people survived their suicide attempt.
It is worth noting that, in the Netherlands in 2019, 96% of physician-assisted deaths were euthanasia. Clinicians prefer this. Partly, it is their own convenience and partly the needs of the service. They had to transition to euthanasia because of complications in 8.9% of physician-assisted suicides. We have been promised that this Bill will not introduce euthanasia. This House needs cast-iron assurances from my noble friend that the plan is not to divert already-stretched palliative care teams to this task.
In 2016, Canada legalised assisted dying for people facing imminent death. Five years later, eligibility includes chronic illness and disability, and will shortly include mental illness. In Canada, assisted death is publicly funded and must be provided, but no similar right exists for palliative care. Canadian doctor Leonie Herx, writing in today’s Telegraph, says
“The impact on palliative medicine has been enormous. Hospices that do not offer assisted death face closure and loss of government funding … Administering death is cheaper and easier than providing good care.”
Hospice UK says that expert end-of-life care is not available to about one in four of the people who could benefit. That was 120,000 people in 2015; no wonder we hear stories of failed care. Frankly, the declaration should require doctors to specify what palliative hospice and psychiatric care was available so that any improvement or decline can be monitored.
What if palliative and hospice care became a right and a reality? It is shameful that a quarter of us currently do not and will not have access to palliative care. No wonder people are afraid. Let us campaign for it. Attitudes would shift again because ours and others’ stories would be stories of good deaths. Actually, most of the dozens of emails I received were unique, moving and positive stories. Please oppose this Bill; it is not safe.
(9 years, 8 months ago)
Lords ChamberMy Lords, I refer to my interests in the register. As a member of the committee I should like to add my thanks to my noble and learned friend Lord Hardie for his chairmanship and to the staff who supported us. The committee’s report hoped to raise the profile of the Mental Capacity Act, to stimulate further discussion and, most importantly, to encourage action.
One of the fundamental problems with the Act, however, is the way that it brings together DoLS with some very important empowering measures. In the Government’s response and a number of other reports—including the Green Paper consultation published last Friday, No Voice Unheard, No Right Ignored, which is about people with learning disabilities, autism and mental health conditions—these two aspects of the Mental Capacity Act confuse everybody. It is difficult to discuss them both in the same debate. For that reason, I welcome the debate on DoLS arranged by my noble friend Lady Finlay for next Monday. I will therefore say no more about DoLS today.
The Government commissioned a Mental Capacity Act directory, which was launched in February by the Social Care Institute for Excellence. It endeavoured to bring together some of the resources relating to the Mental Capacity Act in one place, sorted by different professional groups. However, what about the people most affected by the Mental Capacity Act: the people who lack or have fluctuating capacity? What resources are there for them? I only found one easy-read document suitable for people with limited literacy. There may have been more, but this one was found by navigating a very difficult process of links. The document provided an explanation of their rights under the Act. It was not a resource to facilitate decision-making. The examples given were mainly about very straightforward daily living activities, with very little reference to health-related decisions. Given concerns about the lack of choices for, and the lack of involvement of, families in hospitals such as Winterbourne View, this seems quite extraordinary. As a response to recommendation 12, considering the specific information needs of the different groups affected by the Mental Capacity Act, the directory needs much more work. Surely the people most affected by the Act are vulnerable adults, such as those with learning disabilities. So far, the directory further reinforces an unintended message, I am sure, that the Mental Capacity Act is a professional framework rather than an empowering piece of legislation.
Increased activity around the Act means little until it translates into change for individuals and families on the ground. Charitable organisations continue to hear from families about organisational failures to understand the Act and apply it correctly. The lack of an independent oversight body will allow such inadequacies to be perpetuated. Charities such as the Royal Mencap Society and the Challenging Behaviour Foundation have highlighted that, a year on from the Select Committee’s report, there is little evidence that things have changed from the perspective of individuals and families. Frustratingly, families continue to report being excluded from best interest decisions.
I will illustrate my point with two case studies. The first is the case of Angela. She is the mother of two young adults, both with learning disabilities and autism. She has become so frustrated by being left out of decision-making by professionals from children’s services and adult services that she feels that her only way of ensuring her involvement is by becoming their health and welfare deputy. This requires an application to the Court of Protection for permission, first of all, to ensure that she qualifies. Then she has to submit a full application, including a capacity assessment of her children by a medical professional. A court hearing may be required to make the final decision, and all this takes time. The application incurs a fee of up to £1,000 per child, with an annual subscription of between £35 and £320. There is no guarantee that she will be appointed deputy. Some carers could not afford even to begin this process. She told Mencap:
“I love my children and know them better than anyone else and yet professionals do not always involve me in decisions. This causes me real anxiety, as they have complex health needs and if their needs are not understood and met properly, this could have serious consequences. I have been told that professionals should involve me—that under the Mental Capacity Act they must—but I have no confidence that this will happen unless I am an appointed deputy”.
The second example is about Botton Village. It is an intentional community where, until recently, all residents and co-workers lived alongside each other as equals, sharing a home. It is said that:
“Residents feel needed, valued and respected and it shows”.
The umbrella term used by social services would be “shared lives”. However, the model is under threat, with a division being made between those who are considered carers or staff and those being cared for. It appears that financial decisions are driving change without the inclusion of residents in best interest decisions about the future direction of their lives, with many relatives of people who live there being gravely concerned that this loving and inclusive community will be lost, without their individual voices being listened to.
It appears that, after an inspection, Camphill Village Trust, which owns this community, made the decision to change it from a community or family-based organisation to a commercial/institutional model, which the families have perceived as being to the detriment of the inhabitants of Botton Village. In the words of the Welfare Reform Trust, “When did care become a business?”.
The intentions of the Mental Capacity Act are not to create an additional layer of bureaucracy and regulation that takes away people’s rights; it is supposed to enhance their rights. I draw particular attention to the more than 1 million people in England living with a learning disability. This is nearly double the number living with dementia, and yet we often think about people with learning disabilities as being a very small group. The point is that a learning disability, by its very nature, is not time limited and will be present their whole lives.
It seems to me that a large problem with the failure to implement the Act is an attitudinal one—a paternalistic attitude which has not passed despite the decade since the Act was passed. Most of these people will lack capacity to make certain decisions at some point in their lives, which may well include decisions about seeking healthcare. We know that premature mortality is commonplace and that the attitudes and skills of healthcare staff are often at fault. GPs are a particular focus for embedded training as they are usually at the forefront of health surveillance and of accessing further investigation for their patients. They are also more likely to know the family and more willing to ask their advice, for example on how best to support their relative to understand decisions about them, as well as to understand that they need to inform their patient when they are going to consult other family members.
I am encouraged by the response of the Royal College of General Practitioners to the report on trying to embed the Mental Capacity Act in the curriculum for GPs and in the college’s media communications. It would be very helpful if the Minister could comment on how the Government plan to monitor the progress of organisations such as the RCGP, the GMC and NHS England in achieving some of the goals set out in the committee’s report and in the Government’s response.
I end by reminding noble Lords that capacity affects many aspects of decision-making. With pending elections, it is perhaps particularly pertinent to consider the decision to vote. A survey carried out by Mencap at the beginning of this year of 553 people with a learning disability found that 17% had been turned away from a polling station. Again, one cause is almost certainly attitudinal, and the charity continues to hear accounts of those working within electoral services and, indeed, of candidates themselves making assumptions about people’s capacity to vote.
The Learning Disability Alliance has arranged a citizens’ jury on 2 April this year and invited representatives from each of the major political parties to speak on policy issues that may affect people with learning disabilities in order to enable them and their families to make informed voting choices, recognising that there is nothing that says you have to have any particular capacity to vote.
(10 years, 4 months ago)
Lords ChamberMy Lords, I welcome all discussion that would help us to be less fearful about death and to end the taboo. However, I have to ask your Lordships a question: have your Lordships discussed your end-of-life choices with those closest to you? Today, the key point has been made many times that there is a big difference between choosing to withdraw a futile or life-prolonging treatment—a legitimate everyday occurrence—and taking a prescribed lethal drug.
One of many welcome letters that I have received opposing the Bill was from an oncologist specialising in lung and pancreatic cancer. She says that most of her patients have a prognosis of less than six months and would be directly affected by a change in the law. Over 20 years, she says that she has treated in excess of 10,000 patients, and only one in that time has made persistent requests to be helped to commit suicide. The fact that the law explicitly prevents it enabled her to fully explore the reasoning behind the request. It was due to a poor experience with a family member many decades previously, which had left the patient fearful. She wanted to live, but wanted to be assured that she would be properly cared for at the time of her dying. The oncologist says that the majority of her patients remain in control and have a peaceful death, with family present and nurses nearby, through falling asleep and not waking up—contrast that with a complication rate of 23% for physician-assisted suicide in Holland.
Assisting a peaceful death is not about supporting suicide; there are so many other options. Depression has scarcely been mentioned today but there is evidence of increasing depression and anxiety as death nears for people with cancer. In those who request assistance to die, there is an association with depression and hopelessness. This was borne out in an Oregon study of those who had been prescribed lethal drugs to end their lives despite depression.
We in this House are in a somewhat privileged position. We are accustomed to making lifestyle choices with confidence. We know the law and our rights. In a word, we can look after our own interests. The present law may not give determined and strong-minded people such as ourselves what we want, but it provides protection for those who cannot speak up for themselves—people such as those I worked with as a doctor and psychiatrist.
The noble and learned Lord’s Bill assumes that a doctor can readily assess a patient’s mental state, but most doctors have little or no training or skill in capacity assessment, as was a matter of considerable concern for the post-legislative scrutiny committee for the Mental Capacity Act, which I was a member of. Doctors are also insufficiently familiar with normal death, which is why they strive too hard to keep us alive. Death is seen by many doctors as a failure, and the public are afraid too. However, many of my correspondents affirmed their experience of death and dying as being a precious time. A friend of mine who died of motor neurone disease last year died gently and peacefully, his wife said, when the oxygen was removed—when he was ready. A similar situation was referred to earlier by my noble friend Lady Finlay. This is not an intellectual argument: we need emotionally intelligent people here and, as my noble friend Lady Campbell said so powerfully on the “Today” programme this morning, to start listening to people who are terminally ill, not just to those who think that they will be able to anticipate their own feelings when their time comes.
(10 years, 8 months ago)
Lords ChamberMy Lords, the current policy for prosecutors provides a clear picture of how prosecution decisions are made in this area of the law and what kind of circumstances might influence a decision to prosecute. But it also avoids sending the message that assisting someone to commit suicide is permissible under certain circumstances. Noble Lords will not be surprised if, as a past president of the BMA and the current chair of the BMA Board of Science, I remind the House that the BMA emphasised its opposition to any weakening of the existing prohibition on assisted suicide during consultation on this policy.
One factor listed in the policy for prosecutors as a potential aggravation of the offence is a circumstance whereby assistance with suicide has been provided by a doctor or a nurse to a patient under their care. Some, including the noble Baroness, Lady Jay, have claimed that this factor inhibits discussion between doctor and patient—that doctors are afraid to discuss the subject of assisted suicide with patients who raise it, in case such discussions should be construed as assistance and result in charges being brought against them. This claim is unfounded. The position was made quite clear last year in guidance issued by the General Medical Council, which I quote in full:
“Where patients raise the issue of assisting suicide, or ask for information that might encourage or assist them in ending their lives, doctors should be prepared to listen and to discuss the reasons for the patient’s request but they must not actively encourage or assist the patient as this would be a contravention of the law”.
I will also quote some of the evidence heard by the group chaired by the noble and learned Lord, Lord Falconer, when it examined assisted suicide in 2011.
“We don’t get asked about this very often”,
said a representative of the GMC.
“It’s a subject which actually is a small issue in terms of numbers for our members”,
said the Medical Protection Society.
“I’ve not heard any colleagues mention it to me”,
said a consultant in old-age psychiatry. The group was told even more explicitly by the medical director of a hospice that,
“it’s quite clear that we can have discussions with patients. It’s the act of doing something with the intention of causing death that is illegal”.
These are all statements that concur with my own experience as a doctor and a psychiatrist. This is a criticism of the policy for prosecutors which simply will not fly. Doctors are not afraid to talk to patients about death and dying, and clear professional guidance is available for them, including from the BMA. The policy for prosecutors is carefully balanced. That some have chosen to misread it is regrettable.
(11 years, 9 months ago)
Lords ChamberMy Lords, as an expert by experience of press abuse, I consulted Hacked Off, the charity that has represented many victims of such abuse, and asked its views of the amendment of the noble Lord, Lord Puttnam. There is widespread frustration about the lack of transparency and presumed lack of progress on implementing Lord Justice Leveson’s recommendations. Given this, Hacked Off is extremely grateful for the initiative taken by the noble Lord, Lord Puttnam. However, its advice to me was that, as they stand, the amendments appear a somewhat diluted version of Lord Justice Leveson’s recommendations. The amendments that I and my noble friend tabled are offered in the spirit of trying to be as faithful to Lord Justice Leveson as possible and thus to command wider support.
Many victims fear that a deal is being brokered with the press behind closed doors, one that does not include the independent element that Lord Justice Leveson considered so important. Hacked Off’s advice was that the characteristics of the regulator need to be detailed enough so that implementation of Lord Justice Leveson’s criteria is not fudged. Interestingly, most of the draft Bills already published spell out the criteria in some detail.
The public expect the Leveson report implemented as published. They expect robust arrangements to be put in place. They also expect an independent regulatory board to be set up that that will provide an arbitration service, and that these measures will provide protection for innocent members of the public, both with respect to defamation and intrusion. I hope that noble Lords will support the amendment of the noble Lord, Lord Puttnam, and accept that some further amendment of the detail may be needed.
My Lords, I have only one point to make. The noble Lord, Lord Lester, said that these amendments in effect introduce Leveson by the back door into a Bill dealing with other matters. To my mind, that is an important merit of the Bill because we are unlikely to get Leveson through the front door. I particularly emphasise the point that these amendments are the best chance we have of getting the Leveson proposals implemented in their full integrity. The amendments are about access to justice. They would put in place two fundamental elements of Lord Justice Leveson’s proposals, namely means of legal redress for ordinary people if their rights are breached and a fair and independent system to deal with complaints against the press. I doubt whether those who support these fundamental elements will get another chance, or at least as good a chance as now exists, to have these principles embodied in law. The private Member’s Bill of the noble Lord, Lord Lester, will not afford the same chance, for reasons given by the noble Lord, Lord Fowler. If we fail to take advantage of this opportunity, we will in effect kick Leveson into the long grass. The amendments would make the Defamation Bill relevant to the entire population instead of just to the rich, and it is vital that we support them.
(11 years, 12 months ago)
Lords ChamberI suspect that legal aid would be available. However, this is not the evening to discuss that issue.
My Lords, can the Minister suggest an appropriate and achievable timetable to scrutinise Lord Justice Leveson’s proposals for legislative action? Can he reassure the House that the case for legislation to underpin independent self-regulation will not simply be referred to another committee?
I most sincerely hope not. As I said earlier, all-party talks started, as I understand it, at five o’clock. When I had the pleasure earlier today of sitting in on a meeting between the Prime Minister and the Deputy Prime Minister, they were both clearly determined that this issue would be pressed with all possible urgency. It will not run into the sand or go into the long grass, and the sooner that the press understand that and respond with a sense of urgency and reality, the better.