Learning Disabilities: Health and Social Care Access

Lord Bishop of Newcastle Excerpts

Thursday 26th March 2026 Grand Committee

[The Lord Bishop of Newcastle]

My Lords, I am grateful to the noble Lord, Lord Scriven, for bringing forward this Question for Short Debate. I acknowledge his very personal connection to this topic and echo the words of the noble Baroness, Lady Ramsey of Wall Heath, in paying tribute to his powerful opening speech. I also express gratitude to the organisations that have written to me; I am particularly grateful for the extremely helpful briefing document from Mencap.

The topic of our debate has been on my mind since I sat on the Select Committee in your Lordships’ House as part of the Terminally Ill Adults (End of Life) Bill process. Persistent health inequalities for young people—well, for people generally—living with a learning disability and those with Down syndrome were raised on behalf of the National Down Syndrome Policy Group by Ken Ross, who gave evidence to the Select Committee describing

“a systemic direct and indirect bias shown within the health service, which could also be linked to a lack of understanding of the needs, wishes, health, learning and communication profiles of this particular group”.

The LeDeR report and others highlight that the rate of preventable deaths among those with learning disabilities is double that of the general population; the noble Lord, Lord Scriven, raised the critical matter of the lack of heft with LeDeR.

If we are going to make a real difference to health inequalities, we must focus on not only care delivery but preventive care such as accessible public health campaigns. The report noted that access to care is often missed for practical reasons such as a lack of accessible transport links, which, again, will only be compounded for rural communities. Preventive care that includes the practical must continue to be prioritised by ICBs in their strategies to reduce health inequalities.

As the Covid inquiry has continued, we have seen in close detail the impact of inappropriate application of DNACPRs, sometimes on those with learning disabilities. Fear and distrust of the health service for disabled people remains. In some places, that is worsened by geography. There are additional challenges of accessing care if living rurally—a particular feature of the area where I serve as Bishop, which includes Northumberland. This is about accessing the right care at the right time and with the appropriate reasonable adjustments in place.

On the availability of reasonable adjustments, the most recent LeDeR highlights that the involvement of a learning disability liaison nurse in someone’s interaction with the healthcare service is correlated with a higher likelihood of reasonable adjustments to care. It also says that access to learning disability liaison nurses is not straightforward in all parts of the country and they are less commonly available in the north-east.

We are living in an uncertain health and care landscape, and in the midst of significant reforms to the healthcare service and impending significant reforms to adult social care services. ICBs were asked to make 50% cuts to their running costs last year and, to meet this, many have made arrangements to merge and expand their geographical footprint. None of these agreements, to my knowledge, has been made in the north-east, but those ICBs will still have been required to make cuts. What then will the impact be of ICB cuts on the important measures to ensure patients have access to the reasonable adjustments they need? What support is being provided to ICBs to ensure that essential services like this are protected from cuts?

As we await the outcome of the Casey commission on adult social care, which promises significant reform, we know the huge pressure facing council budgets. Services such as Shared Lives, run by councils, are extremely beneficial, especially for those living with a learning disability. According to a survey carried out by the Association of Directors of Adult Social Services, 87% of its membership think that

“greater availability of Shared Lives would reduce or significantly reduce adult social care expenditure”.

Although this debate is not about the provision of social care per se, if care and support are the means by which we are all enabled to flourish, they are part of the discussion about ensuring reasonable adjustments to healthcare and good decision-making for patients.

In conclusion, overall, the problems are systemic, requiring stronger leadership, better designed services, collaborative thinking, improved training and consistent, proactive approaches to ensure equitable access to care.

Terminally Ill Adults (End of Life) Bill

Lord Bishop of Newcastle Excerpts

Committee stage
Friday 20th March 2026 Lords Chamber

[The Lord Bishop of Newcastle]

My Lords, I am grateful to my right reverend friend the Bishop of Southwark for preparing the way for some of the comments that I wish to make briefly now. Broadly, this group seeks to address issues around communication, language barriers and interpreters and I support the amendments laid before your Lordships’ House in that regard.

Amendments 171A and 174A in the name of the noble Baroness, Lady Nicholson, would require the provision of an advocate for women who might have additional vulnerability to coercion, especially due to cultural and religious factors. It is a very interesting and significant idea, which highlights the complex factors at play in considering certain groups of people. It is often those who are subject to health inequalities who hold the most distrust towards the health service, and understandably so since we are still in the shadow, even now, of the pandemic.

The noble Baroness, Lady Berridge, has already raised the evidence given by Dr Jamilla Hussain earlier in the passage of this Bill. Dr Hussain warned us about failing to recognise this issue of inequality. She said that

“introducing this Bill without addressing structural inequities and mistrust will likely result in widening disparities, poorer end-of-life experiences for already disadvantaged groups and potentially inappropriate deaths”.

The provision for raising assisted dying with people, as currently in the Bill, could be highly damaging to the already strained trust in the health service.

Secondly, and briefly, I make a general point about issues of communication, language and interpreters. Again, Dr Jamilla Hussain talked about the challenges of having end-of-life conversations. She said that these are nuanced, sensitive conversations, and understanding is not always straightforward. I know myself how, when I worked and lived in New Zealand, I had to work very hard to communicate in another language, te reo Māori, but also to convey my words and my thoughts into that language and that cultural context. This Bill assumes a sense of clear, individual and fully informed choice. However, when it comes to communication, language barriers and interpretation, this is so often mediated, culturally shaped and indirect. It seems that we are left with a very difficult decision about whether we are prepared to live with the degrees of uncertainty that this then gives us, or whether we are going to somehow restrict access to any assisted dying service. I expect that neither of these is satisfactory. I support these amendments and urge your Lordships to consider them.

[Baroness O'Loan (CB)]

My Lords, I have put my name to Amendments 171, 171A, 173, 174 and 174A in this group. The group deals with obligations placed on a registered medical practitioner conducting a preliminary discussion to ensure that it will be possible for the patient to communicate well with the doctor, to hear and understand what is being said, to respond and, in so doing, to be understood. The Bill provides for adjustments for language and literacy barriers, including the use of interpreters.

In Amendment 171, so articulately presented by the noble Baroness, Lady Nicholson, she rightly seeks to add provision for hearing and visual impairments. By Amendment 171A, the noble Baroness also seeks to ensure that provision is made for cultural, religious and sex-based factors. This covers a wide range of situations, perhaps the simplest of which might be the reluctance of a woman to speak through a male interpreter in a discussion that might include matters of great sensitivity. Similarly, men may be uncomfortable or even distressed by having such conversations with a woman. Religious considerations may also be profoundly important to the person having the discussion. Many religions seek to deter suicide. This has to be taken into account, particularly to ensure that the person understands exactly what they are agreeing to and the consequences of taking whatever lethal drug is prescribed.

By Amendment 174A, the noble Baroness, Lady Nicholson, seeks to introduce an advocate with particular characteristics: having safeguarding experience in relation to cultural and religious issues and being of the same sex as the person contemplating asking for assisted suicide. Those are both profoundly important, as they will facilitate trust in the advocate and hence trust in the process.

Similarly, there are those who use sign language—a matter covered by Amendment 172 in the name of the noble Baroness, Lady Grey-Thompson. Of course, under the British Sign Language Act 2022, which was sponsored by the former MP Rosie Cooper, British Sign Language is now an official language of England, Scotland and Wales. I would mention that Rosie Cooper MP was the child of two profoundly deaf parents. She described to me the last days of her father, who was dying at an advanced age with many complications. The problem was that it was not possible for a sign language interpreter to be there when they needed to talk to him and Rosie was finding that she had to go in so often to try to make sure that her father was safe and understood the discussions and what was being put to him. This is a profoundly important matter. In addition, Amendment 173 would provide for those who are blind or partially sighted being able to use amanuenses or Braille.

It is not appropriate—though it does happen—for children to be used as interpreters when their parents or family members are sick. The noble Baroness, Lady Berridge, has referred to that. As one who dealt with complaints in a northern health trust, I received complaints about children being used at the age of 10 or 11 to discuss their parents’—particularly their mothers’ —intimate medical conditions, something that was entirely inappropriate for children. I suggest that, if it is inappropriate for children to be involved in that kind of discussion, it is equally inappropriate for a child to be involved in the discussion of matters of life and death. Therefore, I support the noble Baroness, Lady Berridge, in her amendment to preclude the use of children as interpreters.

I support all these amendments and those of the noble Baroness, Lady Grey-Thompson. Her Amendments 322 and 322A would require a version of any report to be provided in a person’s preferred language or in an accessible format of their choice. Amendment 406 seeks to assure compliance with that requirement by requiring a record to be kept of the communication affecting any patient.

In a country in which there are almost 1 million people with learning difficulties and in which more than 100 languages are spoken—many of those languages do not contain words that are present in the English language, such as “safeguarding” or even “suicide”, and, in many cultures, there are difficulties in discussing suicide—any discussion about whether a person wants to be prescribed and take lethal drugs that will end their life must be conducted with the utmost rigour, to ensure that those making this final decision are under no pressure and will have a full and complete understanding of what is being proposed and what consequences, including any complications, there may be.

Will the noble and learned Lord, Lord Falconer, now support these amendments to make the requirements cover needs beyond language and literature? Surely that is proportionate to the seriousness of the communications in this Bill. Does the noble and learned Lord accept that his earlier amendment to lessen the duty on doctors to ensure effective communication has increased concern in the House and that these specific amendments are necessary?

The noble and learned Lord’s use of the words “take all reasonable steps”, to which my noble friend Lady Hollins has just referred, implies that there are steps that can be taken to ensure effective communication but are perceived to be too much effort or disproportionate. In discussing whether to take your own life, aided by the state, crystal-clear communication is essential. What must be required is “all necessary steps”, and those steps must explicitly provide for the categories of people referred to in this group.

Terminally Ill Adults (End of Life) Bill

Lord Bishop of Newcastle Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

[Baroness Butler-Sloss (CB)]

My Lords, it is usually necessary to have a rather greater capacity to make a will than to get married, which may perhaps be rather surprising. I am concerned about two groups of people: those with intermittent dementia who from time to time appear to be entirely normal and then the next day cannot remember anything that has happened, and people who are sectioned under mental health legislation.

Some years ago there was a famous case about someone who was sectioned. It was intended, in his best interest, to amputate his leg, but he absolutely refused. He was allowed to have the capacity to make that refusal, and in the end it was not necessary to amputate his leg. Consequently, it is quite tricky to determine whether that group of people who have been sectioned under mental health legislation will be seen to have sufficient capacity under the Mental Capacity Act.

It would be extremely helpful if the noble and learned Lord, Lord Falconer, could provide us, before Report, with what he sees as the changes that might be achieved to give special status. If he does not do that, we will spend a lot of time, all over again, on an issue that probably could be dealt with fairly quickly.

[The Lord Bishop of Newcastle]

My Lords, I will speak to Amendment 108, to which the right reverend Prelate the Bishop of Lincoln has added his name. He regrets that he cannot be in his place today, as he is interested in this amendment as lead bishop for the L’Arche community in the UK. With the Church of England, L’Arche strives to provide a positive and inclusive residential community in which adults with and without learning disabilities can live and grow together.

Health inequalities come into focus for much of the Bill. As we heard in the Select Committee on the Bill, people with learning disabilities experience significant inequalities in health outcomes. The learning disabilities mortality review found that 40% of the deaths of individuals with learning disabilities in 2023 were linked to avoidable, treatable or preventable causes—double that of the general population. As we heard from Ken Ross on behalf of the National Down Syndrome Policy Group, people with Down syndrome are likely to die 27 years earlier than their peers. He highlighted

“a systemic direct and indirect bias shown within the health service, which could also be linked to a lack of understanding of the needs, wishes, health, learning and communication profiles of this particular group”.

That bias is linked to what other people feel a life worth living is like, sometimes pejoratively described as a life without dignity.

We have heard about the high suggestibility of some people with learning disabilities, and the discrimination they face both in and outside the healthcare system. This is closely linked to capacity. It is clear that additional protections are needed for this group, which is why due consideration should be paid to this amendment.

[Viscount Colville of Culross (CB)]

My Lords, I apologise: this is the first time I have spoken on the Bill. I have added my name to Amendment 115 in the name of my noble friend Lady Finlay. My concern is that, as other noble Lords have told the Committee, the Mental Capacity Act has the presumption that, if in doubt, the doctors making the assessment of the patient’s mental capacity have to assume that they have the capacity unless proved otherwise.

As other noble Lords have also said, if the patient is deciding whether to go into a residential home or what to do about their financial affairs, that is fine. But I am convinced that a terminally ill patient should have to prove that they have the mental capacity to make the gravest decision possible: that of ending their own life. I would like their doctors to have to decide that the patient has the mental capacity to make such a huge decision. Amendment 115 sets out a list of tests to help the doctor come to that conclusion.

To find out the importance of the changes to the Bill put forward in Amendment 115, noble Lords have only to look at jurisdictions where the default position is the presumption of mental capacity. Canada has already been raised by the noble Baroness, Lady Berger, with very good reason. In some provinces, such as Quebec, 8% of all deaths are by assisted dying, and on Vancouver Island, which has lamentable palliative care, the percentage rises to 11%. These, in my view, are big numbers.

I am concerned by the Canadian definition of mental capacity, which, as with our own Mental Capacity Act, emphasises that every person is presumed to have mental capacity unless proved otherwise. In the early stages of dementia, this can lead to cases of people being assumed to have mental capacity for assisted dying, or MAID as it is called in Canada, even when they are confused about the implications of the decision.

I have spoken to a number of Canadian doctors and psychiatrists, who gave me worrying examples of this happening. One doctor told me they had a male patient in his mid-70s with prostate cancer who had been diagnosed with mild dementia. He was admitted to hospital for worsening confusion. Medical investigations were undertaken to determine whether this was delirium on top of the dementia or worsening dementia. During the admission, and before the cause of the worsening condition had been determined, he stated that he wanted to be left alone and that he wanted to die, so the MAID team were called.

The MAID team deemed him eligible for the process, but then the palliative care team were also called. The doctor I spoke to was the patient’s consultant on this team. She interviewed the patient and he told her that he wanted hospice care and palliative treatment. She concluded that he could not differentiate between being sent to a hospice for palliative care and having a lethal injection to immediately end his life. But the MAID team still assumed that he had the mental capacity to go ahead with his first decision to have assisted dying. When they asked him subsequently whether he wanted medication to help him to die, he agreed to it. MAID was carried out shortly afterwards.

I would like the Bill to ensure that there is no confusion about whether such terminally ill patients have the capacity needed for this huge decision. I suggest that Amendment 115’s proposed subsections (1) and (2), which would reverse the presumption of mental capacity, would prove a much better safeguard.

I also draw your Lordships’ attention to whether having a doctor raising the option of assisted dying to a terminally ill patient is regarded as treatment, a matter on which the Minister in the other place said the Government were silent. Proposed subsection (6)(g) of Amendment 115 states that

“the self-administration of such a substance is not a medical treatment for their terminal illness but a personal choice concerning life and death”.

I know that amendments to Clause 5, if accepted, would have the same effect, but I argue that it would be a belt and braces to have the concept that the doctor cannot, unprompted, raise the option of assisted dying in the mental capacity clause of the Bill. It is important that the request for assisted dying is initiated by the patient and is not seen as a treatment initiated by the medical team.

Once again, I turn to the experience in Canada, where doctors and healthcare professionals are duty-bound to raise assisted dying as an option for any patient admitted to hospital who suffers from a condition that makes them eligible for MAID. I spoke to the doctor of a Canadian patient who was found to be eligible for MAID and went into hospital. Each medical professional who visited him offered the option of MAID, alongside the option of drugs to alleviate his condition. This meant that on the day of going into hospital, he was offered MAID six times by six different medical professionals. Each medic was aware that if they did not offer the option, because MAID is classed as a medical treatment, they would be sued for negligence. I fear this will put unnecessary pressure on patients.

Obviously, the eligibility for MAID in Canada is very different from that proposed in the Bill, but Canada is still an important lesson for us. In this country, it is imperative that it is left up to the eligible patient to initiate the request for assisted dying. The amendment would ensure that doctors are not forced to initiate the request, which would avoid the patient feeling any pressure to end their own life. I hope that the amendment will be accepted. It would provide safety rails for patients eligible for assisted dying.

Terminally Ill Adults (End of Life) Bill

Lord Bishop of Newcastle Excerpts

Committee stage
Friday 30th January 2026 Lords Chamber

[Baroness Butler-Sloss (CB)]

My Lords, for the reasons given, mainly by the noble Lord, Lord Empey, and despite what the noble Baroness, Lady Gerada, has just said, it seems to me highly desirable that there should be face-to-face contact if such an enormously important decision is being made. I therefore support face-to-face contact at both stages, other than for reasons where it cannot happen.

[The Lord Bishop of Newcastle]

My Lords, taken together, the amendments in this group highlight the importance of contact with people at the hardest time in their lives—a time when we must be most vulnerable, clinically and personally. This must not be a process in which anyone is made to feel rushed or that can be completed entirely online.

If we are content to enable access to a slick service as quickly as possible, an online service may be acceptable, but if we are to continue to take seriously our duties of suicide prevention, of assessing and meeting unmet need and of safeguarding, the human contact of being face to face is part of that.

During the Select Committee sessions, we heard evidence from the chief executives of Mind and Standing Together Against Domestic Abuse, who said that an online or pre-recorded consultation was not an adequate safeguard to assess a person’s emotional state. This must be especially true in complex cases. I remind your Lordships that prisoners are still eligible under the Bill. As we engage with every group, we must consider how the particular issue might play out in a prison context. All the challenges that we are worried about, including the assessment of unmet need and the presence of an undiagnosed mental disorder, are more difficult in a prison environment. So I would be grateful if the noble and learned Lord, Lord Falconer, could outline whether he thinks in-person assessments should be even more important in a prison context.

Drug-related Deaths in England and Wales

Lord Bishop of Newcastle Excerpts

Tuesday 26th November 2024 Lords Chamber

Asked by

[The Lord Bishop of Newcastle]

To ask His Majesty’s Government what assessment they have made of data published by the Office for National Statistics on 23 October indicating that the number of drug-related deaths in England and Wales was higher in 2023 than in any other year since records began in 1993, and what steps they are taking to reduce the number of such deaths.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My Lords, drug-related deaths are tragically at record highs, especially in deprived areas. We are committed to tackling this problem, including by correcting the years of disinvestment in treatment services as highlighted by Dame Carol Black in her independent review. I was glad to lay legislation that widens access to naloxone, a life-saving opioid reversal medication, and this Government will continue to work across health, policing and the wider public services to prevent drug use and address the causes of inequality, including in Newcastle.

[The Lord Bishop of Newcastle]

I thank the Minister for her Answer. The ONS data revealed that the north-east has been the English region with the highest proportion of drug-related deaths for the 11th consecutive year—three times higher than the lowest rate, in London. Can the Minister say a little more about what targeted steps His Majesty’s Government are taking to reduce drug-related deaths, particularly in the north-east?

[Baroness Merron (Lab)]

The right reverend Prelate is absolutely right to highlight the situation in the north- east. I can assure her that funding is allocated on the basis of need, and that includes the rates of drug-related deaths. I hope it was helpful that senior officials from the department recently met with the drug and alcohol service commissioners, the police and crime commissioners and the directors of public health from across the north-east to discuss synthetic drug threats. We will certainly continue to work with local areas, including the north-east, to tackle this very real issue.

NHS: Dentistry Provision

Lord Bishop of Newcastle Excerpts

Monday 25th November 2024 Lords Chamber

[Baroness Merron (Lab)]

As the noble Lord will know, we are very keen to see that the areas that are most underserved—as I know from my own experience in Lincolnshire—are targeted. One of the reasons is the problem of recruiting and retaining dentists, as there is not a dental school to call upon. That point is well understood. We are keen to target the areas that need the most, as well as providing additional urgent dental appointments. Early conversations have also taken place with the Minister for Care, Stephen Kinnock, about reforming the dental contract, which is absolutely key, and that work will continue at pace.

[The Lord Bishop of Newcastle]

My Lords, the Child of the North report, published in September, on the crisis in oral health in children, reported that 20% of children in the north-east have tooth decay in their permanent teeth. What plans do the Government have to implement one of the report’s recommendations—namely, to have a national strategy for children’s oral health, of which the establishment of new dental schools could be a part?

[Baroness Merron (Lab)]

The right reverend Prelate makes a very good point. The fact is that the overall state of our children’s oral health is very poor, including in the north-east, as she rightly identifies. One of the shocking facts is the impact on children’s ability to sleep, eat, play, socialise and even learn. It is also shocking that tooth decay is still the most common reason for hospital admission in children aged five to nine years. We will indeed look at the report, but we do have a strategy, including the introduction of supervised toothbrushing for young children in disadvantaged areas.

NHS: Long-term Sustainability

Lord Bishop of Newcastle Excerpts

Thursday 18th April 2024 Lords Chamber

[The Lord Bishop of Newcastle]

My Lords, I thank the noble Lord, Lord Patel, for securing this debate. It is a pleasure to follow my friend, the noble Baroness, Lady Tyler, and I commend the noble Baroness, Lady Ramsey, on her excellent maiden speech. I welcome this debate’s focus on health and social care and in this regard I pay tribute to the noble Baroness, Lady Warwick, for her speech. Too often, social care is considered in public debates primarily in the context of ensuring that the NHS is not overwhelmed.

This debate’s title is rightly ambitious about social care reform. But given the current state, social care simply needs to be there when people need it, in a comprehensive, timely and affordable way. This was highlighted by the case in Newcastle of Dr Jo Wilson, who had been diagnosed with dementia in 2020. Following her death in January 2023, her husband Bill, who had provided round-the-clock care as a result of inadequate and inconsistent care support, described the care system as “broken”. Many cases, such as those raised by campaigns such as John’s Campaign, founded 10 years ago, are also linked to poor dementia care, particularly access for loved ones to those under care.

The Archbishops’ Commission on Reimagining Care developed a vision for social care, drawing on Christian theology and values. The commission heard the need for a fundamental shift in how social care is thought about, organised and delivered. It proposed a national care covenant, a process initiated by government in dialogue with stakeholders to clarify the responsibilities of everyone: individuals, families and communities, alongside local and national government. What assessment does the Minister make of a covenant as a means of rebalancing social care roles and responsibilities?

Areas prioritised by the Government in recent years are worthy of attention. We need more digitisation of systems and databases. We certainly need more care workers, and an attitude shift around that work’s importance, reflected in pay and conditions, as other noble Lords have mentioned. Indeed, the greatest challenge the sector faces in delivering high-quality care and support nationally is workforce recruitment and retention. The north-east is no exception: in 2022-23, the vacancy rate was 8.7%, with 6,400 vacant posts.

I commend the newly published report by the think-tank Theos, which considers the intersection between love, work and care and offers a different and profoundly helpful lens for valuing care more highly. It says:

“Love is a skill, and … is what makes care possible”.


The lack of a shared sense of why social care matters may contribute to attempts at reform being abandoned. With the health and social care levy scrapped and the cap on costs delayed, there lacks a long-term strategy around funding social care. I worry that neither this debate nor the fundamental debate about the value and purpose of social care are taking place. It can feel as though there is a collective burying of heads and a desire to avoid the next NHS crisis rather than recognising that the success of our health and care systems are fundamentally bound up with one another. Where is the vision? Social care demands our focus, not as an end in itself but as the very means by which we begin to experience life in all its fullness.