Clinical Trials and Clinical Research Capability

Caroline Dinenage Excerpts

Thursday 23rd May 2019 Westminster Hall

[The Minister for Care (Caroline Dinenage)]

It is a great pleasure to serve under your chairmanship, Mr Hanson. I start in a similar vein to my colleagues, by thanking my hon. Friend the Member for Bolton West (Chris Green) for securing this really important debate on such a vital issue. I also associate myself with the comments made by the hon. Member for Motherwell and Wishaw (Marion Fellows)—I, too, have absolutely no intention to run the London marathon.

I thank my hon. Friend for taking us on a trip down memory lane back to the early days of our country’s great historical legacy in clinical trials, and back to the days of James Lind. I am particularly grateful to the hon. Gentleman for mentioning Lind, because he is synonymous with my home town of Gosport. After his great initial work on the trials for scurvy, he worked at Haslar Hospital, which was one of Europe’s largest institutions for treatments and a Royal Navy hospital. He continued a lot of his valuable work there between 1758 and 1774. He is well known in our area as one of the great stars of Haslar Hospital, and of whose work we are most proud. Once it was eventually rolled out across the Navy, his work undoubtedly saved lives and prevented immeasurable suffering. It was very interesting to hear about those early trials. I would have been very grateful to have been the one having oranges and lemons every day, and not the one having diluted sulphuric acid —I cannot imagine how that would have turned out.

Let me say from the outset that the Government absolutely recognise the importance of clinical research in this country, including clinical trials. As hon. Members have already said—I thank them for their contributions, too—it is appropriate to have this debate in the same week as Clinical Trials Day. Clearly, access to world-leading clinical trials and research can offer real hope to patients who suffer from conditions with limited treatment options. We are absolutely committed to continuing to offer patients opportunities to access potentially life-saving treatments through clinical research. For many patients, participating in clinical research can be about more than improving their own condition. Patients feel empowered by having the chance to contribute to the search for a cure that might benefit other patients in the future. I pay tribute to such patients, and to all individuals and organisations working in this important field.

This country is a world leader in clinical research. We have a world-class science base and three of the top 10 globally ranked universities. Centres such as Moorfields, Birmingham, the Christie and the Royal Marsden are undertaking vital, world-leading cancer trials and research. UK-based scientists have won more than 80 Nobel prizes in chemistry, physics and medicine. Indeed, 25 of the world’s 100 most-used medicines were developed in the UK, using a public and philanthropic research infrastructure that is, pound for pound, more effective than anywhere else on earth. We have to be very proud of that.

We continue to punch above our weight in many areas, and rank second globally—behind only the United States—in the number of clinical trials delivered. Our regulatory environment is forward-thinking and pragmatic, and it welcomes innovation. Through the National Institute for Health Research, the Government are investing over £1 billion a year to fund research and provide the skills and facilities to enable high-quality research in our health and care system. Through its people, programmes, centres of excellence and systems, the NIHR is the most integrated health research system in the world, designed to transform scientific breakthroughs into life-saving treatments. It is doing just that.

In 2017-18, the NIHR’s early transitional research infrastructure generated more than £231 million of industry research investment, supported over 1,770 industry-collaborative and contract research studies, filed 199 patents and created five spin-out companies. The NIHR Clinical Research Network announced this week that a record 870,000 people took part in network-supported clinical research studies in 2018-19, including over 81,000 in children’s research studies. That is a huge increase from the previous year.

The UK’s life sciences sector contributes almost £74 billion a year and supports close to a quarter of a million jobs across the country. In addition, members of the Association of Medical Research Charities support over one third of all publicly funded medical research in the UK, investing over £1.6 billion in health research in 2016. Our NHS has a track record of being very active in research, with 100% of trusts and 38% of GP surgeries in England delivering some form of clinical research in 2018-19—acting on the commitment in the NHS constitution to conduct and use research to improve the health and care of the population. Clinical research does not benefit only the patients who participate; evidence has shown that NHS trusts that are active in clinical research deliver better overall clinical outcomes.

Strong clinical research unlocks a virtuous circle for patients, the economy and the NHS. Part of the stimulus for the growth of this sector is the Government’s commitment to reach a target of investing 2.4% of GDP in research and development by 2027, and 3% in the long term. That places us in the top quartile of OECD countries, as we heard from my hon. Friend.

The life sciences industrial strategy sets out the vision to build on that and make the UK a top-tier global hub for biomedical and clinical research. The two life sciences sector deals, published in 2017 and 2018, have already transformed a significant part of the strategy into Government policy. They are no lightweight commitment. Taken together, they have leveraged more than £2 billion in private sector investment in the life sciences sector, supported by more than £500 million from the Government. The second sector deal set out the Government’s clear ambition to see faster, more efficient clinical research. NHS England’s long-term plan confirmed that the NHS endorses and will play its full part in delivering the life sciences sector deals, and set out our ambition to see 1 million people registered to participate in health research by 2023-24, and to treble commercial research in the health system over the next 10 years.

The Government are committed to creating the very best environment for clinical trials, both to achieve the ambition set out in the life sciences industrial strategy and to prepare for exiting the EU, about which hon. Members have spoken. The system is coming together to deliver that. The implementation of Health Research Authority approval has streamlined processes and led to improvements in the timelines for clinical trial approvals. It is now possible for efficient clinical trials to be set up in the UK within 100 days from first regulatory application to the first participant recruited.

This week, the NIHR published a policy on clinical trial transparency, about which my hon. Friend the Member for Bolton West asked. The policy aims to improve practice in prospective registration and timely disclosure of results to ensure full transparency of clinical trials funded by the NIHR. It sits within and is consistent with the Health Research Authority’s UK policy framework for health and social care research, and guidance on the publication and dissemination of research findings. The Government’s arm’s length bodies and partners are committed to clinical trials transparency. The Health Research Authority has an active work programme on transparency, and later in the year will launch a consultation to improve it further.

NHS England and the NIHR are implementing their “12 Actions to Support and Apply Research in the NHS”, which sets out a vision for further simplifying and strengthening clinical research within the NHS in England. In the summer, the NIHR clinical research network will launch a competition to establish five purpose-designed centres dedicated to late-phase commercial research within the NHS, launched as part of the second life sciences sector deal. Increasing the NHS’s capacity to deliver research will enable significant growth and will provide more opportunities for patients to benefit from early access to innovation. Our vision is to make the UK home to data-driven research, scientific advances and innovation in healthcare. It is all about improving patient outcomes. To help that, we have committed £37.5 million through the life sciences sector deals to develop up to five digital innovation hubs.

The UK is also leading the way in improving clinical trial designs, undertaking novel and more efficient trial designs that will develop new medicines, diagnostics and medical devices for patients. Although a record 870,000 people took part in the NIHR clinical research network-supported studies in 2018-19, the network is also exploring mechanisms to ensure that all patients are offered the opportunity to participate in research that is relevant to them, whether or not it is delivered by their regular healthcare provider. With that in mind, the NIHR recently launched a new website called “Be Part of Research”, which helps people to find out easily about health research of relevance to them taking place across the UK, not just in their own areas. NHS patients will be able to view opportunities to participate and register their interest in research via the NHS app by 2020.

As part of Brexit negotiations, which a lot of Members mentioned, we are working to ensure that we continue to have the best possible environment in which to support clinical trials. Our overall aim is to ensure that patients in the UK and across the EU continue to be able to access the very best and most innovative medicine. As part of our preparations for leaving the EU, the Government are working across a great number of areas to ensure that the UK has the best possible environment for basic, biomedical, health and life sciences research.

[Chris Green]

Does the Minister understand my concern that, although many people from the life sciences sector are involved in Parliament in one way or another and visit it, and are aware of what Brexit means and the challenges around it, for many people in the sector, which is very international in its nature and supportive of remaining in the EU, information about what the Government are doing and their intentions is not as widespread as it might be? Therefore, the Government need to do more and be more effective in communicating what we are doing on Brexit and why we are doing it.

[Caroline Dinenage]

My hon. Friend is quite right. We must do everything we can to communicate and reassure individuals in the UK and across the rest of the EU about our intentions. We have a strong track record of working together to tackle global challenges, and there are strong links in place between our research and innovation communities. We want to maintain that and build on it as best we can. We want to continue collaborating in areas of shared interest through the ongoing partnerships. We perhaps need to do a better job of communicating that. I hope that today’s debate will help to that end, so I congratulate my hon. Friend again on securing it.

My hon. Friend spoke about access to global talent. Through the NIHR Academy, we are investing in the development and co-ordination of NIHR academic training, career development and research capacity development. Clinical trials training is supported from pre-doctoral training right the way through to senior post-doctoral research through a range of awards as part of the NIHR fellowships programme. More than half of the UK’s research output is the result of international collaboration, and the most pressing global scientific challenges of today require scientists from around the world to work together across borders. The UK Government are absolutely committed to continuing to participate fully in all international scientific endeavours, including through pooling and sharing resources and infrastructure with other countries. Hon. Members have raised concerns about that. We are also making it easier to recruit and retain overseas researchers and scientists. We want to ensure that the new regime works for life sciences companies, and supports the recruitment of skilled and talented people without excessive bureaucracy, which often gets in the way.

In September 2018, the independent Migration Advisory Committee reported on the economic and social impacts of the UK’s exit from the EU and on how the immigration system should be aligned with a modern industrial strategy. That includes removing the number cap on the skilled workers route and removal of the resident market labour test. Hon. Members will know that the White Paper currently retains the £30,000 minimum threshold, but the Government have committed to 12 months of extensive engagement with employers on the future of the immigration system to ensure that it works and to address any concerns that have been raised. The hon. Member for Leicester South (Jonathan Ashworth) mentioned other medical and health staff. He will know that nurses and paramedics are already on the exempted professions list. In the 2019 spring statement, the Chancellor announced that we would be completely exempting PhD-qualified migrants from visa caps.

On accessing EU funding, should Parliament pass the withdrawal agreement, the UK will continue to participate in EU science programmes until the end of 2020 through the withdrawal agreement, and the Government would very much like the option to associate to programmes beyond 2020, including the Horizon Europe programme, which has been mentioned. As a contingency in the event that the withdrawal agreement is not ratified, the Government have guaranteed funding for scientists and innovators who secure awards before EU exit and those who are successful in EU competitions on a third-country basis after exit.

The EU and the UK start from a position of close regulatory alignment. The EU has created a comprehensive scheme for the regulation of clinical trials of medicines through the clinical trials directive and the good clinical practice directive, both of which have been transposed into UK law through the Medicines for Human Use (Clinical Trials) Regulations 2004. The EU is planning to implement new regulations for clinical trials in 2020, as my hon. Friend the Member for Bolton West knows, which will further integrate clinical trial processes and requirements across the EU. Ministers have stated that the Government have committed to align with the EU’s new clinical trials regulation as far as we possibly can without delay when it comes into force in the EU, subject to usual parliamentary approvals.

Our preferred future relationship includes the UK’s involvement in all of the elements of EU regulation that are not in the UK’s gift—namely, the EU common portal and single assessment framework. Of course, that is subject to negotiations, which are ongoing.

Regardless of EU exit, the MHRA and partners across the UK healthcare ecosystem are already taking steps to improve further the clinical trials application process. That will ensure that those engaged in clinical trials can continue to develop innovative and cost-effective treatments, and that patients recruited in trials can continue to have safe and prompt access to medicines.

Once the UK is outside the EU network, it will still be possible for sponsors to run multi-state trials involving the UK. Data generated in a UK clinical trial will also be admissible to support regulatory activity in the EU and globally. The MHRA and UK ethics committees will make every effort to ensure that any parallel submissions to the UK are streamlined and efficient, for example by accepting the same application dossier and offering competitive timelines for assessment.

For medical devices and in vitro diagnostics, the new EU regulations entered into force in May 2017, with three and five-year transition periods respectively. The MHRA leads on the UK regulatory framework for medical devices and IVDs, including the appropriate alignment with international standards.

The Department for Digital, Culture, Media and Sport, the Information Commissioner’s Office and NHS England have all published EU exit operational readiness guidelines, including the actions that organisations need to take to ensure continuity of access to the processing and sharing of personal information and data.

I hope that I have made it clear to my hon. Friend the Member for Bolton West that we are fully committed not just to keeping pace with the rest of the world, but to taking strides ahead despite the uncertainty that we face with EU exit. The life sciences industrial strategy sets out the blueprint for that, and we continue to make rapid progress on implementation, to the benefit of the UK population, patients, the NHS and our economy.

Whorlton Hall

Caroline Dinenage Excerpts

Thursday 23rd May 2019 Commons Chamber

[Norman Lamb (North Norfolk) (LD)]

(Urgent Question): To ask the Minister if she will make a statement on the treatment of people with learning disabilities and complex needs at Whorlton Hall.

[The Minister for Care (Caroline Dinenage)]

Many of us here today, and many of those listening and watching this urgent question, will have seen the very disturbing footage shown on the “Panorama” TV programme last night. It was footage detailing the incredibly traumatic experiences of vulnerable people with learning disabilities and autism at Whorlton Hall—somewhere they should have been safe, somewhere they should have been cared for. The actions revealed by the programme are simply appalling—there is no other word to describe them—and I condemn any abuse of this kind completely and utterly.

I want to begin by saying that I can only imagine the impact of those experiences on the people themselves, and the lasting damage and trauma that it will have caused to them and their lives. It must also have been incredibly distressing for their families, watching what has been happening to their loved ones, unable to step in and unable to do anything to help them. It is utterly, utterly tragic. On behalf of the health and care system, I am deeply sorry that this has happened.

As hon. Members will be aware, unfortunately, this is not an isolated incident; we have heard reports like this before. That is why there have been a number of reports published even this week on the care of people with learning disabilities and autistic people in in-patient settings. All those reports have been commissioned directly or indirectly by the Government, and all of them have found very clear evidence of care that has fallen way below the standard we expect and the standards that people absolutely deserve.

The allegations of abuse at Whorlton Hall were shared with my Department, NHS England, the Care Quality Commission and the provider ahead of the programme airing yesterday. Immediate steps were taken to ensure the safety of patients, including ensuring that safe staffing levels were maintained following the suspension of a significant number of staff by the provider. A Whorlton Hall incident co-ordination group was established, involving NHS England; NHS Improvement; Cygnet, as the owner; the CQC’s regional head of inspection; the local clinical commissioning group; and the local authority.

Durham constabulary opened a criminal investigation earlier this month, and the CQC and NHS England are supporting its enquiries. While that investigation is ongoing, I cannot comment on the specific incidents or individuals depicted, as Members will understand. The evidence presented, including but not limited to the “Panorama” footage, must be thoroughly examined, and where those investigations find that allegations of abuse are substantiated, action will be taken.

One thing we can all be clear on is that what was shown last night was not care, nor was it in any way caring—suffice it to say that I am clear in my mind the nature of what was occurring at Whorlton Hall.

There are three questions that we need to consider urgently. First, was the activity in Whorlton Hall criminal? The police investigation is looking into that. Secondly, is the regulatory and inspection framework working for these types of services? We want to know why, after whistleblowing concerns had been raised, was the outrageous culture and behaviour at Whorlton Hall not identified? What went wrong? We will be working to understand in detail the timeline of events, the actions taken and where things might have been addressed earlier. Thirdly, was the oversight of commissioners fit for purpose? Where were the CQC and NHS England in this?

More broadly, there is a range of questions about whether these types of institutions and these types of in-patient settings are ever an appropriate place to keep vulnerable people for any extended length of time and why community provision is not sufficient. Work is continuing on all those subjects as well. We know the problems that exist in the system and we are utterly determined address them.

[Norman Lamb]

I thank the Minister for that response. Last night’s “Panorama” was deeply shocking and particularly distressing for any family who have a loved one in an institution and are worried about their safety. We saw people with learning disabilities and autism mocked, intimidated, taunted and provoked, and care workers admitting to deliberately hurting patients—behaviour appropriately described as psychological torture. The individuals responsible must be held to account, but so must the provider that allowed this dreadful culture to persist. Will there now be an investigation by the Health and Safety Executive into the possibility of criminal prosecution against the provider?

The truth is that, seven years on from Winterbourne View, the system continues to sanction a model of care that is outdated and wrong. If people are contained in institutions a long way from home, awful things will happen behind closed doors. Will the Secretary of State now take personal responsibility for closing down institutions that provide the wrong model of care? Why does the CQC continue to register new institutions that offer inappropriate institutional care? Does the CQC need new powers? What lessons must we learn from the fact that the CQC rated this place as good? Is this another case of whistleblowers not being listened to? How much was Cygnet charging the NHS per week for this awful abuse and neglect?

This horror comes in the same week as a damning CQC report on segregation, an equally scathing report by the Children’s Commissioner on children being wrongly placed in institutions where force is routinely used and the LeDeR—learning disabilities mortality review—report confirming the extent to which people with learning disabilities and autism are fatally failed by the system. Does the Minister accept that we are tolerating widespread human rights abuses? Is it true that the Government moved forward the publication of the CQC report to pre-empt the “Panorama” report? What families want is not another review; they want action to protect their loved ones.

Will the Government take action to end the endemic use of restraint—including face-down restraint against adults and children—five years after I issued guidance to that end? When will the Government tell us what will replace the transforming care programme? It ended in March and we are still waiting—there is hardly a sense of urgency. Finally, will there now be substantial investment in the development of community facilities, so that people with learning disabilities and autism have the chance of a good life that the rest of us take for granted?

[Caroline Dinenage]

These exchanges reflect the views that I am certain we all hold, and I thank the right hon. Gentleman for raising all those questions. The culture and behaviour shown on yesterday’s television programme are absolutely abhorrent and we must stamp them out. More broadly, it is clear from the reports published earlier this week, which the right hon. Gentleman refers to, that we need to do much more to improve the quality of care in mental health wards for anyone with a learning disability or autism. I want to reassure the House that we absolutely recognise that, and steps are being taken to address it.

Societies are rightly judged on the way we treat our most vulnerable citizens. This is not just about reviewing a few individual cases in which things went wrong; it is about a system across health, education, social care and criminal justice—it all needs to change. Today, people will rightly be very angry about what has happened and what was shown on last night’s television programme, and they will want answers. They will also rightly be very angry that, eight years after Winterbourne View, we have another scandalous case in which vulnerable people with learning disabilities or autism are on the receiving end. They will rightly ask what action has been taken and what more we need to do.

As the right hon. Gentleman will know, six months ago the Secretary of State commissioned the CQC report on segregation, seclusion and restrictive practices. It was published earlier this week simply because the original publication due date of 31 May is during a recess, and he will know that the Department has come in for enormous criticism in the past for publishing reports when Parliament is in recess, post elections or when the House is not sitting and for publishing late. We wanted to avoid all those things. That is why the date was brought forward. The publication was ready and we took the view to publish it. The publication of the LeDeR report was a matter for NHS England, of course, it being an independent document.

The action we announced in response to the CQC report on Tuesday confirms how seriously we take this issue. We are adamant that no stone should be left unturned in identifying problems, poor practice and care that falls short of what we would expect for our own family members. That said, this is not about segregation or seclusion or failings at specific hospitals, but about the need for far better oversight more generally. Where it is essential that somebody be supported at a distance from their home, we will make sure that those arrangements are supervised. We will not tolerate having people out of sight and out of mind. Where someone with a learning disability or an autistic person has to be an in-patient out of area, they will now be visited on site every six weeks if they are a child and every eight weeks if they are an adult.

The host clinical commissioning group will also be given new responsibilities to oversee and monitor the quality of care provided in their area. This is an issue not just for the regulator, but for those who commission the care. We must be clear that improving the quality of specialist in-patient care is critical, but we are committed to preventing people from entering crisis and having to be admitted to in-patient care in the first place, and that is what the transforming care programme is about. This programme has not finished. As was highlighted in the NHS long-term plan, the transforming care programme and the building the right support plan continue, and we are renewing and redoubling efforts to reduce the number of people in an in-patient setting by 35%. So far, it is down 22% from 2015, but that endeavour continues. The right hon. Gentleman highlights the report from the Children’s Commissioner on Monday. We take the issues they spoke about very seriously.

The right hon. Gentleman asked lots of questions, many of which I think were answered in the three questions I highlighted earlier—the questions that we will be addressing over the coming weeks: criminal liability, oversight and commissioning. Where there have been failings, these will be addressed. Autistic children often have a range of needs or supports that must be joined up, which is why we are reviewing our entire autism strategy and will extend it to include children. As part of the NHS long-term plan, there will be a concerted effort to implement arrangements to ensure that those at the highest risk of admission to a specialist hospital get the help they need, and we will ensure that every area has a dynamic support register in place.

We think that staff in these settings must be much better trained in awareness of learning disabilities and autism, which is why we conducted a thorough inquiry and public consultation on training for learning disabilities and autism. In the coming months, we will set out our response to that consultation and proposals to introduce mandatory training for all health and care staff. We will continue to bring those in-patient numbers down and take every step to take the best practice in health and care and make it the norm everywhere. We will root out toxic cultures and behaviours of the type we saw last night so very painfully on our television screens, but I am fully aware that there is no room for complacency.

[Several hon. Members rose—]

[Sir Desmond Swayne (New Forest West) (Con)]

What happens at the Care Quality Commission’s headquarters when a story such as this emerges? Are the inspectors who so recently rated the facility summoned in for a meeting without coffee, or perhaps with the rough end of a pineapple?

[Caroline Dinenage]

The Care Quality Commission is taking the situation incredibly seriously. Some massive concerns were raised last night, and Paul Lelliott from the CQC apologised and said that the matter would be very thoroughly addressed and investigated by its team.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I appreciate the Minister’s response, but the Secretary of State really should be here to deal with this. The abuse shown on the BBC “Panorama” programme last night was appalling, and it should never have been allowed to happen. The fact that it is eight years since the Winterbourne View scandal and nothing has changed should be a source of shame for the Government. Rather than warm words—the Government seem to be getting good at warm words these days, but little else—will the Minister take personal responsibility and tell us what she is doing to ensure that this never happens again?

The abuse that was shown was tantamount to psychological torture, with residents sworn at, threatened and intimidated. Other residents were violently restrained or deliberately hurt by care staff. As the Minister has mentioned, other cases—such as Mendip House and Thors Park—show that this is not an isolated incident; it is part of a pattern of cruel and callous behaviour in such institutions. There is only one sure way to end this abuse, and that is to close down the institutions and move people into supported placements in the community.

Many of the people who were abused at Whorlton Hall were hundreds of miles from their families. Does the Minister recognise that cutting people off from their support networks allows such abuse to carry on without anyone noticing? Labour has pledged £350 million extra per year to ensure that people can move from such institutions and be supported in the community instead. Will the Minister match that commitment?

In 2011, the Government pledged to end the use of units such as Whorlton Hall. Eight years later, however, there are still more than 2,200 people detained in inappropriate institutions. More recent targets, which were less ambitious, were also missed. After years of broken promises, autistic people, people with learning disabilities and their families cannot trust the Government to deliver on their promises. Is it not time the Government brought in an independent commissioner to oversee the closure of such units?

[Caroline Dinenage]

I do not agree with the hon. Lady that what I have said today is about warm words; it is about action. The CQC report that came out on Tuesday was commissioned by our Secretary of State to really shine a light on the matter. We are shining a light on some of the most distressing information so that we can address it—so that we cannot brush it under the carpet and speak warm words about it. Not only did we accept all the CQC’s recommendations, but we made more recommendations of our own that we intend to put into practice.

In answer to some of the hon. Lady’s questions, I am very clear that as far as possible, people should be treated in a community setting. If they have to go into an in-patient setting, they should be as close to home as possible and they should be there for the shortest possible time, with a very clear route out and plan for their future. To help to deliver that, we have committed £4.5 billion to community funding as part of the NHS long-term plan, and I expect a good proportion of that money to be spent on investing in the community settings that we need.

[Barbara Keeley]

Why not close them?

[Caroline Dinenage]

The hon. Lady is saying from a sedentary position that we should close settings, but we are talking about very vulnerable people who have complex needs and require special care, and we need to make sure that there are sufficient services in the community to support them. It would be a complete dereliction of our duty and responsibility to take people out of one setting that is not working for them and put them into another setting that will be as bad, or worse.

[Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)]

I thank the Minister for her robust efforts to get to grips with the matter. I have heard from my constituents overnight that they have no confidence in the CQC if it thought it could get away with assessing Whorlton Hall as good. If it takes an undercover investigator to highlight a message that whistleblowers are not getting through, why are the Government not taking immediate action properly to investigate every single in-patient centre so that the Minister can look us all in the eye and say, “I know which places are safe and which are not”?

[Caroline Dinenage]

My hon. Friend is absolutely right to raise that point. I think the CQC itself admitted to this. In fact, some of its social media engagement over the past 24 hours has been unprecedented in its level of frankness and openness, and in the way in which it has shown a desire to change and make this situation better. It has been very disturbing for everybody concerned, and it is true that NHS England has started enhanced oversight and scrutiny of this particular group’s other learning disability and autism settings to try to ensure that we are not going to uncover any more stories of such horror.

[Helen Goodman (Bishop Auckland) (Lab)]

What was revealed on “Panorama” last night was truly horrific. This was public service broadcasting at its best, but it should not have taken the BBC to uncover the case; the CQC got this totally wrong. However, whatever the failings of the CQC, ultimate responsibility must lie with those who own and manage these homes and make money out of them. I am therefore extremely concerned to hear that the Minister has put Cygnet on the body that is to look into this matter. There is a clear conflict of interest because Cygnet may end up needing to be prosecuted. Finally, the Government need to fund these services properly. It is no good having people who are not qualified and not properly paid working with the most vulnerable people in society.

[Caroline Dinenage]

Let me clarify what I said, because I think the hon. Lady might have slightly got the wrong end of the stick. I did not say that Cygnet was being put on a group that is investigating this situation. I said that a group was established to deal with the immediate problem as soon as the issue came to light. That immediate problem was the safety of the individuals living in this particular setting and the conduct of those whose behaviour had been so outrageous. At that point, we were told that 21 people had been suspended. The safety of the individuals living in the setting was therefore our immediate concern, as well as finding alternative places for many of them to go. At that point, there was an incident co-ordination group that included Cygnet because it is the owner, but that group was set up to deal with the immediate situation that needed to be dealt with very promptly.

[John Howell (Henley) (Con)]

The NHS has been using a system of ambulatory care, particularly to deal with elderly patients by treating them in their home, plus a hospital visit. Why has this not been rolled out quicker to those with learning disabilities and autism?

[Caroline Dinenage]

That is what we are looking towards, which is why the Government are putting so much more money—£4.5 billion of the extra investment in the NHS—into the sorts of community services that we need to make exactly that a reality. There are cases where people do end up in an in-patient setting, often because services have failed and their situation has almost reached crisis point. The transforming care and building the right support system that I spoke about earlier is all about ensuring that we get people out of those settings as quickly as possible and into the right kind of support in the community.

[Dr Sarah Wollaston (Totnes) (Change UK)]

Too many people are ending up in terrible institutional care hundreds of miles from home for the want of much more appropriate community care, including social care. The Minister has spoken about not wanting to delay the publication of reports, but she will know that the delay to the social care Green Paper has been unaccountably prolonged. Will she bring forward the social care Green Paper, because this issue lies at the root of inappropriate admissions?

[Caroline Dinenage]

The hon. Lady knows that I listen very carefully to what she says. I completely share her frustration about the delays to the social care Green Paper, but I do not think that we should ever be held back from making progress on all the things that are wrong in society that we care very deeply about because we are awaiting the publication of such documents. We will therefore be pushing forward with all the work on a lot of the issues that I have spoken about today as a matter of great urgency.

[Bob Blackman (Harrow East) (Con)]

Mencap has called for a cross-Department ministerial working group to review the system, and a taskforce made up of people with real-life experience of dealing with people with learning disabilities and autism. Will my hon. Friend confirm that she will set up both such groups so that we can get some action in helping people who are suffering?

[Caroline Dinenage]

There is already a cross-departmental working group on disability, and quite rightly, this could be part of its work. In addition, as part of the response to the CQC report published on Tuesday, the Secretary of State has committed to set up a group made up of academics and experts, including experts by experience, to look at exactly that.

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

I chair the Westminster Commission on Autism. The Minister will know that people on social media are asking why it took a television programme to reveal this. Can we learn the lessons quickly? I make no party political point—these crises have happened under other Governments, but we have to learn the lessons and reappraise the whole sector. Some people have said this morning that we should keep these children and adults close to home, in their communities, and that is right. We should also look at something that has really worked, which is the Children’s Commissioner, especially with someone like Anne Longfield in the role. That has been an enormous success, and perhaps we need a commissioner for autism, who would give a voice and a personality to this kind of crisis.

[Caroline Dinenage]

I greatly respect all the work that the hon. Gentleman does with autistic people, and I know he is passionate about this. He is right. We have committed to review the autism strategy. The Autism Act 2009 is the only condition-specific piece of legislation in British law, and we want to ensure that it continues to be fit for purpose. The consultation on the autism strategy review has just closed, and we will look carefully at everything that comes out of it.

[Tom Pursglove (Corby) (Con)]

What protection is in place for those who come forward to shine a light on allegations relating to such grave care? What is the Minister’s message to people who have concerns?

[Caroline Dinenage]

I am grateful to my hon. Friend for raising that, because it is the whistleblowers who have brought these concerns to everyone’s attention. It is deeply regrettable that whistleblowers brought this to people’s attention before, and it was investigated, but this abuse was not rooted out and stopped. We need more protection for whistleblowers. We have accepted some of the CQC’s recommendations on encouraging whistleblowers to come forward, and we are always looking at more ways to offer protection and encourage them to do so. It is always wrong when deeply disturbing practices have to be brought to light by those who shine a light on them.

[Mr Steve Reed (Croydon North) (Lab/Co-op)]

Children with autism and learning disabilities are still being pinned face-down on the floor, tied to beds or locked up in seclusion rooms. The Government promised five years ago to publish guidance to prevent that kind of abuse, but they still have not done it. After Whorlton Hall, we desperately need a date. When will the Government publish that guidance?

[Caroline Dinenage]

The Secretary of State commissioned a report on exactly that—segregation and restrictive practice. It was published on Tuesday, and we have accepted all the recommendations. We are working very hard on this. There will be guidance, but it is more important than that. As shown in the TV programme last night, there was training and guidance on the restrictive practices to be implemented, but it was ignored, and restraint was recorded incorrectly. This is a much bigger issue than the one the hon. Gentleman highlights.

[Rachel Maclean (Redditch) (Con)]

I see more and more families in my surgery with loved ones who suffer from autism or learning difficulties being failed by the system. Will the Minister give an assurance to my constituents and their families that there will be a genuine focus in the NHS long-term plan on these vulnerable people?

[Caroline Dinenage]

I thank my hon. Friend for that question; she is right to raise it. Autism and learning disability are both mentioned as clinical priorities in the NHS long-term plan. That is absolutely right, and we must relentlessly continue that focus.

CQC: Review of Restrictive Practices, Seclusion and Segregation

Caroline Dinenage Excerpts

Tuesday 21st May 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

The Government have made improving the care and treatment of autistic people and people with a learning disability a priority. Society is rightly judged on the way it treats its most vulnerable citizens.

In November 2018, the Secretary of State for Health and Social Care made a statement to the House of Commons following the reporting of the case of Bethany, a young autistic woman who was held in seclusion in hospital for too long.

Like everyone across the House, I have been moved by these individual cases and personal stories. I do not believe this is just about a few individual cases where things went wrong; this is about a system. A system across health, education, social care and criminal justice that needs to change.

We know there is good practice out there and excellent examples of staff working incredibly hard and supporting individuals and their families to receive the best possible care. We need to recognise and widely spread this practice so that it becomes the practice of all. However, there is variability and unacceptable practice. We must tackle this.

That is why the Secretary of State for Health and Social Care charged the Care Quality Commission (CQC) with undertaking a section 48 thematic review looking at the extent to which restrictive practice is being used in the NHS. This includes the use of segregation, prolonged seclusion and all forms of restraint: physical, mechanical or chemical.

We are adamant that no stone should remain unturned in identifying problems, poor practice and care which falls so far short of what we would expect for our own family.

The CQC is today publishing its interim report of this review, copies of which have been placed in the Library of the House. This report makes difficult reading. It provides early findings and recommendations on the use of segregation on mental health wards for children and young people and on wards for autistic people and/or those with learning disabilities.

This is an interim report and as the CQC themselves describe there is much work that remains to be done in the rest of the review. However, the Government accept these recommendations in full and are committed to working with partners across the health, education and care system to ensure that they are implemented.

It is absolutely essential that we take all necessary actions to learn from the issues raised in this interim report:

We will ensure each and every case of seclusion and long term segregation is thoroughly scrutinised and that every element of their care has been reviewed. We are clear that every possible step must be taken to ensure people get the care, support and treatment they need. We will ensure that they have access to specialist independent advocacy to support them and their families.

The model of care for autistic people and those with learning disabilities must be fit for purpose—we will convene an expert group for learning disabilities and autism, bringing together leading experts, including those from other countries, clinicians, academics, parents and carers and others, to develop a new care model taking the very best practice as the foundation.

We will strengthen safeguards, addressing the lack of join up across the reviews of care that people receive and working the Care Quality Commission to bolster the oversight arrangements for hospitals that use segregation.

We will empower specialist advocates to raise concerns when they know something is not right. We will also develop a new awareness raising campaign, to encourage staff, families and friends to come forward if they have concerns about care.

Hon. Members will be aware of the recent allegations of abuse at Whorlton Hall, into which Durham Constabulary are now leading a criminal investigation.

These allegations of abuse have been treated with the utmost seriousness. Steps have been taken to ensure the safety of residents at Whorlton Hall.

Where people—staff, family and friends—have concerns about any service they must raise them.

We will ensure that we continue to make progress across the board on fostering a just and open culture around safety and raising concerns in the NHS.

We need to improve the quality of concerns handling and ensure that this is true for every patient. Working with the Health Ombudsman we will deliver a single vision for improving how the NHS responds when concerns or complaints are raised, whether concerns are raised by patients, families, advocates or staff.

The National Guardian and the local network of Freedom to Speak Up Guardians are playing a crucial role across the country in providing safe avenues for staff to raise concerns within their own organisations. We will make it even easier for people to raise concerns about patient safety in the NHS by introducing a new digital reporting system.

Where it is essential that someone is supported at distance from home, we will make sure that those arrangements are adequately supervised. We cannot have people out of sight and out of mind. That is why we are introducing stronger oversight arrangements. Where someone with a learning disability or an autistic person is an inpatient out of area they will visited every six weeks if they are a child and every eight weeks if they are an adult, on site. The host Clinical Commissioning Group will also be given new responsibilities to oversee and monitor the quality of care.

But we must be clear: improving the quality of specialist inpatient care is critical. But we are committed to stopping people from going into crisis and being admitted into specialist inpatient care in the first place.

For example, we know that autistic children often have a range of needs. They require support from education, health and social care. We must strengthen this join up. That is why we are reviewing our autism strategy and will be extending it to include children.

We must ensure autistic children get the right support they need—at the right time—and as close to home as possible. By making our strategy all age we will look at how earlier intervention can stop escalating needs.

We know that autistic children and those with learning disabilities and their families can face difficulties when transitioning from child to adult services. We will continue to improve community services to support people appropriately from childhood into adulthood.

As part of the implementation of the NHS’s Long Term Plan there will be concerted effort in implementing arrangements to ensure that those at the highest risk of admission to a specialist hospital or other institutional setting are getting the help they need. We will ensure that every area has such ‘dynamic support registers’ in place.

We think all staff in every setting should have improved awareness of learning disability and autism. That is why, in the coming months, we will be setting out our response to our consultation on proposals to introduce mandatory training for all health and care staff.

We will continue to bring down inpatient numbers. We will take every step to take hold of the very best practice going on across the health and care system and make that the norm everywhere. There is no room for complacency.

[HCWS1569]

Learning Disabilities Mortality Review Programme

Caroline Dinenage Excerpts

Tuesday 21st May 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

I am announcing today the publication of the third annual report of the Learning Disabilities Mortality Review Programme (LeDeR). A copy has been deposited in the Libraries of both Houses.

The LeDeR programme was established in June 2015 to help reduce early deaths and health inequalities for people with a learning disability by supporting local areas in England to review the deaths of people with a learning disability and to ensure that the learning from these reviews lead to improved health and care services. The programme is led by the University of Bristol and commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England.

It finds that the quality of care offered to people with a learning disability sometimes falls short of the standards we expect. The existence of LeDeR programme testifies to our commitment to ensure that people with learning disabilities can access the best possible quality care and support.

Since the second LeDeR report was published in May 2018 the Government and its system partners have continued to make progress to implement the recommendations in that report.

To support delivery of the LeDeR programme in 2018-19, NHS England allocated an additional £1.4 million to support local areas to better establish their review programmes and reduce the backlog of reviews.

In November 2018, I wrote to health and social care employers to remind them of their statutory obligations in terms of staff training. We have also consulted on introducing mandatory learning disability and autism training to ensure that staff across health and social care have the right skills and knowledge to provide better support and will announce our next steps following analysis of the responses.

Work also continues on the inclusion of a digital flag in the records of people with a learning disability and autism to share information across health and care organisations and in the NHS Long-Term Plan we have committed to implementing this by 2023-24.

NHS England have also today published its “Action from Learning” report, which highlights the considerable work underway which will have a positive impact on the safety and quality of care to reduce early deaths and health inequalities.

The third annual LeDeR report covers the period 1 July 2016-31 December 2018, with a particular focus on deaths in 2018. From 1 July 2016-31 December 2018, 4,302 “in-scope” deaths were notified to the LeDeR programme. The majority of these (2,926) were notified in 2018. In 71 of the cases reviewed, people received care that fell so far short of expected good practice that it significantly impacted on their well-being or directly contributed to their cause of death.

Based on the evidence from completed LeDeR reviews, the report makes twelve recommendations for the education, health and care system which include:

Support for CCGs to ensure the timely completion of mortality reviews

Support to recognise deteriorating health in people with learning disabilities

Care co-ordination

Transition planning for young people

I am particularly concerned at the evidence the review presents of occasional poor practice in doctors giving the fact that a person has a learning disability or Down’s syndrome, as a rationale for a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order. To address this, the NHS medical director has written to senior doctors and nurses, the British Medical Association and the medical royal colleges to ensure that doctors are reminded that a patient having a learning disability can never be an acceptable reason for a DNACPR and that they must avoid this form of discrimination. People with a learning disability have the same right to enjoy a meaningful life as anyone.

While the increase in the number of reviews carried out is welcome, we acknowledge that the pace with which reviews are conducted needs to increase. I am pleased that NHS England have today announced a further £5 million to speed up reviews to ensure that they are carried out as quickly and as thoroughly as possible.

It is essential that we take all necessary actions to learn from the issues raised in the LeDeR report. We will consider the report and its recommendations in the coming weeks and consider the recommendations in due course.

[HCWS1571]

Learning Disabilities Mortality Review

Caroline Dinenage Excerpts

Wednesday 15th May 2019 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

(Urgent Question): To ask the Secretary of State for Health and Social Care to make a statement on the learning disabilities mortality review.

[The Minister for Care (Caroline Dinenage)]

I would like to start by restating our commitment to reducing the number of preventable deaths among those of our population with a learning disability and to addressing the persistent health inequalities that they experience. It is completely unacceptable that people in our country with a learning disability, and indeed autism, can expect a shorter life than the population as a whole.

Each and every death that might have been prevented is an absolute tragedy, and we must not compound that tragedy by failing to learn any lessons we can that might improve the care that is provided in the future. That is why the Government asked NHS England in the first place to commission the learning disabilities mortality review programme, known as LeDeR. The principle behind it is a relentless determination to learn from these deaths and to put in place changes to the way care is organised, provided and experienced, to make a real difference locally and nationally. It means challenging often deep-rooted, systematic or cultural issues that have existed for decades. It is driven by the fact that we are clear that the quality of care offered to people with a learning disability sometimes falls very short of the standards we expect, and that is simply not good enough. The existence of the LeDeR programme testifies to our commitment to address this issue so that people with a learning disability can access the best possible care and support. The annual reports published by the LeDeR programme and the recommendations it makes are all part of this.

Over the weekend, the media reported on the findings of a draft of the third annual LeDeR report, which is due to be published shortly. In making this statement, I would like to record my deep regret at this apparent leak. It is also a regret that Her Majesty’s Opposition should table an urgent question based on leaks and, indeed, that the Speaker’s Office should see fit to grant it. More generally, the House—

[Mr Speaker]

Order. The Minister will resume her seat. Forgive me, but I was being approached by the right hon. Member for South Holland and The Deepings (Sir John Hayes).

I have the highest regard for the Minister, who is always a person of the utmost courtesy. She can have an opinion about the decision of a Member to apply for an urgent question; it is not for a Member on the Treasury Bench to seek to offer a judgment on the way in which the Speaker discharges his responsibilities as Speaker. I have made a judgment that this matter warrants the attention of the House, and that judgment is not to be argued with or contradicted by a Member of the House. The Minister’s duty is to come to the House and answer the question, but do not argue the toss with the Chair. That is the wrong way to behave.

[Caroline Dinenage]

Thank you for clarifying that, Mr Speaker. I do not dispute that this is absolutely the right place and time to discuss this very important issue, but more broadly I think that Members across the House need to take a clearer view on how we discuss and view leaks, and to take a more consistent approach to that, because in recent weeks we have seen leaked information discussed in a very different way in the House.

[Mr Speaker]

I understand. I hope I heard the hon. Lady correctly and I think I heard her correctly. She said what she said, and I am happy that she has offered that clarification or explanation of her thinking. I have no desire to have any argument with her about the matter. The issue is what needs to be aired, rather than the procedural question, but she has said what she has said on that, and I am sure she will now want to attend to the specifics of the inquiry.

[Caroline Dinenage]

Thank you, Mr Speaker.

With regard to the LeDeR programme, I have committed in the past and will commit once again to bringing the final report before Parliament on the day of publication, which we are told by NHS England will be in the next few weeks. Members will feel as concerned as I do about some of the things in the report that have been leaked, and I will be happy to discuss the more detailed information when the report is fully published.

[Barbara Keeley]

Well, this is a mess, isn’t it? Last year, the first report from this important review was sneaked out on a Friday, in the middle of the local election results, and this year we have read about it through leaks to The Sunday Times and the Health Service Journal. The Minister says that it is a draft that is going to be published shortly; I understand that the authors handed it over on 1 March. How long does it take the Department to turn round a draft? Clearly, somebody somewhere thinks it should be out there, because somebody somewhere is leaking it. Will the Minister take responsibility for this process and ensure that future reports are published in a timely manner? I am not happy with “shortly” or “in a few weeks”; will she tell us when the full copy of the report—not just what was leaked, first in the Sunday papers and now in the Health Service Journal—will be available?

It appears from the leak that the review has been able to consider only a quarter of the premature deaths reported to it, leaving more than 3,000 families waiting for closure—it is those 3,000 families on whom we should be focusing—and that well over a third of cases do not even have a reviewer assigned to them. That shows that, as we suspected last year, the LeDeR programme is significantly under-resourced, so will the Minister pledge now to ensure that the review has the resources it needs in future?

Last year, the Government made 24 specific commitments relating to the annual report, and 15 of them were due to be completed by now. Will the Minister update the House on the progress on those commitments?

The leak tells us that the review found that in 8% of cases the care given

“fell so short of good practice that it significantly impacted on their wellbeing or directly contributed to their cause of death”.

What is the Minister doing now to ensure that no more people with learning disabilities die early because of poor care?

Lastly, and most disgracefully—I am certainly going to mention this from the leaked report—the report says that over a period of two years, at least 19 people with learning disabilities who died had “learning disabilities” or “Down’s syndrome” given as the reason not to resuscitate them. A patient having a learning disability or Down’s syndrome is not a reason to put a “do not resuscitate” order on their care. Does the Minister agree that such an approach, if it exists, smacks of eugenics and is completely unacceptable? What action will she take to ensure that it does not continue?

[Caroline Dinenage]

This is not a mess; the Department of Health and Social Care requested that NHS England commission the whole LeDeR programme. The report is an independent document, which is very important because we are talking about people’s lives and about deaths that could have been prevented. It is really important that the work is done by an independent group and that it is carefully scrutinised, and that that scrutiny and work to look at the recommendations—[Interruption.] If the shadow Minister would like to bob up and ask some questions, I will happily answer them, but if she is going to keep murmuring from a sedentary position, I will not be able to address anything that she says.

It is so important to do this process in an independent way, because we are talking about people’s lives. NHS England says that the LeDeR report has not been published yet because it contains some serious recommendations, as have other such reports, and NHS England needs to make sure that the correct people will be responsible for implementing those recommendations and that the document can be scrutinised in the correct way before it is published. I understand that the shadow Minister is always keen to get things published as quickly as possible, and not always with the benefit of their being done as thoroughly as possible, but in this case we will not be pushed. This is an independent document and I cannot control when it will be published, but the shadow Minister can rest assured that when it is published, I will be happy to answer any questions that arise from it.

Members will feel, as I do, that recent press reports are a clear indication that we need to do more on this, and I assure the House that we recognise that. The LeDeR programme confirms how seriously we take the issue of premature mortality and differences in life expectancy. We will continue to work with partners across Government and throughout the health and social care system to consider any recommendations that improve care for people with learning disabilities and autism and address the shameful inequalities that they experience. Everybody has a right to expect effective, compassionate and dignified care. If someone has a learning disability, their expectations should be no different.

I have already stated that I do not intend to comment on the specifics of the leaked bits of the document, which is independent and has not yet been published. However, like other Members, I am particularly concerned about any suggestion that doctors have recorded learning disability or Down’s syndrome as the reason for a “do not attempt cardio-pulmonary resuscitation” order—a DNACPR, as they call it. People with a learning disability have exactly the same right to enjoy a meaningful life as everyone else, and their disability should never, ever be used as an acceptable reason for a “do not resuscitate” order. We are taking immediate steps to ensure that doctors are reminded of their responsibilities and avoid any form of discrimination. [Interruption.] The shadow Minister says from a sedentary position that doctors should not need reminding. That is the whole point of commissioning the LeDeR review. Sometimes there are systematic or cultural ways of going about things in everyday life, whether in the medical profession or anywhere else, that mean people are not treated with the dignity and respect that they deserve. The whole point of the LeDeR review is to learn from every single preventable death and to make sure that no one else suffers in the same way.

The LeDeR programme published its second annual report in May 2018, and the Government’s response, which we published in September 2018, set out a range of actions for the Department of Health and Social Care, NHS England and other national partners to help to reduce premature mortality and improve outcomes for people with learning disabilities. Many of those actions have now been completed—for example, we recently closed our consultation exercise on plans to introduce mandatory training in learning disability and autism awareness for health and care staff, and we will set out plans to move forward on that later in the year.

The latest report will no doubt reinforce what we already know: that the Government and our health and care system need to do more to ensure that people with a learning disability receive good-quality, informed and safe care. There has been a significant improvement—there has been a tenfold increase in the number of LeDeR review cases that have been covered, the backlog has improved, and in 2018-19 NHS England invested an additional £1.4 million to support the local teams to accelerate the process, as well as to train 2,100 experts to carry out reviews. The process is new, but we are pushing forward and putting in the necessary resources to make sure that we deliver on time. The LeDeR programme is there to help to achieve what we have set out, which is to make sure that those with a learning disability should never expect to receive worse health outcomes. We will respond to the full version of the report as soon as it is published.

[Mr Mark Harper (Forest of Dean) (Con)]

I share the concern of the hon. Member for Worsley and Eccles South (Barbara Keeley) and the Minister about the fact that it appears that at least 19 patients had “do not resuscitate” orders specifically because of their learning disabilities. I welcome the fact that the Minister has made it clear that there will be an immediate notice to remind clinicians that that should never be a reason to not resuscitate a patient. May I ask her to go further, though? My understanding is that doctors should make “do not resuscitate” decisions only after a full discussion with their patient. It appears that, in these cases—without wishing to prejudge them—a doctor has made that decision without having had that discussion. Will the Minister also make it clear in her communication that the assumption should be that someone with a learning disability is just as capable of making these difficult decisions as everyone else? Their lives are worth as much as everyone else’s. That should be the assumption of everybody working in the national health service.

--- Later in debate ---

[Caroline Dinenage]

My right hon. Friend makes a perfect point. As I have said, I will not go into the details of the report—the independent report—that have been leaked and that have not yet been published. However, we are very clear that treatment decisions must be based on objective information and should never, ever be based on assumptions about a person’s quality of life. We are very clear that a learning disability should never be used as a reason for a “do not resuscitate” notice. We will take steps to remind doctors of their responsibilities to ensure that they provide the same level of care for people with a learning disability as they do for others. He is absolutely right to point out that family members’ and personal opinion should always be taken into consideration and that no one’s life should ever be undervalued in this way.

[Marsha De Cordova (Battersea) (Lab)]

I congratulate my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley) on securing this urgent question and you, Mr Speaker, on granting it. This is a mess. The Minister talked about the training that is expected to happen. Will she set out when the autism and learning disability training, on which this Government have recently consulted, will come into effect?

[Caroline Dinenage]

I thank the hon. Lady for her question. This very thorough consultation has received more than 5,000 responses. It has very recently concluded, and we are now going through those consultation responses, some of which are quite detailed. We hope to respond in the next two or three months to set out how we would like to move forward on this.

[John Howell (Henley) (Con)]

This question is similar to the “do not resuscitate” one. I am aware that a number of practitioners use seclusion, segregation and restraint against patients in the system. What is the Minister doing to stop that happening?

[Caroline Dinenage]

This is really important. We have seen an increase in reports of segregation and restraint, but that is partly because we have seen much better recording of the data. That is also very important, because we need to understand where people are being kept in seclusion or restrained inappropriately. The Secretary of State has asked the Care Quality Commission to review the matter and make recommendations about the use of restrictive interventions in settings that provide all sorts of residential care. The first part of that review will be reporting back very shortly.

[Norman Lamb (North Norfolk) (LD)]

I welcome the Minister’s clear statement that it is wholly unacceptable that people with learning disabilities continue to experience much shorter life expectancy. It is wholly unacceptable, but the problem is that we have all been saying this for years and nothing ever changes. We do not appear to be capable of learning the lessons that she says are necessary. One problem is that people with learning disabilities are often under the care of people who do not have the training necessary to understand the interaction between physical health conditions and learning disability. That is often the cause of that premature mortality. I brought together a group of clinicians who make the case for a new specialty in learning disability so that we have people who understand those crucial interactions between physical ill health and learning disability. Will the Minister meet me and those clinicians so that we can really understand how we can start to make a difference here rather than continuing to say that it is unacceptable and doing nothing effective about it?

[Caroline Dinenage]

I start by saying that I am always very happy to meet the right hon. Gentleman because he has great expertise, knowledge and understanding of this field and often makes incredibly valuable suggestions. In response to his question, that is why the commitment to mandatory training for all health and care staff is absolutely vital. We should not forget that this is not just about medical professionals, but about people such as receptionists. The way that adults with learning disabilities and autism are treated by someone at the front desk of a health and care setting can immeasurably affect their interaction with that provider. That is why this training is so important, why we have consulted so widely on how to deliver it, and why we will set out some really coherent plans later on in the year.

[Sir Edward Leigh (Gainsborough) (Con)]

May I for one thank you, Mr Speaker, for allowing the House of Commons to turn the spotlight on people with learning disabilities? We should never miss an opportunity to talk about a part of our population whose problems are often swept under the carpet. That applies particularly to people with Down’s syndrome. We must proclaim that, in this country, there are no second-class citizens whatever disability a person might have, including Down’s syndrome. There are some countries, for instance Iceland, where there is virtual genocide—there is a 100% abortion rate for Down’s syndrome. Will the Minister proclaim now from the Dispatch Box that, if a person has Down’s syndrome, they are just as valued, just as loved, and just as cared for by society as anybody else?

[Caroline Dinenage]

I do not think I could have said it any better than my right hon. Friend. Mencap has put out a fantastic tweet featuring a particularly special young man who has Down’s syndrome. He is incredibly brilliant in the way that he articulates how very proud he is to live with Down’s syndrome and to be just as useful, just as important and just as special as everybody else, and how that makes him just as much a valued member of society as others—in fact probably more so.

[Anneliese Dodds (Oxford East) (Lab/Co-op)]

It is six years since Connor Sparrowhawk died, yet these leaks—yes, leaks—indicate that 8% of the cases reviewed showed that people with learning disabilities had been harmed or even killed by the care that they received. What was meant to be helping them was actually harming them. That raises enormous questions, of course, about all the cases that have not been reviewed. The Minister said that action is being taken to deal with the backlog, but she knows that it is enormous. She must also know that the time that elapses after a death really counts for the amount of learning and the amount of change that will follow. Will she tell us exactly what she is doing to speed up the review of these cases, as it is just so important?

[Caroline Dinenage]

The hon. Lady is absolutely right to raise the case of Connor Sparrowhawk, which was an absolutely tragic lack of care. I have met his mum, Dr Sara Ryan, and I greatly value her feedback on how we move forward with the LeDeR programme, because she has such an important insight into the matter. As I have said, NHS England is putting in additional funding to clear the backlog, and the NHS planning guidance for 2019-20 is very clear that clinical commissioning groups must have robust plans in place to make sure that LeDeR reviews are undertaken within six months of a notification of death in their local area. The resources are going in and the guidelines are there to ensure that that happens.

[Bob Blackman (Harrow East) (Con)]

I must declare an interest: my sister was born with profound learning disabilities. Later this year, hopefully, she will celebrate her 60th birthday. During my lifetime, I have seen far too many young people with learning disabilities die premature deaths. One of the biggest problems is when they suffer a physical problem and have to go to A&E, or through the primary care system. If a doctor or surgeon diagnoses that individual, part and parcel of the communication is talking to them and getting a response. People with profound learning disabilities cannot do that, so doctors often issue DNRs—I have personal experience of this—on people who are perfectly capable of having a perfectly good quality of life. Can my hon. Friend ensure that individuals who have profound disabilities have a named person from the health service who will give advice before any such decisions are made?

[Caroline Dinenage]

I am grateful to my hon. Friend for his impassioned plea; he makes an excellent point. We have spoken quite comprehensively today about how important it is that people with learning disabilities are never written off as a “do not resuscitate”, because that is absolutely wrong. I can tell him—I think he will find this useful—that we have introduced annual GP health checks for people with a learning disability to help to recognise these health inequalities, so that some long-term health conditions can be picked up much earlier and diagnosed more quickly, and prevention can be put in place much sooner.

[Diana Johnson (Kingston upon Hull North) (Lab)]

I wonder if the Minister recognises that for many families the review feels like the NHS marking its own homework, and that there needs to be more of an independent body to look at all the cases to give the reassurance that those families want.

[Caroline Dinenage]

I do recognise what the hon. Lady is saying. It is difficult to know how best to analyse something as tragic as a death—how to bring forward all the relevant expertise. That is why NHS England works with the University of Bristol on this programme. It is a very new programme—the report to be published shortly will only be the third one—and we are always open to ways in which it can be improved and seen to be more independent, more thorough and to make more difference.

[Nigel Huddleston (Mid Worcestershire) (Con)]

I welcome the review and understand the Minister’s reluctance to comment on rumours and leaks, but as a point of principle does she agree that access to specialist services and care, as well as early and accurate diagnosis, is really important and should be consistently applied across the country? Will she therefore assure me that people with learning disabilities in Worcestershire will receive the same good service as people elsewhere in the country—in Birmingham or London, for example?

[Caroline Dinenage]

My hon. Friend is absolutely right that nobody with a learning disability, autism or any other condition should expect to receive worse care. Everybody should expect the same level of quality care, no matter who they are or where in the country they live. That is what we are working towards, and learning from deaths is a key element of helping to deliver that aim.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I am pleased to hear the Minister condemn “do not resuscitate” instructions based on a person having a learning disability, but surely this situation is not a matter of mild neglect requiring a reminder letter; this is a grave abuse of power perpetrated on some of the most vulnerable people in our society. Does it not require disciplinary action?

[Caroline Dinenage]

The hon. Gentleman has partly tapped into my frustration with the fact that I am here today commenting on leaks of a report that has not yet been published, rather than on the full report, which, when it comes out, will provide clear recommendations as to how we can move forward on this matter. As I have said, we are already writing to reinforce the message that should be self-evident—that learning disabilities should never be a reason for a “do not resuscitate”. When the report is finally published, it will include a very well-considered recommendation as to how we tackle this issue in a way that will ensure that this situation will never happen in future.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

Thank you for allowing this urgent question, Mr Speaker. We should acknowledge that those with learning disabilities have not had their fair share of parliamentary time, and this review into learning disabilities mortality will be a matter of huge concern to them, their friends and their families. The Minister says that resources are going into the review. Will she confirm that a review will be allocated to everybody who has reported a death, and that the impact on access to care for people with learning disabilities from socioeconomically deprived backgrounds is being specifically considered?

[Caroline Dinenage]

The hon. Lady is absolutely right that we need to have much more discussions like this in this place because health inequalities need to be addressed and we need to be outspoken about them. The whole point of asking NHS England to commission this review is to think about how we address the most severe of these inequalities, which is when people die early or in a way that might have been preventable. We want to ensure that every single death of a person with a learning disability—whether or not people regard that it was preventable from the outset—is looked at very carefully. People should always have that reassurance, regardless of where they live and what kind of socioeconomic background they come from.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

Vaccinations are one of the best ways to protect health and reduce mortality, and I was pleased that the Government pledged to increase the uptake among people with learning disabilities. Will the Minister update the House as to what progress she is making with that Government pledge?

[Caroline Dinenage]

The hon. Lady is right that vaccinations are very important. We have introduced the annual health check for people with learning disabilities because it is an opportunity for them to have a one to one with their GP to check that all things such as vaccinations are up to date, but also to see whether there are any other long-term health issues that have not yet been spotted. I speak about this from an entirely selfish point of view because a dear friend of mine—my self-appointed best friend, who was one of my constituents—very sadly died last year from a form of cancer that would have been curable had her case been picked up earlier. That is why health checks for people with learning disabilities are vital.

Oral Answers to Questions

Caroline Dinenage Excerpts

Tuesday 7th May 2019 Commons Chamber

[Huw Merriman (Bexhill and Battle) (Con)]

8. What steps he is taking to improve care for people with autism.

[The Minister for Care (Caroline Dinenage)]

We are absolutely resolute in our commitment to improving care and support for autistic people, and we will launch a refreshed autism strategy, which will include children, by the end of the year. We have also launched a national call for evidence, to hear what we are doing that works and where we need to do more, and we have already received more than 2,000 responses.

[Huw Merriman]

I welcome the NHS long-term plan and the steps that will go towards helping autistic people in the healthcare system. Does the Minister agree that we will make a real difference only if we improve the recording of autism in local health and care records? Will she therefore commit to requiring the NHS to record autism diagnoses in each area with the aim of improving autistic people’s health?

[Caroline Dinenage]

My hon. Friend is absolutely right to raise this issue. Reasonable adjustments are critical for improving the experiences of health and care for autistic people. That is why the long-term plan commits to a digital flag in patient records, which will ensure that staff know whether a patient has a learning disability or autism. At the same time, we are looking at how we record where a diagnosis of autism has been made.

[Dr Paul Williams (Stockton South) (Lab)]

In 2017, more than 100 MPs wrote to the then Health Secretary demanding a national target of a three-month waiting time for autism diagnosis because waits were more than four years in some areas. Stockton clinical commissioning group and Stockton Council have reduced waits, but what do current figures show? Will the Government now set a target in line with National Institute for Health and Care Excellence guidance?

[Caroline Dinenage]

I am pleased the hon. Gentleman has raised this issue, because he is absolutely right that we need to drive up performance nationally on diagnosis for autistic people. It is only with diagnosis that people can get the support and help they need. We are collecting data for the first time. It will be published later this year for the first time. It will mean that each area can be held to account and given the help and support it needs to drive up those figures.

[Jim Shannon (Strangford) (DUP)]

Will the Minister further outline the steps that have been taken to push for a UK-wide, ring-fenced uplift to respite care funding for those who suffer from autism, bearing in mind that there is a two-year waiting list in some healthcare trusts for families to access overnight respite care?

[Caroline Dinenage]

That is a really good point. We all know that access to respite care can be incredibly valuable, both for autistic people and their carers and their loved ones. That is why we are supporting CCGs that want to invest in respite care, and we are looking more carefully at how we can direct funding to these important services.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

Eight years after the Government pledged to move autistic people out of in-patient units following the Winterbourne View scandal, there are still 2,260 people in such units, many of whom are subject to restraint, over-medication, seclusion and even neglect. Rather than reviews and warm words, will the Secretary of State now act to change things by matching Labour’s pledge of £350 million of extra funding to move autistic people and people with learning disabilities back into the community where they belong?

[Caroline Dinenage]

Of the original 2015 cohort that the hon. Lady mentioned, 6,325 people have been discharged and 476 beds have been decommissioned, but the thing is that people are still coming in. The only way we can achieve permanent, long-term cuts is if we invest in community health. That is why the long-term plan commits to an extra £4.5 billion a year for community health. Local providers are expected to use some of that to develop the right specialist services in the community to reduce avoidable admissions.

[Lyn Brown (West Ham) (Lab)]

9. What recent assessment he has made of the efficiency of decision making by the National Institute for Health and Care Excellence.

--- Later in debate ---

[Martin Vickers (Cleethorpes) (Con)]

15. What recent assessment he has made of the adequacy of support for people with dementia.

[The Minister for Care (Caroline Dinenage)]

We are absolutely committed to making this the best country in the world in which to live with dementia by 2020. Already, more than two thirds of people with dementia receive a diagnosis; there are 2.85 million dementia friends and 346 areas in England are dementia friendly; and the £250 million dementia discovery fund is the largest venture fund in the world aimed at discovering and developing therapies for dementia.

[Martin Vickers]

I thank the Minister for her reply. I recently met representatives of the Alzheimer’s Society, which is, as the Minister will know, pushing forward with a campaign for more support for those suffering from dementia. Can she assure me that, despite what she has just said, this will be one of the main focuses of her Department during the comprehensive spending review?

[Caroline Dinenage]

We are absolutely committed to ensuring that everybody, including those who live with dementia, has access to the care and support that they need. We have noted the very important contributions of the Alzheimer’s Society and of a number of other reports. We are considering a number of different funding options and are keen to draw on the best practice of what works so that no one ends up spending their life savings on their care.

[Tracy Brabin (Batley and Spen) (Lab/Co-op)]

My friend and constituent Malcolm Haigh, who is known locally as Mr History because of his forensic knowledge of the history of Batley and Spen, is now living with dementia. We know that social prescribing for dementia sufferers really does work, and I congratulate Kirklees Council on its innovative Community Plus scheme, which uses social prescribing for dementia. What auditing is going on that will look at the community groups that are offering these singing clubs and walking and cycling groups, and how we audit them in order to make the best of social prescribing so that we take the burden off the NHS?

[Caroline Dinenage]

Mr History sounds fabulous. There will be a new academy of social prescribing, which will look at some of the incredibly valuable work done by communities up and down the country and really be able to draw out some of that best-value analysis.

[David Duguid (Banff and Buchan) (Con)]

16. What steps his Department is taking to increase awareness of rare, genetic and undiagnosed conditions in mental health services.

--- Later in debate ---

[Martin Vickers (Cleethorpes) (Con)]

T9. Some 1,486 of my constituents have been diagnosed as suffering from dementia. The Alzheimer’s Society is urging that, to provide the best support and care, carers should have tier 2 training. Is the Minister doing everything possible to achieve that?

[The Minister for Care (Caroline Dinenage)]

Yes. By 2020, we expect all relevant staff to have received appropriate dementia training.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

T4. In the north-east, over half of domiciliary care workers are on zero-hours contracts, 40% have no relevant qualification and, as the recent Low Pay Commission report shows, rates of non-payment of the minimum wage are rising, but enforcement is not. What will the Secretary of State do to improve the pay, conditions and training of careworkers who provide such an essential service?

[Caroline Dinenage]

This is all about getting more money into the system. That is why we have increased spending on adult social care by 9% over the last three years. We are focusing on attracting more people into adult social care, which is why we had the “Every Day is Different” recruitment campaign, to ensure that we get more brilliant-quality staff into adult social care roles.

[Nigel Mills (Amber Valley) (Con)]

T10. Does the Secretary of State agree that nursing associates are an excellent new role on the frontline of the NHS, delivering hands-on care for patients? If so, what more can be done to get more of them across the country?

Health and Social Care Providers

Caroline Dinenage Excerpts

Wednesday 1st May 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

Yesterday, 30 April 2019, Four Seasons healthcare group announced that they have appointed Richard Fleming, Mark Firmin and Richard Beard (Alvarez and Marsal) as administrators to Elli Investments Limited (EIL Guernsey) and Elli Finance (UK) Plc (EFUK). These two companies between them hold £625 million of the company’s debt. It has also announced the launch of an independent sales process of the operational parts of the group, Four Seasons healthcare, Brighterkind and the Huntercombe group, which will continue to deliver care as normal.

The group has been going through financial restructuring negotiations with its main creditor H/2 Capital Partners since December 2017 with a standstill agreement on its interest payments in place. This agreement has been extended several times, with the latest of these having expired at 23:59 on 29 April. The planned sale of the operating businesses, through an independent, court appointed administrator, will now bring greater certainty to those in care, their families and the 22,000 people employed by the company.

I would like to update the House on the steps being taken to assure people with care and support needs currently being met by the Four Seasons healthcare group that they should not see a gap in their care service—no matter how their care is funded.

I have met with the company and the administrator to seek assurance that they are putting the continuity of care at the forefront of this process and that there will be no sudden care home closures. I am pleased to confirm that they have provided both me and the Care Quality Commission with this reassurance.

In the event that a buyer is not found for any of the care homes, the company has undertaken to manage any future plans around the transition of care with great sensitivity, taking time to ensure that residents are supported to find a new home.

In 2014, the law was changed giving the CQC a new responsibility to monitor the financial sustainability of the largest and most-difficult-to-replace care providers across the country. That means the CQC has a legal duty to notify local authorities if it considers there to be a credible risk of service disruption (stage 6 notification) as a result of business failure so that they have more time to prepare their plans to protect individuals. The CQC is clear that there is no current risk of service disruption and is not issuing a stage 6 notification to local authorities at this time.

The Care Act 2014 also places duties on local authorities to intervene to protect individuals where their care provider is no longer able to carry on because of business failure. There should never be a gap in the care that an individual receives. Local authorities have a statutory duty under section 48(2) of the Care Act to meet the needs of individuals temporarily if their care provider is no longer able to carry on. Business failure is a normal part of a functioning market and local authorities have appropriate plans in place to minimise disruption of services

The CQC and my Department are closely monitoring the situation. They are also working closely with the Local Government Association, the Association of Directors of Adult Social Services, NHS England and Four Seasons healthcare group to ensure that individuals’ care and support needs continue to be met.

[HCWS1532]

Mental Capacity (Amendment) Bill [Lords]

Caroline Dinenage Excerpts

Ping Pong: House of Commons
Tuesday 2nd April 2019 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I beg to move,

That this House does not insist on its amendment 1 to which the Lords has disagreed, and disagrees with Lords amendment 1B proposed in lieu, but proposes amendment (a) to the Bill in lieu of the Lords amendment.

[Mr Deputy Speaker]

With this it will be convenient to consider the following:

That this House disagrees with Lords amendment 25A proposed to its amendment 25, but proposes amendments (a) and (b) to its amendment 25 in lieu of the Lords amendment.

[Caroline Dinenage]

We now have an opportunity to deliver reforms that will provide quicker and fuller access to protections for the 125,000 people who are not currently receiving them. That is 125,000 vulnerable people without the legal protection that they deserve, whose families do not have peace of mind, and whose care providers have no legal cover for supporting them. We now have an opportunity to rectify this situation.

In February, the other place considered the 56 amendments made to the Bill by the House of Commons, the vast majority of which were agreed with. However, the Lords tabled alternatives to two of the Commons amendments, and they are the focus of our discussions.

[Sir Peter Bottomley (Worthing West) (Con)]

The Minister has rightly pointed out that the Bill will provide a great advantage to those who are directly affected. I do not want to be a total patsy for my local authority, but will she explain what the benefit will be for local authorities, which are responsible for trying to protect people’s welfare and safety?

[Caroline Dinenage]

My hon. Friend makes an incredibly important point. This issue has been a huge burden for local authorities: they have had to carry out multiple deprivation of liberty safeguards often for the same people and often when those people move from one setting to another. That involves a huge amount of bureaucracy and does not offer any better protection for the individuals concerned. The new service will enable local authorities to do this in a much more streamlined and efficient way. It will save them money and, at the same time, offer better protection for the individuals about whom we all care.

Lords amendment 1B was tabled by Baroness Tyler of Enfield to set out the meaning of a deprivation of liberty positively, rather than by using the exclusionary approach set out by the Government. Noble lords are, of course, absolutely right to want to ensure that any definition is understood by people and practitioners. However, a positive definition of a deprivation of liberty is likely to be subject to a legal challenge as article 5 case law evolves, and it would become unfit for purpose incredibly quickly. This is a view not only shared by the Government, but highlighted beautifully in the other place by the esteemed legal experts Lord Mackay and Lord Hope.

Lords amendment 1B does not link the definition of a deprivation of liberty to article 5 of the European convention on human rights, so creating a risk of the definition set out in statute diverging from the convention. This would mean that people who fall outside Parliament’s concept of deprivation of liberty but within the article 5 definition could not have their deprivation of liberty authorised under the Mental Capacity Act 2005. For those people, only the High Court would be available to authorise such a deprivation of liberty, which, in turn, would give rise to excessive delays in accessing vital safeguards.

That is precisely the situation that this piece of legislation looks to address—there are already too many people subject to delays when accessing safeguards, and we cannot introduce a provision that would further risk this.

Given that the Government have these concerns, we cannot agree with the noble lords in their amendment 1B. However, we know that concerns in the other place are reflected by many across the sector and we have taken that on board. We have listened carefully to the views of MPs, peers and other stakeholders and decided not to insist on amendment 1. Instead, I propose that the meaning of a deprivation of liberty will still be as defined under article 5 of the convention, as it is under section 64(5) of the Mental Capacity Act, but there will not be a clarification of the meaning of a deprivation of liberty in the Bill. The Bill will work alongside the rest of the Mental Capacity Act, so it does not impact on the existing definition.

I reassure the House that the Government are still absolutely committed to providing clarification regarding the meaning of a deprivation of liberty for both people and practitioners. We will use the code of practice to lay out in very clear terms and provide details of when a deprivation of liberty is and is not occurring, and this guidance will reflect existing case law. We will set out the meaning of a deprivation of liberty in a positive framing and in a way that is clearer for people and practitioners. We will also include case studies in the code to help bring this to life. Government amendment (a) in lieu of Lords amendment 1B will prescribe that the code of practice must contain guidance on what kind of arrangements amount to a deprivation of liberty.

[Kevin Foster (Torbay) (Con)]

I thank the Minister for giving way and I am reassured by what she says. It would not be appropriate, for example, to put case studies on the front of a piece of primary legislation. Will she outline the timescale for bringing that code of practice forward?

--- Later in debate ---

[Caroline Dinenage]

The code of practice is being worked on as we speak. It is very important that we take it forward in partnership with all the key stakeholders and those who are involved at the front end implementing the liberty protection safeguards. Once we are all content that the code of practice is robust and fully covers everything that we want it to it will then be presented to both Houses of Parliament.

This will mean that the definition will be considered regularly. It will remain up to date with evolving case law. It means that we are laying a report of the review before Parliament and that there will be a review within three years of the measure coming into force to ensure that it is working as intended. The review will extend to all the guidance related to the liberty protection safeguards contained in the code of practice and not just the definition. By regularly reviewing the code in this way, we will ensure that there is up-to-date guidance for people and practitioners and this will support the successful operation of the liberty protection safeguard system.

The amendment will ensure that the code clarifies when a deprivation of liberty does or does not apply and provide useful guidance for families, carers and professionals while also ensuring that we do not put a definition in statute that conflicts with article 5 of the convention and I ask the House for its support in this.

I shall briefly turn to Lords amendment 25A, which was tabled in the other place with the admirable aim of ensuring that the authorisation record is provided to the individual and other relevant persons in a timely manner. This followed the Government amendment that clarified the responsible body’s duty to provide information to the person and other relevant persons. Noble lords amended the Bill to specify that a record must be kept if the authorisation record is not provided immediately. If the authorisation record is not provided to the person within 72 hours then a review must be conducted.

The Government agree that it is very important to make sure that the authorisation process record is provided quickly. However, there are some issues with Lords amendment 25A that need to be addressed before it can be put into statute. For example, it does not make a specific person or organisation responsible for recording that an authorisation record has not been provided for completing a review, so the duty cannot be enforced. Government amendment (a) in lieu of Lords Amendment 25A states:

“After authorisation arrangements, the responsible body must, without delay, arrange for a copy of the authorisation record to be given or sent.”

Government amendment (b) in lieu will ensure that if the responsible body has not done this within 72 hours of the arrangements being authorised, it must review and record why this has not happened. Providing information, including in the authorisation record, is so important to ensure that people are able to exercise their rights. The Government have listened and reflected on the concerns of the other place and have brought forward this amendment. I ask that the House supports it.

Finally, I take this opportunity to put on record my thanks to the Members of both Houses. We set out to consult very widely on this piece of legislation and to listen very carefully to the concerns of both Houses. Both Houses have very carefully scrutinised this crucial piece of legislation. I also thank many of the stakeholders who have supported its development. I thank the Bill team, particularly the Bill manager Sharon Egan, and officials across the UK and Welsh Governments who have worked with the team to deliver this reform. I thank, too, the legal team and my private secretary Flora Henderson. It is through a great deal of dedication and hard work that we will be able to rectify a failing system and provide protections to the 125,000 vulnerable people for whom it currently falls well short.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

When we last debated this Bill, I was clear that Labour did not think that the Bill was adequate to become law. The Minister has just expressed her thanks, but we did make it clear that it contained a number of serious flaws and this still remains the case. While improvements have been made in the House of Lords, they do not fix many of the concerns that we still have with this Bill.

The Bill still places more power than it should in the hands of care home managers. From organising assessments to carrying out consultations with the cared-for person, the Bill means that an untrained, or an ineffective, care home manager could end up carrying out the process in a flawed or improper way.

Recently, there was a focus on the scandal of abuse that happened at the Mendip House Care Home in Somerset, with six autistic residents with complex needs. The Safeguarding Adults Review carried out by the Somerset safeguarding board revealed a host of management failures by the National Autistic Society. The registered manager of that particular care home did not address the unprofessional behaviour of a thuggish gang of male staff. This resulted in the following abuse being meted out to the residents of Mendip House: they were “ridden like horses” by staff; forced to crawl on all fours; made to eat raw chillies; and, in one horrific instance, forced to eat food spiked with mustard, which caused the resident to vomit. The resident was then made by a member of staff to drink that vomit.

People living in Mendip House had complex needs and all would have lacked capacity to make certain decisions and all required deprivation of liberty safeguards. The Care Quality Commission had not receive any notifications that DoLS had been authorised. On care planning and recording, the review report on Mendip House states:

“Care plans were very poor with no mental health or Best Interests assessments recorded... DoLS not being followed.... recording poor, plans out of date...”

The Minister has previously said that, through this Bill, the Government

“are ensuring that people’s wishes are always considered and respected, and that people are safe, cared for and looked after.”—[Official Report, 18 December 2018; Vol. 651, c. 757.]

But I have just cited a case where the care home manager neglected both care planning and safeguarding, so what steps will the Minister take to investigate what happened at Mendip House? Will she ensure that such behaviour does not continue under the provisions of this Bill, given that so much power is given to care home managers? Today is World Autism Awareness Day, and we must do more than pay lip service to showing solidarity with autistic people.

Clinical Negligence Indemnity Cover

Caroline Dinenage Excerpts

Monday 1st April 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

I am today updating the House on recent developments regarding indemnity arrangements for NHS general practice in England.

The Government have today launched the Clinical Negligence Scheme for General Practice (CNSGP), operated by NHS resolution on behalf of the Secretary of State for Health and Social Care. The regulations establishing the scheme are at:

http://www.legislation.gov.uk/uksi/2019/334/contents/made. NHS resolution have published guidance covering the scope and operation of the scheme:

https://resolution.nhs.uk/services/claims-management/clinical-claims/clinical-nealigence-scheme-for-general-practice/. The new scheme delivers a key component of the GP contract for 2019-20 and is expected to contribute to the recruitment and retention of GPs in the future. The scheme provides comprehensive cover to all GPs and their wider practice team for clinical negligence relating to NHS services occurring from 1 April 2019. All GPs and others providing primary medical services are automatically covered under the scheme. In addition, GPs and their practice staff providing other types of NHS services as part of their GP practice are also covered. There is no charge for this cover.

In parallel, to deliver on our commitment to put in place an existing liabilities scheme (ELS), we have agreed commercial terms with the Medical Protection Society covering claims for historic NHS clinical negligence incidents of their GP members occurring at any time before 1 April 2019. NHS resolution will have oversight of the arrangements for the new scheme and for an interim period claims handling will be retained by the MPS. Discussions are ongoing with other Medical Defence Organisations.

The Department will keep the operation of both CNSGP and the ELS arrangements under close scrutiny to ensure an effective service for GPs and the value for money of both schemes.

[HCWS1470]

Oral Answers to Questions

Caroline Dinenage Excerpts

Tuesday 26th March 2019 Commons Chamber

[Mary Glindon (North Tyneside) (Lab)]

5. What assessment he has made of the effect of prescription charges on the health and wellbeing of people with asthma.

[The Minister for Care (Caroline Dinenage)]

Extensive arrangements are already in place to help people afford NHS prescriptions. Those include a broad range of prescription charge exemptions, for which somebody with asthma may apply.

[Mary Glindon]

More than 90% of people on low incomes say they struggle to afford their prescriptions, and 71% told Asthma UK they skipped their asthma medication due to cost. Given the health inequalities in this country, will the Minister investigate that injustice?

[Caroline Dinenage]

People on low incomes who do not qualify for an exemption may be eligible for either full or partial help with prescription charges through the NHS low-income scheme. In addition, for those who do not qualify for that, the prescription pre-payment certificate is available, under which everybody can get all the prescriptions they need for only £2 a week.

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

Of the 300,000 who have missed out on their prescriptions, a quarter have had a flare-up of their asthma and 13% have ended up in hospital. Does the Minister not accept that prescription charges simply are not cost-effective and should be abolished, as they have been in Scotland?

[Caroline Dinenage]

Almost 90% of prescription items dispensed in the community in England are free of charge. That includes medicines for the treatment of asthma. The fact is that people who, like me, suffer from asthma and need those prescriptions have to decide, as taxpayers—as the people funding our NHS—whether we would rather contribute to those prescriptions or see the underfunding we have seen in Scotland, where GPs have been underfunded by almost £660 million over the last four years. It is a case of priorities.

[Julie Cooper (Burnley) (Lab)]

I miss the former Minister, the hon. Member for Winchester (Steve Brine), but commend him for his principled stance.

The Minister is missing the point on prescription charges. It is now more than 50 years since the eligibility criteria for medical exemption charges were reviewed, and next week prescription charges will rise again, placing a financial burden on many who require regular medication for long-term conditions. Does she agree that it is high time the Government moved to address the very many anomalies in the system? How can it be fair that patients with some chronic illnesses get free prescriptions for all their ailments, while asthma sufferers pay for everything? When will she review this unfair system?

[Caroline Dinenage]

We all miss my hon. Friend the Member for Winchester (Steve Brine), so I thank the hon. Lady for her comments.

Since prescription charges were introduced, Governments of all colours have decided that some patients should pay prescription charges to contribute to the cost of running the NHS, but almost 90% of prescription items are dispensed in the community free of charge, which I think the hon. Lady will agree is an enormous amount.

[Mr Stephen Hepburn (Jarrow) (Lab)]

6. What recent progress has been made in the discussions between NHS England and Vertex Pharmaceuticals on making Orkambi available on the NHS.

--- Later in debate ---

[Sir Hugo Swire (East Devon) (Con)]

9. What support his Department provides for the (a) study and (b) treatment of Lyme disease.

[The Minister for Care (Caroline Dinenage)]

The National Institute for Health Research is supporting the study of Lyme disease by researching markers that would offer a faster and more accurate diagnosis. Meanwhile, the National Institute for Health and Care Excellence has published clinical guidance for the diagnosis and treatment of the disease for healthcare professionals.

[Sir Hugo Swire]

Lyme disease is often misdiagnosed or diagnosed late, which results in widespread suffering such as joint pain, paralysis and brain damage. Will the Minister therefore join me in congratulating the charity Caudwell LymeCo, which has pledged £1 million in research funding, and will her Department commission research on a better test for the disease?

[Caroline Dinenage]

My right hon. Friend is absolutely right to raise this issue. We know that the outcome of Lyme disease depends on whether it is diagnosed and treated at an early stage. That is why my Department commissioned four separate independent systematic reviews of all the relevant literature on the diagnosis, treatment, transition and prevention of the disease, which were published in December 2017 and which assess the existing evidence for the research community, research funders and the public. We welcome all independent researchers who want to do more work on that basis.

[Rachael Maskell (York Central) (Lab/Co-op)]

My constituents have faced many challenges in relation to Lyme disease. They have had to go overseas to be tested and given a diagnosis. However, the NHS does not recognise those tests. What is the Minister doing about that?

[Caroline Dinenage]

Most people are diagnosed and treated successfully by GPs and recover uneventfully, but in a few cases people who are diagnosed late or are not treated adequately may develop significant complications. That is why the National Institute for Health Research welcomes applications for research funds.

[Mr Laurence Robertson (Tewkesbury) (Con)]

22. Earlier this month I visited a young lady in my constituency who was living a perfectly good life but was then struck down by Lyme disease. She has not left the House in over 12 months and is in terrible pain all the time. The NHS in this country did not find a diagnosis from her blood sample; it had to be sent to Germany to get the diagnosis. An awful lot more needs to be done to help these people.

[Caroline Dinenage]

My hon. Friend is absolutely right to raise this: we do need to do more in this space, and that is why we are investing over £1 billion a year in health research through the National Institute of Health Research.

[Nic Dakin (Scunthorpe) (Lab)]

What evaluation is being put in place to see how effective the 2018 NICE guidelines for clinicians on managing Lyme disease are in improving the treatment of this dreadful disease?

[Caroline Dinenage]

All NICE guidelines are permanently kept under review. If the research we are investing in throws new light on any issues, that will always be taken into consideration.

[Justin Madders (Ellesmere Port and Neston) (Lab)]

10. What assessment he has made of the implications for his Department’s policies of the conclusions of the “Clinically-led review of NHS access standards: interim report from the NHS national medical director”; and if he will make a statement.

--- Later in debate ---

[Barbara Keeley (Worsley and Eccles South) (Lab)]

There are still 2,295 patients who are autistic or who have learning disabilities in hospital in-patient settings, despite a Government pledge in 2012 that no one would be in inappropriate settings by 2014. In 2015, the Government said they would close up to 50% of these in-patient places, and they failed to meet that pledge, too, because of a lack of social care funding. Will the Secretary of State now commit to proper social care funding for this programme and renew the pledge to end the misery of these placements by 2022?

[The Minister for Care (Caroline Dinenage)]

The NHS long-term plan has made it clear that learning disability and autism are one of the key clinical pillars in its absolute priorities. This transforming care work is incredibly important. Where people need access to in-patient services for assessment and treatment of their needs, it has to be for as short a time as possible, it has to be as close to home as possible and it has to be with a very clear discharge plan in place.

[Kirstene Hair (Angus) (Con)]

T3. We all know that early intervention is vital for the most fatal mental health disorders: eating disorders. I warmly welcome how ambitious this Government have been to ensure that under-19s get seen as quickly as possible, and I encourage them to expand it. My constituents in Scotland do not have that, and they still have to wait up to 18 weeks to be seen. The Scottish Government refuse to see me, and they refuse to come in line with the UK Government. Will the Secretary of State assure me he will push this case next time he meets his counterpart in Scotland?

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[Lloyd Russell-Moyle (Brighton, Kemptown) (Lab/Co-op)]

T7. Possability People is a disability charity in my constituency that has operated consistently for the last 30 years. Some 85% of its funding comes from the clinical commissioning group, but on 12 March it received a letter saying that the funding would stop in April. That follows the CCG’s decision last year to stop all funding for the low-vision clinic in my constituency. From April onwards, disabled people will have to go to their GP to access these services, which will cost more for the health service. Will the Minister meet me to discuss how we can save money?

[Caroline Dinenage]

The hon. Gentleman is absolutely right to draw the House’s attention to how vital local community services are in supporting people and to say that we really do need to invest in them. Clearly, these matters of investment are for local areas, which is why we allow CCGs to make these decisions, but I am more than happy to meet him to discuss the matter.

[Daniel Kawczynski (Shrewsbury and Atcham) (Con)]

Will the Secretary of State give an evaluation of the “Future Fit” programme? We have secured more than £300 million for investment in our local hospital trust. What is his understanding of where the “Future Fit” programme has got to?

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[Caroline Dinenage]

The Government take this very seriously. The NHS long-term plan sets out priorities for the NHS, and deaths from respiratory disease is a key indicator and an absolute priority. However, it is only right that people who can afford to pay for their prescriptions, like me—I am an asthma sufferer and I can afford to do it—do so. Local areas have to decide those priorities. At the moment, 90% of prescriptions are free.

[Fiona Bruce (Congleton) (Con)]

Can Ministers outline the latest steps to support the children of alcohol-dependent parents? In the forthcoming alcohol strategies, will greater support be promoted for the families of alcoholics, who are often best placed to help to reduce alcohol harm in their loved ones?

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[Mr Adrian Bailey (West Bromwich West) (Lab/Co-op)]

In a debate on 24 January in this Chamber, many contributors outlined the dangers of using graded exercise therapy in treating ME. What conversations has the Department had with NICE on that issue before the proposed publication of the revised treatment guidelines in October 2020?

[Caroline Dinenage]

There are ongoing conversations. As the hon. Gentleman knows, NICE is updating existing clinical guidance on the diagnosis and management of ME and chronic fatigue syndrome. That guidance will be published in 2020.

[Julia Lopez (Hornchurch and Upminster) (Con)]

I met the Secretary of State to discuss my campaign for a new health centre in Hornchurch and I welcome his subsequent announcement that NHS trusts can apply for NHS property assets. Will my right hon. Friend let me know how and when they can make those applications and whether he will consider fast-tracking any bid we make, given how close we were to receiving capital funding?