Adult Community Services

Caroline Dinenage Excerpts

Wednesday 26th June 2019 Westminster Hall

[The Minister for Care (Caroline Dinenage)]

It is a great pleasure to serve under your stewardship, Mr Gapes. I thank the hon. Member for Bristol South (Karin Smyth) for securing this debate. She spoke passionately on behalf of her constituents. It is right to bring such concerns to this forum. She asked the questions that any good MP should ask, and she has the right concerns. She spoke strongly about valued local services that no one wants to see lost, such as her Healthier Together service, and said that she fears for their future. I hope that some of the things I shall say will allay her fears, but if I do not cover anything she mentioned, we shall write to her to give her as comprehensive a response as possible.

Community services play a vital role, but we have perhaps not emphasised them as much as we should have done in recent years and decades, so we must put that right. Effective community services mean that patients are treated where they are most comfortable—often their own home—and supported to manage their conditions and live independently. More widely, they are key to improving the patient experience. They provide preventative care and prevent people’s illnesses and ailments from getting worse. Crucially, they prevent reliance on the big acute hospitals.

The NHS long-term plan sets out our vision for community services. It highlights the need to move away from small, narrowly defined and often poorly co-ordinated community services to those which are more joined-up and operate over a larger footprint. It also encourages much longer commissioning times, to enable us to build the relationships that we want to continue to establish. Importantly, it will make it easier for patients to navigate the system without having to repeat their story multiple times, and will ensure that their care is delivered in a smoother, more timely manner. To help to deliver on that vision, as part of the extra investment in the NHS long-term plan, an extra £4.5 billion per year will be spent on primary medical and community health services by 2023-24.

That is why ideas such as this, from local areas such as Bristol, North Somerset and South Gloucestershire, which embed community services as a central component of their plan in a way that mirrors the vision of the NHS long-term plan, appear very attractive. By awarding all its adult community services in a single contract, we can see that the CCG is aiming to promote a cohesive, integrated approach, which will improve consistency and efficiency across its entire geography.

The CCG’s 10-year funding approach also reflects the NHS long-term plan and will enable transformative change, through the kind of long-term relationships we need, based around strong, collaborative partnerships across not only the health and care system, but also the third sector, which the hon. Lady mentioned and which plays such a crucial part in the delivery of some of our most vital community services. We think that the length of the contract will allow the local area to design its services not only for the current need, but to address the future needs of its population, while also giving greater certainty to the workforce.

Additionally, the plans contain key commitments on community services set out in the NHS long-term plan. These include delivering care through multidisciplinary teams, the deployment of rapid response teams and providing services in central hubs located in people’s communities, where they can get the holistic support that will enable them to stay healthy and well.

We think that all those things will ensure that patients receive timely, integrated and holistic care in their community, with a greater focus on treating the whole person rather than merely their condition. This approach will join everything together, so that people no longer slip through the gaps or get pushed from pillar to post or from A to B, and it will provide a one-stop shop where people have a named contact and a real integration of community, mental health and adult social care services and the third sector.

The hon. Lady spoke with great passion and knowledge about the importance of transparency and engagement when deciding service provision, something that of course I entirely agree with. At the same time, it is right that these decisions are made by local areas, such as CCGs, local authorities, sustainability and transformation partnerships or integrated care systems, because those people decide how services should be configured to meet the needs of their local area. When they do so, we have clear expectations of them: they must involve patients, carers and the public in decisions about the services they commission, and be clear and transparent about their decisions.

That could be where we appear to have a difference of opinion between how the hon. Lady feels that her CCG has communicated and the way the CCG feels that it has. I have spoken at length to the director of commissioning and the chief executive, who say that in this particular case they have made considerable efforts to meet those expectations. They report that they engaged with 500 local people, including health and care professionals and representatives from the third sector, and that patients and carers have been supported to engage with the process through a public reference group, which I know she mentioned.

Additionally, the CCG says that it has engaged with a range of organisations and partners from across the local system, including hospital and mental health trusts as well as local authorities, to better inform the contract process. Those organisations have met bidders for the contract to discuss service provision. The CCG says that that collaborative process will help the contract holders to build relationships and allow patients to receive integrated services, which is what we all want.

The CCG also says that it has taken steps to ensure a transparent process, including press releases, letters to stakeholders, engagement events and making key information available online. Additionally, the CCG reports that the procurement is being overseen by a programme board that includes patient and carer representatives.

The hon. Lady made the point that it might be premature to go out for tender while the NHS long-term plan’s proposals for amending procurement requirements are being considered. That is a very good point, but unfortunately considerations around legislative changes do not change the CCG’s duty to comply with current procurement law, nor do they change its duty to use its resources as efficiently and effectively as it can.

The CCG has agreed that if the legislation changes during the procurement process it will review and evaluate that process, but more widely, by law it must ensure that there is no gap in access to services. Its contracts for adult community services will expire in the coming years, and by law cannot be extended. The CCG has informed me that if the procurement was halted, it would create the risk that when the current contracts expired, local people would be left without vital community services, which the hon. Lady knows they rely on. Of course, that simply cannot happen.

The hon. Lady also rightly noted that we must ensure that contracts are given the necessary external support and scrutiny. To that end, NHS England’s and NHS Improvement’s integrated support and assurance process—for which we use another of those attractive acronyms, ISAP—provides a co-ordinated, consistent approach to reviewing complex contracts, which is intended to ensure that complex contracts are cost-effective, robust and in the interests of patients.

On 17 October, NHS England and NHS Improvement held an early engagement meeting with the CCG, where they discussed this contract under ISAP. Following that meeting, NHS England and NHS Improvement were assured of the need to have a single contract that runs for 10 years. A full ISAP process is triggered when a procurement is found to be sufficiently novel and complex. NHS England and NHS Improvement found that in this case these requirements were not met, meaning that the full ISAP process was not required. Instead, NHS England and NHS Improvement regional teams will provide assurance that is informed by ISAP principles, which will include ensuring that the contract provides value for money, that it is centred around patient care and, crucially, that some of the key parts of patient care that the hon. Lady spoke about are not lost. The regional teams must also jointly ensure that the correct processes are followed, and that any chosen provider has the capacity and capability to deliver the services set out in the contract. Importantly, the regional teams must then give further formal, joint approval before the CCG can award a contract.

With that in mind, scrutiny of how we award contracts for delivery of health services is clearly vital. We must be assured that due care is taken so that patient outcomes are absolutely first and foremost, and that services are organised and delivered with prudent financial planning. To that end, NHS England and NHS Improvement will continue to closely monitor this contracting process. I welcome the close attention that the hon. Lady has paid to this contract; I know she has looked at it very thoroughly and I am grateful that she has raised her concerns. We believe that the CCG’s approach in this case is right, but we will continue to engage in every way possible with all parties to help ensure its successful delivery.

Question put and agreed to.

Living with Dementia

Caroline Dinenage Excerpts

Tuesday 25th June 2019 Westminster Hall

[The Minister for Care (Caroline Dinenage)]

As ever, Mr Paisley, it is a great pleasure to serve under your stewardship. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, the hon. Member for Cambridge (Daniel Zeichner) for supporting her in doing so, and the Backbench Business Committee for allowing time for it. I also thank all the other Members who have taken part in the debate, and in some cases shared very personal journeys and stories about their family’s experiences with dementia and, indeed, some interesting and inspiring best practice from their constituencies—things that other areas can learn from.

I also thank the hon. Member for Oldham East and Saddleworth for her personal commitment and dedication to people living with dementia, both through her work on the all-party parliamentary group on dementia and in her constituency. She is so committed to making Oldham East and Saddleworth a really dementia-friendly place to live; she sets an excellent example of what we as Members of Parliament can do in our own communities, and I welcome her vision of making Westminster the first dementia-friendly Parliament. I will do everything I can to support her in that endeavour, because I know that her passion is driven by her experience of having a close family member living with dementia.

Other Members have spoken about their own experiences, and I have also had two very close family members living with dementia: my grandmother and my uncle, who passed away just before Christmas. I have experienced at first hand the impact that dementia has, both on the person who is living with it and those who love and care for them. Hon. Members from across the House have spoken about the importance of carers, and I have seen at first hand the impact that caring for my grandmother had on my mum—on her relationships, her professional life and her health and wellbeing. Those carers’ commitment should never be taken lightly. A dementia diagnosis is more than a diagnosis for that individual: it is a diagnosis for the whole family, their loved ones, their community and their workplace.

[Jim Shannon]

In my constituency, 1,152 people live with dementia. As the Minister rightly said, it affects a lot of families as well as the wider family circle. Has she given any consideration to respite care for those families to give them a break from the physical, emotional and mental pressure that they are under?

[Caroline Dinenage]

Respite care was one of the themes of the carers action plan that we published last year. SCIE is putting together guidance for local authorities on how they can best provide that crucial respite moment for those brilliant carers. [Interruption.]

A diagnosis is very much for an individual, but also for their families and loved ones and for their communities and workplaces. When those come together, it is possible to live well with dementia, as my hon. Friend the Member for Witney (Robert Courts) said. Such personal experiences make me passionate about my responsibilities as a Minister. The hon. Member for Halifax (Holly Lynch) challenged me to continue to push the Government to keep dementia as a priority, and I always will. I am proud of the Government’s commitment to deliver on the dementia challenge 2020 in full to make this the best country in the world to live for anyone with a dementia diagnosis.

The challenge aims to transform the lives of people with dementia, as well as their carers and their families, through better awareness, care and research. We have made significant progress as part of the challenge, but we know, as we have heard today, that there is still much more to do. We have already started our work on our strategy for the period beyond 2020. This is not something that finishes in 2020. It is simply the start of the next phase and we will publish our thoughts on it early next year.

One of the key successes of the challenge has been improved diagnosis. We are meeting our ambition, and today two thirds of people living with dementia receive a diagnosis, but we clearly still have some way to go. Of course, not everybody wants a diagnosis, but we know that a timely diagnosis enables a person with dementia to access the advice, information, care and support that can help them to live well with the condition and remain independent for as long as possible.

We are focusing on reducing the variation in local dementia diagnosis rates. There is a real geographical variation, and targeted support to identify and engage the areas most in need of assistance will really help. Reducing the gap in diagnosis rates will ensure that people with dementia have consistent access to a diagnosis wherever they are in the country. We also know that receiving good quality care improves the lives of people with dementia. Equipping our health and social care workforce with the skills that they need is therefore crucial to the quality of care for those living with dementia.

Since 2012—the hon. Member for Bradford South (Judith Cummins) mentioned this—1 million episodes of the tier 1 dementia awareness training have been completed by NHS staff, and more than 1 million care workers completed the care certificate, or common induction standards. We continue to work to meet our commitment that staff have the training appropriate to their role. We want to see more people doing the tier 2 training, which is much more robust, so we are exploring options to see how we can increase take-up for anyone who needs it.

[Dr Whitford]

Is there an audit of hospital environments? Just before I left to come here, my hospital was redesigned using coloured zones and imagery to help people with early dementia move around the hospital independently. Are there similar projects elsewhere?

[Caroline Dinenage]

That is an interesting question. I do not know the answer, but I would be keen to look into it to find out. We are looking to explore ways to encourage the take-up of tier 2 dementia training. I recently co-signed a letter to health and care organisations with the chief executives of Skills for Care and Health Education England to highlight the importance of dementia training and education, which is a really important part of our discussions.

We are also meeting our commitment on Government funding for dementia research of £60 million or more each year, to reach at least £300 million invested over the five years up to 2020. The figure is actually more than £60 million this year—it is £83.5 million. In addition, we have the UK Dementia Research Institute, which is funded to the tune of £290 million: £190 million from Government and £50 million each from the Alzheimer’s Society and Alzheimer’s Research UK.

[Patricia Gibson]

I thank the Minister for giving way and apologise for the earlier interruption; I am glad it did not put her off her stride.

Much of what we have discussed today—the issues around this illness—are devolved to Scotland, but I want to press her on an issue that is not devolved: legal protection for older people with dementia. What measures can be put in place for financial institutions to have a legal duty of care to look after those people? In the debate we have focused on the practicalities of care, which is important, but we have to think about how we protect people in law in financial terms.

[Caroline Dinenage]

I thank the hon. Lady for that intervention. I am sure the slight disturbance caused by her mobile created a welcome distraction for everybody from my speech. I took note of what she said in her speech and she makes an excellent point about protections.

To go back to research funding, the incredible dementia discovery fund, which other Members have mentioned, was launched by David Cameron in 2015. It is the world’s largest venture fund aimed at a single disease area that looks to develop novel pre-clinical therapies. Our continued commitment to support research has also seen increasing numbers of people involved in the joint dementia research programme, with 20,000 people taking part in dementia research studies. To answer the question asked by the hon. Member for Vale of Clwyd (Chris Ruane), I am happy to meet and discuss any other research that comes forward.

Ahead of developing new treatments, we need to be able to support people to live well with dementia in their communities. The Dementia Friends programme, which a lot of people have mentioned—I am also a Dementia Friends champion—is a great example of increasing public awareness. Through the dementia-friendly communities programme—365 so far this year in England— we are making society more inclusive. We are supporting the National Dementia Action Alliance’s work to promote dementia-friendly hospitals across England through its charter to improve the care that people receive.

My hon. Friend the Member for Witney asked me about writing to the Department for Work and Pensions about improving its guidance to employers, which I will commit to do. We know that careful reforms are required to ensure that the social care system is prepared for the challenges of an ageing society, including for those with dementia. Many Members, including the hon. Member for Cambridge, mentioned adult social care funding. Many Members also talked about cuts to local authorities, but over the past year we have given councils access to an additional £10 billion: an 8% real-terms increase.

However, the fact that we are still talking about the social care system being on the point of crisis, at a tipping point or under huge pressure, shows the scale of the problem. That is why we have committed to publishing the adult social care Green Paper at the earliest opportunity. I share everybody’s frustration about the delays, but it will set out ideas for an element of risk pooling to save individuals from catastrophic costs, which some have spoken about today. We are committed to ensuring that everybody has access to the care and support they need. More short-term social care funding will be agreed alongside the rest of the local government settlement in the forthcoming spending review.

The NHS long-term plan sets out a 10-year strategy, outlining how the NHS will spend the £33.9 billion cash terms annual increase that will go into the NHS budget. We now know that around a third of dementia cases are preventable. Since 2018, every person attending an NHS health check in England—the hon. Member for Burnley (Julie Cooper) mentioned prevention—receives information about how to reduce the risk of developing dementia. It includes advice on smoking, safe levels of alcohol and being physically active. Between 2013 and 2018, nearly 7 million people attended health checks.

My hon. Friend the Member for Chichester (Gillian Keegan) mentioned Careline in her constituency. There are lots of innovative ways that technology can improve the lives of people with dementia. Jelly Drops are an ingenious way to tackle dehydration using sweet-like capsules. My local county council in Hampshire uses existing technology such as Amazon and wearable technology to help people maintain their independence, stay safe and combat isolation. All those achievements, brought together in the dementia challenge 2020, help to improve the lives of people with dementia, but we know that more needs to be done. We are committed to continuing to improve the lives of people with dementia, and of their families and carers.

[Ian Paisley (in the Chair)]

I call Debbie Abrahams to wind up.

Oral Answers to Questions

Caroline Dinenage Excerpts

Tuesday 18th June 2019 Commons Chamber

[Emma Dent Coad (Kensington) (Lab)]

1. How many care homes are rated good and outstanding for safety.

[The Minister for Care (Caroline Dinenage)]

No compromise can be made on the safety of care homes, and that is why the Government introduced robust inspection regimes led by the Care Quality Commission. Latest figures from 3 June show that 80% of care homes have been rated good or outstanding for safety, with 84% of adult social care providers rated as good or outstanding overall.

[Emma Dent Coad]

I draw the Minister’s attention to one example of a care home run by a private provider: Ellesmere House, which offers residential care for dementia sufferers. In February 2015, there was a serious safeguarding incident leading to the death of a resident after an incident with another resident, yet its latest CQC report underlines continued failures in management. Is the Minister confident that we have a generation of providers with the skills, training and facilities needed to keep dementia sufferers safe and well cared for?

[Caroline Dinenage]

I thank the hon. Lady for that question. It is of course incredibly concerning when we hear cases of abuse or neglect in care homes. That is why the Government asked the CQC to inspect them in the first place and why we have put in place training through Skills for Care and given councils access to a lot more funding to help support them. However, abuse and neglect of any kind must not be tolerated.

[Andrew Bridgen (North West Leicestershire) (Con)]

I welcome the fact that the latest report from the Care Quality Commission indicates that four out of five adult social care services in England are rated either good or outstanding, but there is no room for complacency. Will the Minister expand on how she will ensure that that becomes five out of five?

[Caroline Dinenage]

My hon. Friend is absolutely right to highlight that four out of five care homes are rated good or outstanding. That is largely down to the more than 1.5 million adult social care professionals, who work with great professionalism and integrity. We drive up quality by supporting them better and ensuring that we can recruit more people into this incredible profession. We have had a very important adult social care recruitment campaign called, “Every day is different”, which looks to attract people with the right values into the sector to drive up quality and provide robust social care.

[Dr Rosena Allin-Khan (Tooting) (Lab)]

I know from my family’s personal experience that just because care homes have a CQC rating of good does not mean that there are not dangerous and serious issues lurking beneath the surface that impact patient safety and care. Will the Minister outline today what the Government are doing to look into reports from CQC homes that are rated good?

[Caroline Dinenage]

The hon. Lady has often spoken very movingly in the House about her personal experiences, and she is absolutely right: abuse of vulnerable people is absolutely abhorrent. We are very determined to stop it, and we want to prevent it from happening in the first place through the tough inspection regime. We want to shut down poor-quality homes and, most importantly, we have made sure that across the country, police, councils and the NHS work together to help to protect people in the long term.

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

The integrity of CQC ratings was dealt a mortal blow by the uncovering of abuse at Whorlton Hall by BBC “Panorama”. Watching the abuse on that programme is made worse by the knowledge that the abuse may have started five years ago. The unpublished inspection report from August 2015 described allegations of assaults on patients, the undocumented use of a seclusion room and the use of rapid tranquilisation not backed by an organisation policy. I do not have any confidence that the review called by the CQC will uncover the truth behind that abuse. Will the Minister agree to set up an inquiry into this matter, so that we can establish whether the care regulator is fit for purpose?

[Caroline Dinenage]

The hon. Lady is absolutely right: abuse of any kind must not be tolerated, and we have heard horrific accounts of abuse that must be tackled. That is why in May, we announced much stronger commissioning oversight arrangements, where people are put in place out of area. Local commissioners must visit regularly. The CQC has commissioned two independent reviews, and the findings and recommendations of both will be published. The point is that opportunities to intervene have been missed, and we must be open and transparent in getting to the bottom of what happened.

[James Cartlidge (South Suffolk) (Con)]

2. What steps he is taking to increase NHS access to new technology.

--- Later in debate ---

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

9. What steps he is taking to ensure that people can access Changing Places facilities when they use NHS services.

[The Minister for Care (Caroline Dinenage)]

Last year, I announced £2 million funding for NHS trusts in England to install Changing Places facilities in hospitals; this is now available for trusts to bid for. We estimate that 250,000 people in the UK cannot use standard accessible toilets, and the fund could help to install well over 100 more Changing Places facilities.

[Dr Johnson]

Many of the disabled children who use Changing Places facilities also have a life-limiting or life-threatening condition. I welcome the increase in Changing Places facilities, but in this national Children’s Hospice Week could I ask my hon. Friend to go further in protecting these vulnerable children by increasing the children’s hospice grants to £25 million to give them the financial security they need?

[Caroline Dinenage]

I am really pleased that my hon. Friend has mentioned that it is Children’s Hospice Week. It is a great opportunity to pay tribute to the incredible work that children’s hospices do up and down the country, supporting some of our most poorly children and their families. I thank my hon. Friend for the work that she does on the all-party parliamentary group for children who need palliative care. The short answer to her question is yes; the NHS will match fund CCGs that increase their investment in children’s palliative care, including hospices, by up to £7 million. That is increasing support to a total of £25 million a year by 2023-24.

[Nic Dakin (Scunthorpe) (Lab)]

There are only about 40 Changing Places facilities in the NHS at the moment. I congratulate the Minister on the work she is doing on this, but will she continue to work with campaigners like Lorna Fillingham in my constituency to make sure that it not only happens quickly and on a timely basis but that we build on it in the future?

[Caroline Dinenage]

I am grateful to the hon. Gentleman because it was he who introduced me to Lorna Fillingham and the amazing Changing Places campaigners in the first place. It is really down to their incredible work that we have seen the growth of this very important issue. There are about 38 Changing Places facilities on NHS England estates at the moment, but the £2 million pot will definitely help to improve that number significantly.

[Mr Philip Dunne (Ludlow) (Con)]

10. What steps he is taking to improve the retention of NHS staff.

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

The Care Act 2014 gives councils a responsibility to provide residents with a choice of quality care options in a local area. More broadly, we are backing up councils with increased funding. Over the last three years, we have increased funding in real terms by 8%. That has given councils access to about £10 billion to help ensure that there is provision in local areas.

[Mr Philip Hollobone (Kettering) (Con)]

T7. Will the Secretary of State assure my constituents in Kettering that taking advantage of the local government reorganisation in the county to establish a combined health and social care pilot is one of his Department’s very top priorities?

--- Later in debate ---

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

T6. In York, it has taken 46 weeks for children and young people to commence the diagnosis process for autism—and demand and the number of referrals is going up. It takes a further 12 months, once there is a positive diagnosis, for parents even to access the SEND—special educational needs and disability—course. Precisely what service improvements can families expect to see in the next 12 months, and how will they be achieved?

[Caroline Dinenage]

The hon. Lady is absolutely right to draw attention to this issue. We are very concerned about the diagnosis times, which is why we are reviewing our autism strategy this year and are extending it to include children, whereas before it catered only for adults. We want to ensure it remains fit for purpose. We have launched a national call for evidence and have already received in excess of 1,000 responses.

[Jeremy Lefroy (Stafford) (Con)]

Patient safety in the NHS depends on compassionate care training and staffing levels, but it also depends on patient safety systems. What progress is the national health service making towards implementing those systems in every place where patients are cared for?

[Caroline Dinenage]

Patient safety, as my hon. Friend suggests, remains an absolutely key priority for the NHS. NHS Improvement and NHS England are developing a national patient safety strategy, which will sit alongside the NHS long-term plan. It will be published this summer and will build on existing work to provide a coherent framework that the whole NHS can recognise and support.

[Jo Swinson (East Dunbartonshire) (LD)]

T8. There are fears that NHS medical data could be on the table as part of a desperate post-Brexit trade deal with the US on digital services, where patient data would be mined by companies to develop medical technology that would then be sold back to the NHS. What guarantees can the Secretary of State give that private companies will not be profiteering from NHS assets in that way?

--- Later in debate ---

[Kevin Hollinrake (Thirsk and Malton) (Con)]

Will the Secretary of State support one of the key recommendations of the joint report from the Health and Social Care Committee and the Housing, Communities and Local Government Committee into the future funding of social care, which is for a German-style system of social insurance?

[Caroline Dinenage]

Absolutely. We are very keen to look at the Select Committees’ recommendations and the contributions of all key stakeholders. We are committed to ensuring that everyone has access to the care and support we need. The Green Paper will include ideas to protect people from high and unpredictable care costs.

[Stephen Lloyd (Eastbourne) (Ind)]

T9. Over the weekend, I was contacted by a number of parents of severely disabled children with very distressing news. Up until now they have been receiving five pads a day, because their children, grown up or otherwise, are very severely disabled. However, they have been told by the clinical commissioning group that that has been cut to three. This is incredibly distressing. Some of the parents are on universal credit and the additional cost they will have to pay themselves will be £80 a month. That is unacceptable. Will the Secretary of State agree to meet me and representatives of my constituents, the parents of these very disabled children from Eastbourne, so that we can try to sort this out before it really gets out of hand?

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.

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.

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]

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

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.

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[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]