Transforming Care Programme

Caroline Dinenage Excerpts

Thursday 5th July 2018 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this really important debate. I thank him for his continuing hard work and commitment, both within this place and outside, in championing the interests of people with a learning disability. As a Minister in the coalition, he was a driving force on this issue, particularly following the Winterbourne View scandal.

On a personal note, I also thank the right hon. Gentleman for the work that he did in commissioning an investigation into the tragedies at Gosport War Memorial Hospital. As a Health Minister, I have had to recuse myself from speaking about that because I am also the local Member of Parliament, but I want to put on record my gratitude to him for the work that he did. In many ways, there are parallels with what we are talking about today: families whose voices have not been heard; families who do not necessarily feel that they have been listened to. We all have to look at how we can learn the lessons from cases like Winterbourne View and how we stop other families suffering in the same way.

I thank other Members from across the House for participating in the debate. I am so sorry that there are not more of them, because this is a really important issue. I have met many of the Members here today to discuss their concerns. I will always be available to do that at another point if they would wish me to do so. They have asked me lots of questions. I will do my best to answer as many of them as I can in the time that you have permitted me, Madam Deputy Speaker. If I fail to do that, I will write to the Members concerned.

[Madam Deputy Speaker (Dame Eleanor Laing)]

For the sake of clarity, I should say to the Minister that I cannot limit her time, nor would I try to. In the current circumstances, she actually has an enormous amount of time, but I know that she will not try the patience of the House. I agree with her that a great many important questions have been raised, and I am sure she will wish, assiduously as ever, to answer them all. I will not interfere with the time that it takes her to do so.

[Caroline Dinenage]

That truly is good news, Madam Deputy Speaker. I will try not to go on, as my husband tells me I have a propensity to do. I will answer as many questions as I can. I may have misinterpreted some of them, and I may not be able to read the copious notes I have written, but I will write to Members if I do not get to their points.

We can all agree that people with a learning disability and/or autism have the right to the same opportunities as everyone else to live satisfying and valued lives and to be treated with dignity and respect; that goes for their families, too. As good and as necessary as in-patient care can be—we have heard examples of how it has changed people’s lives—we know that people with a learning disability should have the opportunity to live at home, to develop and maintain relationships and to get the support they need to live healthy, safe and rewarding lives in their own local communities.

The mandate to NHS England—the list of “must dos” for the NHS—set by the Government every year includes the following clear objective:

“We expect NHS England to strive to reduce the health gap between people with mental health problems, learning disabilities and autism and the population as a whole, and support them to live full, healthy and independent lives.”

The transforming care programme is at the heart of that commitment. It is a partnership across local government and the NHS to transform the care, support and treatment available to enable people with a learning disability, autism or both to lead the lives of their choosing with and in their local community.

Through the national transformation plan, “Building the Right Support”, we have an ambitious and comprehensive plan to bring councils and clinical commissioning groups together in transforming care partnerships to plan and provide services across their areas; to use funding in new ways, including through pooling budgets, which I will talk about in a moment; and to ensure that people and their families have a clear idea of what they should expect from those agencies through the national service model. Key to all that has been building the right support in the community so that people do not need to go to hospital in the first place and those who are already there can move out.

Members have raised concerns today about the progress made under the transforming care programme. I can reassure them that progress continues to be made, but I will commit to take forward most seriously all the concerns raised today. The number of in-patients continues to decrease, and it is down to 2,400. NHS England has been clear that it is fully committed to meeting the ambition to reduce the number of in-patients by at least 35% by next March. It has talked about the intention to close around 900 learning disability beds. I entirely take the point made by the hon. Member for Dulwich and West Norwood (Helen Hayes) that focusing on the number of beds misses the point, and that it must be about ensuring that community provision and support are available to enable people to make that move, rather than the fact that beds are closing.

[Norman Lamb]

I appreciate the Minister being willing to write to us after the debate with anything she is not able to cover. Does she understand the concern that a headlong rush to meet the target because we are getting close to the deadline without proper arrangements in place could be disastrous for individuals? If the target is not achieved, that is better than a complete failure, with readmissions after failed discharges. The focus on detail in every case is critical.

[Caroline Dinenage]

I completely agree with the right hon. Gentleman. I do not want to have concerns about safe discharge, and that is why we look at that in care and treatment reviews. More than 7,000 of those reviews have been carried out, to reduce the time that people stay in hospital and improve the quality of care they receive while in hospital. Essentially, they are a step towards ensuring that community provision is available before people are allowed to leave hospital. The latest data show that the proportion of in-patients reported as never having had a care and treatment review was 8%, down from 47% in January 2016.

[Norman Lamb]

It should be 0%.

[Caroline Dinenage]

Absolutely, it should be 0%. As the right hon. Gentleman knows, that is what we are working towards.

[Dame Cheryl Gillan]

I appreciate that this is quite a complex area, but I have looked at some of the transition times. Dimensions—I mentioned it earlier—has estimated that its average transition time per patient is 12.5 months, which I believe is below the usual transition time. Does the Minister feel that this length of time will inhibit her from reaching her targets in 2019? Is there anything we can do to reduce the time, or does that length of time need to be taken?

[Caroline Dinenage]

My right hon. Friend makes an excellent point. NHS England says it is confident of hitting these targets and it will be doing all it can to ensure that that happens, but that must not be at the cost of treating people with the right levels of care or of having the right provision in place. This is also about keeping people out of the hospital setting in the first place.

The number of people receiving community or pre-admission care, education and treatment reviews also continues to improve, with 42% more undertaken in 2017-18 than in the previous year, of which 79% led to a decision not to admit somebody to in-patient care.

[Dame Cheryl Gillan]

I do not know whether the Minister will accept this, but I would have thought that everybody involved in this debate actually preferred us not to aim for a target that might not be reachable, because it is the quality of the outcomes and successful transitions that we are looking for. Will she be flexible enough to say, on looking at this again, that if we cannot achieve the targets by 2019, she will allow the timeframe to drop out of the picture? It is more important to have a successful transition, with the right length of time for somebody to transition, than to hit what might be an unattainable target.

--- Later in debate ---

[Caroline Dinenage]

I agree with my right hon. Friend that there is absolutely no point in having arbitrary targets that do not actually deliver the quality we are aiming for. As we all know from political history, targets for the sake of it have not always necessarily worked out in the way intended.

It is worth emphasising that this is a really special programme for people with very complex needs who require a very particular type of support. They also need to have their care reviewed and to have a bespoke package put in place, tailored to their needs, to allow them to live in the community. There is no one single intervention and no template for what care is needed because every person is different.

[Norman Lamb]

Will the Minister give way?

[Caroline Dinenage]

If I may make a little progress, I will definitely answer the right hon. Gentleman’s questions a bit later.

Care must be personalised, and it must be enduring. This can never be a case of rolling out a particular model of care across the country or seen as kicking off some kind of universal service.

To further accelerate discharge and the community service necessary to provide it, NHS England has transferred £50 million to clinical commissioning groups that are closing hospital beds so that they can invest in community alternatives. In addition, between 2015 and the end of the programme, NHS England will have invested over £50 million in transformation funding to support transforming care partnerships in putting in place the critical components of community support. This support includes community forensic teams, crisis prevention teams and teams focused on supporting children in the community.

Additionally, the Department of Health and Social Care has provided capital grants of over £23 million, which has been spent on housing to support people to return to live in the community or to prevent an admission to hospital. NHS England has a pipeline of further investments that it plans to deliver over the next year to support housing projects, to accelerate bed decommissioning and discharges and, most specifically and importantly, to develop community teams.

Members have expressed concern that once the transforming care programme ends in March 2019, action to support those with a learning disability and the most complex needs will also end, but I stress emphatically that that is not the case. NHS organisations and local authorities have come together to build on existing practice, and they have engaged with families and organisations to develop innovative plans to suit their areas. That must not stop. We are closing those beds permanently, and ensuring good-quality community provision is more important than ever. We should be crystal clear that the principles of building the right support will endure beyond March 2019. The philosophy is to change the way that we support people with learning disabilities for good.

[Norman Lamb]

rose—

[Caroline Dinenage]

Perhaps I can make a bit of progress and then I will come back to the right hon. Gentleman. We are not moving people from a hospital, where their outcomes are poor, into the community, just for them to be replaced in hospital by others. The transformation must be permanent, and we must consider what central support local areas need to ensure that that happens.

Hon. Members have been tempting me to talk about what will happen beyond March 2019, and to give a commitment on how the future of transforming care will look beyond that point. All delivery partners share a commitment to support the progress made by local partnerships to transform the choices available for local people, and to ensure that they are supported to lead fuller and more independent lives in their local communities. Plans are currently under way, and we will provide hon. Members with further updates once they have been finalised.

Transforming care is not the only area in which we seek to support those with a learning disability, and we are driving work to improve health and care outcomes across the board. It is an uncomfortable truth that mortality rates for people with a learning disability can be a measure of how well their care needs are being met. Following the publication of the report “Confidential Inquiry into premature deaths of people with learning disabilities” in 2013, we know that those with a learning disability die much earlier than those without, and too often for completely avoidable reasons. That is unforgivable.

In order to tackle that issue, in 2015 we established the learning disabilities mortality review programme, which requires consistent, local scrutiny across England into the deaths of anyone with a learning disability, so that action can be taken based on those findings. Like me, hon. Members will have been deeply concerned by the recent report from the University of Bristol, which leads that programme. The report highlights the persistence of inequalities faced by people with learning disabilities in their health and care. People with learning disabilities are still dying prematurely, and I was particularly alarmed and distressed to note that neglect, abuse, delays in treatment, and gaps in service provision played a part in one in eight of the deaths reviewed, which is unacceptable. The situation described in the report must change, and the Government will soon respond to its national recommendations in full. I am pleased, however, that we are not waiting for that publication to ensure that action is taken, and significant remedial actions are already under way.

I agree with the right hon. Gentleman that as well as implementation we must embed change and ensure that we never revert back—that is key and something I am determined to focus on. We need a relentless focus on improvement, and I am convinced that training is a key part of that. Local commissioners must use that learning and take appropriate remedial action in their own areas.

The NHS improvement learning disability standards published in June specify that an NHS trust should measure the service it provides against clearly defined standards, so as to identify improvements. We will collect information on every trust centrally, to monitor how well the needs of people with learning disabilities are being met.

Hon. Members mentioned workforce and training, and on 9 May we announced a £10 million fund for incentives for postgraduate students to go on to work in the fields of mental health and learning disabilities, as well as for those who go on to work in community nursing roles. We are considering the most effective way to implement an incentive scheme. Our response to the LeDeR report will address its clear recommendations on workforce training.

The right hon. Gentleman spoke about how we improve data. Clearly, with monthly data published on progress we are aiming for transparency. NHS Digital is working with the transforming care partnerships to make sure that we have high-quality data. The aim is for the mental health services dataset to be the main dataset in the future.

I was pleased that Members spoke with positivity about some of the outcomes for their constituents, albeit in some cases way too late. I am very grateful to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) for talking about some of the transformational results of the work so far. We clearly need to see more of it. The right hon. Member for North Norfolk talked about what an incredible difference the Shared Lives scheme can make. My self-appointed best friend, an adult from my constituency with learning disabilities who sadly passed away last year, lived in a Shared Lives home. I saw what an incredible relationship she had with the family she lived with.

[Norman Lamb]

I am very grateful to the Minister for giving way. On that specific point, she will probably be aware that the development of Shared Lives is quite variable around the country. There are some regions where it has developed quite well and other regions where there is virtually nothing. The Government could give more resource to expand the programme, because that is the way that we really change lives, getting people out of institutions and giving them a fulfilling life.

[Caroline Dinenage]

I am very glad the right hon. Gentleman said that because as part of the Department of Health and Social Care legacy scheme we are providing £70,000 in this year for that sort of intermediate and reablement provision which Share Lives would come under. We should definitely be investing more in that.

I take very seriously the right hon. Gentleman’s point on conflicts of interest. We have to look at that very carefully, because it might imply that any clinician would be conflicted in making a clinical decision because they are employed by a trust. Providers are monitored by the CQC and doctors are of course subject to extremely rigorous professional registration, but I take what he says very seriously and I will look more closely at his concerns. I am very happy to meet him to discuss this issue further if he would like me to do so.

The right hon. Gentleman spoke about pooling resources. There are now formal mechanisms for that to take place, such as section 75 and the ways in which CCGs and local authorities can work together. That is the point of having transforming care partnerships’ commissioners working together.

The right hon. Gentleman spoke about the exclusion of families from decisions. That really upsets me and it really should not happen. There are legal duties, under the Mental Capacity Act 2005 and the Mental Health Act 2007, to have independent mental health advocates. I would be very keen to speak to him further about what more we can do to make sure that the legislation is having the desired effect.

My right hon. Friend the Member for Chesham and Amersham knows I am a massive fan of hers. She has probably done more to further the cause of individuals with autism and their families than anybody else in the history of this building. She spoke with great knowledge about autism and was absolutely right to point out that transforming care is not only about learning disabilities but people with autism. In Think Autism, the adult autism strategy, we set a programme of action across Government to support autistic people to lead fulfilling and independent lives where possible. We have recently refreshed the governance arrangements that will achieve greater traction and delivery of the required outcomes, better supporting autistic people to live healthy independent lives and participate in their local communities.

My right hon. Friend spoke about autism care pathways. NHS England is developing a framework of adult community mental health services which will include care for adults with comorbid neurodevelopmental disorders and/or learning disabilities, rather than the pathways planned and set out in the “Five Year Forward View” implementation plan. NHS England’s care pathway programme has evolved to take account of the current operational context and expert service user advice. The pathway is linear about discrete episodes of care, so is more appropriate for specific interventions undertaken by specialist teams.

My right hon. Friend spoke about the barriers that autistic people face in accessing mental health services. Trusts should already be ensuring that services are accessible to people with autism and that they have made reasonable adjustments to care pathways to ensure that people with learning disabilities and autism can access the highly personalised care and achieve the equality of outcome that we all want.

The hon. Member for Dulwich and West Norwood spoke about her constituent, Matthew Garnett. It was a great pleasure to meet the hon. Lady and Matthew’s mum, Isabelle, recently. I was very shocked to hear of Matthew’s experience and deeply upset to see the pictures of him at his lowest ebb, when he was suffering from the neglect that she spoke of. It was very distressing. I am pleased that the NHS is learning from this. The Marsh review into Matthew’s care has helped to shape a much more focused approach to the needs of children and young people who are at risk of slipping into the sort of crisis that she mentioned. The operational delivery group allows stakeholders, including young people, to shape policy.

[Helen Hayes]

The right hon. Member for North Norfolk (Norman Lamb) raised the issue of St Andrew’s in Northampton having been able to expand so significantly with the benefit of NHS funding—I cannot remember the exact percentage, but the percentage of funding that comes from the NHS for St Andrew’s is up in the eighties and nineties. Does she agree that this is not the right model and will she commit to looking at limiting the further expansion of private in-patient beds, when they are not what is needed for treating young people with autism and learning disability?

[Caroline Dinenage]

We can certainly look at what the hon. Lady suggests. I am pleased that the operational delivery group, which I just mentioned, allows stakeholders to shape policy and it is really good news that Isabelle Garnett, Matthew’s mum, is a major contributor to this and liaises with NHS England directly on its programme around children either in hospital or at risk of being admitted.

The right hon. Member for North Norfolk asked why the evaluation was cancelled. As he knows, an evaluation sponsored by NHS England is already under way, and the Department, having invited bids for its evaluation, was not satisfied that the proposals received were what was needed. That does not mean that we are not absolutely determined to critically review progress, particularly working with stakeholders and users.

The right hon. Gentleman spoke about the “No voice unheard, no right ignored” Green Paper. Although I am always ready to bow to his incredible knowledge in this field, it is not entirely true to say that the Green Paper went unheeded. Some of the recommendations were overtaken by changes in Government policy, and indeed, in Governments, but we have taken forward work such as the named social worker pilot and a review of the Mental Health Act. We have asked Professor Sir Simon Wessely, the chair of the independent review, to listen to people with direct experience of the Mental Health Act and this, of course, includes autistic people and their carers. He published his interim report to update the Government on his progress, which sets out specific issues that we must explore to look at how we can improve the scope of the Act.

The hon. Member for Dulwich and West Norwood also spoke about training for teachers in autism. The Department for Education has funded training and support for teachers through the Autism Education Trust. That is in early years, schools and further education, and so far, 175,000 staff have been trained.

[Dame Cheryl Gillan]

Does my hon. Friend also welcome the fact that from September this year in initial teacher training, the possibility of having a module on autism will now be included? It is something that we worked very hard for and the Department for Education responded. This is about not just the historical training, which is so important, but the future training that is coming on-stream from September this year.

[Caroline Dinenage]

My right hon. Friend is absolutely right to raise that, and I am sure that its introduction is in no small part down to her incredible work.

Society has failed people with learning disabilities for too many years. Our aim is to put things right. People are at the heart of the transforming care delivery programme. The priority is to provide safe, high-quality care that is appropriate for everyone. We will continue to work with our partners to ensure that people with learning disabilities have the opportunity to live as full and independent lives as possible.

[Norman Lamb]

I think I can safely say that the debate this afternoon has reflected quality rather than quantity. I am not referring to my own contribution, of course. We have focused on an important issue, and I am grateful that the Minister has treated it with the seriousness it deserves. I want quickly to highlight the key things that I think she needs to focus on, and I would be delighted to meet her to discuss them, perhaps together with the key organisations that I referred to at the start.

The Minister did not particularly focus on children in her response. If we are to have a system that works in a sustainable way in the long term, keeping children out of institutions will be key to solving the problem, particularly given that the numbers have doubled in the past few years and that we are going in the wrong direction. I particularly commend to her the brilliantly led Starfish programme in Norfolk as an exemplar of what can be done to keep people out of institutions.

On workforce training, I was pleased to hear about the money—£10 million, I think—for postgrads, but we also need training for the frontline staff in community settings who make the return to the community possible. A really important point was made about Alderwood and the experience of the constituents of the hon. Member for Dulwich and West Norwood (Helen Hayes). I also talked about Fauzia in this context. Training is needed in how autism affects individuals. It is not just about training in autism generally. Understanding the impact on an individual is what is so important, as is wider community training.

The Minister said that mechanisms were now in place to shift money across. What I do not understand is why that does not appear to be working effectively enough. If it is there, why is it not happening routinely? Why cannot the money just shift to a local authority to facilitate a much-needed community place? I am reassured that the work will continue after March next year, but it needs a national programme. I am afraid that it cannot just be left to localities. We know that there are some great places around the country doing amazing work, but others are falling well behind. There needs to be an inspiring national drive and the sense of an imperative that things have to change, wherever people live.

On the cross-departmental work and the taskforce to which the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) referred, we must recognise the importance of employment opportunities. So many people can work and can be paid in work, and that of course relieves the burden on the statutory services. Understanding that, and recognising that housing plays a vital part in this—

[Caroline Dinenage]

Will the right hon. Gentleman give way?

[Norman Lamb]

Am I allowed to give way, Madam Deputy Speaker? I am coming to the end of my response very soon—

[Madam Deputy Speaker (Dame Eleanor Laing)]

Order. Technically, no. The right hon. Gentleman has a strict two minutes to sum up at the end. However, I recognise that really important issues are being discussed here, and the Minister clearly has something to add. I am not creating a precedent here, but I am, unusually, allowing her to intervene.

[Caroline Dinenage]

I am grateful to you, Madam Deputy Speaker. My lack of understanding of the rules is clearly shining through quite beautifully here. I completely forgot to say earlier that we have an inter-ministerial group on disability in society which met for the first time yesterday, and I hope that it will go some way towards achieving some of the improvements that the right hon. Gentleman wants to see.