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Support for Life-shortening Conditions — [Andrew Percy in the Chair]

Part of the debate – in Westminster Hall at 10:38 am on 7th June 2016.

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Photo of Alistair Burt Alistair Burt The Minister of State, Department of Health 10:38 am, 7th June 2016

It is a pleasure to serve under your chairmanship, Mr Percy. I am sure we have all found the debate that you have conducted enlightening, interesting and extremely collaborative. I congratulate my hon. Friend Stuart Andrew on securing it. He has a long history of championing the children’s hospice sector as a fundraiser for Martin House and has been at the forefront of efforts in Parliament to publicise the needs of children with life-limiting conditions. I thank him for that, as others have done.

I apologise for the absence of the Under-Secretary of State for Health, my hon. Friend Jane Ellison, in whose portfolio this subject normally sits. She is overcommitted and trying to be in two places at the one time, so I am delighted to have the chance to respond to the debate. In a lengthy and varied ministerial career I have had the pleasure most of the time of being in a position where I can work with the House rather than deal with confrontational situations. Occasionally politics intervenes, but most of the time I have had the opportunity to do what I am going to do this morning, and I appreciate the way in which the debate has been handled and dealt with.

I shall briefly pick out some of the points made in individual speeches. With his usual courtesy and kindness, Jim Shannon told some personal stories and made an important point about sharing experience. He also helped us out with some information from Northern Ireland, as he so often does. My hon. Friend Rebecca Harris spoke of the inspiration of people such as Lucy, whom I shall quote in a moment. She made several points about transition and the need for people to have a voice. Angela Crawley and others raised the issue of mobility, which I shall address in a moment.

My hon. Friend Antoinette Sandbach is very much involved in these issues, and I am pleased that she talked about carers during Carers Week. There is still time for carers who are listening to get involved in the call for evidence on the new carers strategy. On the back of this debate, some information from carers for those with children with life-shortening illnesses would be particularly welcome. If carers could submit their information—they have until the end of June—that would be great. My hon. Friend also spoke about the need for counselling and issues relating to the end of life.

My hon. Friend Jason McCartney gave us moving stories about lack of sleep and illustrated the sort of lives carers lead when looking after their children. That personal insight really brings it home, as do those of other colleagues. I appreciated the interventions made by my hon. Friend Caroline Ansell and other colleagues.

Of the two Front-Bench spokespersons, I know Barbara Keeley well and, with her background in caring, her contributions are always to be listened to. She touched on several issues, including data and the funding of short breaks. I shall come to them all. I have not had the pleasure of listening to Kirsty Blackman before, as our portfolios have not crossed, but I really appreciated how she approached the subject, and particularly what she said about our being in uncharted territory. That is the truth.

A generation ago, the Minister in my position would probably not have been having this debate, or it would have been very different. Now, because of advances in medical science, we are working with children and families with whom we would not previously have been working. That gives rise to a whole series of new issues for all of us, and to a certain extent we are all feeling our way. The financial pressures are obvious, whatever the Government—whether it is devolved or in Westminster—but new work is being done all the time to tie up the different elements and agencies that handle packages of care. The hon. Member for Aberdeen North was particularly good on that, and I appreciated what she said. We can always learn from those around us.

I picked up in the debate issues such as data, social care, short breaks, mobility, transition and integration, about which I shall say a little in the course of my remarks. The hon. Member for Worsley and Eccles South read out a quote from Lucy, who has been mentioned several times, and the hon. Member for Aberdeen North mentioned the importance of listening, which is the bit I wanted to pick out from what Lucy said. I had experience of that many years ago as Minister with responsibility for disabled people, and it has come up again and again. I shall read from Lucy’s piece on the website of Together for Short Lives, which I commend for its work on this issue. I would be grateful if the House would take a moment to hear Lucy’s voice:

“All throughout my illness, and my life in general, the one thing I’ve always wanted is to be listened to. That is extremely important. I have very little control in my life, being dependent on others for almost everything. The only bit of control I have is my opinion and my ability to make decisions. I value this greatly. However, I am not in control over whether people listen to my opinion. My opinion or decision is only in my control if people listen to it and take it on board. It’s hard for some people to understand why I get so upset if someone makes a decision on my behalf without my consent and prior knowledge, but when it’s the only thing I have control over, you can understand why. Healthy people make decisions all the time and everyone has their own opinion. But when you’re sick and/or disabled, suddenly some people think it’s ok to make decisions for you, as if, somehow, being sick or disabled makes your opinion worthless or unnecessary. Others do it to be kind, but it still can be upsetting. I am perfectly capable of making my own decisions, and so I should be involved in all decisions that concern me or affect my life. My decision, no matter what it may be, should be supported. Be it what clothes I want to wear, where I want to go or even down to things like whether I want to be kept alive by machines or if I choose not to have life-prolonging treatment. However hard or important the decision, the individual should be listened to—even if you don’t agree with what they’re saying.”

That is a remarkable personal statement from an obviously remarkable young woman, to whom we have all paid tribute during the debate.

Turning to the main part of my speech, I shall start with some remarks about funding before using the generous time I have been allowed by tackling some of the individual issues that have come up. Some children and young people have very complex health needs, which may be the result of congenital conditions, long-term, life-limiting or life-threatening conditions, disability or the after-effects of serious illness or injury. The NHS and related services support such children in a range of ways, but the role of children’s hospices is crucial, and it is right that we focus on it today. I am grateful that so many individual hospices and organisations have been mentioned in the debate, not least by my hon. Friend the Member for Pudsey in his opening speech. I pay tribute to Keech hospice, which is based just outside my constituency on the outskirts of Luton. It covers Bedfordshire, Buckinghamshire and Hertfordshire, and I thank the staff there for the work they do.

I also thank St John’s hospice in Moggerhanger, a Sue Ryder organisation for which I have run a couple of marathons. My hon. Friend the Member for Colne Valley mentioned a time of four and a half hours; my time the other week was six hours. Obviously age is getting to me. I shall have to work on cutting down my time next time, but I did appreciate seeing the Sue Ryder cheering team on the Embankment about a mile away from the finish. A hug at that time of the day was most welcome. I thank all those who partake in fundraising efforts for children’s and adult hospices throughout the country. Those efforts cannot be overstated and are really appreciated.

As hon. Members will recall, the coalition Government initiated work to look at the basis on which palliative care services are commissioned for people of all ages. That work continued under this Government, reflecting the importance that we attach to these services. The aim of the work was to have a more transparent and local approach to commissioning services. Children’s hospices in particular have not always enjoyed a very close relationship with local health commissioners—neither primary care trusts nor clinical commissioning groups. That is largely a reflection of their history. They developed as voluntary sector organisations, driven by people’s time, good will and charitable donations.

Of course, many commissioners do support local children’s hospices and hospice-at-home services, and we have heard of some good relationships today, but there is variation in commissioners’ awareness of the valuable role of children’s hospices, and in the extent to which commissioners—both local authorities and CCGs—fund them. That has been usefully highlighted by research undertaken by Hospice UK and Together for Short Lives, as was mentioned earlier.

Children’s hospices are not just a vital resource for care and support to children with life-limiting conditions; there is also a clear role for hospices and hospice-at-home services in supporting families by providing respite care for children and young people with complex needs and disability. We want that to be encouraged as part of a more strategic approach to children’s health outcomes. We now have new statutory requirements in relation to children with special educational needs and disability that require CCGs and local authorities to work together. Such a model of integrated arrangements would provide a framework for wider support to children and young people with complex or life-limiting conditions, so it is an opportunity we should support.

In supporting more integrated arrangements for commissioning for children and young people, we want to emphasise the role of the hospice sector as a provider of respite care, and how such provision can dovetail with other specialised and universal services in a co-ordinated way. That can be supported through far greater transparency about the nature of care and its costs. As colleagues have mentioned, the coalition Government agreement pledged to introduce a new per-patient funding system for hospices by 2015 to cover care for adults and children, regardless of which organisation provides it. The aim was to have transparency about services and costs, which would allow local commissioning of palliative care.

The long process of data collection and costing—I will come back to data shortly—was a model of co-production with the sector. It identified considerable complexity in developing a new system that is sufficiently responsive to the varied needs of palliative care, particularly in the case of children’s hospices. It resulted in a draft palliative care currency, which is being used and tested locally, and the aim is to publish a final currency next year. As the hon. Member for Worsley and Eccles South said, it is not a mandatory payment system but a first attempt to group specialised palliative care into packages that are similar in the resources needed and, in particular, in workforce requirements. It does not attribute prices to the packages, as they are for local negotiation in the usual way as part of the commissioning process.

There are concerns that the currency approach does not reflect all the services provided by hospices and that a young person and their family might need, and that it perhaps lacks the flexibility that I mentioned. The currency is a useful basis for local discussions between providers and commissioners, but it is work in progress. It is clearly not the end point, although we have moved on from where we were.

NHS England recently convened a round table on children’s palliative care, which included representatives from the children’s hospice sector. It identified that the varied nature of children’s palliative care requires us to consider other funding models. NHS England and Public Health England recognise that a per-patient tariff—the principle behind the currencies for palliative care—may not be the only or the most suitable funding model for palliative care, particularly given the diverse range of the needs of children and young people with life-limiting conditions. NHS England will review with stakeholders a range of potential approaches to palliative care funding for children and young people, using the existing currencies as a basis for different models. My hon. Friend the Member for Pudsey will be glad to know that the children’s hospice sector will be part of that work. The aim is to identify the most practical approach to funding, which will allow strategic discussions between CCGs and providers and transparency about the care packages that are being secured.

I am glad to say that we are able to provide more direct support in the form of the £11 million grant that NHS England makes available to children’s hospices. The future of the central grant is a topic to which we return regularly. I appreciate that it is a source of uncertainty and frustration to children’s hospices that NHS England is not able to provide a long-term guarantee or a multi-year confirmation of the grant. We should recognise, however, that it is not dissimilar to other areas of health funding and that, in that respect, children’s hospices are no different from other providers of health services. NHS England itself does not have a long-term allocation, so it cannot in turn make long-term commitments about grant funding to children’s hospices. However, NHS England, on behalf of the Government, has made a clear, ongoing commitment to continue to support children’s hospices. There is no question of the abrupt cessation of that support if there is no sustainable local commissioning alternative in place. I know the children’s hospice sector will welcome local commissioning arrangements, and ultimately their success should mean an end to a rather unusual central grant, but the former must be in place before we can have the latter. My Department and NHS England are equally keen to ensure that the transitional process is smooth and that it is achieved by working closely with the sector.

There are a number of imaginative funding developments and ideas. My hon. Friend Steve Brine, who was unable to take part in the debate, reminded me of a submission from Naomi House in his constituency. It talked about the very successful 30% contribution contract arrangements that exist across the south-west, including in Wiltshire, Dorset and Bournemouth and Poole. It stated that in many ways, the model in the south-west is a great example of Government policies in action, with services being funded by pooled budgets of health and social funds. It continued by saying that the system of a contribution, rather than full cost recovery, is an example of third sector and public bodies working together to achieve value for money and the delivery of quality services, which helps to avoid family breakdown and unnecessary admissions to hospital, leading to further savings.

I know a lot about data collection from my other portfolio—mental health services—because the Opposition spokesperson, Luciana Berger, has made it a specialist subject on which she could speak on “Mastermind.” She has helped me to encourage the Department to do better on data collection. As I outlined, the NHS and the Government have been through a process to determine a new funding model, which has assisted in uncovering more of the necessary data. I am assured by my officials that further work will go on.

The identification by commissioners of children with a life-limiting condition is essential to ensure the efficacy of commissioning plans. There is also a need to ensure that professionals who are not usually in contact with children with life-limiting conditions, such as in primary care, are fully aware of the child’s needs. The Department is exploring the potential for a flag on general practice information technology systems to allow practitioners to note when a child or a young person has a life-limiting condition. More data collection is certainly on the cards. Effective conditioning has to start with effective identification. In 2014, the Department of Health issued guidance for health and wellbeing boards on children’s complex needs, which provides key insights on effective needs assessments. That work will continue.

On social care funding and short breaks, a question was asked about local authorities, council tax and the adult social care model. Local authorities have to make complex choices about how to target resources more effectively. With my adult social care hat on, I am well aware of the social care precept. The Department for Communities and Local Government is undertaking a comprehensive and thorough review to devise a new formula to assess councils’ needs and to provide fair funding for every type of local authority ahead of the introduction of 100% business rate retention by the end of this Parliament. There is clearly a lot of work to do over the coming months to work out the details of the new system. The DCLG will consult with local government more widely on the issue shortly. I encourage my hon. Friend the Member for Pudsey to make representations to the DCLG about funding children’s social care in the same way as the adult social care precept works. Perhaps he and other colleagues will take advantage of that review.

Since 2011, the Government have made it a statutory requirement for all local authorities to provide a variety of short break services. Regulations require them to publish a short breaks duty statement describing what short break services are on offer in their area and how they can be accessed. It must form part of the local offer of services for children and young people with special educational needs and disabilities. The Government contend that that transparency is really important. When asked about their implementation of special educational needs and disability reforms in February 2015, the vast majority of authorities reported that they were keeping their short break budgets the same as for 2014-15, but I am aware of the pressure that exists. The Under-Secretary of State for Health, my hon. Friend the Member for Battersea, will certainly review the debate, and I have heard what colleagues have said.

I will also draw my hon. Friend’s attention to the issue of mobility, which virtually every Member has mentioned. When I was the Minister responsible for disability some years ago, I was in charge of mobility, so I am well aware of the benefit and impact of mobility assistance. Concerns have been raised about the age limit, which is an issue for the Department for Work and Pensions. There was a meeting between Together for Short Lives and my noble Friend Lord Freud in February 2016. The response, which is on its way to Together for Short Lives, indicates that my noble Friend the Minister listened very carefully. It says that, if there is to be a change, it will involve primary legislation. That is perhaps not quite the short and simple answer that we all want, but he committed to ask his officials to explore whether there are other ways in which the Department can provide support. I will certainly report to my hon. Friend the Member for Battersea how important mobility is to those with very young children.

The Government provided £420,000 in grant funding to Together for Short Lives to help the transition taskforce look at how the transition between children’s and adult services can be eased. I know that is an important factor for many families and will be increasingly important in the future.

I hope I have covered all the issues that colleagues have raised. If there is anything that I have not covered, I will write to the colleagues who raised it. If it is something substantive, I will put a letter in the Library so that colleagues present in the debate can pick it up there. I am grateful to all Members who spoke and to the constituents who involved them in what they are doing. I again thank my hon. Friend the Member for Pudsey for raising this issue and colleagues for the way in which they have debated it. This is an important issue, and I hope the debate has reflected that.

Motion lapsed (Standing Order No. 10(6)).