Hospices (Children and Young People)
(11 years ago)
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Stuart Andrew (Pudsey) (Con)
It is nice to serve under your chairmanship, Mrs Osborne. I am pleased to have secured the debate on an issue that is important for me personally.
I have mentioned on a number of occasions that it was my privilege to work in the hospice movement for some 16 years, mostly in the children’s hospice movement. Although being elected to this place was one of the proudest days of my life, it was tinged with a little sadness, because it meant that I had to leave Martin House children’s hospice. Through my time there and at Hope House children’s hospice, I got to see and hear at first hand the incredible stories of so many children, young people and their families. I got to witness people offering care and support not only because it was their job, but because they cared passionately about the families they were caring for. I got to see some remarkable courage and resilience on the part of children and of families living with the constant prospect that their child would not live into adulthood.
Many of my friends often said that they could not understand how I could work in such a place. Their perception was that a children’s hospice was a depressing place, filled with sadness and despair. For someone who walks into any children’s hospice in this country, however, that preconceived idea simply disappears. Of course there are sad days, when a child has deteriorated or come to the end of their life, and there are moments of pain, but for the most part it is rare to visit a children’s hospice and not to hear the sound of music in the background and children laughing, and an atmosphere of warmth and support, not to mention the wonderful smell of cooking and baking by the volunteers.
Martin House hospice is not only the hospice that I worked at, but it serves the children in my constituency. When it opened its doors for the first time some 25 years ago, it was only the second children’s hospice in the UK and it served most of the country. As time moved on and more hospices were built, so its catchment area changed. Today, Martin House offers practical help and support through a range of services to some 400 children and their families. That is the critical bit: it is not only about caring for the child.
When I spoke to many of the families, they would try to describe their feelings on learning that their child was going to have a short life. The most memorable reply that I ever heard was from someone who described it as the loss of hopes and dreams. At the birth of their child, they had dreamt about the child’s first steps, first words and first day at school, about the child going to university, getting married and eventually having children of their own. The family said that they had to make new dreams when they realised that their child would not be able to do those things. Martin House was there to do just that: to help them to build a life for their child.
The hospice offers a host of services that have developed over 25 years through knowledge, experience and listening. The impact on a family in which there is a child or young person with a life-limiting illness is difficult to imagine, but Martin House—like all hospices around the country—is committed to being alongside the children and their families. Such close work has helped Martin House to develop and fine tune what it has to offer, providing truly family-led care and support. The ongoing day-to-day care of a child with a life-limiting illness, which may go on for a number of years, can be a physical and emotional strain on the whole family. Martin House shares that care with them, and it can take various different forms from symptom control, through emergency and respite care to terminal care.
Respite care offers the opportunity for a short stay to give the family a break. I spoke to one father who said that if he got up eight times in the night he would consider it a good night’s sleep. His daughter was eight years old at the time. Imagine doing that for more than eight years—it is no wonder that they need respite and support. Sometimes they may all stay together as a family, or sometimes they leave the child at the hospice, but it is an opportunity for them to recharge their batteries. Many a time I saw them looking exhausted when they arrived on a Friday, but was pleased to see them looking much more relaxed on Monday morning after a weekend of not having to think about feeding the child, doing the ironing, washing or cooking—all of that was taken care of by the wonderful staff.
Emergency support is there for when the families hit those everyday problems that we all experience. If a relative falls sick or there is a problem at home, it is difficult enough for us to deal with, but for someone with a child with a life-limiting illness such things are much harder. Knowing that there is someone at the end of a line, in a hospice, who is able to help is a great relief.
We must also think about the terminal care. No one really wants to think about a child or young person dying, but to be able to think about or, where possible, plan for that time is something that those care teams do with great skill and compassion.
Mr Lee Scott (Ilford North) (Con)
I congratulate my hon. Friend on securing the debate. Does he share my admiration for the way in which staff deal with parents, such as at my own local children’s hospice, Haven House, which serves the young people of my constituency in that terrible situation. The care, the passion and the compassion that they show to the parents enables them to deal with something that, in honesty, no parent would want or should ever have to deal with.
Stuart Andrew
I certainly agree. I got to know Haven House through my time working in various hospices. It and the other hospices do tremendous care—even at the most difficult and challenging times, they manage to do it with a great sense of dignity, which we should all be proud of.
Ensuring that the families are supported through the most difficult period is paramount, but also beyond that, through bereavement support. What is good about many of the hospices, Martin House included, is that the services are offered not only at the hospice, but in the family home, to ensure that as much as can be done is being done. The first head of care at Martin House was an inspirational lady called Lenore Hill. I remember that her phrase to the families was: “The answer is yes; now, what is question?” Such a philosophy is what makes the hospices so wonderful.
Time has gone on and medical advances have been achieved, so many of the children are now living longer. For example, when I joined Hope House children’s hospice in Oswestry, boys suffering from Duchenne muscular dystrophy would invariably live to about 18. By the time I left Martin House, however, some 14 years later, some sufferers were living into their mid- and late 20s. Naturally, that is good and wonderful news, but it presents new problems.
Mark Pritchard (The Wrekin) (Con)
I pay tribute to my hon. Friend’s dedication and loyalty to the hospice movement over 16 years and for representing the movement today in Parliament. He mentioned Hope House. Will he join me in paying tribute to all the volunteers and staff at Hope House in Shropshire and at the Severn hospice, which my hon. Friend also knows? They do such a great job week in, week out.
Stuart Andrew
During the course of the debate, all the hospices are going to be mentioned, which is wonderful and exactly what I want from the debate. My hon. Friend is absolutely right.
Stuart Andrew
I will give way in a moment, but I must deal with the previous intervention first. Hope House deals with the constituency of my hon. Friend the Member for The Wrekin (Mark Pritchard), as well as with the Welsh area through Ty Gobaith, so I will also take an intervention from my hon. Friend the Member for Montgomeryshire (Glyn Davies).
Glyn Davies
I am grateful to my hon. Friend for allowing me to intervene. I, too, want to laud the services from Hope House, which serves most of my constituency. Will he also accept how important it is to have a good relationship across the border between England and Wales? So many services simply fall apart because of the border, but at least it does not for this particular service, because of the activities of Hope House.
Stuart Andrew
That is absolutely right. A lot of lessons can be learned from the hospice movement on providing care, because what matters at the end of the day is the children and the families—they should be able to access services as easily as possible.
I was talking about the youngsters living longer, but the hospice environment was generally geared towards young children. It started to become less appropriate or even desirable for young adults to go into the same building. The trustees at Martin House took the brave decision to build a new, separate teenage unit in the grounds. Through generous public donations, Whitby Lodge opened its doors in 2002, the first hospice of its kind in the United Kingdom. It has been a huge success, and is being replicated around the country, because young adults get to behave just like that: as young adults. The conversation is more appropriate to their age, and they can share and talk openly about their own needs, fears and hopes. As a result, the care team can learn more about the young people and help them where they can with their particular ambitions. While I was based at Martin House, a number of young people went to university, encouraged by the care team. The team also tried to help those young people when they were going through the transition from child care to adult social care.
Mr Robin Walker (Worcester) (Con)
I congratulate my hon. Friend on the important and passionate case that he is making for children’s hospices. As he has pointed out, people are now living much longer with complex conditions, so transition is a key area. Does he welcome the work that Acorns children’s hospice is doing with the Help the Hospices movement to design better pathways for transition?
Stuart Andrew
Absolutely. I will talk in a little more detail about transition later. The Care Bill had its Second Reading on Monday, and I raised specific points about transition during that debate, because it is a big issue for many of those young people.
The conversations those young people had were very moving. I will never forget one particular young man. We were recording a promotional video to show to health professionals and as a fundraising tool, and we asked the young people at the hospice to say what it meant to them. The head of care was interviewing them, so that they were with somebody they knew and felt as comfortable as possible; she asked that young man, “What is the most difficult thing about your condition?” He considered the question for a moment, and what he said had a profound effect on me. He said: “Falling in love.” At that moment, it hit me that despite their physical limitations or their conditions these are still young people, with all the same feelings and hopes that we all experience. He wondered if anybody would ever love somebody who was, as he put it, “Like him.”
That local experience at Martin House is but one piece in a huge jigsaw. Support and palliative care do not come only through hospices such as Martin House, Hope House or the others that have been mentioned. I want to cover three areas: NHS funding for children’s palliative care; short breaks; and support with mobility for children under three.
Fabian Hamilton (Leeds North East) (Lab)
I congratulate the hon. Gentleman on securing this debate. Two organisations that help hospices and the hospice movement throughout the country are the National Council for Palliative Care and the Help the Hospices movement, which has already been mentioned. Both ensure that the high standards that all hospices aspire to and achieve are maintained through mutual good practice and the sharing of experience. Does he agree that those organisations give superb support not just to Martin House, which he has mentioned, but to St Gemma’s in my constituency and all the other hospices that hon. Members have mentioned?
Stuart Andrew
The hon. Gentleman is absolutely right. Those umbrella organisations help to share best practice, and it is through them that the hospice movement has grown so significantly. The movement is something that we can be proud of worldwide: we now have visitors from all over the world coming to our hospices to see how it is done—and, frankly, it is done brilliantly.
As I was saying, the national picture is much bigger. There are some 49,000 children and young people in the UK living with a life-limiting or life-threatening illness that means that they need palliative care. There are some wonderful and committed professionals providing that care in some inspirational places—not just in hospices, but in the family home, in hospitals and in community settings. Families with children with life-limiting illnesses are some of the people most in need in the UK, but many are still not getting the help and support that they require. Although services offer a day-to-day lifeline to families, many of the challenges that they face can be addressed only by changes to policy, both nationally and locally.
In November, I was proud to co-host a reception in Parliament for Together for Short Lives, the UK charity that supports all children with life-limiting illnesses. At that event, the charity launched its policy priorities for the next Parliament. During the reception, the audience heard from Lucy Watts, who is 20 years old. Lucy described the impact that her condition has on her life, the care that she receives and the needs of young people like her. She became ill at 14, and was diagnosed just after her 15th birthday. Lucy is fed straight into her bloodstream, via a central line, and can sit up only for up to five hours a day. She is wheelchair-bound, but has to spend the majority of her time in bed. Speaking about the gap in services for young people with palliative care needs, she said that
“what has been forgotten is that in between children’s and adults, there are the young adults. We deserve the same recognition and distinction as children’s and adult services, but it’s barely recognised. There is the transition period, but young adult care goes beyond transitioning from children’s services to adult services. As a result, the transition can be a huge leap, too many changes too soon without factoring in the needs of people who are not children, but not mature adults yet either.”
That is a powerful quote from that young lady.
Making sure that the right children’s palliative care services are available, in the right place, at the right time, is crucial. Those services should cover the whole spectrum of care, including short breaks for children and families. Commissioned and delivered effectively, children’s palliative care can play a cost-effective role in supporting early discharge for children from acute care settings through step-down care. It can also help to reduce unplanned admissions among children to acute care settings. A Government-commissioned funding review has highlighted that hospital admissions in the last year of life for children who need palliative care can cost an estimated £18.2 million. That far outweighs the cost of providing palliative care to children outside the hospital setting.
Research has also shown that short breaks provided by children’s hospices, which often include health care interventions, help to reduce stress on families and demand on public services. Children’s palliative care services, including children’s hospices, must be funded fairly and sustainably. Families need to know that their local services will continue to be able to provide the care that they need—an issue that was reflected in the 2010 coalition agreement.
I pay tribute to my field within the hospice movement: the wonderful fundraisers, who raise millions and millions of pounds for hospices. My job as head of fundraising was made much easier by the dedication of many volunteers and supporters. We had to raise over £4 million a year to run the hospice, and somehow—I do not know how—those volunteers managed to do that year in, year out.
Karen Lumley (Redditch) (Con)
I am grateful to be able to contribute to this debate. My hon. Friend the Member for Worcester (Mr Walker) mentioned Acorns, the hospice that serves our community. Does my hon. Friend the Member for Pudsey (Stuart Andrew) agree that volunteers do an amazing job, and that the NHS could learn a great deal from how we run our hospices?
Stuart Andrew
That is a very valid point. Hospices do inspiring and innovative work.
Julian Sturdy (York Outer) (Con)
I congratulate my hon. Friend on securing this debate. He is making an incredibly powerful speech. We know how important fundraising is to the hospice movement. In my constituency, I have been working on and fundraising for Martin House’s “good night’s sleep” appeal, which is sponsored by BBC Radio York. It aims to provide the respite care that parents need—an issue that my hon. Friend touched on at the beginning of his speech. Will he join me in expressing his support for that appeal?
Stuart Andrew
Absolutely. I gave an interview to BBC Radio York this morning, and assured the people involved that we would get a mention of their fundraising efforts into this debate. My hon. Friend has managed to do that, and I am extremely grateful to him for ticking that box for me.
Stephen Gilbert (St Austell and Newquay) (LD)
I, too, congratulate my hon. Friend on securing this important debate. He is making a powerful point about funding. Demand for beds at Little Harbour, run by the Children’s Hospice South West in my constituency, has doubled recently. Since 2006, we have seen a 30% increase in NHS funding, but only a 10% increase in hospice funding. Does he agree that the balance needs to be redressed, and that we need to do our bit to make sure that hospices have the funds that they need?
Stuart Andrew
Absolutely. My hon. Friend makes a valid point, and brings me on to the issue of funding from NHS England. Children’s palliative care is commissioned by the NHS using two separate methods. The first is through NHS England specialised commissioning. The care is commissioned directly by NHS England, and covers functions such as prescribing unlicensed medicines and managing complex symptoms. NHS England has published a specification for specialised children’s palliative care services, which came into force in October.
The second means of commissioning is through clinical commissioning groups, which should commission the more general aspects of children’s palliative care. There is confusion among some CCGs about which elements they should commission. I hope that the Minister will provide the answers, today or later, to ensure that the CCGs know that they are responsible for commissioning children’s general palliative care and know what that should be.
Overall, statutory funding for children’s palliative care in England is patchy and inconsistent. For example, local NHS commissioners contribute an average of only 13% to the care costs of children’s hospices. However, that masks significant variation. Three hospices in England receive no local funding from their NHS commissioners, and three organisations account for one third of their total income. The Government currently provide a central grant of more than £10 million through NHS England to address the shortfall, and they have committed to introducing a new per-patient funding system for children’s hospices as part of the coalition agreement.
The umbrella organisation, Together for Short Lives, shares the aspiration and vision for a transparent funding system that is fair to all sectors, and it is supporting NHS England to develop it. However, there is growing concern in the children’s palliative care sector about whether an NHS tariff will deliver a more sustainable future, and how practical it will be to implement. I have a couple of questions for the Minister. Will she set out an implementation and commissioning plan for the tariff, including a commitment to consult on the detail and fully test the tariff? Will she commit to a simple tariff that includes the central elements of children’s palliative care, including short breaks when there is an assessed need?
Many families rely on short breaks to recharge their batteries and spend time together. However, not all of them can access such breaks, because commissioners do not always commission them appropriately. Children’s hospices receive less than 2% of their care costs from local authorities, despite £800 million being available to fund short breaks. Half of children’s hospices receive no funding from their local authority. Will the Minister ensure that local authorities ring-fence money allocated to them for short breaks, and audit local authority spending on them, to ensure that as many families as possible are able to have them?
I am conscious that time is passing, and I am sure that other hon. Members want to make a contribution, so I will write to the Minister about the final point I wanted to talk about—mobility. Children’s hospices in the UK are a beacon of a decent and civil society. People in other countries look to them with awe and admiration. They do truly amazing and innovative work, and always strive to make the best of short and difficult times. There is a wonderful saying in the hospice movement: “While we cannot add days to their lives, we can add life to their days.” It is no exaggeration to say that my outlook on life changed significantly through working in the hospice movement. My opponents in my constituency referred to me in their leaflets a couple of times as “our ever-smiling MP”. After what I have witnessed and been inspired by, I am pleased by that remark. All the families have been determined to enjoy life, and I think how lucky I am.
I would like to finish with the words of Lucy Watts, the young lady I mentioned earlier, who movingly said:
“Quality of life is of the utmost importance when you have a life-limiting illness, as you want to be able to enjoy the time you have left. Although our bodies might be dying, our minds and spirits are fighting to live. I'm still a young person with wants, needs, hopes and dreams. I want to have fun and enjoy myself, do things people my age normally do, and I have plans and goals for the future.”
I hope that we as a country and as a Parliament can help her to fulfil those dreams.
Mr Kevin Barron (Rother Valley) (Lab)
I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing this debate. I will try to keep my contribution as short as possible as other hon. Members want to speak. First, I think it right and proper to say a few words about Bluebell Wood children’s hospice in North Anston in my constituency. It is in 6.5 acres of land that was regenerated after closure of the local coal mine, and has its own exclusive access road. Its highly specialised care team look after children with a vast range of complex medical needs and support the whole family on their life journey, offering short respite breaks, day care provision, community support, crisis intervention and end-of-life treatment and care.
Families often come to Bluebell Wood hospice exhausted after caring for a child with a life-limiting condition requiring 24-hour, seven days a week care. It is there to help, and offers respite care to the whole family and gives them the opportunity to spend quality time together knowing their child is in safe hands. It gives families the chance to recharge their batteries and to come and go as they wish. It is a relaxed, fun and happy place to be, where brothers, sisters, mums and dads can enjoy the fun and games. Its motto is “living with love and laughter”.
The hospice provides eight beautifully appointed bedrooms for children and young people as well as accommodation for families. It also has two end-of-life suites, “Primrose” and “Forget-Me-Not”, which are self-contained accommodation suites where parents can stay after their child has passed away. The deceased child can stay in a special adjoining room to be close to them. They can stay until the funeral, giving family and friends the opportunity to visit at any time. The staff are also on hand to help the family with any funeral arrangements if necessary.
The hospice boasts a music room, messy play room, sensory room, cinema room, soft play area, teenage room and Jacuzzi. It is surrounded by beautiful and tranquil gardens, including a dragonfly remembrance garden, which was built by Alan Titchmarsh and was featured on his ITV programme, “Love Your Garden”. It offers care and support for children and young people with a shortened life expectancy, both in their own homes and at the hospice. There are only 43 children’s hospices in the country and Bluebell Wood cares for more than 170 children from south Yorkshire, north Derbyshire, north Nottinghamshire and parts of north Lincolnshire.
Fundraising for the hospice started in 1998 after the death of an 11-year old boy, Richard Cooper, who had a rare degenerative disease and longed for care and support outside a hospital environment. The charity was established, and community support to build a children’s hospice in south Yorkshire was quickly forthcoming. After a lot of fundraising and working with families in the community for two years, Bluebell Wood children’s hospice proudly opened its doors to children with life-limiting conditions on 19 September 2008.
Fabian Hamilton
I would like to pay my own tribute to Bluebell Wood, as well as Martin House, both of which I know. Does my right hon. Friend agree that one of the best ways in which all hon. Members here can help to support the hospice movement—as he and the hon. Member for Pudsey (Stuart Andrew) have done—is to come and support the all-party group on hospice and palliative care, which meets regularly in this place, at least every three months, and brings together professionals from hospices all over the country? Will he please endorse the request to attend those meetings and support the all-party group?
Mr Barron
I am a member of the all-party group—indeed, I am an advocate of all-party groups—and I believe that bringing together professional people from the hospice movement leads to advancement and educates us about what is happening out there in the real world.
Bluebell Wood has 90 employees, including the care team and administrative staff, and currently more than 350 active volunteers. The hospice and I are extremely proud of them. It would not be the place it is today without them. They work on reception and in the kitchen, they help with the housekeeping and administration, they dig the gardens, paint rooms and help in the shops, to name but a few tasks they carry out. The hospice has eight shops in the surrounding region which raise funds. They are based throughout south Yorkshire, and there is also one over in Derbyshire, in Bakewell. I want to point out to the Minister that it costs more than £3 million for Bluebell Wood.
Mr Nigel Dodds (Belfast North) (DUP)
I join in congratulating the hon. Member for Pudsey (Stuart Andrew) on securing this important debate. Would the right hon. Member for Rother Valley (Mr Barron) allow me to offer my thanks and support, on behalf of my constituents, to the Northern Ireland children’s hospice, which looks after 600 life-limited children and young people, and to the volunteers and staff there? The recent announcement by the Minister of Health in Northern Ireland to allocate £2.3 million towards the hospice movement, including the adult hospice in my constituency, has proved an enormous boost to all those involved in looking after the terminally ill in Northern Ireland.
Mr Barron
The right hon. Gentleman makes his case very well. As I was saying, Bluebell Wood costs £3 million a year. I notice that my hon. Friend the Member for Rotherham (Sarah Champion) is in the Chamber today; she was the chief executive at Bluebell Wood hospice until what I think I could call her “elevation” to become the hon. Member for Rotherham just over 12 months ago—I see that she is not too sure about that phrase. Bluebell Wood costs £3 million a year and as we know, adult hospices in England receive an average of about 34% of their funding from Government. Children’s hospices typically receive much less Government funding—somewhere in the region of 15% of their running costs—although some get next to nothing, and I have to say that Bluebell Wood falls into that category. It receives 5% of its funding from Government and, were it not for the volunteers, the rest of it would not be there at all. It certainly would not be in the shape that it is now, providing that vital service, not only in the hospice itself, but at home.
In the summer of 2010, the Government set up a review of palliative care funding and in July 2011, they published a report, which I recognise stated that there is
“a stunning lack of good data…for palliative care in England.”
I know that finding a tariff, finding out the right costs and what should be paid is very difficult, but the national health service is, far too often, taking decisions without evidence. I see a need for that evidence to be collected.
Pilot sites were offered in November 2011, and I do not know how many sites were set up in March 2012. Can the Minister say when those pilots are likely to have enough good data that we are able to take real decisions about how the NHS, although it should not take over hospices such as Bluebell Wood, should perhaps contribute a bit more to the vital care that those children, young adults and families receive in hospices?
Sir Paul Beresford (Mole Valley) (Con)
I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing the debate. He has covered much of what many Members would say. There are 49 hospices in the United Kingdom, so there will be probably be 49 interventions and press releases.
I need to declare an interest, as I shall focus on Shooting Star CHASE, which is a fantastic organisation that serves south-west London, west London, Surrey and West Sussex. My interest in it is that I have a family member deeply involved in it. I am stunned—merely going on to the website is such an education. It looks after 600 families in the area, 365 days a year, 24 hours a day. The basic cost is £23,000 a day, because it is not just about what is done at its hospices. They are out helping the families and so on. They are working outside, right across the board in the area—in the homes and in the various organisations outside that support them. I shall focus, because everybody is hankering to get in, only on some of its costs.
At the moment, Shooting Star CHASE does not appear, from my research, to receive any money apart from charitable funding and from the Government. As has been mentioned, NHS England provides £10.7 million, which is shared among 49 organisations, but that money has remained the same since 2007. Shooting Star CHASE receives £630,000 a year for its programme. A quick back-of-the-envelope or iPhone calculation will indicate that huge amounts of money have to be found over and above that. It is vital not only that that money is there, but that it gets charitable backing.
As has been mentioned, it is not unreasonable that the coalition Government have decided that they want to review how all hospices—by that, I mean adult and children’s hospices—are funded by the state. As has been mentioned, the review was launched in 2010. The aim was to produce a new per-patient funding system. NHS England, as I understand it, has set up a series of pilots across children’s and adult’s hospices to collect the data so that the tariff can be developed. I get the impression that the children’s hospice movement agrees that a consistent and rational method is needed. We are still waiting for that—it has been three and a half years to date.
Staying with that development, it is perhaps worth emphasising how I see it, as someone who has worked in the national health service in dentistry. I have watched review after review, and I have seen how they have become more complicated and more difficult for organisations, such as those hospices, to understand. It is absolutely vital that the resulting method of funding is not complex, nor should it be—as is classic with the national health service—over-bureaucratic. An adequate process for transitional funding is also necessary, because the new funding method will undoubtedly bring in changes and shifts, with dips and rises in funding.
I am sure that the Minister in her heart of hearts will agree, even if she cannot say so, that funding has not been increased since 2007, and that we need to recognise inflation and the changes in service that many such organisations have made. A tapering increase in funding could perhaps reflect inflation and even the increase in service delivery.
In terms of the new scheme, it is vital that there is no sharp change—I mean positively rather than negatively; I hope that there will not be any negative changes. With any changes, we need a commitment to transitional funding, so that there are no sharp bumps in the funding. It is progressive—these organisations are looking after children over a long period and any sharp bump would mean a dramatic change.
Let me go to my back-of-the-envelope calculation. This one small, two-unit facility, plus all the group’s work outside, gets £630,000 from NHS England. That is vital. Three hundred and sixty-five days at £23,000 a day comes to about £8.4 million. This Government, the previous Government and future Governments must be thankful that they are not being landed with the full bill. It is vital that we recognise that we should move with the times, that we should give people results, and bring in the transitional funding to buffer them, as well as having a system of funding that is sensible, non-bureaucratic and easily understood—soon.
Jim Shannon (Strangford) (DUP)
It is a pleasure to say a few words in relation to this topic. I thank the hon. Member for Pudsey (Stuart Andrew)—his constituency is wonderfully named—for his contribution. It summed up and set the scene for how we all feel about the matter. We thank him for his compassion and knowledge on the issue; it was a real pleasure.
Whenever I think of this issue, I think of Northern Ireland Hospice and its good work, and of all the other hospices throughout the United Kingdom, which other Members have spoken about, and of the scourge of cancer and specifically how it affects young people. Yesterday we had a debate on rare diseases. Perhaps the two debates could have been merged together—one on rare diseases and palliative care—because they very much go hand in hand.
As well as praising the hospices, I would also like to mention the Macmillan nurses, who, in many cases, make life just that wee bit easier for the families and those concerned. I pay special credit and thanks to those caring men and women who manage to make life that little bit less stressful for those suffering from cancer and for their families.
Robert Flello (Stoke-on-Trent South) (Lab)
I, too, thank the hon. Member for Pudsey (Stuart Andrew) for securing the debate, and there is also a hospice—the Donna Louise children’s hospice—in my constituency, which does marvellous work. Will the hon. Gentleman join me in commending the caring professionals, whether volunteers or paid staff, who will be working in hospices over Christmas and new year, caring for people in often difficult, if not tragic, circumstances?
Jim Shannon
I thank the hon. Gentleman for his intervention. I do join him in commending them, as does everyone inside and outside the House. We recognise the tremendous work they do—they are on call at all times. I sometimes wonder how they handle the sadness and emotion they have to confront each and every day as part of their vocation.
Northern Ireland Hospice is committed to fostering, encouraging and supporting a quality research culture internally, regionally, nationally and internationally, and it is known for the high level and quality of care it gives. My right hon. Friend the Member for Belfast North (Mr Dodds), who has just left, referred to the Northern Ireland Assembly Health Minister’s commitment to contribute £2.3 million to hospices, and that commitment by elected representatives shows the appreciation of what hospices do.
It is essential that those receiving end-of-life care have the best care available and are made as comfortable as they can be in their last days. It is also essential, as the hon. Member for Pudsey said, that the family have all the information they need, whether that is in a hospice setting, the patient’s home or through a palliative care package—those are the three areas that have to be looked at.
Some 49,000 young children in the United Kingdom of Great Britain and Northern Ireland live with a life-limiting or life-threatening condition and need palliative care. There are inspirational professionals working alongside them in their family homes, hospitals, community settings and hospices across the United Kingdom.
It is horrifying to think that if we had more children’s hospices, they would be filled, because the need continues to grow. Every time we find a drug that works against a strain of cancer, for example, a resistant strain appears. For that reason, it is essential we put money into not simply hospices and nurses, but research, and I am convinced the Minister will take the issue of research on board in her response.
I recently read a report stating there is a real danger that palliative care and palliative medicine will be the least evidence-based subjects in medicine in a few years’ time unless vastly more research is done. While palliative care is vital, research is equally important, so perhaps the Minister can give us some thoughts on that.
I hope we are all blessed with young children and grandchildren who are bubbly and full of life, but some families are not. Those families have to live with a child who is ill, and it is tremendously heartbreaking to acknowledge that. Before yesterday’s debate on rare diseases, the Teenage Cancer Trust sent us some information saying that 30% of children with life-threatening diseases will die before they reach the age of five. Again, that puts things in perspective.
Macmillan nurses told me that the sufferer’s mood is affected by their family. If the parents are content and relaxed, the child is likely to reflect that. This is about the family and everyone involved. It is also about the day trips and the residentials, which the hon. Member for Pudsey referred to.
We have fantastic charities, such as the Make-A-Wish Foundation, that help children with terminal illnesses live a dream. However, that in no way absolves us, as MPs, from our responsibilities to the families, and nor does it absolve the Government or the regional Assemblies from theirs.
Together for Short Lives has also highlighted an issue to me. Will short breaks for children who need palliative care be fairly and sustainably funded from ring-fenced funding allocated to local authorities for short breaks? We look forward to the Minister’s answer, and I trust it will be yes.
Another issue highlighted to me was benefits for families. As soon as the child is taken to the next scene of life—as soon as they leave this life—the parents are left to deal with their grief and their debt. Sometimes, handling the first overrides handling the second. There must be some leeway over cutting off benefits, so that the family has time to realise their financial situation and handle it accordingly. The Minister does not have direct responsibility for the benefits system, but will she say how we can help families get through the switchover at a time when grief is the ultimate driver of where they are? What can we do to ensure that they are entitled to time off and that their benefits are reduced gradually?
Sarah Champion (Rotherham) (Lab)
On the point about families, no parents separated as a result of the death of their child in the four years I was at Bluebell Wood, whereas the average in the country is 50%. Hospices are also very good at helping families to secure benefits and housing and to deal with their grief. The hospices therefore give holistic care.
Jim Shannon
I thank the hon. Lady for contributing her personal knowledge on that matter. I ask the Minister to tell us how the Government will improve support for the families of children with life-threatening or life-limiting diseases who die, to ensure that family members are entitled to time off and to have their benefits reduced gradually.
To conclude, a child’s illness is the most stressful thing a parent can face. We are failing the family and, by extension, the child if there is a lack of support. That can and, indeed, must change. I ask the Minister to outline what will be done to bring about the changes the hon. Member for Pudsey and others have outlined. We cannot heal these children—I wish we had that talent, but we do not, as much as we might want it—but we can make the journey easier. When will we start to deliver the extra, full care that is so needed?
Annette Brooke (Mid Dorset and North Poole) (LD)
It is a pleasure to serve under your chairmanship, Mrs Osborne. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing the debate. I certainly like the description of him as the smiling MP. He has much experience to bring to this whole debate.
I should declare that I am a long-standing supporter and patron of Julia’s House, a children’s hospice in my constituency. I am pleased we have this opportunity to recognise the plight of families with a seriously ill child, as well as the role of children’s hospices and other palliative care providers in supporting them. I endorse many of the comments that have been made.
I would like to use this opportunity to highlight a vital type of support that is lacking in many parts of the country for these children and their families, but which Julia’s House has helped to pioneer. Most children’s palliative care focuses on end-of-life care, emergency care and some respite, but Julia’s House, in response to parental demand, mainly provides all-year-round, frequent respite care at homes throughout Dorset and south Wiltshire, as well as in the hospice in Poole, in Dorset.
For families with a child with a life-limiting or life-threatening illness, sleep deprivation, exhaustion and anxiety about the child’s health can take a heavy toll on family relationships. Parental break-up rates in families with a long-term seriously ill child vary, but they are known to be higher than the national average. People commonly report isolation, lack of time as a couple or as a family, and physical and mental exhaustion among their worries. Knowing that a specialist service will take the pressure off them for a few hours at a time of their choosing each week can be the difference between coping and not coping. It is even better if the service comes to their own home, as many families cannot easily transport their fragile child.
In the more than 10 years since Julia’s House began to provide this care, evidence has emerged that many parents see frequent respite as a factor in helping them to stay together as they try to cope with their child’s complex round-the-clock care needs. The impact of the frequent respite service and the flexibility afforded by offering much of it in families’ own homes earned Julia’s House the accolade of health care charity of the year at the 2012 national charity awards.
Julia’s House and Bournemouth university are now researching the extent to which frequent respite care helps couples with a seriously ill child to stay together. Their three-year study will conclude in autumn 2015, with interim results available in autumn 2014. Reliable data from the research could point the way towards a change in policy. It is in nobody’s interests, including the welfare state’s, for the parents of seriously ill children to separate. If frequent respite can play a preventive role, and if successful models of support are emerging, health and wellbeing boards should be asked to make frequent respite for families a strategic priority. As well as involving Julia’s House the research project will widen early next year to include client families from a selection of children’s palliative respite providers in England.
When the research started, the Julia’s House chief executive Martin Edwards met officials at the Department for Work and Pensions and the family policy unit to explain the research aims. The officials were naturally interested in tracking the results. I hope that the Department of Health and the Department for Communities and Local Government will take a similarly close interest, along with policy makers in all the main political parties. We all like to talk about reducing family break-up, but we struggle to find levers for that, and the project could provide one. Julia’s House will share the research results with the children’s palliative care sector and representatives of the three main political parties.
Emergency and end-of-life care, whether provided by the state or the voluntary sector, is very important, but it may come after a process of several years. Many children diagnosed with a life-limiting or life-threatening condition will live into their teenage years or beyond, and it is important to make that time as happy as possible. The cumulative effect on parents of sleep deprivation, exhaustion, isolation and anxiety is enormous. Which of us can say that we could survive such pressure?
Jason McCartney (Colne Valley) (Con)
I want to praise my hon. Friend the Member for Pudsey (Stuart Andrew) for initiating this emotional and important debate. I hope that he will keep smiling; I know that his constituents smile a lot because of the hard work he does in his constituency.
The hon. Lady makes a great point about respite care. The Forget Me Not children’s hospice in Huddersfield opened its doors formally this year, but for a couple of years its nursing teams have been going into the community, helping 50 families. I volunteered with them last summer and remember vividly a single mum with a very ill child, whom they would help two mornings a week. She has not had more than two hours of unbroken sleep in the past six years, and those two mornings a week are the only times when she gets a little time to herself, whether to have her hair done or meet a friend. The contribution of those teams to her life make her a better mum, and help her to care for her child better. It is an excellent point.
Annette Brooke
That was an excellent intervention. How could any of us maintain a good family life under such unrelenting stress? What a difference that respite makes.
A family in my constituency likened the pressure to slowly drowning, in exhaustion. In their words, “The only name on the life raft reads ‘Julia’s House’.” For families elsewhere in the country, in the numerous places where there is no genuinely year-round respite, there is no life raft. I commend the initiative to the Minister and look forward to her response. The research is likely to show the great benefits to commissioners of spending more money on respite care.
Mr Simon Burns (Chelmsford) (Con)
I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing this important debate. It was refreshing to listen to such a fluent and interesting speech by someone who has done so much work in the hospice movement before entering this House three and a half years ago.
As many hon. Members have said, and others will know from constituency experience, the hospice movement is fantastic. The dedication of those who work in it, whether providing the care or, equally importantly, raising the finances in their community, is vital. We cannot thank them enough for their dedication and hard work.
We have concentrated in the debate, as people often do when talking about the hospice movement, on children’s and adult hospices, which are vital. However, there is an area in between that is all too often overlooked: the need for more palliative care, and hospice care and treatment, for young people aged between 18 and 40. The needs of someone in their late teens or 20s are completely different from the needs of children, or of aged adults, who make up a large proportion of the people cared for in adult hospices. Things have been improving in recent years, with greater recognition of the situation, but I do not think enough account was taken in the past of the age group in question.
I will be honest: 10 years ago it would never have occurred to me that there was a problem. I assumed that someone who was not a child would go to an adult hospice, where the care would be wonderful—as it is—and that would meet the needs of even a young adult. However, when I met my constituent Denise Whiffin, and the friends around her, it was brought home to me how much extra attention and concentration is needed to meet the special requirements of that age group. Denise Whiffin’s son Jonathan was diagnosed, aged three, with Duchenne muscular dystrophy. Of course he was cared for through the children’s hospice movement. However, when he was in his late teens that was of course no longer the most appropriate form of care. He moved to an adult hospice, with people who were much older, and whose needs, outlook, attitudes and requirements were totally different.
Denise Whiffin and others in my constituency looked around and came across a role model. I believe that it was the first hospice to be created in this country—in Oxfordshire—specifically for those aged 18 to 40. The group was inspired to try to replicate that in Chelmsford, to provide the same sort of help for mid-Essex. Those involved have done sterling work in the past decade, raising money from scratch. For some years they have been able to provide a wide range of badly needed services for young adults, in the patient’s home setting. Those things include specialist advice and support; unique care packages for each patient, drawn up by the clinical nurse specialist; expert advice on transition from children’s to adult services; practical nursing care; respite care in the home; counselling—which is vital for many families and young people; and a chaplaincy service and music therapy. They have expanded because of demand for specialist care for the age group, and their hope and ambition now is that in due time they will acquire premises in which to provide health care and palliative care.
Sarah Champion
My colleague has hit the nail on the head, and his example of a hospice is exemplary. However, aside from the social aspect, one of the most shocking things for a child is that on their 18th birthday the support of the paediatric consultant who has been with them all the way through is taken away. They are given an adult consultant who might not be able to see them for three or four months.
Mr Burns
The hon. Lady makes a valid and important point, which comes as no surprise, given her distinguished professional work before coming to this House after the Rotherham by-election. It is about continuity of care. Just because someone reaches a cut-off point in their age and lifespan, they should not necessarily—automatically—have to change from those who have been providing their health care up until that point. The individual’s needs and requirements might progress or change so that their consultant or other health care practitioner needs to change because of the skills that they have, but that is a totally different argument. I hope that my hon. Friend the Minister and the Department of Health as a whole will look at the matter to see how we can provide greater continuity of care from health care professionals where that is appropriate, so that there is not an arbitrary cut-off point.
I do not want to detain hon. Members much longer, because I know that others want to contribute, but I do think that we must bear this in mind. Fantastic work is going on, as has been shown by a number of interventions and speeches during the debate, in children’s hospices and, equally, in adult hospice care, but let us concentrate more on developing for the young people in the 18-to-40 age group provision that meets their specialist requirements, so that they, too, can have provision and quality of care that is tailored to their requirements and demands.
Mark Durkan (Foyle) (SDLP)
On the point about supporting people in the age group to which the right hon. Gentleman refers, does he agree that it is important for Government at all levels to encourage not just the hospice movement, but housing associations and good providers of sheltered housing models and supported housing models to think about how they might style particular developments and units precisely to accommodate people in that age group, so that they can live in a supported context but have premises that guarantee them more independent living, which is more appropriate to that age group?
Mr Burns
I am very grateful to the hon. Gentleman, too, for that constructive intervention. I know that, particularly in health debates, the term “holistic approach” is for ever used and can become rather hackneyed, but I do think that such an approach is crucial both in general health care in the NHS and in specialist areas such as palliative care, hospice care and end-of-life care. There really must be an holistic approach, and this is not simply about different sections of the health care community. As the hon. Gentleman says, it also involves housing and, as the hon. Member for Rotherham (Sarah Champion) said, the benefits system, where that is appropriate, for a number of people, because it is at this time in someone’s life and the life of their family and friends that they want the minimum amount of hassle, as they are going through some of the most difficult parts of their lives or their loved ones are. We want to minimise the extra pressures, concerns and worries, and that can be done through a more joined-up, holistic approach to the whole provision of care.
I know that the Minister will be listening very carefully to the comments made in the debate. I know that the Department of Health is extremely committed to the whole area of palliative care, end-of-life care and the hospice movement. I know that my hon. Friend will go away from the debate, reflect on a number of the points that have been made and do her best to help to address a number of the issues that I and other hon. Members around the Chamber have raised in the course of the debate.
John Glen (Salisbury) (Con)
It is a pleasure to serve under your chairmanship for the first time, Mrs Osborne. I join other hon. Members in applauding my hon. Friend the Member for Pudsey (Stuart Andrew) for securing the debate.
I would like to make some observations and reflect on the journey that I have been on this past year in engaging with this subject, starting with a question to my right hon. Friend the Prime Minister on 5 December last year. In that question, I raised the issue of Naomi House hospice, which serves Wiltshire, Hampshire and Berkshire and does amazing work, along with all the other hospices mentioned this afternoon. Naomi House hospice also has a facility, opened in recent years, for young people in the 18-to-25 age group, reflecting the fact that, previously, young people with some of these conditions did not survive for very long, but now they have a greater life expectancy. The facility is adjacent to the Naomi House site, and they work together.
Professor Khalid Aziz, who was the chairman of Naomi House hospice for well over 20 years, observed that he received funding from three different primary care trusts, as they then were—they are now clinical commissioning groups. Wiltshire, which is my local authority area—it was the PCT at the time—had agreed a very simple tariff arrangement whereby it gave £308 per night for any child who was staying at the hospice. Naomi House had not managed to secure a similar agreement with Hampshire or Berkshire. It therefore relied on a share of the grant from the Department of Health and some other statutory local authority funding, but, as with all hospices, it fundamentally relied on raising money through fundraising activities. I think that the figure was about £4 million a year.
A little time passed and then, on 13 February, I, along with Professor Aziz, had a meeting with the Prime Minister. He understood the issue very well. He was aware of the review that is being undertaken of palliative care funding across all age groups, and we went away greatly encouraged. A few more weeks passed, and I was a little concerned that progress was not being made. I sensed that there was some reticence to separate the issues about children’s palliative care and the palliative care review that is under way. In the end, we had a meeting on 19 June with the Minister of State, Department of Health, and we set out our concern that the very simple arrangement that works so well for Wiltshire, securing a guaranteed amount of funding, should be rolled out across the children’s hospice movement as the way forward. There was general agreement, I think, among the officials at the meeting that that amount of money was the appropriate amount.
I came up and had another meeting on 29 July. That time, I met Professor Alan Craft, who is the head of children’s health, and Dr Bee Wee, the national clinical director of palliative care, and they took me through all the work that is being done to understand the profile of need, how we calibrate what the tariff would look like and what conditions would go into it. I recognise that that is a very difficult piece of work and we definitely need it to be data led, as I think the right hon. Member for Rother Valley (Mr Barron) mentioned, but we were told that this work was going to progress and basically it would happen in 2015.
I was somewhat disturbed because the system that works so well for Naomi House could easily be rolled out. It is a very straightforward arrangement whereby a CCG is engaged with a local hospice and has said, “This is a contribution to the costs.” We know that there is a significant differential between the 38% funding that adult hospices receive—38% of their costs—and the 10% to 15% that children’s hospices receive, so this was a very simple measure.
I had a meeting on 15 October with my right hon. Friend the Minister for Government Policy. Then, on 25 November, I received a letter that said that the Government would include the local commissioning example in their national tariff document. Basically, the process that the Government are going through to review the whole arrangement for palliative care funding would continue and we would wait for the outcome. In the meantime, although Wiltshire and Naomi House would be put on the table as an example, it would not be presented in a compelling way so that it could be taken up as, I think, a very reasonable interim measure.
I am somewhat disappointed by that final response after all those meetings and all that dialogue, because what is needed sometimes is yes, rigorous analysis of the facts and the issues, but also promotion of quick solutions that would work in a very helpful way—that would ease the enormous burden on fundraisers in making up the gap in funding. There is great support in our communities for children’s palliative care. I sometimes feel that because of the very emotive nature of the work done by children’s palliative care providers and the fact that it pulls at the heart strings, there is always a sense that money will be found for it. I plead with the Minister to accelerate that process if she can, because we need to address the funding gap and ease some of the considerable pressure on providers.
Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)
I begin by congratulating the hon. Member for Pudsey (Stuart Andrew) on securing this debate on a topic about which he is clearly passionate. I pay tribute to him and to all the members of the all-party parliamentary group on hospice and palliative care for the work that they have done to bring this important issue to the fore.
As we have heard, there are 49 children’s hospices across the UK, which all do fantastic work for young people and their loved ones. As my right hon. Friend the Member for Rother Valley (Mr Barron) said, much of the hospice movement is supported by volunteers and millions of pounds of charitable donations. Many hon. Members from both sides of the House made passionate representations on behalf of their local hospices and the holistic care that they provide. Hon. Members have raised many powerful points, and I hope to touch on several of them. I want to focus on three points covered in the debate. First, I will set out the full scale of the care crisis facing young people with complex health and care needs; secondly, I will explain why that is an issue not simply for individual families but for society at large; and thirdly, I will touch on some of the areas that need attention to make life better for those young people, particularly those receiving palliative care.
As we have heard, more than 40,000 children and young people in England have palliative care needs. That includes children suffering from curable and chronic conditions, children with severe disabilities, and children and young people nearing the end of their life. That represents a 30% jump over the past 10 years. There has been a particularly marked increase in the number of 16 to 19-year-olds requiring palliative care, as we have heard from several hon. Members, to around 4,000 young people, which accounts for roughly 10% of young people under the age of 19 with complex care needs. That is in many ways a positive sign, because it demonstrates the great advances made in science and medical technology, and the fact that they have resulted in people living longer.
Cancer accounts for around 14% of young people diagnosed. Cancer Research UK figures show that five-year survival rates for teenagers and young adults have risen significantly across all cancers across the past 25 years. In the late 1980s, less than three quarters of young men lived longer than five years after having cancer, but the rate is now better than eight in 10. For girls and young women, the five-year survival rate now stands at 84%. There has been a particular improvement in leukaemia; the survival rate has jumped from less than 50% to more than 60%.
We are moving in the right direction, but as we have heard from hon. Members today, that presents a particular challenge, because more young people live beyond the reach of children’s care and transition into social care. Too many young people who receive care from children’s services turn 16, 17 or 18 and then fall off a cliff during the transition to adult social and health care. The right hon. Member for Chelmsford (Mr Burns) and the hon. Member for Pudsey highlighted the specific challenges facing young adults, and we heard an emotive quote from Lucy Watts, who summed up the situation well. Much more needs to be done to make the transition work better. Some of my constituents who have accessed wonderful services at the Alder Hey children’s hospital struggle when the health professionals and familiar surroundings that they have been accustomed to for so long change—a point that my hon. Friend the Member for Rotherham (Sarah Champion) articulated. Many families are shocked by the reduced support that they receive in many aspects of adult social care after they have made that switch.
Transition is a hugely stressful process, and in most cases families are moving from dealing with a single, comprehensive agency to managing several different agencies with up to four points of contact. It is easy for gaps to emerge in that fragmented process. Many conditions reach crisis point in late adolescence, so it is all the more important that young people and their families receive responses from care and health agencies in an appropriate, sensitive and timely fashion. There are too many instances of people having to endure the agony of being put on hold, or waiting for a reply to an e-mail, when their loved one has an urgent care need.
That is all in the context of a crisis in adult social care. Since 2010, £1.8 billion has been cut from council budgets for adult social care, and we await the impact of the local authority settlements which have been released today. That means that fewer people receive help with paying for their care and more people face increased charges for vital services that help them to get up and get washed, dressed, fed and helped to bed at the end of the day.
Let me make a brief comment on the wider costs to society. Demand for care is growing at a time when resources are being reduced. The costs to society of a bad care transition—whether those costs take the form of greater illness, negative social and educational outcomes, or possible early death—are far greater than the cost of putting in place adequate resources to ensure a good transition. I welcome some of the modest measures that the Government—[Interruption.]
Sandra Osborne (in the Chair)
Order. The sitting is suspended for a Division for a minimum of 10 minutes.
Luciana Berger
Before the Division, I was sharing with the House my welcome for some of the modest measures the Government put forward in the Care Bill, which the House debated on Monday. It represents a small step towards a better social care system, and builds on the Labour Government’s work to provide stronger rights for carers and improved access to information and advice.
Let me conclude by looking at some areas that still require attention, and with a few questions for the Minister. I praise the many charities working in the sector, particularly Marie Curie Cancer Care, which has a hospice not too far from my constituency, and Together for Short Lives, the leading UK charity for children with life-threatening and life-limiting conditions. Their joint “Don’t let me down” report, published last year, set out sensible and important proposals, a number of which the Government adopted, but four areas of concern remain.
First, we need a much more joined-up approach to commissioning health and social care services for children with palliative care needs. Currently, we have a split: NHS England commissions specialist care, and local authorities manage social care. That fragmentation means that the very high variation in access to and quality of services, depending on where people live, will continue. I would be grateful if the Minister told us the Government’s assessment of that postcode lottery, and what they are doing to address the disparity.
Secondly, children and young people need to be consulted, so that their care caters for them and their needs. There is a particular role for health and wellbeing boards in that. More than half the health and wellbeing boards have explicitly examined care for terminally ill adults, according to the National Council for Palliative Care. The likelihood, however, is that far fewer will have engaged with children and young people on the same scale. I would welcome a response from the Minister on that specific point. Thirdly, the different agencies that provide hospice and palliative care to children and young people need to talk to one another much more. Local authorities are unable to share data. What solutions are Government considering to address that problem? Fourthly, a solution needs to be found to enable all the information and records about a young person’s needs to travel with them. Too many young people have to tell their story all over again when they need to access a new service, or when they are transitioning.
The debate this afternoon has been positive and constructive. On this side of the House, we are ready to work with the Government to improve outcomes for young people and children who need hospice and palliative care. We hope to deliver an integrated, whole-person approach to health and social care. Whole-person care is about meeting the needs, whether physical, mental or social, of people of all ages, so that they are able to live an independent and dignified life. That is ultimately what the future of health and social care needs to look like, with world-class hospice and palliative care front and centre. That is what we are committed to delivering, so that we can help those who need it most.
The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I congratulate hon. Members on an excellent debate. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing it, and on speaking, not for the first time, with great passion and knowledge on this subject. The debate rather gives the lie to the lazy cliché that MPs bring no real-life experience to the House. It has been enormously informed by the life experience of a number of Members, and I congratulate everyone who has taken part. I will do my best to respond to the various questions put to me, but if by chance time defeats me, I undertake to write to colleagues. The Minister of State, Department of Health, my hon. Friend the Member for North Norfolk (Norman Lamb), is sorry that he cannot respond to this debate. As Members will have observed a few minutes ago on the Annunciator, he is otherwise engaged in the main Chamber.
Hospice care and palliative care for children and young people is an important and sensitive subject. From what the shadow Minister said, I can see that there is a good degree of cross-party consensus on the need to take the subject seriously and to sustain the way we serve the sector. The coalition placed great emphasis on palliative care in the coalition agreement, which included several specific commitments, such as a commitment to placing hospice funding on a more transparent and sustainable footing—that has been the subject of many comments today—and to introducing a new per-patient funding system for all hospices and providers of palliative care, so that the most gravely ill children and adults can receive care in the setting of their choice.
We have committed £10 million a year to support children’s hospices, as well as an additional £7 million in this financial year to support capital projects. In 2012, that allocation increased by over £700,000 to support new providers entering the sector, and we are keen to continue that substantial level of support now that responsibility has transferred to NHS England. We recognise the need for change in how children’s hospices are commissioned and funded. While a new funding system will be introduced in 2015, and while we have provided money to support hospices until then, we know that more needs to be done to support effective local commissioning. That, rightly, has been the focus of many of the speeches today.
Many hospices do not have as effective a relationship with their local commissioners as they might like, and funding from health commissioners is a relatively low proportion of the incomes of most children’s hospices and hospice-at-home providers. That is not universal, however. There are examples of local good practice where primary care trusts, formerly, and clinical commissioning groups, currently, have entered into funding arrangements with their local children’s hospice. My hon. Friend the Member for Salisbury (John Glen) has not returned from the main Chamber, but he spoke about the arrangements in his area for Naomi House, which has a per patient, per night tariff that has been arranged with the local CCG in Wiltshire.
We want the principle of CCGs supporting children’s hospices to be embraced widely across England. Monitor and NHS England are looking to include the arrangement between Wiltshire CCG and Naomi House in the national tariff document as a case study of good commissioning arrangements. Obviously, it is important that any nationally mandated or recommended tariff is based on a robust body of national evidence and provides clarity for commissioners on the services provided. I know that the working group has discussed the Naomi House example.
The charitable sector and the excellent fundraising work it does will always have a role. It has made an absolutely magnificent achievement over many years in all parts of the country; we have heard about that today. We are keen to see more effective and sustainable commissioning for hospices. We want commissioners to assume a more active role with their local providers, and we are keen to engage with the sector to see how we can support that. A lot of work is going on to develop that new model.
As has been referred to, the independent palliative care funding review, which reported in 2011, found that the absence of a clear funding model, or even a proper understanding of the costs of palliative care, was a major impediment to developing that care. The right hon. Member for Rother Valley (Mr Barron) mentioned the “stunning” absence of good data on the costs of palliative care, and the first step in developing a new funding system had to be improving the evidence base. We established eight pilots to collect a range of data and to test the review’s recommendations. The pilots—seven for adult palliative care, and one for children’s palliative care—are running for two years, and will provide the evidence to underpin decisions on how best to transfer to a fair and transparent funding system, which we intend to introduce in the 2015-16 financial year.
Hon. Members challenged us on the implementation plan and its timings. As part of the development of the tariff, there will be a plan for testing and implementation. Once we have clarity on the funding model, we will continue to ensure that the stakeholders are involved. Many of the hospices and their umbrella groups are closely involved in that work, and they will continue to engage in it.
I have heard the mood of the House on consultation. Although this is an NHS England lead, and I cannot commit it to carrying out a consultation, I can strongly encourage it and relay the mood of the House. The details of the tariff are still being worked on, but given that the new system will come into effect in 2015-16 and the sector needs to be able to plan ahead, we hope that that will happen in autumn 2014. That should be feasible, but I cannot commit to it. The sector is closely involved in that work and will be closely involved in the timing arrangements as well. It is key to say that we will not let this issue drift. The hospices are involved in the data collection and the discussion, and are key to the NHS England working group. The Government have made a commitment on that; we are conscious of that, and Members are right to push us on it.
NHS England is leading the work, and more than 80 organisations are involved. Barbara Gelb, the chief executive of Together for Short Lives, is a member of the Secretary of State’s children and young people’s health outcomes forum, so there is good read-across there. I emphasise how closely the sector is involved in the work, and how important it is to ensure that it supports the new funding model, which will be simple and non-bureaucratic—all the things that Members have alluded to today.
Having that clear, quality-assured information on the real costs of providing complex, costly care to a relatively small number of children will make a significant difference to commissioners. That has been emphasised by a number of Members. Concerns have been focused on that transitional period and the commissioning guidelines. The Department will consider in the coming months how we might further support that local understanding and preparedness among not only CCGs, but local authorities, as commissioners of social care.
Jane Ellison
I will struggle to respond to the points made in the debate if I give way. I hope my hon. Friend will forgive me, but I am happy to pick up points after the debate.
We realise that health and wellbeing boards need to be involved, and that sits firmly in my area of public health. I will think about how we can take that forward and publicise that more.
The transitional period and the challenge for older children and young adults was referred to a great many times, and has given much food for thought. The Department of Health has given section 64 funding to Together for Short Lives to support development and research around appropriate pathways and the transition to adulthood. The National Institute for Health and Care Excellence has been commissioned by the Department to develop guidelines around that transition. A number of areas of Government policy come back to that same challenge of how we deal with transition, and stop there being a cliff edge when a child becomes an adult. We all recognise that in real life that is not a cliff edge. In other policy areas, in other Departments, people are looking closely to see where we can get that right.
The Government have made short breaks a priority, and have put money, albeit not ring-fenced, into local authorities. We have introduced the short breaks duty, which requires all local authorities to provide a range of short break services for disabled children, young people and their families. A statement has to be developed in consultation with families and published. That is one thing that local authorities can be judged against. My hon. Friend the Member for Mid Dorset and North Poole (Annette Brooke)spoke about Julia’s House, which is an interesting case in that regard. We will ensure that that is brought to the attention of the national clinical director. I will bring all the points that have been made in this debate to their attention.
In the final few seconds that I have left, I wish to put on record my thanks to all the volunteers and staff who work in this sector. I know that in the coming weeks, which will be a difficult time of year for families with a loved one who is ill, they will bring both comfort and joy to the people they care for, and for that we thank them very deeply.