Hospices (Children and Young People)

Stuart Andrew Excerpts

Wednesday 18th December 2013 Westminster Hall

[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.

[Glyn Davies (Montgomeryshire) (Con)]

Will my hon. Friend give way?

[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.