Hospices (Children and Young People)

Fabian Hamilton Excerpts

Wednesday 18th December 2013 Westminster Hall

[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.

--- Later in debate ---

[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.