Hospices (Children and Young People)

Kevin Barron Excerpts

Wednesday 18th December 2013 Westminster Hall

[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?