Feature - Palliative care: Time to live

When you're providing care and support for terminally ill children and their families, you only have one chance to get it right. "That time in the child's life is so important and the family will have the memory of that child's care and death for the rest of their lives," says Lizzie Chambers, chief executive of ACT (The Association for Children's Palliative Care).

Even so, the sector has struggled for funding and understanding and access to palliative care services is a postcode lottery. The last year or so has been particularly difficult for providers, explains Chambers. With so many services provided by the voluntary sector, the move from giving grants towards commissioning has been tough.

Reduced services

The end of a £48m lottery programme for children's palliative care has also meant lots of community services have been reduced or gone. "The expectation was primary care trusts (PCTs) would continue the funding of children's palliative care teams - then the NHS went into the red," says Chambers. At the same time the sector has a higher profile than ever before, says Barbara Gelb, chief executive of the Association of Children's Hospices (ACH).

Earlier this year there was an independent review of children's palliative care and a government strategy is due out in January. This is ministers' one chance to get it right for the estimated 25,000 children and young people with life-limiting or life-threatening conditions in the UK.

But there are many challenges. Not least that few commissioners truly appreciate what children's palliative care means. It is different to adult care in that it covers a wider range of conditions and is often about providing services to whole families over many years, explains Chambers. It's not just about the specialist care a child might need at the end of their life but cuts across services in health, social care and education.

One problem is a lack of data about children and young people with life-limiting conditions. This is something ACT and ACH are hoping to address through a national mapping project. Up-to-date, accurate information is vital in order to make the best case for investment from commissioners, explains project manager Sonja Ezergailis. "The lack of evidence means people are saying there isn't a need," she says.

The work has been spearheaded in Cheshire and Merseyside where a trio of organisations - Claire House Children's Hospice, Chester Community Nursing Team and Alder Hey Children's Hospital's specialist palliative care team - have been collecting data. This involves gathering 15 basic bits of information including postcode, NHS number and diagnosis, explains Dr Lynda Brook, consultant in children's palliative care at Alder Hey.

For example, hospice staff fill in forms when new families come in or when a child dies and send monthly data to the local Children and Young People Palliative Care Clinical Network Group, which analyses the information. This data will help the hospice plan services and allocate resources, says head of care Karen Roberts. "It can also help define the hospice's role alongside other organisations and help ensure we work effectively with others," she adds.

Results from the first year show an average of 23 children or babies in the area in their last six months of life. "Knowing that means when you do think about respite care and individual nursing teams then the PCT has a general picture of the numbers of children needing palliative care," says Brook. But the data also charts fluctuation in needs and shows what works one year might not work the next, reinforcing the need for flexible services.

Another strand of the project has been mapping key palliative care and support services to help identify gaps. The work is to be rolled out across Cheshire and Merseyside. Meanwhile, the national team is planning to sign up other pilot areas. The hope is children's palliative care networks - forums that bring together local commissioners, providers and health and social care professionals - will be key in developing mapping, says Ezergailis.

"Hopefully forward-thinking commissioners will recognise this needs to happen and it will need to have some kind of funding attached to it," she says.

The Coventry and Warwickshire Palliative Care Forum has been going for about six months and has helped boost multi-agency working. Meanwhile, "integrated care pathways" developed by ACT have had a profound impact on the way services are being planned and delivered in the area. These set standards focusing on what the experience of children, young people and their families should be, cover everything from how to tell a family that a child will die prematurely to appropriate support and bereavement services after a young person's death.

Family focus

David Widdas, consultant nurse for children with complex care needs, says previously professionals from Coventry and Warwickshire were "going round in circles" in efforts to improve community nursing services. "It all seemed to be about who would manage services but once we started talking about children and families it broke down a lot of those barriers and we got a lot more focused on what matters," he says.

The new approach helped identify strengths and weaknesses including the need for a robust terminal care policy to ensure services are co-ordinated so that a dying child and family get the best standard of care. The pathway has also led to changes that have allowed drugs to be stored in patients' homes before they are needed to ensure everything is in place for a child to die there. And a new, safer record-keeping system for nurses using syringe drivers, which can be programmed to deliver drugs over 24 hours. There is still more to do including ensuring families have a greater choice of services and are supported by staff they know well when a child is dying.

But Carolyn Bishop, lead nurse for paediatric palliative care in Warickshire, says the pathway has already made a huge difference: "We think it's fantastic." ACT's pathway approach is just one way in which best practice is being developed. ACT and ACH are also working with the adult palliative care sector on another project to commission research on badly-needed transition services as advances in medical care mean more children live into adulthood.

Meanwhile, Gelb says a key priority for services is securing sustainable funding. Children's hospices recently benefited from government funding of £27m over three years up to March 2009. However, the strategy is unlikely to come with that kind of cash, so the biggest challenge for the sector is building good relationships with local commissioners. "There is going to be a lot to do once the strategy is published," Gelb concludes. "That's really when the hard work begins."

FACT FILE

- There are about 25,000 children under 19 with life-limiting or life-threatening conditions in the UK

- About two thirds of children with palliative care needs also need social care services

- Over 5,000 children and young people under 24 die every year from a life-limiting or life-threatening condition

- Most children and young people prefer to end their lives at home, but three quarters die in hospital

- 80,000 to 100,000 family members are affected

- More children with life-limiting conditions are living to early adulthood. The life expectancy for cystic fibrosis has doubled in the last 20 years

CASE STUDY

Anna Gill and her 16-year-old son Jamie who has a degenerative condition

Jamie is a happy 16-year-old who likes to have a laugh with his mates. He is "blissfully unaware" that he's seriously ill, says his mum Anna Gill.

When Jamie was aged three, his family was told he was unlikely to live past his early teens. He has a degenerative metabolic condition that's complicated by diabetes and epilepsy. He also has severe learning disabilities.

Jamie and his family live near Norwich and are supported by a range of services and professionals including his consultant at Norfolk and Norwich Hospital and a social worker from Norfolk County Council.

He has been going to the East Anglia Children's Hospices' centre at Quidenham, for short stays for many years. "It's his favourite place on earth," says Gill.

Jamie also goes to a special school and attends play schemes at a voluntary sector centre. He gets four hours of home care a week from a nurse funded by the local primary care trust and the Gills use direct payments to employ a carer for six hours a week during the holidays.

However, looking after Jamie is tough, says Gill, who admits one of the hardest things is not knowing when it will end. "You can handle any amount of pressure and practical problems if you know it's not going to last," she says. "But you can't keep going under that level of pressure for ever and a day."

One big worry is the lack of services for older young people with life-limiting conditions. "There is nowhere for him to go when he leaves school," says Gill. Jamie is too ill to go to a residential college while the only local service for young adults is massively oversubscribed. Another concern is the fact so many services Gill uses are charity-funded, which means there are no guarantees they'll continue.

Gill also highlights a lack of 24-hour emergency support and advice. At the same time she feels her family has been lucky: "We have had a lot of support and children's services and health work closely together here, but in some parts of the country there is nothing."