When an inquest concluded in April that 13-year-old Deanne Asamoah had overdosed on the morphine prescribed for her terminally ill mother, the spotlight turned on this most hidden of communities: young carers.
For the previous four years, the Buckinghamshire teenager had struggled to care for her mother, who has cancer. According to the 2001 census, she was one of about 175,000 young carers in the UK.
Kirsty, 18, who cares for her disabled younger sister, is a member of Carers Bucks, the same support group that Deanne attended. She says: “I think there are lots more young carers than we realise, but many of them would be scared to admit what they do. They don’t want people to laugh at them, or make them feel even more trapped and vulnerable.”
Jo Aldridge, director of the Young Carers Research Group at Loughborough University, adds: “All our research shows that young people fear that if they ask for help, the family may ultimately be split up. And it is true that many children taken into care are there because of parental illness.”
Deanne’s premature death coincided with the Department for Education and Skills’ announcement of £600,000 in funding for the roll-out of the Children’s Society National Young Carers Initiative’s training programme (see National Training Programme). But, sadly, it also coincided with young carers’ projects facing possible cuts as their funding lifelines – the Carers’ Grant and the Children’s Fund – are due to run out next year.
From March, Children’s Fund funding will go directly into councils’ mainstream budgets, while the future of the Carers’ Grant will not be known until the comprehensive spending review in October this year. Campaigners fear that, without ring-fencing, there is no guarantee that support for young carers will be protected.
David Richardson, chief executive of Carers Bucks, warns: “The sustainability of young carers’ projects is my main concern. They can be expensive to run. When the funding comes to an end, I don’t know what we will do.”
However, while lack of resources is a constant refrain, Sally Anfilogoff, a consultant, trainer and writer specialising in carers’ issues, argues that small, incremental measures can be effective and inexpensive.
“It’s easy to get stuck with the idea of ‘there’s no money to do anything’. I’d like to see more low-level intervention, like having carers’ champions in every agency who deal with children and putting in place contingency plans so a child can get respite help if, say, their parent has taken a turn for the worse and they’ve got exams to sit.”
From Kirsty’s perspective, this kind of practical help would make a difference.
“If we could have people in to help at home, even if it was once a week to just cook the dinner, or help clean up, that would be really beneficial.”
Many practitioners claim the recent split of council social services for adults and children has resulted in young carers falling through the gap, as few councils have protocols to help children’s and adults’ teams work together. This gap is reinforced nationally with young carers’ issues straddling the Department of Health and the DfES
Joint-working protocols will be instrumental in bringing cohesion to the way young carers are dealt with, says Jenny Frank, programme manager at the Children’s Society. “We want to see young carers featured in every children’s plan, and there should be a person in each council with specific responsibility for young carers and for ensuring adults’ and children’s services have shared accountability.”
Schools have an equally vital role to play, often being the first to notice poor performance, truancy or stress, all common signs of problems at home. Anfilogoff says: “While there are lots of good projects and after-school groups for young carers, that’s often the time when they have to rush off and attend to their family. I’d like to see a named teacher in every school who young carers can turn to for support, or just to offload.”
Health agencies will also need to play their part, adds Frank. “GPs need to look beyond the health needs of their patients and start to ask questions about the impact of illness on the whole family.”
In February, the government announced a wide-ranging review of its existing national carers’ strategy. While it will have an adult-focus, young carers will also be consulted. Readers of Community Care and visitors to www.communitycare.co.uk also told us last month that a better deal for carers – of all ages – is one of the most important issues facing the social care sector today.
For all the uncertainty hanging over the future of young carers, there is an undeniable momentum for change. But whatever the bureaucratic outcomes, Kirsty says that to stop caring for her sister is neither an option nor something she wants: “It is caring that defines us and makes us special. If a situation gets really hard then young carers should have a bit of extra help, but only while we need it and if we want it. Getting the authorities involved can sometimes be the biggest mistake, as they can destroy happy families and make situations worse.”
Frank says: “We all want to see the needs of young carers acknowledged, but not in isolation from their families. The key has to be prevention, and that can only happen if the person who needs care has a proper assessment and a care package that fully meets their needs. Then young people will not have to fill the breach in the first place.”
National Training Programme
The national training programme run by the Children’s Society National Young Carers Initiative and the Princess Royal Trust for Carers is targeted at councils, health trusts, schools and other organisations to improve the way they help young carers.
Marian Rodin, service manager in education and children’s services at the London Borough of Hillingdon, has been taking part in a pilot project with the Children’s Society to develop pathways for young carers and their families.
She says: “We wanted to address the difficulty in identifying young carers through adult social services, and even sometimes through children’s services where a young person may not meet the thresholds of need.”
Social workers dealing with adults now have a checklist of key indicators, prompting them to ask the right questions and identify a young carer in need of support.
“They now take a more three-dimensional approach when dealing with a client and will ask the adult how their illness or disability is affecting the family and how it affects or limits their capacity to parent,” Rodin says.
“If it is clear that a young person in the household is assuming much of the caring responsibilities then that social worker would refer them to either a specific young carers’ project or, if they are judged to be in high need, to children’s services.”
More information on the national training programme from firstname.lastname@example.org, or call 01962 711511.
* The Young Carers Research Group runs an internet-based information exchange network for researchers, practitioners, policymakers, charities and other organisations working with young carers.
* New guidance for professionals dealing with young carers is due to be launched at the end of June. Whole Family Working – Key Principles of Practice will be available on the Children’s Society National Young Carers Initiative