As people with learning difficulties live longer their carers become correspondingly older. A council project in south London is helping meet the needs of older carers. Graham Hopkins reports
Gerald Hampton,* 83, was the sole carer for his Down’s syndrome son, Maurice,* 51, and had steadfastly refused any external support. Looking after Maurice was his job – nobody else’s.
However, concerns were accumulating. “We only had periodic access to Maurice,” says Alison Little, senior practitioner, social work team for adults with learning difficulties, Southwark, south London. “We knew that he was locked up in the house even when his father went out. The condition of the home was poor and there was no heating.
It had reached the stage where I was seriously considering legal intervention to remove Maurice from his father’s care.”
However, a member of her team, Denise George, project co-ordinator, older family carers, who had spent several months gradually building up trust, urged Little to give her more time. “Denise saw things from the carer’s perspective and was sure she could work with him collaboratively. She convinced me that Gerald was a very loving and committed father.”
Indeed, it had transpired that he had promised his wife on her deathbed that he would care for Maurice. “The trouble was he construed that as caring without any external support,” adds Little. George convinced Gerald that by having support he was doing the very best thing by his son and he gradually came around. George was able to oversee a refurbishment of the flat and the introduction of home care for the first time.
This is but one success story for Southwark’s support for older carers of people with learning difficulties. George’s first job in taking up post in 2003 was to find out what carers themselves had to say. “After about 30 assessments I could see that some issues kept arising: carers felt isolated; they needed a break; and about 90 per cent hadn’t considered any long-term plans for the people they were caring for. There were also themes of poverty, poor health and social exclusion.”
She wasted little time before networking and discovering what was available – and within a few months 20 carers got their first breaks away. “Carers didn’t know what was out there,” adds Little. “Their only contact with social services might have been in relation to their sons or daughters and they didn’t recognise that they had needs in their own right.”
The carers’ assessments led to reassessments of the cared for person’s needs which, in turn, increased levels of services and respite. “We also held seminars looking at housing options, wills and trustees, maximising benefits and so on.”
Health was a serious concern. Carers were simply ignoring their own health needs, including cancer, mobility difficulties and strokes, because they were so focused on caring. “Assessment reports were sent, with their permission, to their GPs,” says George, who now works on a carers’ health project with the Princess Royal Trust. “I linked in with older people’s services and practice nurses to help raise awareness. I also supported carers during hospital appointments.”
Support groups provided comfort for carers who realised they weren’t alone. “They shared stories, and we used these meetings to provide training on stress management and benefits for the over 60s.” In addition, a conference helped emphasise the importance of the caring role and links were made with the Foundation for People with Learning Disabilities’ older families network.
Importantly, social events, such as being taken out to a restaurant for lunch, were also organised. “A lot of the work was stressful for carers,” says Little. “For example, being invited to think about the future was extremely difficult for some of them. So we wanted to hold something that was nothing more than fun. It was a simple acknowledgement of their burden of responsibility; that they were being cared for, for once.”
The fact that the co-ordinator’s post is part of what the council pointedly calls an adults social work service (“We’re not care managers,” says Little, “care management is just part of what we do”) is also a simple and powerful acknowledgement of an enviable commitment to older carers. Carers need care, too.
*Not their real names
● The white paper Valuing People talks about carers aged 70 and above; Southwark targets carers from 65 upwards.
● Being based in a statutory social work office for people with learning difficulties, George’s role was so much more effective.
● You need to have a comprehensive picture of what is available not just for the older person as a carer, but for them as an older person in their own right.
● Work with integrity. “It’s about being straightforward and honest; keep appointments on time and don’t make false promises,” says George.
● Really listen to what carers say.
This article appears in the 19-25 October issue, on pages 40 & 41, under the headline A burden shared