The specific needs of cancer patients continue to be ignored by social care, finds Natasha Salari, but examples of better services do exist
A million thoughts must pass through the minds of people given a diagnosis of cancer; most of them probably centred on the battle to survive and not on the support they may need outside hospital.
The focus on medical treatment means their social care needs are often hidden and consequently ignored, but new research shows that any failure to provide social care for cancer patients and their carers comes at a high price.
A report from Macmillan Cancer Support has found that inadequate social care for people living with cancer leads to expensive and preventable admissions to hospital. Many patients and carers are not referred to social services for assessment and for those who are, there are not enough services to meet their needs.
Jane Gammage, head of lifecare at Macmillan, says: "Cancer is seen as a medical condition that requires a clinical response and not something that has social care implications. But it becomes very expensive if people constantly return to hospital because they are not supported at home. People need to be able to manage their condition in their own homes."
Macmillan wants social care for cancer patients to include anything from home and personal care to emotional support and financial advice on paying the bills and getting back to work. Carers also need someone to talk to, as well as breaks or the chance to continue working through respite care and sitting services.
"When people are receiving clinical treatment they are very caught up in the system of hospital visits and treatment processes," says Gammage. Afterwards they feel isolated, alone, physically unwell and unable to do the things they want to do for themselves."
Often, health professionals are not signposting patients and their carers so there is a lack of awareness around eligibility and the social care services that are available, Macmillan has found. Hospital social workers are ideally placed to play a key role in assessment and information provision but more are needed to make a significant difference to cancer patients.
"More hospital social workers would help. We know that a lot of people don't even realise that they could have an assessment of their needs. They are so distressed at the point of diagnosis and they don't know their way around the system. They may even think that social workers only deal with child protection," says Gammage.
Dwayne Johnson, co-chair of the older people's network at the Association of Directors of Adult Social Services, also feels that there needs to be better signposting of patients. "What do we know about these people?" he asks. "The only way we find out about someone with a diagnosis is through the NHS or the through the individual or a carer who knows about social services."
But Macmillan believes that this problem is compounded by the fact that even if patients and their carers are given information and are then assessed, they often do not meet eligibility criteria because there are not enough services available for those with moderate to low needs. With an ageing population and the number of people living longer with cancer increasing, the problem is only set to increase.
Most local authorities, according to the research, do not commission cancer specific services, believing that the needs of people with cancer should be met through generic services. Gammage feels that people with cancer have specific needs related to the effects of their treatment and that if tailored services cannot be provided, staff need to be trained in cancer awareness.
Johnson, however, says commissioning cancer-specific services is unnecessary, although he agrees with the idea of training staff in the needs of people with cancer. "There are resource restrictions," he says. "Once we get into providing services on a specialist basis we will never cover the whole range of different illnesses. It's not our role to have that specialist knowledge, ours is more of a supportive role."
Yet patients and carers may fall between the gaps in service, according to the research, because there is often not a joined-up approach to meeting their needs. Local authorities see cancer as a health problem and primary care trusts tend to see social care as an issue for local authorities.
Durham leads the way
At the Cancer Information and Support Service in County Durham, there is real evidence of joined-up working. The service, which received initial funding from Macmillan, is now financed by the local PCT but also includes one welfare rights officer employed by the council. He advises cancer patients and their families on benefits while other staff and volunteers offer one-to-one active listening, self-help groups and relaxation sessions. Patients and carers are also signposted to appropriate services.
Fiona McQuiston, health improvement lead for the service, says: "We fill the gap and we often act as a conduit to direct people to the right social care service. We need to look at the needs of the whole person and for that we need a flexible approach that involves joined-up working."
The report from Macmillan recommends that local authorities and PCTs have joint commissioning and assessment procedures for social care and pooled budgets.
"It's about recognising that a holistic approach is needed and it's everyone's responsibility," says Gammage. "The system is at breaking point. If nothing changes people will continue to return to hospital when they don't need to. Carers will be more stressed and will find it difficult to cope. There are huge financial implications."
Read the full report Do Social Care Services Meet the Needs of People Affected by Cancer?
Case study: PAUL BAXTER Cancer patient, Runcorn, Cheshire
Paul Baxter is in remission. His wife, Tracey helps to care for him. Paul underwent a course of chemotherapy after being diagnosed with testicular cancer in 2002. He had to be hospitalised for two months because the treatment caused his weight to fall to six stone.
At one point he was confined to a wheelchair and he still finds it difficult to stand and walk due to nerve damage in his hands and feet caused by the chemotherapy. After his treatment, Baxter had to temporarily move into his mother's house because he could not make it up the stairs to his flat. Despite informing his housing authority of this problem, he and his wife were only moved to a bungalow last year.
Although he was fortunate in having contact with a hospital social worker who helped him to claim benefits, Baxter had no idea that there could be other help available and he was not offered a needs assessment.
"When you are told you have cancer the only thing that goes through your mind is how you are going to get through it," he says. "When you leave hospital no one checks that you are OK. It would have really helped to have someone to talk to, to see if we were coping or if we needed help around the house."
His wife has been unable to work because she still has to help care for him. "I was never offered any support and I didn't have the foggiest about what we were entitled to," she says. "At times being a carer has been emotionally exhausting. Luckily we have family around but it would have been so nice if I had had someone to talk to or if someone had given me a break by sitting with Paul."
This article is published in the 25 June issue of Community Care magazine under the heading Cancer patients need social care too