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Seeing survivors

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People feel ‘abandoned’ after treatment, but plans in the UK nations aim to tackle this. By Ingrid Torjesen

Cancer survivors have finished primary treatment and are living with or beyond the disease. At this point, many say they feel ‘absolutely abandoned’, says Steve Hindle, cancer survivorship programme lead at Macmillan Cancer Support.

Some will be offered a place on a self-management course or directed towards or find support groups, but many will try to cope on their own with issues such as fear of cancer recurrence and worries over money and returning to work.

Macmillan wants every patient to have an assessment at the end of their initial treatment that looks at all aspects of their life, not just medical needs, and a care and support plan drawn up.

‘This will require an integrated approach to information and support, self-management and health and social care services,’ Mr Hindle says. ‘If assessment was carried out now, we would have no real confidence that
all the necessary services would be there.’

Nurses know this. A survey by Nursing Times this year found that 83% believe that survivors’ needs are not met, 72% think services to help survivors adjust to practical and emotional after-effects of treatment are insufficient, and 61% do not think survivors’ needs for services are adequately assessed.

‘Only 40% of nurses received adequate training to help survivors’

Over 900 nurses responded to the survey. Around 40% believe that health staff need training to help them support survivors and a similar number believe survivors need better tools and information to help themselves.
Just over one-third of respondents work in specialist cancer services, yet only around 40% of the sample think they had received adequate training to help them support people with cancer; 58% had received specific training but fewer than two-thirds of these considered it adequate. And nurses want information to help them support survivors and carers (see chart).

While most nurses saw carers’ needs as part of their job, fewer than two-thirds knew of services specifically designed for carers.

Two-thirds of nurses would approach a specialist nurse or local cancer services for information on care for survivors and 87% would contact Macmillan Cancer Support.

According to respondents, specialist cancer services and GPs should be primarily responsible for meeting survivors’ needs, followed by community nurses and charities such as Macmillan Cancer Support.

After intense lobbying from organisations such as Macmillan, UK governments are beginning to recognise that cancer survivors need more support and each of the four nations has begun to make progress on this.
England set up its National Cancer Survivorship Initiative in 2007. Its steering group, co-chaired by Ciarán Devane, chief executive of Macmillan Cancer Support and Professor Mike Richards, the national clinical director for cancer, is looking at issues important to survivors’ and carers’ quality of life. These include information and support, post-treatment care planning and late effects of treatment.

The NCSI is working on a vision document with the ambition that by 2012 survivors will receive the care and support they need to lead as long, healthy and active a life as possible.

Workshops have been held to gather survivors’ and carers’ views, pilots on post-treatment services began in September in partnership with NHS Improvement. Integrated care and support will be required from a range of bodies, including health and social care, the voluntary sector, employers and education.

In its 2007 strategic framework Designed to Tackle Cancer in Wales 2008-2011, the Welsh Assembly Government said it was necessary to assess the needs of cancer survivors.

Macmillan surveyed and brought together survivors to determine their emotional, practical, financial and psychological needs and how they might be met. It hosted an event with representatives of the Welsh Assembly Government, the NHS, local government and the voluntary sector to agree a way forward. Wales survivorship lead and nurse Gillian Knight unveiled her recommendations in March.

Scotland acknowledged the need to support people living with or beyond cancer in its action plan Better Cancer Care published last year. As well as setting up a national steering group to look at cancer issues, including survivorship, Scotland has recognised the importance of benefits and financial advice services by giving Macmillan £500,000 to provide access to such services across Scotland.

Northern Ireland is to publish a cancer service framework in the spring, and Macmillan has been working to ensure it addresses the issues facing people living with or after cancer, including information and support, and benefits and financial advice.

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