People living with cancer and their carers have social care needs, as well as health needs. They tell us they need emotional and practical support and financial help throughout their cancer journey and these needs increase as the person with cancer approaches the end of their life. It is widely accepted that with the right support, 73% of people with cancer would prefer to die at home, yet only 27% actually do.
However, people living with cancer and their carers have great difficulty obtaining the social care that meets their needs. Over a third of people (35%) do not feel confident about how and where to access social care support. The lack of high-quality social care for people living with cancer means that carers are required to take on substantial responsibilities, which has a knock-on effect on their health, wellbeing and financial status. Consequently, people’s needs can escalate, resulting in costly and inappropriate hospital admissions.
Macmillan is working to address these issues in a number of ways. The social care programme has three areas of interest: the contribution social workers make to good end of life care, the role of social care in enabling people to manage their illness and needs; and support for carers. We are commisioning research to identify exactly what the social care needs of people affected by cancer are. We are also campaigning for free social care at the end of life for people affected by cancer. This is to address the current inequality that NHS-provided care is free at the point of need while social care services are means-tested. This means that people with assets above only £23,250 have to pay for their social care.
The process for accessing state-funded social care is complicated and lengthy, and is carried out separately from the healthcare system. For individuals who have maybe only weeks to live this fragmentation leads to delays that can prevent them from dying in the place of their choosing. Macmillan is therefore prioritizing aspects of social care at the end of life to lobby on in relation to the reforms to adult social care. Our key recommendations are:
- The government should commit to implementing free social care for people on an end of life care register before the end of this Parliament.
- EPaCCS (Electronic Palliative Care Coordination Systems) should be implemented across the country, and must involve social care as a key partner. Their implementation should be incentivised through using EPaCCS as the data source for an indicator on preferred place of death in the Commissioning Outcomes Framework.
- The 2014/15 ASCOF (Adult Social Care Outcomes Framework) should contain an indicator on choice at the end of life.
- Updated intermediate care guidance should highlight the important role that intermediate care services can play in supporting people at the end of life.
Support for people at the end of life
Whist Macmillan supports social work and social care posts, it is also aware that throughout the UK many people at the end of life and their carers are supported by local volunteer services, providing a range of emotional and practical support. This includes bereavement support, buddying/befriending, and transport. These services can help to improve the experience of individuals, carers and those important to them at the end of life and increase choice for people about where they are cared for and ultimately die. However, there is no UK-wide information available about existing services and gaps.
In December 2011 we commissioned the National Council for Palliative Care (NCPC), under the umbrella of the Dying Matters Coalition, to undertake a two-year project. This project is to develop a web-based information hub (hosted on the Dying Matters website) with details about community-based volunteer services that are providing practical and emotional support for people in the last 12 months of life and/or their carers. Bereavement support is part of the scope of this project.
This is a collaborative project with the Scottish Partnership for Palliative Care, with contributions from various organisations such as Marie Curie, National End of Life Care and Intelligence Network, Help the Hospices, Carers UK and Age UK. The website will be launched to the public at the end of May, and a gap analysis will help to inform future service development in this field to support people affected by cancer and their carers.
Macmillan is also working with the National Council for Palliative Care and other partners on a project to support carers of people approaching the end of life. There are over a million people in the UK caring for someone with cancer, but only 5% receive a carers’ assessment, meaning take up of social care support is very low.
Tes smith, social care programme manager at Macmillian Cancer Support identifies that: “We must all stress the importance of recognising that people affected by cancer have social care needs. This is something that both health and social care professionals must recognise and act upon. The consequences of not addressing an individual’s social care needs will be their re-entry to the health service. Lack of social care support also denies individuals and their carers real choice about their options for care at the end of life.”
The positive impact of social care support for individuals and those close to them at the end of their life can be seen in this thank you to a Macmillan specialist end of life care social worker:
“I just wanted to thank you for the help you gave my daughter and I when my husband was on ward 27. Unfortunately he has since died but with your help he had two days in the hospice before he died…and we were able to be with him and have some time together.” (Carer of a patient who chose to die in a hospice rather than at hospital.)
For more information about Macmillan’s Social Care Programme please visit the website.
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