Care Bill [Lords]

Written evidence submitted by Marie Curie and Help the Hospices (CB 06)


 Since the Draft Care and Support Bill was published, Marie Curie and Help the Hospices have been calling for the legislation to provide for fast-track access to local authority-funded social care for terminally ill people and their carers. We have been doing this because we know that most terminally ill people and their carers will face waits of up to 30 days to get access to social care. Some will die while waiting. Research also shows that people who have access to social care are far less likely to use hospital care [1] and therefore to die in hospital than those who do not. With the majority of people in England and Wales still dying in hospital (49.65%) [2] , it is vital that we make local-authority funded social care more accessible to those who are terminally ill and their carers.

We welcomed the Government’s amendment to the Bill which made clear that local authorities can treat the needs of terminally ill people as urgent. However, we feel that this clause should be strengthened so that local authorities will treat the care needs of terminally ill people as urgent. Currently, severe inequity exists around access to services for terminally ill people, with those living in affluent areas and being White British far more likely to die at home than those who live in less affluent areas [3] and those from black, Asian, minority and ethnic (BAME) groups struggling to access the care they need [4] . We are concerned that the Bill will deepen this inequity as some local authorities will treat the care needs of terminally ill people as urgent and others will not. This runs counter to the core principle of the Bill, which is to make high quality care available to all, regardless of where they live or their personal circumstances.

We are also concerned that local authorities are not prompted to consider the needs of people who care for someone who is terminally ill as urgent. When someone who is terminally ill has an informal carer they are far more likely to die at home [5] . Where the carers of terminally ill people are unsupported, the person they are caring for is more likely to suffer an emergency admission to hospital, which drastically increases their chances of dying there. We call for the Bill to be amended so that Subsection 4 of Clause 19 is worded as follows:

A local authority should meet an adult’s needs and their primary carer’s needs under subsection (3) where, for example, the adult is terminally ill (within the meaning given in section 82(4) of the Welfare Reform Act 2012).

Both Help the Hospices and Marie Curie recognise the Care Bill as a landmark piece of legislation that will go a long way towards ensuring that everybody who needs care gets the right level of support that they need. Care for terminally ill people needs to be addressed properly in the Bill because death and dying are issues that everyone will experience. The number of people dying each year is increasing, and people are now more likely to have complex health and social care needs at the end of life. Too often we hear stories of terminally ill people and their carers for whom care is either simply not available or for whom it arrives too slowly to make a real difference. The Care Bill offers the opportunity to correct this situation and we ask that you and your fellow Committee Members amend the Bill to ensure that all terminally ill people and their carers can get the care and support they so desperately need.

January 2014

[1] The Nuffield Trust. Understanding Patterns of Health and Social Care at the End of Life. 2012.

[2] Office for National Statistics. Deaths registered in England and Wales. 2013.

[3] Changing Patterns in Place of Cancer Death in England. PLoS Med 10(3). 2013.

[3] National End of Life Care Intelligence Network. Variations in Place of Death in England, Inequalities or appropriate

[3] consequences of age, gender and cause of death?

[4] Public Health England. Palliative and End of Life Care for Black, Asian and Minority Ethnic Groups in the UK. 2013.

[5] Understanding place of death for patients with non-malignant conditions. 2012.

Prepared 10th January 2014