Proposed National Care Service must include provision for end of life - Richard Meade

The Scottish government has stated its intention to begin consulting on legislation on its proposed National Care Service in its first 100 days in office. This is very welcome, and right that the government is viewing Scotland’s social care crisis as a priority issue.

Richard Meade, Head of Policy and Public Affairs, Scotland, Marie Curie

Those living with a terminal condition, and particularly those approaching the end of their lives, are increasingly dependent on social care to support them, alongside primary care and palliative care services.

People in the last six months of life will typically spend over five months of that time at home or in a care home. Many will be reliant on social care services, and family carer support, to be able to be cared for there. The nearer a person is to the end of their life the more care and support they typically need, creating greater demand on services which were stretched for many years pre-Covid. Social care services need to be flexible, capable of rapid change, person centred and sufficiently resourced with workforces which have been fully trained in palliative care to meet physical, emotional and spiritual care demands.

Bereavement and grief are also aspects of terminal illness which social care staff deal with frequently as those they care for die. Yet, this is largely unacknowledged with limited support available, and has been exacerbated by the pandemic where social care staff have dealt with wave after wave of grief and bereavement following the high number of deaths. Consistent, accessible bereavement support for social care staff must be an integral part of the National Care Service.

Many dying people will receive excellent care, and social care staff are invaluable to this, often in exceptionally difficult circumstances. Unfortunately, however, lots of dying people still do not get some or all the care they need as they approach the end of life, and this needs to be urgently addressed.

Over the next 20 years the number of people dying is projected to increase because of our aging population. Marie Curie led research is projecting that by 2040 around 65,000 people will be dying every year and 95% of them are likely to be living with a terminal condition and in need of care and support. That’s 10,000 more per year than now. The research also projects that deaths in the community mainly in people’s own homes and care homes is expected to increase from 50% of all deaths to two-thirds. A substantial increase. However, experts have said such projections are unlikely without a significant increase in investment in social care. Without that investment, many of those projected deaths will be in hospital. We know that most people would prefer to die at home or in their care home if possible.

We support much of the Feeley Review’s findings and recommendations, however, there was no direct reference to caring for dying people or those with a terminal illness, which was disappointing. In taking this forward the Scottish Government must recognise the role that social care plays in supporting dying people and that any National Care Service must fully reflect that reality.

The National Care Service must also work in partnership with the third sector which deliver services directly, and with social care providers. Partnership must be at a strategic level as well as delivery, and draw on the sector’s expertise and experience.

Much is made of sustainable funding for social care providers, which we agree is crucial to ensure quality of service and a well-paid and valued workforce, but this must also be true of the third sector. Many charities delivering frontline health and social care services live on short term funding or commissions that require charities to top-up with fundraised income. Ensuring that charities have sustainable funding will allow services to be developed that meet needs of the local populations they serve and give confidence to charities so they can plan, develop and innovate those services.

There is only one chance to get someone’s end of life care right. Social care is crucial to this. The National Care Service is an opportunity that must be delivered on for terminally ill people, as well as their carers, otherwise thousands of dying people risk being failed in the coming years.

Richard Meade , Head of Policy and Public Affairs, Scotland, Marie Curie