Dying to care

Too many people in Scotland are missing out on vital social care at the end of life. Last year, 57,500 people died in Scotland, around 46,000 of these people needed some form of palliative care. However, our research shows that 1 in 4 of these people miss out on the palliative care that they need – meaning that about 11,000 people every year aren’t properly supported, for a variety of reasons.

Social care is one of those reasons. Social care is an integral part of palliative care. It can mean the difference between being able to stay at home, get out of hospital, remain connected to families and communities, living the life people want to with some element of independence and control, and dying the way they want to. All things that people tell us they want to do.

No-one wants to become just a patient, quite rightly everyone wants to remain a person. People want to go to the pub one last time, make it to loved one’s weddings or be able to do things on their list that they’ve never quite crossed off. That skydive or bungee jump might be out of the question, but other things don’t have to be. Without good, supportive, adaptive and flexible social care though, even the small things like responding to mail or looking after your cat can become impossible.

Last week we launched our new report Dying to care – A report into social care at the end of life, in partnership with Hospice UK, MND Scotland and the Association of Palliative Care Social Workers. We are all frontline organisations providing care and support for over 20,000 people in Scotland. These may be people using a hospice service or receiving care at home with assistance from a clinical team as well as social workers. Many carers and family members also receive support, which is generally unquantified.

The report looks at social care provision for people with a terminal or chronic condition and those at the end of life. While people are living longer lives, they’re not necessarily always living healthier lives into older age. People are, and increasingly will be, living with more complex needs than ever before. However, financial and population pressures means that services are struggling to cope with demand and this is only going to get worse, unless we act now. The country needs to rethink the way that health and social care is delivered before we face a crisis in caring for older and dying people.

We produced Dying to Care to support discussion and improve access to social care. The report makes a number of recommendations that could improve services including:

  • making sure people get the support they want, if they need it

  • ensuring rapid access to adaptable social care packages

  • improving palliative care and bereavement training for professionals

  • improving sharing of information between health and social care teams, and

  • ensuring the social security system in Scotland is responsive to the needs of people living with a terminal illness.

Scotland’s National Action Plan for Human Rights is a vision of a Scotland in which everyone is able to live with human dignity. That includes being an active participant in decisions which affect their human rights, being treated with equality and without discrimination and being empowered to demand these rights.

However, without the right care and support in place, this often doesn’t happen. All too often, people don't access the care that they need at the end of their life. This can often depend on what condition you have – those with terminal cancer often getting more support than other conditions such as chronic obstructive pulmonary disease (COPD), dementia, heart failure, or where you live – with differences in access, length of time you might wait for assessments and subsequent support, and whether your support is free or you are charged. Many people also experience barriers to access end of life care based on their age, background, ethnicity, sexual orientation and social circumstances.

We want to make sure everyone is able to live and die with dignity, whatever that looks like and means to them. When someone has a terminal illness, there is only one chance to get it right. Let’s make sure we get it right every time. We ask the Scottish Government to consider the recommendations of this report in its ongoing work to ensure that everyone who needs palliative care has access to it by 2021.

Susan Lowes is the Policy and Public Affairs Manager for Marie Curie in Scotland. The report, Dying to care – A report into social care at the end of life, is available at www.mariecurie.org.uk/policy/publications