New Scottish social care report into care at the end of life

Scotland is facing a crisis in caring for older and dying people and needs to rethink how it delivers health and social care according to a new report from a coalition of organisations at the front line of health and social care.

In 'Dying to help: A report into social care at the end of life' Marie Curie, the Association of Palliative Care Social Workers, Hospice UK and MND Scotland call for a new approach to make sure people living with a terminal illness and their carers get the social care support they need to allow them to make the most of the time they have left.

The organisations highlight that time is short and unpredictable for people at the end of life and consideration needs to be given to prioritise social care. In Scotland in 2015 276 people died waiting for their social care packages to start, while others waited over a year for their packages[1]. There is also a postcode lottery of personal care charging if you’re under 65 years old, and have a condition not seen as terminally ill.

A ‘responsive social care sector’ can make all the difference to make sure someone lives and dies well – that people receive the care they need, without delay and that it’s adaptable to their needs and as their condition changes. It is possible to deliver coordinated, seamless care that meets people’s needs without causing additional strain on local authority budgets.

How this can be achieved includes the following recommendations:

• Ensure social care packages start immediately they’re needed and are adaptable to changes
• End social care charges for people living with any terminal illness ensuring this includes people under the age of 65
• Improved sharing of patient information between health and social care teams
• Fast track devolved benefits for patients and their carers
• Improved palliative care and bereavement training for professionals

There is currently no figure on the number of people who are in the last year of their life[2]. Of the 57,500 people who die in Scotland each year 80% of those would benefit from some form of palliative care though 25% of those people will not receive the palliative care they need[3]. Knowing the extent of the need is fundamental to help improve services locally and to help deliver on Scottish Government’s ambition to ensure that everyone who needs palliative care has access to it by 2021.

Susan Lowes Marie Curie Policy & Public Affairs Manager, Scotland said: Three in ten people in hospital are in their last year of life and one in ten people will die in hospital during their current hospital stay. Often people will go into hospital for a medical reason, but it is waiting for the right social care that stops them from leaving again. When people have a terminal illness, time is short and many don’t have the time to wait for delayed care packages. Good social care support can prevent unnecessary admissions, prevent people dying in hospital, and prevent delayed discharges.

Craig Stockton, MND Scotland’s CEO said, MND is a rapidly progressing terminal illness which stops the signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.  Average life expectancy is just 14 months after diagnosis.

It is therefore essential that people with MND have access to the social care they need as quickly as possible and that it is flexible enough to adapt to the rapid deterioration they will experience.  Sadly, for too many people with MND, this is not the case. 

This report outlines a number of steps the Scottish Government and Health and Social Care Partnerships can take to improve the situation for those with the illness, their families and carers.

Eilidh Macdonald, Policy and Advocacy Manager Scotland at Hospice UK, said: Swift and responsive social care is an integral part of supporting someone to live well as they are approaching their last days or living with a terminal or life-shortening illness. It enables choice and independence at a time that has the potential to be distressing and isolating for people and their loved ones.

Unfortunately, not everyone’s palliative and end of life needs are met. One in four people who die in Scotland every year do not receive the care that they need. We have to tackle the barriers affecting all aspects of someone’s care. As a society we have a responsibility to make sure this support is available when and where it is needed.

A spokesperson from The Association of Palliative Care Social Workers said: We know that lack of access and delays for social care is one of the greatest barriers preventing us being where we want to be to live and to die.  We also know that having good social care at an earlier stage is important for our quality of life.  Stability, flexibility and a high level of skill within social care enables continuity and allows us and those close to us to be at the centre of what happens.  

There is only one chance to get death ‘right’. This is not just important for the dying person, it is integral to the experience of those close to them; families, unpaid carers, friends and communities, and the legacy of not getting it right can be devastating for those left behind.  We hope that this document will be one of the building blocks that will help us move forward in Scotland.