Scottish Local Authorities and healthcare workers are not routinely identifying carers of the terminally ill and are creating a pressure cooker in end-of-life care, according to two leading charities.  

A new report from Marie Curie and Macmillan Cancer Support highlights a breakdown in care and unnecessary stress on family and friends taking on a caring role. Told through the first-person accounts of bereaved people, the issue stems from people not being identified as carers or being identified too late to receive the support they are entitled to.

Currently, an estimated 788,000 people in Scotland, around 17% of the adult population, are known to care for a relative, friend or neighbour. It’s estimated that in the next 20 years one million people will be caring for a loved one.

The report, ‘Getting it right for carers supporting someone at the end of life’ highlights that carers feel they are ‘bashing [their] head against a brick wall’ and can struggle when they don’t have a support system or when financial support is not in place. Good care coordination and information to support them in their caring role is also vital. 

Carers of terminally ill people can also face a significant impact on their well-being as a terminally ill person’s health can decline rapidly, at short notice, putting an increasing demand on the carer. From April this year, the launch of the Adult Carers Support Plan included in the Carers (Scotland) Act 2016 has been an opportunity to identify carers and prepare plans of support. Those caring for someone with a terminal illness, from 2020, will be able to get those plans fast-tracked meaning support will be available sooner. The charities highlight that people don’t have time to wait. 

Co-author of the report and Marie Curie Research Nurse Susan Swan said: "Carers told us that not only do they need support but also to know what is available and how to access it. For many their needs were coming second to those for whom they were caring. This must change so that carers are informed, supported and valued as individuals in their own right."

Janice Preston, Head of Services for Macmillan in Scotland said: "For the people that are caring for family members it is vital that they are getting the support they need. However, at the moment the current system is a pressure cooker and unless action is taken the consequences will fall heaviest on those carers.

"The wider health and social care system has a huge role to play in spotting and signposting cancer carers to get the help they need at the most difficult moments of caring."

Marie Curie and Macmillan Cancer Support are making eight recommendations to help support carers:

  1. More needs to be done to identify those in caring roles, especially those caring for someone at the end of life, particularly by those in primary care roles, such as GPs and District Nurses
  2. Carer details should be documented on the Key Information Summary (KIS).
  3. Those caring for someone at end of life should have their needs assessed quickly and a plan put in place to support them
  4. Support for carers needs to be coordinated and supported with good communication and information from those providing care and support
  5. Respite and replacement care needs to be easily available to those caring for someone at the end of life
  6. Information and support needs to be readily available to support carers to claim financial support they are entitled to including benefits
  7. Support, including bereavement support, should be available for carers once their caring role comes to an end
  8. There needs to be more research on the most effective way of identifying those caring for people at the end of life.