Working to improve the care and support available to carers

by Scott Sinclair Policy and Public Affairs Manager

When we talk about carers we talk about an incredibly diverse group of people. As the recently published Carers Week report Prepared to Care? points out, 6,000 people every day in the UK take on a new caring role.  They each come to their caring role in a unique way. They will come from different age groups and different cultural backgrounds, and their experience will also change depending on the condition or illness of the person they are caring for has.

Each year the Carer’s Week team holds a speed networking event at the Houses of Parliament, which provides MPs with an opportunity to talk directly to carers about their experiences. It is a showcase for how diverse a group carers are – every story that MPs hear is individual, unique and moving. At Marie Curie, we work in particular to improve the care and support available to carers whose loved ones are terminally ill. Each year we have attended the speed networking event with carers whose loved one has died and who are ready to talk about their experience. It’s not always easy to tell when someone is terminally ill. As Paul Burstow MP asked one of the carers at the event, how do you know when the end is approaching? It’s a difficult question to answer and often even health and social care professionals find it hard to estimate when someone who is terminally ill will die. Committed to Carers

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A little over a year ago, Marie Curie published Committed to Carers, a report on research that we funded the University of Oxford to undertake. What we saw in that research and is often reaffirmed by the health and social care professionals that work for Marie Curie is that every carer of someone who is terminally ill approaches death and dying differently. Some carers want all the information they can about their loved one’s diagnosis and prognosis, while others do not want to talk about death and dying at all. How comfortable they are can depend on any number of factors, but what is clear is that those conversations can help carers to plan for the care their loved one will need at the very end of life and the support they themselves will need. A striking result from the survey that informed the Prepared to Care report was that of the people who had experienced their caring role come to an end, a third (34 per cent) wished in hindsight that they had planned end of life care with the person they cared for. Of course, planning care can often be much more difficult than it should be and while the Carer’s Week speed networking event highlighted the uniqueness of carers there were some clear messages for MPs about how the social care system should be improved. From the end of life perspective, carers raised the point that being a carer is often very difficult financially. For some it seemed impossible to cope at times. They also pointed out that the care system is very difficult to navigate, even for people who are young and internet savvy. MPs reflected this concern and wondered just how much more difficult it would be for people in their 80s or 90s. What will the Care Bill mean for carers? We anticipate that many of these concerns will be addressed by the Care Bill, which is currently being debated in the House of Lords. The Bill will set a national eligibility criteria for access to social care support for both carers and the person they care for, for the first time, and will place a duty on local authorities to publish and provide information and advice on care and support – both local authority funded and privately provided –  that is available to people. The Bill also places a duty on local authorities to make care and support plans for carers and the loved one they are caring for and a duty on the NHS to ensure that local authorities are aware of where patients have care and support needs before they are discharged from hospital. Of course, the Bill doesn’t address all the problems facing people who care for someone with a terminal illness, and Marie Curie remains concerned that social care often arrives too slowly for people at the end of life and their carers – sometimes up to thirty days after they ask for help. Nevertheless, the Bill makes huge changes to the laws governing social care and should lead to real improvements for people who are terminally ill and their carers. Hopefully, in the near future we will see a system that positively supports people while they undertake a caring role, helps them to understand the system, and enables them to plan for life after their caring role comes to an end.