Last week saw Macmillan and other charities come together to celebrate and raise awareness of the amazing work people providing care and support to friends and family with cancer do. It was a week packed full of events and meetings with some haranguing of politicians thrown into the mix.
We began our week by attending an event in the House of Commons with the inspirational community member Hiloa, who while primarily caring for her husband with terminal bowel cancer, also looks after other family and friends with long term conditions.
Hiloa told her story to a number of MPs from all three main parties who were captivated by how she juggles her caring responsibilities and horrified to hear about the lack of identification and support.
A photo of Hiloa (right) and I (centre), meeting Andrew Stephenson MP in Parliament for carers week.
Hiloa was never recognised as a carer by any health professional she came into contact with and was therefore offered no support to look after her husband or herself. She found herself performing healthcare tasks without training and struggling to cope without emotional support or respite. It was only when she came across Macmillan recently that she was made aware of the support out there for her as a carer.
One MP we met, Barbara Keeley, who has been campaigning in Parliament on this issue for over a decade, was so shocked by Hiloa's experience that she raised it at a high-profile debate in the House of Commons that very evening. Check out Hiloa's fantastic blog about her experience in Parliament.
Later on in the week we turned our attention to what health and social care professionals can do to identify and support carers better. We facilitated a focus group with 19 professionals to explore this important issue.
We had an active debate looking at what professionals currently do to identify carers versus what they would do in an ideal world. We then looked at what is stopping them achieving this ‘ideal world’. Ending the focus group on a positive and constructive note we discussed what the solutions were to these problems and barriers.
It is clear there are many examples around the UK of excellent practice where carers are being supported to look after themselves as well as the person they care for. Over the next few months Macmillan will be carrying out some work to make recommendations to decision makers, such as the Government, and developing guidance for health professionals to identify and signpost carers. We hope this will contribute to a sea-change in culture amongst the NHS and social care so that all carers recognise themselves as such and receive the help and support they need and deserve.
Almost a million people in England are caring for someone with cancer but half are not getting any support. If you would like to take action to help change this please sign our letter to the Government.
Are you looking after someone with cancer? Have you been offered or signposted to support by a health professional? We would love to hear from you.
Learn more about our campaign to make sure cancer is top of the Agenda the General Election in 2015 by clicking the banner below.
