Monthly Archives: July 2015

The social care needs of people living with cancer

Belfast

We’re back from sunny Belfast and pleased as punch to have won a first prize at the NCIN conference, in the survivorship category, for our poster presentation on the social care needs of people living with cancer.

It comes after almost two years of hard work with expert agency mruk to design and conduct a programme of qualitative and quantitative research which – for the first time – assesses the practical, personal and emotional support needs of people with cancer in the UK, and how well these needs are met.

Until now very little official data has been available on the full extent of these needs and how well they’re being met. Anecdotal evidence and feedback from professionals on the ground has long pointed to these needs being common for people at all points in the cancer journey, and our research confirms just how widespread they are.

Around two in three people with cancer have practical or personal care needs, and four in five have emotional needs. Overall, almost one in three people with cancer have practical or personal needs but do not receive enough, or any, support. And almost half of people have emotional needs but do not receive adequate support. Often these needs are linked. A lack of support in one area can have a profound impact on other aspects of people’s lives. We suspected that family and friends would be the most common source of support. Our research has shown that they are often the only source of support. This can be true even amongst those with severe needs who need help several times a day. And to make things worse, family and friends often receive no support themselves to help them in their caring role.

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The consequences of a lack of support can be devastating, at a time when people need help most. Overall, one in five people with cancer experience a negative impact on their lives. This results from of a lack of support for their practical or personal needs. These can range from being housebound, unable to wash and dress, to experiencing unnecessary hospital admissions.

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We’re pleased to see our research being recognised by the research community and hope this leads to a greater focus on these issues. However, the real test is ensuring more people with cancer receive the right support when they need it.

The impact of the Care Act and new criteria for eligibility for support remain to be seen. However, with further cuts faced by Local Authorities the road ahead is definitely not an easy one. This is why as well as using the research to support our wider campaign work, we’re using it to inform new strategic partnerships with Local Authorities. Macmillan recognises the significant role of Local Authorities in supporting people with disabilities and long term conditions in their communities. They can make a real difference to the quality of life of people living with cancer too.  In partnership with Local Authorities we will invest to develop co-produced solutions and in building community capacity for local people.  There is long term commitment from Macmillan. We recognise that solutions need to be personalised, sustainable, replicable for other long term conditions. They also need to put the individual at the centre of their care and support.

So watch this space. And if you’re interested in finding out more in the meantime, a short report we published earlier this year based on the research is available here, which received a range of media coverage, including the Guardian, Daily Telegraph and Daily Mail

NCIN Conference – meeting our stakeholders

In early June I went to Belfast with around 20 colleagues to the National Cancer Intelligence Network Cancer Outcomes conference. This conference is one of the Evidence team’s most exciting events as it gives us the opportunity to talk to patients, researchers, clinicians, commissioners, allied cancer professionals, policy-makers and third sector organisations all in one go.

We exhibited many pieces of work at the conference, but a few highlights for me include the premier of our new short animated film on the use of data. It was great to see some of my complex job, where I use data and evidence to help understand and improve the cancer journey, boiled down into a three minute summary. However, if, like me, you enjoy the detail, more can be found about Routes from Diagnosis here, the England Local Cancer Intelligence tool here or the CREW study here.

A personal achievement at the conference was when I won second prize in the changing clinical practice/supporting commissioning/audit category for my 3,600 specialist adult cancer nurses: New evidence for workforce planning poster. Colleagues across Macmillan also won prizes in the survivorship/late effects of cancer and treatment poster category:

Yes, we did win all three prize places in this one category!

I was also proud to see Macmillan’s work at the conference in the media. We found almost 80,000 people in the UK were diagnosed before the age of 45 and are still living with one of the top four most common cancers. This was reported in five national newspapers, including three broadsheets and by Nursing in Practice. This story only represents one aspect of the data so I would recommend everyone explores the full data set.

In the Evidence team, we are all looking forward to the 2016 NCIN conference and would encourage anyone who loves data and could use information in their role to improve the lives of people affected by cancer to attend.

Author: Rachel White is an Information and Data Analyst in the Evidence team. She draws on internal and external sources to understand more about the numbers, needs and experiences of people affected by cancer.