Patient experience

Time to talk

This year, more than 300,000 people will receive the life changing diagnosis of cancer in England. And the number of people living with cancer is predicted to rise by 3.2% each year. But for too many people, who they are or where they come from will determine what happens next. Socio-economically deprived and low-income groups too often face the prospect of poorer access to the care they need, at the times they need it most.

Macmillan believe that even where people are living longer with cancer, this must also mean living life as fully as possible. The opportunity to live a high-quality life after the shock of a cancer diagnosis must never be determined by unjust and avoidable inequalities.

In Time to Talk, we contest that over the next decade, we need a more compelling and sector-wide approach to inequalities. The publication of an inequalities chapter in the NHS Long Term Plan constitutes an encouraging first step – but we call on Government to provide more specific detail on health inequality strategy, resourcing, incentivisation and cross-Government collaboration.

Finding cancer stories in London using ethnography

We worked on a project to collect stories and respond to challenges from seldom-heard communities. The purpose of this engagement work is to enable greater inclusion of people affected by cancer. We facilitated a hack session at City Hall with health professionals and community groups to explore solutions to themes emerging from the stories. Our 2020 compilation of stories provides information and recommendations to people working in cancer services.

Along with Wilding Health Ltd, we produced ‘Finding cancer stories in London using ethnography’. Ethnography is the study of cultures and groups of people who live in select communities. The project helped us explore ways forward in working with seldom-heard and BAME communities. We identified three key areas where people affected by cancer need support:

• navigating the system
• emotional support
• language barriers.

Download the report to find out more.

The results of the first ever cancer patient experience survey in Scotland were published in June 2016. The most interesting finding from the survey, commissioned jointly by Macmillan and the Scottish Government, was that patients who have a care plan had a markedly better experience than those who didn’t, on every single measure surveyed. The results will help inform a range of actions being taken forward under the new cancer plan.

In addition, we have successfully lobbied to ensure that the survey is repeated regularly like in the rest of the UK, so that we can use the results to drive up the patient experience across Scotland.

Access to a cancer nurse specialist and an holistic needs assessment are a must if we are to drive up the quality of experience people face when they are diagnosed with cancer.

The Wales Cancer Patient Experience survey has provided a rich source of evidence for Macmillan and other stakeholders in demonstrating the issues facing cancer patients in Wales. With the survey being repeated in 2016, we know that this will add extra depth and update this resource further.

We passionately believe that patient experience should be at the heart of national caner policy and strategy and will continue to use this evidence base to help inform our key partners in the NHS and Welsh Government.

Profiad Cleifion

Mae arolwg Profiad Cleifion Canser Cymru wedi bod yn ffynhonnell gyfoethog o dystiolaeth i Macmillan a rhanddeiliaid eraill yn dangos y materion y mae cleifion canser yng Nghymru’n eu hwynebu. Gan fod yr arolwg yn cael ei ailadrodd yn 2016, gwyddom y bydd hyn yn rhoi mwy o ddyfnder i’r adnodd hwn ac yn ei wneud yn fwy diweddar.

Credwn yn gryf y dylai profiad cleifion fod wrth wraidd polisi a strategaeth genedlaethol canser a byddwn yn parhau i ddefnyddio’r sail dystiolaeth hon i hysbysu ein partneriaid allweddol yn y GIG a Llywodraeth Cymru.

The first Cancer Patient Experience Survey (CPES) in Northern Ireland took place in 2015. Patients reported some of the best overall scores in the UK, but inconsistencies mean there is still room for improvement. We want CPES to be repeated and used to drive better patient experience across Northern Ireland’s five Health and Social Care Trusts.