We’re proud, founding members of the Less Survivable Cancers Taskforce (LSCT), a coalition formed to try to improve the outcomes for six of the deadliest cancers – brain, liver, lung, stomach, oesophageal and pancreatic. And, one of the areas we know is a problem for people diagnosed with these cancers is their experiences of palliative and end-of-life care.
According to Marie Curie, the number of people dying who needed palliative care rose from 416,000 to 495,000 between 2012 and 2021 – a rise of 19%. The most common cause of death during this period for people in need of palliative care was cancer. Despite the increased need for palliative care, recent figures published by Marie Curie show that the system isn’t keeping pace. They estimate that one in four people in the UK dies without the care and support they need at the end of their life.
And it could get worse.
The aging population of the UK means that in just 25 years’ time, more than one person a minute will need palliative care when they die. But, unless the system changes, there will be hundreds of thousands who won’t receive care.
This simply is not acceptable.
We, along with the other members of the LSCT, believe that any solution needs to be developed alongside people affected by less survivable cancers. The LSCT has designed a survey to give people diagnosed with these cancers and their loved ones an opportunity to share their experiences of palliative care. This will help us understand your experiences, identify the gaps in care and work together to call for improvements to be made. We’re sure you have plenty of questions about the LSCT survey, so we’ve pulled together a Q&A.
Are palliative care and end-of-life care the same thing?
No. Palliative care is not the same as end-of-life care, it’s broader than that. Palliative care is defined as an approach to improve someone’s quality of life through enhanced supportive care by treating the symptoms and side-effects of a disease. This may also include psychological, social and spiritual care.
The aim of palliative care is to help people live as well as possible and for as long as possible after a life-limiting diagnosis for as long as they can. So someone might receive palliative care but not end-of-life care. Whereas end-of-life care is usually defined as the last six months. If you would like to find out more about palliative care, as well as a Q&A with a neuro-oncology Clinical Nurse Specialist, please visit our website here.
Why should I take the palliative care survey?
As well as Marie Curie’s reports showing that the palliative care system is letting down too many people, we regularly hear how difficult it can be for the brain tumour community to access quality palliative care. . We hear on our Support and Information Line, in our Online Brain Tumour Support Groups and through our Improving Brain Tumour Care surveys that the quality and accessibility of care can be vastly different depending on where you live.
We know that sometimes palliative care isn’t even offered or discussed when receiving a terminal diagnosis. This causes problems as it doesn’t allow people to think about their options, plan how they’d like to be supported or understand the process. We also know there are just not enough palliative specialists with knowledge and experience of brain tumours, which can have a real impact on the type or level of support that’s being offered. This has to change.
This is why it’s so important that we know exactly what’s happening for people affected by brain cancers across the country and what needs to improve. This will allow us as a Taskforce to work together and call for improvements to the system for those affected. That’s why we are encouraging our community to answer the survey by following this link.
Who can take the survey?
The survey is open to any adult in the UK who has experience of a less survivable cancer, which includes brain cancer. If you have cared for a loved one who has had brain cancer, you can also take the survey as it’s important to understand the experience of people who receive a diagnosis and those caring for them. This includes if you were not offered palliative care but feel as though you should have been.
If you or your loved one has been diagnosed with a brain tumour that is not cancerous (a low grade brain tumour), then you won’t be able to take part in this survey. However, you can still take part in our Improving Brain Tumour Care (IBTC) surveys. These are open to anybody who’s been diagnosed with any type brain tumour and their loved ones.
How long will it take me to complete?
The survey should take about fifteen minutes to complete.
What areas will the palliative care survey ask about?
The survey asks about different areas of support received by people following their diagnosis. This includes treatment of symptoms and side-effects, as well as the support that was offered and available to them. There will also be an opportunity to share what you think could have improved your experience.
We know that filling out this survey could be difficult and that you’re sharing information that could be quite triggering. If you’re having a difficult time, please don’t hesitate to contact our Support and Information team by calling 0808 800 0004, emailing support@thebraintumourcharity.org or starting a live chat on our website.
How long is the survey open for?
The survey will be open until the end of September.
Where can I fill the survey out?
If you would like to complete the survey and share your experience, you can do so by visiting the link here.
How is my data being shared?
You can answer the survey completely anonymously if you wish. Alternatively, you can include your email when you complete the survey if you’d like to be kept up to date with the progress.
The data you share will be kept securely by the LSCT team and if you have any questions please contact lesssurvivablecancers@principleconsulting.org.uk. For more information about how the LSCT will use your information, please click here.