On behalf of Pseudomyxoma Survivor and our commitment to provide advice and promote advocacy, Kirsten and I both attended the latest Cancer 52 members meeting in London in July 2017.
Cancer52 is an alliance of 90 organisations, within the UK, working to address inequality and improve outcomes for patients with highly challenging disease, such as ours. Research showed 52 percent of UK cancer deaths are from the less common cancers — more recent research show that has risen to 54percent. I don’t think Cancer 52 are going to change their name anytime soon to reflect this, though they are looking to become a registered charity later this year.
Despite the fact that the less common cancers are actually combined the ‘majority’ less common cancers remain severely under-represented and under-funded across all areas, including policy, services and research.
The meeting was well attended and seeing the lovely Jane Lyons, CEO, again made the long trip really worthwhile for both Kirsten and myself. Hugs aplenty!!
Agenda points were as follows;
- Andy Murphy, Head of Datasets, National Cancer Registration and Analysis Service (NCRAS) presented on NCRAS data sources used for registration, the data liaison work with Trusts, update on rare cancer data collection and an overview of the Cancerstats portal.
This service is producing stats on the rare cancers – taking their information from PET scans, hospital departments, death certificates etc. to establish individual stats for each disease. I may need to investigate this one further, for although they are looking at the rare cancers, ours is rarer still and when we mentioned PMP I’m not convinced that we yet appear…
- Rupi Dev, National Programme of Care Manager – Cancer, NHS England Specialised Commissioning, updated us on progress on the rarer cancer MDT recommendation 40 from the Cancer Strategy.
An issue that was raised by a few members, including ourselves, was the referral process from primary to secondary care and in particular the referral to the special centres themselves. This does not appear to be a priority in the short term.
- Emma Logan, Campaign Team Lead – Ageing Well, PHE and Amanda Boughey, Programme Lead – Early Diagnosis, Cancer Research UK, both explained the Be Clear on Cancer Abdominal Symptoms campaign which will be launched in the Midlands later this year.This looks to be a promising campaign, with quite a few TV commercials planned, that will hopefully encourage those with abdominal symptoms such as pain, bloating, diarrhoea etc to go to their doctor as it may be a sign of cancer. Anything that gets people talking about these issues must help.
Of course the lovely Audrey, the PMP Unicorn also joined us on our travels; meeting Kirsten and Jane, she couldn’t ask for better company.
Trustee, Chair of the board of Trustees
Involved with the charity since the beginning, Kirsten has a passion for the impact of pseudomyxoma peritonei (PMP), and rare disease more generally, on young carers.