Following on from the two successful patient days held at Basingstoke Hospital and The Christie, I have been busy attending meetings with Cancer52, Eurordis, National Voices and I secured a bursary place at the Public Health England Conference in Manchester in June. All on behalf of and for Pseudomyxoma Survivor.
There has been lots of discussions on patient data, clinical trials (and in particular NICE technology appraisals and early access to drugs) and the 10 year Cancer Strategy and Plan. Personalised health budgets and care have also been discussed.
I couldn’t quite believe that through the Get Data Out Project it will be possible to have statistics for appendix cancers in England – a request for me to chase. So whilst the different types of cancer of the appendix, PMP, signet cell etc cannot be listed separately (mainly for fear of individually recognising a patient) we can finally have an indication of the occurrence of appendix cancers in England.
There will be a greater emphasis going forward on the NHS and voluntary sector working better together and the importance of us patient groups has been seen as equal partners in the decision-making process and not merely ‘add-ons’.
I would add that the 10 year cancer strategy is delivering in lots of areas, however, the rare and less common cancers did not have much input into its development. So as part of the work at Cancer52, we have been looking at what we might add if we are allowed input into the next national strategy.
I believe (perhaps inadvertently) that the trial centres for multi-diagnostics will certainly help earlier diagnosis of the rarer cancers and we might finally be in a position where people do not ‘ping’ backwards and forwards waiting for a diagnosis. I’m looking forward to visiting one near me in October.
Phew, lots of information there! I’ve given just a summary of the developments that are happening – we will keep pushing to be heard, as Cancer 52 say “We are the voice of the rare and less common cancers” and I’ll continue to act as the voice of all Pseudomyxoma Survivors.
– Susan, Chair of Pseudomyxoma Survivor