Glos Cancer Patient Reference Group - update, prehab and call for new members

Sadly I missed this meeting for the photo!

"Health and care partners and people with lived experience of cancer are working together to improve the wellbeing of people in Gloucestershire, reducing the risk of developing cancer, improving early diagnosis and supporting people affected by the disease to live with the impacts".

So back in I think 2020 I joined the Cancer Patient Reference Group for Gloucestershire (see blog here). When I joined I was a little disappointed as it seemed to be weighted towards reviewing new leaflets from Glos cancer services - I wasn't so interested in that and was hoping we could get much more involved with developing and improving services. We have since redrafted the terms of reference and the group has been more active.

One of the projects close to my heart is exercise - I've written previously a number of times as the evidence is so strong about its impact on our health. I wasn't told any of that when I was diagnosed  - even though there had been a new scheme, 'Next Steps', aimed at those who had finished treatment. I was fortunate to hear about it and joined 'late' (see blog here) - however still folks in Glos are being diagnosed and not getting to hear about the scheme. The Cancer Patient Reference Group has regularly had updates on the project and supported the team when they went for more permanent funding. Things are getting better.

The other part of this improvements to exercise was our call in the group for Prehab - the evidence for it is so strong - see Macmillian's image - this call
was welcomed as staff were already trying to establish a project. It has now been running a while - I've been pretty useless at blogging on this! Anyhow I attended several of the sessions and sat in on a long office session to help improve the existing talk to groups of newly diagnosed patients - a talk which now includes an exercise session. 

In my view the talk is too long and still too strongly wedded to a traditional conventional approach. For example when I was diagnosed I was told that sugar was fine to eat and a 'myth' that it impacted on cancer - now the talk at least raises a question mark over sugar. It seems extraordinary that the NHS is not moving with the growing evidence - even the NHS App actually promotes ultra-processed foods (see my blog here)!! For me the evidence is clear enough - not peer reviewed as who can test that - but we know from research that a high intake in sugar can suppress white blood cells by up to 50% for up to 5 hours after consumption! While I do now eat refined sugar I do try to avoid it and use alternatives where possible - certainly my consumption of it is a fraction of what it used to be before diagnosis - and then I thought my diet wasn't too bad!!

Anyhow the Glos Prehab talk covers diet, mental health, exercise and more - my hope is we can perhaps have the info online in videos or other formats as 2 hours is too much for many to take in when newly diagnosed. See Glos Prehab Service referral details at: https://www.gloshospitals.nhs.uk/your-visit/patient-information-leaflets/referral-to-the-prehabilitation-service/

Another project that several members of the Cancer Patient Reference Group got involved with is trying to improve info about those with cancer returning to work after treatment. You can see more about that plus how to join the group - yes we need new members! See more: https://getinvolved.glos.nhs.uk/cancer

There is also a national a regional group - for the South West group see details at: https://www.swagcanceralliance.nhs.uk/cag-cancer-alliance-clinical-advisory-groups/