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RTD Patient Community – Notes from our last meeting – next one 2nd Dec at 6pm – to register click the link

Dear RTD Supporter,

Thank you so much to those who attended yesterday evening and a particular thanks to Dr Irene Chong, who was there with news and updates, as well as representing Professor Brown and telling us about the PREVAIL project. Unfortunately, an omission in my invitation list meant that the date did not land in Professor Brown’s diary. She will be with us at our Thank You evening on the 17th November though, so we will hear directly from her. In the meantime, Dr Chong gave us a comprehensive view of PREVAIL.

Highlights from Wednesdays meeting:

PREVAIL: Started, when It was found, during the first wave of Covid, that doctors and patients were infecting each other during endoscopy procedures, through aerosol transmission – testing for the virus was not routine then. The project was set up to assess the risks to the patient of using scans, instead of endoscopies for diagnosis. In fact, using MRI scans earlier in the diagnostic process, or where it is just not possible to do endoscopies for other reasons, leads to an increase in earlier diagnoses, so PREVAIL is now defining and making accessible a standard pathway, initially for Bowel Cancer patients, that begins with early diagnosis and goes through all the steps of cancer staging and treatment options. Its objective is to improve communications between GPs and hospitals, as well as with the patient and wider community in a language that is accessible to all.

RTD’s role in this is to bring the patient voice to the project and to donate the funds to create a video based communication on the PREVAIL pathway that will be easy to consume and provide a road map for patients and their loved ones through their diagnosis and treatment. We also ask you please to speak with your own GPs and ask if they would be willing to receive a very short PREVAIL Questionnaire.

KLOTHO: We have covered this ground breaking RTD funded research before the crisis and now bring the news that it continues with new tissue being freshly stained, so Dr Sachdeva continues the work she began with RTD funding.

News from RMCH: The message that we need to send out is: “WE ARE OPEN”. The first wave of Covid has seen a rise in people, some quite young, presenting with very advanced cancers – Professor Cunningham from the RMCH was interviewed on the BBC to broadcast this message, so please don’t delay your treatment and tell everyone you know that cancer needs to be, and can be, treated right now. RMCH is completely up to date with its patient treatment plans. Dr Chong tells us that there is no waiting time for radiotherapy.

In terms of Covid, the news is that infections are on the increase, and that while there are more admissions than in the first phase, the NHS is in a better place.

Research labs are open – running at 60% capacity to accommodate for social distancing shift work.

Next RTD Initiative: We have talked in the past about developing a mentoring programme for patients. We would like to begin to put that in place and to expand it to include mentoring for friends and loved ones too – they suffer too and providing mentoring for them will not only benefit them but take the pressure off the patients themselves. In doing this, we will be sensitive to match mentors – we have found that young people diagnosed with cancer are often daunted at joining a group like ours, so we will look at how to gently introduce them and into providing some video clips telling them what we are about.

Upcoming RTD Events:

THANK YOU EVENING on the 17th NOVEMBER 2020, which will have a surprise entertainment.

NEXT HAPPY HOUR on the 2nd December 2020 – COME and bring FAMILY and FRIENDS

RTD 2021 LAUNCH on the 21st APRIL 2021

PUT THEM IN YOUR DIARIES – they will be fun.

Join us at our next Happy Hour on the 2nd December from 6.00pm to 7.00pm, with lines opening from 5.45pm.

To register and get joining instructions click: Registration to the Patient Community Meeting

With our normal agenda, of a maximum of 10 minutes each to the first three items, so leaving a good half an hour for number 4 focused on patients:

  1. News of RTD funded research – where there is any to report since last time
  2. News update on practical patient matters, especially from our clinicians, in particular our clinical nurses
  3. Breaking news on any relevant research by the RMCH – where there is any to report since last time
  4. Patient discussion – any tips, useful experiences, initiatives, requests for help with anything

And of course, please let us know what you would like to hear about next time? Let us know and we will do our best to cover it.

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