Stage 4 bowel cancer

Bear G

Input please - How to improve care?

I’ve been asked to refilm the IMPACT video and would appreciate your input. I gave this presentation almost 2 years ago and it may need updating, what are your thought?

The focus is how to improve care of people diagnosed with advanced (stage 4) Bowel Cancer. I split this into three areas of focus:

1. Consistency of care and networking between hospitals;
2. Fair access to innovative new therapies;
3. Language and outlook of doctors and nurses.

I’ll be filming this soon at University of East Anglia as they’ll use it for their new online course for specialist nurses, it’ll also be available for the charity and Strive for Five to use.

I should say that the main objective of the presentation is to be thought provoking to healthcare professionals. It’s holed that it will also be helpful to people facing bowel cancer.

Here’s the link to the current version:


(If this link isn’t working please try the one in the comments below)

Thank you
:x::x:

Lirio345

Hi @Bear G, I have just a few tiny observations ........ but I do really think this is a very strong presentation.
1. Slide ‘Access’, I am suggesting using Cetuximab and Panitumumab as named examples of problems with gaps in funding, - then there are KRAS wild type and mutant examples given as coming under unethical practices/rules, and their use are becoming more widespread.
2. As someone who has a stoma I agree that it is important that they are only created if necessary, but I do feel that stomas should be presented in a positive way if they are needed. They are an important feature of bowel surgery in many cases and in 99% of cases stomas are very manageable and in my case greatly improved the quality of my life. They are often subtly presented as a negative thing.
3. I agree with the comments that the PowerPoint slides might usefully be continuously visible/readable, but my Lecturer hat would urge that the amount of text on each slide is certainly not increased, and might be usefully decreased on some slides, especially if the presentation is going to be divided into three parts.
I do stress though that I think the presentation and its messages are spot on and really important to share, Kim :x::x:

Bear G

I do appreciate the pointers @Calleyh and hope the revamped version can be an improvement.
To both yours and @Lirio345’s comments, the current version was written for a meeting with doctors and just filmed for a project with the charity that never happened.

I’ll try to work in your other points too Kim. Thank you for your kind comments.

:x::x:

Calleyh

I agree with @Lirio345 on the amount of text too. Also, suggest that you don’t use anything smaller than a 24 size font otherwise it can be hard to read. You also need to test it on the commonest and smallest possible display methods (computer/iPad/mobile) as it may not be readable there. Then you could increase the font size if appropriate.

It was a really interesting presentation. I shall look forward to seeing the next version.

Barbara

Isn’t keytruda another example of a drug that’s only available privately @Bear G Think @david watt is pay8ng for it. Slightly different as I think it probably will be approved for the limited number of people it will benefit - but they can’t hang on in the hope it will be available eventually. Different to avastin in that I think there are biomarkers for it. I guess the other issue with avastin is that there is nothing for those who are RAS mutant and it might help. If the6 were wild type they (me) would be eligible for other drugs. Does this make sense?

Sasa

Mark has had his treatment privately and has also had access to Avastin, but this works both ways... as his oncologist works NHS 4 days a week and privately 1 day. So NHS patients have a four times greater availability for access, questions and treatment than Mark. This has tripped us up several times and I do wonder if it’s worth it being private.

Another thought-provoking issue is our natural assumption that a ‘successful operation ‘ means that we are ‘cured’ of cancer which we cannot know. I’ve seen it on here when people have said they’ve been cured from stage 4 cancer due to a successful operation to remove the tumours. This raises important ethical questions about what medics say to them. This happened to a good friend of mine. He thought he was ‘cured’ and went round telling everyone that he was, and he was dead within a year. Needless to say he was utterly broken when he believed he had been unlucky enough to get cancer twice, but in reality the surgery had not cured him

Sarah :x:

Bear G

Hi @Barbara
Just checked and Keytruda isn’t actually licensed for bowel cancer in the U.K., I know quite a few doctors use it because the data is good but it’s off label at the moment.
I agree with you, for those of us with the specific RAS then it’s the only option beyond traditional chemo.
:x::x:

Bear G

Hi @Sasa
Yes, the whole thing around being ‘cured’ remains an issue. However, I hadn’t come across it being used much in stage 4, more generally it’s ‘NED’ or a ‘clear scan’ which I guess could be misinterpreted.
I do feel that the bigger issue in general is the bleak outlook that many doctors project around stage 4 and the need to take a ‘cautiously optimistic’ stance, this is based on lots of comments I see on here over the years. Would you agree?
:x::x:

Baxter2

Hi @Bear G

I loved the presentation and don't think you need to change very much at all. I appreciate the input from others who have direct experience of public speaking and lecturing though.

It's my view that the main objectives listed 1,2, and 3 are the ones to stick to and will have greatest impact to viewers. These points are VITAL to how we all process our new diagnosis and move forward positively and with a realistic optimism. Many of us (myself included) have experienced the opposite and it's absolutely detrimental to our mental health and wellbeing. It was suggested I may have PTSD busy a doctor recently following the negative rhetoric from my initial oncologist. I'm not sure about that label, but it certainly pretty much destroyed me and my spirit.

I'm not sure it's ideal to get into different drugs, 'maintenance chemo' 'rules' 'nice guidelines, 'cures', 'remission' etc as these change rapidly and the presentation will very quickly be out dated.

Good luck in this venture! Great work!

Karen :x::x:

Bear G

Thank you Karen @Baxter2 , interestingly, the lecturer who approached me would’ve just used the current version if there wasn’t an issue with the sound.
:x::x:

Gypsy

I agree with @Baxter2 . The only point I would make is the absolute need to leave people with 'hope' and for the doctors not to destroy that in their keen-ness to make some patients think that there isn't any. They have to understand how people hang onto and analyse every single word afterwards and how often words cause so much fear and distress.
I thought that the initial presentation was great and I appreciate you doing it again @Bear G . :x:

Mattanya

Hi Bear G

I got sent the link to your video on Twitter - didn't realise you were one and the same person! My original tweet was about the language used at point of diagnosis (palliative, incurable etc.) which you cover brilliantly in the video and I hope will keep in the re-filmed version. I really likes your point about clinicians needing to be honest about what they do and don't know about how effective treatment might be. My husband was given a prognosis of 18 months - 2 years without treatment and has just passed the 2 years mark. And we have stopped asking for time-scales. The other related point within this is that treatments that were not initially available or appropriate can become so if response to treatment has been good... but that can be confusing for patient or family and could be better explained. Otherwise it can seem that a course of action has just occurred to the oncology team, in a rather random way.

In terms of the inequity of availability of drugs and treatment (both private and NHS postcode lottery), I get really cross about this (and used to work in that world so know something of it from the inside). Like you, my husband has private health care through work and has been able to access Avastin and ablation because of this. That is so wrong (and obviously we will take the treatment) because the treatments aren't widely available.

Hope these points are helpful, happy to say more. I thought the video was great and mirrored many of our experiences and thoughts.

Bear G

Thank you for the lovely comments @Mattanya, What's your Twitter name?
Thank you for sharing your story here and please rest assured that improving communication remains one of the main themes within the new presentation as does access to innovative treatments.

Thank you again to everyone for taking the time to feed back on this, the slides have now been updated and reformatted, I'm going through them with thecharity in tghe morning and will be filming on Tuesday morning (please keep ypour fingers crossed it goes well, talking to camera isn't my forte).

Big hugs
Bear
:x::x:

Lirio345

It is brilliant to hear how quickly this is moving forwards @Bear G, and you do not come over on the first video as someone whose forte is not talking to camera! Kim :x::x:

Baxter2

Ditto!! @Bear G

Interestingly, I noted Deborah James' Aka 'bowelbabe' presented something which sounded similar to students at the Marsden hospital yesterday! Isn't it great that this incredibly important message is being heard!?

Keep up the good work bear! We're all so grateful for all you do!

Karen💛💜💚💙❤️

Jane39

@Bear G . I thought this presentation was excellent. It covers all the issues that I am experiencing since a stage 4 diagnosis . Language use , drug access , drug eligibility rules . Having some positivity but realistic conversation from our oncologists is vital to our wellbeing and provides resilience to take the treatments Thank you :x:

Bear G

Thank you for that feedback @Jane39
I filmed the updated video yesterday and all these points are still in.
I’m glad the video helped but really sorry you’ve gone through all this.
Big hugs
Bear
:x::x:

Bear G

Hi all - filmed the updated video yesterday and all went well. Not sure how long they’ll take in editing but hope to circulate it soon.
Have to apologise @Barbara , every run through I did I referenced BCI but completely forgot on the day!

:x::x:

Barbara

@Bear G No worries!

Bridget55

Great news @Bear G look forward to seeing the update. Well done. No mean feat :x:

Mattanya
Quote from @Bear G:
Thank you for the lovely comments @Mattanya, What's your Twitter name?
Thank you for sharing your story here and please rest assured that improving communication remains one of the main themes within the new presentation as does access to innovative treatments.

Thank you again to everyone for taking the time to feed back on this, the slides have now been updated and reformatted, I'm going through them with thecharity in tghe morning and will be filming on Tuesday morning (please keep ypour fingers crossed it goes well, talking to camera isn't my forte).

Big hugs
Bear

Hi Bear, Sorry haven't logged on for a little while. I'm @TanyaProcter. Happy World Cancer Day!