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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:

KatieR

Ive just updated my profile When you mention networking between hospitals ....
John was readmitted after his APR Op due to a build up of fluid under the would
The wound was incised and A Vac Drain fitted to apply Negative Pressure Wound Therapy
After a few days he was told he could go home but not until the Community Nurses have a Portable Vacuum pump At our house ready to use . . . .
Although our postal address is Preston our village comes under Blackpool
Preston would not discharge John un till the pump and special dressings were physically at our house
But the TV team and Community Team wanted a full comprehensive report about Johns wound
Then announced they would not even Order the machine until John was Discharged and that it may take ‘ several weeks to organise ‘ ! !
It was a nightmare Its bad enough being in hospital but to be kept in hospital when you have been told you can go home is just horrible,miserable and totally frustrating
I spent days on the phone trying to sort it out
Eventually I got hold of a lady from PALS Who got it all sorted in 12 hours
Over Eight Days we spent stuck on the Ward ...Eight long long days . . .
This was a post operation disaster . .
However ...Our Cancer Care Diagnosis Treatment Operations etc etc were Great
Our Consultant Colo-Rectal Surgeon and Specialist Nurses were Marvellous.. looked after us like we were family.. very Organised .....After all the tests we went in for the big talk The Consultant went through all the results and explained the plan of our treatment Very clearly There was no rush or big words that we did not understand He went through and explained Everything and then gave us a folder ....
When he left our Specialist Nurse explained it all again Then went through the folder with us ...Every appointment was listed Dates times reasons All the blood test forms were there and a list of the telephone appointments that the Oncologist would be making to go thru the results of the blood tests and generally check on how the Radiotherapy and Chemotherapy sessions were going Plus we had appointments to see her every Wednesday after the Radiotherapy session ...
They were just mega organised and it made us feel so safe and secure ...in good hands !
Ive never been so impressed with anything...ever They really treated us like we were Royalty
The next most impressive thing is the fantastic help and support we have received from our new family at Bowel Cancer Uk Forum
We would have never got through the last year without them./ you .
Having the support of expert people who know what you are going through is Priceless....❤️

Bridget55

Hi @Bear G as mentioned before I think this addresses this subject extremely well. The only thing I would add is that the psychological fall out of badly handled news is enormous and then increases the need for the specialist psychologists to mop up the damage. So it is in nhs interest to reduce this unnecessary fall out. Great it's being taken forward. Fabulous :x:

Bear G

Thank you for your replies @Barbara @david watt @Sasa @Calleyh @Hans @angelj @Terrish @george1960 @KatieR @Bridget55

Your comments are fab and I’ll try to implement as many as I can.

The current version was filmed by the old Beating Bowel Cancer team on an iPhone and edited in house so we were very restricted, the new version should be better in terms of seeing slides etc. Additionally, we’re going to film it so it can be viewed either as the whole thing or in 3 sections.

The thing around personalised treatment is relatively new and certainly wasn’t around when I wrote the original, I’ll work with the charity on that.

I hadn’t heard of BCI so will have a look at them.

I use Avastin as an example of what I feel is unethical inequality - a proven and licensed treatment available to private patients but not at all on the nhs, so people who could benefit from it are denied it. Are there any other examples?
I do also highlight the crazy situation with things like panitunimab only being for one course.

I’ll also be recommending a follow up appointment with a specialist nurse a few days after diagnosis to allow for more info to be discussed, this would be the ideal time to introduce BCUK and this forum.

Thanks again and please keep it coming. I’ll be trying to rewrite it this week.

Big hugs
Bear
:x::x:

KatieR

Im sorry I rambled on ( as usual !) The point I was trying to make was The Consultant says ..You can go home .....with the pump ...but he has no idea how the portable home Pump is procured
Cath :x::x:

Bear G

Ha ha @KatieR , you didn’t ramble on, it’s one helluva story! The whole thing about joined-up care is key!
:x::x:

Calleyh

...and as I know virtually nothing as I start my first treatment next week, I stuck to what I did know about, i.e. training, e-learning and getting information across. Good luck with the new project.

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💛💜💚💙❤️