StriveForFive

Not my usual Monday night!
Watch this space for more information over the coming days!

Busy week #RepresentingPatients

It started in Manchester on the faculty for Junior Investigator Network Group for new researchers

Friday I was in London for an energetic and far reaching round table on trust in healthcare.

Now for cuddling up with my scruffy mutt Tommy!

The fact that some scientific journals are now receptive to patients as lead authors reflects the growing recognition of the value of people with lived experience of their disease 2/2

Improving preclinical and clinical oncology research through patient integration Over the past few decades, patient centricity has evolved from an idea to a clearly defined component of cancer care, integrated into clinical practice: patients with cancer are now more involved i...

I'm proud to share my first paper as lead author, on the vital topic of INTEGRATING PATIENTS INTO PRECLINICAL AND CLINICAL RESEARCH.

This is an example of how I'm trying to improve cancer care. #RepresentingPatients

You can read the full paper here:

doi.org/10.1080/0300...

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Petition: Fund free dental care for head & neck cancer patients We want the Government to fund free dental care for head and neck cancer patients both during and after treatment to address the significant oral health challenges that survivors may face, and to impr...

Please join me in signing this petition asking the NHS to fund free dental care for people who have head & neck cancer.

Surely this is a no-brainer for the government?

petition.parliament.uk/petitions/74...

Making your research better: a patient perspective - Cancer Research UK - Cancer News Steve Clark tells us why patient involvement is so much more than just a requirement - it can actually bolster your research in surprising ways...

I was honoured to be invited to write this piece for Cancer Research UK Science and Innovation, sharing how lived experience can positively shape research - a topic I'm passionate about!

#RepresentingPatients
#PatientEngagement

news.cancerresearchuk.org/2026/01/15/m...

How long does it take to achieve change - it took 11 years to get Avastin approved for NHS prescription for bowel cancer! We eventually got it over the line just before Christmas.

The key factors are determination, resilience and teamwork

This was my entry to campaigning

I’m excited to be #RepresentingPatients at the 8th Patient Centricity & Collaboration Congress 2026 Europe in London on 25 and 26 February.

My topic is one I’m passionate about: IMPROVING COMMUNICATION IN HEALTHCARE NEEDS A COLLABORATIVE SOLUTION

Who’ll be there?

#PCCWC26

12 years ago I had a fab party go say thank you to all the friends and family who helped me get through my stage 4 diagnosis, surgery and intensive chemo.

I couldn’t have done it without their amazing help and support.

A great time was had by all and it was my first time singing with the band!

Merry Christmas, especially for everyone going through chemo right now
Christmas is a great time but can be overwhelming when on treatment, so take time out when you need to, but don’t lock yourself away
Laughter truly is great medicine - remember to have fun!
MERRY CHRISTMAS 🎄

Sharing a fond memory - in 2014, a year after being diagnosed with stage 4 bowel cancer, I passed the Budokon MMA red belt

This shows that A DIAGNOSIS OF STAGE 4 CANCER DOESN’T HAVE TO BE THE END OF YOUR LIFE, IT CAN BE THE REASON TO START LIVING IT!

90% of cancers happen in people over 50. @nature.com has an interesting edition focussing on cancer in OVER 50s
- why do risks of getting cancer increase with age
- how does cancer treatment affect aging process
- how do cancer treatments affect different age groups
www.nature.com/articles/s41...

I now face the wait for the results. Some patients find he wait for scan results tough so I addressed this in a patient tip on my not for profit webpage, the tip is attached and you can find more on how I support people with stage 4 cancer on StriveForFive.org
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Managed to time my scan day with Donald Trump’s visit to Windsor. And I thought they were laying out the red carpet for me 😁 Despite all the disruption the scan went well today.
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ne thing about being a patient engagement consultant and patient advocate who is living life with a serious disease, is that I have to jump through certain hoops every now and again, and regular CT scans are part of this.

However I've never had a CT with pomp and circumstance!
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Watch this space for an article calling for change in this area.
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I presented about the need for a more sophisticated approach to HTAs, tailoring assessments to the real needs of patients rather than forcing everyone into a generic & artificial cost per QALY - so important in this evolving world of rare disease & personalised medicine
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I love being able to champion change for patients by using my patient advocate experience & my pharma expertise. I’m grateful to @AdelphiGroup for inviting me to be part of such a challenging and forward-focussed session in Manchester last week.
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#RepresentingPatients

I'm excited to be presenting "Effective Clinical Communication is Crucial for Patient Empowerment" at next month's conference, it looks like a great two day programme

For more information on the conference: patient-empowerment.com

#PatientEmpowerment25
#RepresentingPatients

Prevention of disease (or "reducing risk") is such an important topic for the future of health and provision of health care.

I was privileged to be part of an expert panel organised by Adelphi Group titled "THE PREVENTION REVOLUTION IN YOUR HEALTHCARE"
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A prevention healthcare revolution: The future of pharma Explore the future of pharma as systems, data, and digital tools revolutionise prevention healthcare. Stay ahead with these industry insights!

One of the privileges of being a Patient Advocate is that I get to #RepresentPatients. Recently I was asked to give the patient perspective on the future of DISEASE PREVENTION

An excellent report has been published HERE:

pharmaphorum.com/patients/pre...
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Proud to have been involved in the GOOD PATIENT PARTNERSHIP GUIDE, a great initiative to encourage pharma to work with patients to help improve health literacy - critically important to help set patients up for treatment success

precisionaq.com/en-gb/good-pat…

#RepresentingPatients

Sometimes I have to remind myself that “living life with stage 4 cancer” is about LIVING LIFE!

Last week I took Tommy on a little tour visiting family & friends then had a few days in the Peak District

Great adventure

#Stage4
#stage4cancer
#LivingLifeWithCancer

And of course, when in Harrogate it’s compulsory to go to Aunt Betty’s Tea Room where I had a yummy Yorkshire Curd Tart!
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This is what the All Fellows meeting is about: “We rely on the best researchers to help us beat cancer. We support you as you transition into the world leaders of tomorrow” ensuring we can continue to lead innovative research long into the future.“
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It was my privilege to #RepresentPatients & share the stage with Patrick McGuire presenting on the importance, relevance and practicalities of Patient Involvement in discovery, pre-clinical and clinical research.
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What a great experience - spent Thursday and Friday in Harrogate with @cancerresearchuk.org for their ALL FELLOWS meeting - an opportunity to meet and network with talented cancer researchers from across the UK.
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#CRUKAllFellows

Here’s a new app giving access to the only bespoke, managed mobile database of bowel disease related research - could be a useful tool for any colorectal cancer patients looking for active studies.

Great initiative from Bowel Research UK and Acpgbi

bowelresearchuk.org/trialsapp/

Panorama - Cancer Conspiracy Theories: Why Did Our Sister Die? Marianna Spring investigates the rise of health conspiracy theories. Are social media companies’ algorithms pushing potentially harmful content at vulnerable patients?

Misinformation is rife around cancer and it’s putting people’s lives at risk

This report on BBC Panorama shines a light on these dangers and is worth a watch

Even Strive for Five is targeted by people peddling fake cures

www.bbc.co.uk/iplayer/epis...

Being in a clinical trial can gain access to the latest treatments and help us all learn more about medicines in development.
The big challenge is often finding out about them - that’s where this site is excellent, best I’ve found:
clinicaltrials.gov