'You said.... we did' (or plan to do) Newsletter
In 2024 we did a Cancer Information & Support Survey that we had designed with the Patient Led Steering Group and the Macmillan Information & Support Centres in Northamptonshire.
We had 454 responses and heard from all patients, relatives and carers with different experiences from across Northamptonshire.
We discussed the results with the Patient Led Steering Group and here is what we have done or plan to do.
A HUGE thank you to all those involved in the
Patient Led Steering Group so far,
we couldn't have achieved this without you.
Financial
Info & Support Text Message
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Walking
Increase Awareness
Primary Care
Site Specific Support Group
Reaching Marginalised Groups
Financial
You said....
“It passed more than 6 months after diagnosed by cancer, I didn't get any benefit or financial support from county council or pension credits”
Only 33% of respondents felt that they had the right amount of information about Citizens Advice and possible benefits.
43% of respondents didn’t know about Macmillan Citizens Advice & benefits.
94% of those that had used Macmillan Citizens Advice service found it ok, helpful or very helpful.
57% of survey respondents said they would use a Macmillan Citizen's Advice Clinic if it was in a community setting.
... We did (or plan to do)
We have updated the Financial Information Videos on YouTube
We held 2 Live Financial Information Question & Answer sessions:
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18th March 2025
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9th June 2025
We were hoping to run some extra Cancer Citizen's sessions in Community Setting but this is not possible at the moment.
We have included links to local CItizen's Advice sessions in our Health & Wellbeing Prospectus so that people have more choice about how they access this service.
Walking
You said....
“Walk and talk would always be my first choice, being able to meet and chat with people out in nature.”
51% of respondents would use Cancer Walking Groups.
43% of respondents reported that they would use a Wellbeing Walking Group that was not specific to Cancer.
... We did (or plan to do)
We have increased the Daventry Wellbeing Walk from monthly to weekly from February 2025.
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Daventry Country Park. Daventry NN11 2JB.
Meets every Wednesday excluding bank holidays at 10am (Meeting point by the Playground).
Macmillan Health & Wellbeing Event Programme
We have also offered the opportunity for Primary Care Cancer Champions to be trained up to become Wellbeing Walk Leaders. Some have started a Wellbeing Walk of their own and hopefully more will follow.
Primary Care
You said....
80% of respondents said they would access Cancer Information and Support at Local Doctors Surgery.
In a separate survey of Doctors Surgeries, 86% of Practice Managers said they would like to provide more Cancer Information at their Surgery.
“It would be great to have information in Supermarket Pharmacies.”
67% of respondents said they would access written Cancer Information at Local Pharmacy.
... We did (or plan to do)
The Primary Care Cancer Champions Scheme was set up in July 2024 just before the survey. The results of the survey reiterated that this was something that patients and carers wanted as 80% of respondents said that they would access Cancer Information and Support at their local doctors surgery and this was second only to accessing it at the hospital.
in October 2025, 75% of doctors surgeries across Northamptonshire have a Primary Care Cancer Champion.
They offer information, face to face or telephone support and signposting and some now offer Support Groups or Wellbeing Walks. Get in touch with your doctors surgery and ask if they have a Primary Care Cancer Champion yet.
Click here to read more about the Primary Care Cancer Champions
We have extended the Primary Care Cancer Champions Scheme to Pharmacies across Northamptonshire.
The role will be slightly different as they will be providing Information booklets and signposting, not offering support as many of the current Primary Care Cancer Champions do.
Reaching Marginalised Groups
You said....
“I think our community centres and community churches will work best to access information”
Black and Asian respondents reported more barriers to accessing Information & Support than White British respondents.
... We did (or plan to do)
We worked with Gilead Sciences to organise a screening of Unseen Unheard that took place on 10th July 2025 in Wellingborough African Caribbean Association. There was around 75 people in attendance, healthcare professionals, people with lived experience of breast cancer, members from the local black community and people with an interest
in tackling health inequities.
To find out more about the play and the amazing work that Black Women Rising are doing please click here: Breaking Barriers: The Powerful Play ‘Unseen Unheard’ Gives Voice to Black Women with Breast Cancer
We are hoping to work with The Power of The Mind Network in Wellingborough, which is a Social Inclusion organisation to find out what the community want for Cancer Information & Support.
Power of the Mind Networks | Storytelling Community
We plan to include more people from marginalised groups in our videos on the YouTube Channel.
Info & Support Text message
You said....
“I think it would have been helpful if someone had contacted me rather than me having to reach out”
In the Cancer Informaiton & Support Survey, there were many free text comments about being contacted by phone to inform them of what support was available would be helpful.
... We did (or plan to do)
When discussing this with our Patient Led Steering Group about how we could manage to make the phone calls to patients as staffing levels do not allow for this, a member of the group suggested that we could send out an introductory text message instead of a phone call, possibly offering a call back if they wanted it.
This is a great idea and we are working with our IT teams to be able to send out text messages. We hope to then have a link to an introductory video about the Information & Support that is available at the Macmillan Information & Support Centres in Northamptonshire.
This should be in place by the end of 2025.
Increase Awareness
You said....
“If I knew of support available, I would have accessed them.”
Only 23% of respondents were aware of the YouTube channel. 63% of respondents reported would use it.
31% of respondents reported 'not knowing what is available' was a barrier to accessing Information & Support.
There was a total of 715 votes for which slogan should be on a new teapot shaped leaflet and the winner, with 46% of the vote was:
'There is always a brew...
...waiting for you.'
... We did (or plan to do)
We have now printed and distributed the new Teapot design leaflet with the slogan 'There is always a Brew.... waiting for you' that was voted for.
In December 2024 we did a presentation to staff at Northamptonshire Healthcare Foundation Trust (NHFT) which is the Community & Mental Health NHS Trust in Northamptonshire.
The presentation covered:
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The impact of a Cancer diagnosis
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The role of a Cancer Clinical Nurse Specialist
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What is Personalised Care
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Finances & Citizen's Advice Support available
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Work Rights & how support staff at work Click here for Macmillan at Work | Macmillan Cancer Support
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ExTRa (Explore, Tour & Reassure)
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Side Effects of Treatment
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Supporting Carers Click here for Northamptonshire Carers
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Health & Wellbeing Prospectus Click here
Macmillan Health & Wellbeing Event Programme -
Macmillan Information Outreach Project
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Primary Care Cancer Champions Click here to find out more
We have presented to HR at Northampton General Hospital and Kettering General Hospital so that they know what is available. We are developing an e-learning package for staff affected by Cancer and for manager so that they know what is available to them.
We are also looking into ways to increase awareness of the YouTube channel:
Welcome to the Northants Cancer Information Hub
One of the things we are looking at is Search Engine Optimisation which is is the name given to work that makes sure more people find your website in Google™ and the other major search engines.
Site Specific Support Groups
You said....
“The Breast Friends group is great.”
“We've attended a couple of meetings at Northampton Prostate Cancer Group, which we've found useful.”
80% of respondents who have used Local Cancer Site Specific Support Groups found them helpful or very helpful.
... We did (or plan to do)
Northampton's Head & Neck Radiographer, Maz, is President of The Swallows Head & Neck Cancer Charity for 2025. This will hopefully lead to a Head & Neck Cancer Support Group in Northamptonshire.
Click here for more about The Swallows Head & Neck Cancer Support
The Personalised Care Leads in Northamptonshire will work with Cancer Clinical Nurse Specialists to see what support they can offer to patients at the end of their treatment.
Northampton are getting a Maggie's towards the end of 2025. When they are up and running we can work with the Maggie's team to see what Site Specific Cancer Support Groups could be set up.
Click here to for more about Maggie's, Northampton