Welcome to our updated, new format monthly briefing. The information in this newsletter has been customised for you, our key group contacts, to use in your own newsletters and communications with your group members.
We hope you find it useful.
We have listened to you and heard that you want content that is clearer and more accessible. You told us that you wanted links to everything in one place – so within the Monthly Briefing, you can now update your group details, see what the new content is on the Members Portal and with your login details, you can enter the portal by clicking the link in this newsletter.
It has been a busy few weeks at Tackle Central; after several weeks of intense work, we have finally submitted our bid to the National Lottery. The bid for £470,000 over three years, if successful, will continue the work that we started 3 1/2 years ago on increasing the reach and impact of peer support for people diagnosed with and affected by prostate cancer.
Recognising that we need to be more proactive in plugging the gaps in areas and communities where there are no or few peer support opportunities, we want to increase our capacity to work in areas where we have identified the highest need. Our current offer to our member groups will continue, and we will be working with a range of partners across the Midlands, Yorkshire and the North East. Should we be successful, we will be recruiting two new Peer Support Coordinators to work in these areas.
They say sleep is overrated, which is good, as we are straight on to our next funding application. This time with Movember, for an equity grant to develop our Peer Coaching model. Several of you have taken part in training over the past couple of years, and we know what a valuable service this can be. We will continue to offer training to people interested in supporting people through their diagnosis, and we shall also look to support workplaces to make sure that employees are able to support colleagues diagnosed with or impacted by prostate cancer.
None of this work could have happened without you all. The survey we asked you to send to your members resulted in almost 500 responses. This included almost 1200 lines of narrative and quotes, which, thanks to the incredible skills of Martin Wells, have been analyzed with an AI he built for us. Thanks to Martin, the rich data that we have been able to extract from the survey tells an important and compelling story and highlights the value of the peer support groups you provide. If any group would like to learn more about the benefits of using AI to promote their group, Martin would be happy to answer your questions. The quote below sums up why what we all do matters.
‘Joining the support group has helped me with dealing and managing my emotional, mental, and physical health positively. I feel supported, listened too, and cared by our members and I can provide that support back to our members too. Being part of the group takes away the feeling of loneliness in dealing with the disease. Being in the group allows us to talk openly about our worries, anxieties and the difficulties we face with treatments and side effects. This provides knowledge and great comfort. The Prostate cancer peer support group is very important to us. We are getting new members all the time who need this service. Hope that this group continues and gets stronger.’
Hot Topics in the News
This month’s Hot Topics contains information you may find useful on the recent National Prostate Cancer Audit. This is a national clinical audit of the quality of services and care provided to men with prostate cancer in England and Wales. Data is analysed and compared to see if hospitals are following national clinical standards and where improvements can be made. Findings are used to help define new standards and to help NHS hospitals improve the care they provide to patients with prostate cancer, and can be used by patient groups to start conversations with their care providers and cancer alliances. Do get in touch with Sarah or Aidan for any help with this.
Download this month’s Hot Topics here
Support Group Leaders Meeting
At our February Support Group Leaders, we were joined by 38 support group leaders and organisers, including a few who had previously not attended. We heard from David James, from Prostate Cancer Research on progress on their Infopool and forthcoming the Prostate Progress project. Below, you will find a link to a slide set should you want to share the details with your group members.
David also mentioned the new printed material that you can order. If support group leaders would like to order any materials for their support groups, they simply need to complete this form (which also includes example links of what can be ordered)
At our next Support Group Leaders meeting on March 6th at 11.00 am, we shall hear from Darren Breen from iMedicare about the support they can provide your members with erectile dysfunction and incontinence. The Zoom link and reminder will be sent out nearer the time.
If you would like to raise anything at the meeting, please get in touch with Sarah.
Events
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Life on ADT’ (Androgen Deprivation therapy) classes
The course in partnership with the European Association of Urology (EAU),is free and you can register wherever you receive your treatment. We recently caught up with the wonderful Louisa Fleure, who is a Consultant Nurse at Guy’s and St Thomas’ NHS Foundation Trust. Louisa has been running a course for men who are on or due to start, hormone therapy. This is being run by a number of centres, including through the specialist nurses at PCUK. The course can help you:
- Learn about managing your side effects
- Give you the opportunity to ask the experts questions
- Meet others in the same boat as you
Attendees receive a free book upon completion of the session, and people partners can join too.
Please share this valuable information and link with your group members.
Sign up or share this link by clicking on this link here
Members Portal
The resources on our Member’s Portal is growing!
New this month…
Resources
🌟 Information on Data Protection/GDPR
How to Guides
🌟 Scheduling your support group meetings across a year
Promotional Resources
🌟 Facebook cover images – 4 different versions!
To access these resources and more, log into the members portal.
Member Group Spotlight
This month our spotlight shines to illuminate the Isle of Wight Prostate Cancer Support Group. The idea of IWPCSG was born by a small group of men in 2011 who were travelling each day to QA hospital in Portsmouth for their treatment for prostate cancer. During those difficult and worrisome times, this group recognised the huge benefit they gained from being in a group and being able to support each other at a very difficult time in their lives. They also recognised that future patients would undoubtedly also benefit from a similar level of support. In particular, their experience, knowledge and reassurance would help guide future patients. The idea of IWPCSG was born!
Recognising that many men on the island were diagnosed with Stage 4 prostate cancer, IWPCSG has not only provided support to people diagnosed with and impacted by prostate cancer, but they also provide widespread access to PSA blood testing events across the island. In 2023, they ran seven PSA blood testing events and tested 1,994 men of which 191 received abnormal results and were followed up by their GP.
We recently asked the hardworking and brilliant Alan Taylor to give us his top tips on running a successful event. However, Alan went one better than a simple list and has produced an excellent podcast explaining in detail how you can run a community PSA blood testing event. You can listen by following this link here.
Alan’s Top Tips
1. Nominate an organiser and administrator.
2. Arrange a venue and date.
3. Arrange finance.
4. Sort out insurance.
5. Find a bank of Phlebotomists.
6. Book a pathology laboratory.
7. Organise a booking appointment system.
8. Purchase equipment and supplies.
9. Gather a list of available volunteers.
10. Provide a courier to transport blood samples.
11. Promote the event.
12. Arrange for safe recycling of needles.
13. Complete risk assessment.
14. Provide effective communication around the venue.
15. Ensure Wi-Fi is available at the venue.
Around 10% of the groups in our federation run their own community PSA blood testing events, with a similar number supporting other organisations, such as Lions Clubs, to run events. Running a PSA blood testing event is a complex task. Ensuring that men are booked into a digital system and receive important pre-testing information and are not lost on a paper system is crucial to providing a safe process. There are organisations that provide and the majority use the services of the Graham Fulford Charitable Trust.
Tackle Conference
Registration is now open for the 2024 Tackle Conference – Together We Tackle: Peer Support: Let’s Talk About It.
▶️ Tuesday, 16th April 2024, 10:15 am – 4:30 pm (Registration opens at 9:30 am)
Please click here or on the button below to complete your registration via Eventbrite. It is important to complete all the requested information in full. Included in Eventbrite are details for the day, including information on hotels and parking.
Please complete your registration no later than 16th February. Due to the growth of the number of Tackle Member Groups over the past year, registration is only available for one delegate from each group. We are creating a waitlist for those groups who would like to have an additional member attend. Please click here if you would like to add someone from your group to our waitlist. We are hopeful that we will be able to accommodate everyone who wants to attend.
If you have any questions about the conference, please email us!
