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Welcome to August's Volunteer Network News
Welcome to your August edition of VNN.
We hope you’ve been enjoying some sunshine and vitamin D in amongst the showers and windy weather. In this edition, we look ahead to 2025 with ideas for your support group programme and invite you to join us for a series of new networking meetings.
We also hear from volunteers about some recent presentations to the fundraising team and being part of the approval process for a new osteoporosis drug treatment. If you have a news story or update you’d like to share in the next edition of VNN, please email us at volunteerengagement@theros.org.uk
Happy reading,
Helen, Fiona, and Lorna
Your ROS Volunteering and Public Engagement team
Looking ahead to 2025
With just over four months left in the year, many of you are starting to think ahead to 2025 and planning dates for next year. Some groups have been very organised indeed and have already sent in a list of dates for 2025, but there’s still plenty of time for planning if you haven’t even started thinking about next year.
If you’d like to include an online meeting in your programme, perhaps over the colder, icy months so people can still enjoy support from the comfort of their own homes, we have several pre-recorded sessions which can be delivered online.
Long-standing volunteer Suzanne Hewitt has recorded an updated version of her popular Fashion, Flair and Fractures video, showing what to wear for a changing body shape. Suzanne can join your online meeting after the presentation to answer questions and give her top fashion tips.
ROS Ambassador Val Stones appeared on Great British Bake Off in 2016 and has recorded a video where she bakes three bone-friendly bakes while sharing her osteoporosis story. After the video, Val is happy to answer questions and chat about her time on Bake Off, too. If you wanted to attend a meeting with Val to see if it might work for your group, Cardiff Support Group are holding a meeting with Val at 7pm on Thursday 12 September you would be welcome to join.
Another popular session is the Nurses’ Helpline, which again comes in the form of a pre-recorded video with a chance to ask live questions to one of the Helpline nurses afterwards.
There are also a wide range of videos on our website you can show at your meetings, including exercise, our collaboration with Scottish Ballet and the Bone Matters series. You can also take advantage of the ROS College of Experts to find a clinical speaker to talk to your group. Depending on location and availability, they may be able to join you in person or online.
Please get in touch if we can help with planning for your 2025 programme, or even if you have a date you’re looking to fill in 2024.
Coffee and Connect networking meetings
We’re excited to announce new monthly online networking meetings for all volunteers. These have been set up after feedback from our support group volunteers who told us they’d like more opportunities to meet and chat with other volunteers.
These new networking sessions are open to all volunteers, whatever your volunteering role with us. The sessions will be held online using Microsoft Teams. We have included both daytime and evening sessions to enable as many of you to join us as possible.
We’ll send out email reminders nearer the time of each meeting, so there’s no need to remember all the dates now!
Booking is via Eventbrite and all the links you need are below.
If you have any problems booking a session, please let us know.
A message from Fiona Cooper, Volunteering and Public Engagement Manager
"The time has come for me to take early retirement at the start of December. I am going to enjoy being a grandma as well as ticking off lots of places on my bucket list, starting with South America and Antarctica in January; I love penguins!
"During my six years at the ROS, I have had the opportunity to meet and work with lots of amazing people, and to be involved with lots of exciting projects including getting the support groups ‘online’, the development of the CAN and LVA networks and, more recently, with Osteoporosis Connect.
"One thread that is common is the dedication and commitment of you all to make a difference to the lives of people affected by osteoporosis. I am immensely proud to have worked alongside you all and will miss every one of you. It has been a privilege to support you in your volunteering roles and I will take with me lots of lovely memories.
"I will be here for a couple of months yet and look forward to getting the opportunity to say goodbye properly."
From everyone at the ROS, we send our huge thanks to Fiona for the many years she has dedicated to supporting our volunteers. We wish her good luck in her exciting adventures and best wishes for the future. We are all very excited for her and hope she has a wonderful time travelling and making memories with her grandchildren.
World Osteoporosis Day - Sunday 20 October 2024
Kettles? On! Coffee? Ground! Whisks? At the ready!
It’s time to pour a cup of kindness and sign up to host a Better Bones Coffee Morning this October, in aid of World Osteoporosis Day. Is your support group ready to rise to the occasion?
We ‘knead’ you to sign up to host a Better Bones Coffee Morning on Friday 18 October or on a day that works best for you.
Register your coffee morning, and we’ll send you everything you need to plan your event. Your fundraising kit will be jam-packed with recipes from ROS Ambassador and Great British Bake Off star Val Stones, a guide on how to plan a ‘tea-rrific’ event, bunting cut-outs, fundraising resources, sponsorship forms and much more!
There are so many ways a coffee morning can reflect you and your support group’s style. Whether organising a big community gathering to bring people together is your thing, or you’d prefer to plan a small kitchen get-together for your group to meet over yummy cake and hot tea, we’ll be here to help support you all the way.
Whatever you plan, come together over tea, coffee, cake, biscuits, scones or hot chocolate, and be there for everybody living with osteoporosis. What will your ‘showstopper’ be? Register your coffee morning here.
Got a question? Find out more on our website here!
Prevent first fractures by checking your risk
As part of our World Osteoporosis Day activity this year, we’re also focusing on preventing those first ‘warning sign’ fractures by asking people to check their osteoporosis risk.
Our volunteers can help by promoting the online risk checker to family, friends and the local community. It takes just three minutes to complete and making changes now could save those closest to you in the future.
If you or your group are planning to do any awareness events locally, please request a copy of our risk checker QR code which can be sent to you in the post, laminated and ready to use at your community events.
By raising awareness and funds through a coffee morning or by encouraging people to check their risk this World Osteoporosis Day, you’ll be supporting our shared vision for a future of no more broken bones, no more broken lives.
Working with Gather Campaigns and the street fundraisers
Two of our Community Presenters, Stan and Janet, recently presented to a new group of street fundraisers. These fundraisers travel the country engaging people with the work of the ROS and encouraging them to set up a monthly donation.
Stan says: “I’m so proud to be one of the members who make up the Royal Osteoporosis Society Community Presenters covering the United Kingdom. We present to community groups such as Women’s Institute and U3A, workplaces such as HMRC and NHS, the Deaf Community, the Blind Society and even on Community Radio, to mention just a few. Sometimes we present online and sometimes face to face, depending upon the audience.
“Recently, Janet and I were invited to present to the street fundraisers via our fundraising partners Gather Campaigns. The presentations were at 7.30am to prepare the street fundraisers before they start work wherever they are that day. The presentations provide the teams with knowledge about osteoporosis and the work of the ROS.
“The fundraisers are a fabulous team respecting people’s decision to stop and listen to them, giving people the option to donate or just listen to them talk about osteoporosis. Lots of people are too busy to get involved. However, some people see donating to the ROS as an opportunity that they've been looking for but didn’t know how to set things up.
“So far, Janet and I have helped provide six fundraising teams in England and Wales with knowledge of osteoporosis to enable them to feel confident to share this with people on the street.
Janet adds: “I recently carried out a couple of osteoporosis awareness sessions for the telephone and street fundraisers. Attendees reported that they found the sessions interesting and that they provided helpful information, which they can use when speaking to potential donors.
“They particularly appreciated me talking about my experience of having osteoporosis as it offered an insight into the condition and brought it to life. I enjoyed hearing about the current fundraising campaign along with what a fantastic job the fundraisers do.”
Thank you to Janet and Stan for their early morning presentations to the fundraising teams, and for doing such a fantastic job. If you’d like to join our Community Presenters and help present to groups like Janet and Stan, do get in touch. The presenters are always looking for new opportunities, so if you know of a local group or organisation who’d be interested in an awareness session on osteoporosis, feel free to pass on their contact details.
Volunteers lend patient voice to new drug approval process
Lead Volunteer Advocate (LVA) Alison tells us how she came to be involved in the approval process of a new osteoporosis drug treatment:
When that 'ask’ arrives in my inbox from the Volunteering and Public Engagement team, I always hope that in some way I will be able to respond and assist. I feel that I owe the ROS so much for their support, education and the friendships I have made through involvement.
My personal story has been a positive one, but I’m so aware of those who have not been as fortunate, suffering without services and treatment. However, over the last few weeks, with the recommendation of a new drug by the National Institute for Health and Care Excellence (NICE ) - and the prospect of Wes Streeting, Health Secretary, following up on his pledge to ensure access to Fracture Liaison Services and early diagnosis and treatment for all, ending the appalling postcode lottery - I am encouraged that thousands will benefit.
It was early autumn 2023 when the email arrived requesting involvement with NICE and the appraisal of a new medication. Fellow ROS Volunteer Philippa and I qualified to be involved due to our age and experience with treatments.
The initial stages took time, and it was spring 2024 before we, as Expert Patient Witnesses, were asked to submit statements to the NICE committees considering the use of the drug.
We had copious documents to read, put forward by the drug company and stakeholders. At times we felt swamped with paperwork and IT processes. It was reassuring, however, and a privilege to take part in such a rigorous process. The support team at NICE were very helpful and guided us through procedures and our participation in the committee.
We were confident that the involvement of patients in the appraisal was valued, and our opinions respected and included in the final summary.
Thousands of postmenopausal women with very high risk of fracture now have the bone-building drug abaloparatide as an available option.
As a result of consultation, I have a greater understanding of the way in which new medications are so thoroughly tested and the significance of the patient voice.
I would certainly be prepared to be involved again. If you’re interested in being involved in similar opportunities, consider joining the Community Advocate Network (CAN). To find out more please email volunteerengagement@theros.org.uk
Relaunch of our online community - Bone Health and Osteoporosis UK
Digital Communities Coordinator Abigail Penny has joined the ROS to work on the Osteoporosis Connect project, which aims to engage with communities we aren’t currently reaching.
Osteoporosis Connect has engaged with volunteers to provide lived experience to the project, and volunteers have been involved in work looking at engaging men, people with pregnancy associated osteoporosis (PAO), those living in deprived communities and those from the South Asian community.
Abigail says: “We’re thrilled to announce the relaunch of Bone Health and Osteoporosis UK, a supportive online community dedicated to helping anyone living with, or caring for someone who has osteoporosis, fractures, or other bone health issues.
“We understand living with osteoporosis can be challenging and lonely and facing a new normal can be scary. By connecting with others who understand what it’s like to live with the condition, you can uplift and encourage each other. Our community is a safe space where you can share stories and talk about your hopes, fears, frustrations, and progress.”
The forum covers all kind of areas connected to life with osteoporosis, including exercise, nutrition, treatments, and lifestyle. It’s a place for people to ask questions and get answers from those with a similar experience, providing peer support - a bit like a support group, but for those who may not be able to access, or feel comfortable attending, a support group face to face. The community is anonymous, so people can ask questions and share their stories without identifying themselves.
The forum is hosted on the HealthUnlocked platform and moderated by HealthUnlocked and ROS staff to keep it a safe space and make sure all information shared is accurate.
We would love you to share your experiences and help support others with osteoporosis on the new forum, or just to hear your thoughts on the new look.
Please share the news about the updated forum with your support group attendees, so they can get involved as well.
To join the community and start sharing, go to Bone Health and Osteoporosis UK | HealthUnlocked
Coming soon! Our new range of Christmas cards
As well as raising vital funds, Christmas cards are a great way to spread the word about the ROS, as each card has our details on the reverse.
There’s a design for every taste, including our Bath Abbey Christmas card to reflect the home of the ROS. We also have a selection of e-cards which can be emailed directly to the recipient, making them ideal for sending last-minute festive wishes or for those further away.
Keep your eyes peeled for information on how to order from the ROS website. Plus, Christmas card order forms will be included in autumn’s issue of Osteoporosis News magazine.
If your support group would like to sell Christmas cards this year for the ROS, we’d love to hear from you. We can send the packs directly to you to be sold at your event or meeting for £3.99 each.
Once all the money has been collected, we can send you a paying-in slip which can be taken to a NatWest branch or a Post Office to pay in the money raised.
If you’re interested in selling Christmas cards for the ROS this year, please email Supporter Engagement Manager Cathy Adcock cathy.adcock@theros.org.uk or call 01761 473134.
Thank you for reading VNN.
If you’ve got a story to share or would like to see something featured, please get in touch.
