Welcome to November's Volunteer Network News

We hope you've escaped the worst of the wet and windy weather that seems to have been around recently.

In this November edition of VNN we’re excited to share with you photos and updates from volunteers celebrating World Osteoporosis Day. We also have an update on the Better Bones campaign and are looking ahead to Christmas with our new Christmas cards and carol concert.

Please do keep sharing your photos and what’s been happening with us. We love seeing what you’ve all been up to and including them in VNN for your fellow volunteers to see. If you have a story you’d like to share or something you’d like to see in VNN, please get in touch. This is your volunteer newsletter and we’re keen to include the volunteer voice and share your news.

Best wishes

Helen, Fiona, and Lorna

VPE Team

Update on our Better Bones campaign with the Sunday Express

Our Better Bones campaign has now been running for 21 weeks and we’re making serious progress in raising public awareness and pushing osteoporosis and fracture prevention to the top of the public health agenda. 

Since the campaign launched, we’ve built a coalition around bone health securing endorsements from 250 Parliamentarians, seven Royal Medical Colleges representing over 200,000 doctors, the CBI (Confederation of British Industry), Federation of Small Businesses, TUC (Trades Union Congress), and 43 charities and campaigning organisations, including Mumsnet.

We’re calling on the Government to mandate and fund Fracture Liaison Services (FLS) in every area, so we can end the postcode lottery that is denying 90,000 people access to much-needed treatments. If we succeed, we can prevent 74,000 life-changing fractures over the next five years and free up 750,000 hospital bed days.

Our amazing volunteers have played a large role in supporting the campaign. Here are just some of the ways in which they've helped...

New 'Shedding Light' video

Several volunteers have featured in the Sunday Express over the summer months sharing their own experiences of living with osteoporosis, and not being diagnosed promptly or having access to an FLS.

Some of these stories were also used to produce a short film, which was shared with some of the top decision makers on World Osteoporosis Day as well as being driven around Westminster on an ad van to make an impact. Watch the video ‘Shedding light on an invisible crisis’ here.

Getting your voices heard at Party Conferences

At the beginning of October, six volunteers attended the Conservative Party Conference in Manchester and six volunteers went along to the Labour Party Conference in Liverpool.

All 12 were proudly wearing bright pink sweatshirts, each with a personal quote on the back telling their osteoporosis story. We had an amazing time attending fringe events, making connections and asking questions of those in power. It was great to be able to attend the conferences along with so many other politicians, organisations and decision makers.

The volunteers (and their pink sweatshirts) were noticed wherever they went, and we raised the profile of osteoporosis and, more importantly, got the politicians to take notice of the problem.

Since returning from the Conferences, we've had a significant moment in Parliament, when Andrew Gwyne, Shadow Minister for Social Care suggested opposition approval for the Better Bones campaign.

Irene Baker, who came along to the Labour Party Conference says: “I felt that it was a real privilege to go to the Conference on behalf of the ROS. It was great to be working as part of a team and feeling that we were getting our message across and making a difference.”

Salisbury Support Group

Volunteers and attendees from the Salisbury Support Group lent their support to the Better Bones campaign during October lobbying their local MP for Salisbury John Glen, the Chief Secretary to the Treasury. The group added their names and personal testimonies to a joint letter to John Glenn, detailing their diagnosis delays, how a lack of FLS has affected them, and the difference an FLS would have made.

On World Osteoporosis Day, Elizabeth and Jan from the Salisbury Support Group and Craig Jones, our CEO, were able to meet with John Glenn MP in his constituency office. They presented him with the joint letter from their support group and discussed the campaign and our aims with him.

Senior politicians like John Glenn are difficult to meet with, and we couldn’t have done it without the support of local volunteers, so we'd like to say a massive thank you to you all for your enthusiasm and commitment.

How to get involved

If you’d like to support the Better Bones campaign, you can write to your MP or other elected official to ask them to raise this in Parliament. See how your area is doing on providing vital fracture prevention services now.

Christmas is coming!

Our brand new range of Christmas cards is now available. As well as raising important funds, the cards are a great way to spread the word about the ROS, as each one has our details on the reverse. 

There’s a design for every taste including our St Paul’s Christmas card to celebrate our Christmas carol concert. 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 to those who live far away. Click here to see the full range.

If your support group would like to sell Christmas cards this year for the ROS then we’d love to hear from you. We can send the packs of cards directly to you and these can then be sold at your event or meeting for £3.95 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 our Supporter Engagement Manager Emily Brown on emily.brown@theros.org.uk or call 01761 473299.

Join us at St Paul’s Cathedral

Tickets are still available for our joint carol concert at St Paul’s Cathedral on Tuesday 19 December, with diabetes charity JDRF. It’s shaping up to be a fantastic event, and one we’re really looking forward to.

We’d love to see as many volunteer faces as possible, so please do let us know if you’re planning to come along. That way, we may be able to organise a volunteer get together directly before or after the event for all those attending, so we can have a chat and a festive mince pie!

If you’re having a group meeting in the weeks leading up to Christmas, it would be great if you could let your attendees know about the concert and see if they’d like to come along, either with their families or as part of a group outing.

We’re announcing more special guests in the run up to the concert, but those confirmed so far include readings from Dr Amir Khan, Nick Knowles and Derrick “Mr Motivator” Evans, and musical performances from Sheku Kanneh-Mason and classical duo Classical Reflection.

Book tickets and read more about the event here.

Can you be part of the CAN?

The Community Advocate Network (CAN) was established in 2021 to ensure that osteoporosis care, support and research reflects the needs and realities of those with lived experience of osteoporosis.

Our CAN members share their experience of living with the condition to help shape research, media stories, publications and even government legislation. This could be as someone directly affected by the condition or a family member, care-giver or friend. We want the network to be as broad and diverse as possible, including people from all backgrounds and areas to reflect the experiences of those affected by osteoporosis all over the UK.

There is no set time commitment and you can choose which requests you volunteer for.

The network currently has nearly 100 members but we're always looking to add new members to our group, and are particularly interested in hearing from men and those from an ethnic minority. If you or someone you know might be interested in supporting us with this important work or would like to find out more, please get in touch at volunteerengagement@theros.org.uk

Host your own ROS awareness stand

Hosting an awareness stand is a great way to raise awareness of osteoporosis in your local community, and help promote the work of the ROS. The stands are also a good chance to connect with people in the area, and promote your support group to potential new attendees.

We can provide you with a banner, tablecloth and help you source leaflets and posters to display on the day. Please drop us a line if you’d like to get involved. Take a look at some of the recent stands below...

Raising awareness at Airedale Shopping Centre

Community Presenter and CAN member Christine hosted an awareness stand as part of a Falls Prevention event at a local shopping centre. Christine says: ”A great day at the Airedale Shopping Centre for Falls Prevention. Good contacts with people passing through.” Thank you, Christine!

Borders CAMEO group

Ann from our newly formed Scotland Online and Borders CAMEO groups held an awareness stand at Tesco to mark World Osteoporosis Day.

She says: "On 19 October, I set up my stand at the large Tesco store based in Galashiels for the day between 10am and 4pm. It was a wet and breezy day, and with much enthusiasm I came armed with plenty of ROS information leaflets to give out to folk, with practical information and support to help guide them to take action for their bone health.

"The day went well and plenty of people visited the store. Lots of folk came over to speak to me, asking lots of questions which was great. I gave out lots of leaflets over the course of the day, as well as guiding people to the ROS website for further information and support.

"Later in the afternoon a reporter visited me at the stand, and I explained to her all about the work of the ROS and how important it is to raise awareness about the condition itself.

"I went on to tell her how I am forming a CAMEO support group in the community for people living with osteoporosis in Galashiels and the Borders area."

The Borders CAMEO is a new group that hopes to meet in Galashiels up to four times a year. Our Scotland Online group meets online and gives the chance to connect with people across Scotland for information sharing updates and support.

Belfast Volunteer Team

The Belfast Volunteer Team have been getting out and about raising awareness at local events, most recently for World Osteoporosis Day. Vi from the Volunteer Team says: “We had an information stand at Aurora Leisure Centre in Bangor to mark WOD. We were kept busy giving out leaflets and talking to the public about the condition and support available from the Royal Osteoporosis Society.

“It was both surprising and interesting to see a number of men looking for information. Some women felt that their GPs offered very little support following diagnosis. So, there’s plenty of work for us to do in promoting the ROS and the support groups in the community.”

FLS team joins stand at Southampton General Hospital

After meeting with John Glenn MP in Salisbury, Jan headed south to Southampton to host an awareness stand with members of the Fracture Liaison team at the hospital. They helped people complete the ROS risk checker and spoke more about osteoporosis and the support available.

Nottingham Support Group's annual Medical Update meeting

Nottingham Support Group held their annual Medical Update on 6 September. Lindsey, the group chair has shared a report of the evening:

“Our Nottingham support group was delighted to, once again, hold our annual Medical Update. This year our theme was ‘Am I receiving the right treatment for my osteoporosis?’

"Our Chair and Co-Chair were Professor Opinder Sahota and Sister Rebecca Barbary. Professor Masud presented on romosozumab; Associate Professor Bishop spoke about research into medication adherence; Dr Lunt advised about emerging drugs to treat Sarcopenia (muscle loss); and Ms Dickenson advised on the role of the community pharmacist currently and going forward.

"We’re pleased to say that this year's attendance has increased on last year and people were excited to attend again."

Looking ahead to 2024

If you've been planning support group meetings or events for 2024, please do remember to let us know what you’ve got happening so we can add the details to our website and help support you when the time comes.

For those organising, if you’re looking for speakers for your 2024 programme, the VPE team can support you in your search for healthcare professionals to speak at your events. Please contact us to discuss and we can put this forward to our college of experts and try to match you with a suitable speaker. It's helpful if you can accommodate a speaker online or for a hybrid meeting, as this means location and travel isn’t a barrier, and opens up more possibilities.

We also have a range of other online meeting ideas, including the Dance for your Bones and other exercise videos, and the ever-popular talks by our specialist nurses and Suzanne Hewitt’s Fashion, Flair and Fractures.

If you haven’t already tried an online or hybrid meeting, and would be interested in a trial, we can support you with this. Please get in touch to find out more.

Stan has the final word 

Stan, chairman of the Manchester Central Support Group and also one of our Community Presenters, was invited to an FLS event in Manchester on 13 October.

The event had been organised by Professor David Sands Johnson and had many speakers including Professor Tim Cootes, Professor Terry O'Neill, James Bluett, Dr Sunil Nedungayil, Steven Rowntree (ROS), Warren Heppolette, Ali Doyle and Stan himself.

Stan was invited to make a closing summary at the end of the 5-hour session and he chose to focus on the patient perception of osteoporosis.

Everyone at the ROS would like to thank our longstanding volunteer Stan for speaking at the event, and all our volunteers who have completed speaking engagements on behalf of ROS this year.

A round-up of volunteer activity

Merthyr Support Group meeting.

Wirral Support Group coffee and chat.

Norfolk and Suffolk held an afternoon tea to celebrate World Osteoporosis Day.

Hastings CAMEO had a visit from the hydrotherapy team in September, and tried out some exercises.

Southampton Support Group encouraged everyone to wear orange to mark World Osteoporosis Day, and tried out some ribbon waving as part of an exercise demonstration.

Alison wore her pink conference sweatshirt in a French hospital for WOD.

Christine wore her Better Bones campaign sweatshirt at an awareness event for a GP patient group.

Thank you for reading VNN.

If you’ve got a story to share or would like to see something featured, please get in touch.

volunteerengagement@theros.org.uk