Search
Login
Welcome to February's Volunteer Network News
Welcome to the first VNN of 2023.
It may still be winter but there are definite signs of spring starting to appear and we look forward to some warmer weather and vitamin D around the corner. It’s been a busy and exciting start to the year as we welcomed a very special guest in January to officially open our central Bath office. Read on below to find out more, plus some of your highlights and key dates for your diaries.
As always, please do get in touch with your news and any feedback on future topics for VNN. We love to hear from you.
Helen, Susan, and Fiona, VPE team.
Her Majesty The Queen Consort officially opened our new office
On Wednesday 25 January, we were honoured to welcome Her Majesty The Queen Consort to our new office in central Bath to mark its official opening. It was fantastic that our volunteers were able to play such a key role in this special day.
Her Majesty has a long-standing relationship with the ROS following her late mother’s and late grandmother’s devastating experiences of osteoporosis.
During her visit, Her Majesty heard the early results of our risk checker, which she helped launch on World Osteoporosis Day (20 October) last year. By sharing the risk checker with your friends, family members, neighbours and colleagues, you’ve helped over 50,000 people check their bone health! A huge thank you from us in the VPE team and the ROS for your support in raising vital awareness of osteoporosis.
During her visit, Her Majesty met with some of our specialist nurses on the Helpline, which now answers 13,000 enquiries a year - demand is now 45% higher than in 2019 before the pandemic.
Her Majesty then attended an event at the Guildhall, Bath’s most prestigious civic building, to celebrate our move into the city. Bath has a proud medical history, with the thermal spa having been influential in the development of rheumatology as a distinct clinical specialty.
LVA, Annette, spoke about her experience of osteoporosis at the Guildhall event.
Annette said:
It was such a pleasure to meet Her Majesty today and I hope her involvement helps more people to understand osteoporosis and take simple steps to strengthen their bones earlier in life. This can make such a difference to people’s quality of life later on.
You can read the full story on our ‘Latest news’ page.
Coming up
Volunteers' Week
While June may feel a while away, we wanted to give you an early reminder about Volunteers’ Week 2023, taking place 1-7 June. We will be hosting a series of online events each day of the week to celebrate all of the wonderful activities you are involved in across the UK and to say a big thank you.
We’ll be including full details on how you can get involved in May’s issue of VNN.
New osteoporosis awareness raising programme
Our online community presenters have been busy recently, developing a new awareness-raising presentation. We will promote this shorter presentation to organisations and businesses as a ‘lunch and learn’ style event.
We are currently piloting the session with a selection of health charities and aim to share it more widely in the spring.
If you know of any businesses who might like to know more about osteoporosis and bone health, please get in touch.
The impact of your support
Our amazing pool of 85 Community Advocate Network (CAN) members and 18 Lead Volunteer Advocates (LVAs) were busy throughout 2022, responding to 61 requests for support, which is more than once a week.
Whether you gave evidence for the APPG inquiry into primary care, shared your story for Osteoporosis News or the media, or spread the word about our risk checker, you’ve raised vital awareness of osteoporosis and bone health and advocated on behalf of people living with the condition.
A huge thank you from us in the VPE team and the ROS.
We’re recruiting for new members to join the CAN. If you’d like to join our advocates and share your lived experiences to help others living with osteoporosis, please email us and we can share more details about the role.
Bone Matters
The latest session on HRT and the menopause is now available to watch on the Bone Matters’ page. Menopause nurse specialist, Kathy Abernathy, answers a selection of questions about taking HRT for bone health and the menopause. This bonus session follows on from January’s episode on HRT as an osteoporosis drug treatment.
Coming up later in February, Dr Stephen Tuck discusses osteoporosis in men, and we hear some real-life experiences of osteoporosis and fractures.
If you’re still planning your support group programme meetings across this year, you may want to tie into the Bone Matters’ themed online sessions, inviting a local speaker or holding a peer support session as a follow up.
You can also use the Bone Matters’ topics as discussion topics for your Come and Meet Each Other (CAMEO) meetings. These are our informal get-togethers, arranged alongside our more formal support groups. CAMEO meetings are a great way to connect with other people living with osteoporosis.
- March - Hip fracture recovery
- April - Exercise and osteoporosis
- May - Understanding family history and osteoporosis
- June - The emotional impact of osteoporosis
Please note, these timings and topics are subject to some changes, but we’ll continue to update you through VNN.
Please do continue to promote the UK-wide online Bone Matters’ series to your digitally able attendees.
Campaigning: what’s next after the launch of the APPG for Osteoporosis and Bone Health's inquiry?
On 30 November 2022, several ROS Lead Volunteer Advocates (LVAs), along with trustees and staff, joined Parliamentarians in Westminster to launch a report based on the findings of the All-Party Parliamentary Group (APPG) for Osteoporosis and Bone Health’s inquiry into primary care.
We continue to raise awareness among policy-makers and politicians of the recommendations in the two APPG inquiry reports, the first of which looked into the postcode lottery for Fracture Liaison Services (FLS).
Areas we are focusing on include:
- Campaigning for excellent quality and universal provision of FLS across the UK
Understanding the current provision of DXA (bone density) scanning through a recently launched Freedom of Information (FOI) request to all hospital trusts in the UK - Making the case for targeted national screening programme for osteoporosis to give fracture prevention the priority it needs
We'll be sharing further updates in May’s VNN, including ways you can get involved, with information tailored to the different UK nations.
ROS volunteers appointed to NICE osteoporosis committee
At the end of 2022, we were approached by NICE (the National Institute for Clinical Excellence) who were looking for lay members and a clinical member to join their osteoporosis committee. We are delighted that Irene Baker, one of our Lead Volunteer Advocates has been appointed as a lay Member and Karen Knapp, one of our healthcare professional volunteers has been appointed as the clinical member.
The committee is updating the current guidelines on risk assessment, treatment and prevention of fragility fractures.
Irene said:
It is important that the experiences and views of all of us living with osteoporosis are taken into account. As a post-menopausal woman, I feel that traditionally we have been underrepresented. After just one meeting, working alongside health professionals and other experts in the field, I have learnt a huge amount about the way NICE collects the research that will be used to formulate the guidelines.
All members of the committee have an equal voice. Although the guidelines are primarily for clinicians, they need to be accessible to everyone.
By combining professional and patient expertise we hope that the new guidelines will improve current practice, enabling earlier diagnosis and the most appropriate treatment to help prevent more fractures. Additionally, we also hope to improve the patient experience.
The support group online meeting programme is now live!
We know that since the pandemic, more people are looking to speak to others living with osteoporosis but may not have an active support group in their community. However, a good number of support group meetings are continuing online, meaning you can be based anywhere in the country and still join in!
We now have a new online meeting page on the website which you can promote in your communities, at your next support group meeting or in your next newsletter to help us spread awareness.
Pease remind your contacts that they do not need to be based in that area to attend, although some of the topics and content may have a local or regional focus. Most online events are free of charge, and you can attend from the comfort of your living room.
If your group is holding an online event in the near future, please let us know, so it’s featured on the new page.
The Patients Association – patient survey now open
The Patients Association conducted three surveys during the worst of the COVID-19 pandemic to understand patients’ and carers’ experiences of health services. The results provided valuable insights into not just patients’ experiences, but also their fears for their health in the future.
The Patients Association have committed to continuing to run surveys to track the patient experience. The goal is to build a longitudinal database that will allow them to see trends over time.
The survey is open to any adult living in the UK and is available now. It closes on 20 February 2023.
You can complete the survey at surveymonkey.co.uk/r/theros
Thank you for reading VNN.
If you’ve got a story to share or would like to see something featured, please get in touch.
