The power of the patient voice – shaping policy and influencing change

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. The findings highlight major shortcomings in osteoporosis identification, treatment, and care. Experts and Parliamentarians are now calling for a targeted national screening programme alongside several other proposals, for osteoporosis to give fracture prevention the priority it needs.

Other proposals include establishing a new National Specialty Advisor for fracture prevention and osteoporosis within the NHS, broadening the range of professionals who manage patients at high risk of fracture, and defining osteoporosis as a long-term condition across all Government health guidance.

The patient voice has played a big part in the inquiry thanks to the input of ROS volunteers sharing their lived experiences of osteoporosis and services. 

Lead Volunteer Advocate (LVA), Irene, from Sheffield, was diagnosed with osteoporosis in 2020 following vertebral (spinal) fractures. Struggling to find support locally, Irene turned to the ROS Helpline and website to fill the gap. She applied to be an LVA a year later as a way of giving back and to help improve access to services which meet the needs of those affected by osteoporosis.

We catch up with Irene to learn about her role in the APPG inquiry and the political support she’s helped to secure as a result.

How did you support the APPG inquiry in your role as an LVA?

The experiences of patients and the evidence collected by the APPG very much reflected my own experiences. I wanted to bring the inquiry to a wider political audience as politicians can support investment into osteoporosis services.

Your local MP, or other elected official, can help raise the profile of osteoporosis and hold the government to account on local or national issues in several ways. Politicians can ask oral or written Parliamentary Questions (PQs) on particular areas of concern to which the relevant Minister must respond. They may also intervene on debates, write to government or shadow Health teams, or join the APPG on Osteoporosis and Bone Health.

I wrote an email to Olivia Blake MP, my local MP, inviting her to attend the inquiry launch in Parliament. In it, I outlined the scale of the problem, including the number of people affected, the scale of under-diagnosis, and the cost of fractures on the NHS. I highlighted how the APPG report will show that if we tackle under-diagnosis of osteoporosis in primary care, we can give people access to preventative therapies which are safe, effective and highly affordable, improving the quality of life for many. I also shared my own story I’d fractured my arm several years earlier and at the time it wasn’t investigated further, and I was disappointed by the lack of informed support I was able to access locally. I was delighted when she agreed to attend.

What were your highlights from the inquiry launch in Parliament?

My highlights were meeting members of the APPG, other ROS volunteers, clinicians, and Olivia Blake MP, who showed a great interest in my experiences and the report. As one of the clinicians in attendance was from my local bone health clinic, I was able to introduce her to Olivia so she could also see the professional perspective. I think the patient and professional perspectives combined sent a strong message about gaps in our local services, and in particular a lack of a FLS in our area.

What are the next steps?

I also had an interesting conversation with Lord Black of Brentwood, one of the APPG co- chairs of the APPG about the processes of the APPG and how it will continue to collect evidence and highlight the current situation in the care and treatment of osteoporosis.

At the inquiry launch, Olivia Blake MP expressed her interest in joining the APPG, so hope to meet her again in due course, along with the ROS Public and Policy Affairs team, to discuss the next steps.

Locally, I set up the Sheffield Volunteer Team with Kay Moore, another ROS volunteer, whose evidence to the APPG is included in the final report. We are arranging to meet the new clinical lead of Bone Health in Sheffield to see how we might mutually support each other. Their professional expertise could inform our group, and in return, we could add a patient voice to support them, for example in the provision of a local FLS. As Olivia has already been briefed about our need for an FLS, I hope that she will be able to offer political support to help achieve this.

To find out more about support in your area, visit our ‘Find your local support group’ page. If there’s not a group in your area and you’re interested in setting one up, please get in touch - volunteerengagement@theros.org.uk  

What changes in osteoporosis treatment and care would you like to see come about as a result of the APPG’s work?

When I first read the APPG inquiry report, I was struck by how closely the evidence collected matched with my own experiences of late diagnosis, lack of specialist support and a lack of knowledge and confidence in primary care.

As a result of the work of the APPG I would like to see an increase in awareness of osteoporosis as a serious long-term condition. Early identification of those at risk through a national screening programme would mean that treatment could be offered before major and potentially life-changing fractures occur.

I would also like to see better training for practitioners in primary care, particularly GPs who are often best placed to identify those at risk. Many of us are referred back to GPs for treatment and review but find they sadly lack the knowledge they need to support us. As the report shows, many of us feel abandoned once we are diagnosed with little or no discussion about our treatment or needs with follow-up limited to another DXA in five years’ time. I really hope that the report highlights these issues to those that make decisions about funding and training, so that osteoporosis is given parity with other long-term conditions and those of us living with osteoporosis receive better care and are able to have a better quality of life.

Find out more

Read the full APPG report or find out more about the APPG Inquiry