85,000 people with osteoporosis in England are missing out on the drug treatments they need  

New figures released by the Royal Osteoporosis Society (ROS) show the scale of the ‘postcode lottery’ facing osteoporosis patients across the country, with many not getting the expert care they need.

The key to timely diagnosis and treatment of osteoporosis is a Fracture Liaison Service (FLS) – the British-born success story that has become the world standard. An FLS systematically identifies, assesses and treats anyone who sustains a fracture after age 50.

Yet ironically, FLS coverage in the UK is weak, and today’s new figures reveal the full extent of the postcode lottery.

The audit, conducted via a Freedom of Information survey, sent to 123 Trusts in May, shows that only 63/123 Trusts (51%) in England were able to confirm they have an FLS. In comparison, coverage is 100% in Scotland and Northern Ireland. 

Even more worryingly, the findings show widespread under-performance in existing FLSs. Most Trusts fall consistently short of the national standards, which involve identifying and seeing at least 80% of patients in a timely way, and then following up at agreed intervals to ensure, amongst other things, that patients are supported to stay on treatment – which needs to be taken for five or more years to work.

• Only 19/123 Trusts confirmed that in 2019 they were able to identify 80%+ of their patients aged 50 years and over with a recent diagnosed fracture, and in 2020 performance declined further to just 14/123 NHS Trusts.
• Only 30/123 Trusts confirmed they see 80%+ of the patients referred to their FLS within the recommended 12-week period.
• Follow-up was also found to be poor, with only 9/123 Trusts confirming they review 80%+ of patients on osteoporosis treatment 16 weeks from fracture.
• Only 10/123 Trusts confirmed they followed up 80%+ of patients on drug treatment 52 weeks on from fracture.

The audit was launched on behalf of the All-Party Parliamentary Group (APPG) on Osteoporosis and Bone Health, which is conducting an Inquiry into healthcare inequalities facing patients.

The gaps exposed by these figures are in line with national audit data by the FLS Database, which suggests that at least 85,000 people every year are missing out on the anti-osteoporosis therapy they need. Moreover, backlogs caused by the COVID-19 pandemic are worsening delays and missed opportunities still further, with new ROS figures showing that 79% of bone-scanning services are operating at severely reduced capacity – causing daunting waits as bones deteriorate further.

The fragmented patchwork of hospital services, worst in England, means that treatable problems are routinely left to escalate, with a fifth of women suffering three or more broken bones (fractures) before getting a diagnosis. A ‘tell-tale’ spinal fracture - severe and painful in itself - is a powerful predictor of the hip fracture, which does more than any other to create long-term disability and loss of independence. Yet two-thirds of spinal fractures remain undiagnosed – meaning 2.2m people are slipping through the net. A quarter of those who go on to suffer a hip fracture die within a year of the injury.

The impact on people’s lives is shown by the ROS’s new patient experience data, also released today. The findings show that 38% of the 3000+ respondents had to wait over a year after their first broken bone to get diagnosed; 28% more than two years; 17% more than five years. Almost a third, 29%, of osteoporosis patients prompted their own health assessment, suggesting that thousands of less empowered patients are being left behind.

The lack of monitoring and follow-up, especially during the pandemic, has led to thousands of patients coming off their medication, putting them at risk of increasingly debilitating fractures. The ROS’s new patient experience data shows a 10pt drop in confidence amongst patients, since 2014, that they are taking the right medication (just 48%, down from 58% in 2014), with only 40% of respondents feeling confident that their medication is effective.

Only 53% of respondents say the benefits and drawbacks of their medication were properly explained to them by healthcare professionals. Worryingly, less than a third (32%) of patients felt they were getting the level of monitoring and review they need, a steep decline of 15pts since the last survey in 2014.

The Royal Osteoporosis Society is calling on Health Secretary, Sajid Javid, to use the Government’s spending review to invest in a FLS in every Trust, ensuring cover for all over 50-year-olds in the UK.

Craig Jones, Chief Executive of the Royal Osteoporosis Society, said:

“Every hour in modern Britain, people will suffer 60 broken bones due to osteoporosis – affecting mainly older people, who have already suffered so much during this pandemic. The disease has a devastating personal, societal and financial impact. It doesn’t need to be like this: levelling up services in the NHS can spare tens of thousands of people the long-term pain, disability and loss of independence caused by fractures, protecting quality of life as people live longer, and paying back the NHS’s investment many times over”.

Jan Westbury, 65, from Fordingbridge in Hampshire, said:

“In 2012 I fractured both my arms when I fell backwards. The healthcare professionals who cared for me did not mention that I could have low bone density and there was no mention of a Fracture Liaison Service.

“A few days later my GP saw the x-ray reports and thought it looked like I’d had fragility fractures and so arranged a DEXA scan. The results found that I had osteopenia in both my hips – meaning my bone density was lower than the average adult, but not low enough to be diagnosed as osteoporosis.

“Since then I’ve sustained a neck injury which took me two years to recover from and also had sudden severe onset of sciatica that was a challenge for 18 months. At each point my osteopenia has been dismissed as a cause.

“I believed I was due to have my next scheduled DEXA scan in 2020, and thought this was delayed due to COVID-19, but I have recently discovered that in my area the scans are no longer routinely repeated, and instead have to be requested. My GP agreed another scan should be arranged and I now have an appointment.

“The post code lottery for a Fracture Liaison Service means that I and many others miss out on access to proper co-ordinated care and expert advice.”

Find out more about the APPG Inquiry.