Osteoporosis News / Autumn 2022

Osteoporosis

AT

Hello

Like the rest of the country, we are mourning the loss of Her Majesty Queen Elizabeth ll, and reflecting on her extraordinary record of public service. Our thoughts are with our President, Her Majesty The Queen Consort, His Majesty The King, and the rest of The Royal Family at this sad time. Read our letter of condolence on page 6

Her Majesty The Queen Consort has championed the importance of bone health and the work of the ROS for almost 30 years. She has been passionate about raising awareness among younger people so they can take action to protect their bones.

This is the theme of our plans for World Osteoporosis Day (Thursday 20 October), which include the launch of a new osteoporosis risk checker to warn people at higher risk of osteoporosis sooner and help them make positive changes for their bone health.

This online tool will give people tailored advice about their osteoporosis risk, as well as practical tips, and will take just five minutes to complete. We can help people at higher risk have a good conversation with their GP so they can get the right care, sooner. And we’ll offer lifestyle advice to people who are at low risk so they can stay that way.

You can read more about how we’ll be supporting people to future-proof their bone health on page 5

Craig Jones  CHIEF EXECUTIVE

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AUTUMN

CONTENTS

05 Looking forward

The latest ROS news

06 Her Majesty

Queen Elizabeth II

Our letter of condolence

07 Voices of the community

Hear from ROS member, Nick Warwick

08 Tips for dressing

Making clothes work for you

09 A fruity recipe

Roast chicken with a twist

10 Help for you

Nutrition information from Dr Madhavi Vindlacheruvu

OSTEOPOROSIS NEWS Copyright of the Royal Osteoporosis Society. All rights reserved; no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means – electronic, mechanical, photocopying, recording, or otherwise – without prior permission of the publishers. The views, opinions and policies expressed in Osteoporosis News do not necessarily reflect those of the Charity. While all reasonable efforts have been made to ensure the accuracy of the contents of this publication, no responsibility can be accepted for any error, inconsistency or omission.

President: Her Majesty The Queen Consort (formerly HRH The Duchess of Cornwall). Royal Osteoporosis Society is a registered charity no. 1102712 in England and Wales, no. SC039755 in Scotland, and no. 1284 in Isle of Man. Registered as a company limited by guarantee in England and Wales no. 04995013, and foreign company no. 04995013 in Isle of Man. Registered address: St James House, The Square, Lower Bristol Road, Bath BA2 3BH

Editor:

11 Meet the consultant

We talk to Consultant Geriatrician, Inderpal Singh

12 Research

Our new research structures to help close the care gap

14 Policy and public affairs

An update about our work with the APPG on primary care

16 Get involved

Some of the different ways you’re making a difference

18 The bones of it

How to exercise safely and manage the pain and symptoms of spinal fractures

23 Understanding risk factors –hyperthyroidism

The symptoms to look out for and where to get advice and support

26 Ask the experts

Expert guidance on swallowing tablets, and how to wash comfortably and safely

28 Have your say

Your chance to share your views and experiences on living with osteoporosis

30 Take five

Meet Gareth Lloyd-Johnson, ROS Senior Policy and Public Affairs Officer

HELPLINE

Call: 0808

Email: nurses@theros.org.uk

GENERAL ENQUIRIES

Publisher:

Products

Call: 01761 471771

Email: info@theros.org.uk

Web: theros.org.uk

MAGAZINE

Email: magazine@theros.org.uk

Write: Royal Osteoporosis Society, St James House, The Square, Lower Bristol Road, Bath BA2 3BH

Looking Lookingforward

KEEP UP TO DATE

For our latest news visit theros.org.uk/news or follow us on social media: facebook.com/RoyalOsteoSoc twitter.com/royalosteosoc instagram.com/royalosteosoc linkedin.com/company/royal-osteoporosis-society

A round-up of the latest news and events

RISK CHECKER

Share our new risk checker this World Osteoporosis Day

SUPPORT GROUPS

ROS project receives Lottery funding

A

s you read in the welcome message from our CEO, Craig Jones, this year’s World Osteoporosis Day on Thursday 20 October, is set to be particularly exciting.

We’re launching our brand-new osteoporosis risk checker tool to help people understand their risk of osteoporosis and learn more about bone health. We’ll be promoting it through our first-ever national advertising campaign – both in fracture clinics and via digital channels, including social media.

The campaign will help us reach people who are at risk of breaking bones, providing

APPEAL

them with information and advice about their bone health and where to go next. It’ll also mean we can warn people who’ve already had a fracture that this could be osteoporosis and that, crucially, it’s never too late to prevent the second and subsequent fractures.

Low awareness has got in the way of progress for far too long. It’s time to change that, but we need your help.

Please spread the word and ask your family, friends, neighbours and colleagues to use the risk checker tool and help future-proof their bone health.

Find out more at theros. org.uk/check-your-bones

OUR WINTER FUNDRAISING APPEAL

Keep an eye out for our next appeal in November about the huge impact of research, and some recent studies we’ve funded through donations made by people just like you. Please donate if you can and let us know what you think about this ground-breaking work.

We’re delighted to have been awarded a grant from The National Lottery Community Fund, made possible by National Lottery players, for the project ‘Osteoporosis – Hybrid Peer to Peer Support’.

With the NHS still under pressure following the pandemic, the ROS wants to better support Volunteer Support Groups (VSGs) in Scotland to help improve the lives of people a ected by osteoporosis.

Before the pandemic in March 2020, groups in Glasgow, Aberdeen, Edinburgh and Kilmarnock met face to face to provide support and share information. During lockdown, this changed, and the ROS moved its support groups online, enabling people living with osteoporosis, and the friends, family members and carers the VSGs support, to continue benefiting from the groups.

By going online, groups became accessible for the fi rst time to those living in remote or rural locations, those with communication or mobility needs, time constraints or caring responsibilities. Unfortunately, not all groups were able to move online.

To support the remaining groups in Scotland, we want to develop a hybrid model of both face-to-face and online sessions. Our aim is for all VSGs to be online by June 2023, which could benefi t up to 46,000 people living in Scotland who break bones every year.

The National Lottery Community Fund, Scotland Chair, Kate Still, said: “National Lottery funding can make amazing things happen in local communities across the country. This project, delivered by the Royal Osteoporosis Society, is a great example of community activity in action, showing just what can be achieved when people come together for a common cause or to help others.

“National Lottery players can be proud to know that the money they raise is helping to support this vital work and to help communities thrive.”

Find out more about support in your area at theros.org.uk/ support-groups

A letter of condolence following the passing of Her Majesty Queen Elizabeth II

We are deeply saddened about the passing of Her Majesty Queen Elizabeth II, and express our heartfelt condolences to our President, Her Majesty The Queen Consort, His Majesty The King, and the rest of The Royal Family.

We have joined the many millions of people across the globe paying tribute to a much-loved and respected monarch; a figure known for her profound sense of duty and devotion to her country and the

Commonwealth. Her loss will be felt greatly, and her service remembered always.

For many years, Her Majesty The Queen Consort has been the most high-profile global advocate for people living with osteoporosis. Her Majesty is recognised across the world as one of the most effective communicators of the importance of bone health, channelling the painful experience of her own mother’s osteoporosis into helping millions of others live well.

For years, The Queen Consort has

“Her Majesty The Queen embodied the values of the charity sector more than anyone – those of duty, selflessness and devotion to the public – and she was a patron of numerous important charities. We’ll be thinking about what more we can do to learn from her powerful example, which will always be remembered.”

CRAIG JONES, ROS CHIEF EXECUTIVE

encouraged people to take action on their bones from an early age by helping tackle the unhelpful stereotypes that exist around osteoporosis. There are numerous charities, including ours, who owe a major part of their success to her patronage and commitment.

Her Majesty The Queen Consort (formerly HRH The Duchess of Cornwall) pictured with ROS Chief Executive, Craig Jones.

Photography: Ian Jones

“I now encourage my children to think about their bone health too”

How did you come to be diagnosed?

In April 2022, I was experiencing really bad stomach pains. My wife was quite concerned so she phoned 111, and was advised to go to A&E. They told me I had a kidney stone and that I should come back in the morning for a CT scan. The scan showed that my kidney stones were fine but I had a fracture in my spine. The doctor asked me when I thought this had happened, but I had no idea. At the time I thought I was being told I’d broken my back.

Within a week I was referred to a spinal clinic for an MRI scan and a blood test to rule out any other possible illnesses. I was also referred for a DXA scan through my GP. As everything seemed to be moving so quickly, I was worried there must be something seriously wrong.

The results from my DXA scan came back first – my bone density score was –2.6. My GP explained that this was low compared to healthy bone and diagnosed me with osteoporosis.

What happened next? I didn’t know what this meant, as I knew nothing about osteoporosis. I was told that there was lots of information online that I could read about the condition.

This is when I found the ROS website and contacted its free specialist nurse Helpline. The nurse I spoke to was incredibly reassuring and I was offered some great practical information on diet and exercise. If it wasn’t for the information and reassurance from the ROS, I would still be sitting on the sofa wondering what was going on.

I heard from the spinal clinic six weeks later with the results from my MRI scan, and they confirmed my spinal fracture.

What have you found helpful? I’ve since been referred to a physiotherapist. She was brilliant and

gave me some really useful advice on exercise and what I should and shouldn’t focus on.

I work for Audi UK, and do a lot of driving for my job. My physiotherapist mentioned that this is not great for me as it means I’m sitting down a lot. She gave me some practical advice on how to improve my posture when driving, and suggested walking around for 10 minutes after getting out of the car, which I do when I’m working.

I’ve also been prescribed oral alendronic acid medication and vitamin D supplements.

How has your experience affected your approach to bone health in general? Being diagnosed has made me much more conscious of my bone health. I now encourage my two children to think about their bone health too, and make positive lifestyle changes where they can, such as doing weight-bearing exercise and ensuring they have enough vitamin D. They’re also more wary of me carrying heavy objects and doing activities that could put my bones at risk of breaking.

SHARE YOUR STORY

We’d

to

We

Nick Warwick

in

about his experience of learning to live well after a spinal fracture

Nick is learning to live with osteoporosis

MAKING CLOTHES WORK FOR YOU

If you’ve had spinal fractures, you may have experienced changes to your body shape. If several bones are affected, you may experience significant height loss and a curved spine (kyphosis). This can leave less space inside your abdomen, pushing your stomach outwards. So, even though you haven’t put on weight, your waistline may get bigger.

You may notice this affects the way you feel about your body, and how you see yourself –perhaps even impacting aspects of your daily life.

Wearing comfortable and stylish clothes that fit well and feel comfortable can help to boost many people’s confidence and morale.

With the sharp rise in the cost of living, finding affordable options can feel increasingly difficult, but there are solutions.

The charity, Dressability, offers low-cost clothing adaptations and alterations to anyone living with long-term health conditions such as osteoporosis, or people with disabilities.

Here, we catch up with Dressability manager, Sharon Tombs, to learn more about the support they provide.

CREATING INDEPENDENCE

“Our highly skilled dressmakers create personalised clothing options for people. Mobility issues can make it difficult to put on or remove clothes, and our mission is to ensure people have independence and a real sense of wellbeing.

This can be as simple as helping a client who

“Good-quality items are worth keeping and Dressability can make your clothing work for you”

is struggling to do up buttons by changing fastenings to magnets and Velcro. We have a solution for most dressing concerns, including taking up a hem or adjusting a waistband.

“We’ve supported people living with osteoporosis by adjusting clothing to accommodate a curved spine and swapping small buttons and zips for more manageable fastenings. We worked with a client who was very conscious of the gap on the shoulder of her coat, as a result of her curved spine. We discretely adapted the coat, allowing her to wear it again. She felt proud again of her appearance.

“Good-quality items are worth keeping and Dressability can make your clothing work for you.”

As well as providing a more affordable option, Dressability’s focus on adapting clothing is also a climate-friendly solution.

Dressability’s services range from £5 to £15, which includes home visits in many cases.

“Demand for our service has continued to grow and we now alter and adapt over 700 garments a year. Our group of 20 volunteers makes a huge contribution to the community, delivering several projects each year.”

DOING SOMETHING WORTHWHILE

ROS member, Karen, is one of Dressability’s skilled volunteers. In 2014, Karen was diagnosed with osteoporosis after needing a hip replacement operation following a skiing accident on holiday.

“On returning home, a DXA scan showed that I had osteoporosis. It was a real shock. I had absolutely no idea that I had it and had never broken a bone before.”

Sewing is a big part of Karen’s life. After retiring, she was keen to get involved in voluntary work and joined the team at Dressability.

“I feel I’m doing something worthwhile and I’m putting my sewing skills to good use.”

As well as taking alendronic acid, Karen supports her bones by keeping active through yoga, Pilates, and walking.

“I don’t dwell on the fact that I have osteoporosis. I get on with life as it is now, rather than worrying about the future.”

INFORMATION AND SUPPORT

For more information and support, please see our daily living fact sheet on ‘Clothing, body image and osteoporosis’ at theros.org.uk/ fact-sheets

This is also available as a printed copy and can be ordered from us by calling 01761 471771.

CONTACT

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be

A dressing gown shortened at the front

Karen is part of the friendly team at Dressability

A FRUITY TWIST ON ROAST CHICKEN WITH STUFFING

If you include meat in your diet, why not try this iron-rich roast chicken recipe from registered dietitian, professional nutritionist, and California Prune Board Ambassador, Jo Travers BSc RD MBDA

CHICKEN WITH A HERBY CALIFORNIA PRUNE AND MUSHROOM STUFFING

Serves 4 Prep time 10-15 minutes Cook time 30 minutes

INGREDIENTS

500g (1.1lb) chicken thighs, skin-on 250g (9oz) mushrooms

1 onion

1 clove garlic, roughly chopped

1 handful finely chopped California Prunes

2 tbsp fresh thyme leaves, chopped (or 1 tbsp dried)

2 tbsp fresh sage leaves, chopped (or 1 tbsp dried) Salt and pepper to season

For non-meat eaters, the herby stuffing can still work as a great accompaniment to other protein sources, such as nuts or tofu, and is rich in bonefriendly nutrients, zinc and manganese.

FOR MORE INFORMATION on vitamins and minerals needed for good bone health, visit our nutrition for bones page at theros.org.uk/nutrition

On average, this recipe costs around £3.40 to make or 85 pence per person, but costs will vary depending on where you buy your ingredients.

METHOD

1. Preheat the oven to 170°C/325°F/Gas Mark 3.

2. In a food processor, chop the mushrooms, onion and garlic. Tip into a bowl with the chopped herbs and California Prunes. Season well.

3. Take a chicken thigh and, using a spoon or your fingers, gently make a space between the skin and the meat. Don’t peel the skin away completely, you

just want to create a pocket for the stuffing. 4. Gently push some of the stuffing into the pocket, covering the top of the chicken. Repeat with the rest of the chicken thighs until all the stuffing has been used.

5. Place the chicken thighs in an oven-proof dish or roasting tin and cook in the oven for 30 minutes, basting every 10 minutes or so.

6. After 30 minutes, check the juices run clear by sticking a skewer or knife into the largest thigh. If the juices aren’t clear, cook for a further five minutes before checking again.

Serving suggestion: serve with new potatoes and garden peas. For more delicious California Prune-inspired recipes, and nutritional information visit www.californiaprunes.net

Help for you

Your information and support updates

NUTRITION

Dr Madhavi Vindlacheruvu is a Consultant Orthogeriatrician at Addenbrooke’s Hospital in Cambridge, and one of our featured experts. Here, she responds to common questions about phytates and oxalates.

What are phytates and oxalates? Phytates, also known as phytic acid, and oxalates, or oxalic acid, are chemical compounds found in a wide range of plant-based foods –usually in very small amounts. They don’t harm bones directly, but can reduce the amount of calcium your body absorbs from your food. The reason for this is that they bind with any calcium you’re eating at the same time. When they reach your gut, phytates and most oxalates pass through without being absorbed into your body.

And this means that any calcium that’s bound to them also passes through the gut without being absorbed. This means there may be less calcium available to your bones.

Which foods contain phytates and oxalates? Foods containing phytates include plant-based foods such as bran, nuts, wholegrain cereals, dried beans, seeds and grains.

Oxalates can be found in plant-based foods such as tea, rhubarb and spinach. Rhubarb and spinach are particularly high in oxalates so they don’t provide much calcium for the body to absorb, even if they contain it.

WHAT’S AN ORTHOGERIATRICIAN?

An orthogeriatrician is a consultant who specialises in ensuring an older person is medically fit before they have an operation, such as the repair of a broken hip. They will consider other medical conditions you have as well as social and psychological factors. An orthogeriatrician will work with other healthcare professionals to make sure you recover and regain your previous quality of life as soon as possible.

Do phytates and oxalates prevent all calcium absorption?

No, but if a food contains lots of phytates and oxalates, it can a ect the amount of calcium absorbed. Most foods that contain phytates and oxalates only contain small amounts, so only bind to small amounts of calcium. If your diet contains plenty of calcium, you don’t need to worry or make any changes.

Should people stop eating these foods?

No, because these foods also contain important nutrients and fibre. Fibre is very important to keep your bowel healthy and prevent problems such as constipation.

Instead, try to have a diet rich in calcium, because then the e ects of any phytates and oxalates you’re eating will be very limited.

Can soaking food remove phytates and oxalates?

You may have heard that soaking food might help reduce levels of phytates and oxalates, but this isn’t proven and can reduce

‘LIVING WELL WITH FRACTURES’ WEBINAR RECORDING

Catch up on our latest Bone Matters’ webinar, where experts Professor Emma Clark, Professor Terence O’Neil, and Professor Karen Barker, give information on managing the impact of painful broken bones. Visit theros.org.uk/bone-matters to watch the webinar recording.

the levels of important nutrients. So it isn’t recommended to soak food for this reason.

Should you avoid food that is high in fibre after taking calcium supplements as it will stop the calcium being absorbed?

It’s important to remember that phytates and oxalates do not prevent the absorption of all of the calcium. If plenty of calcium is taken (as when you are taking a supplement) there will be lots of ‘free’ calcium that is not bound to these substances and is therefore available for absorption. The companies that produce these supplements tend to be very cautious when explaining that not all the supplement will be absorbed. This is true but shouldn’t make enough of a di erence to a ect you or your bones. You don’t need to avoid fibrous foods for hours around the time you take a supplement.

To watch the video and hear from experts on other topics, visit the Bone Matters’ webpage at theros.org.uk/bone-matters

In our latest Bone Matters’ Q&A video, we hear from experts on how eating and drinking the right things can support your bone health at every stage of your life

Faces of osteoporosis: meet the Consultant and National Clinical Lead

I’M A CONSULTANT GERIATRICIAN in Wales and oversee the Caerphilly Falls and Bone Health Service, a wide-reaching service that specialises in assessing people’s medical, nursing and physical or functional care needs.

We run falls and bone health clinics at the local hospital. We also run a Fracture Liaison Service (FLS) for the wider area where we identify people aged 50 and older who have had a ‘fragility fracture’.

We care for people who have broken bones or other injuries after falling over, and who may have lost their confidence as a result. We assess these people and check whether they are at risk of falling again and work with them to reduce their risk.

All of our patients also have a bone health assessment to check for osteoporosis and receive a ‘bone health care plan’. This includes lifestyle advice for good bone health, information on osteoporosis and treatment options.

SHARING LOCAL LEARNING NATIONALLY

My local team and patients have helped me to gain skills to care for people with fragility fractures. Now as a National Clinical Lead, I have been working with the Welsh Health Boards and the charity sector to ensure a standardised national approach and equal access to services – meeting the needs for the whole population in Wales.

I have introduced a national FLS development and quality assurance group to improve and support the delivery of care across Wales and reduce the chances of patients having subsequent fractures.

Our aim is to help people avoid falling over again by improving muscle strength and bone health, helping them to live full and independent lives. Our amazing

Consultant, Inderpal Singh, cares for people with fragility fractures

“My one piece of advice is that bones are living organs and are important, just like your heart and brain; remember them and make sure you exercise safely and regularly!”

team works closely with each individual and, depending on their needs, we can recommend other organisations that we think will benefit them.

We have also worked closely with the Royal Osteoporosis Society (ROS) for several years, which supports us with staff awareness and training. This has improved our communications with patients, as we now send them osteoporosis information and ROS contact details for further support.

OUR COMMUNITY-CENTRED APPROACH PREPARED US WELL FOR THE PANDEMIC

We also work very closely with the district nursing team, GP surgeries, and the community resource team to ensure there is seamless care between the hospital and the community. We felt very lucky that when COVID-19 came along, we were already prepared with good links with the community teams.

IMPROVING PEOPLE’S QUALITY OF LIFE IS SO REWARDING

I love every aspect of my job. Many of our patients arrive not knowing anything about osteoporosis but leave with a good understanding of the things they can do to take control of their bone health. By sharing information about drug treatment options and tips for a healthy lifestyle for good bone health, people often feel more confident managing their condition. It’s always a pleasure to hear people say things like, “I wasn’t expecting you could do something to improve my bone strength”, or “Thank you for helping me to go out again and see my grandchildren”, or “I’ve regained my confidence and can do my gardening again!”.

Dr Inderpal Singh is a consultant geriatrician at Aneurin Bevan University Health Board, Wales, and oversees the Caerphilly Falls and Bone Health Service. He is also a National Clinical Lead for Falls and Frailty, Wales, and is an Honorary Senior Lecturer with Cardiff University.

FIND OUT MORE

Find out more about the information and support we offer: theros.org.uk/ information-and-support

Consultant, Inderpal Singh, talks about his role in caring for older people to help them stay steady on their feet and live full and independent lives

Research Closing the care gap

INTRODUCING OUR NEW RESEARCH STRUCTURES

We’ve recently announced a series of changes to our research and educational operations to reflect the impact of the pandemic. Here, our CEO, Craig Jones, talks through these developments.

Research is a top priority for our members because we all know further breakthroughs are needed to find the osteoporosis treatments of the future. The research agenda gives us hope that things can improve. Sadly, public research into musculoskeletal (MSK) conditions is chronically under-funded. While MSK conditions account for nine percent of the impact on the NHS, they attract only three percent of public sector research funding. We’ve been lobbying hard to try to change that. Our members know this, and you’ve been incredibly generous over the years in supporting fundraising appeals for our research. Since the charity was launched in 1985, we’ve invested over £6 million in research.

A PUBLIC COMMITMENT

In 2019, we knew that more needed to be done to encourage new research breakthroughs to support people living with the condition. That’s why, when we took on our new ‘Royal’ title, we made a public commitment to the research agenda. And we turned words into action by doubling our investment in research. For example, we’ve moved from a position of running infrequent research grants rounds to having an annual round – 2023 will be our third in a row. It was this vision that led to the launch of the Osteoporosis and Bone Research Academy to create the world’s first Osteoporosis Research

FIND OUT MORE

Discover more about our current research projects at theros.org.uk/osteoporosis-research

Roadmap and cultivate a new cohort of osteoporosis leaders.

We’re proud of what our colleagues in the academy have achieved. The research roadmap identifies the key priorities in moving towards a cure for osteoporosis. We published it in 2021 and it has given a clear direction since. Alongside the roadmap, our academy experts published several internationally recognised position papers setting out the blueprint for innovative research in the coming years.

The model of patient advocacy in the academy was so successful that we adopted it across the rest of the charity, appointing over 50 Lead Volunteer Advocates to bring the same insight to other areas of work – from prevention campaigning and lobbying, to media appearances and the design of our support services. Meanwhile, the 2020–21 Aspiring Leaders programme delivered leadership training to a new group of dynamic researchers and clinicians – who I hope will be among the future leaders of the charity.

The pandemic, however, has changed things dramatically. Demand for our support services has rocketed – calls to our Helpline have risen by 50 percent since 2019. Meanwhile, fundraising has become tougher than ever. The spike in demand

reflects the emergency in the NHS, where services have been running under capacity for two years, resulting in unprecedented backlogs. Even before COVID-19, twothirds of people were missing out on the osteoporosis treatment they needed. The pandemic has widened this ‘care gap’ to eye-watering proportions.

That’s why our new strategy, Breaking the Silence, prioritises for the next four years, the research studies that can help close the care gap. This will mean we’ll concentrate our resources on helping the NHS respond to the enormous unmet need following COVID-19. This decision pauses, for the four years of this strategy, most of the causes and genetics research agenda.

I know this work is important to you, so please be assured that once we’ve helped find solutions to the challenges in the NHS, we’ll pick up that critical work where we left off.

REVISED FUNDRAISING TARGETS

This strategic decision is the reason we’ve reviewed our research operations. The second reason has been the difficult funding environment. The academy was based on a fundraising target of raising £5 million over five years, which is an ambition that has, sadly, been made impossible by the economic downturn.

Thanks to the generosity of members like you, we’ve been able to fund the academy for the full length of its three-year term. However, as the UK economy heads towards recession and charitable giving dips further, we’ve accepted the need to simplify our research operations to fit the envelope of funding available.

This has meant confronting a series of important choices. We commissioned an independent review from two senior research leaders to learn from best practice in the sector. And our trustees set up a task and finish group – made up of patient advocates, academics and clinicians – to review the evidence and make recommendations.

Each strand of the review pointed to the same conclusions. They found that the landscape has changed following the publication of the roadmap, and we now need to streamline our research operations to reflect the extraordinarily competitive funding environment. This doesn’t mean doing less research. The increased ROS spending on research, which has been taking place since 2019, will continue. But it does mean reducing the running costs of our seven clinical and academic committees, so we can maximise the

funding available to support research and innovation projects.

The new model will see the end of the Osteoporosis and Bone Research Academy in its original, research-focused form. Instead, the academy will be repurposed to become a home for our education and leadership programmes (The Osteoporosis and Bone Health Academy). This decision is faithful to the education focus in the original academy’s objectives. It reflects the importance of the ROS's role in nurturing and supporting the next generation of osteoporosis clinicians and researchers, because they’ll be the people leading the change in the NHS and society on our behalf.

A PROMISING FUTURE

We’re confident that this new model will deliver a very promising future for research and professional education at the ROS. Crucially, it allows us to continue the record level of investment we’ve made in research since 2019. By simplifying our committees, we can maximise the resources available for research and innovation grants – and that’s where the change will come from.

I’d like to thank all the members of the original Osteoporosis and Bone Research Academy. The creation of the research roadmap, recent position papers, and international recognition are major achievements, and they will continue to

Following the review, we’ll have:

• A single, new expert committee called the Clinical and Research Committee, which will reunite our clinical and academic leaders.

• A college of experts, which will bring together all our expert volunteers from different disciplines.

• A commitment to annual grants rounds for the research and innovation projects that show the best chance of closing the care gap.

• The return of the Aspiring Leaders programme to help cultivate the next generation of clinical and academic leaders.

• A new bone health digital network to bring together healthcare professionals and academics to share best practice and form new partnerships.

• A fresh focus on influencing the top research funders to prioritise osteoporosis and bone health to encourage breakthroughs.

drive our decisions on where to invest and concentrate our research. We’re looking forward to a pipeline of research bids from ROS-aligned academics that will deliver on the research roadmap, complemented by our new focus on innovation projects.

We’re confident that by working in partnership with our clinical and academic experts, we can close the care gap and provide people with osteoporosis with information and advice about their bone health and where to go next.

Our commitment to finding new research breakthroughs is only possible with your generosity. To discuss how you can personally support our research, please contact Jamie Grier at jamie.grier@theros.org.uk

“We’ll concentrate our resources on helping the NHS respond to the enormous unmet need following COVID-19”

Policy and public affairs

BUILDING UP TO THE APPG INQUIRY LAUNCH

In 2021, the All-Party Parliamentary Group (APPG) on Osteoporosis and Bone Health successfully launched its report, ‘How to end the postcode lottery for access to a quality Fracture Liaison Service’. We catch up with ROS’s Policy and Public Affairs team to find out about the work it’s been doing with the APPG this year on primary care.

In this inquiry, we wanted to look at the systems, processes and people that make up primary care. Primary care is when you first seek health advice and it can include speaking to GPs, practice nurses, pharmacists and physicians. Our aim is to better understand the systems and processes that are in place and how we can improve the experience – today and in the future – both for people with osteoporosis, and those who care for them.

What is an APPG and what do they do?

An APPG is a group of parliamentarians from different political parties who come together to work collaboratively on an issue they’re passionate about. The APPG on Osteoporosis and Bone Health works to raise awareness and campaign on osteoporosis in Parliament, and currently has 30 members. The APPG only covers England, because separate governments in Wales, Scotland and Northern Ireland hold responsibility for health and the NHS in their country. However, we also deliver similar work in Northern Ireland, Scotland and Wales via different routes.

To collect the data we needed, we used four main collection tools:

1. A survey of people with osteoporosis (which received over 500 responses)

Hearing from people living with osteoporosis is so important – especially when we’re trying to formulate a strong argument to policymakers to make the changes needed for quality care and treatment.

2. Written evidence from experts, including GPs and radiologists

3. Interviews with healthcare professionals

4. A Freedom of Information (FOI) request to Clinical Commissioning Groups (CCGs), Health Boards (HBs) and Health and Social Care Trusts (HSCTs).

An FOI request can sound quite intimidating but it’s just an appeal for information that members of the public have a right to see.

THE FINDINGS

The FOI request responses were particularly interesting. In some cases, the fact that organisations weren’t able to provide data was a finding in itself.

The lack of monitoring of these systems makes it challenging to understand the true picture of osteoporosis care. However, combined with the other data, it gives us a really good idea of where improvements can be made.

We found that:

37% of respondents did not hold data on the amount of money spent on treatment for oral bisphosphonates (alendronate, risedronate, ibandronate) and denosumab, which are all common drug treatments for osteoporosis.

52% of CCGs, HBs, and HSCTs do not hold data on the amount of money spent on DXA scans, or the number of scans carried out, for practices in their area.

97% of respondents did not have information on whether 12-month medication reviews were carried out.

We are still working with the APPG on its final report to make sure that it reflects the evidence and gives clear and practical recommendations that will help to improve patients’ experiences and the outcomes of primary care. The report is due to be launched in November in Parliament and the findings will play a part in our work with the devolved nations.

You can help us by contacting your local elected representative to let them know about the inquiry report and to encourage them to join the APPG and become a champion for us at Westminster. You can find yours at members.parliament.uk/FindYourMP

To contact your representative in Northern Ireland, Scotland or Wales, or to discuss the inquiry, please get in touch at campaigns@ theros.org.uk or call 01761 473137

Get

ALMOST £32,000 RAISED AND ALL 282 MUNROS CLIMBED

Many of you will be familiar with the name Nick Gardner, as we’ve updated you on his progress a couple of times here. Well, Nick has now completed his incredible challenge. At the age of 82, he has climbed all 282 Scottish Munros in two years to support the Royal Osteoporosis Society (ROS) and Alzheimer Scotland. To date, he has raised more than £82,000, including almost £32,000 for the ROS, beating his original targets, and ultimately helping to move us closer to beating osteoporosis.

We joined Nick on 13 August for his trek up the final Munro, Cairngorm. One thing that stood out was just how many supporters Nick had along his journey. About 150 people joined him on the final climb – from his friends and family and hill walkers from previous climbs, to brandnew followers from social media – some of whom he’d never met before. There was so much community spirit along the way. Together, we all met to celebrate and

support his wonderful achievement, and to honour his wife, Janet, who lives with dementia and osteoporosis. It was a humbling and inspirational experience, and we were thrilled to join Nick.

We caught up with him afterwards to hear about the inspiration for the challenge.

“The initial reason for taking on this challenge was for myself. When Janet had to go into a care home due to her Alzheimer’s and osteoporosis, I felt completely helpless. I knew then I had to get myself a project to concentrate on and as I’d been climbing my whole life I thought ‘right, let’s have a go at the Munros’.”

His wife Janet was diagnosed with osteoporosis in 2002, and then developed Alzheimer’s disease and vascular dementia 14 years later. She quickly became very ill, and Nick was no longer able to look after her – a devastating realisation. It was then that he turned to the “magnetic” atmosphere of the mountains, which has really helped his mental health. He realised that the more he climbed,

FIND OUT MORE

the better he felt. And that’s how it all began. Nick strongly believes that if we live a healthy lifestyle and take positive action to strengthen our bones through, for example, weight-bearing exercise such as walking, we can reduce our risk of developing osteoporosis. He also wants to show people the mental and physical benefits of outdoor exercise.

A big thank you, Nick, from all of us at the ROS for undertaking this incredible challenge and raising vital awareness and funds to help us support people living with osteoporosis.

If Nick’s story has inspired you to take on a challenge, why not join us on our Jurassic Coast trek next year? Read on to find out more about how you can get involved. To learn about other ways to support us, get in touch at supporters@theros.org.uk

To donate to Nick’s JustGiving page and help us be there for everyone living with osteoporosis, please visit justgiving.com/ team/nicks-munro-challenge

For more about Nick’s fundraising feat, read our blog on our website at theros.org.uk/nick

Nick with ROS Head of Supporter Engagement, Rachel Hughes, at the summit

WALK THE JURASSIC COAST A MAMMOTH MARATHON THANK YOU

A huge thank you and congratulations to our runners who took part in the London Marathon on Sunday 2 October.

We were delighted to be there to cheer on Team ROS as they completed the 26.2-mile course. The money raised will change lives for people affected by osteoporosis. You too, can get involved in this race of a lifetime and help us beat osteoporosis. We’re putting together our team for next year, and we’d love to count you in. Get in touch at supporters@theros.org.uk or call 01761 473287 to book your place.

As the nights draw in, why not start planning for summer? We’d love you to join us on our Jurassic Trek on 9–11 June 2023. Take in coastal views while walking to support your bone health and raising vital funds.

Supporters like you are so important. We don’t receive government funding, so every donation is crucial. And why not spread the word among your children, friends, or colleagues? To get involved, please contact the team at supporters@theros.org.uk

WHAT WILL YOUR LEGACY BE?

Thinking about your Will can be daunting. But planning this now will help you really think about what you want to be remembered for.

Legacies left to charities are called different things, such as ‘lasting gifts’ or ‘gifts in Wills’. They can be Pecuniary, (the gift of a certain amount of money), or Residuary, (the amount of money left after other costs have been settled).

We’re so grateful for every gift we’re left in a Will. We could not function as a charity without them!

They enable us to:

• run our specialist nurse helpline, allowing us to be there for everyone who needs us – when they are at their most vulnerable

• fuel pioneering research – improving diagnosis, treatment and helping us close the care gap

• campaign – to make sure we help implement lasting policy change and make a difference for the 3.5 million people affected by osteoporosis • give a voice to people living with osteoporosis. Do you need to write or update your Will? We’ve partnered with the National Free Wills Network to offer you a free Will, written by a solicitor who’s local to you. For more information, email legacy@theros.org.uk or call our Legacy Manager, Liz on 01761 473261

OUR COMMUNITY ADVOCATE NETWORK

We set up the Community Advocate Network (CAN) 18 months ago to give people the opportunity to share their lived experience of osteoporosis and help shape our services.

CAN members are involved in a number of projects – from reviewing fact sheets and providing media quotes, to sharing

involved

their experiences in focus groups, Facebook Live sessions and webinars.

A big thank you to all our members for your support. If you’d like to join this growing community and help shape our work, we’d love to hear from you. Email us at volunteerengagement@theros.org.uk

ROS VOLUNTEERS IN ACTION

Over the summer, several of our volunteers attended events, either running a stand, or giving a short talk to raise awareness about osteoporosis and bone health in the community.

In July, some of them attended The Neasden Health Fair, hosted at the Neasden Temple in London for the Festival of Inspiration.

In August, some attended an event at the Central Gurdwara Sikh Temple in Manchester.

Is there a local event you’d like to attend for us? Email us to find out more at volunteerengagement@ theros.org.uk

“We were made very welcome and talked to lots of different people about osteoporosis. We are hoping to have more awareness stands in temples and mosques in the future.”

Stan, ROS volunteer

Raising awareness of osteoporosis at the Central Gurdwara Sikh Temple, Manchester

THE BONES OF IT

In this issue’s The bones of it, we swap our scientific lens for a practical close-up on exercising safely and managing the pain and symptoms of vertebral (spinal) fractures. We hear from Matteo Ponzano, a physical activity and health promotion scientist at the University of British Columbia in Canada. Matteo’s research focuses on the prevention of falls and fractures and improving mental health and the quality of life in people at high risk of fracture or physical disabilities.

The bones of it

Do you have a topic or question you’d like us to explore? Email us magazine@ theros.org.uk

Matteo Ponzano of the University of British Columbia in Canada led an important research project that included experts from many different countries. They reviewed all the evidence and agreed on the best way to treat people who have pain and other symptoms after spinal fractures. They produced recommendations for healthcare professionals so they could improve their practice. Earlier this year in the UK, the ROS launched new ‘Guidance for the management of symptomatic vertebral fragility fractures’, of which Matteo is a co-author. Many of the research findings were discussed and included this guidance. While written for healthcare professionals to improve the care they provide, all the recommendations in the UK guidance are reflected in the ROS’s resources for people with fractures. Here, Matteo shares suggestions from the research on moving and exercising safely with spinal fractures.

GETTING MOVING AGAIN, SAFELY

We know that people living with osteoporosis and spinal fractures are at higher risk of sustaining more ‘fragility fractures’. These can occur in events that would not otherwise fracture a healthy bone (e.g., from a fall of standing height or less, picking up objects from the ground, twisting to reach sideways). Unfortunately, we don’t know exactly which movements can cause a fracture and in fact, most people are not likely to sustain one while exercising. However, those with osteoporosis, or who have already had a fracture, are often afraid of sustaining another, which can have a

significant impact on their confidence, activities and hobbies.

While this concern is understandable, should it mean that people avoid certain activities, for example picking up a child or grandchild or gardening? The good news is that it doesn’t have to!

Here are some of my tips to help you carry out your favourite activities and sports, safely.

1. Work with a healthcare or exercise professional

After you’re diagnosed with osteoporosis or have sustained a fracture, your healthcare professional (most likely your GP, physiotherapist, or consultant) will recommend that you exercise. This will help improve your physical functioning and may help prevent falls.

You are unlikely to be referred to a physiotherapist in the UK. In fact, most people with osteoporosis don’t need specific advice unless they have disabling fractures or other medical conditions that affect their mobility. If you have experienced a spinal fracture that causes pain or changes to your height or posture, a referral to a physiotherapist for guidance can be very useful.

If you feel that you need some advice about building up your exercise level, you can seek advice from an exercise trainer. Discuss any concerns you have about safe movement, building up gradually and caring for your back during exercise. If you have had spinal fractures or other fractures that are still causing symptoms, then a physiotherapist would be most appropriate.

These registered professionals have a degree in physiotherapy and perform manual therapy. They can prescribe therapeutic exercises to help

improve spine and joint problems after injuries and surgeries.

2. Move safely

You may have been told not to bend, twist, or carry shopping bags, for example. However, with guidance  and tips on moving safely, these activities are still possible. If you do  get to see a physiotherapist, or exercise professional, they will be able to provide personalised information on how to perform a range of activities. See the box below for some tips for day-to-day living that you can try.

HOW TO MOVE SAFELY

BENDING FORWARDS – bend at the hips, knees, and ankles (hip hinge) and keep your back straight. You need to feel that it’s your legs that are doing all the work!

TWISTING – step to turn, so that your body, knees and toes face the same direction. That way you will not have to twist your torso.

HOLDING OBJECTS – hold items close to your body.

CARRYING SHOPPING BAGS –split and distribute the weight in your bags evenly across both hands.

USE SLOW AND CONTROLLED MOVEMENTS rather than sudden movements.

Visit the exercise section of the webpage at theros.org.uk/factsheets to read the fact sheet on ‘Bending forward with osteoporosis’.

3. Exercise

People with osteoporosis are encouraged to do balance exercises and muscle strengthening that gradually builds in intensity, at least twice a week. Weightbearing exercise with some impact is also important.

Some experts recommend that exercises for your back, and to improve your mobility and balance, can be introduced four weeks after a fracture occurred, depending on your pain levels. Others would say that you should gradually introduce gentle exercises as soon as you feel able.

Approximately 12 weeks after the fracture, or as the pain gets better, strength and functional training exercises can be included. In the box on the right are some example exercises you can try. If you prefer another activity – such as lifting, yoga, golf, or Pilates – you can still pursue this, as long as it can be performed safely (i.e., following the advice in the box on the left).

4. Pain management

Pain medication can be used to relieve the discomfort caused by fractures. Visit theros.org.uk/pain-medications for more information.

Exercise can also help to manage pain. If possible, it’s best to limit bed rest to the

first few days after a fracture. Regular, daily activities should be resumed as soon as you are able, and heavier physical efforts or lifting should be introduced gradually, as pain allows.

Adopting the safe movement techniques listed in the box on the left will also help to reduce pain. Sitting with a straight posture and avoiding prolonged sitting, by getting up every 30 minutes, are other helpful tips.

Spending 15–20 minutes a day in the ‘unloading position’ is another effective strategy. This involves lying on your back with your feet flat on the floor and your knees bent. Lay your arms out to the sides with your palms facing upwards. If the pain persists after several months, then seek advice. Talk to your doctor about accessing further help. A referral to a pain clinic or a pain management service might be right for you.

5. Nutrition

Eating a healthy, balanced diet helps support your bone health at every  stage of life. By including different food groups, you should get all the nutrients you need, including calcium  and vitamin D. Discuss with your doctor  if you notice you’re losing weight or having problems with appetite or swallowing. You may benefit from a referral to a dietician.

EXERCISE

START WITH THE FOLLOWING:

1 Lying down on your back, legs extended and arms out to your sides, palms up. Gently press your shoulders against the ground.

Hold this position for 10 seconds, then rest for 30 seconds. Repeat three times.

2 Lying down on your back, legs extended and arms out to the side with palms facing up, gently press your head against the ground.

Hold this position for 10 seconds, then rest for 30 seconds. Repeat three times.

3 Stand on one leg, close to the kitchen counter or another unmovable surface.

Hold this position for 10 seconds. Repeat three times.

AS THE PAIN IMPROVES, YOU CAN START TO ADD THE FOLLOWING:

4 Sit-to-stand (progress to half a squat and then to a full squat).

Perform the exercise 10 times, then rest for 30–45 seconds. Repeat three times.

5 Step up or climbing steps.

Perform 10 steps with each leg, then rest for 30–45 seconds. Repeat three times. The number of steps may vary based on the height of the step.

6 Push up, starting against the wall, progressing to over the counter and then on the floor.

Perform the exercise 10 times, then rest for 30–45 seconds. Repeat three times.

TO FIND OUT MORE , visit the nutrition for bones page on our website at theros.org.uk/nutrition or call 01761 471771 to order a printed copy of our ‘ Better bone health’ booklet.

Understanding the risk factors for osteoporosis is very important as it allows us to identify any positive changes we can make for the health of our bones. For those already diagnosed with osteoporosis, being aware of potential underlying causes can provide the best chance of improving bone strength.

The thyroid gland can be found in the neck, in front of the windpipe (trachea). The thyroid’s main function is to produce a hormone known as thyroxine. Hyperthyroidism, which is often called an overactive thyroid, is a condition

HYPOTHYROIDISM

Hypothyroidism, often called an underactive thyroid, is a condition where not enough of the hormone thyroxine is released by the thyroid. This can cause symptoms including tiredness, dry skin, poor concentration, weight gain and feeling the cold, as well as depression and muscle aches. It can occur as a consequence of previous thyroid surgery or radioactive iodine treatment for hyperthyroidism or thyroid cancer. Children born with the condition, and adults who develop it, need

UNDERSTANDING RISK FACTORS: HYPERTHYROIDISM

In this regular feature, we explore some of the risk factors associated with osteoporosis and broken bones. This issue, we look at the thyroid disorder, hyperthyroidism.

where too much of the hormone thyroxine is released by the thyroid.

Here, we answer some of the key questions you might have about hyperthyroidism and its link with osteoporosis.

What are the main symptoms?

Thyroxine regulates the rate of the body’s metabolism, which is the process of turning food into energy. This hormone is also necessary for normal mental and physical development and for the maintenance of good health generally.

In hyperthyroidism, increased levels of thyroxine can cause symptoms including weight loss, anxiety, irritability, palpitations, loose bowels, tiredness, weak muscles and increased sweating. In some people with hyperthyroidism a swelling of the thyroid, known as a goitre, may develop in the throat.

What is the link between hyperthyroidism and osteoporosis?

lifelong treatment with thyroid hormone replacement (levothyroxine).

Hypothyroidism itself is not a risk factor for osteoporosis. However, the treatment for hypothyroidism, thyroxine replacement therapy, can lead to bone loss. To prevent this, thyroid hormone levels must be carefully monitored. This seems to be particularly important for older people, as research suggests an increased risk of hip fracture in those over 70 who take too high a dose of levothyroxine.

Excess levels of thyroxine increase the rate of bone turnover – the continuous cycle of bone being broken down and replaced by cells known as osteoclasts and osteoblasts. This turnover cycle normally takes around 200 days, but in hyperthyroidism, the process happens too quickly. As a result, the bonebuilding cells (osteoblasts) are not able to replace bone fast enough and the rate of bone loss increases.

If thyroid hormone levels stay too high for too long, there is an increased risk of developing low bone density and osteoporosis, particularly in postmenopausal women, where there is a potentially increased risk of hip fracture.

Hyperthyroidism can also be associated with muscle weakness, which can be quite severe in some cases. This can then lead to an increased risk of falling and subsequent broken bones.

How do I get diagnosed and treated?

Hyperthyroidism is diagnosed following a clinical assessment by a doctor and some simple blood tests, known as thyroid function tests. If diagnosed, you’re likely to be referred to a specialist for treatment. There are three main treatment options for hyperthyroidism. These include drug treatments that stop the thyroid from producing too much thyroxine hormone; radioactive iodine treatment, which helps to reduce thyroid activity; and finally surgery to remove part or all of the thyroid.

Do I need to have a bone density scan?

Hyperthyroidism is one of several conditions that can cause a reduction in the levels of bone density. Once thyroid hormone levels are reduced to normal, the rate of bone loss will no longer be so rapid and your bone strength may start to improve. Your doctor will assess your need for a bone density scan based on your osteoporosis risk factors and refer you for one if it’s thought necessary.

I’ve previously had hyperthyroidism. What can I do to prevent osteoporosis and fractures?

Factors that can help to maintain healthy

JULIE’S STORY

Julie, 53, shares her experience of hyperthyroidism and osteoporosis, diagnosed at age 31 and 36, respectively.

“I was unaware that I had hyperthyroidism until I discovered a growth on my neck, which after surgery turned out to be a noncancerous tumour. Tests during treatment also showed a higher-than-normal heart rate. I experienced some weight loss and changes in body temperature too. Blood tests confirmed the diagnosis.”

After the growth was removed, Julie’s thyroid levels returned to normal. Five years later, she was diagnosed with osteoporosis after fracturing a rib while coughing.

“I didn’t know the hyperthyroidism was a risk factor for developing osteoporosis

Hyperthyroidism

bones include a well-balanced diet with adequate calcium-rich foods; sufficient vitamin D; regular weight-bearing exercise; avoiding smoking and keeping alcohol intake within the recommended limits.

In the UK, it’s hard to get enough vitamin D in the autumn and winter months – especially from the end of September until the end of March – and all adults are advised to consider taking 10 micrograms every day as a supplement. Some people are advised to take a supplement throughout the year to be certain they are getting enough. Speak to your pharmacist, dietitian, or GP for individual advice.

until now in my fifties. I feel this should have been discussed, particularly as I had a family history as both my maternal grandmother and mother developed osteoporosis after menopause.

“I’ve been prescribed several drug treatments for osteoporosis over the years, including strontium ranelate and zoledronic acid. I also take calcium and vitamin D to make sure I’m getting enough. I am active, and my job involves a lot of walking.”

WORDS OF ENCOURAGEMENT

“Neither condition has to stop you from living an active, full life if you get treatment. I am careful but refuse to let it ruin my life or scare me.”

INFORMATION AND SUPPORT

For more information on thyroid disease and osteoporosis, please see our fact sheet at theros.org.uk/causes. This is also available as a printed copy and can be ordered from us by calling 01761 471771

The British Thyroid Foundation (BTF)

The BTF (registered charity number 1006391) is a patient organisation providing evidence-based information and support to help people in the UK live better with thyroid disease. Visit its website at btf-thyroid.org

“Given that hyperthyroidism is a risk factor for osteoporosis, it is fantastic to be working with the Royal Osteoporosis Society to raise awareness of this.

“Together we can help people to recognise symptoms of hyperthyroidism and understand why controlling this condition is so important for our health, including reducing the risk of osteoporosis.”

JULIA PRIESTLEY, CEO OF DEVELOPMENT, BRITISH THYROID FOUNDATION

Ask the experts

Your questions answered

Is there anything that helps with swallowing tablets?

QI’ve been finding it difficult to swallow my weekly bisphosphonate tablet of alendronate (alendronic acid, Fosamax). It’s causing me to panic about it. Can I chew the pill or have it with food to help it go down?

ASwallowing certain pills can sometimes be difficult, especially if you’re concerned about getting the pill stuck on the way down. Added to that, if your concern becomes more of a panic, it may cause your throat to narrow before swallowing, which can make the whole process even harder.

Many medications are fine to be taken with food, such as breakfast or a piece of bread. However, for alendronate and the other bisphosphonate tablets, this isn’t possible as they need an empty stomach for their best absorption.

To get the best from the tablets and to lower the risk of unwanted effects, it’s important to follow the specific instructions you are given about taking them. This ensures the tablets don’t get stuck and

cause any irritation to your food pipe (oesophagus). Tablets such as alendronate aren’t suitable for chewing as they might irritate the mouth or oesophagus.

If you have difficulty swallowing tablets, here are two good techniques you can try.

Scan the QR codes (below and right) with your smart phone or tablet device (that connect to the internet) to be taken directly to videos explaining the techniques.

SCANNING THE QR CODE

1. Open your smart phone or tablet’s camera and point it at the QR code.

2. You will see yellow lines appear around the code and a notification pop up with a link.

3. Click on the link and you’ll be taken directly to the video to watch on YouTube.

1) The lean forward technique

• Put the tablet on your tongue.

• Take a medium sip of water.

• Lean or bend your head forward as you swallow so you are tilting your chin towards your chest.

Scan

Scan

for

2) The bottle method

• Put the tablet on your tongue.

• Close your lips tightly around a smallnecked flexible plastic bottle filled with water.

•

Tilt your head back slightly to take a drink from the bottle, keeping contact between the bottle and your lips by pursing your lips and using a sucking motion. Swallow the water and the pill right away.

• Don’t let air get into the bottle as you swallow. You should feel the bottle squeeze in on itself.

Do

✔

Take your tablet as instructed with water.

✔ Lean forwards slightly when you swallow (for technique one only).

✔ Practise swallowing with very small sweets or bits of bread. Try bigger pieces of bread as swallowing gets easier.

Don’t

✘ Throw the tablet towards the back of your throat.

✘

Tip your head back too much when you swallow – this can make swallowing more difficult.

✘ Crush pills, open capsules or alter your medicine without getting advice from your pharmacist nurse or doctor, as this could stop the medicine working properly.

Your doctor or pharmacist can advise about drinkable versions of this medication, called Alendronic Acid Oral Solution and the dissolvable tablet called Binosto. These drinks may be useful for people who have difficulty with taking tablets.

Injectable treatments are possible too. You can read about the different drug treatments at theros.org.uk/treatment

Ask the experts

How can I wash comfortably and safely? Q

I have had several spinal fractures over the past 20 years and although these have healed, and the pain is much better, my shape has changed considerably. How can I wash myself comfortably and safely?

ALooking after your personal hygiene often involves movements and activities that may have become more of a struggle since you had a fracture. Bending down and standing for longer than you find comfortable may now be more difficult.

Climbing in and out of a bath or standing safely in a shower may feel out of the question, but this is not necessarily the case. You may feel more confident having someone else at home while you bathe or shower, to offer help should you need it.

There are also many bathroom aids and adaptations that can be used to allow you to bathe or shower independently, safely and comfortably. To help choose the right one for you, you may want to arrange a care needs assessment via your local authority social services team to discuss any difficulty moving around the home.

While only certain people may be eligible to have things paid for by the local authority, an occupational therapist (OT), who assesses the need for any aids or adaptations, will still advise on useful aids and where these can be found locally. Items available include walk-in baths with door access, baths with an integral hoist, and fully fitted bath lifts or hoists to manually lift you in and out of an existing bath.

Simple measures such as grab rails, non-slip mats and tap grips (to help you turn the taps on and off more easily) are also available. Bath boards can be a simple but effective choice for many. These fit across the width of the bath and provide a place to sit so you can swivel yourself around and lift your legs over the edge of the bath before lowering yourself into the water.

Bath and shower chairs are also very useful, as these come in different heights allowing you to sit while showering, or sit in the bath water, but not quite as low as the bottom of the bath. It is important to check the size and type of bath you have to make sure any aids fit and that your bath (if plastic) is strong enough.

There are a variety of long-handled sponges and brushes you can buy to help you reach further without needing to twist

or bend. These come in different shapes and sizes with curved, straight, or flexible handles, and cost from just a few pounds. You can also have a full body dryer, which fits onto your bathroom wall, to dry you after a bath or shower.

It’s important to take good care of your skin and make sure you can wash and dry areas that are difficult to reach. A change in posture caused by spinal fractures can sometimes cause you to get sore skin in areas that may rub or are now in skin folds. Dribbling can also sometimes be a problem if your head is very low down due to a severe spinal curvature, which can again make your skin sore. Your doctor or pharmacist can advise you about useful moisturising or barrier creams that can help you keep your skin healthy and reduce soreness.

Hair washing can also prove challenging, but there are several products and tips that can help. Washing your hair while showering avoids the need to lean over the sink or bath but if you do prefer this method, hair washing trays, which fit over the sink can reduce the discomfort in your neck. Dry and no-rinse shampoo caps can be useful as these are simply massaged into your hair without the need for water and rinsing.

Having the right equipment and aids can make all the difference and help you to live as independently as possible. For more information on making life easier after spinal fractures, please see our factsheets ‘Daily living after fractures’ and ‘Out and about after fractures’. These can be downloaded from our website at theros.org.uk/fact-sheets or ordered as printed copies by calling 01761 471771

“Having the right equipment and aids can make all the difference and help you to live as independently as possible”

Have your say

Your views and opinions

WRITE TO US: The Editor, Osteoporosis News

,

Royal Osteoporosis Society, St James House

The Square, Lower Bristol Road, Bath

BA2 3BH or email magazine@theros.org.uk

Deadline for spring issue: Friday 3 February 2023. Please note that your letter may be edited and published.

For a personal reply to a question, write to our Helpline at the address above, call 0808 800 0035 or email nurses@theros.org.uk

A MOTHER AND DAUGHTER’S EXPERIENCE OF OSTEOPOROSIS

Sheilaand her daughter Jenny, from Cheshire, share their experiences of learning to live well with osteoporosis.

JENNY

Jenny, 37, was diagnosed with idiopathic juvenile osteoporosis (IJO) as a child. Idiopathic juvenile osteoporosis is a form of osteoporosis that occurs in children from the ages of seven to the early teens. It’s an extremely rare form of osteoporosis that affects less than 100 children in the UK.

“Having been diagnosed with osteoporosis at such an early age, we learnt to adapt as a family and coped with the fractures Mum and I both experienced. We still managed to go on amazing holidays when we were growing up. School was hard and I did miss an awful lot due to treatment, but I finished my A-Levels and I’ve got a diploma in dental nursing.”

LEARNING TO LIVE WELL

Jenny continues: “I’ve learnt to deal with osteoporosis in my daily life. Fortunately, the last time I fractured a bone was about 15 years ago. I still get aches and pains on a daily basis from old fractures, but I’ve learnt to manage the pain.

“My job as a dental nurse keeps me very active every day, and I enjoy going for walks and playing with my three nephews who keep us all on our toes. I live with my partner of five years, and we make the most of every day and enjoy holidays and spending time as a family.

“My brother saw first-hand how osteoporosis affected me. This year, he ran the London Marathon for the third time in honour of the ROS – to help raise money for this amazing cause. When I was diagnosed, the ROS helped us all as a family to understand the condition. The support was invaluable.”

SHEILA

Sheila, 62, also experienced fractures as a child. Following Jenny’s diagnosis, DXA scans showed she had lower than average bone density (osteopenia), which in her case, then moved into the osteoporosis range after a few years.

Sheila has broken several bones over the years, but fortunately not since 2015. After retiring in 2021 following a long career in the NHS working in a busy Accident and Emergency department, Sheila continues to keep active to support her bones.

“I belong to a gym and enjoy swimming, and I get my weight-bearing exercise running around after my three grandchildren!”

WORDS OF ENCOURAGEMENT

“If you’re struggling with something today, it helps me to think ‘I might be able to do it tomorrow’ and try to have a positive

SHARE YOUR STORY

mental attitude. We have to make the most of the times we’re well as we don’t know what’s round the corner.

“Keeping a sense of humour with life’s challenges is so important as you just don’t know what is ahead. My main aim now is to keep active, keep my weight down, and try to keep as mobile as possible – and try to keep all my teeth!”

Do you have an experience you’d like to share? We’d love to hear from you.

Email us at magazine@theros.org.uk

Jenny, and her mum Shelia (below)

your say

DEAR TRANSPORT MINISTER…

Muriel, from Glasgow, contacted us about the speed bumps installed in her road, and the difficulties she’s experienced as a result.

“For 30 years my osteoporosis remained stable with an occasional slight improvement at one part or another. Bisphosphonates were truly a miracle.

“Sadly, our local council decided to install what they refer to as ‘speed cushions’ in my road. Many of us begged them to reconsider. I pleaded my case about the problems which could be caused for people with bone problems – others mentioned pregnancy, post operative patients, etc. The council was adamant that no problems had ever been reported and they were safe. They can cause damage to cars so surely bones must also be at risk?

“Their installation means I have to drive over six bumps if I go left and seven to go right. Not long after they were installed, and despite going like a snail over each bump, my spine began to bother me. After six months, when gingerly driving over a bump/cushion there was a violent crack and intense

pain in my spine, and it had indeed been fractured.

“Obviously, no proof could be offered as to the cause, although my consultant, like me, is certain the bumps had been a contributary factor. I have been left with a number of difficulties and problems, most of which have been controlled, but am still very angry at my treatment.

“Now that many more MPs are becoming involved in discussions about osteoporosis, I feel it would be very helpful if transport ministers, in particular, could be asked to consider the many forms of disability which can be adversely affected by bumps.”

Thank you, Muriel, for writing in and sharing your story, although we’re very sorry to read about the challenges you’ve faced.

Lucinda Roberts, ROS Head of Policy and Public Affairs says:

“Sadly, Muriel’s story is all too common – but her MP can help to raise issues like this at the highest levels of Government. We’re working with Muriel to write to her MP asking him to contact the transport minister responsible.”

FINANCIAL SUPPORT: SUBMIT YOUR QUESTION

Later this year, we’re running a Bone Matters’ online Q&A session on financial support with the charity Turn2us. One of their advisors will be answering common questions about the financial help you may be entitled to receive as someone affected by osteoporosis. To submit your question for Turn2us, please email magazine@theros.org.uk by 30 October

BUCKWHEAT PANCAKES

Liz, from East Devon, sent us one of her go-to recipes. Using buckwheat flour, these pancakes are naturally gluten free.

RECIPE

Makes 3 crêpe-sized pancakes

Equipment Large jug Pancake pan

Spatula

Ingredients

3 heaped dessert spoons of buckwheat flour

1 large egg

Pinch of salt

250ml almond milk

Butter, to lightly grease the pancake pan

FILLINGS

Add banana or maple syrup (my favourite) for a sweet pancake, or make it savoury by adding cheese, mushrooms, or another filling of your choice.

METHOD

1. Make the mixture in the large jug (which can then be used for pouring the batter into the pancake pan)

2. Break the egg into the flour and mix until it has a sticky texture

3. Slowly add in the almond milk until you have a mixture like pouring cream. Be sure to get rid of any lumps!

4. Set aside for 20 minutes

5. Heat the pancake pan and grease with butter

6. When the pan is ‘smoking’, pour a third of the mixture in and let it run across the whole pan

7. When the pancake is set and browning, turn it briefly. Do not overcook.

To serve – add a filling of your choice, and fold.

Speed bumps can cause problems for those with osteoporosis

Take five

“As the son of an orthopaedic nurse, I feel like I’m in the right place!”

Affairs

What is your role with the ROS?

I’m part of the team at the ROS that helps influence parliamentarians and policymakers across England, Scotland, Wales and Northern Ireland to make osteoporosis treatment a top priority for all four UK health systems. Using our existing research, case studies and knowledge shared by partner organisations, we build our case for reform in the NHS, social care and beyond – and then present it to those in charge.

For a Member of Parliament (MP), Member of the Scottish Parliament (MSP), Member of the Senedd (MS), or Member of the Legislative Assembly (MLA), this may be discussing whether they have a Fracture Liaison Service (FLS) in their constituency. With a member of the House of Lords, it may be discussing the impact of hip fractures on the NHS budget. Each conversation is different, but they all take us a step closer to achieving our goals.

Tell us a little bit about your background

I started my career working for MPs and have worked for six in different roles as a campaign organiser, caseworker, and parliamentary assistant. I decided I wanted to put those skills to good use, so I moved into the charity sector, firstly at an organisation advocating for older vegetarians and vegans, and now at the ROS. Health has always been a policy area that has interested me and, as the son of an orthopaedic nurse, I feel like I’m in the right place!

What role does policy play in osteoporosis care and how does the work you do make a difference to people with osteoporosis? We’re up against other conditions for recognition

Gareth helps to influence policymakers

and prominence in the health service and healthcare planning. A lot of what we want to achieve requires funding, so we have to make that case to the people who control the budgets. There are several misconceptions around osteoporosis and tackling them is so important. In the day-to-day, raising awareness and knowledge around osteoporosis improves the conversations that patients have with healthcare professionals, and supports clinical best practice.

Some of our members will have seen the petition you worked on earlier this year to end the postcode lottery for access to Fracture Liaison Services (FLSs). Can you tell us a little bit about the petition and how it will make a difference? What’s next?

The petition was a way of proving to policymakers that the postcode lottery for access to quality FLSs is an issue that has widespread support, and one that people

are passionate about. It also helps us to understand our supporters and what’s important to them, which helps us make the case for FLSs. The campaign isn’t over. We now have this fantastic piece of evidence to support us in the fight for equal access to care and treatment. This only strengthens the argument we can make to policymakers and politicians – public opinion carries a lot of weight.

What would you like people to know? Is there a way they can make a difference? Writing to your elected representative makes a difference. To help you, we’ve put together a template letter. To get a copy, please email me at gareth.lloyd-johnson@theros.org.uk

Remember, even if access to FLSs is good in your area, we are campaigning for them to be universally available, and every MP, MSP, MS, or MLA can play a part in that.

This November, the All-Party Parliamentary Group will release its inquiry report into osteoporosis and primary care. I’d recommend people read it to see our proposals and what we’ll be campaigning for. In 2023, we’ll also be introducing new ways people can get involved in our campaigns, so do look out for those.

FIND OUT MORE

Visit theros.org.uk/campaign to find out how you can get involved