Arthritis & You

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ARTHRITIS & YOU

Q3 / 2020

Full campaign on www.healthawareness.co.uk

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“Pain from musculoskeletal conditions like back pain affects millions of people in the UK” Sue Brown Chief Executive, Arthritis and Musculoskeletal Alliance

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“We are doing what we can to support the process of resuming surgery as quickly, efficiently and safely as possible” Bob Handley President, The British Orthopaedic Association

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“The coronavirus lockdown has highlighted, more than ever, the need for people living with arthritis to keep active and healthy” Martin Lau Registered Dietitian and Arthritis Action’s Services Development Manager

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IN THIS ISSUE

04 What can you do while waiting for joint replacement surgery Bob Handley President, The British Orthopaedic Association

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Why pain is important Pain from musculoskeletal conditions like back pain affects millions of people in the UK. It can be life changing. What can be done?

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By keeping to a healthy diet, we can hugely lessen the load felt by our joints Martin Lau Registered Dietitian and Arthritis Action’s Services Development Manager

WRITTEN BY

Sue Brown Chief Executive, Arthritis and Musculoskeletal Alliance

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The COVID-19 pandemic caused immense concern, worry and anxiety for the 400,000 UK adults living with RA Clare Jacklin Chief Executive, NRAS Project Manager: Scott Bellis scott.bellis@ mediaplanet.com Business Development Manager: Josie Mason Content and Production Manager: Kate Jarvis Managing Director: Alex Williams Head of Business Development: Ellie McGregor Digital Manager: Jenny Hyndman Designer: Thomas Kent Content and Social Editor: Harvey O’Donnell Paid Media Strategist: Ella Wiseman Mediaplanet contact information: Phone: +44 (0) 203 642 0737 E-mail: uk.info@mediaplanet.com All images supplied

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If you are waiting for treatment, ask what you should be doing to make the wait more bearable and to make sure you are in good health when you do get your treatment.

here is a vast range of musculoskeletal conditions (like back pain and arthritis) and one thing they have in common is pain. People with these conditions often say that it is the pain, rather than the condition itself, which has the biggest impact. To live a full and active life it is essential to address this and help people find ways to manage their pain.

People with pain need support During lockdown, many people lost a lot of the support and treatment they relied on. Operations were cancelled; physiotherapy services would see only urgent and emergency cases; osteopaths, chiropractors, Pilates and yoga classes shut; swimming pools and gyms closed.

We are now beginning to open up health services again. In allocating who is prioritised for treatment, it is important that we don’t downplay the impact of pain. The difficult reality is that it will take a long time for services to catch up. Meanwhile, people waiting in pain need support and to know what they should be doing while they wait.

They need empathy for how devastating it is to be told you must live with this for months longer. Communication is key – no one should be waiting in pain without knowing what is happening and how long they may have to wait.

In allocating who is prioritised for treatment, it is important that we don’t downplay the impact of pain.

What can help pain?

If you are experiencing pain from a musculoskeletal condition, csp.org.uk/ mskadvice has all kinds of resources, organised according to the body part that hurts.

Don’t stop doing things – that will make the pain worse in the long run.

If you can, stay in work. Reach out to others – talking to people in the same position is a really effective way to get support. Many ARMA member organisations1 have resources, groups and services that can help and there will be one that support people with your condition.

If you are waiting for treatment, ask what you should be doing to make the wait more bearable and to make sure you are in good health when you do get your treatment. It won’t be easy, but it will be worth it because your treatment is likely to be more effective.

Whether you are a person in pain, healthcare professional, employer, friend or relative, we can all do something to help.

References 1. http://arma.uk.net/membership/

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Why speed is of the essence for inflammatory arthritis diagnosis A painful form of inflammatory arthritis, called axial SpA (AS), can take years to diagnose.

Speedier diagnosis is urgently needed to help patients with the disease.

I INTERVIEW WITH:

Dr Dale Webb CEO, NASS

WRITTEN BY

Tony Greenway

Paid for by NASS

magine you began to develop severe back pain around the time of the 2012 London Olympics — but today it’s getting worse and no-one can tell you what’s wrong. Unbearable?

Thousands of people who are waiting to be diagnosed with axial SpA (AS) are in exactly this situation.

Axial SpA (AS) or axial spondyloarthritis, to give the condition its full name, is a painful and progressive form of inflammatory arthritis, affects around 1 In 200 adults in the UK and, shockingly, takes an average of 8.5 years to diagnose.

“To understand this condition, it’s important to stress what axial SpA (AS) is not,” notes Dr Dale Webb, CEO of NASS, a charity dedicated to transforming axial SpA (AS) care in the UK. “It’s not osteoarthritis, caused by wear and tear; and it’s also not mechanical back pain, caused by sports injuries or heavy lifting.”

Rather, axial SpA (AS) is a chronic inflammation of the joints caused by an overactive immune system which

disproportionately affects young people: the average onset is just 24 and symptoms often start in mid to late teens. These can include pain, stiffness, fatigue and night sweats. It’s also linked to inflammation of the eye which, unless treated quickly, can lead to blindness.

And with 59% of people with axial SpA (AS) reporting mental health problems, it can have a significant impact on people’s ability to socialise, establish careers and even start families.

Quicker diagnosis to minimise disease progression There’s currently no cure for axial SpA (AS), but early diagnosis would allow treatment to slow its progression, reduce levels of pain, stiffness and fatigue, and enable people to live well with the condition sooner. So why the delay? “Often, people don’t see their GP when symptoms first occur and, when they do, it’s sometimes assumed that it’s mechanical back pain,” says Dr Webb. “Patients may therefore be

If you have back pain that started before the age of 45, comes on slowly over time and is better when you’re exercising, then you could have axial SpA (AS) – so ask your GP for a referral to rheumatology.

passed around the healthcare system to non-rheumatologists. Our message is: if you have back pain that started before the age of 45, comes on slowly over time and is better when you’re exercising, then you could have axial SpA (AS) – so ask your GP for a referral to rheumatology.”

To ensure that every patient is diagnosed within one year of symptoms first appearing, NASS is proposing the world’s first Gold Standard for the diagnosis of axial SpA (AS). With more awareness and understanding of axial SpA (AS) from patients and GPs, and with health commissioners developing more robust referral pathways, Dr Webb believes this target is achievable. “It is ambitious,” he concedes. “But if we’re going to reduce diagnosis times, the support of the whole NHS and Healthcare community is vital.”

The Gold Standard Time to Diagnosis programme is funded by UCB which has no editorial control over the content or output of the programme.

To find out more visit: nass.co.uk/an-olympic-wait-for-diagnosis/

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What can you do while waiting for joint replacement surgery If you are waiting for joint replacement surgery, there is a lot of support available to you on how you can stay as fit and as well as possible during this time.

WRITTEN BY

Bob Handley President, British Orthopaedic Association

D

ue to the COVID-19 pandemic and the stress it put onto the NHS, many planned surgeries for arthritic conditions such as hip and knee replacements were put on hold. Over the summer, some elective surgery has restarted at reduced capacity with an intention to increase this as quickly as resources and safety allow. This resumption of work will occur at different rates around the country depending on local rates of COVID-19 and the nature of the hospital facilities available.

This has been a very difficult time for everyone. Patients and NHS staff wanted to be safe while playing their part in society. The return to these scheduled, elective surgeries is much welcomed. With these in place, patients are able to have the vital operations they need to reduce their pain and restore their mobility and livelihoods.

Increased waiting lists The shut down in elective surgery earlier in the year – due to COVID-19 – has contributed significantly to the growing waiting lists that are affecting all elective surgery. We have heard from many people who are on waiting lists in very difficult situations and many are understandably concerned and frustrated. We know that there are now hundreds of thousands of people on orthopaedic waiting lists across the UK.

We are doing what we can to support the process of resuming surgery as quickly, efficiently and safely as possible. There are regular discussions between surgeons around the country to seek the best ways to safely treat and support our patients. In the meantime, we’re also doing what we can, in collaboration with other partners, to support those people who are waiting for surgery.

Support is available If you are waiting for surgery there is a lot of support available to you to advise what you can be doing to stay as fit and as well as you can during this time. This will help you get the best outcome from your surgery when the time comes. Here are some of the best examples: • The Joint School app provides information, exercises and tools for people who have had hip or knee replacements postponed. Keeping moving is an important way to stay healthy as you approach your surgery. www.jointschool.app/ • GoodBoost provides evidence-based physical therapy sessions for the reduction of pain and improved mobility. Sessions can be as little as 10 minutes long and are personalised based on your preferences and home environment. www.goodboost.org/land

• Centre for Perioperative Care have some useful FAQs for patients having an operation during the COVID-19 (coronavirus) pandemic, to help you know what might be different and how to prepare: https://cpoc.org.uk/ sites/cpoc/files/documents/2020-05/ CPOC-FAQ.pdf • We also encourage you to look after your mental wellbeing. The charity, Mind, has many resources on this, including some specific to COVID, such as: https://www.mind.org.uk/ information-support/coronavirus/ coronavirus-and-your-wellbeing/ • We also have a dedicated patient area of our website with FAQs relating to COVID that we are regularly updating with the latest information to help support and inform you. www.boa.ac.uk/patients If you know of anyone who is awaiting surgery, we would really appreciate it if you could please share this information with them to help us reach as many people as possible.

Ultimately, we know that everyone who is on the waiting list is there for an important reason and needs their surgery, so we are working with national bodies and charities for musculoskeletal disease to ensure that orthopaedic patients get the care they need as quickly as is possible.

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Rheumatoid arthritis: going beyond what has been done before

Paid for by Gilead Sciences Ltd

For hundreds of thousands of people across the UK, rheumatoid arthritis remains a debilitating condition. More needs to be done and better understanding is a vital part of this.

A INTERVIEW WITH: Hilary Hutton-Squire General Manager UK & Ireland, Gilead Written by: Amanda Barrell

ffecting over 400,000 people across the UK, rheumatoid arthritis (RA) is a chronic, auto immune condition that can cause swelling, stiffness, chronic pain and fatigue. These are often life-changing symptoms that result in people having to give up work, limit social arrangements and frequently impact on mental wellbeing.

Hilary Hutton-Squire, General Manager UK & Ireland at the pharmaceutical company, Gilead Sciences, describes the symptoms as often “invisible”, and says that “despite decades of progress in treating this disease, many still live with frequent and painful symptoms. This condition is far from where we want it to be and much more still needs to be done.”

“RA is far from just joint damage.

This is a condition that can affect many different aspects of a person’s physical and mental wellbeing, yet so often people think of it as just creaking joints caused by old age – and that couldn’t be further from the reality.”

“When the patient support community and companies, like Gilead, come together to raise awareness, the results can be really powerful. Some of the findings about what people with RA face are truly shocking. These stories need to be heard – it is these kinds of experiences that show why understanding and progress are so important.”

As part of Gilead’s work in this area, it has launched a new campaign, ‘We R.A. Priority’.

Organised by Gilead Sciences, with support from the National Rheumatoid Arthritis Society (NRAS), it provides a platform for people to share experiences – highlighting, if RA is made a priority, that the results can be lifechanging.

“Our aim with this campaign is to show the real face of RA and be a positive force in helping shape positive change for all those affected.”

Innovation in rheumatoid arthritis is still a priority While progress has been made, there is still a long way to go in RA. “There is no single solution; but there is space for new ideas and new ways of thinking about how we solve the challenges people with RA face today. This applies to everything, not just medicines. We need to think about what we can do as a society as well.”

And important research is happening. Recently, Gilead entered into a 10-year partnership with fellow pharma company, Galapagos.

“This is a really exciting partnership that unites Gilead’s heritage in shaping lifechanging progress in serious diseases with a Galapagos R&D programme, which has enormous potential.”

Partnering with the community to empower positive change While scientific research is vital, there is also a realisation that it needs to go hand in hand with improved understanding of RA.

UK-INF-2020-09-0056 Date of preparation: September 2020

Did you know that children get arthritis too?

In the UK, approximately one in every 1,000 children have JIA (juvenile idiopathic arthritis). It can start at any age from birth to adolescence and affects both boys and girls.

WRITTEN BY

Emily Earle Local Network Coordinator, CCAA

Now there is a plethora of treatment options meaning that most children can live a full and active life with JIA Treatments for JIA often come with unpleasant side effects that can be harder to manage than the arthritis itself, children know that they are ‘different’ to their peers which can affect their self-esteem and the variable nature of the arthritis with its periods of flare and remission can be hard to explain and understand.

At CCAA, we offer children and families support both through our local area groups as well as our family residential weekends. Peer support is vital to help families cope and siblings who are often impacted by their brother or sister’s condition are included. We understand the roller-coaster journey that families are on and are able to help them along the way. ©HALFPOINT

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arents may notice a swollen joint, a new limp, a reluctance to use a limb or even a regression from walking to crawling. Pain is not always a feature as children often adapt movements so it can be difficult to spot. Even many GPs are not aware that it is a diagnosis that should be considered. However, the impact of the condition must not be underestimated.

There are several subtypes of JIA and about 10% of children have SJIA (systemic onset juvenile idiopathic arthritis) – this is characterised by spiking fevers and rashes that may come and go as well as the more typical JIA joint swelling and pain. With SJIA, there may be inflammation around organs of the body such as the heart and lungs, so it can become serious if left untreated.

While in the past, many children with JIA went on to develop serious disability and deformity, modern medicine has moved on apace and now there is a plethora of treatment options meaning that most children can live a full and active life with JIA. For many, treatment is so effective that it becomes an ‘invisible illness’ – this can make life difficult for families.

To learn more about RA and understand how you can better support the RA community, visit weRApriority.co.uk

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Managing your arthritis by keeping active, healthy & strong

©IMAGE PROVIDED BY NRAS

The coronavirus lockdown has highlighted, more than ever, the need for people living with arthritis to keep active and healthy.

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he benefits of keeping your body healthy are almost too many to list. Keeping active has been proven to reduce joint pain and improve function.

To promote physical activity, Arthritis Action launched a six-week online exercise programme during lockdown. Classes feature simple, chair-based exercises to try at home, helping to regain and build strength for people who find it difficult to participate in exercise classes.

For every extra pound over a healthy weight, it’s thought an extra four pounds goes straight through the weight-bearing joints.

The benefits of exercise Programme participant Angela Matthews, who lives with arthritis, found they helped get her active again.

“I would never join an exercise class normally because, if you are disabled in any way, you do not have the confidence.

The classes were superb for this.”

“I was suffering badly during lockdown.

I wasn’t able to visit my osteopath or take part in hydropool sessions. I was delighted to take part and will definitely keep up my exercises!”

With constant innovations around exercising online, there are ever more ways to support those with pain or mobility challenges. Looking forward, such online classes will remain part of our plan for improving the lives of people with arthritis.

Healthy weight, happy joints Keeping to a healthy diet can also be helpful in managing painful arthritis symptoms, by lessening the load felt by our joints.

For every extra pound over a healthy weight, it’s thought an extra four pounds goes straight through the weight-bearing joints, which can worsen joint pain. The aim should be to reach a healthy weight and eat a well-balanced, varied diet.

Keeping positive Long-term pain can make people feel low, especially if it becomes difficult to perform everyday activities. Simple techniques including relaxation, meditation and mindfulness can help distract from painful symptoms.

There is no “one size fits all”; by trying different techniques, you will find what works for you.

WRITTEN BY

Martin Lau Registered Dietitian and Arthritis Action’s Services Development

Rheumatoid Arthritis patients must not be left to struggle alone WRITTEN BY

NRAS has responded promptly and effectively to the needs of those with RA during the pandemic.

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heumatoid Arthritis (RA) is an auto-immune condition requiring, in the majority of cases, immunosuppressant medications to control the disease progression. The COVID-19 pandemic therefore caused immense concern, worry and anxiety for the 400,000 UK adults living with RA. People struggled to get clear information and support due to many rheumatology health professionals being redeployed to the front line. Thankfully, the National Rheumatoid Arthritis Society (NRAS) swiftly adapted and responded to fill this information and support vacuum.

COVID-19 and rheumatoid arthritis During March, phone calls alone to the NRAS helpline increased by 600% with many more email and social media requests for help flooding in. It was obvious that many of the questions were very similar, so our first response was to harness digital technology to bring the latest information to the masses.

As CEO, I began running weekly live broadcasts on a Thursday evening, often being joined by leading health experts to answer people’s questions.

As of early August, these 17 live broadcasts have been viewed over 126,000 times. All these live COVID-19 broadcasts are still available to watch back at www.nras.org.uk/nras-live-askyour-questions and monthly broadcasts will continue from now on.

Those who haven’t got it… don’t get it.

As many people with RA were in complete lockdown and having to shield, the need for emotional support also was on the rise. NRAS launched a new service to respond to this called “Here for You”, offering peer support over the phone.

People are able to self-refer online to be put in touch with someone else living with RA who understands what it’s like and can empathise (www.nras.org.uk/here-for-you). As one of our volunteers once said ‘those who haven’t got it, don’t get it!’

RheumZooms NRAS also moved our in-person patient events to virtual, calling them RheumZooms. Our South Coast and Scotland RheumZooms have been incredibly successful in bringing people from specific regions together virtually to have the opportunity to hear from expert guest speakers but also interact in small breakout sessions within the online platform.

Clare Jacklin Chief Executive National Rheumatoid Arthritis Society (NRAS)

As many people with RA were in complete lockdown and having to shield the need for emotional support also was on the rise. NRAS launched a new service to respond to this called “Here for You”, offering peer support over the phone. #OurMindsRApriority The NRAS annual RA awareness week would normally have happened during June but was postponed to 7th – 13th September with the adapted theme being that of ‘emotional and mental wellbeing’, which, for many people, has been severely impacted by this pandemic.

Like all charities, NRAS has been hit hard by the sudden and unprecedented drop in income due to fundraising events being cancelled. Responding to the increased demand – with dwindling resources – certainly presented us with challenges.

That old saying though of ‘necessity being the mother of invention’ has never been more apt.

As well as the new, afore-mentioned, NRAS services, which sprung into life despite staff working from home and some being on furlough, NRAS also collaborated on the pandemic response with many external stakeholders including ARMA(Arthritis and Musculoskeletal Alliance); NHS; EULAR (European League Against Rheumatism); many researchers from across the globe working on studies relating to COVID-19 as well as responding to all four UK nations’ Government pandemic responses and guidelines.

As we head into winter flu season, NRAS is steeling itself to respond to what may be ahead and I would encourage anyone living with RA to prepare themselves by being fully informed of their risk level and what they can do to keep themselves and their families safe. The best way to do this is by connecting with and supporting the charity by joining www.nras.org.uk/join.

Other NRAS services are operating at full capacity and include free publications, helpline support, online referral schemes Right Start (for newly diagnosed people) and Living Better with RA (for those with established disease) both schemes offer tailored and personalised interventions.

Find out more 0800 298 7650 enquiries@nras.org.uk nras.org.uk

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Managing Arthritis