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Arthritis News

CEO update by Sue Brown

One of the things I love about my job is the variety of things I get involved in. The wide scope of what is covered by musculoskeletal health and the variety of ARMA members, partners and stakeholders means no two days are ever the same.  August has been a month to prepare for the exciting variety of activity we have planned including our annual lecture, a roundtable on pain, an event on physical activity and more webinars.

Physical activity has been quite a theme this month, with the launch of the We Are Undefeatable campaign. I love the positive but realistic messaging which is so relevant to MSK conditions. This will help reinforce the messages from clinicians using Moving Medicine or the RCGP Active Practice Charter. My concern is that when people turn up at their chosen activity, be it a local leisure centre, gym or walking group, staff/volunteers won’t understand MSK and will be concerned about them taking part. This is the reason ARMA supports the parkrun Facebook group for people with MSK conditions, as it gives peer support and encouragement for people to be active in a way that works for them.

ARMA is planning an event for providers of mainstream activities to help them understand how to support people with MSK conditions to be active, and to include them in their activities. The emphasis of We Are Undefeatable is on self-management and being more active without medical supervision or special programmes, just like the parkrun initiative. I hope that we can help those motivated by the campaign to get a positive response wherever they choose to go.

The other big theme of my August has been pain. ARMA collaborated on some qualitative research around chronic pain which I presented at a Chronic Pain Policy Coalition event. It is clear that chronic pain is extremely common. It’s not all MSK related, but at lot of it is. The lack of services for chronic pain leaves patients and healthcare professionals alike struggling to know what to do for the best. That’s why we are promoting IAPT-MSK pain in a webinar later this month. It’s why we are holding a roundtable in October to look at how the situation can be improved. Look out for more from us in the coming months on this.

One thing that pain and physical activity have in common is complexity. There are a whole variety of barriers to people with MSK conditions being active and effective multidisciplinary pain services need to be available at every level from community peer support to specialist services. No one can solve either of these issues alone. Work together – then we might stand a chance.

A new campaign, We are Undefeatable, launched on 2 September from Sport England and associated partners including Versus Arthritis.

The campaign aims to help people with health conditions find ways to get active. With a long term condition you are two times more likely to be inactive. Physical activity plays a powerful role, it can help manage 20 or more conditions and reduce the risk of many health conditions by up to 40%.

Sport England are challenging the existing narrative and working with partners to challenge the status quo. They created a unified physical activity campaign which challenges misconceptions and finds a strong emotional platform to engage and motivate and sustain behaviour change across health conditions.  It’s designed with the perspective and lived experience of people with health conditions.

It’s aimed at an audience from ages 30-64 years old and beyond and at people who are doing a little physical activity, less than 30 minutes, or none. For more information see Twitter @undefeatable or www.weareundefeatable.co.uk

British Orthopaedic Association Annual Congress 2019 – One week to go!

10-13 September – ACC Liverpool

The theme for the BOA 2019 Congress is New Horizons in Research, Education and Clinical Leadership, which will be incorporated throughout all of the plenary and breakout sessions. Full Congress registration is now open, register online using the late registration fee, please visit the BOA website for the full rates.

Join Dame Clare Marx on Thursday 12th September for ‘Burn Out… Time to Take Action!’ This session is designed to open a dialogue, increase our understanding and takes some steps towards solutions. As ever explaining the problem is the start, understanding how we can recognise it in ourselves or others takes us further. Knowing how it is seen by the professional bodies and finally the fact that it is not all about us will help us move the dialogue on.

Professor Matthew Costa, on Tuesday 10th September, will be delivering a session on ‘Proving that what we do makes a difference: Trauma and Orthopaedics now and in the future’, this will discuss the basic principles of clinical and cost-effectiveness in a way that is accessible to surgeons, which is set to be very popular. Read more on the confirmed speakers, full registration rates, programme updates, venue and more on the BOA website here.

Following initial policy direction in the Advancing our health: prevention in the 2020s green paper in July, on Friday 16 August the Health and Social Care Secretary Matt Hancock announced an evidence-based review into the NHS Health Check service. Alongside suggestions that checks are personalised in future, the review will consider ‘increasing the range of advice the checks can offer – for example, prevention of musculoskeletal problems’. This is a brilliant opportunity to make sure that people are routinely asked about the health of their muscles, bones and joints at 40 years of age, and are provided with advice to support their musculoskeletal health.

Policy colleagues at Versus Arthritis will be working to develop the case for including musculoskeletal conditions in the NHS health check. If ARMA members have evidence to contribute, or would like to know more please contact policy@versusarthritis.org.

Charity Founder, Ailsa Bosworth MBE steps down after 18 years as CEO of the National Rheumatoid Arthritis Society to take on a new role as National Patient Champion for people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis.

The National Rheumatoid Arthritis Society (NRAS) announced that Ailsa Bosworth MBE, the charity’s Founder and CEO stepped down as CEO at the organisation’s AGM on 26 June and took on a new role as National Patient Champion. Clare Jacklin, who worked with Ailsa Bosworth for the last 12 years, took over as CEO from 27 June 2019.

Ailsa Bosworth founded NRAS, the only patient led UK organisation with a focus specifically on rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA), in 2001 and served as CEO for 18 years.

She made a huge contribution, not just to NRAS, but to the rheumatology community in the UK and Europe. She was awarded an MBE in 2016 for services to rheumatology. Ailsa, despite her own aggressive RA, is not going to retire but will be taking on a new role for NRAS as their National Patient Champion.

This will enable her to continue some of the innovative projects already in progress as well as represent the patient voice for NRAS at home and abroad.

Former Prime Minister and Maidenhead MP Theresa May, the charity’s patron, said: “I first recall meeting Ailsa over 18 years ago when she told me of her struggle with rheumatoid arthritis and her desire to make a change for others living with the condition.

“I was delighted when she asked me to be a patron of the newly formed National Rheumatoid Arthritis Society which she was setting up and I remain proud to be a patron today.

“Despite someone in the UK being diagnosed with rheumatoid arthritis every 20 minutes, this serious auto-immune disease is still frequently misunderstood. I am glad I can contribute to raising awareness of the impact of this awful condition.

“I look forward to continuing to work with NRAS as a patron and would like to take this opportunity to praise Ailsa for her commitment and dedication over the years. I wish Ailsa all the best for her future work as National Patient Champion.”

Incoming CEO, Clare Jacklin added:

“Ailsa’s work ethic, devotion and focus on the needs of those living with these complex conditions is exemplary.

“She has been a mentor to me, and others, and her influence has made an indelible impact on all NRAS staff as well as our members and volunteers. I want to thank Ailsa for all she’s done for the thousands of people living with rheumatoid arthritis and NRAS over the years. I am honoured to have been selected by the Board of Trustees during the succession process to follow in Ailsa’s footsteps.

“It is a privilege to be part of an organisation that delivers high quality services and innovative solutions to meet the needs of those living with, and the health professionals treating these incurable, auto-immune conditions.

“We are a patient organisation led by a purpose – to make a positive, meaningful impact that is reflected in our mission to Change Minds, Change Services and Change Lives which will ensure people can live full and active lives despite living with RA or JIA. I will do my best to serve the charity and the rheumatology community by leading this wonderful organisation and continue to challenge the status quo; empower and educate individuals to better self-manage their disease and strive for equity of access to best care for all.”

Ehlers-Danlos Support UK and University College London Hospitals NHS Foundation Trust (UCLH), have announced (26 July 2019) that they will co-fund the world’s first Ehlers-Danlos syndrome (EDS) nurse. The two organisations have together pledged £119,500, for a two-year pilot. The nurse will be part of a four-person specialist team at UCLH, which sees approximately 600-700 new EDS cases a year.

The care pathway for an EDS patient is extremely complex. For example, one recent patient attending the clinic at UCLH had 97 appointments over a period of one year and was under seven different hospitals. All too often, people with EDS attend multiple appointments with no clear outcome because knowledge about and treatment of EDS greatly varies. Ehlers-Danlos Support UK and UCLH believe that once the EDS specialist nurse is in post, and people with EDS are referred to the UCLH Hypermobility Clinic, patients will benefit from better coordinated care so that when they return to their local area they have one specialist point of contact and move from a fragmented care pathway to a streamlined one.

This will both improve the local management of people’s EDS and reduce the number of hospital appointments they need. At the same time, by contributing to the understanding of the prevalence of systemic EDS symptoms and tracking the healthcare needs of these patients, the EDS nurse will be able to provide valuable input into the ongoing evolution of EDS patient care in the UK.

UCLH consultant rheumatologist Dr Hanadi KazKaz said: “This is an important step in ensuring that EDS patients can access joined-up care and be signposted to a specialist clinic which can greatly improve their treatment plan. We are delighted to be able to offer this additional specialist expertise to patients in partnership with Ehlers-Danlos Support UK.”

Kay Julier, CEO, Ehlers-Danlos Support UK said: “Being able to fund the world’s first EDS nurse is a real milestone in how EDS is diagnosed and treated. Despite affecting at least one in 5,000 people, it remains misunderstood and the result is that people with EDS experience extremely cumbersome and frustrating care. Thanks to the funding from the EDS community who have donated and fundraised over the years, we are now in a position, through our partnership with UCLH, to affect what we hope will be real change.

“The EDS nurse will be able to ensure a much more effective post diagnosis care pathway for patients. By also reducing the cost of care to the NHS we are hopeful that after the trial the NHS will be willing to fund the position long term, and we are looking at how we can seed fund similar positions across the UK,” Julier concluded.

The Ehlers-Danlos syndromes are a group of genetic connective tissue disorders, which impact the whole body. One type of EDS (vascular EDS) is life-limiting. Those suffering with EDS can have chronic pain, frequent joint dislocations, fatigue, allergy-like symptoms, gut, bowel and bladder problems as well as sudden collapses. Currently in the UK, the average time to diagnosis is 10 years. It is hoped that interviews for the role will commence on Monday 19th August 2019, with a view to the successful applicant being in place by early November 2019.

If you would like to apply for the role, please visit: jobs.uclh.nhs.uk.

NASS logoby Jill Hamilton, Professional Engagement Manager, National Ankylosing Spondylitis Society

On 22 July 2019, the government quietly published their green paper Advancing our health: prevention in the 2020s. There has been a lot of commentary in the media, although it has been hugely overshadowed by activity in Westminster and the appointment of a new Prime Minister.

What is a green paper?

A green paper is a consultation document. This means that this isn’t the final version and so people both inside and outside parliament are able to comment on policies being proposed.

Relevance axial SpA (AS)

Many people may read the title of the paper and think to themselves ‘this has nothing to do with AS, you can’t prevent it from happening’, and they would be right about axial SpA (AS) not being preventable, but not that this paper has nothing to do with people living with the condition.

Musculoskeletal (MSK) conditions are problems with bones, joints and muscles, and axial SpA falls into this broad category. MSK conditions are mentioned a significant amount in the paper, particularly when it comes to the amount of disability caused by MSK conditions. Axial SpA (AS) is not specifically mentioned.

There are many areas of the paper which can be directly applied to axial SpA (AS), including a very heavy emphasis on physical activity, mental health, access to work and social prescribing.

The paper is also asking for evidence on musculoskeletal conditions including:

  • raising awareness of MSK conditions among the public
  • the role of physical activity
  • population-level behaviour change programmes
  • action to support staff in the workplace
  • links between mental and MSK health
  • What data should be routinely collected on MSK conditions

 

Is it slightly disappointing that awareness of MSK conditions amongst health professionals is not a focus, as is the lack of recognition of the role of the voluntary sector, which NASS will include in their response. You can read the open letter from National Voices members, including NASS, which was published in The Guardian a few weeks ago in anticipation of this paper being published.

NASS plan of action

The consultation is running from now until 22 October. During this time, NASS will put together a comprehensive response to the paper, ensuring that people with axial SpA (AS) and the Medical Advisory Board are consulted on their views before the submission of a final version. The response from NASS will be very specific to the AS community. NASS will also work with the Arthritis and Musculoskeletal Alliance (ARMA) on a joint response from the whole MSK community which will be more general.

APPG for Axial SpA

The All-Party Parliamentary Group for Axial Spondyloarthritis will also be working to prepare a response to the consultation, led by NASS and will look to ask parliamentary questions on the paper when parliament reconvenes in the autumn.

by Sophia Steinberger, Health Intelligence Analyst and Jonathan Canty, Policy Officer, Versus Arthritis

How many people have musculoskeletal conditions in the UK? How are these conditions affecting their lives? What is the breakdown by age, gender, and condition? What is the impact of MSK conditions on work, health services, and the wider economy?

This month Versus Arthritis published the annual State of Musculoskeletal Health 2019 to help answer these questions and many more. The report presents a collection of the best available data on the prevalence, risk factors, comorbidities, and impact of MSK conditions in the UK, to help further the understanding about the people living with and affected by these conditions.

Musculoskeletal (MSK) conditions such as arthritis and back pain affected an estimated 18.8 million people across the UK in 2017. They accounted for more than 22% of the total burden of ill health (morbidity) in the UK, and low back and neck were the biggest cause of ill health overall across all ages.1 While these conditions are incredibly common, many people affected are still not receiving the recognition and support they deserve and need.

The State of Musculoskeletal Health is a resource for health professionals, policy makers, public health leads and anyone interested in MSK health. We believe that with the best information you can build awareness, make more informed decisions, feel more confident and ultimately help more people with MSK conditions.

Read the full report here, which includes powerful short stories from people with arthritis themselves.

1 Global Burden of Disease Collaborative Network. Global Burden of Disease Study 2017 (GBD 2017) Results. Institute for Health Metrics and Evaluation (IHME), Seattle, 2018.