Arthritis and Musculoskeletal Alliance
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  • The Arthritis and Musculoskeletal Alliance (ARMA) is the umbrella body for the arthritis and musculoskeletal community in the UK, and our mission is to transform the quality of life of people with musculoskeletal conditions. We have 40 member organisations ranging from specialised support groups for rare diseases to major research charities and national professional bodies.

Arthritis News

Introduction

Across a range of MSK conditions there is evidence of significant delays to diagnosis which result in avoidable morbidity and mortality. GPs have a critical role to play in reducing time to diagnosis. This article looks at the delays, their impact, and the resources available to GPs to support their referral decisions. Our simple message is #ThinkRheum.

Delay to diagnosis

Significant delay from symptom onset to diagnosis has been seen across a range of MSK conditions: an average of 6.4 yeas in Lupus [1], 8.5 years in axial spondyloarthrtis (axial SpA) [2] and an estimated 10 years in Ehlers-Danos syndromes (EDS).

Although some of the delay can be attributed to patients not reporting symptoms to their GP, the largest delays occur within the healthcare system. These include GPs not referring patients to rheumatology, referral letters to GPs from osteopaths and chiropractors not being actioned, and a lack of understanding among radiologists and other specialties. In a recent study, patients presenting with acute anterior uveitis (AAU) were evaluated clinically and with MRI in order to estimate the prevalence of axial SpA; the study found that one quarter of axial SpA patients were previously undiagnosed.[3]

Impact of the delay

As with all conditions, rapid diagnosis is key to effective medical care and treatment. A delayed diagnosis can mean having to live with prolonged pain, with the untreated disease progressively worsening.

In Lupus, delay in accessing effective treatment also increases the risk of permanent organ damage and disability, and even death [4]. Studies have shown that SLE patients who are diagnosed early, on average, have lower rates of mild, moderate and severe flares, and lower rates of hospitalisation [5]. Early diagnosis can be especially important in cases of lupus nephritis with research demonstrating that a delay between the onset of nephritis and a renal biopsy constitutes an important risk factor of end-stage renal disease (ESRD).[6]

Nadia, who lives with lupus said:

“I developed what I thought were my first symptoms of lupus (joint pain, muscle aches and fatigue) when I was 18 years old. I initially attributed these symptoms to the stress of an unrelated spinal surgery but as I developed more symptoms I started to suspect something else was going on. I was continually dismissed as overly anxious and made to feel like I was a hypochondriac. After developing severe heart-related symptoms and being admitted to A&E three times I started to look for answers myself. I read about lupus and identified with a lot of the common symptoms. I requested blood tests from my GPs which revealed positive results, but the significance of these results were not fully understood.

Finally, last year, at the age of 24 I paid for a private consultation where I was diagnosed with lupus within half an hour and prescribed treatment. The consultant believes that I may even have had symptoms of lupus (interstitial cystitis and anaemia) when I was 15. My diagnosis means that I have had to make significant changes to the way I live my life and I will always need treatment, but I now have answers and I won’t give up the fight. I visit my doctor a lot less now that I have a diagnosis! I was visiting the doctor weekly prior to diagnosis. I would say I go once a month now perhaps? If things are worse maybe every few weeks but overall my visits have decreased.”

In ax SpA, studies have consistently shown that the delay in diagnosis results in significantly worse disease activity index, functional index, spinal mobility and/or radiographic damage [7] as well as poorer treatment response.

One axial SpA patient told us:

“It took me 8 years to get a diagnosis from the onset of my symptoms, and I don’t think I would have been diagnosed now if I had not realised that I had AS from Googling it on the internet. I then went to my GP with a tick list of AS symptoms which I had and basically dared her not to refer me.

I was diagnosed within 6 weeks of that appointment and my family were devastated but I was strangely elated, as I felt like I had an explanation for my pain that could enable others to understand. In the years prior to diagnosis, I wasted hundreds of pounds on acupuncture, chiropractors and osteopaths and was fobbed off by numerous doctors, nurses and physiotherapists. If I had been diagnosed sooner, I feel that I wouldn’t have been viewed as ‘putting it on’”.

Gout is the most common form of inflammatory arthritis worldwide, currently affecting one in 40 people in the UK. It causes sudden and extremely painful inflammatory attacks in the joints (usually developing in the night or early hours of the morning) – most commonly the big toe, ankles and knees but any other joint too. Gout is eminently treatable yet fewer than one in five gout patients are prescribed urate lowering therapy within six months of their diagnosis, and only around one in four is on this treatment a year after diagnosis. Gout is a chronic and progressive disease and is often associated with many other serious health conditions including kidney disease, diabetes, heart attack and stroke. There is also a growing body of evidence demonstrating it leads to an increased risk of death. [8]

Security guard Fred Bloggs had his first attack of gout in 2010 but it wasn’t diagnosed until two years later. Fred feels his recent life has been completely blighted by his condition. He has spent lengthy periods in hospital and, on occasions, has been confined to a wheelchair.

He reckons he has lost thousands of pounds in income due to long periods signed off work (approximately ten weeks on statutory sick pay) and it has badly affected his employment record.  “I started a new job this year and I had a bad attack soon afterwards, resulting in two weeks off work. It’s embarrassing, but what can I do? I’m afraid that I will soon become unemployable because of all my time off work.” Fred spent days trawling the internet for advice about his condition. He tried all the dietary recommendations such as cutting out high purine foods and increasing intake of fluids. “Nothing seemed to work.” He says he doesn’t drink alcohol.  He is now permanently under the care of a specialist and long-term treatment. 

Most types of EDS left untreated result in deconditioning as targeted exercise is key to keeping joints strong and preventing pain and dislocations. Undetected vascular EDS is potentially life-threatening due to aneurysms and organ ruptures. Unrecognised gut symptoms can lead to gastroporesis and the need for tube-feeding in extreme cases. Significant anxiety and depression can result from a delayed diagnosis; people with EDS have often been labelled with a mental health problem at some point in their search for a diagnosis.

Scleroderma affects just under 20,000 people in the UK based on new research published in 2018. Due to the lack of data relating to this rare condition, we cannot give an accurate time to diagnosis. For us this is one of the key challenges as without reliable data we are unable to lobby for change. Based on a survey conducted in 2017 45% of respondents said they waited 3 or more years to receive a diagnosis of scleroderma after presenting with their first symptom. [9]

Scleroderma is a rare and complex condition that presents in many ways, meaning the condition affects different people differently.

Grace, aged 57, has had symptoms of scleroderma since the age of 33, when she was diagnosed with Raynaud’s. It was another ten years before she was diagnosed with scleroderma.

“It was after quite a traumatic birth with my son that I started to notice symptoms, my skin was getting tighter, I had severe reflux and I began to struggle with everyday tasks. After continued visits to my GP, I was diagnosed with Rheumatoid Arthritis and put on various painkillers, which obviously didn’t work.

My breathing was getting worse and I was having repeat visits to A&E, thankfully on around my eight trip to A&E, I met a young doctor who noticed scarring on my lung x-rays. I was given an immediate referral to a lung specialist where I was diagnosed with scleroderma. On diagnosis, I started the maximum course of the chemotherapy, to stabilise the aggressive nature of the disease.

Due to late diagnosis the extent of my disability is huge, as my lungs, skin, heart, kidneys and oesophagus are all affected. I am on oxygen due to my severe lung disease but I still feel constantly breathless.”

 

Across a range of less common MSK conditions, delays to diagnosis result in avoidable costs to the NHS (multiple unnecessary referrals with no outcome; cost of multiple investigations with no useful outcome; inappropriate use of A&E services as no other service can meet immediate need, etc.) and costs to the economy through lost productivity.

Resources for GPs

The good news is that numerous resources are available to help GPs identify patients who may have one of these conditions and who need referral to rheumatology. These include:

GPs are critical to reducing delays to diagnosis in MSK conditions. Educational resources include:

 

Delays to diagnosis are severe, have significant impact on patients and their families and are costly to the NHS and the economy. GPs are critical to reducing delay by earlier referral to secondary care and have access to a range of resources to support clinical decision-making and ensure timely referral.

#ThinkRheum

 

References:

[1] Morgan C, Bland A, Maker C, Dunnage J, Bruce I et al., (2018) ‘Individuals living with lupus: findings from the LUPUS UK Members Survey 2014’, Lupus (27): 681-687

[2] Sykes M, Doll H, Sengupta R & Gaffney K (2015), ‘Delay to diagnosis in axial spondyloarthritis: are we improving in the UK?’, Rheumatology, July

[3] Sykes MP, Hamilton L, Jones C, et al. (2018) ‘Prevalence of axial spondyloarthritis in patients with acute anterior uveitis: a cross-sectional study utilising MRI’. RMD Open;4:e000553. doi:10.1136/ rmdopen-2017-000553

[4] British Society of Rheumatology (2016) A collaborative approach to improving outcomes in rare rheumatic and musculoskeletal diseases: report from a national workshop

[5] Oglesby A, Korves C. Laliberte F, Dennis G et al. (2014) ‘Impact of early versus late systemic lupus erythematosus diagnosis on clinical and economic outcomes’, Appl Health Econ Health Policy April 12(2): 179-190

[6] Faurschou M, Starklint H, Halberg P & Jacobsen S (2006) Journal of Rheumatology, Aug; 33(8): 1563-9

[7] Soe M, Baeek H et al., (2015) ‘Delayed diagnosis is linked to worse outcomes and unfavourable treatment responses in patients with axial spondyloarthritis’ Clinical Rheumatology, 34(8): 1397-405

[8] http://rheumnow.com/content/mortality-gout-increased

[9] RAIRDA patient survey 2017 – extrapolated scleroderma data

Cannon Hill parkrun event, Dec 2011, credit to Paul Holloway.

About a year ago I joined parkrun and I still have the enthusiasm of a new convert. It’s a great way to start the weekend, running in a park with about 300 other people, improving your MSK health as you go, and then coffee and a chat after. So I was delighted to hear that parkrun UK and the Royal College of GPs have launched an initiative encouraging GP practices to become ‘parkrun practices’. GPs in this film talk about why they take part in parkrun and suggest it to patients. The potential benefits of getting patients involved – running walking or even just volunteering – are enormous. No cost to the patient or the NHS. It got me thinking about how the NHS still undervalues the voluntary sector.

A lot has been written about the difficulties of NHS and voluntary sector working effectively together: the different cultures, assumptions and ways of working. Lack of understanding on both sides can get in the way of realising the potential of joint working.

ARMA is in a perfect position to break down some of these barriers, as our membership includes both patient and professional organisations. I wonder what we can do to encourage MSK clinicians and services to maximise the value of the voluntary sector, whether it’s the contribution patient support organisations make, or the public health benefits of parkrun.

Patient organisations also provide a lot of support for clinicians. We know that diagnosing and referring patients with less common MSK diseases is difficult for GPs. Several ARMA members have produced information for primary care staff to help them identify people who need referral to a rheumatologist. To help GPs, and anyone who may be the first point of contact for a person with an MSK condition, we are highlighting these resources during the last week in July. Look out for the information about Less Common MSK Diseases Week on the ARMA website or at #ThinkRheum on twitter.

MSK conditions are complex and impact on all aspects of a person’s life. Living with a long-term condition will always involve a network of support, including healthcare but also family, community and voluntary organisations. The voluntary sector has a big role to play – everything from running to information for GPs.

The Musculoskeletal Knowledge Hub, set up by the Arthritis and Musculoskeletal Alliance and NHS England, is designed to improve MSK services by channeling valuable information and experience to the right people. The MSK hub, launched at the end of April, includes:

  • An online, multi-professional, searchable resource library for people working to support people with musculoskeletal conditions e.g. guidelines, reports, pathways, benefits calculators/cost calculators
  • An MSK forum bringing together experts, experience and knowledge to share views and best practice. Forums are topic related or geographic allowing national or local collaboration.

This is a shared resource for everyone working on any aspect of MSK. The Hub widens the ability of the MSK community to collaborate and share knowledge.

PHASE ONE – HAVE YOU ADDED YOUR RESOURCES?

The first phase of the project is adding to the resources online. Public Health England, Arthritis Research UK, Arthritis Action, the Chartered Society of Physiotherapy are just some of the organisations that added content to the site, and resources are growing. Have you added your reports and guidelines?

The MSK Hub works best as a living, online resource and forum for musculoskeletal conditions.

You can add search the hub or add resources by signing up on the hub at mskhub.org.uk.

ARMA and NHS England invite you to upload your MSK documents to the new MSK Knowledge Hub

If you have musculoskeletal-related articles or documents you’d like to share – and they meet our criteria – please register with the Knowledge Hub on http://mskhub.org.uk and then use the ‘Submit a Resource’ button.

Registering enables you to be part of the MSK forum.

To search or to register, visit mskhub.org.uk today.

The National Institute for Health and Care Excellence (NICE) produces guidance on the most effective ways to prevent, diagnose and treat disease and ill health, and provide social care support. NICE guidance is based on research evidence and takes into account the views of people working in or using relevant services, and other stakeholder groups.

NICE are currently looking for people who have used technology to change their behaviour and improve their health and wellbeing, as well as their carers and those who advocate on their behalf (usually referred to as ‘lay members’ at NICE). We would like them to join the committee developing our guideline on technology-based ways of changing people’s behaviour to improve their health and wellbeing. 

The guidance will cover everyone, including children and young people aged under 16 (as well as their families and carers). The guideline will focus on technology based ways to change the following behaviours people have in order to improve their health and wellbeing:

  • smoking
  • harmful drinking
  • poor eating patterns
  • a lack of physical activity
  • unsafe sexual behaviour
  • managing weight

The guideline will also look at technology-based ways to improve mental wellbeing. For example, ways to build resilience: this is about our capacity to adapt in the face of challenging circumstances, whilst maintaining a stable mental wellbeing, as well as looking at how well people sleep and reducing feelings of loneliness or isolation.

The guideline will also specifically consider the needs of those with the following chronic or long-term conditions:

  • affecting the heart or blood vessels (including high blood pressure, stroke and coronary heart disease)
  • lung disease (asthma and COPD)
  • diabetes
  • affecting the muscles, joints and skeleton
  • mental health (including anxiety, depression and dementia)
  • cancers for which managing lifestyle behaviours would help (for example, lung cancer and quitting smoking)

Recruitment is open until 5pm on Tuesday, 24 July 2018.

Visit this link on the NICE website to apply.

On 22 September 2018, NASS will be in Stirling, Scotland for the first in a series of regional Community Engagement Conferences. In a new style event for NASS, we will be bringing together healthcare professionals, people with AS, other patient organisations and researchers.

Find more event details here including the event programme.

NASS welcomes the publication by NICE of a set of Quality Standards for Spondyloarthritis. Now we need to ensure that they are implemented effectively across the country so that every AS patient, every time, gets early diagnosis and high quality care.

The NICE Quality Standard for Spondyloarthritis covers four areas:

  • Adults with suspected axial or peripheral spondyloarthritis are referred to a rheumatologist.
  • Adults with suspected axial spondyloarthritis and an X-ray that does not show sacroiliitis have an MRI using an inflammatory back pain protocol.
  • Adults with axial spondyloarthritis are referred to a specialist physiotherapist for a structured exercise programme.
  • Adults with spondyloarthritis are given information about their condition, which healthcare professionals will be involved with their care, and how and when to get in touch with them.

Read more from the NASS website.

The inaugural Brain, Mind and Pain Grant announced its winners in June, naming three innovative, patient-centred projects:

  • Master Your Pain by Groningen University – an e-health platform to help patients with rheumatic pain self-manage their symptoms
  • ASPERGA Association for their prototype auditory aid that aims to reduce sensory pain in people with autism spectrum disorder
  • MyBrainNet by Dystonia Europe – a central platform for neurological brain diseases, providing information to patient groups and patients to help improve their quality of life.

The Brain, Mind and Pain Grant is the first grant into chronic pain that is run by patients, for patients. Winners were judged by a jury of patients and patient representative, with the support of scientific experts.

“Patient voices are essential to drive the research and innovation agenda. Our lived experience should be at the centre of every research project because no one knows the disease better than the person living with it,” says patient jury member Joke Jaarsma.

The grant received over 19 applications from over 8 European countries. The grant ceremony was attended by over 100 people, including:

  • MEP Danuta Jazlowiecka (EPP, Poland)
  • MEP Marian Harkin (ALDE, Ireland)
  • MEP Nessa Childers (S&D, Ireland)
  • Pain Alliance Europe President Joop van Griensven
  • EFNA Executive Director, Donna Walsh
  • Mark Fladrich, CCO Grünenthal
  • EFNA President Joke Jaarsma

The Brain, Mind, and Pain Patient Centred Innovation Grant is a joint project run by Pain Alliance Europe and financially supported by Grünenthal, with partner support from the European Pain Federation (EFIC), the European Academy of Neurology (EAN), and the European Federation of Neurological Associations (EFNA).

Guest blog by Tom Embury, Public Affairs Officer, British Dietetic Association.

The Allied Health Professions most commonly associated with arthritis and MSK conditions are probably our colleagues in Physiotherapy and Occupational Therapy, but the British Dietetic Association (BDA) believe dietitians have a key role to play in supporting patients and working with colleagues as part of multidisciplinary teams to prevent and treat these conditions.  

The BDA is one of the world’s oldest nutrition and dietetic bodies and represents the 9,000 or so dietitians working in the UK, as well as students, dietetic assistants and affiliate members. It is well established that diet has an important role to play in protecting against or helping to manage conditions such as osteoporosis and arthritis.

Being overweight or obese is also a key risk factor for MSK conditions, and diet is the single biggest factor in causing or reversing obesity. It is also increasingly obvious that the relationship works the other way, with conditions such as arthritis making eating and preparing food more difficult, and increasing the risk of malnutrition, especially amongst older people.

Joining ARMA is part of the BDA’s efforts to highlight and develop what dietitians do in a wider range of roles, conditions and sectors. In particular, we are currently prioritising the central role we think dietitians can play in prevention and public health. It was the theme of our recent Dietitians Week campaign, which is now in its fifth year, and preventing and managing MSK conditions was one of the many varied roles we featured.

We’re looking forward to learning more from colleagues in this field and contributing the BDA’s perspective to the work of the Alliance. We’re keen to share our resources through the MSK Knowledge Hub, such as our Free Food Fact sheets, which include specific dietary advice for osteoporosis and osteoarthritis, as well as more general health eating advice and nutrient specific information on calcium or vitamin D. We hope by adding our voice to the alliance we can help to transform the quality of life of people with musculoskeletal conditions.

Time is running out to become a Champion of Musculoskeletal Care. The deadline for this unique opportunity is 17 June 2018.

Arthritis Research UK, together with Ashridge Executive Education, have created a bespoke leadership initiative with the aim of driving forward tangible improvements in MSK services within the local health systems of each Champion.

We are looking for individuals who are involved in the design, commissioning and/or delivery of musculoskeletal care, including front-line clinicians, public health practitioners, commissioners and service managers.

The Programme:
Duration of 18-20 months and involves:

  • 5 x residential learning modules at Ashridge Executive Education.
  • Development and delivery of a work-based MSK service improvement project.
  • 4 x Action Learning Sets.
  • Access to Virtual Ashridge – an online learning tool to complement your learning.
  • Ongoing support and connection with Arthritis Research UK and your fellow Champions.
  • Support from a network of mentors; eminent leaders within the MSK sector.
  • Support from a panel of patient insight partners.

Arthritis Research UK are committed to representing the communities within the system that we aim to affect, and so the cohorts of champions will be multidisciplinary and diverse and instead of hierarchical position, we will focus on the potential to lead, adapt to change and deliver impact.

The deadline for applications is 17 June 2018. The interviews will take place between 16 – 23 July, and the programme starts in October 2018.

To find out more, please visit the MSK Champion page.

In March, Dame Carol Black presented a TED Talk on retirement, in which she asked: are we doomed to spend the 30 or 40 years in bed – or could retirement be the start of a new chapter?

Watch the video here on Youtube.

The new NHS Workforce Health and Wellbeing Framework is now available. This is the result of two years’ work with NHS organisations, NHS Employers, NHS Improvement, Public Health England and a range of voluntary sector and government partners. The NHSE appreciate the MSK-specific expertise that we have shared with them on behalf of ARMA.

The Framework will support NHS organisations through an easy-to-use diagnostic tool and a comprehensive range of guidance against fourteen core organisational enablers and health interventions proven to improve staff health and wellbeing. This will enable NHS organisations to develop comprehensive health and wellbeing plans and evaluate improvement over time. 

The NHS Workforce Health and Wellbeing Framework is a diagnostic tool to be used in a flexible way to meet the needs of your organisation. You can use these resources in total or in part to start, revise or re-launch a programme. The framework is divided into two sections, organisational enablers and health interventions.

In May 2018, The European League Against Rheumatism published a set of recommendations designed to help health professionals implement approaches to pain management in inflammatory arthritis and osteoarthritis patients. The aim is to reduce pain and the burden on the individual and society.

Pain is the predominant symptom for people with inflammatory arthritis (IA) and osteoarthritis (OA), mandating the development of new, evidence-based EULAR Recommendations for the health professional’s approach to pain management in inflammatory arthritis and osteoarthritis.

The target users of these recommendations are health professionals in the field of rheumatology, including rheumatologists. Prompt and knowledgeable pain management support can reduce pain, increase functioning and well-being, and reduce individual and societal costs. Practitioners in all healthcare settings should therefore have the knowledge and skills required to help people with IA and OA to better manage their pain; rheumatology health professionals are ideally placed to provide comprehensive, evidence-based, and patient-centred care.

Click on the image to see it full size,
or click here to download this flow chart as PDF.

Pain management typically includes education. Based on the needs of the patient, education is complemented by physical activity and exercise; aids and assistive devices; psychological and social interventions; sleep hygiene education; weight management; pharmacological and joint-specific treatment options; and interdisciplinary pain management. Underpinned by available systematic reviews and meta-analyses, these recommendations enable health professionals to provide knowledgeable pain management support for people with IA and OA. 

A multidisciplinary task force including patient representatives conducted a systematic literature review to evaluate evidence regarding effects on pain of multiple treatment modalities. The task force, which included eighteen members from twelve countries, consisted of patient representatives, nurses, physiotherapists, psychologists, rheumatologists, a general practitioner, an occupational therapist, a clinical epidemiologist, and a research fellow. 

From 2,914 studies initially identified, 186 met inclusion criteria. Based on the reviewed studies and expert opinion, the task force emphasised the importance for the health professional to adopt a patient-centred framework within a biopsychosocial perspective, to have sufficient knowledge of IA and OA pathogenesis, and to be able to differentiate localised and generalised pain. The assessment of patient needs, preferences and priorities; pain characteristics; previous and ongoing pain treatments; inflammation and joint damage; and psychological and other pain-related factors were deemed important.