This is a category taken from the full feed of Musculoskeletal and Arthritis news provided by ARMA's members.

Resources

September always kicks off with a huge surge in requests to the Hypermobility Syndromes Association for assistance with children struggling with school. The HMSA produces a booklet called ‘The Educators Guide to the Hypermobile Student‘. This booklet, beneficial for parents and those in education, can help explain the impact of these conditions on the individual in an educational setting. The guide is available from the website shop, hypermobilityshop.org, and is currently at a reduced price.

Students going into secondary school often start having problems because of the environmental change. Secondary school usually means bigger and heavier backpacks, a larger campus, many flights of stairs and changing classrooms several times a day. The booklet can help you to find ways of reducing the physical stress on our children. Usually, by Christmas children have started to develop the stamina to get through a school day and all may be well from then on.

However, a few children also start creeping into the stage where we see the highest new diagnosis rates of hypermobility … puberty! Others may struggle to keep up with their peers or with feelings of being different. This is the worse age, emotionally, for children to feel they are so different from peers and they often need more support emotionally.

Don’t be afraid of asking questions in the HMSA Family and Education group on Facebook. This group has teachers, OTs, nurses and SENCOs and of course, other families going through the same issues. There is also a section for primary school children to read about their conditions on our website hypermobility.org.

Parents and teachers can also speak to HMSA helpline (033 3011 6388) staff, who will do their best to assist you or find someone who can.

Guest blog by Professor Anthony Woolf, Chair, ARMA

[Republished from the NHS England blog]

Musculoskeletal (MSK) conditions have a huge negative impact on the health of the population.  People with MSK problems making a first approach to health services can find it difficult to access the right support and some experience delays in getting the correct diagnosis and management, which can result in prolonged impact such as ongoing pain and work loss.

Launched a few weeks ago, the Musculoskeletal core capabilities framework for first point of contact practitionershas been developed in partnership by the Arthritis and Musculoskeletal Alliance (ARMA), NHS England, Skills for Health, Public Health England and Health Education England to ensure that people with MSK problems get what they have expressed they want – rapid access to diagnosis and early management advice, being fully involved in their care through shared decision-making and self-management. They want confidence in the advice they are receiving and in the capabilities of the health practitioner, their problems and concerns understood and responded to and they want a holistic approach to their problem.

This framework aims to ensure that the range of healthcare professionals who work with patients with MSK problems can play a full role in helping to manage any MSK problem appropriately at the first point of contact.  Working in a team and sharing challenges, first contact MSK practitioners can ensure the person with an MSK problem gets rapid access to the right support without the person getting lost in what can feel like a maze of different care pathways. The first point of contact is important to ensure that potential emergencies are recognised and that the next step in the pathway occurs seamlessly and as efficiently as possible.  This will also help relieve pressures on primary and secondary care. 

By making it clear what capabilities are required, we hope the framework will encourage training and development to increase the number of practitioners from different professions who will fulfil this vital role. Importantly, this is not about creating a new MSK workforce as many already fulfil this role, but is about recognising existing capabilities within practitioners’ scope of practice and ensuring services are delivered consistently by multi-professional teams.  One challenge might be that we have all become too ‘specialised’ in healthcare, but the person with the MSK problem wants and needs a holistic approach to get the best outcome.

This framework of core capabilities offers clear definitions against which to improve and assure – for employers, clinicians, regulators, primary care training hubs, commissioners and practitioners themselves.  It also emphasises the need for modernised skill sets that support person-centred approaches and include shared decision-making, prevention, and support self-management and focuses on what enables people to stay active and independent.  Most importantly it will give the public assurance of the capabilities of the person they are seeking help from.

There is a growing consensus across health and care for new approaches and targeted interventions to promote healthier ageing. This framework has been developed by the whole musculoskeletal sector – including patients and health professionals – collaborating on an issue we all agree is important. It is focused on the needs and expectations of people with MSK problems; with recognition by the health professions that there needs to be harmonisation of core capabilities across the sector to ensure that the right care is provided from that first point that someone presents with an MSK problem seeking a solution.

ARMA is pleased to have played a part in creating this framework that should make a real difference to patient outcomes.

Arthritis Research UK has developed the educational package Core Skills in Musculoskeletal Care. It has been created by GPs for GPs and aims to support professionals ‘get the basics right’ in musculoskeletal care and equip GPs with the essential knowledge, skill and confidence needed to manage the most common MSK conditions seen in primary and community care.

The package consists of the popular e-learning module hosted on the RCGP website as well as the new hands-on, interactive workshops.

See a video of the workshop in action.

Workshop dates:

  • Glasgow 25 September 2018
  • Manchester 1 November 2018
  • London 27 November 2018

Places are filling up fast so book today to avoid disappointment: www.coreskillsinmsk.co.uk

ARMA policy teams and CEOs collaborated to agree a Policy Position Paper on Supported Self-Management for People with Arthritis and Musculoskeletal Conditions. The Policy Position Paper sets out recommendations for change.

The evidence identifies the importance of patients as partners in their own care. While people with musculoskeletal conditions can play a pivotal role in their condition, most are simply unaware of the difference they can make. That’s why the Alliance believes people should be supported to take a proactive role in their health, to live well, feeling confident and in control of their condition with supported self-management. Currently, supported self-management sits at the side-lines yet it works – it improves quality of life and clinical outcomes. In the paper, recommendations include a whole system, integrated approach across the care pathway, joining up public health messaging and clinical care.

ARMA works in partnership with our members and other stakeholders. Please get in touch if you would like to work with us to promote this paper, would like us to write a blog or article for your publication or are interested in other collaboration.

The MSK physio-themed review is now live.

Moving Forward – Physiotherapy for Musculoskeletal Health and Wellbeing  highlights evidence from the National Institute for Health Research and others on why research in this area matters, assessment and matching patients to treatment, restoring musculoskeletal health and maintaining musculoskeletal wellbeing.

 

It features:

  • 37 published studies
  • 25 ongoing research projects
  • Questions to ask your physiotherapy musculoskeletal services

 

You can download this review from the National Institute for Health Research website.

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

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.

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.