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Arthritis News

by Sue Brown, CEO ARMA

At the end of Bone and Joint Week (12 – 20 October) I reflect on how much things have changed in just ten days. It is an increasingly worrying time for both healthcare professionals and people with MSK conditions. The response to Covid-19 has already had a significant impact on the MSK health of the nation. The need for good MSK services has grown. During lockdown people worked from makeshift home offices, were less active and many were afraid to use NHS services even when they needed them.

The pause in services this spring was necessary, but it is worrying that MSK services seem to have been first to move to urgent and emergency patients only. Now that things are restarting they are returning to normal services slower. Looking at the proportion of normal elective care provided in August by speciality, orthopaedics and rheumatology both fall in the bottom four specialities. This is not acceptable. Waiting in pain impacts people’s physical and mental health and ability to work. Delays in accessing treatment such as joint replacement surgery can have long term serious impacts on health.

Now, as levels of the virus begin to rise again, we all hope that services will not need to reduce to the extent they did in spring. We all know this might be unavoidable. There was a lot of learning in spring about what helps stretched MSK services. ARMA, along with other stakeholders, has worked with NHS England & Improvement, to listen to the experience of people living with MSK conditions and identify innovations which may help us all through the coming months. These are some of the key messages:

Innovation in services

Many MSK services innovated and adapted to lockdown. The best examples of these are now being published on the NHS Change Challenge website including information about how they were done and the benefits.

Use patient organisations

Many of ARMA’s patient member organisations were deluged with queries during lockdown and despite reducing income they stepped up magnificently. They are not a replacement for NHS services; they provide vital additional support including advice, information, peer support, online groups and networks. Make sure patients know these resources exist.

Listen to patients

The MSK Lived Experience Group has collated intelligence from a range of sources to find out the impact on people living with MSK conditions and produced a report of the themes that emerged. National Voices has also produced a report: What We Need Now, What matters to people for health and care, during COVID-19 and beyond, which includes recommendations for system leaders and those designing and delivering services.

Communication, communication, communication

The thing people want most is to know what is happening. They want to know how long they might be waiting, what they can do while they wait, and they want to be reassured that they are not forgotten. If people are offered treatment, they also need to have the measures that will be taken to keep them safe explained. It’s easy to forget when you are surrounded by all the safety measures that the public are unaware of this and very frightened of contracting the virus in healthcare settings.

Self-management

People who are waiting can do things to support themselves, and there are resources that can help. This page signposts people to online resources to help them to help themselves. People are worried and stressed. It’s hard to keep going, so provide encouragement, support and links to appropriate patient organisations.

The vital importance of MSK services must be recognised. MSK health is what keeps us mobile, active and independent. It’s what helps us maintain our general health. Poor MSK health has a huge impact on the NHS and the economy. Now more than ever we need our population in the best possible MSK health.

Joint statement from professionals and patients on MSK services in the event of a second wave of Covid-19

With cases of Covid-19 rising and the prospect of increased pressure on hospitals this winter as a result, it will be unacceptable for the NHS to respond to this by treating only urgent and emergency cases in musculoskeletal (MSK) services.

As organisations representing patients and professionals, we recognise that this was a necessary response in spring of this year. However, it came at significant cost to patients’ physical and mental health, and the resulting suffering will continue for many months, perhaps years, to come. People needing surgery such as joint replacement, people needing to see rheumatology specialists and people needing access to community MSK services were all hit hard in the effort to ensure that the NHS could respond to Covid-19 patients.

With the benefit of all the learning of the last six months, the NHS needs to ensure that pathways for MSK patients are kept open as much as possible. There have been many beneficial innovations in MSK services in response to the virus which will help maintain services. Services also need to make the maximum possible use of available resources to support self-management including patient support groups, such as our patient member organisations, who can help ease the pressure on the NHS. The government must act to ensure that the NHS has the testing service it needs, and steps are taken to manage infection rates, so that the NHS does not see the suspension of much of its core services.

Before the pandemic, many MSK services, and especially joint replacement waiting times, were falling well short of targets. This situation is now significantly worse with much longer waiting times, backlogs of missed appointments and concerns that people with serious conditions may not have yet been able to access diagnosis, still less treatment. In England as at the end of July, there were over 36,000 people were waiting more than 18 weeks for rheumatology treatment.  There were also over 320,000 people who have been on the waiting list for over 18 weeks for trauma and orthopaedic care, including joint replacement surgery. They are likely to be in considerable pain, with reducing mobility and experiencing deterioration of their overall physical and mental health.

“If my RA continues to worsen this may impact my chances of remission. Just prior to lockdown we were discussing changing my meds; that is off the table for the foreseeable.”
(Person living with Rheumatoid Arthritis)

Delays in treatments lead to much poorer outcomes, with a long-term impact on people’s ability to remain active and in employment and to manage their general health. Delays in diagnosing inflammatory and autoimmune conditions can lead to irreversible damage with long term impact on the individual and cost to the NHS of subsequent treatment. Delays in accessing joint replacement surgery result in worse outcomes and deterioration in general health and fitness.

“I feel I’ve been forgotten about. I have so many questions as I was diagnosed in February 2020, and it was while I wasn’t able to have a face-to-face appointment at the doctors, so he told me on the phone and wasn’t helpful at all. I’ve been told the diagnosis but with no info regarding what to do next – I desperately need advice on what next with medication or physio but I’m just waiting and waiting.”
(Person living with Axial Spondyloarthritis)

“I’m generally an upbeat person so I’ve been able to deal with it, but it’s becoming hard to keep going physically and mentally.”
(Person living with rheumatoid arthritis, osteoarthritis and asthma.)

Inability to access community MSK services leads to reduction in function and muscle strength and increased pain. These services are already under additional pressure due to post-Covid rehabilitation and the impact of lockdown on people’s MSK health. In this context, redeployment of significant numbers of community MSK staff to respond to a second wave is untenable.

MSK health, and therefore MSK services, are vital to people’s ability to live healthy and active lives. It would be unacceptable for MSK services to be expected to shut down, and people with MSK conditions to face the same inability to receive the treatment they need, a second time.

ARMA Members:

  • Arthritis Action
  • BackCare
  • British Association of Sport Rehabilitators and Trainers
  • British Chiropractic Association
  • British Dietetic Association
  • British Orthopaedic Association
  • British Society of Rehabilitation Medicine
  • Chartered Society of Physiotherapy
  • College of Podiatry
  • Ehlers-Danlos Support UK
  • Faculty of Sport and Exercise Medicine
  • Fibromyalgia Action UK
  • Hypermobility Syndrome Association
  • The Institute of Osteopathy
  • Musculoskeletal Association of Chartered Physiotherapists
  • National Axial Spondyloarthritis Society
  • National Rheumatoid Arthritis Society & JIA
  • Podiatry Rheumatic Care Association
  • PolyMyalgia Rheumatica and Giant Cell Arteritis UK
  • Primary Care Rheumatology Musculoskeletal Medicine Society
  • Psoriasis Association
  • Rheumatology Pharmacists UK
  • Royal College of Chiropractors
  • RCN – Rheumatology Forum
  • Scleroderma & Raynaud’s UK
  • Society of Musculoskeletal Medicine
  • Society of Sports Therapists
  • UK Gout Society
  • Versus Arthritis

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At 7pm on 21 September 2020, people living with musculoskeletal conditions and healthcare professionals and policy influencers congregated in anticipation of a tweet chat on Twitter – ‘Power to the People.’

The tweet chat encompassed co-production of a new NHS MSK strategy – patients and healthcare professionals improving care together. The discussion for that hour involved 51 people, 279 posts, 1197 engagements. The #MSKCoPro was seen over half a million times by over 100,000 users.

If you missed it, there were too many tweets to publish them all, but here are some of the themes that emerged in response to questions about:

Please feel free to continue the chat using #MSKCoPro.

What gets in the way

A number of practical issues were identified such as people thinking it takes too long and lots of meetings but no action. Some very interesting discussions about power and about professionals’ vulnerability.

What helps

Lots of themes came up including giving patients control of the agenda, showing the difference their input will make, listening to patients, raising awareness and demystifying coproduction, the importance of taking time to build relationships. A lot about the fact this requires culture change.

Practical examples of coproduction in action

ESCAPE-pain has been awarded the ‘MSK Care Initiative of the Year’ at the HSJ Value Awards 2020.

The programme was awarded this prestigious award in recognition of its outstanding contribution to delivering better services and driving better outcomes across its organisation and delivery partners over the past 12 months.

The judges felt this this was an excellent initiative which enables self-management for people with hip and knee pain. Clear rationale was given for the initiative with supporting evidence and references, which has led to improvement in patient care. The team demonstrated great overall cost saving benefits to the system in terms of total and social health, and the overall ambition to improve general health, fitness and wellbeing was commendable.

This year’s judging process followed a different format due to the coronavirus pandemic. Finalists were asked to create a video presentation to submit for review by the judging panel, which is formed of a wide range of well-respected figures from across the UK healthcare community.

Read the HSJ’s project showcase document for the winners, highly commended and finalists in the ‘MSK Care Initiative of the Year’ category.

ESCAPE-pain stands for Enabling Self-management and Coping with Arthritic Pain using Exercise. The initiative, which has been running for 6.5 years, is an evidence-based and cost effective group rehabilitation programme for people with chronic joint pain. The programme integrates education, self-management, and coping strategies, with a personalised exercise regimen for each participant. The programme has been shown to reduce pain, improve physical function, improve quality of life and mental wellbeing, reduce healthcare utilisation, and is more cost-effective than usual care. The flexibility of ESCAPE-pain means it can be delivered in a variety of locations and by a range of professionals. The programmes have been successfully delivered in outpatient physiotherapy departments, leisure centres and local community settings by healthcare and exercise professionals.

On being awarded this accolade, Professor Michael Hurley from the Health Innovation Network comments, “We are absolutely delighted with this award. It means a great deal to us to have been judged to be the ‘MSK Care Initiative of the Year’, especially as there were so many great initiatives we were up against. The judges clearly were impressed with the general ethos of the programme about self-management, its effectiveness, and benefits that it brings to individuals and the healthcare system as a whole. We hope the award gives a boost to ESCAPE-pain that we believe can make a major contribution to the post-COVID NHS ‘reset’.”

He continues; “I really want to thank the MSK team based at the Health Innovation Network (HIN) for all their hard work and dedication. I am really proud to work with them. But also everyone who has contributed to the successful spread of ESCAPE-pain – the participants coming onto the programme, the facilitators who deliver the programme, the NHS, leisure and community partners who ‘took a punt’ with us and the programme, the HIN Directors, our Academic Health Science Network (AHSN) colleagues, Sport England, Versus Arthritis and many individuals who have given their time and consideration to support us. Without their time, effort, morale and financial support ESCAPE-pain could never be the success it has been.”

The editor of the Health Service Journal, Alastair McLellan, offered his congratulations to the teams on their success, “The entrants this year have been of incredible calibre, and each of the winners at the HSJ Value Awards 2020 have been chosen based on their outstanding commitment to delivering value and efficiency across their organisation, I’d like to offer my congratulations to ESCAPE-pain at the Health Innovation Network on winning the ‘MSK Care Initiative of the Year’ at this year’s HSJ Value Awards.”

Winners were announced on the HSJ Awards Twitter to their 7,000+ followers 4 September. You can view the tweets from across the day by visiting @HSJ_Awards on twitter or searching for #HSJValue.

Find more information on the HSJ Value Awards webpages.

With cases of COVID-19 currently rising across the UK, there are discussions of a second wave resulting in a spike in COVID-19 -related hospital admissions this autumn. In the first wave many of the activities of the NHS were put on hold as a precaution to preserve capacity. This was understandable in the face of a rapidly escalating and unpredictable threat. However, the BOA is keen to help ensure that in the event of a second wave the normal care of our patients is only suspended as a consequence of absolute necessity.

You can read the full statement on the BOA website.

Versus Arthritis has launched a new free physical activity programme, Let’s Move with Leon, designed and presented by exercise expert Leon Wormley who specialises in working with people with arthritis and related conditions. The programme consists of weekly 30-minute movement sessions delivered right to a subscriber’s email inbox. Leon’s classes are a holistic, full-body programme and – they’re great fun!

Anyone can sign up to Let’s Move with Leon here.

For people who are not yet ready to commit to a weekly exercise, we also launched the Let’s Move programme. Let’s Move provides a wide range of content – from exercise videos to stories and interviews with experts – on social media or straight to people’s inbox. People can sign up to Let’s Move emails here.

The PCRMM Society is delighted to confirm that the PCRMM Annual Conference will be going ahead as an online virtual event this year, on 12-13 November 2020.

The Society is not letting these difficult times affect the content of the conference, which will be as interesting, engaging and valuable as ever!

The title of the conference is “First Contact Practitioner and the Evolving MSK Workforce.

PCRMM Society is the only UK society representing clinicians working in Primary Care who are dealing with MSK problems on a daily basis. MSK problems amount to 15% of UK Primary Care consultations and the Society and conferences have served to upskill and support Primary Care clinicians including GPs, FCPs, physios and Advanced Practitioners.

The coming online conference will bring together a wide-ranging group of experts to educate and foster discussion. There will be a dedicated FCP stream to upskill colleagues in diagnosing inflammatory arthritis and managing abnormal blood tests.

The PCRMM Society is pleased to announce that Amanda Hensman-Crook who has been working on the FCP Competency framework and Roadmap with HEE will be opening this part of the conference.

The event will cover common Primary Care MSK problems such as OA, gout and spondyloarthritis in the rest of the conference with a dedicated OA symposium, so sign up for a fantastic value conference.

FOR MORE INFORMATION ON THE PROGRAMME AND TO REGISTER PLEASE VISIT THE CONFERENCE REGISTRATION PAGE.

If you would like any more information about the PCRMM 2020 Conference, please email contact@pcrmm.org.uk

In July and August 2020, NRAS ran a survey asking about the impact of the Covid-19 lockdown on the working lives of people living with rheumatoid arthritis or another form of inflammatory arthritis.

The survey received 348 responses and a short report will be published next month. The overall picture is a concerning one: people reported that their career opportunities, in-work support and the understanding they experienced from colleagues and employers dropped slightly during lockdown. Asked about their expectations for the future, many expected this trend to get worse.

The survey brought up positives as well: most respondents spoke of getting appropriate support and that most employers and colleagues were understanding. Many reported more flexibility from their employers – 66% were supportive or very supportive of those shielding; a further 23% were ‘only as supportive as necessary’.

The NRAS report will go into all this in more detail, but it is already clear that we must encourage employers to support staff with long-term conditions, highlight the resources and support available to them to do so, and highlight examples of good practice.