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Tag: coronavirus-covid19

by Sue Brown, CEO ARMA

I write this one year after the first lockdown was announced. It’s been a year of extremes, from the devastating number of deaths to the incredible success of the vaccination programme. For me personally it has been a year of being proud of the community that ARMA exists to represent and support. It has been a year of incredible collaboration and connection.

Our patient member organisations in particular faced a deluge of enquiries, innovated to provide online support and somehow managed to keep vital helplines open. Our members had more contact with each other than ever before through online meetings. They supported each other, shared intelligence and information. We pooled our information about the impact of COVID-19 on people with MSK conditions and fed this into NHS decision making, government departments and the Vaccines Minister, Nadhim Zahawi.

We provided a platform to share documents such as principles of vaccination and urgent and emergency conditions guidance. We contributed to a document outlining the experiences of people with MSK conditions during the pandemic and hosted a tweet chat on coproduction and MSK. Our coronavirus resources have been the most popular content on our website ever.

COVID-19 will cast a long shadow over MSK services. Some of those who, a year ago, were assessed as being able to wait three months for treatment, have now been waiting a year. Waiting lists have grown immense. People have not come forward with symptoms so there is an unknown level of hidden need that will emerge sometime.

Thanks in part to a small grant from the National Lottery Community Fund, ARMA is still here, growing in membership and increasing in impact and reach. As we reported in last month’s newsletter, there is now a Best MSK Health programme, aiming to ensure that when the NHS rebuilds services and works to clear the waiting lists, we will not go back to how things were before, but forward to improved MSK services. ARMA members are ready to engage with this, supporting transformation of local services, enabling co-production and a voice for people living with MSK conditions in the process.

Our members have risen to the challenges of an extraordinary year. I feel that the importance of MSK is beginning to be recognised. This feels momentous – we have worked for so long to raise the profile of the condition which is the biggest cause of years lived with disability in the UK.

Delivering the best MSK health possible is a not insignificant undertaking. I am confident that our members will rise to this with just as much determination as they responded in the last year.

State of Health reportState of health and care: The NHS Long Term Plan after COVID-19

A new report from IPPR shows the extent to which the coronavirus pandemic has disrupted progress on the NHS Long Term Plan. The report looks at cancer, mental illness, cardiovascular disease and multiple long term conditions, but the findings are equally relevant to MSK services.

The report argues that COVID-19 should not become an excuse for low ambition, and that world-class healthcare must remain the overall goal. To achieve this, the report recommends a package of six ambitious changes designed to do three things:

  • Ensure the pandemic does not cause lasting damage to healthcare services for future generations.
  • Bring in areas – like social care and public health – that are not covered in The NHS Long Term Plan, but which are integral to healthcare.
  • To capture the innovations that occurred during the pandemic.

The six recommendations are:

  1. Ensure a sustainable workforce: a new deal to catalyse recruitment and retention – including a pay rise, a new wellbeing offer, and improved training and progression.
  2. Fund the NHS to deliver and sustain transformation: funding to meet the elective care backlog and rise in mental illness to avoid a trade-off between transformation and the pandemic care backlog.
  3. Empower integration from the bottom up: through system focussed regulation, reformed financial incentives and permissive legislation.
  4. Upgrade the digital NHS: providing internet access as a basic public service, understanding patient preferences and investing in the NHS’s digital infrastructure.
  5. Fund and reform social care: including free personal care for everyone aged 65 and over, improving the quality of social care, better pay for care workers, and immigration rules that do not lead to catastrophic shortages.
  6. Level up the nation’s health: a public health cabinet committee to co-ordinate policy functions across Whitehall, and greater devolution of funding and powers to local government to tackle the primary determinants of health.

Read the full report on www.ippr.org.

PCRMM will be running a series of webinars throughout the year on a variety of subjects. The Society is committed to education and the dissemination of knowledge to help those involved in MSK care improve that care, their own education and generally to promote new findings and advancements.

To this end, PCRMM has put together a series of webinars, led by knowledgeable speakers and experts in their field, on a range of interesting and relevant topics, carefully planned to provide useful information for our members.

There are a number of webinar recordings available to members from the website, including several on rehabilitation after COVID-19.

The next scheduled webinar will be ‘How to translate evidence into practice; Critically Appraised Topic Groups explored‘ on Tuesday 27 April, 7:00 – 8.30pm

Future webinars:
May – MSK Masqeraders
June – Chest Pain
July – Vitamin D
September – Self examination of swollen joints in rheumatoid arthritis
October – NEIAA

Public Health England has released new media resources to promote their coronavirus campaign, ‘COVID-19 Response: Spring 2021.’ These include the ‘Road map’ steps, and an animation explaining the government’s latest social contact rules.

You can access imagery and material from the new ‘Let’s Keep Going’ campaigns, including: ‘Stay Home, Protect the NHS, Save Lives.’

Guest blog by Emily Earle

Emily’s 12 year old daughter was diagnosed with JIA in 2010 at the age of 2. Emily now volunteers for the charity ‘CCAA – Kids with Arthritis’ running their local area network of support groups. CCAA offers support to children with JIA and their families across England and Wales.

Life with a child who has a medical condition can be challenging at any time. Families usually manage because we have to. Quite simply, we do not get the choice to say: ‘No thanks! We’d rather our child wasn’t diagnosed with this condition!’ So we manage. I myself remember this time so vividly – the steep learning curve and sense of disbelief that my two-year-old daughter could possibly have arthritis, something that I previously associated only with old people.

I often use a story, ‘The Uninvited Guest’, to help illustrate what this situation can feel like for families. The story tells of the Ordinary family who live a very ordinary life. One day, the Ordinary family comes home from work and school to find a stranger in their house. This visitor isn’t someone they have invited and they don’t introduce themselves. Eventually, after a long search, they discover that the stranger’s name is ‘JIA’. Now the Ordinary family know who it is, they secretly hope they can get rid of this visitor – they want their previous life back. But JIA has brought them a job offer. This job includes 24/7 work and being permanently on-call: no salary and no annual leave. This job must be fitted alongside their existing jobs and commitments.They ask how long the contract is for and are told it is ‘indefinite’ because ‘nobody really knows’. I don’t imagine there are many parents who would voluntarily apply for this job, but this of course, is the job offer (and diagnosis) that JIA families do not have the option to refuse.

The Ordinary family gradually learns to cope with the havoc that JIA causes in their lives. They train up as home-nurses and add a sharps bin and sick-bucket to their kitchen. They spend hours on the phone coordinating care and attend multiple appointments. The Ordinary parents feel they might have to reassess their working hours and the Ordinary siblings get jealous, saying that JIA gets all the attention. Often, when the family reaches for help, they are faced with a teacher or a GP who hasn’t got a clue about who JIA is and they have to explain all over again. JIA’s behaviour is unpredictable and the parents sometimes disagree about the best way to handle things. The Ordinary family doesn’t feel very ordinary anymore.

Over time, this family reaches a truce with JIA and begins to find their feet with their new life. They move on from the difficulties of their journey to diagnosis; they begin to understand the inevitable ups and downs; they weather successes and failures of medications; they build support networks to lean on: ultimately, they accept that sometimes JIA is a domineering ‘uninvited guest’ and at other times it sits well behaved and quietly in the corner. And the same gradual acceptance of the ‘new normal’ is true for most families who have a child or young person diagnosed with JIA.

But COVID-19 has brought a new chapter to the story. Some families who were coping well have found themselves once again at sea in the face of an additional uninvited guest – the Coronavirus. The pandemic has brought new ways of interfacing with healthcare professionals via phone and video. Hospitals, usually our sanctuaries for help, care and treatment, with nurses and doctors who are almost like family, became places of fear, places where the invisible virus might be hiding. We have had to deal with changing advice as data and knowledge of the virus and its impact on our children has been hastily gathered and interpreted. The instruction for many to shield was removed when research showed our children were deemed to be at no greater risk; while to some this was a relief, for other families it was hard to accept.

In this new chapter, we inhabit a world where the latest government directives tell us what is safe and what is dangerous, what is allowed and what is not. In this climate of daily graphs, data and briefings, it can feel harder than ever for families to wrangle with the comparative unpredictability of JIA, particularly within the four walls of lock-down confinement. There is certainly hope now – the arrival of the vaccines brings surety that eventually schools will reopen and restrictions will be lifted… but beyond this, the uncertainties of JIA remain: will this medication work for my child? When will this flare settle? Will the disease progress or remiss?

At CCAA, like all the charities supporting JIA families, we have been trying our best to listen to concerns and to appease anxieties where we can. Collaboration with healthcare professionals and other charities including ARMA has been vital in enabling us to provide timely and consistent information to the families we support. And throughout this pandemic, the provision of this information has proven to be the most welcomed tool of our arsenal. For while we all miss running our face-to-face events, we know that offering reliable information alongside peer support (the ability to connect with others in the same position) is a great way to make a difference in the lives of ordinary families living with JIA. This is one way in which we can persuade JIA to keep its place as an uninvited yet well-tolerated guest in the homes of families again.

The coronavirus pandemic has changed the delivery of healthcare services, creating challenges for healthcare professionals and people living with musculoskeletal conditions. Patients are increasingly required to monitor their own disease activity and report on their condition during remote or virtual consultations.

To address this, the Centre for Epidemiology Versus Arthritis has been working on the REmote MOnitoring of Rheumatoid Arthritis (REMORA) study. REMORA is a smartphone app study that encourages people with rheumatoid arthritis (RA) to monitor and record their daily symptoms. It then connects this data directly into the patient’s electronic health records and makes it accessible to their clinician.

In the early stages of the study, we recognised the importance of training people with RA how to self-examine for tender and swollen joints, as these are key to tracking disease activity. During the regular Patient and Public Involvement and Engagement (PPIE) meetings, the PPIE group identified that the existing online resources did not meet their needs in explaining how to perform joint self-examination.

The PPIE group were clear that they wanted to develop their own video, addressing the questions and difficulties patients meet when self-examining for tender and swollen joints. The process of development and production took a few months from the initial preparation, to filming, and final editing. At all stages, our first priority was ensuring the safety of everyone involved. Most of the work around the video was coordinated remotely. For the actual filming on campus, we followed all COVID-19 safety measures and rules regarding social distancing and masks.

A number of useful materials were created to support patients while they are self-examining their joints. For example, we created a manikin (human-like model) and a table that allows people to keep track the tender and swollen joints as they go along with the video. We have also written answers to frequently asked questions.

The video on how to self-examine tender and swollen joints was released on February 3, 2021. We were delighted to see how well received it was from both patients and clinicians, receiving over 1,000 views during the first week since its launch!

We would encourage everyone with RA and their clinicians to watch and signpost others to the video. We are really keen to hear feedback from both patients and healthcare professionals through our online survey. This is really important to inform the development of a future version, incorporating feedback and (we hope) to be filmed without the need for masks.

Latest information about the REMORA study and more insights to the development of the video here.

Follow the Centre for Epidemiology Versus Arthritis:

remora-shark man uni logo

Bookings are now open for an upcoming series of free sport and exercise medicine seminars delivered by the Faculty of Sport and Exercise Medicine and the National Centre for Sport and Exercise Medicine that will explore current issues relevant to all SEM practitioners.

Running every Thursday evening in April, the sessions will feature presentations from leading clinicians and academics as well as those with lived experience. Exploring the importance of physical activity in areas like COVID-19 recovery and mental health, these seminars will deliver engaging, informative content that will help improve your practice.

There will be four seminars in the series, focusing on maternal health, cancer rehabilitation, mental health, and COVID-19 recovery respectively. Find out more, or book your place, by visiting the website.

A range of translated social assets have been created by Public Health England to promote vaccine confidence among a wider audience.

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In addition, there are a selection of vaccine explainer videos to promote vaccine information and uptake.