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Guest Blog

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.

by Clare Jacklin, Chief Executive, National Rheumatoid Arthritis Society (NRAS)

We have been in the grip of this pandemic now for over a year and I’m sure you are all feeling, like me, rather fed up of it! Perfectly understandable, but we must not lose sight of that light that is at the end of this dark tunnel; and we ARE getting ever closer. The one thing I am struggling to comprehend is this talk of ‘going back to normal’. It is NORMAL that got us into this situation in the first place! I, for one, do not want to go ‘back’, I want to look forward. I want to look forward to a better, healthier world where we all take action to look after each other and our planet, far better than we have done so to date.

Even if/when every single person across the world gets a COVID vaccine, this and other viruses are here to stay. New strains of coronavirus or another virus will exist, and therefore our way of living has changed irreversibly. I worry that the media leads us to thinking the COVID vaccinations are the full solution. They are certainly a big part of the solution, but it will require a global change in behaviour to return to the sorts of freedom of movement that we all enjoyed pre-pandemic. While that sounds negative, I do not mean it to be. I would like to see us all embrace this opportunity to hit the ‘reboot’ button. Mother nature is inviting us to ‘reset’ and ‘refocus’ and I am hoping I can respond positively to that invitation, but it will not be easy. Change never is easy.

At NRAS we are doing all we can to help those living with RA and JIA make those small everyday changes to hit those ‘reset’ buttons. This pandemic has made our charity look at how we can respond to the needs of those living with inflammatory arthritis in a different way. Little did I think just over a year ago that I’d be broadcasting live on Facebook to thousands of people on a regular basis. But that was what was called for and so we had to respond. The last Facebook Live (with me and my colleague, Nadine, hosted with Dr James Galloway) has now been viewed by over 15,000 people! Quite daunting really, but it shows how much people are reaching out for information and needing patient organisations in this time of crisis to be there to answer their questions and offer reassurance.

All the NRAS COVID Facebook Live content can be viewed here.

Early on in this pandemic the local NRAS groups had to stop meeting in person, which left a void for many in obtaining that peer support which is so important. Many NRAS groups are now meeting regularly via Zoom which a year ago I would not have thought would work but it’s great to see the groups embracing these new ways of engaging. Likewise, another new service triggered by the COVID crisis to reduce feelings of isolation was the Here for You service where individuals can register via the website rather than via the NRAS helpline to receive a call from a trained volunteer.

I’m delighted that the ‘New2RA Right Start’ and the ‘Living with RA’ services have both seen an increase in uptake, which has been easing some pressures on overstretched rheumatology units to deliver that wrap around care and patient education during this pandemic.

One great change over the last year for me personally has been the increased interaction and collaboration with other professional and patient organisations that being a member of ARMA has facilitated and enabled. The ARMA regular meetings during this pandemic has, in my mind, been the MSK community’s equivalent of the government’s COBRA! Thanks to the leadership and dedication of Sue Brown, ARMA Chief Executive.

I’d like to take this opportunity to express my immense gratitude to all working in the NHS as well as my friends, colleagues and volunteers across the MSK community for their resilience and fortitude. Together we will build back to better!

by Hannah Oladugba, Physiotherapist, ACPT Network

When I first decided to become a physiotherapist, I looked to my search engine (I believe this was ‘ASK Jeeves’ at the time) for as much information on the profession as possible. I quickly found that physiotherapy is, traditionally, a profession that has long been perceived as Caucasian and middle class. And even in more recent years, research has shown that, from 2017 to 2018, only 19% of all UK physiotherapy programme student enrolments were from a Black and minority ethnic background. I say all this to highlight that when I started my physiotherapy MSc degree in Scotland, like many Black students, there were times where I felt alone or isolated, as neither the students, lecturers nor clinical educators represented me.

During my last placement in London, I was supervised by the first male Black physiotherapist I had met. Until then, I did not realise how empowering it was to see yourself represented in your workforce. At my first job, I met Esther, the first female Black physiotherapist I had worked with. I was ecstatic, I felt seen and represented. Esther and I became friends; she helped me with my interview skills, and I helped her navigate workplace dynamics. We were able to share experiences that ultimately made us better physiotherapists. After a dinner, on a very hard day at work, we founded the ACPT (African Caribbean Physiotherapy) Network. It is a space for Black physiotherapists to gain a sense of belonging to a group of people with diverse and yet similar experiences.

The ACPT Network’s mission is to create a strong, visible, and a positive community of aspiring and qualified physiotherapists from an Afro-Caribbean heritage within the UK. Our vision involves building a support network that provides mentorship, skills-based workshops, and transferable professional skills to equip and facilitate continuous professional development. The network was founded on the belief that being of African-Caribbean heritage should not limit personal and professional development in an historically, Caucasian, middle class profession. As a result, ACPT Network aims to bridge the gap of under-representation and connect like-minded individuals in a safe, comfortable environment to enhance the visibility of diversity within physiotherapy.

As ARMA is the alliance providing a collective voice for the arthritis and musculoskeletal community in the UK, I believe that it is important that we continue to work together to ensure that this collective involves the voices of networks like ACPT. This is key as the nature and culture of the healthcare presents some unique issues for some cultural and faith groups with the Black community, and this should be considered in policies and practices regarding musculoskeletal (MSK) disorders in the UK. It has been a privilege to witness the work of ARMA and see the changes the collective has made. Importantly, I look forward to seeing spaces like ARMA further embrace and actively seek the representation of Black and minority ethnic groups.

The ACPT would love to hear from you so please follow us on all our social media pages.
Instagram: acpt_network
Facebook: ACPT Network
Twitter: ACPTNetwork

by Andrew Bennett, National Clinical Director for Musculoskeletal Conditions NHS England and NHS Improvement

It’s been a year since I was fortunate to attend the annual ARMA lecture at the canal museum in London and enjoyed a fantastic talk by Brendan Stubbs about physical activity and mental health. New to the role of National Clinical Director for MSK, this was the first time I met Sue Brown the CEO of ARMA, as well as number of other colleagues from the MSK world. Little did we all know at that time about what lay ahead, and the close working relationships we would develop.

What followed has been a rollercoaster of a year. The coronavirus pandemic has impacted us all both professionally and personally, and as an MSK community we must all take pride in our collective response. Professionally we have rapidly adapted our provision, worked out of our comfort zones, and dealt with a wide range of significant challenges. We have had to balance increased workplace stresses with the personal impact of the pandemic. We have to juggle social distancing, home schooling and managing our own physical and mental health.

These professional and personal challenges continue to evolve, both in the context of the Covid second wave and the need to restore service provision. We are working hard to get primary community and secondary care back on track, in collaboration with our colleagues across mental health, social services and the third sector. We are balancing this challenge with need to cope with the second wave of the pandemic. A challenge further complicated by the impact of social isolation, delays in planned care and the potential impact of post-Covid symptoms on MSK health.  The impact of Covid-19 has been massive and whilst we need to continue to rapidly adapt to meet these daunting challenges ahead, we also need to continue to look after our own wellbeing, and it is timely to reflect on Brendan’s message regarding the importance of physical activity to maintain our own mental health as well as that of our patients.

I am ever an optimist, and out of this massive challenge comes opportunity. Adaptive innovations in care have been rapidly implemented, particularly with regard to virtual provision. We have looked to capture examples of such innovations and share the principles underpinning these new ways of working though our #NHSChangeChallenge project. The objective is to help support local leads to make best use of resources to be as productive as possible. This all needs to continue to be focused around a collective vision of enabling lifelong best MSK health across all communities, and delivering evidence-informed, personalised high quality care of value for all. Moreover, quoting Sue’s excellent recent blog, ‘if it doesn’t work for patients then it doesn’t work’, I believe key to achieving this vision and aim in this challenging time is collaborating with those with lived experience to co-produce our strategy moving forward.

So as our rollercoaster ride continues, I would like to thank the MSK community for your support and efforts both over the last year and moving forward, with confidence that together we can rise to the challenges ahead and build on our innovations to inform future service transformation to support best MSK health.

Twitter @andypbennett79

Blog for #BoneJointWeek from Nuzhat Ali, National Lead for Musculoskeletal Health for Public Health England.

Every October, Bone and Joint Week helps get people thinking about one of the most widespread and pressing health issues of our times – musculoskeletal (MSK) health.

Good MSK health is when muscles, bones and joints are working together to carry out daily functions and activities with ease and without pain or discomfort.   

The coronavirus pandemic has changed the way many of us think about our health and wellbeing, especially how we achieve good MSK health. People’s work has been significantly affected, with many of us working from home on makeshift desks and/or lap-tops balanced on our knees, leading to muscular pain and fatigue. Add in stress, anxiety, lack of regular physical activity and weight-gain and we are at risk of poorer MSK health.

There are some early indications that the MSK health of the population may have deteriorated as long-term conditions are harder to manage and people become less active while working from home or whilst on furlough. A healthy workforce supports a healthy economy and as one of the leading causes of absence from work, MSK health is vital.

One in four people have an MSK condition like back and neck pain, and arthritis in the UK, and half of those people live with pain every single day. Intelligence from Versus Arthritis, patient helpline and surveys, indicates that the experience of self-shielding and social distancing during lockdown has had negative impacts on the health and condition of people with arthritis, with anxiety and reduced physical activity causing symptoms to flare.

We know from research that if an acute MSK condition, such as a back, neck or repetitive strain injury is not managed well, this can increase the risk of re-occurrence and potentially become a chronic problem.  

Organisations need to be encouraging and support staff equipment requests, where the need is identified. There are some good resources here:

https://www.csp.org.uk/public-patient/keeping-active-healthy/staying-healthy-work

https://www.hse.gov.uk/toolbox/workers/home.htm

To reach our goal of more years of life in good health, free from disability, pain and inequality, now, more than ever, we need to support good MSK health. To get back on track, people need support to help them manage their own MSK health. Ways to help us maintain our health include early intervention and/or treatment, to move more and exercise where possible, take a daily dose of 10 micrograms of vitamin D and look after our mental wellbeing.

Calls to action: See the resources for what can help. Because good musculoskeletal health is now more important than ever.

 

Better communications with symptomatic hypermobility patients leads to better outcomes

By Jane Green – advocate ex Assist. Headteacher, BSc (HONS) Psych., PGCE QTS, Adv.Dip.Ed.(CD), MA Ed. (Leadership and Management), Social Care Institute for Excellence Trustee and on the co-production steering board for four years

For anyone on the long journey to diagnosis of Ehlers-Danlos syndromes (EDS) (previously Joint Hypermobility syndrome (JHS)) or the closely related Hypermobility Spectrum Disorders (HSD), the knowledge, practice and understanding of appropriate musculoskeletal issues from practitioners is hugely beneficial.

EDS and HSD are complex heritable disorders which affect the connective tissue found throughout the body. It can present differently in each patient, ranging from asymptomatic to severe disability. There are criteria for diagnosis, but is essential practitioners understand that the flexibility and flare of symptoms that can ‘appear out of the blue’. When patients have no explanation it can lead to confusion and anxiety. While practitioners hopefully are aware of EDS/HSD, the key area for us has been belief that what we’re experiencing is real. My journey with MSK Sussex has been the same.

I think I have always been in pain but thought everyone felt the same as I did. Even though all were surprised when I used to dislocate joints, I felt my concerns were dismissed and I was made to feel that I was making a fuss.  I thought my other non-musculoskeletal issues associated with hypermobility syndromes were also ‘normal’ so pain of various sorts, gastrointestinal, sugar rushes, dizziness, headaches and skin issues were my ‘normal’.

My musculoskeletal issues were sprains, dislocations, subluxations, dislocation of tendons, metatarsalgia, plantar fasciitis, crepitus, patellofemoral pain, PTF pain, tendonitis, trochanter bursitis , ITBS, ruptured tendons, herniated discs, sacro-iliac pain but also muscle spasms, femoral acetabular impingement, rigidity, arthritis, spondylitis and tibial plateau injuries. It doesn’t get better with age! When I was younger I loved sports and dancing but it wasn’t until pregnancy that I started really deteriorating. After having my children my issues increased.

As a professional national educationalist, speaker and Assistant Headteacher, I was passionate about my career but it took all my energy; after each working day I would be in so much pain and fatigue. I also looked after my children with special needs. I was once asked what hobbies I had to take my mind off pain and I remember saying “rest”. As I had no preceding trauma before these injuries I was often not believed and told that they were psychosomatic.

EDS logoI took early ill-health retirement in 2015 and only then received my diagnoses of EDS3 now hypermobility EDS, (hEDS) and autism. Unfortunately I was very ill with hEDs issues and persistent and acute pain. I volunteered for Ehlers-Danlos.org and was asked to speak at the ARMA Pain conference in 2017. All I remember was that my left ‘good knee’ would not stay in place, even when sitting down and I would have to constantly stop talking and click it back in with huge clunk although it did add ‘weight’ to my talk I suppose!

My right leg became so painful year after year that I dreamt of cutting it off. I had so many issues that an enthusiastic primary practitioner said I would be the first person in the practice to have replacement knees, hips and shoulders plus fused ankles, her first nearly bionic patient! A cheerful surgeon also offered to break my right leg in three. I obviously didn’t particularly want this especially as a full-time carer and so we continued trying to refer to the MSK department. It was very unclear how to see a rheumatologist. At one point this process broke down and I felt ignored. In the end I issued a formal complaint. Now you might think this is not good; in fact, it is, as I was treated fairly. Complaints can allow for learning from mistakes in good practice.

SEDS logoIt’s also important for patients to at least feel engaged particularly in such a very neglected area of EDS/HSD for those with or without a diagnosis as there is no defined care pathway for hEDS HSD. This is especially important because of the potential differential diagnoses such as fibromyalgia, arthritis and CFS/ME. Improved communication and systems process can lead to better patient outcomes and less potential for PTSD to develop.

RCGP logoIn 2018, I founded a local hypermobility support group, SussexEDS to improve communication and provide local active support for members with symptomatic hypermobility and family members. This involved advocating with health linking guidance to local and national EDS and Hypermobility charities and the RCGP EDS Toolkit on the MSK Sussex website. We are also planning exciting webinars with the lead of the MSK service talking and taking questions from joint members. This in turn builds not only awareness of what MSK does but also builds trust. This is a rung on the ladder of co-production where informing to engagement sits and we are very hopeful to build on this for the future in the most effective way.

by Victoria Wells, a personal reflection about a new play with a theme of dancing for health – how a work of theatrical art relates to my experience of joint replacement surgery, pre-operative rehab, post-op rehabilitation and a lifetime of dancing.

On 3 October 2020, a play by Fiona Hamilton will be screened for the first time.
My experience contributed to one of its main characters.

As a child I enjoyed dancing and getting lost in the rhythm. I was born with hip dysplasia that was not diagnosed until mid-childhood and, as a result, I walked with constant pain. There was no treatment pathway until I was thirty seven. Physiotherapists patched me up but fatigue and inflammation got hold of my soft tissue.

Sadly, there is still no pathway for adults who have hip dysplasia. It is a matter of luck whether a patient finds a surgeon or GP who understands the impact of the condition or a physiotherapist trained in adult hip dysplasia.

In 2005, I attended a lecture by Professors Ian Learmonth and Tony Miles, where I discovered that having a joint replacement in my late 30s might be an option. I became involved in patient and public involvement in musculoskeletal research at the University of Bristol’s 2009-17, and The Chronic Pain Policy Coalition 2006; more recently, I became a lay member of NICE, working with a multidisciplinary committee on their Joint Replacement Guidelines 2020.

I danced my way through my hip revision, from pre-hab to post-hab. Dancing helped me deal with post-op pain. For me it was a form of pain relief and it motivated me to move without consciously knowing I was exercising. I knew moving to even one song was better than not moving at all.

dance posterBy chance, I met the writer Fiona Hamilton in a pub on New Year’s Day 2019. Amongst other things we found ourselves chatting about using the arts therapeutically, a field she specialises in, particularly creative writing. As an artist, I use colour, drawing and dancing. I told her how I had made drawings on postcards expressing the daily pain I experienced while waiting for hip revision surgery.

Our conversations unfolded over ensuing months. A year later, Fiona had written Dancing on the Rusty Brown Carpet drawing on some of my experiences. Like me, one of the main characters, Gemma, has a playlist of carefully chosen tracks that help her walk into the operating theatre. Gemma asks the music to be played during the operation, just as I did during my third operation in my late forties when I was scared of complications recurring.

Here’s the blurb for the play:

Gemma and Alex experience pain of different kinds. She’s listening. He’s staying silent. He collects data, she dances. A play about the power of body and mind to speak to each other across a carpet or a moonscape, and how transformation comes when we are able to move to different rhythms.

For me though, dancing is more than just physically “moving around”. And so, when Gemma encounters a young researcher, Alex, she refuses to be ‘made into data’, and insists that he learns the sensations and feelings involved in bodily experience, starting with how it feels to crawl around on the floor. Their relationship develops as he slowly reveals his own experience of mental struggles, opening up themes of mind and body and how they interact.

Music and humour pepper the play, and by the end the audience is quite likely to be dancing themselves.

Dancing on the Rusty Brown Carpet is a play adapted for a live Zoom audience. It lasts 1 hour 15 minutes and will include an optional discussion afterwards. A limited number of tickets are available online here: https://dancing-carpet.eventbrite.co.uk  – book soon to avoid disappointment.

A proportion of ticket sales will go to ARMA to support its vital work in the field of musculoskeletal health.

I believe passionately in the work of ARMA in representing patient, public and clinical perspectives, to provide research impact on guidelines and policy. It is inspiring to see what ARMA does to promote charities working together to improve musculoskeletal health for all.

Saturday 3 OCTOBER 19.00 BST (7pm)
AND Sunday 4 OCTOBER 16.00 BST (4pm)
Ticket holders will receive a zoom link two days before the performance.

Power to the people: Coproducing the National Musculoskeletal Strategy

JOIN THE TWEETCHAT ‘Power to the people’ – Coproducing MSK 21 Sept 2020, 7-8pm #MSKCoPro

This guest blog was coproduced by :-
Mark Agathangelou, Lived Experience Group member;
Aimee Robson, Head of Personalised Care (Clinical, Workforce & Quality);
Andrew Bennett, National Clinical Director MSK conditions;
Cristina Serrao, Lived Experience Ambassador;
and Helen Lee, Experience of Care Professional Lead.

In this blog, Musculoskeletal (MSK) leads within NHS England and Improvement and people with lived experience consider why coproduction is the golden thread of achieving the highest quality care that is valued by all.

Our vision is to enable lifelong MSK health within all communities through the delivery of evidence-informed, personalised and high-quality healthcare which is of value to all.

We often focus on economic value, striving to maximise the use of our constrained resources to deliver the highest quality of provision. But whilst this remains a significant consideration, we also need to focus on the social value of our provision, especially given that we are responding to a pandemic which has impacted the lives of everyone.

Coproduction means that all involved feel engaged in a collaborative healthcare approach with a shared commitment to quality, where everyone is treated with respect and dignity and everyone feels that their needs matter. To attain this, it is essential that patients and members of the public are engaged in all aspects of MSK healthcare through a co-productive approach to planning, delivering and improving services; and this is what we are striving to do.

The NHS has a duty to continuously improve quality, encompassing effectiveness, experience and safety, and a parallel duty to involve patients, carers and the public in planning and changing services (NHS Constitution 1). A CQC report in 2018 identified that putting the patient at the centre of quality improvement (QI) sharpened the focus on delivering high-quality patient care, and to deliver this, patients must be involved and enabled as true and equal partners 2. Yet, organisations often assume this is difficult to do and that it often takes a long time 8.

We know that when people are given choice, control and are empowered through personalised care, that this improves outcomes and wellbeing, reduces health inequalities and enhances the experience of care 3,4,5,6. This is why the “what matters to me” approach of the Universal Comprehensive Model of Personalised Care 7 is one of the fundamental changes and is a core part of the NHS Long Term Plan and even more important now.

During the pandemic, we exercised this approach in practice. Mark Agathangelou explains what being a Lived Experience Member of the MSK Lived Experience Group means:

“I came to the Group through lived experience of a chronic MSK condition (persistent pain), being active as a patient organiser (for a chronic pain self-help support group) and engaging as a patient partner with my local NHS.

Preliminary conversations with Group organisers reassured me that this would be a genuine forum for coproduction, working in a spirit of equality. On joining, I was impressed by the informal, friendly atmosphere and by the readiness to hear from everybody in the Group, irrespective of their background; to have a genuine exchange. I didn’t detect any sense of hierarchy of speaker or in the weight attached to contributions. There is a good representation of people with lived experiences, from organisations representing the patient voice and an awareness of the need to ensure proper diversity in the group.

Tough questions are addressed, such as the perennial one of whether this body has a real say in policy development? In the first instance I would say that this inclusive tone of meetings is persuasive; a lived experience of good practice. Further, the NHS members are clearly genuinely committed and sincere in their conviction that coproduction needs to be at the heart of the process.

We already have an example of co-produced output: the work done on some existing feedback from patients, carers and the voluntary sector. The Group was asked to convert this into a form that could be more impactful. Patients and stakeholders successfully worked with the Lived Experience Ambassador to produce a short essential summary of the document.

But arguably the real proof of the pudding is that this temporary body, designed to capture the lessons of COVID-19, is being developed into a standing Lived Experience Group, intended to be at the heart of the MSK decision-making process for NHS England and Improvement.

This is still a relatively new group and it is transforming itself into an even newer form. So, it is too early to say if it will succeed in this objective. But the signs are promising and it’s a fascinating journey which I feel privileged to be part of.”

Cristina Serrao, Lived Experience Ambassador, is also playing a lead role in this work:

“The beauty of the work we describe has been that there are no hidden agendas; these are for all to see. This is a level of transparency I haven’t witnessed before. Maybe the urgency of dealing with a pandemic led to the stripping of perceived hierarchy through titles and position?

After all, baring your lived experience means leaving yourself exposed to vulnerability, and the impact of COVID-19 has hit us all – we have lived that feeling of vulnerability and uncertainty together.

Finally, we have that level playing field. Now we need to embed this way of working as the new normal.”

To deliver the vision described, we must coproduce MSK services with people with relevant lived experience as patients, service users or their carers based upon “what matters to me” for people and populations, which are the tangible evidence-based components of the Universal Comprehensive Model of Personalised Care.

So, what next? We call you to action by inviting you to participate further in this important discussion.

TWEETCHAT Power to the people – Coproducing MSK 21 Sept 2020, 7-8pm #MSKCoPro

Join @WeAreARMA and the #MSKLeg members for a TweetChat all things #MSK in these #COVID times.

References:

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