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Health Policy

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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Landmark parliamentary debate highlights the NASS campaign for faster diagnosis time for thousands of people with axial (SpA)

On 17 September, a parliamentary debate on axial SpA (AS) was a landmark moment in the campaign to reduce diagnosis times and improve the care for thousands of people living with axial SpA (AS).

The debate was led by Tom Randall MP, who lives with axial SpA (AS) and shared with the House his personal experience of a delay to diagnosis, including being passed from one health care professional to another, before finally receiving the correct diagnosis.

During the debate, Tom Randall MP asked for three commitments from Minister for Care, Helen Whatley, to help reduce the delay to diagnosis from 8.5 years to just one. In response, the Minister agreed to meet with Tom Randall and NASS.

Commenting on the debate, Dr Dale Webb, CEO of NASS said:

“We will now be working with Tom Randall MP and other members of the All-Party Parliamentary Group (APPG) for Axial Spondyloarthritis to keep up political pressure to reduce delays in diagnosis and improve care for people living with axial SpA (AS).

“We would particularly welcome the opportunity to meet with Minister for Care, Helen Whatley, to discuss the governments ongoing commitment to supporting a better deal for thousands of people living with chronic pain.”

Anyone who missed the debate can watch it via www.parliamentlive.tv (select 17.01 from the index in the sidebar).

The NHS Change Challenge used crowdsourcing to identify almost 200 initiatives introduced during lockdown which proved beneficial. The project is now working to write these up in more detail so that we can publish them back onto the site for further comments and discussion. Due to the overwhelming responses received, the focus initially is on writing up the highest-scoring ideas based on impact and feasibility within each challenge area. 

The first two ideas have been published on the site. Keep checking for further ideas which will be published over the next few weeks.

Consultation deadline 14 September 2020

A new draft guideline, Chronic pain in over 16s: assessment and management, published by the National Institute of Health and Care Excellence (NICE) is open for consultation until 14 September 2020.

The consultation recommends that people over 16 should not be offered medication to manage chronic primary pain, including opioids, non-steroidal anti-inflammatory drugs, benzodiazepines, local anaesthetic/corticosteroid combinations, paracetamol, ketamine and corticosteroids.

The draft guidance recommends the non-pharmacological management of chronic primary pain, including supervised exercise programmes and psychological therapies.

Several ARMA members are planning to respond to the consultation.

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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by Greta McLachlan, Fellow at the Strategic planning and development cell, NHS England and Improvement, part of the Change Challenge Collaborative.

The change challenge collaborative is a group of professionals who have come together to work across the MSK, orthopaedic and rheumatology specialties to try and capture beneficial changes that have occurred within the NHS during COVID- 19. The aim being to try and capture these changes and ideas to ensure that these innovations are not lost when the NHS comes out of its pandemic measures.

Healthcare provision and delivery has changed greatly during COVID-19. Some changes have been detrimental to patients but not all. In fact there has been a whole host of innovations and different ways of delivering care across the NHS that have occurred in several weeks rather than the usual NHS pace of years.

We asked the communities of MSK, rheumatology and orthopaedics to tell us about the changes they had seen or instigated on a platform called Crowdicity.

Crowdicity is an online platform that allows collaboration of ideas and engagement through comments and discussion around each post. It was the ideal platform for us as it had been previously been used by NHS Horizons, but allowed our project to reach far further than a few emails for feedback might do.

In total over the four weeks that the platform was open for submissions, we had over 180 change ideas posted to the website, over 400 users registered, over 800 comments and some 10,000 plus page views. Our hashtag #nhschangechallenge got over 3 million impressions on twitter.

Once all submissions were closed, each change idea was discussed for its impact and feasibility and was assigned ‘themes’ so that we could see what commonalities there were between change ideas. The discussion that took place around each change idea took a co-productive, collaborative approach. For example, the group that discussed the rheumatology change ideas was made up of two consultant rheumatologists, one consultant physiotherapist, a patient with lived experience of MSK, a chair and secretary. The impact and feasibility were based on the premise that whilst some change ideas might be great during a pandemic and for a short period of time, they may not be feasible on a national scale or with the long term picture in mind. The same for impact. We wanted to be able to identify changes that would have greatest impact across the NHS, not just changes that have helped a small niche of patients or clinicians.

Now comes the hard part of this journey. Taking these change ideas forward and trying to work out how to champion them to the wider communities. ARMA has been a great supporter of this work, and helped us get to this point and I know will help us continue to make this project such a unique one as we look to next stage of this collaborative process. ​

A new COVID-19 rapid guideline: arranging planned care in hospitals and diagnostic services NICE guideline [NG179] has been released by NICE. The publication makes recommendations for how these services should be organised to balance the risks associated with covid-19 and the potential harms that could arise from delays in elective treatment and diagnostic procedures.

The guidance states that people having planned care involving any form of anaesthesia and sedation should follow social distancing and hand hygiene measures for 14 days prior to admission – a change from 14 days of self-isolation. For elective surgery, patients need to take a covid-19 test three days before surgery, and self-isolate for three days prior to surgery.

 

report coverThe report emergent from Baroness Cumberlege and the Independent Medicines and Medical Devices Safety review was published in early July and has been welcomed by the British Orthopaedic Association. This comprehensive review has demonstrated the impact on the physical and mental health of patients when implants fail. The review shows that there is a clear need for detailed surveillance of implants, and we welcome the recommendation for the establishment of more National Implant Registries.

Read the BOA’s full position on this issue.

The BOA also continues to update their website with information for both patients and health professionals regarding COVID and its impact on trauma and orthopaedics. This information specifically for patients can be found on the FAQs for Patients page, and wider information is available via the Information for BOA Members page.