The impact of COVID-19 and the future of care for people with a muscle-wasting condition - SHINING A LIGHT
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SHINING A LIGHT
The impact of COVID-19 and the
future of care for people with a
muscle-wasting condition
www.musculardystrophyuk.org
Registered Charity No. 205395 and Registered Scottish Charity No. SC039445SHINING A LIGHT – THE IMPACT OF COVID-19
Table of contents
Introduction...............................................................................................................................................................................................................3
Executive summary...............................................................................................................................................................................................5
Priorities and recommendations at a glance......................................................................................................................................5
Methodology.............................................................................................................................................................................................................7
Key findings................................................................................................................................................................................................................8
Analysis..........................................................................................................................................................................................................................10
Priorities and recommendations.................................................................................................................................................................13
Mapping our priorities........................................................................................................................................................................................20
Conclusion...................................................................................................................................................................................................................25
About Muscular Dystrophy UK and muscle-wasting conditions.........................................................................................27
Get involved...............................................................................................................................................................................................................27
2SHINING A LIGHT – THE IMPACT OF COVID-19
Muscle Group meetings, Regional Neuromuscular
Introduction Networks and through our Muscles Matter
2021 virtual seminar series. We discovered that
In March 2020, the United Kingdom entered a new COVID-19 not only presented new challenges to
world of lockdowns and social distancing because people living with muscle-wasting conditions and
of the COVID-19 pandemic. the services they rely on, but it also exacerbated
existing ones.
In the early stages of the pandemic, emails and
calls to the MDUK helpline rose by 35 per cent1 We are now seeing for the first time expensive,
and, for the rest of 2020 and into 2021, 13 percent transformative medicines and treatments coming
of all requests we received for support related to on to the market2, national and international
COVID-19. Most related to two fundamental areas standards of care for people with a muscle-wasting
of concern. The pandemic had curtailed access condition3, the emergence of organised but
to support from a multi-disciplinary team (MDT) unfunded national and regional neuromuscular
of health and care specialists, and to the support clinical networks4, and a significant increase in
networks, including family and friends, that people the number of people living well into adulthood
with muscle-wasting conditions need to deal and requiring support from a multi-disciplinary
with the huge impact of living with a condition. neuromuscular service5. All of these huge
There was also widespread concern about the developments continue to take place in the
level of risk that COVID-19 represented for people treatment and care of people living with muscle-
living with muscle-wasting conditions – anyone wasting conditions, improving quality of life and
with a muscle-wasting condition became classed in many cases extending lives. But yet it is often
as ‘clinically vulnerable’ or ‘clinically extremely still difficult to get access to these services and
vulnerable’. support.
Throughout the pandemic, we have worked The good news is that the UK Government and
closely with a wide range of health professionals, the NHS have expressed a desire to learn from
volunteers, charities, and individuals to help the pandemic to improve overall healthcare
provide accurate information and advice to provision6,7. With NHS reforms8 underway to
support our community. We also began building integrate healthcare and work ongoing to build
a picture of the impact that COVID-19 was having action plans for the delivery of the UK Rare
on the people we support and the services they Diseases Framework9, there is an opportunity to
rely upon. In early 2021, we decided to solidify this address some of these longstanding challenges,
picture by surveying both neuromuscular services while also navigating the immediate needs of
and people living with muscle-wasting conditions, people living with muscle-wasting conditions that
as well as holding discussions at our regional COVID-19 has created.
1
451 phone calls and emails received in February and March and April 2020 vs. 333 received in January and February.
2
Muscular Dystrophy UK, Fast track – fast access to specialist treatments: https://www.musculardystrophyuk.org/campaign-for-independent-living/fast-track/
3
Birnkrant et al, Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal
and nutritional management, The Lancet, 2018: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30024-3/references
4
Muscular Dystrophy UK, Regional neuromuscular forums and clinical networks: https://www.musculardystrophyuk.org/campaign-for-independent-living/health-
care-campaigns/personal-support/regional-neuromuscular-forums/
5
Muscular Dystrophy UK, Improving standards of care and facilitating clinical trials for spinal muscular atrophy: https://www.musculardystrophyuk.org/grants/im-
proving-standards-of-care-and-facilitating-clinical-trials-for-spinal-muscular-atrophy/
6
UK Government, COVID-19 mental health and wellbeing recovery action plan, April 2021: https://www.gov.uk/government/publications/covid-19-mental-health-
and-wellbeing-recovery-action-plan/covid-19-mental-health-and-wellbeing-recovery-action-plan
7
NHS England, NHS sets out COVID-19 recovery plan for patient care and staff wellbeing, March 2021: https://www.england.nhs.uk/2021/03/nhs-sets-out-covid-19-
recovery-plan-for-patient-care-and-staff-wellbeing/
8
Department of Health and Social Care, Working together to improve health and social care for all: https://www.gov.uk/government/publications/working-together-
to-improve-health-and-social-care-for-all
9
Department of Health and Social Care, UK Rare Disease Framework, January 2021: https://www.gov.uk/government/publications/uk-rare-diseases-framework/
the-uk-rare-diseases-framework
3SHINING A LIGHT – THE IMPACT OF COVID-19
This report sets out what we found. It highlights ‘The outside world is out of reach and personal
key recovery priorities in the wake of the COVID-19 confidence and independence have diminished.’
pandemic and the pressures on services; outlines On experience of pandemic
key priorities to improve long-term outcomes
for people with muscle-wasting conditions; and ‘I am not going to the office every day, travelling
makes recommendations and outlines actions on the bus, opening doors, lifting and carrying
needed within five years to improve outcomes for items, transferring to the toilet at work. I cannot
people living with muscle-wasting conditions. go swimming or have physio or massage. Instead
at home what I do is more limited and I have
Muscular Dystrophy UK is hugely grateful to the noticed in particular that my arm strength has
hundreds of people living with muscle-wasting deteriorated. I can no longer raise my arms to stir
conditions and to the neuromuscular health while cooking, for instance, or turn and flush the
professionals who have contributed to this toilet. I have to ask for help with drinking, in more
report via surveys and discussions. We’ve made situations. I am experiencing increasing pain and
recommendations for a wide range of stakeholders, sometimes have to go lie down in the afternoon
and we urge you to work with Muscular Dystrophy because of this.’
UK to understand more about the role you can play On experience of pandemic
in making our recommendations become reality –
and how we stand ready to work in partnership with Health professionals told us:
you to make that happen.
‘My first priority is staffing - we are seriously
People with muscle-wasting conditions told us: undermanned in our neuromuscular service –
and my second priority is making psychology/
‘Due to lack of exercise my leg muscles are not neuropsychology services accessible to
as good. I am pushing my wheelchair 2 to 3 neuromuscular patients. My third priority would
miles a day when the weather is suitable but this be physio accessibility.’
does not help my lower body. I worry about the On future of neuromuscular services post-
damage done and about interrupted access to COVID-19
swimming pools in the future.’
On impact of shielding ‘We need to prioritise offering a high standard of
care, whether appointments are conducted face
‘I’m unable to swim and therefore more to face, via video or telephone with input from
unstable on my legs and falling more often. The the MDT. We also need to ensure that disease
government advises to go out for a daily walk. modifying treatments are restarted smoothly
Sadly, I’m not able to do that.’ and without delay.’
On impact of shielding On future of neuromuscular services post-
COVID-19
‘The pandemic has highlighted the fact that
I get very little support from my GP or the
health service and any assistance regarding my
condition. I have to find and finance privately.’
On experience of pandemic
‘I just feel so alone, and I am living in fear. Wish I
was able bodied and could rely on myself.’
On experience of pandemic
4SHINING A LIGHT – THE IMPACT OF COVID-19
2. Reduce waiting lists, address the growing
Executive summary backlog of new and follow-up appointments.
3. Open face-to-face appointments to people
“We’ve lost nearly all of our regular hospital for whose wellbeing it is essential and
input and accessing appointments. We haven’t retain effective digital technology for virtual
been able to physically attend appointments appointments for clinicians and patients who
and normally we’d have regular cardiology agree to this approach.
and respiratory appointments, but these were 4. Secure the confidence of people living with a
all put on hold. We’re still chasing results from muscle-wasting condition and make sure they
appointments that took place more than know that if they are called into a face-to-face
six months ago. I feel scared that it feels like appointment, that it will be a safe space.
nobody’s really monitoring what’s going on with 5. Improve staff support to ensure retention,
us. There are massive inequalities to accessing provide upskilling, and avoid burnout.
healthcare when you have a disability and
COVID-19 has shone a magnifying lens on this. Key priorities to improve the long-
term outcomes for people with a
“Even before the pandemic we had a sense that muscle-wasting condition
provision was shrinking dramatically in terms of
a specialist and co-ordinated approach to our 1. Equitable access to a specialist neuromuscular
care. The pandemic has massively exacerbated MDTs (a core team of specialist consultants,
and accelerated this originally-existing problem, physiotherapists, mental health professionals,
especially in relation to occupational therapy neuromuscular care advisors) across the UK.
and accessing equipment. 2. The establishment of NHS-managed
neuromuscular clinical networks across the
“We’re not at the end-of-life stage and still have UK, to help raise standards and benchmark
plenty of living to do but we’re also not fixable services, as well as improve links with and the
either. There urgently needs to be a more holistic education of health professionals working in the
approach to services that span both health and community.
social care.” 3. The provision of neuromuscular outreach
Charlotte and Tom Hardwick from the East clinics and improved connection with
Midlands, who both live with a muscle-wasting community services.
condition 4. Equitable access to a psychologist or mental
health specialist with expertise in working with
Priorities and people with a muscle-wasting condition.
5. Faster access to new treatments and therapies,
recommendations at from NICE assessment to patient roll-out.
6. Strengthened administrative support for data
a glance collection and improved clinic co-ordination.
Key recovery priorities in the wake of
the COVID-19 pandemic and pressures
on hospitals
1. Ensure faster access to diagnostics and
investigations.
5SHINING A LIGHT – THE IMPACT OF COVID-19
Recommendations and next steps
to be completed within five years to
improve outcomes for people living
with a muscle-wasting condition
1. A banded national payment system to be
established that reflects the cost of specialist
MDT care for people living with a muscle-
wasting condition.
2. The implementation of a clear commissioning
pathway to all recognised NHS England and
devolved nation neuromuscular specialist
services.
3. The development of and implementation of
NHS England national neuromuscular service
specifications for specialist care of children and
adults.
4. National Institute for Health and Clinical
Excellence (NICE) and the Government to fast-
track the roll-out of the Innovative Medicines
Fund so that no person waits longer than
necessary to access new treatments.
5. The establishment of NHS-managed regional
neuromuscular clinical networks across the UK.
6. Review already existing NHS databases of
people living with a muscle-wasting condition
to ensure they are fit for purpose and are
administered well.
‘Patients with neuromuscular diseases
(NMDs) require long–term multi-disciplinary
care. In England, this care should be co-
ordinated by specialist neuromuscular services
that are commissioned at a specialised
or highly specialised level. These centres
provide diagnostic investigations, symptom
management, treatment (when available)
and multi-disciplinary care. Such centres also
play an important role in the development of
translational research. As a result, people with
NMDs may experience an improvement in
quality of life, prolonged life expectancy and
receive advice on adaptations to help them carry
out everyday tasks made harder by physical
limitations.’
Clinician from a leading national neuromuscular
service
6SHINING A LIGHT – THE IMPACT OF COVID-19
presents a strong and clear narrative of what people
Methodology have lived through and, indeed, what needs to
happen in the future.
We have based this report on the results of two
national surveys we conducted in the first half ‘I feel very fearful that if I get ill, I can’t go to
of 2021. The first survey looked at the impact of hospital as people don’t understand I need to take
COVID-19 and shielding for people living with a regular carers/husband with me. It is still not clear
muscle-wasting condition, as well as their families, they would let anyone in with me. Also concerned
between March 2020 and February 2021. Over my cardiac care has been absent and respiratory
400 people responded, providing insight into the care. If I cannot travel to these far away hospitals,
impact of shielding and disruption to vital clinical I need some kind of replacement. I still feel travel
appointments. We also heard of concerns arising is not safe into London. My specialist dental care
because of the pandemic, such as receiving physical in London was stopped and I was removed as a
and mental wellbeing support. patient due to COVID. I have no routine dental
care now which I badly need as the local hospital
The second survey looked at the impact of is struggling to provide it for practical access/
delivering specialist neuromuscular care during expertise reasons. I feel I’ve lost all medical care
lockdown and through the pandemic from a basically.’
clinical perspective, between March 2020 and Feedback from a person living with a muscle-
February 2021. We received responses from 32 wasting condition on concerns for the future.
neuromuscular clinical teams (over 50 percent of
neuromuscular services in the UK), providing insight ‘The impact of COVID on our service has been
into staff redeployment and service gaps, impact devastating. Our in-patient ward respiratory
on clinics, appointments and treatments, and the and cardiac consultants, physios and nurses
use of virtual consultations for people with muscle- were redeployed during the first wave. Our team
wasting conditions. have returned, and we are now housed on a
temporary ward. We have been undertaking
Muscular Dystrophy UK co-ordinates and partakes remote appointments (telephone and video) and
in nine regional and national neuromuscular we have a huge backlog of patients to see, but
clinical networks across the UK, which aim patients are still reluctant to come to hospital
to improve neuromuscular care and services because they are fearful of catching COVID,
standards across regions, by bringing together despite vaccination. Many are asking to have
specialist clinicians, people living with a muscle- their antibody levels checked.
wasting condition and NHS decision-makers.
We discussed the survey findings and the issues ‘Remote and video consultations are OK in the
uncovered within these networks, as well as at short term, but not in the long term and we are
both All Party Parliamentary Group and Cross- at a point in time now where we are starting to
Party Group meetings in all four UK parliaments see people face to face in clinic. One difficulty,
and assemblies. We also discussed this work at our however, is that fewer people can come to
2021 virtual national conference for neuromuscular outpatients or the ward on any particular day, to
care advisors and specialist nurses. maintain social distancing.’
Clinician feedback on post-pandemic concerns.
At the heart of this report are the voices of people
living with a muscle-wasting condition and the
specialist health professionals charged with co-
ordinating their multi-disciplinary care. The report
7SHINING A LIGHT – THE IMPACT OF COVID-19
Cancellation of specialist and
Key findings diagnostic appointments
Impact of shielding Between March 2020 and February 2021, our
findings showed the impact of the COVID-19
Of people with muscle-wasting conditions pandemic on neuromuscular centres:
who responded:
• 97 percent had to cancel routine face-to-face
• 86 percent shielded during the pandemic, neuromuscular clinics.
regardless of whether they received a letter • 38 percent had to cancel new face-to-face
instructing them to do so or not. diagnosis appointments.
• 68 percent said that lockdown and shielding • 64 percent had to cancel appointments for
had a negative impact on their physical health. diagnostic investigations such as muscle biopsy,
• 62 percent said that lockdown and shielding MRI, EMG.
had a negative impact on their mental health. • 48 percent saw a reduction in the number of
• 45 percent experienced reduced access to new referrals in comparison to a more normal
family carers or care workers because of year.
lockdown or shielding. • 63 percent saw an increase in waiting times for
face-to-face neuromuscular MDT appointments.
Disruption to accessing healthcare • 72 percent experienced delays in DNA analysis
services because of the COVID-19 required for diagnosis.
pandemic • 63 percent experienced delays in getting
cardiac scans (ECHOs).
Of people with muscle-wasting conditions • 63 percent had to pause clinical trials or other
who responded: research studies.
• 75 percent experienced disruption or Virtual consultations
delays to accessing specialist muscle clinical
appointments. • 94 percent of respondents said that, overall,
• 40 percent said their access to specialist holding telephone and video consultations
respiratory care had been affected, disrupted, or during the COVID-19 pandemic had been
delayed. successful
• 54 percent said that access to specialist • 60 percent of respondents had concerns about
neuromuscular physiotherapy had been the vaccine programme, particularly around
affected, delayed, or disrupted. vaccine safety for people with a muscle-wasting
condition, and prioritisation for them, their
Impact on staffing at neuromuscular carers, care workers and personal assistants.
centres:
Our findings indicate that people living with
• 64% of neuromuscular specialist teams have muscle-wasting conditions have struggled to
had members of their MDT redeployed since access critical services such as specialist muscle
the start of the COVID-19 pandemic. clinical appointments, specialist respiratory care
and specialist neuromuscular physiotherapy
because of the pandemic and shielding. This lack
of provision has had a negative impact on their
overall physical and mental wellbeing. As a result,
8SHINING A LIGHT – THE IMPACT OF COVID-19
an ever-increasing backlog of patients is waiting
for appointments. Considering the pandemic is
still ongoing, these findings offer only a glimpse of
these experiences, and the issues will worsen until
properly addressed.
In many cases, the delay in access to specialist
services may result in a more acute progression
of a person’s condition. This could lead to the
need for additional treatments and longer stays
in hospital, in turn putting even more pressure on
an already strained service. This is evident as our
surveys indicated a significant number of cancelled
diagnostic appointments, a reduction in specialist
clinic referrals, and increased waiting times for
face-to-face appointments. It’s clear there needs
to be a combination of virtual and face-to-face
appointments, depending on individual patient
need and preference. There needs to be sufficient
numbers of neuromuscular staff to address these
problems; those who were not seconded during
the pandemic would have been stretched even
further to deliver appropriate services, and the
many who were seconded are already at risk of
burning out.
These findings reflect a worsening situation for
people living with muscle-wasting conditions.
Most respondents emphasised that delayed access
to muscle clinics, physiotherapy and hydrotherapy
would result in irreversible muscle weakness
and muscle loss. We believe that all people living
with muscle-wasting conditions should be able
to access MDTs, diagnostics, and clinical services
when they need them, no matter where they live
in the UK.
9SHINING A LIGHT – THE IMPACT OF COVID-19
because they’ve been shielding, and so have
Analysis missed specialist diagnostic tests and treatments.
Waiting lists have been growing since March 2020
Muscle-wasting conditions are rare and complex and there is now a significant backlog. Many of
multi-system disorders that cause a wide variety these patients may require more complex care in
of symptoms. Some of these conditions are life- the future, which, as well as having a significant
limiting. As such, people with muscle-wasting impact on their wellbeing will be more costly for
conditions require consistent medical/health the NHS and require additional hospital and staff
monitoring, fast access to treatments and access resources. This is not including those still waiting
to a MDT. Even before the COVID-19 pandemic, for an initial referral to specialist muscle services.
access to these fundamental services was unequal
across the country, resulting in a postcode In order to provide high-quality care in the future,
lottery of services. The pandemic has only further it’s vital to prioritise reducing waiting times,
exacerbated these barriers to care. implementing effective digital technology, and
enabling access to full specialist MDTs and novel
With the focus shifting to recovery of NHS services, treatment. It is only then that neuromuscular
now is a critical and opportune time to examine services will be able to provide integrated care to
the current state of neuromuscular services support both the physical and mental wellbeing of
and identify the barriers to neuromuscular care people living with a muscle-wasting condition.
affected by the impact of COVID-19. This will
secure a clearer footing to implement ways to The introduction of Integrated Care Systems (ICSs)
overcome them to ensure a more resilient and may go some way to providing more joined-up
adaptive neuromuscular service in the future. neuromuscular care . The principle behind ICSs,
in theory, should erode the barriers preventing
Impact of the COVID-19 pandemic on collaboration between crucial services, such as
neuromuscular services specialised, community and social care services,
that play a vital role in neuromuscular care
When the pandemic first broke out, neuromuscular provision.
services were provided with the means to offer
virtual consultations. Clinician feedback has shown Best practice and commissioning of
that this was successful in the short term so they neuromuscular services across the UK
could monitor their patients remotely. But this
will not be an effective long-term tool as many Neuromuscular services across the UK have for
diagnostic appointments, some assessments, and years experienced variability across paediatric,
treatments can only be done in person. Clinical transition and adult clinical pathways. Such
feedback highlighted that it was impossible to variability has arisen because there is neither a
gather vital information, such as ambulatory clear NHS service specification for neuromuscular
function and muscle strength deterioration, conditions nor a clear commissioning route for
through a screen. Clinicians reiterated that a neuromuscular services.
combination approach might be appropriate in
certain circumstances for some patients, but those NHS service specifications are important to define
in more advanced stages of their condition would standards of care expected from organisations
need face-to-face appointments. providing specialised care. People living with
muscle-wasting conditions require access to a
Even when physical appointments have been range of different services and departments.
possible, many people have been unable to attend As such, they have some reference in other
10SHINING A LIGHT – THE IMPACT OF COVID-19
service specifications; but there is no joined-up Northern Ireland, the HSCB is unable to support
consensus to outline best care practice. Having a highly specialist elements of care for rare diseases
dedicated NHS England national neuromuscular locally, instead relying heavily on links with tertiary
service specification and care pathway will help and quaternary centres across the UK. As a result,
address the postcode lottery of neuromuscular neuromuscular services in Northern Ireland have
services across the country by making clear the sometimes had inconsistent standards of care
key core standards that all services should be from diagnosis onwards . There is also a significant
able to demonstrate, and which services people reduction in services when transitioning from
with muscle-wasting conditions need to be able paediatric to adult services.
access. It will also help support specialist centres
with requests for additional resources they need to In Scotland, specialised services are commissioned
reach these core standards. through the NHS Scotland National Planning
Board. The Board commissions the Scottish
However, a service specification for neuromuscular Muscle Network, which is a nationally-managed
services alone will not be enough to ensure people clinical network for children and adults living
with muscle-wasting conditions can access all with muscle-wasting conditions. The Network is
required service. Neuromuscular services across responsible for reviewing neuromuscular services
the UK also do not follow the same funding and it has put forward best practice guidelines and
pathways. In England, some neuromuscular disease-specific service specifications . Services
services are commissioned through NHS for those with muscle-wasting conditions are
England and delivered through NHS England delivered across Scotland through a collaborative,
neuroscience centres, whereas others are currently networked approach. Care is delivered as locally
commissioned through Clinical Commissioning as possible, but people still need to travel to
Groups (CCGs). This does not reflect the quality access diagnostics, specialist expertise or specialist
of care provided, with many good practice facilities.
examples available for both routes. However, it
can result in a wide variation in funding received The upcoming NHS reform in England is an
by neuromuscular services, as services across the opportunity to establish a single commissioning
country will be processed under different sections pathway for neuromuscular services for all types
of the NHS tariff set-up. of muscle-wasting conditions, as well as a specific
neuromuscular service specification. This will make
Similarly, in the devolved nations, neuromuscular it easier to implement service provision changes
services are inconsistently funded, under-developed and provide better support to people living with
to different degrees, sometimes with disjointed muscle-wasting conditions. We urge the NHS
multi-disciplinary care. In Wales, some neuromuscular and ICS leads to work together with Muscular
specialists do not have access to a full neuromuscular Dystrophy UK and neuromuscular specialists.
MDT . The Welsh Health Specialised Services Together, we want to establish a clear, linear
Committee (WHSSC) is responsible for the planning commissioning pathway that considers a calculated
of secondary and tertiary services across all seven cost of delivering neuromuscular services through
Health Boards in Wales . The two neuromuscular a payment mechanism that ensures centres are
centres in Wales: one in Cardiff and one in Swansea, reimbursed fairly for care provided.
are funded in different ways.
Implementing a service specification and clear
In Northern Ireland, commissioning decisions are commissioning route has benefited other rare
made by the Health and Social Care Board (HSCB). disease areas such as cystic fibrosis (CF). The
However, with fewer than two million people in NHS has published both adult and paediatric
11SHINING A LIGHT – THE IMPACT OF COVID-19
services specifications for CF care, based on
recommendations of the Cystic Fibrosis Trust’s
Standards of Care. Commissioning of CF services
is also calculated through a tariff reimbursement
scheme, based on UK CF Registry data. These
two areas have transformed the way CF services
are run, to ensure fair access to care, accurate
reimbursement to all specialist centres and clear
monitoring in developments of care needs.
Future plans
If adopted, our recommendations in the next
section of this report will help overcome barriers
to accessing specialist care that existed before, but
which have been exacerbated by, the COVID-19
pandemic. These recommendations will ensure
all neuromuscular services have the necessary
staffing and resources to provide high-quality care
across the UK.
12SHINING A LIGHT – THE IMPACT OF COVID-19
Priorities and The COVID-19 pandemic has exacerbated delays in
accessing diagnostic and other investigations. Our
recommendations survey showed that 72 percent of neuromuscular
centres that took part in our survey experienced
‘Building on lessons learnt to develop a wider delays in DNA analysis required for diagnosis, 63
portfolio of services and using digital platforms percent experienced delays in getting cardiac
to support multi-professional care – i.e., a scans (ECHOs) and 64 percent had to cancel
virtual meeting with hospital/local therapist appointments for diagnostic investigation such
and neuromuscular team and orthopaedics as muscle biopsy, MRI, EMG. These tests are
should improve perioperative management in essential for a conclusive diagnosis. Delays mean
those referred for possible surgery. By using a people with muscle-wasting conditions have
combination of face to face and video may allow been waiting even longer, with the uncertainty
community therapists to ‘attend’ a hospital of their diagnosis. This was further exacerbated,
appointment facilitating more ‘joined up care as 38 percent also had to cancel new face-to-face
and learning’’ diagnosis appointments because of the COVID-19
Clinical feedback on resuming services post- pandemic, at some point between March 2020 and
pandemic February 2021.
Our survey revealed a set of priorities for both A 2017 Muscular Dystrophy UK report on
people with a muscle-wasting condition and Unplanned Hospital Admissions in Patients with
specialist neuromuscular healthcare providers; Neuromuscular Diseases showed that preventable
in the short term to recover from the COVID-19 admissions for a person with a neuromuscular
pandemic and in the long-term to improve condition amounted to 1,164 bed days . These
outcomes for people with a muscle wasting numbers could have been reduced by early referral
condition. We outline these below with a set to a specialist (neurology or neuromuscular) and
of recommendations that we believe will help by preventing delays in diagnosis, as half of these
achieve these priorities. patients had not received a previous diagnosis. The
patients that received a new diagnosis at discharge
Key recovery priorities in the wake of said how important it was to get an early referral
the COVID-19 pandemic and pressures to a neurology specialist and/or neuromuscular
on hospitals specialised service for diagnostic investigations
to improve symptom management, quality of life,
1. Ensure faster access to diagnostics and reduction in emergency admissions and fewer
investigations delays to discharges.
‘Our face-to-face appointments are back – but It’s critical to resume face-to-face appointments as
we need to get our biopsy service (with surgeons) soon as possible to avoid delays in giving people
back on track and we were developing detailed a diagnosis, and to be able to fast-track access to
neuromuscular therapy assessment clinics a treatment plan and any emotional and welfare
(mainly for Duchenne muscular dystrophy) which support they may need. This aligns with one
I would be keen to progress with.’ of the four main priorities outlined in the Rare
Feedback from a clinician on the impact of Disease Framework, to help patients receive a
COVID-19 on neuromuscular services final diagnosis faster and reduce the “diagnostic
odyssey” faced by so many’10. We urge the NHS
to re-establish these services as soon as possible
13SHINING A LIGHT – THE IMPACT OF COVID-19
by both extending clinic opening times and number of new referrals in comparison with a more
speaking with clinicians to identify opportunities normal year. This suggests that either patients are
for increasing capacity. not seeing their GPs for the early signs of a muscle-
wasting condition or GPs are hesitant to refer them.
2. Reduce waiting lists and address the
growing backlog of new and follow-up Extending clinic opening times will enable
appointments. neuromuscular centres to offer more appointments
and ensure those waiting can be seen more quickly.
‘We mostly wish to recover the lost time, prioritise It was reassuring to find, through our survey, that
patients based on needs (that might have although specialist neuromuscular staff were
changed during lockdown), so this is very time- redeployed across the NHS as part of the response
consuming. We would like to capitalise on the to the COVID-19 pandemic, most have now returned
home assessment monitoring, but there is no to their normal service. So it may be possible to
immediate source of funding for expanding in extend clinical hours in the short term to address the
this area.’ backlog.
Clinical feedback on resuming services post-
pandemic 3. Open face-to-face appointments to
people for whose wellbeing it is essential
Neuromuscular services have had to incorporate and retain effective digital technology for
new ways of attending to patients during the virtual appointments for clinicians and
pandemic, with the use of virtual tools. However, patients who agree to this approach.
this resulted in the cancellation of many critical
appointments, with 75 percent of people ‘We need to return to appropriate face-to-face
with a muscle-wasting condition we surveyed clinics led by the most appropriate member of
having experienced disruption to specialist the MDT. We also need to find a way to integrate
muscle clinical appointments, 40 percent NorthStar/REACH data collection (a registry of
having experienced disruption to specialist people with muscle-wasting conditions) into our
respiratory care appointments and 54 percent adult services.’
having experienced disruption to specialist Clinical feedback on resuming services post-
neuromuscular physiotherapy appointments. As pandemic
a result, waiting lists have been growing and 63
percent of the neuromuscular centres we surveyed When the pandemic first began, 97 percent of
have seen an increase in waiting times for face-to- the neuromuscular centres we surveyed had
face neuromuscular MDT appointments, between to cancel routine face-to-face neuromuscular
March 2020 and February 2021. clinics. Even though 94 percent overall found
holding telephone and video consultations
Services are still taking place virtually, meaning this during the COVID-19 pandemic successful, our
backlog is only increasing, and it will be difficult findings have shown an urgency to resume critical
to catch up. The King’s Fund analysis of current clinical appointments. It’s also clear that virtual
general waiting times concludes that ‘the impact consultations are only appropriate in line with
of COVID-19 on waiting times for NHS patients will the overall wellbeing of the patient. For example,
be felt for years to come’. Tackling waiting times patients with more severe disease progression
cannot wait, particularly as the list does not consider need to be assessed physically to provide
those who are still waiting for an initial referral to appropriate treatment.
a specialist centre. Our survey found 48 percent of
neuromuscular centres have seen a reduction in the Clinical feedback highlighted that it was
14SHINING A LIGHT – THE IMPACT OF COVID-19
impossible to gather vital information, such appointment (such as diagnostic testing) rather
as ambulatory function and muscle strength than a virtual one. People with muscle-wasting
deterioration, through a screen. It was particularly conditions may also feel more reassured if a carer
reiterated that a combination approach may be or family member can accompany them when
appropriate in certain circumstances for patients attending appointments. Administrative staff also
who are most well, however those in more need the tools to address any concerns patients
advanced stages of their condition need face-to- may have about attending appointments and ways
face appointments. to make the patient feel more comfortable about
attending them.
We have also shown in the previous priorities that
without face-to-face appointments there have 5. Improve staff support to ensure retention,
been delays in diagnosis and a growing waiting provide upskilling, and avoid burnout.
list for those waiting for specialist neuromuscular
appointments. Anecdotal feedback has shown that It won’t be possible to accomplish any of the above
some face-to-face appointments are now being priorities without sufficient numbers of specialist
offered but that numbers are still limited owing to staffing. Even though most staff members who
social distancing measures. However, these patients were redeployed amid the pandemic have now
cannot continue to wait for crucial neuromuscular returned to their normal work areas, there are
services. As such, it is imperative to widen the rising cases of staff burnout and PTSD within the
offering of face-to-face appointments and make sure NHS. For example, NHS providers have previously
healthcare practitioners have the right tools to review said the pandemic has put ‘sustained physical,
with their patients their need and preference for face- psychological and emotional pressure on health
to-face appointments. staff which is threatening to push them beyond
their limits’ .
4. Secure the confidence of people living
with a muscle-wasting condition and We are concerned that the additional pressure of the
make sure they know that if they are pandemic will affect specialist neuromuscular staff
called into a face-to-face appointment, and they may not feel able to take on this additional
that it will be a safe space. workload. There are also shortages in the number
of specialist neuromuscular consultants for children
Most specialist appointments for people with and adults, as well as junior doctors with an interest
muscle-wasting conditions were cancelled to in neuromuscular conditions in the medical training
minimise the risk, as they were deemed ‘clinically system. There needs to be safe staffing to ensure the
extremely vulnerable’ to COVID-19. As a result, effective functioning of all NHS services but, for rare
many people with a muscle-wasting condition did disease areas, there is already a shortage of specialist
not feel comfortable leaving their house even to clinicians. We are therefore asking the Government
attend their clinical appointments, out of fear of and NHS to support staff retention and upskilling
‘catching COVID-19’. With restrictions scheduled to to maintain safe staffing levels at neuromuscular
ease fully from 19 July 2021, healthcare providers centres.
need to help people living with a muscle-wasting
condition feel confident that it is safe to come in Key priorities to improve the long-
for their healthcare appointments. This will require term outcomes for people with a
reassurance on infection prevention measures in muscle-wasting condition
place when attending their clinics, and an open
dialogue between healthcare practitioners and 1. Equitable access to a specialist MDT
their patients on whether they need a face-to-face (a core team of specialist consultants,
15SHINING A LIGHT – THE IMPACT OF COVID-19
physiotherapists, mental health related to patients who had previously been seen at
professionals, neuromuscular care a specialised service (median = eight days) than for
advisors) across the UK. patients who were not known to a neuromuscular
service (median = 15 days).
‘We need to continue to develop and see
investment in our service. We are keen to Alongside the development of specialist care for
develop more outreach clinics with our regional children and young people, the development
colleagues and adult services and transition and use of the latest treatments and improved
remains an area that needs a lot of development.’ standards of care in recent years has led to
Clinical feedback on resuming services post- a growing population of adults. This older
pandemic population will now require continuing, high-
quality anticipatory care and support to ensure
Muscle-wasting conditions are rare and complex they enjoy the best possible quality of life. With
multi-system disorders that result in a wide variety this change in demographics and the revolution
of symptoms; some conditions result in mild in care and treatment for some conditions,
symptoms and slow deterioration, while others are we are calling for the development of service
life-limiting. Consequently, effective management specifications in paediatric and adult services, as
of these conditions requires specialist multi- well as in the transition phase between the two to
disciplinary care delivered by a team of trained and provide best-practice guidance to neuromuscular
experienced neuromuscular health professionals, services. This would ensure that each service has
with staffing levels appropriate to the size of the the tools to establish a managed clinical pathway
patient population. This team should include at a that incorporates both multi-disciplinary working
minimum: and access to effective and efficient treatment.
• specialist neuromuscular consultants to Access to an MDT will also reduce the number of
monitor deterioration and provide appropriate preventable admissions. On average, adults with
treatments muscle-wasting conditions have a median stay of
• a neuromuscular physiotherapist to help 12 days, ranging from 0-231 days19. This is slightly
strengthen muscles and promote mobility less for children, who have a median stay of eight
• a specialist psychologist who understands the days, ranging from 0-114 days. Given the changing
mental health impact of living with a muscle- demographic, it is important to understand their
wasting condition changing needs so that these numbers of days
• access to care advisor support to help assist do not increase even further. The way to do this
with welfare and support specific to each is through access to an MDT that is equipped to
patient group. handle their complex care.
Given that the management of such conditions With the implementation of ICSs – which will
involves a great number and range of professionals, include a move to improved integrated care and
a multi-disciplinary approach is the only way to a shift in commissioning for some rare diseases –
support these patients fully. A 2017 Muscular now is the time to invest in securing such MDTs
Dystrophy UK report on Unplanned Hospital across the country. Not only will this improve
Admissions in Patients with Neuromuscular Diseases care provision, but increased investment into the
showed that ‘unplanned hospital admissions are MDT will also help healthcare professionals tackle
more likely to happen if care is poorly co-ordinated more efficiently the backlog of patients waiting
and not proactive’. The report found that the for referral, diagnosis, and treatments, by tailoring
duration of hospital stay was shorter for admissions treatment plans to the individual patient.
16SHINING A LIGHT – THE IMPACT OF COVID-19
2. The establishment of NHS-managed neu- address unwarranted variation in neuromuscular
romuscular clinical networks across the services across the UK – areas that the NHS reform
UK, to help raise standards and bench- and Rare Disease Framework have set out to
mark services, as well as improve links with address.
and the education of health professionals
working in the community. 3. The provision of neuromuscular outreach
clinics and improved connection with
‘Organised, effective and compassionate community services.
leadership – moving away from medically-
led teams. Developmental opportunities for Many areas across the country do not have
neuromuscular team members to develop into easy access to neuromuscular services,
more advanced roles/ banding.’ resulting in people travelling long distances
Clinical feedback on resuming services post- for their specialist clinics. To address this, some
pandemic neuromuscular centres provide outreach clinics in
areas where patients are not receiving adequate
Managed Clinical Neuromuscular Networks specialist care. Outreach clinics have shown
usually comprise neuromuscular consultants, to be successful in addressing the postcode
specialist physiotherapists, care advisors, cardiac lottery of neuromuscular care and tackling
and respiratory specialists, NHS commissioners, health inequalities within these regions. With
and patient representatives. The current funded the means to provide virtual consultations, there
networks have led to improved services while may be scope to offer a combination of face-
facilitating relationships between stakeholders to-face appointments through outreach clinics
across the patient pathway. There are three funded for diagnostics and treatment, while offering
neuromuscular networks across the UK, which virtual appointments to support more consistent
focus on identifying both regional best practice monitoring.
and ways to fill gaps in neuromuscular care. The
networks ensure that patients have access to a With the upcoming NHS reform, there is an
full specialist MDT, offer upskilling events to raise opportunity to improve joined-up care of
greater awareness of muscle-wasting conditions neuromuscular services across secondary,
for healthcare professionals, and develop tertiary and community services. This will enable
resources for patients, including condition-specific smoother transition for patients between services,
information and support groups. for example from specialist physiotherapists to
community physiotherapists where appropriate.
Such networks have been essential in improving
neuromuscular care across the UK, but they require We are therefore asking for support within
consistent funding to ensure each is equipped outreach clinics and community services not only
with the appropriate clinical representatives and to improve neuromuscular healthcare provision
resources. We are asking the NHS to invest further across the UK, but also to provide staff with
in Managed Clinical Neuromuscular Networks to additional tools to start tackling the backlog of
address this inconsistency and ensure they each patients waiting for specialist treatment. This will
have sufficient provision. For example, only the mean reaching more patients, creating capacity in
Southwest, Northwest and Scotland networks specialist neuromuscular centres based on need,
receive NHS funding, but even then, they are and improving integrated care across multiple
funded in different ways. This investment will help healthcare providers.
promote integrated working, ensure patients
have access to properly-resourced healthcare and
17SHINING A LIGHT – THE IMPACT OF COVID-19
4. Equitable access to a psychologist or 5. Faster access to new treatments and
mental health specialist with expertise therapies, from NICE assessment to
in working with people with a muscle- patient roll-out.
wasting condition.
‘We need to ensure we catch up on recognising
‘If anything has been highlighted by this those children who might be eligible for SMA
pandemic, it’s the inadequacy of mental health [spinal muscular atrophy] gene therapy, so
provision.’ they don’t miss the window for access to new
Clinical feedback on resuming services post- treatments.’
pandemic Clinical feedback on resuming services post-
pandemic
The mental health of people living with muscle-
wasting conditions, many of which are life- ‘Ensuring catch-up on those who might be
limiting and life-shortening, has been overlooked eligible for SMA Gene Therapy as some may have
for decades. It’s exceptionally difficult being missed the EAMS window for Risdaplam.’
diagnosed with a muscle-wasting condition and Clinical feedback on impact of the pandemic
adjusting to a new lifestyle, and many people
in this situation can feel isolated, anxious, or Several treatments for muscle-wasting conditions
depressed. This is further exacerbated, as people are currently in development, are undergoing
with muscle-wasting conditions do not have market authorisation or have recently been made
access to specialist psychologists who understand available on the NHS. Avoidable delays in accessing
their complex conditions. The NHS Long-Term these treatments are common, causing many
Plan outlined the Government’s commitments to people’s muscle-wasting conditions to deteriorate
prioritising mental health, particularly for young further and possibly render them ineligible for
people . The UK Rare Disease Framework reiterated these treatments. There have also been further
the Government’s ambition ‘to ensure that the delays to the development of new treatments
needs of rare disease patients are appropriately this year, with 63 percent of the neuromuscular
reflected across wider government policy, centres we surveyed reporting that they paused
including mental health and social care’. clinical trials or other research studies during the
pandemic. This reinforced the need for NICE and
The impact of the pandemic and shielding has the Scottish Medicines Consortium to approve new
further exacerbated poor mental health for people treatments quickly as these treatments are more
living with muscle-wasting conditions, particularly effective when started as early as possible.
those who have been unable to work from home,
those who live alone or who have been isolated Some treatments are far more effective when given
from their loved ones. From our survey, 86 percent before symptoms even appear. This intensifies
of people living with a muscle-wasting condition pressure on the diagnostic process, as patients are
were shielding, with 62 percent of them saying usually diagnosed months after the first symptoms
that lockdown and shielding has had a negative appear. For some conditions, new-born screening
impact on their mental health. People with muscle- offers a way to mitigate this by making it possible
wasting conditions cannot wait any longer to to diagnose patients at birth. In the long term,
access specialist psychological services and we this will minimise lengthy hospital stays, limit the
urge the Government to consider how access can additional treatments and care needed throughout
be fast-tracked in this area. their lives, and reduce NHS resources including
staffing and cost.
18SHINING A LIGHT – THE IMPACT OF COVID-19
A prime example is newborn screening for spinal provided to other disease areas, such as Cystic
muscular atrophy (SMA), which is available in 16 Fibrosis (CF), has shown how beneficial this can
countries, but not in the UK. Data has shown that be in the long term. The UK CF Registry has a
treating SMA pre- and post-symptomatically can 99 percent completion rate to showcase the
have as significant an impact as the difference change in demographics, impact of treatment,
between a patient spending their life in a observations to changes in care (such as rise in
wheelchair or being fully ambulatory. We therefore comorbidities as a result of an ageing population).
urge the Government to implement newborn This could not be achieved without the work of the
screening where possible for muscle-wasting administrative staff who input this data. There is a
conditions, such as for SMA, to help fast-track risk to this first wave of treatments for people with
access to treatments. muscle-wasting conditions not being recorded
accurately enough to benefit the community they
We also urge the Government and key decision- have been developed for.
makers to consider ways of ensuring that
upcoming initiatives (such as the NICE methods Recommendations and next steps
review and the Innovative Medicines Fund) result to be completed within five years to
in faster access to new treatments. This will require improve outcomes for people living
support throughout the drug authorisation with a muscle-wasting condition
process, from the moment treatments are
submitted for licensing until national roll-out to 1. A banded national payment system to be
patients. established that reflects the cost of specialist
MDT care for people living with a muscle-
6. Strengthened administrative support for wasting condition.
data collection and improved clinic co- 2. The implementation of a clear commissioning
ordination. pathway to all recognised NHS England and
devolved nation neuromuscular specialist
It is imperative to continue capturing high- services.
quality data and inputting it into UK national 3. The development of and implementation of
neuromuscular databases to capture the impact NHS England national neuromuscular service
of the pandemic and the changing care needs specifications for specialist care of children and
for people with muscle-wasting conditions. adults.
This natural history data will help to document 4. NICE and the Government to fast-track the roll-
the impact of potential treatments and care out of the Innovative Medicines Fund so that no
throughout a person’s lifespan and observe person waits longer than necessary to access
changes to this ageing patient demographic to new treatments.
support them better. 5. The establishment of NHS-managed regional
neuromuscular clinical networks across the UK.
Multi-disciplinary working and improved data 6. Review already existing NHS databases of
collection require strengthened administrative people living with a muscle-wasting condition
support to equip staff to undertake this additional to ensure they are fit for purpose and are
work. We urge the Government to ensure staff administered well.
have access to any training, technology, or other
support they need as the long-term benefits to
patients and neuromuscular centres cannot be
overlooked. We appreciate this requires further
investment and time, but the additional support
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