We heard concerns arising because of the pandemic, such as continued delays to accessing critical appointments, mental health impact of not seeing family and carers whilst shielding, loss of mobility and muscle weakness and whether they will ever get back to how they were pre-pandemic. We also received 32 responses from neuromuscular clinical teams (accounts for over 50 percent of neuromuscular services in the UK) providing insight into staff redeployment and service gaps, impact on clinics, appointments and treatments, and the use of virtual consultations for people with muscle-wasting conditions.
The overall findings showed that people living with muscle-wasting conditions have struggled to access critical services such as specialist muscle clinical appointments (75%), specialist respiratory care (40%) and specialist neuromuscular physiotherapy (54%) because of the pandemic and shielding. This lack of provision has had a negative impact on their overall physical and mental wellbeing, with 68 percent stating that lockdown and shielding had a negative impact on their physical health and 62 percent stating that lockdown and shielding had a negative impact on their mental health.
Our findings also showed the COVID-19 pandemic had a significant impact on neuromuscular centres, where 97 percent had to cancel routine face-to-face neuromuscular clinics, 64 percent had to cancel appointments for diagnostic investigations and 72 percent experienced delays in DNA analysis required for diagnosis. As a result, there is now an ever-increasing backlog of patients waiting for critical appointments. Considering the pandemic is still ongoing, these findings offer only a glimpse of these experiences, and these issues will worsen until properly addressed.
Analysis of the survey responses also revealed a set of priorities for both people with a muscle-wasting condition and specialist neuromuscular healthcare providers. In the short term, neuromuscular services need to be provided with sufficient support to recover from the COVID-19 pandemic, such as faster access to diagnostics and investigations and open face-to-face appointments (where appropriate), and in the long-term to improve the improve outcomes for people with a muscle-wasting condition, such as access to a multi-disciplinary team, provision of outreach clinics, and equitable access to a mental health specialist.
To achieve these priorities, MDUK is calling for:
- Establish a national payment system to reflect of cost of specialist MDT care for people with a muscle-wasting condition and a national service specification for specialist neuromuscular care of children and adults to address the postcode lottery of services across the UK
- NICE and the Government to fast-track access to new treatments through the Innovative Medicines Fund.
- The establishment of NHS-managed regional neuromuscular clinical networks across the UK.
- Review already existing NHS databases of people living with a muscle-wasting condition to ensure they are fit for purpose and are administered well.
MDUK presented these vital findings and urgent recommendations at the All-Party Parliamentary Group for Muscular Dystrophy on Wednesday (21 July). We were pleased to see how many of people attended and that we also had parliamentarians, representatives of the National Institute for Health and Care Excellence (NICE) and NHS England in attendance.
The report launch was also picked up by BBC News and other media streams. We want to thank Charlotte and Tom Hardwick who were on BBC news with our own Robert Burley, Director of Campaigns, Care and Support, to raise awareness of the experience of people with a neuromuscular condition during the pandemic.
The insights from the community have been invaluable and we couldn’t have put this report together without you. This work is just beginning, and we are putting all our efforts into ensuring these recommendations are implemented by engaging with key Government and NHS decision-makers. We appreciate implementing these changes will take time, but MDUK won’t stop until everyone with a muscle-wasting condition has access to high-quality and appropriate neuromuscular care, regardless of where in the UK they live.
If you’d like to share you experience during the pandemic or get involved in this work, please get in contact with Michaela Regan at m.regan@musculardystrophyuk.org.