A husband and wife with life-limiting muscle-wasting conditions have revealed the devastating ongoing impact the Covid-19 pandemic has had on their physical and mental health.
On a normal day, Charlotte and Tom Hardwick, both aged 30 and from Nottingham, say they would be at risk of dying if they were to catch a common cold. They are classed as clinically extremely vulnerable because of their rare and progressive muscle-wasting conditions, and over the past 18 months have experienced huge disruptions to vital care and medical appointments amid the pandemic.
Today (Wednesday July 21), Muscular Dystrophy UK will present vital findings and urgent recommendations before an All Party Parliamentary Group following a landmark survey conducted earlier this year that asked people about their experiences of the pandemic.
Charlotte and Tom are just two of the UK’s 70,000 people living with muscle-wasting conditions who need the report’s recommendations to be addressed and implemented as a matter of urgency. This is because it’s essential that people living with a muscle-wasting condition have access to specialist health care, regular exercise, daily essentials, care packages, family support systems and physiotherapy to lead safe and healthy lives.
But key findings from our survey found:
- 68% of respondents living with a muscle-wasting condition said lockdown and shielding had a negative impact on their physical health and 62% said it had a negative impact on their mental health
- 45% of people experienced reduced access to family carers or care workers due to lockdown or shielding
- 75% of people experienced disruption or delays to accessing specialist muscle clinical appointments due to Covid-19
We’ve lost nearly all of our regular hospital input and accessing appointments. We haven’t been able to physically attend appointments and normally we’d have regular cardiology and respiratory appointments but these were all put on hold. We’re still chasing results from appointments that took place more than six months ago. I feel scared that nobody’s really monitoring what’s going on with us. There are massive inequalities to accessing healthcare when you have a disability and Covid-19 has shone a magnifying lens on this.
Even before the pandemic we had a sense that provision was shrinking dramatically in terms of a specialist and co-ordinated approach to our care. The pandemic has massively exacerbated and accelerated this originally-existing problem, especially in relation to occupational therapy and accessing equipment.
Muscular Dystrophy UK is calling for both short and long-term recovery priorities from the government to improve the lives of people living with muscle-wasting conditions. These include:
- Access to a specialist neuromuscular multidisciplinary team with input from a core team of specialist consultants, physiotherapists, mental health professionals, neuromuscular care advisors across the UK
- The establishment of NHS-managed neuromuscular clinical networks across the UK to help raise standards and benchmark services
- The provision of neuromuscular outreach clinics and improved connection with community services
- Access to a psychologist or mental health specialist with expertise in working with people with a neuromuscular condition
- Faster access to new treatments and therapies, from NICE assessment to patient roll-out
Both of us are majorly concerned about what Freedom Day really means for people living with muscle-wasting conditions. We will be tightening up on the rules that we use with our carers in order to keep safe. The anxiety is crippling. This is our lowest point in terms of feelings about the pandemic specifically. Having better joined-up care would make us feel like there is a safety net there to protect us.
We’re not at the end of life stage and still have plenty of living to do but we’re also not fixable either. There urgently needs to be a more holistic approach to services that span both health and social care and we hope that the government listens to and adopts Muscular Dystrophy UK’s recommendations from their report.
Catherine Woodhead, CEO of Muscular Dystrophy UK, said:
Thousands of people living with a muscle-wasting condition have experienced significant deterioration in their overall wellbeing throughout the pandemic. Many services including specialist neuromuscular services referrals and diagnostics were halted or significantly reduced, leaving people with delayed diagnosis and no access to expert care. Consequently, many people living with these conditions have been unable to receive the full treatment and care they need and are at severe risk of faster progression of their conditions. Muscular Dystrophy UK urges the Government, NHS decision-makers, and NHS clinical staff across the UK to implement recommendations from our report to ensure people with a muscle-wasting condition receive the care they need to improve overall health outcomes and quality of life.
Download and read the report in full.