Woman reveals the devastating impact of Covid
A CEREDIGION woman who lives with a muscle wasting condition has revealed the devastating ongoing impact the Covid-19 pandemic is having on her health.
Nicola Davies, 56, from Cardigan, has been left struggling to cope since the pandemic started in March last year and says she feels “forgotten about”.
She is classed as clinically extremely vulnerable because of her rare and progressive muscle-wasting condition limb girdle muscular dystrophy.
Nicola has experienced huge disruptions to vital care and medical appointments amid the pandemic which have impacted her physical and mental wellbeing.
My care has been severely disrupted during the pandemic and it’s made an already terrible situation much, much worse
Nicola said: “My life changed forever when Covid-19 happened, I’ve been left stuck in the house and I’m too scared to do anything anymore.
“I used to be on the go all the time, but my breathing has significantly deteriorated.
“It means I’ve had to stop singing, which was one of the greatest pleasures I had in life.
“I lost my mum to the virus earlier this year and I’m terrified that my husband or a carer will catch Covid and pass it to me.
“My care has been severely disrupted during the pandemic and it’s made an already terrible situation much, much worse.”
This month Muscular Dystrophy UK presented vital findings before a cross party parliamentary group in Wales following a landmark survey conducted earlier this year that asked people about their experiences of the pandemic.
The report, called Shining a Light on the Impact of Covid-19, reveals how the pandemic has affected people living with a muscle wasting condition in Wales, as well as exposing preexisting gaps in neuromuscular services.
The report highlights priority areas where there is need to strengthen neuromuscular care going forwards.
Nicola is one of the UK’S more than 70,000 people - and 3,400 people in Wales - living with a musclewasting condition 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.
Key findings from Muscular Dystrophy UK’S Shining a Light report found the main issues affecting people living with muscle-wasting conditions in Wales were:
Lockdown and shielding negatively impacting people’s physical and mental health
Reduced access to family carers or care workers due to lockdown or shielding
Disruption and/or delays to accessing specialist muscle clinical appointments due to Covid-19
Nhs-funded specialist neuromuscular services for children and adults across Wales have significant staffing gaps and underinvestment that predates the pandemic.
The report reveals that there is no resilient neuromuscular healthcare structure across Wales, meaning the neuromuscular workforce is overstretched and under resourced, compromising on vital care coordination and management.
This issue has been greatly exacerbated during the pandemic.
Nicola said: “I lost nearly all of my regular hospital appointments and many were moved online during lockdowns.
“I am very sad that the care services where I live are so underresourced and I feel that it’s a postcode lottery to access good-quality care at the best of times. The difference between England and Wales is enormous and I feel like I’m being forgotten about.
“We’ve been fighting for better care for years so it’s vital that stakeholders implement the findings from Muscular Dystrophy UK’S Shining a Light report.”
Muscular Dystrophy UK is calling for both short and long-term recovery priorities to improve the lives of people in Wales living with musclewasting conditions.
These include:
Formalising the Wales Neuromuscular Network and appointing an Nhs-funded network manager;
Allocating sustainable and consistent funding for neuromuscular services to accurately reflect the care needs of the neuromuscular population;
Increasing investment in the specialist neuromuscular teams with more neuromuscular consultants, physiotherapists, nurse specialists, psychologists, and care advisors;
Increasing the number of neuromuscular trained staff within community services who can bridge the gap between specialist neuromuscular teams in the core areas and their local areas.
Lucia Gillespie, Muscular Dystrophy UK’S advocacy and information officer for Wales, said: “People living with a muscle-wasting condition in Wales have told us that they’ve 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 living with these conditions have been unable to receive the full treatment and care they need. We urge stakeholders to implement the recommendations from our Shining a Light report to ensure people with a muscle-wasting condition receive the care they need to improve overall health outcomes and quality of life.”
Welsh Government was asked to comment on the concerns raised by Mrs Davies and the calls being made by Muscular Dystrophy UK.
Nicola Davies