Muscular Dystrophy UK has issued a statement following news published today that Luke Garrett, 20, died earlier this year shortly after receiving his Covid-19 vaccine.
A spokesperson said:
His Royal Highness Prince Philip, the Royal Patron of Muscular Dystrophy UK for more than 50 years, has died.
The sad news of the Duke of Edinburgh’s death at the age of 99 was announced by Buckingham Palace.
Prince Philip became Royal Patron of MDUK in 1966, following a request from the late Lord Richard Attenborough, the charity’s then President. His support has enabled MDUK to play a vital role in leading the fight to beat muscle-wasting conditions, through funding research and campaigning for change.
Muscular Dystrophy UK has issued a response to the latest ONS figures that suggest close to 60% of people who died from coronavirus in England last year were disabled.
In response to Coronavirus and the social impacts on disabled people in Britain from the Office of National Statistics.
Rob Burley, Muscular Dystrophy UK director of Campaigns, Care and Support said:
He claimed he has seen “legal advice” that suggests the government “broke international law in how the Coronavirus Act reduced the rights of disabled people”.
Mr Davey, who has a son with a disability and is the patron of the Disability Law Service, referenced research from the Disabled Children’s Partnership.
Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:
“Many people living with muscle-wasting conditions will welcome this development – but for some it will not be appropriate. We’ve heard from some people who say they do not feel ready to stop shielding. It’s essential they are not forced out of it because they can’t access food and medicines, or because their employer demands they return to work when they do not feel it is safe to do so.
Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:
“The situation around shielding for people living with a muscle-wasting condition is already confusing. Not everyone with one of these rare conditions is classed as extremely clinically vulnerable, but many who are have struggled to have this confirmed. As a result, people have contacted us about issues such as being asked back to work by their employers when this would not be safe.
Like many charities, we have been hit hard financially by the COVID-19 pandemic. As a result, we took the difficult decision to place some of our employees on the Government’s Job Retention Scheme, also known as “furlough”. Sixty percent of our employees are on this scheme, and our other employees have agreed to take a 20 percent reduction in their salaries. You can read more about this here.
Many people living with muscle-wasting conditions are “clinically extremely vulnerable” and are having to practice shielding. The Government’s recovery strategy confirms that people in this group are currently being asked to shield until the end of June; and yet we know that as recently as the end of April people living with muscle-wasting conditions were receiving letters confirming that they are “clinically extremely vulnerable” and stating that they should shield for 12 weeks from the date of the letter.
Catherine Woodhead, Chief Executive at Muscular Dystrophy UK, said:
Muscular Dystrophy UK has placed 60 percent of its employees on the Government’s Job Retention scheme to weather the financial pressures caused by COVID-19.
The charity has had to cancel or postpone a number of events that generate a substantial amount of income, including its own Oxford Town and Gown 10k event, which was due to take place the week after London Marathon. It estimates it could lose £2.8m as a result of all cancellations.
Muscular Dystrophy UK has responded to new guidelines from the British Medical Association (BMA) on treatment for people with Covid-19. You can read this guidance here, which advises medics may need to prioritise care if the NHS becomes overwhelmed with new cases.
Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:
Muscular Dystrophy UK has released the following statement in response to the latest NICE guidance on critical care for patients with COVID-19. The guidance can be read in full here.
Disabled people and their families are being excluded from things as simple as shopping because some of the UK’s largest supermarkets and retailers do not have a fully-accessible Changing Places toilet.
Changing Places are needed by a quarter of a million disabled people in the UK, for whom standard accessible toilets are not suitable. But Muscular Dystrophy UK’s research into provision at supermarkets shows that Waitrose, M&S, Aldi, Lidl, Iceland and Co-op do not have a single registered facility.
Clare Lucas, Head of Policy and Campaigns at Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, said:
“It’s incredibly disappointing that almost a third of NHS Trusts have not applied for Government funding to install Changing Places toilets. It is crucial that hospitals have fully accessible Changing Places toilets so that people can attend important appointments or visit friends and family.
In an unprecedented partnership, a digital social enterprise and four UK health charities are coming together to harness the power of artificial intelligence (AI) for good – creating the UK’s first AI coaching tool of its kind to support long term health conditions.
Five Newcastle-based physiotherapists who work with people with muscle-wasting conditions are taking on the Great North Run to raise money for Muscular Dystrophy UK.
#TeamPhysio, who are based at John Walton Muscular Dystrophy Research Centre at Newcastle University, want to raise awareness of muscle-wasting conditions and highlight the life-changing work carried out by the charity.
Muscular Dystrophy UK is calling on the government and employers to take action to remove the barriers that make it difficult for disabled people to find and stay in work.
Trailblazers – the charity’s 750-strong group that campaigns for change – spoke to young disabled people and employers through a series of workshops during its 18-month Employability Policy Project. The scheme, which was funded by the City Bridge Trust, set out to identify the changes needed to improve things in the future for disabled job-seekers.
The UK’s capital is the worst-performing region when it comes to providing fully-accessible toilets known as Changing Places, which are essential for more than 250,000 people across the country with severe disabilities.
Clare Lucas, Head of Policy and Campaigns for Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, said:
“We welcome the government’s commitment to invest in fully accessible toilets in hospitals. Having access to a well-equipped toilet is a matter of respect and dignity for people who are severely disabled.
Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, said:
“People living with disabilities go to work, visit shops and enjoy days out with friends just like everyone else. But a lack of Changing Places toilets make these seemingly simple tasks a challenge. Too often, we hear stories of people not leaving their homes, having to be changed on dirty toilet floors or even having surgery because there are not enough facilities.
Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:
“When public transport is inaccessible, it takes away the independence of people living with disabilities. We regularly hear stories about people’s terrible experiences, such as being turned away by bus drivers or missing their stop on the train because no one is around to assist. It’s not acceptable.
Lauren West, Trailblazers Manager at Muscular Dystrophy UK, said:
“Plastic straws are sometimes the only type of straw that work for disabled people due to their flexibility and ability to be used in hot and cold drinks. While we appreciate the need to reduce the use of plastics, traditional single-use straws are essential for some disabled people.
It has been 16 months since NICE started its appraisal of Spinraza, the first treatment for the rare genetic condition spinal muscular atrophy (SMA). Without access, children with the most severe form of the condition are unlikely to reach their second birthday, while others will lose the ability to walk, and may have increasing difficulties breathing and swallowing.
He returns to the charity which he first joined in 2002 when it was called Muscular Dystrophy Campaign, heading up corporate partnerships which included five and six figure partnerships.
Since then he has gained considerable experience on many aspects of fundraising at Breast Cancer Care where he has been since 2007, successfully leading multi-channel mass participation fundraising campaigns and leading teams to success at local level.
Alec says:
Families affected by SMA, a rare genetic condition that can leave children unable to crawl, walk, breathe and swallow, have been given hope by news that Spinraza – a life-changing treatment – looks set to be available on the NHS in Scotland.
Spinraza has helped infants with the condition to live longer, and in some cases crawl and even walk or stand.
Muscular Dystrophy UK’s Chief Executive, Catherine Woodhead, says:
North Curry football fan Dr Sally Whittet has raised more than £7,000 for Muscular Dystrophy UK after cycling the 220 miles from Old Trafford to Stamford Bridge in memory of her godson.
Sally, 65, took on the five-day challenge in honour of Jonathan Holden, who had Duchenne muscular dystrophy. Sally chose to cycle between the two Premier League clubs, as Jonathan, 28, was an avid Manchester United fan, while she is a long-time Chelsea supporter.
Shakil Malji has set up a petition to make Spinraza – the first treatment for SMA – available for people with the condition. His five-month-old daughter, Maryam, has SMA Type 1 – the most severe form of the condition. Without access to the drug, life expectancy for children with SMA Type 1 is rarely longer than two years.
Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, said:
Catherine Woodhead appointed Chief Executive of Muscular Dystrophy UK
Catherine Woodhead has been appointed Chief Executive of Muscular Dystrophy UK.
Previously Director of Development with the charity, Catherine takes the helm following a full appointment process by the Board of Trustees.
A spokesperson said: “Christine Hamilton’s recent tweet clearly does not reflect or in any way represent the views of Muscular Dystrophy UK. We believe in a diverse and inclusive society, respect for all and we oppose all forms of prejudice and discrimination.”
Nic Bungay, Director of Campaigns, Care and Information at Muscular Dystrophy UK:
“SMA is a life-limiting rare condition and patients desperately need access to Spinraza – the first and only treatment for this devastating condition. Without it, babies with the most severe form of SMA are likely to die, while others will irreversibly lose the ability to walk, crawl, breathe and swallow.
British presenter and former Welsh international gymnast Gabby Logan is to be the new President of Muscular Dystrophy UK.
She follows her colleague, presenter and former professional tennis player Sue Barker, who has been a dedicated and active President for the charity since 2004.
Nic Bungay, Director of Campaigns, Care and Information at Muscular Dystrophy UK, said:
NICE, NHS England and Biogen must urgently come together to find a solution and put an urgent, temporary scheme in place for Spinraza before any more children’s lives are lost. Without access to this life-changing treatment infants will irreversibly lose the ability to walk, crawl and swallow, while babies with the most severe form of the condition are likely to die before they reach their second birthday.
Nic Bungay, Director of Campaigns, Care and Information and Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, said:
People with muscle-wasting conditions in Birmingham who need special cough assist machines to avoid life-threatening infections will be denied access to them on the NHS, if a proposed policy by clinical commissioning groups (CCGs) is agreed.
