Category Archives: Muscular Dystrophy

Only 3% of public think all UK tourist attractions suitable for wheelchair users

A YouGov poll carried out to mark the 10th anniversary of Trailblazers – Muscular Dystrophy UK’s national network of 800 young disabled people – shows that despite many advances in disability rights, most people’s experiences show there is a long way to achieving full accessibility.

Trailblazers

The survey found that:

  • Only three per cent of UK adults think all tourist attractions provide easy access for wheelchair users
  • Only 11% of UK adults think all Premier League grounds provide easy access for wheelchair users
  • Only 6% of UK adults think all UK railway stations provide easy access for wheelchair users

The advance of disability rights has been reliant on campaigning by organisations such as Trailblazers – and remains a patchwork of successes and work yet to be done. For example, while more railway stations now provide step-free access, half of stations remain inaccessible and assistance often needs to be pre-booked. There remain issues with staffing support, onboard toilets and making vital services like ticket machines accessible across much of the country.

Lauren West, Trailblazers Manager at Muscular Dystrophy UK, said: “We are so proud of the hard-won results that our Trailblazers have achieved in the last decade, and it’s encouraging that members of the public recognise the difficulties disabled people face when it comes to accessibility. But the headline successes should not leave people under the impression that the UK is now fully accessible.

“Take Premier League stadium access. It’s only after years of work by disability groups like Trailblazers that we are finally seeing clubs providing enough space for wheelchair users. But even that achievement just covers topflight clubs on one measure, and we still hear from disabled fans who have to sit away from friends or families, or even with the opposing team.

“We know it can be complex – the good practice guide on accessible stadiums is 116 pages long. But working with groups like Trailblazers is essential if businesses and organisations want to make sure they are open to everyone. Today we celebrate our achievements but now we want to hear from the next generation of young disabled people to help us tackle the next decade of advancing our rights.”

Trailblazers is a national network of almost 800 young disabled people and their supporters, and is part of Muscular Dystrophy UK. The group campaigns for change, provides guidance, and is an expert in what life is like for young disabled people. Members are passionately committed to challenging the barriers in society that stop us from living full and independent lives. The group launched in 2008, with 50 people at a meeting in London. Since then, it has successfully campaigned on issues such as accessible public transport, airlines, gaming and hate speech. Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions.

Since its launch in 2008, Trailblazers’ achievements include:

  • Lobbying Twitter to update its rules to protect disabled people from hate speech. The social media giant went on to introduce the measures called for by Trailblazers
  •  Launching a report on accessible gaming and trialling Microsoft’s new adaptive controller for XBox
  • Fighting for accessible public transport in two End of the Line reports – published in 2009 and 2016 – which resulted in the government announcing new measures in early 2018 to ensure wheelchair users can access buses.

Trailblazer Connor Colhoun, 21, from Glasgow, said: “I’ve been to theme parks, and although it’s not usually possible to go on the rides, they do cater for wheelchair users. Things are definitely improving for disabled tourists, and accessibility is much better now than it used to be; I think that must be because there is more awareness. I recently went on the Harry Potter Warner Bros. Studio Tour, and it was excellent – everything was so accessible.”

2,134 people were surveyed on 4th and 5th July 2018 in the Muscular Dystrophy UK-commissioned survey by YouGov.

Law still not protecting overcharged disabled taxi passengers

A new law to protect disabled taxi passengers from being overcharged still doesn’t apply because most councils haven’t made the right preparations, according to disability activist research.

Taxi image

Only a third of councils in England, Wales and Scotland have created so-called Section 167 lists, which are needed to hold taxi drivers to account if they discriminate against disabled passengers.

A change in the Equality Act enacted in April last year means that taxi drivers now face fines of up to £1,000 if they refuse to transport wheelchair users or attempt to charge them extra. But this only applies to vehicles listed on Section 167 lists, which councils need to create.

Comprehensive research of 340 councils by disability activist Doug Paulley shows that most haven’t created them yet and 42 have no intention of ever doing so, despite a government-recommended deadline of October 2017.

The research lays bare the complex problems around the law change, with many councils confused as to their obligations. Around one in six councils that reported having a list in place have not met technical requirements, meaning they may not be legally useable.

The complexity has contributed to low awareness of the law change. No-one outside of London has attempted to use the law to hold taxi drivers to account for overcharging, ignoring or otherwise discriminating against disabled taxi passengers, despite the widespread and ongoing issues that Muscular Dystrophy UK hears from its supporters.

Nirav Shah, who has congenital muscular dystrophy and lives in Nottingham, said: “I’m a regular taxi user, but have had more bad experiences than good. Drivers have refused to take me, or have claimed that their ramp doesn’t work. I have also had some drive off and leave me on the pavement, and companies quoting twice what a metered fare would normally be. Disabled people should be able to get a taxi as easily as everyone else, and they certainly shouldn’t be charged more, but sadly this isn’t the case.”

Paulley’s research also shows:

  • 12 councils have no wheelchair-accessible taxis, with a further 109 having fewer than ten;
  • Only a third of councils provide disability awareness training, vital for ensuring taxi drivers know how to safely work with disabled people.

Muscular Dystrophy UK and Doug Paulley are calling for the Department for Transport to make the lists mandatory, arguing that the current system has proven unworkable.

Nic Bungay, Director of Campaigns, Care and Information at Muscular Dystrophy UK, which lobbied for years for the law change, said: “Taxis are often the only way that disabled people can get from A to B when public transport isn’t an option but the new legislation simply isn’t working to help ensure they can do so safely and fairly. Doug’s research robustly demonstrates the impossible situation that many disabled people find themselves in. Passengers, taxi drivers and councils alike are crying out for clearer guidance, and we need to see the taxi lists made mandatory, to make this well-intentioned law workable.”

Doug Paulley carried out the research following a Select Committee report into the Equality Act 2010 on disability. He said: “This new research provides a mixed bag of results: while some councils have made an effort to create a list, many have fallen foul of the complex fine print in the rules, leaving most passengers unable to use the new legislation. Councils alone can’t unpick the confusion. We need to see a stronger lead from the Department for Transport if disabled people are to get the tools they need to challenge overcharging and unsafe practices.”

Research by Muscular Dystrophy UK in 2016 indicated that a quarter of disabled people have been refused service by a taxi driver, purely because they are disabled.

For more information, visit: www.musculardystrophyuk.org.

 

UK Civil Aviation Authority airport accessibility report released

The UK Civil Aviation Authority (CAA) has published a report which assessed the top 30 UK airports on the quality of assistance they provide to disabled passengers.

Airport photoThe report shows that the number of passengers requesting assistance continues to grow, with assistance requested in over three million journeys in 2016 – a 66% rise since 2010.

The majority of airports rated by the CAA report are providing ‘very good’ or ‘good’ support.  However, four airports, including London Heathrow and Manchester, have been told they must improve after falling under the ‘poor’ rating.

The CAA framework for rating the quality of assistance provided to disabled travellers is the first of its kind in Europe.  It was introduced to ensure there is a consistent and high quality service for disabled passengers across UK airports.  The CAA assesses airports against a number of measures to establish how well they are performing for disabled passengers.  Where airports regularly under-perform, the CAA can take enforcement action to ensure services are improved.

Six airports were rated as ‘very good’ including Birmingham, Glasgow and Humberside airports.  20 were rated as ‘good’  including Belfast International, London Stansted and Edinburgh airports.

Michaela Hollywood, Campaigns Officer for Trailblazers –  Muscular Dystrophy UK’s young disabled campaigners network – said: “Our Up in the Air investigation painted a picture of how many young disabled people find it difficult to use air travel.  Young professionals need to travel for business, while many young people find that travelling to new countries enriches their lives and is a part of their identity.

“Air travel can go smoothly.  However, it is clear that monitoring systems are needed to identify the issues in specific airports and encourage them to make their assistance better for disabled passengers.

“Being able to get from A to B without undue stress and anxiety is important for everyone, and disabled people deserve to experience all the thrills of travelling to new parts of the world by plane.”

To find out more about the report and the MDUK Trailblazers, click here.

NMC in Winsford opens new annexe

The NeuroMuscular Centre in Winsford opened its extended building recently and the Lord-Lieutenant of Cheshire was there to cut the ribbon.

Lord-Lieutenant of Cheshire David Briggs opens the new NMC building with Chief Executive Matthew Lanham.

Lord-Lieutenant of Cheshire David Briggs opens the new NMC building with Chief Executive Matthew Lanham.

The NeuroMuscular Centre (NMC) was founded in 1990 and provides a range of services and specialist advice for adults with muscular dystrophy and other neuromuscular conditions. A new annexe was recently added to the centre to enable it to offer even more services.

Over 100 people turned up for the opening and to have a look round the improved centre, which contains physiotherapy treatment rooms, a specialist gym and a design and print business. Guided tours took place, a buffet lunch was served and members of staff were on hand to answer questions.

The Lord-Lieutenant of Cheshire, David Briggs, officially opened the new centre and congratulated the NMC on its success.

The NMC offers a range of other services such as complementary therapies, bushcraft skills courses in the recently developed garden at the centre, a wheelchair football team and a range of support and advice for adults with muscular dystrophy. The NMC is the only centre of its kind in the UK.

 

Equality Act taxi changes come into force

On 6th April 2017, sections 165 and 167 of the Equality Act 2010 officially commenced, offering new protection to disabled people travelling in a taxi.

Equality Act taxi changes come into forceThe change in law brings three key new protections to disabled people in England and Wales.  This means that taxi and private hire vehicle drivers will be obliged by law to:

  • Transport wheelchair users in their wheelchair
  • Provide passengers in wheelchairs with appropriate assistance
  • Charge wheelchair users the same as non-wheelchair users.

Any drivers who do not follow these rules and don’t have a medical exemption will face a possible £1,000 fine.

Transport Minister Andrew Jones said:We are committed to building transport networks that work for everyone, ensuring that disabled people have the same access to services and opportunities to travel as anyone else. Disabled people are often heavily reliant on taxis and private hire vehicles and this change to the law will mean fair and equal treatment for all.

“The new rules will apply in England, Wales and Scotland affecting vehicles that are designated as wheelchair accessible and will apply to both taxis and private hire vehicles. All taxis in London and a significant number in most major urban centres are wheelchair accessible.”

In a change to the law drivers found to be discriminating against wheelchair users face fines of up to £1000 as part of provisions being enacted from the Equality Act. Drivers may also face having their taxi or Private Hire Vehicle (PHV) licence suspended or revoked by their licencing authority. Drivers unable to provide assistance for medical reasons will be able to apply to their licensing authority for an exemption from the new requirements.

It is hoped that these new requirements on taxi and private hire vehicles will complement the rules already in place to prevent discrimination against the use of assistance dogs and underline Government’s wide-ranging commitment to supporting transport networks for everyone.

Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK, said: “This is a victory for all people with disabilities who experience daily struggles with accessible transport.

“Being able to get from A to B is usually very easy for most people, however we know that this can be a challenge that affects a disabled person’s entire life, including their ability to have a job and play an active part in society.  This is a positive and very welcome step in the right direction which we hope will not affect the number of accessible taxis being made available by companies because of the duties now being placed on to drivers.

“Muscular Dystrophy UK and our Trailblazers have been campaigning on this issue for many years, and we commend the government for listening to the views of disabled people.”

Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. Find out more on their website: www.musculardystrophyuk.org.

Muscle charity seeks funding from Aviva

Aviva Community Fund bannerNMC Midlands, a charity set up to offer support to people with muscular dystrophy and other muscle wasting diseases in the Midlands region, has been shortlisted for the Aviva Community Fund and is looking for people to vote for them.

The Neuromuscular Centre (NMC) Midlands, based in Coventry, provides support for over 400 clients who suffer from muscular dystrophy, a muscle wasting disease with no treatment or cure. The Centre has been shortlisted for the Aviva Community Fund, and now needs votes to help it win up to £1000.

The Aviva Community Fund offers the chance for local community projects to win funding and with enough votes from supporters, NMC Midlands has the chance to be entered into the finals, where a judging panel will award the funds.

The correct physiotherapy is essential to people with muscle wasting diseases as it maintains mobility and reduces the rate of muscle deterioration. However, people with these conditions experience a significant reduction in the amount of physiotherapy they receive from the NHS after turning the age of 19.

One of the main services NMC Midlands offers is free and continuous specialist physiotherapy for people with muscle wasting diseases. In addition, they have services available to offer support for other areas of life that become challenging to people with these conditions.

To vote for NMC Midlands, click on the following link before 18 November 2016: https://community-fund.aviva.co.uk/voting/project/view/16-913.

To find out more about the wide range of services offered by NMC Midlands and how to get in touch click here.

Muscular dystrophy drama ‘Don’t Take My Baby’ wins BAFTA

TV drama ‘Don’t Take My Baby’, about a young person with muscular dystrophy, has won a BAFTA for Best Single Drama at this year’s BAFTA Awards in London.

IMG_1340-270x200At the beginning of 2015, BBC Three made contact with Muscular Dystrophy UK – the charity for people living with muscle-wasting conditions – as they were making a drama featuring a lead character called Anna who had Minicore Myopathy Muscular Dystrophy (MMMD).

The drama would tell the story of a young disabled couple who have a baby together but are constantly and intensely supervised by social services, who are concerned the couple cannot look after the child due to their physical disabilities.

BBC Three wanted to find a young person who had MMMD who could tell actress Ruth Madeley about living with MMMD.

Laura Bizzey who has MMMD agreed to visit Ruth on set and said: “Ruth and I chatted for a long time about the role she was playing and I tried to give as much detail about how MMMD affects me on a day-to-day basis and told her about any other restrictions I have that could be portrayed in the character.”

Following on from the BAFTA win, Laura said: “I sat watching the BAFTAs with my fingers tightly crossed, hoping that ‘Don’t Take My Baby’ would win the BAFTA for best single drama. When it came to their category and DTMB was read out as the winner, I was elated!! So, so incredible and well deserved!!

“A truly great drama, created by an amazing team of people – I am so so proud that all their hard work has been acknowledged and that people have been able to see not only the quality of the acting and production, but also the raw truth of what disabled parents have to deal with when they have children.”

Muscular Dystrophy UK is delighted that big channels and programmes are recognising the need to put rare conditions at the forefront of stories, but more still needs to be done around diversity in the media. Jack Thorne, who wrote Don’t Take My Baby, highlighted the problems that exist in his acceptance speech.

“We’re having a wonderful debate about diversity at the moment and trying to sort out the problems in our industry, and the sector that seems to get missed out quite a lot of the time is disability. The cuts to access to work are making it very difficult for theatre, film and TV companies to employ disabled talent and that’s wrong and that’s got to change.”

To find out more about muscular dystrophy, visit www.musculardystrophyuk.org

World Duchenne Awareness Day 2015

Muscular Dystrophy UK logoThe second World Duchenne Awareness Day (WDAD) takes place on Monday 7 September 2015 and over the coming week Muscular Dystrophy UK, the leading charity for all individuals and families living with Duchenne muscular dystrophy,  will be sharing ways to actively get involved in spreading awareness of this debilitating disease.

In the lead-up to the day the charity will be sharing stories and updates on research and campaigns from across the UK on important topics close to the heart of people living with Duchenne muscular dystrophy.

The charity’s campaigning work is taking the voice of individuals and families affected by Duchenne to the very top of Government and the NHS. With families, they are campaigning for access to potential treatments, specialist healthcare and the support they need to live full and independent lives. Currently there are nine MDUK-funded research projects underway focusing on Duchenne muscular dystrophy.

The charity says there are a number of ways people can get involved in World Duchenne Awareness Day:

  • Sign up to our World Duchenne Awareness Day Twibbon: add this Twibbon to your Twitter and Facebook picture.
  • Share our infographic: watch this space for our infographic outlining the key facts about Duchenne and the current research projects we are championing.
  • Stay tuned to social media: We will be sharing many stories and holding a Q&A session on Monday 7 September on Facebook at 6.30-8pm with our Director of Research, Dr. Marita Polshmidt.
  • Get involved around the world: follow #WDAD15 and #Duchenne on Twitter to follow all Duchenne charities across the world and support Duchenne Balloon campaign.
  • Help move forward cutting edge research by donating to our Duchenne Research Breakthrough Fund.
  • Read about our Family funds: the stories of our incredible army of families who are the driving force behind the fight to find a cure for Duchenne. Find out more about creating your own Family Fund.
  • Skydive: do you have what it takes? If yes join us in Make Today Count our annual skydiving fundraiser raising money for the Duchenne Research Breakthrough Fund. So far Make Today Count has raised an impressive £389,566.

To find out more visit www.musculardystrophyuk.org

“RIGHT CHAIR RIGHT TIME RIGHT NOW” campaign launched

Right Wheelchair LogoA national group of wheelchair users and advocates, led by Baroness Tanni Grey-Thompson DBE, is calling for an improvement to wheelchair services in England, before more people are adversely affected by poor levels of service.

The Wheelchair Leadership Alliance, chaired by Baroness Grey-Thompson, is a commitment group tasked with improving wheelchair services for users across England. It was formed after the second NHS England wheelchair summit in November 2014, and brings together representatives of key stakeholder groups under one umbrella to work collectively to make a lasting positive change to wheelchair services.

According to the Alliance, it is crucial that wheelchair users receive the right chair at the right time in order to lead a normal life, but many users often face severe delays to receive their chair; this leads to harm and waste. Additionally, there are no set standards for budget per user and there is no current clear idea of what is spent on wheelchair services in NHS England, leading to widespread confusion and varied levels of service for users across the country.

Baroness Grey-Thompson said: “For too long wheelchair services have been inadequate and it is time that wheelchair users are listened to and provided a proper service, rather than being marginalised. The huge variation in quality of services across the UK is astounding, and means a huge proportion of wheelchair users are left immobilised, frustrated and ignored.

“Now we want to get this issue on the radar of people who can influence change and also get them behind the campaign by urging them to pledge their support to the Charter.”

In addition to healthcare professionals and CCGs, members of the public can pledge their support to the Wheelchair Charter and campaign online through the Alliance’s website www.rightwheelchair.org.uk. The Alliance hopes that support from people in positions of influence, as well as the general public, will help bring about change faster.

The charter is a 10 point document which outlines the key principles that wheelchair services should aspire to and can be accessed through the Wheelchair Leadership Alliance website.

The Alliance acts as an advocate for people who use wheelchairs, their carers and families. It has an overarching aim of taking action to transform the quality and effectiveness of services for people who use wheelchairs across the UK.

Research by Muscular Dystrophy UK found that wheelchair users with muscle wasting conditions often face severe delays to receive their chair:

  • 70% wait more than three months
  • 30% face a delay of more than six months
  • 15% wait more than 12 months
  • Unfortunately it is a very similar story for all wheelchair users

For every 182 wheelchair users not able to work, the benefits bill can increase by up to £1m, and yet the positive economic contribution made when wheelchair users are in work can be up to £4.7m.