More than a quarter of a million severely disabled people UK-wide need access to Changing Places toilets. There are over 1100 Changing Places facilities in the UK.
Current building standards recommend that Changing Places toilets be provided in large buildings, such as large train stations, motorway services and museums. Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, want to see the law strengthened so that it is mandatory for all new buildings – such as theme parks – to feature them.
According to a story in today’s Metro, Govia Thameslink Railway (GTR) has told staff not to help disabled people on to trains if it might delay the service. Muscular Dystrophy UK has responded to the report, and is now urging Govia Thameslink Railway to work with our Trailblazers to prioritise accessibility for disabled passengers.
Govia Thameslink Railway denying assistance to disabled people to avoid delays is nothing short of discrimination.
Spinraza is the first and only treatment for patients with the rare inherited muscle-wasting condition spinal muscular atrophy (SMA), and today (Monday 7 May), the Scottish Medicines Consortium (SMC) recommended that it should be made available on the NHS in Scotland for children with Type 1 SMA. However, it did not approve the treatment for patients with Type 2 and 3 of the condition.
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.
Twitter has made reporting hateful comments against disabled people easier following extensive campaigning by Muscular Dystrophy UK.
Previously, abusive tweets based on someone’s race, religion, gender or orientation were readily reportable in a dropdown menu on Twitter, but disability was not listed as an option.
Spinraza is the first and only treatment for patients with the rare inherited muscle-wasting condition spinal muscular atrophy (SMA). Without access to the drug, life expectancy for those with SMA Type 11 is rarely longer than two years. The drug is also holding promise for people with other forms of SMA.
At a special meeting on 3 April, families affected by the condition will make a final plea to the Scottish Medicines Consortium (SMC) to approve Spinraza for use on the NHS in Scotland2.
Alan Shearer, Gabby Logan, Jon Richardson and Ricky Wilson are also among the stars featured in a video which will be screened before the Leeds United vs Sheffield Wednesday game to encourage people to donate to Muscular Dystrophy UK.
The video and fundraiser has been organised by Martin Hywood, a lifelong Leeds United fan who was diagnosed with limb girdle muscular dystrophy 20 years ago. The condition means he can’t go more than a few steps without feeling pain.
The West Midlands Family Support Group will be launched with Muscular Dystrophy UK to help families learn how to get access to vital support. It will also help to break down some of the language and cultural barriers that may prevent them from accessing services and will meet for the first time on Saturday 24 February*.
The psychological thriller series, filmed and set in Wales, follows a young woman as she unravels her identity and hunts for truth in a remote community.
Daniel has Duchenne muscular dystrophy, which causes muscles to weaken and waste over time, leading to increasing and severe disability. The condition affects not only muscles used for movement, but also the heart and vital breathing muscles too, cutting lives short. He is one of a very few men in the country of his age to have the condition.
Lucy Frost, 38, whose son George Tappenden (age six) has SMA Type 2, went to Parliament recently (24 January) for Muscular Dystrophy UK’s first-ever Fast Track event. The event – held as part of the charity’s Fast track campaign – brought together people with muscular dystrophy, their MPs, representatives from the pharmaceutical industry and the National Institute for Health and Care Excellence (NICE).
However, charities are warning that unless Spinraza is quickly made available, some patients could risk losing the ability to crawl, move, breathe and swallow.
Nic Bungay, Muscular Dystrophy’s UK’s Director of Campaigns, Care and Information, said:
“This is disappointing news for the people with Duchenne muscular dystrophy who could benefit from Raxone. With no alternative treatment to help preserve respiratory function when steroids stop working, adults with Duchenne can struggle to cough and clear their airways.
While abusive tweets based on someone’s race, religion, gender or orientation are readily reportable in a dropdown menu on Twitter, disability is not listed as an option.
The only indication that hateful comments based on someone’s disability are unacceptable on Twitter involve clicking through several extra screens to locate the site’s 2,000-word rules, which include a single mention of it.
