January 2020

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Disability Rights UK (DRUK) – News In Brief   
To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us

In September 2019, Disabled Motoring UK (DMUK) published the results of their June 2019 survey on the level of abuse of Blue Badge parking spaces in Supermarket carparks.  These surveys have been run regularly by DMUK since 2002

SCAN wants to run similar surveys locally but needs help from volunteers to collect the data at Supermarkets locally. The survey period will be a minimum of one week. Date TBA once we have established how many stores can be included.

Questions will include;

  • How many Blue Badge spaces have been provided?
  • How many vehicles in the Blue Badge spaces are NOT displaying a badge?
  • Is there signage indicating that enforcement of the spaces takes place?

Please contact us if you are able to help with this survey and let us know the location of the Supermarket store that you will most likely visit to do the survey.  The surveys will not necessarily be restricted to just the ‘Big Four’ retailers.  Any of the ‘smaller’ retailers may be considered if they provide an ‘off road’ car park for their customers.

Visit the forum on our web site to add your responses at www.spelthorneaccess.org/forum/scan-blue-badge-parking-bay-abuse-survey.  Email info@spelthorneaccess.org.uk or text 07853 038933.

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.

Tesco, which partnered with Muscular Dystrophy UK earlier this year to roll out facilities at stores where there is the greatest need, is leading the way with 48 registered facilities and more due to be installed later this year and in 2020. Asda has registered seven, Sainsbury’s three, and Morrisons one.

Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, has also found that:

  • Less than 0.1% of retailers have a fully-accessible Changing Places toilet. There are currently 80 registered Changing Places toilets in supermarkets and other shops across the UK
  • Some of the UK’s best-known shopping areas don’t have a registered facility. The nearest to the world-famous Oxford Street, for example, is at Great Ormond Street Hospital, nearly two miles away
  • 40% of the top 50 ranked shopping centres in the UK do not have a registered Changing Places toilet. There are 92 Changing Places toilets in total
  • Some counties, including Bedfordshire and Lincolnshire, do not have a single registered Changing Places toilet in a shopping centre or shop. There are also no Changing Places toilets in any Greater London retailers

For the full article follow this link: www.musculardystrophyuk.org/press-releases/most-supermarket-chains-arent-providing-enough-fully-accessible-toilets-for-disabled-customers/

Between October 2019 and July 2020, a new multi-deck car park is being built on the site of the outpatients’ car park at St Peter’s Hospital. Parking has been a challenge on the site for many years and the new car park will help us to greatly improve the situation for patients, visitors and staff.

The car park will be completely closed during the works and there will be no access for drop off / pick up or parking (including blue badge parking) in this area during this time.

The overall number of parking spaces available to patients and visitors will remain the same. From 1st October you will just need to park in a different location and there will be signposting to direct you.

There will be three main parking areas:

  • The ‘Hazel Car Park’, previously used for staff parking is now dedicated parking for patients and visitors. It is located on the left-hand side as you drive up the road towards A&E. 
  • The top floor of the car park outside Abbey Wing will remain available to visitors.  
  • The small A&E car park will become parking for blue badge holders only.

There will still be 20 minutes free drop off in all of the visitor parking areas. All other charges will remain the same.

The entrance on Level 1 of outpatients will not be accessible whilst the works are being undertaken. The main entrance on Level 2 of outpatients will remain open with normal access for visitors however there will be restricted access for ambulance and taxi pick-up and drop off.

More information, including a map, is available at http://www.ashfordstpeters.nhs.uk/car-park-changes

NHS England announced in October 2019 that it has secured a definitive agreement to make available all three of their UK-licensed cystic fibrosis medicines.  This means NHS patients will now have full access to Orkambi, Symkevi and Kalydeco, and around 5000 people may now take up these treatments. There is no cap on patient numbers, and each and every patient in England who might benefit can now get these treatments, free on the NHS. Clinicians will be able to begin prescribing these drugs within 30 days.

Announcing the agreement, NHS Chief Executive Simon Stevens said: “The UK has the second highest prevalence of cystic fibrosis of any country in the world, so today is an important and long hoped for moment for children and adults living with cystic fibrosis.

“That fact also means that any drug company wanting to succeed commercially in this field needs to work constructively with the NHS.

Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, said: “We are pleased an agreement has been reached between NHS England and Vertex that brings these medicines to patients. It is also welcome that the company will now re-engage with the NICE process.

For the full article please follow this link www.england.nhs.uk/2019/10/nhs-england-concludes-wide-ranging-deal-for-cystic-fibrosis-drugs/

Parking charges in Surrey County Council’s countryside sites could be removed to help promote health and wellbeing, under new proposals.  It has been recommended to the council’s cabinet that the charges are stopped from 1 April 2020 as they don’t align with the council’s Community Vision to 2030 and the Health and Wellbeing Strategy.

The council will look to make efficiencies elsewhere in the council budget to cover the projected loss of income from removing the charges.

If the plans are approved, the council will investigate the introduction of a voluntary payment scheme, so visitors can still make a contribution to the upkeep and management of the countryside sites. Residents with season tickets would be refunded for any time after the charges have ended.

Note from the Editor: For any wheelchair users is Spelthorne who may have heard the news about a new provider for wheelchair services across Surrey from 1 July 2020, please note that Spelthorne is NOT included in this new contract….. yet!!

Richard Nicholson, Programme Director (Wheelchairs) has clarified that “Currently Spelthorne is covered by St George’s Wheelchair Service from Queen Mary’s Hospital at Roehampton via a contract managed by Merton & Wandsworth CCGs so is excluded from the Surrey Wheelchair Service contract. That said, we have contacted Merton & Wandsworth CCG(s) to ascertain when that contract is due to end with a view to Spelthorne service users being picked up through the Surrey contract in the future once their current contract expires.”

As soon as SCAN is informed of know of any changes with the current contract covering wheelchair services, we will publish details.

HOW THERAPY PETS CAN HELP CHILDREN IN NEED – Edited from article by Mary Carter in The Independent December 2019   
Whether they are fluffy or furry, studies suggest that contact with animals has significant benefits for the mind.

Ben* is a young resident at one of Calcot Services for Children’s (www.csfc.co.uk) residential care homes called The Lodge. The homes are based in Berkshire and Hampshire. Each of the homes uses pet therapy to help the children heal emotionally and emerge into the world more confidently with a greater degree of trust in others.

Ben*, a shy child who couldn’t bear the gaze of another human, whether child or adult, was smiling for the first time anyone knew. But, now, he was slowly but most certainly and surprisingly coming out of his shell as he reached forward again to caress the tufty mane of Lola, a five-year-old alpaca.  His eyes sparkled as Lola bobbed her head towards his arms looking for more affection. Ben gazed lovingly at Lola and told her she was a ‘good girl’. Weeks later he started to trust his surroundings more and even started to speak to people, other children and adults too. He opened up and started healing and learning to live life on life’s terms.

Another organisation, the charity Parent and Child Together North East (www.pactne.co.uk) a supported housing project for vulnerable families, based in a semi-rural location on the edge of Darlington, County Durham also deploys animals in therapeutic ways. The families who live there are vulnerable for a variety of different reasons, including challenging home lives. The charity provides comfortable family homes and support includes parenting training, counselling, advice and guidance, and recreational and occupational activities. They live in well-equipped wooden cabins and enjoy plenty of space and fresh air as well as the company of goats, alpacas, chickens and a dog.

Mick Sutcliffe, operations manager of the project, says the families all enjoy the company of the various animals but it’s the dog (a rather portly schnauzer called Schubert) who has the most therapeutic impact on the families. “Everyone knows him, plays with him, talks to him ... and feeds him,” he says.

Whether a dog, goat or alpaca, the unconditional love and companionship of an animal can bring enormous therapeutic benefits. The remarkable journeys of the children and young people in the care of organisations that are investing the time and other resources in mining this rich therapeutic seam are surely testament to that.

Marie Carter is the Editor of Pets Magazine (www.petsmag.co.uk), a digital magazine for pet-owners.    

A swimming programme for those with physical or mental impairments is now available at Surrey Sports Park in Guildford and Tandridge Leisure Centre, thanks to Active Surrey and a Surrey-based trust.

The sessions are designed to be sociable and everyone is made to feel welcome with swimmers aided by personal care and in-water volunteers including a physiotherapist. All swim abilities are catered for and attendees can enjoy as much time in the pool as they like.

If anyone would like to join one of the Dolphins Swim Scheme sessions as a participant or volunteer please get in touch with Cliff Bush 07752 054370 or email cliffbush51@gmail.com

Disabled people and carers, who use any technology to aid independence and wellbeing may be interested in joining a new virtual group.

Talk Assistive Tech Group or TAAT will meet every eight weeks.  During meetings, members can share their thoughts and knowledge about technology to enable learning from each other.

Meetings will be conducted using ‘Zoom’ technology and people can either join in from a video call using a smart phone, tablet, computer or audio by phone.

For More information please contact Surrey Coalition: Email: info@surreycoalition.org.uk  Phone: 01483 456 558, Text: 07780 933 053 Online: https://surreycoalition.org.uk

CHALLENGING HEARING LOSS STEREOTYPES – Edited from booktrust.org.uk November 2019    
Comedian and author Samantha Baines has written a super-fun adventure for children (Harriet Versus the Galaxy), with a character (Harriet) who happens to be hearing impaired – and with a hearing aid that proves to be a bonus!

Harriet discovers that her hearing aid translates alien languages when she finds a creature from out of space under her bed. Harriet uncovers a few more surprising things too and is charged with protecting the planet from the Munchas, who eat things like socks, pens and, even, knickers!

Samantha Baines was just 30 when she noticed a peculiar whooshing noise in her ear. An actress and stand-up comedian, Baines first heard the sound at the Edinburgh Festival Fringe in 2016.  “It was like a whirring noise or a tiny animal rustling around. Following months of anxiety I went to the Doctor and was told I had tinnitus. I think it's so important that all children see themselves represented in books. When I discovered I needed hearing aids, I was an adult. Even so, I felt alone and "other", like it would hold me back in my career and social life. In contrast, three years on, I can honestly say that getting a hearing aid is one of the best things that ever happened to me. Sometimes out of challenge comes the most incredible people and experiences. I have realised that myself and I wanted Harriet's story to represent that, too”

I think it's so important that all children see themselves represented in books. Sometimes out of challenge comes the most incredible people and experiences. I have realised that myself and I wanted Harriet's story to represent that, too.

Being an ambassador for both Action on Hearing Loss and the British Tinnitus Association has been incredible, and I have got to meet so many people who have had similar experiences to mine. But adults were always asking me if I could recommend any books or films for children that mentioned hearing loss. I personally couldn’t list any, so I decided to create one.

It was so important to me that Harriet's hearing aid doesn't hold her back. It's actually a bonus. I wanted the book to be a fun adventure that everyone can enjoy first and foremost with an awesome little girl with a hearing aid and her non-binary friend who aren't defined by being "different". They are defined by their personalities and skills in saving the planet.  

DISABLED WORKERS PAID LESS PER YEAR THAN OTHER WORKERS – Edited from The Independent November 2019    
Disabled workers are paid 15 per cent less than other employees, a gap of around £3,000 a year, a new study suggests.

According to the analysis, disabled workers earn on average £1.65 an hour less than non-disabled workers. People with disabilities are also less likely to be in work, facing barriers to accessing employment, said the union organisation.

Around half of disabled people are in work, compared to more than four-fifths of non-disabled people, a gap of almost 30 per cent, said the TUC.

The TUC said its research indicated that disabled people effectively work for free for the last 57 days of the year, so they stop getting paid from today.

General Secretary Frances O’Grady said: “Everybody deserves a fair chance to get a job with decent pay. Being disabled should not exclude you from choosing to work, and it should not mean you are put on a lower wage.

James Taylor, of disability equality charity Scope, said: “Everyone should be doing their utmost to close this gap as quickly as possible.

“One million disabled people want to work but are denied the opportunity.

“The next government must commit to halving the disability employment gap, which has been stuck around 30 per cent behind for over a decade.”  

BEN ELTON’s ADMISSION ABOUT THE ABLEIST SLURS IN ‘THE YOUNG ONES’ 30 YEARS AGO – Edited from article by Ben Elton in The Independent November 2019    
It’s hard to believe it’s been 25 years since Scope, the disability charity, got its new name. Particularly when you think about how much has been achieved since that very proud day in 1994, which I was honoured to be a part of.

That name change meant a lot to me. It was part of the steep learning curve which I’d been on regarding the casual prejudice and discrimination disabled people experienced on a daily basis.

Of course, I cringe to even write this now and the only plea in mitigation I can offer is that my intention had been that the joke would be on the character of Rick, which was so brilliantly played by the late, great Rik Mayall. I had hoped that he’d look a fool for offering such a tired and witless playground insult as if it was some brilliant Oscar Wilde-style put down.

The letters I received from the parents of kids with cerebral palsy opened my eyes to the reality of what I’d contributed to. The Young Ones was hugely popular with young people at the time and was much quoted in the playground. In our wretched naivety and thoughtlessness, Rik and I had legitimized the use of the word “spastic” as a term of abuse. Any satirical subtlety that I’d hoped for had been lost in the thoughtless cruelty of the playground.

Words matter and language has consequences. You’d think that I, as a writer and a drama graduate, would have known that. But – as I have learned over the years – there really is no limit to the thoughtlessness (often well-meaning) that non-disabled people can show to disabled people. In writing that line in The Young Ones, I proved that I am no exception to that rule.

The upside of this story was that, a few years later, I was able to use the experience in my second novel Gridlock, which featured two disabled people as its heroes. The whole novel was in fact inspired by a chance encounter with a young man who had cerebral palsy. I only met him once, and I’m not even sure I ever even knew his name, but he helped to further open my eyes to my own unconscious prejudice and in doing so, he planted the seed of one of my most successful novels. I wonder if he’s reading this and recalls the encounter? If so – thank you brother! I owe ya!

I started imagining a brilliant mathematician whose cerebral palsy led people to making the fatal mistake of underestimating him! Geoffrey, the campaigning eco-scientist of Gridlock was born.

While writing the novel, I thought and read a lot about disability and continued to think about all that underestimated potential. I got so enthused about it that I made the other hero of the book a young woman who has paraplegia. The story was about traffic-induced urban paralysis (Gridlock!) and I figured a girl who had to deal with the issue of urban mobility every second of her life, while fighting to have access to the stuff the rest of us take for granted, might prove a fittingly astute and inventive comrade for Geoffrey.

The other result of that stage door meeting was that I decided to join what was then called the Spastics Society. I wanted to lend my support to disabled people in any way that might be useful, and I also knew that I would personally learn and grow from the experience.

My association with the charity has taught me so much about that power. Language defines attitude and all too often disabled people are held back by negative attitudes in all areas of life, including work, education or just trying to have a decent night out.  That needs to change. And part of that change means putting our hands up and recognising where we’ve made mistakes, and then doing something about it. That’s why I’m sharing this with you.  

YOU DON’T LOOK SICK: ‘I WON’T LET HAEMOPHILIA DEFINE ME’ – Edited from metro.co.uk November 2019   
There are 13.9 million disabled people in the UK – and many of them have an invisible illness. Metro.co.uk publishes weekly stories about living with an invisible illness or hidden disability.

Paul Stephens, 18, from Surrey, was diagnosed with haemophilia A when he was born. It is a rare genetic bleeding disorder, which means he lacks the factors responsible for blood clotting. It means that he bruises easily and can bleed excessively if his skin is cut. He can also bleed from joints and muscles because of a contact injury and this can cause pain and swelling.

But Paul has never let his condition hold him back. He tells Metro.co.uk: ‘Haemophilia doesn’t define me as a person. I’ll always define myself and who I am.’ Paul’s older brother also has the condition so when he was born, doctors tested for it straight away. He says: ‘I’ve never known any different. It’s always been a part of my life. I feel like I was just a normal kid and I just always wanted to be active. I never really thought about it. ‘I knew I couldn’t do contact sports like rugby but it never really interested me anyway.’

Paul has injections every other day to help the levels of factor VIII in his blood. Without the injections, the level in Paul’s blood is under 1%, while in someone without haemophilia, it is at least 50%. The injections help to raise the level of factor VIII and helps his blood clot properly. If he has an internal bleed because of an injury, he needs to take an extra dose of his medication.

The bleeds cause him a lot of pain and sometimes it has been so severe, he has gone to hospital thinking that he has broken a bone. He explains: ‘It can be confusing and sometimes I need to go to hospital just to check it out and figure out whether I’ve broken it or it’s just another bleed.’

Growing up with the condition, Paul has had a lot of support from his family and they have always encouraged him. ‘I’ve had lots of people helping me,’ he says. ‘When I was younger, I had a great haemophilia centre and that is part of the reason why I am quite independent.

 Paul went to a cricket college for two years and hopes to continue playing at a high level now he has finished. Throughout his cricket career, he says he’s only told people that he feels need to know about the condition because he doesn’t want them to treat him any differently. He says that when he does tell people, they often say ‘You don’t look sick’ because he is young, fit and looks healthy.

He says: ‘I know most people would have no idea unless they have seen me have a bleed or something. The condition is invisible to most people. ‘It can be really difficult to get people to understand’ Paul is part of the Why Sit It Out - www.whysititout.co.uk campaign by global biotherapeutics leader CSL Behring, to raise awareness of the benefits of exercise for those living with haemophilia.

He feels it’s important to show that those with the condition can still take part in sports and stay active. Paul explains: ‘I know other people with the condition who aren’t very active and they have a lot more problems with their joints. ‘I wanted to show that you can be active and that it can be a huge help for your body, and mentally too. ‘There are some things you can’t really play but there are loads you can.’

He also feels that the campaign is important to highlight invisible illnesses and to show that not every disability is visible. He says: ‘We need more things on social media and the internet to educate people about invisible illnesses. ‘The more educated people are, the more they’ll understand that just because you can’t see a condition or disability, it doesn’t mean that person doesn’t need some help.’    

An edited version of a sketch by blind comedian Reece Finnegan. He performed this true story for the BBC at the Edinburgh Festival Fringe in August2019 where the theme was Lost and Found.

“Being lost is pretty integral to being a blind person. You name it, clubs, Tube stations - I've probably been lost there. On this occasion, it was my new boss's house after a night out and I needed to find my way home. I woke up hung-over, in an unfamiliar bedroom. I had none of my possessions on me, except for a dead and useless mobile phone.  All I could remember, from the night before, was going for drinks with my new colleagues.  After visiting a couple of bars, my boss's son, Jay, invited us back to his Dad's house in London's Kensington.

To give a bit of context, waking up in a strange house when you can't see is scary and disorientating. You literally have no idea what's around the next corner.  Well, this house was huge - four floors and tonnes of rooms. Trust me, finding your way out of a disabled toilet without feeling up the changing table is hard enough, let alone escaping a house spread across multiple levels with lots of walls in the way.

When no similarly hungover colleagues materialised to provide me with help, I decided to take things into my own hands.  I got out of bed and found a door - an en-suite bathroom. After sitting on the loo for a couple of minutes I heard an unfamiliar woman's voice.

"Reece, it's Jay's mum. Jay told me you were staying I was just wondering if you need anything?"

As a blind person, you learn to accept help when it's offered, because you never know when it will next come your way.  Unfortunately, I was so shocked to hear a voice so close to me mid-toilet break that I hastily replied: "I'm fine thanks".  Once I'd pulled my trousers up, I felt around for a sink, and was surprised to find another door to the bathroom - but it was opposite to the one I'd come through.  It was a second door, a door which had been open the whole time. With dignity at an all time low and with nothing left to lose I decided to try and find my belongings.

Beyond the bathroom I found a hallway, a labyrinth with loads of doors leading off and I started to feel my way along it.  Eventually I found a banister sloping downwards. I congratulated myself on this relatively smooth run as I reached the top of the stairs, then clang! I knocked into something huge and metal that turned out to be a terrifying suit of armour propped up against the wall.

A couple of wobbly vases later and I decided to retreat back to the original bedroom I'd woken up in - but I'd somehow gone too far. In trying to retrace my steps, I'd found myself in a completely different part of the house with new corridors and new doors. Then I heard a noise. I started to panic - I didn't know who it was and I didn't have my white symbol cane which lets people know I'm blind.

I discovered it wasn't a person, but a cat.  The miracle creature brushed past my leg and led me down a new corridor. It had a cute bell on its collar so I was able to follow the sound it made.  Somehow, someway, this wonderful animal led me straight into the kitchen. There, a housekeeper greeted me and pointed me to my stuff on the kitchen table - bag, charger, cane - I almost collapsed with relief. I grabbed the charger, charged my phone, and got out of there as fast as I could. For the full version of the sketch follow this link  www.bbc.co.uk/news/disability-49347026