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The hidden disability Sunflower Scheme

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At a time when people have to wear facemasks, and it is seen as antisocial not to do so, what about those who can’t wear them for medical reasons?

Although one person in five has a disability of some sort, most show no outward sign of it. This can mean they have difficulty obtaining help when they need it, and they can attract complaints, even abuse, from people who don’t understand. Polly Rivers looks at several schemes to combat this problem.

Up and down the country, on social and mainstream media, there’s a hot topic that is dividing the nation. Face masks. Whether you’re in the camp of lifesaving PPE, or an unnecessary faff, there is no disputing the fact that making the decision NOT to wear a mask is a bold and brave choice.

However, for many, the decision not to wear a mask is not a political one. They have a legitimate invisible medical issue, and, for millions of people across the UK, these hidden disabilities can leave them open to negativity from the public.

It’s estimated that one in five people in the UK have a disability, 70 percent of which you may have no idea about. Many hidden disabilities don’t have physical signs, including learning difficulties, mental health, mobility, speech, visual or hearing impairments, asthma, epilepsy, COPD (chronic obstructive pulmonary disease) and other lung conditions, as well as chronic illnesses such as renal failure, diabetes, and sleep disorders – all of them serious conditions that impede the individual’s day-to-day life but may display little to no visible signs.

However, last month saw some really positive news for people living with a hidden disability. In a statement released by the Rail Delivery Group, it was announced that every train operating company across England, Scotland and Wales has signed up to the Sunflower Scheme, a nationwide project that is designed to improve recognition of the needs of people managing hidden disabilities and offer help or assistance accordingly.

Planting the seed

Started at Gatwick airport in 2016, the Sunflower Scheme was designed to provide people suffering from a hidden disability with a discreet way to signify to others that they may need a little more time or assistance in certain circumstances, such as working their way through a busy airport, for example.

The scheme quickly spread, from that one airport, throughout the transport network, and scheme CEO Paul White credits this sector with much of its success to date.

“The Sunflower Scheme started at a UK airport, and spread quickly to the rail sector as people got off planes and onto trains!” he explained. “Being embraced by the transport industry has helped it move quickly around the UK, and we’re delighted that it is now recognised up and down the country, and even abroad – as well as the rail network, all UK ports support the scheme, and their foreign counterparts, as well as many international airports.

“We hear every day how the scheme has empowered people to go out to different places, be brave enough to travel and try different things, because they now feel supported, simply because they are wearing a lanyard around their neck! It’s a really positive message.

“All of the businesses that support the scheme have helped those people feel supported and empowered to go out and do things that they haven’t done before.”

The first train operator to join the scheme, back in April 2019, was LNER, which, in just over a year, has handed out over 10,000 Sunflower lanyards to passengers needing a little extra assistance with disabilities such as autism, dementia or visual impairment.

With over 50 colleagues trained as Sunflower ambassadors along the 936-mile East Cost route, LNER has set a high standard for colleagues in the industry to follow.

Claire Ansley, LNER’s customer experience director, said: “Our customers are at the heart of everything we do. We want to make it as easy as possible for people to travel with us and for customers to have the best possible experience.

“For people with hidden disabilities, it understandably can be an unnerving experience travelling on public transport. We’re delighted that there has been so much support for the Sunflower Lanyard scheme. We hope we can continue making journeys more comfortable for many more customers and wish to develop the scheme further to enhance their experience.”

Preparing the nation’s stations

With so much at stake, it is vitally important that teams on the ground are prepared for exactly what is expected of them.

“Where the scheme falls down is if someone turns up at a railway station that recognises the scheme and somebody there says: ‘I’ve never seen this before’, and doesn’t offer that person any support. Consistency is key in the ongoing positivity for the scheme and it’s users,” Paul White stressed.

With this in mind, preparation has been key to ensure that, as lockdowns lift, and we see a return of passengers to the railways, their journey will be as seamless as possible.

Passengers will now be able to pick up a Sunflower lanyard or card at participating ticket offices across England, Scotland and Wales. There is no list of hidden disabilities that allows someone to ‘qualify’ for a lanyard or card. Having a lanyard doesn’t entitle the wearer to financial gain, or the ability to queue jump – it just means that they are asking for a little extra time, and maybe some help if and when they may need it. With such a spectrum of conditions to be covered, operators are following LNER’s lead and ensuring fully trained staff are available along all routes to provide extra help, time or assistance when needed.

“We want the railway to be accessible for everyone,” said Robert Nisbet, director of nations and regions at the Rail Delivery Group.

“The Sunflower Scheme can help people with non-visible disabilities feel more confident asking for assistance, whether that’s to buy a ticket, find their way or get reassurance that the next train is theirs. Passengers returning to train travel after lockdown will also benefit from wider staff training to improve disability awareness and the 8,000 new, more-accessible train carriages we are introducing by 2025.”

The increase in accessible carriages is part of the Safer Travel Pledge, a document published by operators designed to ensure that passengers are able to remain safe on their journeys as more people return to travelling on trains following lockdown. The document includes requirement for both operators and passengers, including guidance on how passengers should maintain personal safety at all times, and the steps operators are taking to ease the COVID-19 fears. These include 2,500 additional staff at key locations to help passengers, as well as an increase in accessible rolling stock. Staff are also being given additional support as to how to support passengers with additional needs in light of the coronavirus.

Masking the fear

With many Sunflower Scheme users falling under the category of vulnerable under the COVID-19 restrictions, the scheme is undoubtably great news, but many may still have concerns for safety whilst travelling.

As shielding requirements have lifted (for the moment), many people are taking tentative first steps out, only to be met with a fearful reaction from the travelling public if they are not seen to be keeping exactly to the rules.

“Since coming out of lockdown, the Sunflower Scheme has become even more prevalent for many people, based on the fact that so many people are now going out and there’s a lot of scared people, unsure of what they can and cannot do. The scheme seems to be empowering people to be able to go out, because they are able to show that they have a hidden disability and may be exempt from certain requirements,” Paul White explained.

“Many users of the scheme are face-covering-exempt due to their condition. Being able to demonstrate a distinct reason as to why they are not allowed to wear a facemask allows travellers to get, not exactly sympathy, but at least awareness and understanding from other people, so they won’t be judged.”

Accessibility (and Rail) Minister Chris Heaton-Harris, commented: “Our railways must be open to everyone, and the Sunflower lanyard is a brilliant initiative to help passengers with non-visible disabilities travel with confidence across the rail network.

“As restrictions ease, and more and more people gradually return to the railway, it is more important than ever that we consider those around us when we travel by train. That includes passengers with non-visible disabilities who may be exempt from wearing a face covering.”

What has taken so long?

Whilst the rollout of the Sunflower Scheme is undoubtably fantastic news for the travelling public, and boosts the industry’s awareness of hidden disabilities, it is not the only scheme out there that tackles this silent issue.

Launched in April 2017, TfL’s ‘Offer Me a Seat’ scheme allows passengers who are less able to stand on journeys to apply for a badge and card which allows them to access a Priority Seat if one is not available. There is no definite set of criteria that passengers must meet in order to be sent a badge – like the Sunflower Scheme, TfL’s system is based on trust, much the same as it’s famous ‘Baby on Board’ badges for pregnant women.

The JAM card, short for ‘Just a Minute’, is a similar principle to the Sunflower Scheme. It is also becoming popular, largely, in part, to being able to be used in app format – a handy tool for the digital age. Trialled by Southeastern back in October 2019, alongside the Sunflower Scheme, the JAM card is aimed at people who may find communicating tricky, may have a learning difficulty or autism, and want a completely hands-off way of highlighting their condition and signalling that they may need ‘Just A Minute’ longer.

The app also gives users the opportunity to review the service, find other ‘JAM’ registered businesses in the area, and keep up to date with the latest news.

In Scotland, thirteen-year-old Grace Warnock, who has Crohn’s Disease, often faced criticism from strangers when she used accessible toilets. She came up with the idea of a sign on disabled toilet doors that included both a person in a wheelchair and a standing person with a heart, symbolising people with invisible conditions.

Grace’s Sign, often with the added words “not every disability is visible”, is now a familiar sight in some parts of the country, in ScotRail stations and even in the Scottish parliament building.

Turning towards the light…

“We all have busy lives – it’s often difficult to slow down and take a breath,” Paul White concluded. “Living with hidden disability can make life painful, exhausting and isolating, and it’s difficult to notice that, because it’s invisible.

“People I know with hidden disabilities don’t want sympathy, but what they do want is understanding.”

There is no doubt that 2020 has created the need for many changes, but, with the mayhem of coronavirus forcing the industry to tackle longstanding challenges head-on, who knows?

For some passengers, the rail sector may be a far more welcoming prospect than it once was. And that’s got be good news.