Accessibility Day at Gatwick Airport – Air Travel with Chronic and Invisible Illnesses

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Last month I was fortunate to be invited to attend a special day at Gatwick airport to receive information about the Accessibility plans that are in place for travellers.  We – hubby and me – joined a small band of fellow EDSers (Ehlers Danlos syndromes) and other families with mobility issues, autism, Alzheimers and various “invisible” chronic health problems in order to experience “a practical overview of airport processes before actually travelling”.

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Travelling can be a stressful experience at the best of times, but add a disability/special need/illness into the equation and this stress is magnified 100 fold.  Accessibility issues affecting wheelchair travellers have recently hit the UK national press with the stories of BBC journalist Frank Gardiner and athlete Justin Levine.  Each man arrived at his destination to find that his own wheelchair had been lost, resulting in Mr Gardiner sitting on the plane for an additional 90 minutes after landing at Heathrow and Mr Levine rejecting offers of an attendant wheelchair at Luton.  Whilst Gatwick and several other UK airports have previously run Accessibility days, this particular session could not have been better timed in order for the airports to improve Accessibility profiles.

Landside

Each family was allocated a time slot and we were met at the Virgin landside airline desks where we  were checked in and given the recently launched sunflower “hidden disability” lanyards.  The distinctive green and yellow lanyards are to allow staff to easily identify travellers who may need additional assistance, but might not have an immediately obvious disability.

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Chronic pain, autistic spectrum disorders, Alzheimers and dementia, fibromyalgia, chronic fatigue syndrome, Ehlers Danlos Syndrome, IBD/Crohns/Coeliacs, mental health disorders are just a few of the many conditions that might benefit under this scheme.  Members from both the police dog handlers and the border patrol were present to welcome us but it was  their beautiful dogs who stole the show.  Eighteen month old springer spaniel pup Gracie was a personal favourite of mine!

Do you know that there is an Accessibility and Families’ check in and security?  The whole process for the average traveller has changed so much in recent years and it can feel that everyone is wanting to check in at a million miles an hour……electronic check in from home, travelling with hand luggage only, business travellers wanting to get from A to B in the least time possible.  How does it feel if you take a little more time than the average person, if your child doesn’t understand what is happening, if anxiety turns into a panic attack?  We were assured that the Accessible and family security can be used for anyone who needs a little more time, space and understanding.  I wonder how many of you have used this facility?  Please share your experience!

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Pictures courtesy of Maria Cook

Last weekend Virgin airlines and Easy Jet were our hosts for the day, but I believe that other travel providers have played the host role in different locations around the country.  This was my first time to go through airport security since having my spinal cord stimulator implanted for pain control and in the same way that I am not able to go into an MRI scanner, the magnetic fields in the security scanners prevent me from going through the arch.  Like a pacemaker, the magnets in both devices would cause damage to my battery/programmer needing surgery to remove and replace the device.  I carry a medical alert card like others in my position and whilst my condition is now “visible” due to my wheelchair, for many with chronic pain and a similar implant, it would be impossible to see their chronic condition.  The security staff responded well to my needs and as hubby put my bag on the scanner and took himself through security, I was taken round the other side of the scanners and whilst remaining in my chair, a female office carried out a simple body search.  I passed and didn’t set off a single alarm!!

Airside

First stop – the “V” room.  This is Virgin Holidays’ new lounge in the North terminal which is for the use of Virgin customers booking a Holiday/Flydrive Package – it can be pre booked or booked on the day for each passenger.  We were treated to hot drinks and a tour from very attentive staff who are eager to please and answer queries.  I know that this is part of their jobs, but we were impressed by the welcoming demeanour, general knowledge and the care shown to us.  

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If you are not on a Virgin package or do not wish to pay to book the lounge, Gatwick North terminal has a newly opened Accessible “Quiet” lounge area located within the departures lounge and shopping area.  Here it is possible to sit in more comfortable seating, away from the crowds with screen information to monitor your flight and yet still be close to the amenities and eateries in the departure lounge.

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Fellow zebras taking advantage of wheelchair assistance!

I was using my own wheelchair and pushed by hubby, but there are many of you who don’t normally use a chair, yet walking through the airport prior to boarding your plane is just exhausting.  If you give the airport notice – 48 hours – it is possible to be helped by staff with a wheelchair, as some of our group did for their tours, or to make use of one of the accessibility buggies that you will have seen speeding through the airport.  My advice – don’t be too independent and insist on walking if this burns you out before even setting foot on the plane.  I have always been the world’s worst for doing this, but accept now that pride really can come before a literal fall!

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We were taken to the Sensory room next – the first area of its kind in a UK airport.  It is well recognised now that special sensory lighting, music and surroundings can greatly enhance senses and communication for a wide variety of sensory abilities.  My limited experience (when nursing) brought me into contact with such areas in children’s hospices and hospitals.  A room of this type can be extremely helpful for both children and adults with autistic spectrum disorders, physical and mental disabilities – I include dementia and Alzheimers here.  The room is airside and only for use by those passing through security – a 45 minute session can be booked at the special assistance reception in the departures lounge.  On the day youngsters in the room appeared to be having a great time, but there were few adults with disabilities when we had a quick “peek”.  There is a variety of soft play cushioning and this is geared towards those able to sit on cushions and beanbags. It is important to book ahead as there is an 8 person limit.  I think that the premise is fantastic and it is a very welcome addition to the airport experience – suggestions to add to this are:

  • for a further focus on use by adults;
  • to create wider aisles between the soft play areas for wheelchair access – the space is limited; 
  • to consider how different groups might relate to each other – adults, children, physically disabled, autism spectrum disorders, etc;
  • to ensure that the knobs and buttons on the activities are able to be accessed by those with hand problems;
  • to consider in the future expanding the existing room or have several sensory rooms to cope with the high demand that the facility will undoubtedly have!   Disclaimer: Please note I am not an expert and do not have autism

For someone like me who struggles with walking and stairs, the thought of using steps up to a plane is akin to climbing a mountain.  It is encouraging to know that if an aircraft is using steps rather than a jetty boarding system, Gatwick airport has a fleet of German Bulmor transporters that wheelchairs can be strapped into and lifted via a hydraulic arm directly to the door of the plane.  This allows the passenger entry to the plane in their own wheelchair to then transfer directly into their plane seat.  We enjoyed a short ride in the Bulmor and the experience of the cabin lifting and lowering, all whilst I sat in my chair.  For younger members of the party there was an opportunity to board the huge airport fire engines and to have a go at operating certain controls.

 

 

The part of the day that I was most excited about and also feared was boarding the plane – my greatest anxiety over the years has been the thought of feeling trapped in an aircraft seat and my back pain becoming uncontrolled.  I can move when seated on my sofa, in a restaurant or even the cinema, but sitting in a car or a plane is a different story.  Unless you have experienced chronic nerve pain, it is difficult to explain what may seem to be an irrational fear of an exacerbation of this pain and being unable to do anything about it.  I was able to remain in my seat up to the doorway at which point I got up from my chair and transferred into one of the first rows on the plane.  The Easyjet cabin crew were keen demonstrate that they can offer assistance and a comfortable flight to any passenger with accessibility needs. 

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Whilst hubby chatted with the pilot in the cockpit……

I was told about booking my seat in advance – it is advisable to pay the extra to select your seat for leg room, the aisle, to be near the loo etc etc – alerting the airport and the airline of your needs 48 hours in advance, and that my wheelchair would be stored in the hold after I have transferred to my seat.  Tip: take your seat cushion onto the plane as it is likely to be lost in the hold! The loss and damage of wheelchairs has been in the media recently and is a very real concern for many wheelchair users – one lady cited the issue of “which end of a flight did the damage occur to her chair?” as no one would take responsibility.  No easy solutions to this one as yet.  The current policy is for accessibility passengers to board the aircraft first, in order to have time to settle and as much assistance as needed without the stresses of other passengers.  Once in the seat there is a small onflight wheeled chair (similar to a fire chair) for those needing assistance to move about on the flight, go to the loo etc.  I did find the seat comfortable and was in the area with more leg room – I don’t believe that I or others with EDS/chronic pain/arthritis/ fibromyalgia etc would manage with less leg room and the angle of the back of the seat is very important too.  The new EasyJet seat backs are fixed and I am pleased to say that they are not in a too upright position, but I would be unable to manage in a fixed seat that was very upright as my SCS would be cut off due to the position in my spine.

I asked about facilities at destination airports and the staff were very honest.  Apparently there is a European standard for Accessibility arrangements but they are open to interpretation and this means that they will vary from airport to airport, country to country.  This is obviously the case when flying elsewhere in the world too, so the best advice that I can pass on here is to fully investigate your holiday plans, journey and the accommodations made at your destination prior to any bookings!

EasyJet have an Accessibility and Assistance manager, Celine McGuigan who is informative and very keen to make airport travel accessible to all.  She is also notably keen to understand the needs of the Accessibility community from those with very visible disabilities to invisible problems/illnesses – in fact she has made staff, including those at a senior level, spend time in a wheelchair in order to focus minds on accessibility issues!  The young members of cabin crew are also to be commended for their knowledge and enthusiasm to help without ever being condescending or frightened to ask me questions. 

Feedback from the visit:

  • just how accessible are the aircraft toilets?  They are very small and is there room for the small wheelchair and a helper to assist with a transfer?  (I am aware that this is an area up for discussion around the design of both aircraft and trains);
  • people with allergies, mast cell activation syndrome and similar can be very sensitive to scents – some have experienced problems with the scents used to refresh the cabins and I know that the staff were going to look into this matter;
  • for staff to be aware during a flight that with conditions such as EDS, joint pain and cramps are a common problem and the passenger will undoubtedly need to stand and stretch;
  • for many the standard seats do not provide sufficient room, yet the seats with more “leg room” can come at an extra cost which can be difficult to swallow for those on an already reduced income and/or families with young children
  • I know that they have been in the media, but to continue to highlight the accessibility lanyards and the fact that many adults and children with “invisible” conditions will be using them; work with the community who will be using them and listen to feedback regarding wearing a lanyard and the design.

I can only congratulate all the staff involved for such an informative and practical day at Gatwick airport.  More of these days across the country would be a huge benefit to so many people and the comments that I have seen from other groups have been very positive. My own fears have been put to rest and whilst I am under no illusions that air travel for me personally will remain tough and very tiring,  and of course I still have some concerns, I do now think that I can do it. 

So come on hubby….where are you taking me?!

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Photo courtesy of Dan McKenzie

Please note this has been written from my personal perspective

Book Review “The Girl at the End of the Road”

Disclaimer: I was fortunate to be given a copy of this book by The Book Club on Facebook in exchange for a fair and honest review.

The Girl at the End of the Road by K A Hitchins

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Vincent has found himself in a situation that any self-respecting “City” boy would balk at.  He has lost his job, his rented home, possibly his high maintenance girlfriend and perhaps most humiliating of all, he is on his way home to his parents’ house in Suffolk.  Rural Suffolk.  At this point in his life, a decade or so after leaving school, he did not expect to find himself becoming reacquainted with his childhood bedroom or learning how to live with his loving, but in his eyes, staid middle aged parents.

But he is clear in his own mind that this is just a temporary glitch.  The downturn in the economy and his huge personal debts will not hold him back.  However adjusting to life in the rural village of Elmsford proves hard for Vincent, who assumes himself to be a city hotshot.  There is no immediate access to internet, the job offers that he expected to flood in are nowhere in sight and his social life is virtually non-existent – unless you count dog walks with his parents’ elderly dog.  A trip to the local library brings him face to face with a memory from the past in the shape of librarian Sarah Penny.  Having run into this old school friend once, he finds himself encountering her on dog walks and then actively seeking her out.

So begins what initially seems to be the most unlikely of friendships.  Sarah is the antithesis of friends who have featured in Vincent’s life as she is serious, quiet, slightly dowdy and happy to be in Suffolk.  She is certainly unlike the city girls who dress and make up to the nines, expecting champagne fuelled dates and expensive accessories.  Sarah, in her almost simplistic view of the world, makes Vincent accept some unpleasant truths about himself and his attitudes to life.

The story could be very clichéd, and at first Vincent is a pretty unlikeable character.  But it was with real interest that I watched his character evolve from spoilt young man to something altogether different.  Maybe there is an element of fairy tale to this, but as Vincent grows so does Sarah and the reader begins to have a glimpse into a simple world of an exceptional young lady.  I don’t want to give any spoilers, but I believe that there is enough already written about Sarah’s autism not to be giving anything away.  I am not autistic so do not pretend to have any inside knowledge about this complex condition.  But I do belong to a community of chronic illness sufferers, some of whom are on the autistic spectrum and I have recently read articles by author Laura James, who has autism and my own condition, Ehlers Danlos Syndrome.  I feel that Sarah’s autism, which included her extraordinary intelligence, has been handled sensitively and with relevance to real life.  For instance, her coping mechanisms at dealing with life following her mother’s death and her growing relationship with Vincent.

This book made me think, made me sad and in parts made me laugh out loud.  Perhaps most importantly it made me examine my own attitudes to those we consider to be different to ourselves and also those closest to us.  In my disability chronic illness community we call ourselves “spoonies”, in the book Sarah and her friends call themselves “The Specials” – a fantastic name.  Of course there is a moral to the story for Vincent regarding what in life really makes you happy…..and sometimes you are unable to see it for trying too hard.

For me a great read, with a long review, but 5 stars all the way!