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

Accessibility pin

 

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.  

V lounge

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?!

Aircraft
Photo courtesy of Dan McKenzie

Please note this has been written from my personal perspective

Monday Magic – Inspiring Blogs for You!

It is nearly Tuesday and I have almost missed Monday Magic – probably as i spent large parts of the day putting together 3 collages of old photographs for a dinner/reunion for next weekend.  We are celebrating 40 years of co-education at my old school and as one of the original 8 little girls to start the school, and as a member of the alumni committee, it seemed like a good idea.  But it took me a lot longer than I expected – what a trip down memory lane though, looking at the various photos sent to me!!

Monday Magic Venice

So without further ado or chat about the happenings in our household this week, I will launch straight into the blogs that I have been enjoying.  There are several travel posts including a fantastic visit to a bookshop in Venice, and if space travel is your thing then you must have tuned in to the new series of Doctor Who along with Hugh (Hugh’s Views0 and the PainPals house.  The first female Doctor is a hit in this house and she already has a Barbie doll in her image! There are some great writing posts and a pamper treat for your hands in preparation for the cold weather.

 

You might still be able to sit back with a glass of wine, or you might be reading this with your morning cornflakes, but whichever please sit back and enjoy!

https://soniasmusings.com/2018/10/13/exploring-the-world-through-blind-dates-over-the-years-sayyestotheworld-theblindlist/

http://chronicallyhopeful.com/twiddle-muff-for-anxiety-an-alternative-to-the-fidget-spinner/

http://www.salt-pepperlife.in/time-to-speak-up-metoo/

https://aurorajalexander.wordpress.com/2018/10/13/4th-halloween-poem-contest-1st-group-of-submitted-poems/

https://hopenlyme.com/coming-out-proud-mental-illness-stigma/

https://silentiousdreamer.com/2018/10/12/please-tell-me-how-im-not-handicapped/

https://www.style-yourself-confident.com/pamper-your-hands.html

https://hughsviewsandnews.com/2018/10/08/how-jodie-whittaker-saved-doctor-who/

https://legendsofwindemere.com/2018/10/10/finding-time-to-write-by-darlene-foster/

https://johnrieber.com/2018/10/14/venice-italys-legendary-hidden-bookstore-climb-the-books-at-libreria-acqua-alta-explore-undiscovered-venice/

Please comment, like and share the posts that you enjoy.

Have a great week,

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

Good evening!  It has been a busy day here, what with scheduling for Chronic Illness Bloggers, checking out a friend’s vicar mate to be our quiz master, trying to get on track with Chronic Pain queries on Scope…and passing out in the heat.  Hence I am only finishing this post tonight.

Monday Magic 16th July

 

One son has just returned from the Ukraine and a dose of radiation on a trip around Chernobyl (they found it fascinating and the photos show a strange dystopian type of vacant world), and now the other is about to jet off to a music festival in Barcelona.  Dad’s cab is getting very good a early morning airport runs!  We have 2 extra young men coming back to sleep on our sofas tonight before they are deposited at the airport for 7.30 flights tomorrow morning.  “Where are you staying when you get there?”  “We’re camping” “But you hate camping!  Do you have a tent?” “No, we’ve got a few hours when we get to Barcelona so we’ll get something then”!!  Nothing like being prepared.  The lovely girl is slightly better prepared for her trip to Greece next weekend as she orders shorts and bikini and has already checked in.  I mustn’t forget Mum & Dad either who have just returned from a cruise in France – Paris to Normandy, where they witnessed the jubilation at the World Cup semi final win, narrowly missing the actual final – or my sister in law and nephew, currently in Turkey.  Now I wonder where hubby might take me?

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Deserted city of Pripyat, within the Chernobyl exclusion zone

Those of you who read my post at the end of last week will know that a pain flare in the current UK heatwave has been causing me some grief and I haven’t managed as much reading as I would ordinarily.  But, I have managed to find some posts from some different bloggers and I hope you enjoy them as much as me.  Mascara warning for Hello My Name is Grief.

Sit down, grab a cuppa or a wine glass and get ready to read some great posts!

https://www.momspresso.com/parenting/the-glitterati-affair/article/learning-to-say-no

https://silencekilledthedinosaurs.com/2018/07/12/hello-my-name-is-grief/

https://diaryofapainfullyshyinterovert.wordpress.com/2018/07/11/im-totally-not-coping-right-now-but-im-extremely-frightened-of-any-mental-health-service/

http://bystarbysea.com/importance-of-rest-days/

https://teaandcakeforthesoul.wordpress.com/2018/06/15/menopausal-beach-body-blues/

https://kateonthinice.com/important-life-lessons-for-your-kids-before-they-head-off-to-university/

https://mummyhereandthere.co.uk/2018/07/10/10-best-life-tips/

https://girlinhealing.com/italian-grilled-zucchini-2/

https://veroniiiica.com/2018/07/16/fast-facts-about-plastic-straw-bans-for-people-with-disabilities/

https://www.britmums.com/2018/07/doubled-traffic-using-key-word-search/?ct=t(8_march_newsletter3_8_2016_COPY_01)

Like, comment and share these posts if you enjoy them.

Have a great week,

Claire x

Monday Magic – Inspiring Blogs for You

It has been a freezing week here in the UK, with widespread snow and some areas completely cut off.  Now the big thaw starts….we hope!  I can’t claim to have been cut off, but the cold is not the friend of my back and the titanium inside me feels as cold as the snow outside.  My spinal cord stimulator has been doing battle with the chronic nerve pain in my leg and back, as is seemed to ricochet off the charts….forget pain scored out of 10, how about multiply that by 10.  Even turning the stimulator up – increasing the intensity and speed of the “current” that I feel – couldn’t dampen it.

Monday Magic Inspiring Blogs for You!

But the good news is that whilst I have been keeping warm inside I have been doing a fair bit of blog browsing and even got round to finally registering on UK blogs!  I guess the next thing to do is sort out going self hosted – the student engineer is supposed to be doing this and hosting me, after all IT and software is his thing – and he has been web hosting since he was about 14.  But I am just his mother….and placed way down the list of priorities!!!  There are no plans in the pipeline to attempt to make my fortune blogging, but it would be nice to be able to be available for some more review opportunities…..so come on, son, get it sorted.  He is currently sitting here programming and flying a drone in my lounge……aghhh mind the dog! (My video won’t work so a pic will give you the idea)IMG_20180305_165617264_HDR

 

The other son has been in contact this week, but not because he wanted to make conversation with his parents…..we usually just get messages passed on from Snapchats received by the lovely girl.  He wants his suit, his shoes, tie and tie pin sent to him….by this Thursday please for a formal dinner.  Hmmm….I wonder if there will be a little something for Mother’s Day sent by return courier?  I won’t hold my breath.

Our other family member to be happy to see the thaw is our shaggy old dog, Samson.  He will hide rather than have to go outside and I am sure that the cold makes his arthritis worse.  But do you think he will take his pills? We have tried burying in his food, wrapping in melted cheese, fig rolls, even inside pasta….but he is wise to it all now and will eat his food leaving 3 pills in the bottom of the bowl, with not a tooth mark on them!!  Suggestions people – he is on doggy cocodamol and Pardale V – and his cocodamol costs a damn site more than mine!!download (2)

So now some blogs for you – I have found everything from heat hacks (perfect just now), to skills we mustn’t lose (please, please let me know how you score…and if you have tapped a tree!), to making fashion accessible.  Sustainability is very current and we can probably all pick up some tips to change our habits, and if you are planning a UK or European city break don’t miss The Style Thread.  The final post in an invitation to a special virtual coffee morning on International Women’s Day – join with bloggers globally to celebrate.

Grab a cuppa, sit back and enjoy some “me” time!

https://teaandmaz.com/2018/03/03/anxiety-makes-want-hate-convinces-believe-everyone/

http://ohlovelyblossom.com/personal-battle-anxiety-tips-overcoming-panic-overwhelm-stress/

https://eco-gites.blogspot.co.uk/2018/03/skills-we-must-not-lose.html

http://www.someplacestrange.net/2018/03/sustainable-me.html

https://bettysib1998.wixsite.com/young-sick-invisible/single-post/2018/03/02/Heat-Hacks-1

http://www.pigletish.com/blog/mentalillness

http://retrainbrainandsimply-shine.co.uk/how-being-really-vulnerable-resulted-in-my-diagnosis

https://myblurredworld.com/2018/02/18/making-fashion-accessible-blind-vi-person/

http://www.thestylethread.co.uk/2018/02/city-breaks.html

https://smorgasbordinvitation.wordpress.com/2018/03/01/international-womens-day-march-8th-2018-pressforprogress-coffee-morning-next-wednesday/

Please comment, like and share these posts if you enjoy them!

Have a great week,

Claire x