christa dyson's blog

Two recent trips have reminded me that airlines and tour operators still have a long way to go to understand the needs of disabled travellers. How could they improve their services? Just four words could help.

The rain lashed against the side of the plane as we pushed back from the terminal.  A storm was slowly working its way up the east coast of the United States, its eye passing precisely over us with our timed departure flying out of New York’s JFK airport.  We stopped.

‘There’s a problem’, said my ever-knowing husband.  Sure enough, moments later the Captain announces that the left wing of our plane has clipped the wing of another. Engineers must be rallied to inspect the aircraft to ensure it still fit to fly.

Within minutes our aircraft is lit up by a halo of flashing lights emitting from vehicles that quickly surround us.  A swarm of personnel in high vis jackets emerge.  All we can do is wait patiently and hope the incident is a minor one.  Soon to be on our way.

Images relayed to London technicians told a different story.  We would not be flying anywhere that evening.  More patience was required as the aircraft was to be towed back to the terminal.  Our fate to be decided.

As a disabled traveller I plan my journeys meticulously.  Now we were in uncharted territory and at the mercy of British Airways (BA) to come up with a plan to get us back to London.

When flying I always register as a traveller in need of mobility assistance. Though I can walk short distances, I do not have the ability to undertake the camel’s trek it takes to get me from baggage check-in to the cabin doors at any international airport I have travelled through.  It is no different on disembarkation.

Not wanting to leave anything to chance I politely stopped a passing member of the cabin crew to remind them help would be required.  I was assured it would be in hand.

Except three and a half hours later, when we finally were invited to collect our belongings from the overhead lockers and make our way to the front of the aircraft, there was no assistance waiting.  The crew looked on with dismay.  They would now be delayed from disembarking until this irritating passenger with special needs could be dealt with.

A wheelchair and ground crew to assist were rallied.  A 90 plus minute process followed to reconnect with our luggage, confirm new flight arrangements and be allocated emergency hotel accommodation.  I have to commend the guy who helped me throughout.  He kept his sense of humour when mine was failing fast.

But next came questions about our hotel transfer transport and hotel itself. Would I be able to climb into the minibus? Would accessible hotel accommodation be available?

Once I have booked any BA flight my email InBox gets bombarded with flight reminders, suggestions for next holiday destinations, Avios point updates and more.  Little is of any practical value to me.  Yet BA hold a wealth of data about my assistance requirements which has not changed in years.  Here was a chance for the airline to shine given the fate of our flight.

Disappointingly, not once, as the evening saga unfolded did a member of the British Airways staff ask, ‘How can we help?’

The transfer bus was not accessible to me.  There followed a search for BA ground staff to ask what our options were.  We were told that we could independently take, and pay for, a taxi to the hotel and claim our costs back.

Bundled into a taxi I thought we could relax for a moment.  But the driver announced his credit card machine was out of action.  Michael frantically checked his wallet for the $  136 required for the 45 minute night time ride.  Relief.  He had the cash.  But at the end of a vacation there are many who may not, if caught in similar circumstances.

Arriving at the hotel was no less stressful.  Exhausted bodies spread out across the foyer in a line, of sorts, snaking back forever.  Our flight was one of three ‘in distress’ that evening with stranded passengers all needing beds for their heads.

I wobbled into the foyer slightly dazed.  It was the sympathetic nature of other passengers who had tracked our disembarkation debacle that invited me to the front of the queue to be allocated a room ahead of them.  God bless these kind souls.

Accessible accommodation was forthcoming.  I was told I was ‘in luck’ but I defy the Marriot’s interpretation of what accessible means. The room was cavernous but the only bathroom adaption I could see was a handrail located on the far wall of the bath.

I was not going to die in a ditch for the lack of a shower in 24 hours.  With my trusty, well-travelled, toilet seat raiser we could adapt the low loo to a better height to be manageable.  Thankfully I could stand to use the sink but any wheelchair user would have not got close with all the cabinetry underneath.

Once home the battle to reclaim our costs and compensation commenced.  BA replied that we would only be eligible to have part of our train costs reimbursed.  Train?  Errr…really?  Enough said.

And BA, as a major travel company, are not alone in disappointing me recently. Encouraged by several friends who have enjoyed cruising we recently explored the Norwegian fjords.

Leaving from Southampton, P & O offered a seven day cruise which included sailing to first Stavanger and then on through Sognefjord, one of the worlds longest and deepest fjords, arriving in Flåm.

Now was my chance to see Pulpit Rock, the majestic steep cliff which projects out over the Lysefjorden.  Unable to climb the route to its flat top I figured a helicopter ride would be an exhilarating alternative means to see this geological marvel.  Next would come my chance to experience the magic of the Flåmsabana, a 20 km railway line to Myrdal.  It is recognised as one of the world’s most beautiful train journeys.

Cruise liners request anyone travelling with a disability to complete a questionnaire and register any assistance they require, especially in the event of any emergency and the need to abandon ship; heaven forbid.

I am a slow walker with limited hand function.  I accept that I would require assistance to don a life jacket and possibly a good shove to get me in to a life raft.

But having registered my disability and booked my excursions, within 24 hours, I received a generic email telling me that, as a wheelchair user, there were a limited range of tour options available to me as there were limitations to the accessible transport.  I was to book early.

I take exception to being told what excursions I must go on because I am a wheelchair user.  Clearly P  & O have not even read my form.  I have just been mass-processed and become an item of data.  I do not use a wheelchair and declared I would not be travelling with one.

I did, however, have some questions about the tours I had booked.  Not least, what were the transport arrangements to and from Stavanger’s harbour to the heliport at Sola? I was mindful of the inaccessible minibus provided at JFK.  And, would it be useful to pack a portable step to help me access the helicopter or climb aboard the Flåm train?

Ringing Customer Services prior to our departure was a long shot.  In truth, I would have been amazed if they knew anything about the tours they offered.  But the tour desk on-board left me feeling somewhat deflated when their only reply was ‘Well, if you can’t access the trip there’s no refund.  Those are our terms and conditions!’  There was not even a glimmer of hope, or understanding, that comes with asking, ‘How can I help?’

I know and accept the rules.  What I wanted was some ‘intel’ to help me better prepare. Should I arrange a taxi transfer to the heliport? Such things as portable chairs and steps exist.  I am not averse to packing a little extra luggage if it helps me overcome a few simple barriers like having to stand for a bit or tackle a high step.  As it was, I packed neither and took my chances.

With a bit of heavy handling from the husband, a steadying hand from the pilot, offers of help from other passengers we accomplished all the trips and have great memories of a beautiful country.

Only once did we hold anyone up and that was when we were the last to embark at Flåm before setting sail.  But though I am slow to walk, it was not my fault.  The train was running late.

I love to travel.  In the words of St Augustine, ‘The world is a book and those who do not travel read only one page’.  I hope to read many more ‘books’ the world has to offer and enjoy all its illustrations.  I work hard not to let my disability define where I may tread.

Disability takes on many forms.  Mobility impairments take on many guises.  There is no one boot that fits all to help us on our way.  But, given the volume of passengers that BA and P & O handle each year with mobility impairments, it saddens me that still in 2019 there is not hint of the personal touch of just four words ‘How can we help?’, to be heard.

Are my expectations too great? Both company’s have received the gift of feedback.

A four week admission to the National Spinal Injuries Centre for rehabilitation brings a new set of challenges but is a reminder of how precious these services are.

Crash!  Scattered across the bathroom floor lie a control unit, a battery and a back panel. I’m wired up with a foot drop stimulator and, somehow, my hospital wrist band has caught on the hook fastening the control box to my trousers spelling trouble.  Again.

I go in search of help.  Another patient on my ward, Lucy, kindly offers to retrieve the items spread across the floor and re-connect me.

The day before I had accidentally knocked the alarm located next to the toilet in the spinal gym.  I had been wrestling with my clothes, trying not to dislodge the battery pack.  Dot, Head of Physiotherapy, knocked at the door.  ‘Are you all right in there?’  But with the background buzz of activity in the gym she couldn’t hear my reply.  ‘I’m coming in,’ she announced.  ‘Oh Christa, it’s you!’ seeing me sitting enthroned.  Hitting the alarm reset button calm is restored and I, sheepishly, declare what had happened.

But neither incident compared to the first time I inadvertently dislodged the control box with my clumsy hands in a bathroom environment.  On this occasion, to my dismay, I saw it dangle by a wire just centimetres above the toilet water line.  As carefully as I could I reeled in the wire, relieved the pack stayed connected, before going in search of a gym assistant to ‘re-assemble’ me.

The foot drop device I am experimenting with has a switch located in the heel of my right shoe.  A wire runs from the switch inside my trousers, up my right leg, across my tummy and connects to the control pack which is hooked on to my trousers.  From the pack another wire runs down my left leg to two precisely placed electrodes stuck to the front of my left shin.

Short pieces of elasticated bandage, strategically placed on each leg, hold the wires in place and prevent them working their way around my knees.  Though basic in its set up the system allows me to explore whether it helps my walking.

As my right heel hits the ground it sends an electrical impulse to my left calf.  This is translated into muscle action to help my left foot to flex in preparation for the next step I take. Left to its own devices this foot drops and causes me to stumble and walk badly.

Years of walking out of balance with an unsteady gait have put my body under stress and strain.  In recent years my walking has deteriorated further and I have begun to fall more frequently.  I live in hope I can improve such that short country walks become possible again.  That is my long term goal.  But first I need to move better and stay safer, not falling so often.

In the weekday evenings I wander the hospital corridors building up my confidence.  In my head a rhythm develops; strike (right heel), buzz (electrical input), step (with left foot), strike, buzz, step.  I have to concentrate hard.  I start with baby steps.  By the end of four weeks I feel my stride has lengthened just a little and I walk a fraction more upright.  For me that’s a double plus.

At weekends Michael, Vann and I visit different local parks and playing fields and see how I cope walking on different surfaces; gravel, pavement, grass and steep slopes.  Michael quickly notices I walk with less of of shoe shuffle and more independently with the system than without it and it is still early days.

In addition to assessing the foot drop stimulator,  I have a gait assessment, orthotic appointments, hydrotherapy, physiotherapy, occupational therapy, join in Pilates classes, try a NuStep – best described as a seated cross trainer – which is great for some cardio exercise, and, a chance to practise my walking further harnessed on a treadmill, amongst other things.

After four weeks there is no doubt that I have learned more and have a better understanding of how my body moves.  I am also shattered.  But, more importantly I have a clearer idea of how to help myself going forward and yes, it includes looking at a foot drop system but one that operates on Bluetooth.  Wires and I are not a good mix.

Whilst in hospital I found it motivating to also meet other spinal cord injured patients who walk.  Despite living with my injury for over 25 years there are always new things to learn.  It was especially valuable to hear how others had got on trying the same foot drop system, not least varying the intensity of the electrical impulses as the day went on and muscle fatigue set in, or, in different situations.

There is a lot of negative press, at times, about the NHS however I can’t fault the dedication and professionalism of the staff who cared for and worked with me.  They were unstinting in their quest to keep me safe and on my feet.  And, they delivered their ideas with energy, enthusiasm and good humour.  In four weeks I now have avenues to explore, exercises to work on and a sense of optimism that I can remain a ‘walker’ for longer yet.

I also underwent a complete ‘below the belt service’ of renogram, abdominal X ray and scans to check my kidney and bladder function – always at risk when living with a spinal cord injury – a battery of blood tests and more.

I did, however, have to wait six months and fell over many times in the interim before a bed became available for me as a re-admission patient.  Such specialist hospital beds are at a premium.

I met several patients who, newly injured, had had long waits in other general hospitals before finally getting to a specialist centre to even begin their rehabilitation.  Two had not received the interim care they needed.  This resulted in them acquiring horrendous pressure ulcers which took months to heal, confined to bed rest until they did.  Sadly, their story is not unique.

And I know there are still others who never gain access to a specialist unit.  I can only wonder at their outcomes and quality of life long-term.

Yet, at the National Spinal Injuries Centre, one ward, St Joseph’s is presently closed to spinal patients.  Lack of specialist staff and funding key reasons it’s doors are closed.  I find that a travesty.

There is great talk of the community providing services to support those of us living with a spinal cord injury but the reality is, when problems arise, few in the community have the knowledge and understanding to effectively help.

After my four weeks rehabilitation I am reminded why I remain so committed to supporting the Spinal Injuries Association (SIA) who campaign for those of us living with a spinal cord injury to get access to the specialist spinal unit services when necessary.

Michael is shortly due to embark on his next challenge cycling event in support of SIA. This year he will be cycling four countries, Croatia, Austria, Hungary and Slovenia, in three days.  I know he would welcome your support.

https://www.justgiving.com/fundraising/mjdyson

Meanwhile I will be taking each day one step at a time!

The need for timely access to specialist spinal care is a lifelong requirement for all living with a spinal cord injury.  And never more so than when complications arise from ageing with a spinal injury. 

Last month marked twenty-five years of living as an incomplete tetraplegic.  When an unsuspecting stroke left its indelible mark on my spinal cord my life, and that of my family, was blown of its course and into uncharted waters.

It is hard, still, not to wake up on these anniversary mornings all these years later and forget that fateful day.  This year was no exception.  I still find it difficult to reconcile why such a thing happened to me.  I still miss not being able to do more for myself.

But there is no going back.

It is thanks to the myriad of healthcare professionals who have unconditionally supported me this past-quarter of a century I can do all anything at all.

Just to categorise them is a task in itself; consultant neurologists, spinal consultants, GP’s, registrars, orthopaedic doctors, urologists, dieticians, psychologists, physiotherapists, occupational therapists, opticians, biomedical engineers, a social worker, a gynaecologist, an osteopathist, podiatrists, dentists, radiologists, nursing staff including district nurses and still the list is not complete.

Without the all above I would not be able to wash and dress myself, prepare a light meal, go to the toilet, drive a car, travel on holiday, pursue any interests, engage in voluntary work or even type this blog.

All the new skills I acquired during my rehabilitation were hard fought for both on my part and those supporting me.  My health and welfare have been in so many different hands around the world since but, regardless of the system they operated in, I’ve never felt they have had anything other than my best interests at heart.

All have helped me unravel the mysteries and complications of life as an incomplete tetraplegic, helping me stay as independent and healthy as possible.

Yet for all this time and investment in my rehabilitation and care that I have received, I am concerned that my future ability to live well with my spinal cord injury is in danger.  I am not alone either.  Speaking to many spinal cord injured people we are similarly anxious.

For as we age with our injuries we find our access to healthcare is in jeopardy.

Not for the first time I have written that my walking is deteriorating but this year I have fallen far more frequently.  In September I sought help and advice from my spinal unit.  I have been offered a period of re-admission to undertake some intensive physio and hydrotherapy, amongst other things.

Except the admission times are long and undefined, exacerbated by one ward presently closed with unsafe staffing levels cited as the reason.  I must be patient like many others. As my ability and confidence to safely walk any distance diminishes, my world becomes that little bit smaller.  But for others who are similarly waiting that world can mean being confined to bed.

Let me introduce Rachel.  I share her story with her permission.  Completely paralysed from the chest down following a surfing accident whilst on vacation in Réunion 20 years ago, she has been a wheelchair user since.  One of the complications from sitting extensively are that pressure problems can arise, despite hi-tech seating cushions and periodic posture adjustments.

She unwittingly developed a skin issue, resulting in a deep pressure sore which refuses to heal.  It has effectively kept her on bed rest since February this year.  In the intervening months she has been hospitalised twice with sepsis and, not surprisingly, ended up feeling very low; each day a mental battle.

It has taken four and a half months of fighting to find a plastic surgeon who will operate, having to change specialist spinal units in the process, to then learn the waiting list for such surgery can be up to two years long.

She is married and mum to a nine year old daughter.

As we age with our injuries inevitable changes occur be it to our mobility or skin, amongst many other things.  Our need to access to specialist care in a timely manner remains undiminished to enable us to continue living as independently and healthily as possible.  Yet access to such care in 2018 remains ever elusive.

In addition to the uncertainty that surrounds delayed access to specialist care come the prospect, often inevitable, of further complications be it physical and/ or mental ones. Longer admissions times are often required once a space is found with inescapable extra costs to our health system attached.  And it is not just the lives of the individual who is waiting that are put on hold but family lives are turned upside down too.

One of the many reasons I remain so keen to support the Spinal Injuries Association (SIA) is that lifelong access to specialist care is fundamental to their values.  It drives what they try and achieve as a charity year round.

If anyone is inspired to contribute to a good cause this festive season please consider supporting SIA.  Visit their website www.spinal.co.uk and click on donate.  Better still join as a member or supporter and you will learn more about what your money achieves.

But if there is ever a silver lining to the cloud of Rachel’s delayed admission it is that her husband encouraged her to start painting.

In her own words, ‘He saw me sink increasingly further into depression and decided to try and pull me out of it, by buying me some paints as a surprise.  I laughed at him and asked him why on earth he thought I would be able to paint, especially with my tetra hands!

….so I painted a pot of lavender and it was rubbish, just as I thought!!!  However, for want of anything better to do, I kept going and it helped so much as my focus gradually shifted from my immediate situation ….’

Rachel now paints under the name The Wonky Artist. You can find her on Facebook, on Instagram @thewonkyartist and she was recently interviewed by the BBC North West … https://www.facebook.com/BBCNW/videos/vb.120655094632228/320577191869613/?type=2&theater

I am pleased to present a little bit of her work she did for Focus Forwards with a Christmas theme to it.  A glimpse of it can be seen heading this blog.  The complete picture can be found on my Focus Forwards Facebook page.

Whilst I still wait for a date to be re-admitted to my spinal unit, Rachel has recently learnt a space has been found for her in January when she will undergo several hours of surgery.  I feel certain like me you will want to wish her all the best.

Meanwhile summing up in the words of Rachel’s artwork…

Merry Christmas!

Finally.  The call came.  ‘We have a match’.  I could not believe it.  After many months of waiting I was on the verge of giving up all hope.  Patience has been my virtue.  Today I consider myself to be one lucky individual to have a new and handsome partner.  He comes with four paws, a waggy tail and a very biddable nature.

The charity Dogs for Good breed and train dogs to support people living with a disability. They have found and teamed me with a dream companion.  He is called Vann.  Put simply my new assistance dog has been life changing.

From the first days after meeting in our local Waitrose supermarket for a practise walk around the store, he quickly fell into my slow step.  And since, he has not put a paw out of place.  He quickly settled into our family way of life and learnt the quirks of living alongside a wobbly walker with no hand function.  He has stolen not just my heart, but that of my husband and wider family and friends too.

Early in his training I was keen he learnt to fetch a phone on command.  With a tassel attached to our hall handset he adeptly mastered snatching it out of its cradle and bring it to me.  Only days after being introduced to this task he was put to the test.

As I opened the fridge door to retrieve some ham one of my legs buckled under me.  I collapsed to the ground.  ‘There goes the meat’, I thought.  Vann would surely seize his chances for a tasty morsel.  Alone in the house, with just the dog for company, it was a case of deciding on a course of best action to get me to upright as safely and as soon as possible.

Slithering along the floor from the kitchen to the hall, where I can sometimes help myself to get upright again, Vann tracked my progress.  Quickly what energy I had ebbed away.  I could not get up.  I needed help.

Vann came and lay down along side me and we had a chat about my predicament.  ‘Fetch phone Vann, fetch phone.’ I spoke softly to him deciding to put recent training to the test. He leapt to his paws, snatched the phone from the table and before I had barely blinked brought it to me.  Within moments I had placed a call to Michael.

Waiting for him to arrive Vann remained lying at my side, a constant companion.  When Michael entered the house, Vann rushed between the two of us as if to direct my husband to where I lay.  Vann had won both of us over with his ability to help me in a crisis.  Just as remarkable, the packet of cold meat was retrieved from the kitchen floor untouched.

For further assistance I can turn to Vann for help with so many things.  He is a brilliant laundry assistant.  Wet heavy towels and bed-linen have always been difficult for me to retrieve from the washing machine, as have those last small items that stick themselves to the back of the drum.  They present no problem for him.

Any letters that hit our doormat used to remain there until a helping hand could pick them up.  Meanwhile they remained a hazard in the waiting for me to slip on if I needed to leave the house before retrieved.  Vann is a master postman.

As I drop a myriad of items from my clumsy hands be it tea towels, my eating splint, clothes whilst I dress, Vann collects them all up and returns the items to my lap.  He opens low draws and retrieves items from them for me.  He pushes open doors for me.

Once he was a little more established with his routine I introduced him to carrying basket for me with my keys and purse inside.  He happily scoops up the basket and trots out to the car with it.  Now he is well known at my local gym, garden centre and podiatrist for his basket skills.

He is presently learning to fetch my slippers on command, something I sense won’t take him long to master.

But where he really comes into his own is when we are out and about together.  He walks steadily by my side.  Whilst members of the general public are not aware of my vulnerability to falling if knocked, when they see Vann they step aside to give me more space.

During a trip to Liverpool we visited the Beatles Museum.  It was heaving with people all jostling to see and read the exhibits.  Typically, this would be a place of my nightmares to visit.  With Vann alongside me the people parted affording me safe passage.

Later in the summer, with family, we visited Arundel Castle.  Large groups of tourists were absorbed in following their guides, totally oblivious to others.  In past years I would be firmly attached to Michael’s arm for safety.  No more.  I could wander at my leisure to see what I wanted, for as long as I wanted, and, sit down to rest when I wanted.

I came away from having explored this medieval castle-cum-stately home having thoroughly enjoyed myself.  It has been over twenty years since I had had such freedom to roam so freely.  And the list of places I continue to equally enjoy is just growing because I have Vann.

Sadly, earlier this year Michael’s father was taken very ill.  It required frequent visits to various hospitals.  Being an assistance dog Vann could always accompany me.

Arriving on the stroke unit at the Lister Hospital in Stevenage we were greeted by an occupational therapist who exclaimed, ‘Oh, now there is a second dog on the ward’!  I wondered where the first might be, soon finding out.

A ‘pat’ dog was on a tight lead standing alongside its owner who was in discussion with a nurse.  ‘Perhaps when the dog has had a chance to calm down he can return another day’, I overheard the nurse say.  Clearly things had not gone well for the dog who had been ‘visiting’ patients on the ward.

As I walked past one of the bays a lady called out to me asking whether she could stroke and say hello to my dog.  Apparently she missed her own dog dreadfully.  She had not had a chance to meet the other visiting dog before he started misbehaving and was  ‘released’ from duties.

Vann is not a trained petting dog and I had no idea how he might behave but I was willing, as I explained, to give it a try.  As we stood by this lady’s bed I asked him to put his paws up on her bed so she might be able to reach him easily.  He seemed to know intuitively what was required of him.  Within minutes the four other patients were asking if they could stroke him too.

‘But you’ve already had a go with the other dog’, cried one lady to another.  ‘Ah, but the other dog was rubbish.  This one’s much nicer’, came the reply.  We duly visited all the ladies and it was clear they just loved the opportunity to meet and greet him.  As I left the nurse remarked she had not heard so much lively chatter on the ward all day.

Vann has since visited the local Charvil Brownie Pack as they worked towards their Disability Awareness badge, been on the BBC Eastenders set, met our current serving Prime Minister, Theresa May, and, the lovely team principle Claire Williams from the F1 Martini Williams racing team.  He takes all such meetings in his stride.

He is a model traveller, leaping into the back of our cars whenever there is a road trip on. He loved his vacation to the Lake District and won over the staff of the hotel where we stayed, not normally welcoming to dogs.  As we checked out I was asked if we might return next year as the staff had enjoyed Vann’s company so much.

And so we head towards our first Christmas with Vann.  Already he has demonstrated he is a dab ‘paw’ at opening presents.  We recently hosted a Sunday lunch for friends. Wendy brought a gift for the dog all beautifully wrapped in dog motif paper, no less.  In a flash Vann had extracted the present, a toy pheasant on a rope, which immediately became and has remained his favourite toy.  ‘Oh my’ declared Wendy, ‘Christmas is going to be fun when it comes to present opening’.

I typically have to ask others to open my presents each year.  This year I’m planning on some hound-dog assistance.  He is going to be kept busy.  And that is only judging by the stash of present accumulating under the tree from family and friends of his own that he will be opening.

I sense a ripping good Christmas Day lies ahead.

Merry Christmas readers!