Monthly Archives: March 2015

Economic Predictions of a False Economy!

A few years ago my mum and I were sitting in a hospital waiting room, a situation not uncommon for either of us. Chatting as you do to relieve the monotony we began to wonder just how much of our lives we had spent in this situation. My mum, ever the whizz with number crunching, began this complex calculation. The end result equated to about 12 months as an inpatient at various hospitals and 5 years if you counted outpatient appointments and all other disability related meetings.

The amount of time spend waiting of things got so ridiculous at one point that I considered sending a petition to God for a refund on the bits of my life I had spent in health and social care transit. That is the thing when you have a disability in tow, everything takes twice as long. I have a friend who used to say that having a disability was akin to the scenario of having your first child, it changes life as you know it (something my brother will undoubtedly agree with having had his first child earlier this month).

Change is in the air for all of us. I decided it was time to sort out my own needs that previously had been so deftly met by my late mother. To this end I got myself a social worker; well technically my district nurse did, apparently these services are integrated. I waited a week or so and heard from one of the adult social care workers who made an appointment to see me at my house. We had a discussion about my needs, lifestyle and sources of appropriate support.

The social care landscape has changed significantly over the course of the last 5 years, now many social services departments across the country only provide for individuals who meet the critical and severe category. This leaves a substantial number of people in a black hole; there are those of us that don’t require intense levels of care but we do need ongoing support and care to prevent deterioration to the point where we do require more significant intervention. For example, I require the application of regular emollients and assistance to wash my feet and legs, this prevents skin breakdown, risk of infection and ulceration. However, because I want to continue to try and maintain my independence and only have outside assistance with this particular task, there is seemingly no criteria I meet that would initiate statutory provision.

I have been told to source the support privately, which I am happy to do. This has created a very interesting dilemma, finding an organisation that provides this service, covers my geographical area and is willing to come out for 2 calls per week of half an hour duration is like searching for gold at the end of a rainbow. I have never had this experience in any other walk of life. I cannot imagine walking in to a shop and trying to spend money, only to be turned away. It does seem financially sensible and it certainly in my opinion lacks good business sense.

The best I seem to be able to do currently is sit on a waiting list and wait for new arrivals to one care agency to be trained up in about 6 weeks or so. This process has made me realise just what a precarious situation I am now in. Support available would seem to make it almost inevitable that my situation will deteriorate to a critical point, where I will need costly, intense support and possibly hospitalisation. This has got to be a false economy in every possible sense.

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Irony and Assistance 

I have always said that as a dyslexic writer I am proof that God has a sense of irony. I was reminded of this last week when my nephew, Hamish, decided it was time to come into the world, This was on the same day that our family said our final goodbyes to my mum, following a long battle with cancer.  In the same week I received a text message from my dad saying, “I am in hospital. Don’t worry I have had a TIA (transient ischemic attack) and am waiting to see the stroke bloke. I feel as fit as a fiddle now though.”

That text sent about a gallon of ice-water down my spine and into my scull and I felt as though my brain had frozen in some kind of ultimate brain freeze. The past 12 months have been a great life lesson in the different workings of the male and female brain. I cannot for example think of a scenario where my mum would have broken such worrying news via text, then spend the following two hours being incommunicado by any modern means at my disposal. My local hospital is something of a grave yard when it comes to phone signal, so is my brother’s house but we will get to that later.
The TIA has meant that my dad is now unable to drive, to put this in context he lives in a comparatively rural area some 5 miles away from me and just for the record, I cannot drive either. I have not inconsiderable levels of support need, usually serviced by my dad arriving at intervals in his trusty Volvo to clean the house, change my bedding and take the ironing away to be done. The absence of motorised transportation has made life very interesting. My dad, the avid walker and adventurer, has now taken to to donning a rucksack filled with ironing to be done and taking it home.
This time last week we decided that we would go and see our new arrival, train tickets were duly booked as was the necessary boarding assistance for the rail travel. We turned up at our local station where I was greeted warmly. I do rail travel quite a lot and the station staff know me quite well; a definite advantage when travelling with a disability and normally alone. This was going to be a relative treat as I had my own onboard, physically able assistant.
We arrived at my brother’s house to discover that the camping bench he had ordered as an improvised shower seat had failed to arrive. Apparently for some unknown reason it had not yet despatched though we were assured that it would definitely arrive the next day. I could not get irate about the absence as I was too excited to meet Hamish.
When I met him, he was perfect. After this we went back to my brother’s newly finished house, a converted water-mill. Bedrooms were on the 2nd floor, the ground floor accessible rooms still have work to be completed so it was down to being carried up and down stairs by my younger sibling. I made him go a bit red in the face, so reverted to the soft-bum shuffle ably assisted by Pumba, the family Springer Spaniel. When I was at the bottom of the stairs I discovered that I had no mobile phone signal in order summon assistance to bring my wheelchair downstairs. Shouting was pointless as my father is hard of hearing. I hit on what I thought was a splendid idea and told Pumba to, “Go and fetch Grandad.” She dutifully obeyed. However, Grandad didn’t take the cue and thought Pumba had just come to play.
This led me to think about assistance dogs, and whether it was time for me to have one. I realised how useful it would be and it was comforting that Pumba would not leave me alone and sat by me until my dad finally came. Very reassuring. I began thinking about this instinctive bond between man and canine and discovered the idea of using dogs in this manner wasn’t new. The most well known use is as guide dogs for blind people which was first tried in Paris in 1780 when Josef Riesinger trained his Spitz to guide him. Johann Klein, from the Bling Institute in Vienna, mentioned guide dogs in his books of 1819 and the first guide dog school was opened in Oldenburg, Germany in 1916 to train dogs to assist war veterans.

Pumba providing encuragemeant half way down
I have one friend with a Canine Partners’ Dog. Canine Partners are a charity that provide assistance dogs for people with disabilities. Faye has found Odile a massive positive in her life, giving her confidence,companionship and physical assistance with tasks like getting the TV remote.

Faye and Odile
From my point of view I have always found dogs to be far more perceptive than humans, seeming instinctively to know when you are sad, distressed or happy; they are not self-conscious and will quite naturally come up to you and nuzzle you as if to say, “I am here, you are not alone.”

 

Adversity, Misconception and Disability Chic

A few weeks ago I ventured out to my local cinema to watch ‘The Theory of Everything’. This was the amazing film about the life of professor Stephen Hawking, the world renowned physicist and cosmologist. As well as his intellect he is perhaps, the most well known sufferer of Motor Neurone Disease. He was originally given a life expectancy of two years, however he defied the odds and has survived many decades longer than predicted, making major discoveries and contributions to the word of science and to the layman’s understanding of it.

Growing up when I did role models with disabilities were thin on the ground, the few there were only had connections to sport. I did my fair share of physical activity as a child I swam and was a keen rider having regular sessions with the Riding for the Disabled Association via my school and private lessons at home. It was only recently when researching an academic project that I discovered horse-back therapy, or hippotherapy, is a clinically recognised therapeutic intervention. The name has Greek roots, ‘hippo’ meaning ‘horse’ and ‘therapy’ meaning to ‘treat medically’. My support worker and I had thought it was a spelling error! This therapy has been shown to promote physical development, speech and confidence in individuals with disabilities.

Looking back, I don’t think I aspired to be successful on horseback in any kind of conventional, competitive sense. For for me it was an odd kind of escapism, these activities assumed an almost hedonistic quality. The hours swimming and riding were like a window on another life. I loved that I didn’t look “disabled” when I did them. Just as today I sometimes lie on my bed in an outfit to get an idea of what I would look like standing up and enjoy the appearance of my washboard stomach, only to have it disappear (somewhat depressingly) when I sit up again.

I saw wheelchair sports as negative. I had been raised to believe the wheelchair had too many connotations of ‘laziness’ and ‘giving up’, for it to become part of a leisure activity or a positive tool to allow me to achieve. Society has certainly come a long way in the last 20 years or so, at least I thought it had until I picked up a newspaper and read the story of 12 year old Joe France who was denied entry to the Hawking film because it wasn’t being shown on any of the screens he could access. Ironically, this incident coincided with Disabled Access Day.

It saddens me greatly that situations like this are still impacting on the lives of individuals, a generation after legal measures aimed to make such experiences a thing of the past. This is also following a period in which Motor Neurone Disease has seen a massive increase in public awareness as a result of the ice bucket challenge. For the uninitiated this was a charitable craze that went positively viral, it involved individuals pouring buckets of ice water over themselves with the aim of raising money for Motor Neurone Disease. Participating individuals filmed this activity posting their endeavours on social networking sites such as Facebook and YouTube.

An article in ‘Society Now’ describes the craze as narcissism dressed up as altruism, and questions the motives of those taking part and the effect of these crazes on societal giving. They point out that when one cause is in vogue others lose out by default, not just in the financial sense but in the social sense as some causes cannot hope to capture the public’s imagination. Dyslexia is one, as is the needs of adults with Cerebral Palsy; we are not cuddly, sweet or life-limited. We struggle on with all the appeal of an elderly dog in a shelter waiting and hoping for someone to notice we are there.

For me the solution is to adopt the US attitude towards disability, to celebrate it and support the individual more. We are not all in the position of Stephen Hawking with supportive parents, wife and close friends; neither do we all have his intellect. Most of us are average people whose ambition is to go through life with a family, work and leisure activities. For this to be achieved the basics need to be in place…. accessible public transport, flexible working hours and a flexible benefits system that does not penalise for trying to gain paid work. Here’s to progress.