Tag Archives: cerebral palsy creativity

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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Only When I Laugh

A few weeks ago I was reading The Times Newspaper’s ‘Spinal Column’, a regular feature written by the columnist Melanie Reid who became quadriplegic a few years ago following a horse riding accident. Her column has provided a much needed window into the disability experience. It is raw at times; written in the moment. Melanie shares with we readers the ups, downs, farcity and at times utter hilarity of life with disability.

I was surprised and saddened when she related that some readers thought she was making light of the problems people with disabilities face. Personally I have always been a great believer in the power of laughter. The ability to laugh at myself has been a saving grace in the last ten years, it has helped me to deal with unimaginable loss. It has saved me from becoming a moaner, I can discuss my problems and not feel weighed down by them. People think I am eccentric when, for example, I say that I have become convinced that my garden shed has a contract out on my life as bits of its construction seem to keep wedging themselves under my wheels at the most inconvenient times.

For me, humour is a way of deflecting my mind from my personal vulnerability, the precarious nature of the limited independence I have. The last few months have given me precious little to laugh about apart from 2 things: our family have now developed a communal sock fund; men see wardrobes very differently to women.

First the communal sock fund, because I have very swollen feet I have to wear men’s size 8 to 10 socks. This is, coincidentally, the same size worn by my dad. He has now taken over laundry duty with the result that recently we discovered we were in fact wearing each other’s socks, as they had somehow got swapped in the process of him doing the laundry at his house and returning it to me.

Secondly, men and wardrobes. My dad has developed a hatred for plastic coat hangers, as he says there are too many of them in my wardrobe and they take up too much space. He also struggles to tell the difference between nighties and dresses, pyjamas and leggings. This makes it really interesting when I come to get dressed each morning and reach into my wardrobe. He did help me the other day when I tried 3 times to fasten a shirt up, got frustrated as I was always left with a button at the bottom and he explained that it was the spare button.

If we both stopped to think about why these things were actually happening we would probably end up in the deepest of depression. However, the ability to laugh in the face of adversity has, to this point, saved us from that.

This week I came across a quote by Robert Kennedy that summed up how I feel about dealing with sadness and adversity, “Tragedy is a tool for the living to gain wisdom, not a guide by which to live.”