Category Archives: care in the community

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.

Going Retro

This week I’ve been immersed in activities that I thought were well and truly relics of my past life. What, you ask, has prompted this backward step?My almost nephew will be turning five in a month, and thinking about this caused me to have a crisis at the passage of time.

Alexander has now overtaken me in many areas, and I witness regular, effortless, neurological development that many times alternately astounds me to tears of joy. For over a year he has been able to do jigsaws with over 100 pieces which I, with my visual issues could not do at his age, or even now. I am having a good day if I cope with something that says age 3 plus, though I never saw the point of putting the thing together in the first place. For me, it was a torturous activity far too resemblant of physio or occupational therapy to make it it to a pleasurable pastime.

I like to get useful, mostly educational type gifts. When at Christmas, Alexander sat next to me reading what I think was the ladybird book of the Christmas story, I looked on in wonder as he read aloud the entire book complete with the back cover that said it was suitable for toddlers. I had to point out that it wasn’t referring to the person doing the reading. Just as I marvelled at how easily he learned to walk, I was floored by the ease and fluidity of his reading and was overcome with utter relief for him that he will be able to experience other worlds, learn facts and express more than I would have been able to do at the same age. I like to share the books of my childhood with him, in turn recapturing my lost youth, or perhaps more accurately my inner child.
It was to this end that on Sunday I found myself purchasing an audio book of ‘A Bear Called Paddington’, by Michael Bond. For the uninitiated Paddington is a small bear from ‘Darkest Peru’. He is sent to England by his aunt Lucy after she moves to a residential home for retired bears. He somehow finds himself on a railway station platform, is found by the Brown family wearing a label saying, ‘Please look after this bear’ and in the logic and kindness that seems only to exist in children’s stories, they do just that. No questions asked.

Paddington has a very literal thought process, gets into scrapes and has adventures. He also seems to have a negligible ability to spell, which endears him further to me. Sometimes I think he is me in bear form, he certainly seems to have as many obscure adventures.

I swore that, after my previous experience with emergency call buttons, hell would freeze over before I had one again. Well, it’s chilly outside and after having found myself stuck on a bedroom floor, discovering why dogs don’t like laminate, as you cannot get a purchase on it, I have had to relent.

I was most impressed that the Social Worker managed to get this sorted out within a week and a half, even taking into account Christmas break. I had a phone call telling me that an installation operative would be calling to fit me with the necessary kit. He came at the appointed time and began demonstrating the equipment. When installing the box he had to move my ornamental Bilbo Baggins, made for me by my dad’s artist friend. In this I discovered a kindred spirit and while he was working we had a lovely conversation about Tolkien.

When he had finished he got me to have a test run, I pressed the pendant button and a reassuring, automated voice told me not to worry, that I would be connected shortly. The test run went well and the responders on the end of the phone seemed to really be aware of the need for their service. A far cry from my last experience, about 10 years ago.

It is heartening to discover that even in a climate of cutbacks and closures of services, positive progress has been made. I now feel much safer, as a result this has made me more independent. Strangely, it has also made me feel more youthful as I know I will be able to sort out a problem without relying on family support. I feel positively retro in all senses.