Working together

I received through the post my appointment details for the dental hospital next month, when I opened it I was a little confused at first why there should be anything more than just the letter, but there was clearly more than one sheet of paper. Once I actually managed to separate the pages, something that with poor dexterity is just getting silly as time goes on, I found that there were, in fact, three sheets, the appointment letter, and a two-page questionnaire. I found my reading glasses and started to go through the questions to see what information they were looking for, but I wasn’t much further past name and date of birth when I noticed the size of the boxes that they expected me to be writing my answers into. Poor dexterity doesn’t just mean problems with picking things up, it also includes writing, one of the reasons I so love my PC, I don’t though have a printer, so I can’t just transfer the details onto here and complete it and print. It wasn’t only my writing that I was by then guessing would be the much-expected questions, as I went down the form past requested details of if I have heart problems and on, I found what I expected, “Are you receiving any tablet, creams and ointment from your doctor?”, with a box only big enough for me to write about half of the name of just one of them. Then the question asking me to list all the conditions I have and finally the dates and reasons for my being admitted to hospital with the word “ever” highlighted. I guess I am about to write a novel and it won’t be on their form either. I can only guess that they don’t have access to the medical records that the NHS have just spent a fortune putting online here in Glasgow, but on top of that, they haven’t put any thought into producing the form, I doubt most people once past the age of 50, especially women who if they have children could well have been in and out of hospital for loads of reason, could possibly put the details they are asking for on that form, even if they could write as thought they were mouse-sized.

Throughout my life I have had a real hatred of forms like this one, it used to be forms that asked for every address I have ever lived at, were my pet hate, I had 9 before I was 16 and apart from 2 I couldn’t tell you the address of any of them. Just sitting thinking about it right now, I can’t actually remember the house numbers of the two before we bought this flat, the street names, yes, but the numbers are gone. I fully understand why companies and even hospitals ask these sort of questions, but when are they going to allow for three things, firstly that there are people who if they tick the yes box, have more than one tiny answer to supply, secondly, that not everyone can write neatly or even in readable small sized character and thirdly, some of us have really, really bad memories and the details they want, just aren’t there, we aren’t trying to hide anything, in fact we would love to remember, but we can’t. I do honestly think that these days they should be more aware of these facts and with most of us having access to PC’s, that they should be able to supply everyone on request an electronic version that can be filled in with ease and returned without cost. There are so many small things like this that have and I suppose will continue to appear, that are so simple to change but would make the world more inclusive to those of us who don’t fit into their small boxes.

I have always been totally open about my health, I personally have never seen any reason to keep any of it a secret, but unfortunately not every one feels that way. I honestly believe that if more of us were happy to simply say to someone, anyone and everyone, “I can’t do this because….”, the world would change for all of us. It is a fact that unfortunately none of us are aware of what life is like for anyone who isn’t medically perfect until we have lost some capability of any sort. I know that because I was just the same unless there was some sort of legal requirement that affected where I worked, I had no idea of the requirements for anyone with any sort of disability, small or large. Now I know that there are millions of us who’s lives could be made just that bit easier, if we just all used the voice we had to ensure that things are changed, not through legislation, but through something far more effective, public opinion. I know in the UK and I don’t see why it should be different anywhere else in the world, that once people are made aware of something if they find the changes aren’t happening, they talk with their feet and use other companies, shops, and venues, who do. These days it is so easy to force action is taken, social media has changed the world when it comes to public opinion having to be listened to, spread the word on Twitter about some company that isn’t living up to expectation and suddenly they change things.

When I started out on Twitter it was to raise awareness of life with chronic illness and being housebound, well with nearly 90,000 followers, I am getting there, but I have still only scratched the surface. I know from the responses I get that most able-bodied people who read my blog hadn’t the slightest idea what it is like to live with a condition like PRMS or Fibro and I am proud that I have opened their eyes to the reality, but there is so much more still to be done, but I can’t do it alone. I just wish that I could convince those with anything from arthritis to Motor Neurons to help educate every company that has something that makes their life harder than it should be, to actually tell them what and why those small changes would make all our lives easier. Legislation make business put in the right doors, lifts and so on, people power can make them change checkouts, forms, placement of furniture, phone services and anything else it might be, but most of all I expect it will be simply attitudes. I don’t blame anyone for the millions of irritations out there, they exist simply because businesses don’t know or haven’t thought about any of it before and the best people to educate them is us, those who want to use their service, but are hindered by the lack of understanding. There is one thing about life businesses always understands and that is making a profit, if they fully understood how many people give them a body swerve because of something they could easily change, they would do it.

I don’t know the numbers of people there are right now out there with a chronic condition and or disability, but if we all worked together rather than small groups within one condition, we honestly could make huge changes, not just to business but to the NHS as well. We just have to be willing to say this is what’s wrong, this is why it’s wrong and this is how simply it could be changed to make it accessible and user-friendly to millions of people who just want life to be accessible, millions who they probably don’t even know have a problem, because so many conditions are invisible.


Please read my blog from 2 years ago today – 24/10/12 – Family Attachments 

I am so tired today, it is one of those days that we all have from time to time, I just don’t seem to be able to get myself going, there is no oomph. I know we all have days when all we really want to do is curl up somewhere soft and warm and just stay there, not sleeping just relaxing. Part of me screams……

2 thoughts on “Working together

  1. Well said Pamela.
    I fear it will never happen though because of the bureaucratic nature of public sector organisations and also of ‘jobsworths’ who refuse to countenance any changes whatsoever.
    It’s maddening because they could probably save so much money too.


  2. I love your post. I have a mild form of muscular dystrophy and have love vision, because I was born with an optic nerve that is too small, probably related to the dystrophy. And I relate to your feeling about those long forms. My darling wife, who also has multiple medical problems, does a lot of the paper work, because I cannot read the small print on the forms. When I do fill them out, they can’t read my handwriting anyway, so they have to go through the forms with me. So I do get what you are saying on that note.

    An additional problem that I have found, as one with less than perfect health, relates to the current emphasis on wellness. It took us a long time to find a doctor, who was concerned with healing the sick, rather than being an athletic trainer. I cannot take being graded and degraded for progress on health goals. It is difficult to set health goals, when I don’t know what my body will or will not be able to do each day.

    I hope the changes you seek come to pass. I can’t understand why people with chronic illnesses or disabilities remain in their little demographic ghettos.


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