Neurological conditions
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Winterbourne View

josfromglosjosfromglos Member Posts: 19
edited August 2016 in Neurological conditions
I have MS..., I also have a daughter with GDD who is totally dependent. There is a possibility that my daughter too might end up in a home at some stage, a 'home' like Winterbourne View (WV) in Bristol, although we will try our hardest to keep her At Home, especially now not less than 8 (?) ex 'carers' have today been seriously punished for their crimes, which is the utter disgusting way they 'treated' their needy clients at WV (see internet), with lenghty prison sentences.

I used to work, as a carer, at a college for disabled students nearby. I was forced out after only 6 months because of........ because of having MS. One disciplinary hearing after the other, because I was accused of negligence towards a student (who I liked a lot!!!!!, but unfortunately, he could not speak up).
I appeared to have forgotten a strap on that student which was blown out of proportion.
Till today I am convinced that they realised that I was more of a risk than anticipated (I informed them about my MS during the interview), and waited for the right moment to 'rehabilitate' themselves...

Yes, I did have problems because of my condition, physically and mentally (esp memory and concentration wise..... fatigue!), but I very much liked the contact with the students.
Still, they gave me a 'second chance' (according the rules I'm sure) as a 'bar person' and other jobs whereby 'speed' was essential.....
What a shame that speed is not one of the best assets of MS, and I should not have dropped that plate... (I blame the righteous look of the bar supervisor that made me feel very unsettled...).

....to (finally) come to the point that I am trying to make..... Disabled workers, as part of a team!, are important when dealing with disabled clients, students etc. They more genuinely understand the needs of the people they need to assist, and are therefore a valuable asset to any organisation whereby care is involved!
Perhaps, at first view, not the most practical of choices, but I cannot imagine that the situation at WV would have gone out of hand as much as it did if eg a parent of a disabled child would have been a member of the work force!! (or better more than one).

To avoid 'problems' as at WV, do you not think that it might prove very useful to make it obligationary (as much as I dislike the word!) to have at least 1 or 2 (or more) officially disabled members (depending on the 'size' of the company/ institution), in the work force as they are 'able', as workers, to fill the gap between 'patient' and carer!

What's your opinion?

Replies

  • josfromglosjosfromglos Member Posts: 19
    ......sorry, of course I should have said 'Disabled workers, ESPECIALLY WITH DISABLED CHILDREN/RELATIVES/FRIENDS NEXT TO THAT, as part of a team!.....
  • AlistairAlistair Member Posts: 104
    Hi josfromglos, I watched that Panorama program about Winterbourne Stoke and the next morning phoned my daughter's social worker and made her promise that if anything happened to me she would never,ever, let my girl be placed in an institution like that (she hadn't watched the program). I'm currently trying to get my eldest son and her half brother legal guardianship for her if anything where to happen to me.
    I too, lost my last job because of my (I hate to use this word because of the incomparable difference between our conditions) disability and my caring responsibilities.
    My job was to support people with disabilities in their work place. It always struck me that the employers who one would expect to have more compassion where often the least understanding as to the needs of our clients. Two examples are a large NHS hospital and a residential home for the elderly!
    So, a resounding 'yes' in agreement. But I'd like to propose that we go further and put these people who have first hand experience of disability in management positions. I have recently come across one worker who told me she was also a carer but when I pushed a point she was forced (I believe) to 'close ranks'. Very frustrating as all I was seeking was information and support.
  • josfromglosjosfromglos Member Posts: 19
    Thank you for your reply Alistair. I seem to have found that many similarities in your story, that I feel in a strange way 'excited' (in a constructive way that is).
    I do not know what your condition is but can only assume that it is more on the psychological side, as I do not pick up any physical issues (please correct me if I am wrong!).
    For your information, 'my' MS effects me physically in the first place (fatigue, tripping, issues with 'walking' -balance!- , etc etc), and next to that it effects my concentration, memory, etc. It is unavoidable, especially in our situation (parent as well as child have serious issues), that stress 'attacks' both you and I on the psychological side too on occasion!

    You are so right on the issue of working in care while having serious problems yourself......
    I blame the 'risk assessment culture' (connected to insurance etc.).
    I strongly believe that there is too much emphasis on the physical capability of A Carer, and that the emotional capability, which people like us certainly have!!!!, is neglected, it only excists in books etc. (you know the bla bla bla books plus the ruling that companies should have a certain percentage of 'disabled' workers, which is such a large and variable group of people!).
    I am convinced that the 'carers' at Winterbourne View had to read those books!!!!!!

    Do not get me wrong, these 'instruction' books are very useful, as long as their contents are consumed by genuine carers!, and I do have the impression that some carers take on the job for all the wrong reasons!.

    By the way, I remember applying for a job in a new residential home for the elderly. I was questioned by I think a representative of the new residents, and was put to the test with regard to 'where to store the medication etc.'...
    I desparately failed to give the right answer according to them, surprised as I was by the 'test'. Nervousness has a very bad effect on MS, also stimulated by my physical issues. So they probably dìd have a point...... or did they? Perhaps I could be the right person to have a chat with the residents, share their worries, have a laugh etc?
    No, this was a typical commercial set up, in which there is no place for a 'disabled' carer (considering they must have paid a lot of money for their 'placement'), and 'visual quality' comes first..)

    This reminds me of an elderly lady behind the check out at Morrisons, when I was visiting, as a carer!, with my young disabled client (CP) in a wheelchair, a few years ago now...... When we were ready to pay, she completely ignored my client, assuming he was also mentally disabled, and only spoke to me....
    At that moment my client burst out in saying (excusez mon language..) 'Oi!, I'm here!' (trying to hold up his wallet..), 'speak to me, he (pointing at me) is f**king more disabled than I am!' :)

    I am very much in a grey area at the moment.....
    I have been declared unemployable due to my condition-in-combination-with-my-daughter's-condition..... (I am convinced that I would still be working if my home situation would be less stressful!!).
    I was quite 'happy' with that in the beginning, assuming that it would take away a lot of unnecessary stress...
    However, 'cut off' from society plus financial issues have created another sort of stress, and I could do without!
    So let's keep on talking, two (or more) know more than one!

    (To other readers: please join this discussion mainly focussed on a situation whereby ànd the parent ànd the child have serious issues, and that parent still wants to 'add value to society')

    I'll stop my rambling now and have a well deserved (although my wife always tells me that no one 'deserves' anything...) cup of Senseo coffee! ('the best you can have'!)


  • AlistairAlistair Member Posts: 104
    Hi josfromglos, good to hear from you. I came to this site tonight for another reason and am going to look for another more relevant thread (or create a new one). So I'm sorry if this is a bit brief. Hope you look at it 'cos I'm sure it'll have some relevance to your caring responsibilities.
    You're right, I have been experiencing quite bad depression what with a 'boonkers' wife (no longer together, thankfully!), a recently graduated step son who has contributed nothing since returning from Uni, unemployment and, of course, my lovely but demanding daughter. I think you understand why I don't like to compare my disability with yours especially as I have first hand experience of MS.
    Love your story about the lad with CP! I've said it here before and it's been said many times but it is society that disables people.
  • josfromglosjosfromglos Member Posts: 19
    I can only wish you 'good luck' with the situation Alistair. We are indeed also expecting one and another soon, and we are not looking forward to it!
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