I attended my local MNDA meeting on Sunday and met a newly diagnosed woman called Sylvia. She has totally lost her speech and was given a Lightwriter. I detest them, possibly because I was given one with the wrong switch, so couldn't operate it. I appreciate that they are possibly the cheapest communication devices, which is why the MNDA provide them, but there are better options available. Unfortunately, Speech and Language Therapists (SLT) do not have a budget to provide communication equipment, which I find ridiculous, and I'm going to help my SLT address this issue in my Borough.
Back to Sylvia....she had her Lightwriter with her, along with a list of problems that she's experiencing with it. Me thinks 'easy, I'll help her', but after an hour I had to admit defeat. Whoever set it up had hidden the settings menu. Sylvia had told her SLT who has done nothing to help. Sylvia wrote to the supplier who didn't write back. Imagine being unable to speak and having the technology to help you but no support for that technology. Frustrating isn't it?
This is Mick Ferguson's story: 'Hi Sarah, here's one for you. My nurse got in touch with my Occupational Therapist to find out about a wet room. So after 4 weeks we get a visit. I might as well not have been in the same room as she spoke to my wife more than me. I went out of the room to go on my nebuliser for 5 mins and when I came back in the room I heard her saying to my wife 'if my boss thinks he will live for more than 5 years we might be able to get one'. So I wrote on my board, I will try to.....'
Shouldn't health professionals have some sensitivity? Hopefully, Mick will survive for a long time, what then?
I just received this email from Louisa Norman, whose father has MND and hasn't been given the equipment he desperately needs: 'Today after much talking on the phone to this Steve, Occupational Therapist, he agreed to come out and reassess dads needs. He sat in the same seat as he did over a year ago and asked us, "What do you want me to do?" I answered, "Could you tell us what you can do rather than we ask you, your supposed to be the professionals!" He didn't quite know what to say. Brenda, (Dads wife) kept asking why things weren't done when we originally asked for them because if they had of been we wouldn't have these problems now. All his answer to that was, "we're here today to discuss what we can do for Barry not what we haven't done for you in the past." We have had no support whatsoever from the MNDA. We have no MND nurse in our area and are literally fighting for all we are worth. Dad's motivation for living is deteriorating too and I'm frightened that unless we get these things sorted out he will give up completely. We need help and support and have nowhere to go with this, except possibly the press, to expose the flaws in the system. Please help us Sarah, how can we do something about this?'
I will try to help the Norman family to the best of my abilities. I gave presentations to hundreds of health professionals, outlining the problems I experienced, but it obviously wasn't enough. My Children's Social Services case is still closed (article). The fight continues.....
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This post makes me feel so helpless. People should do their utmost to help pALS, not be so indifferent. Have you read the book from Joss and Rosemary Acland? I think it was "my better half and me". She seemed to get much more help with when she had MND.
ReplyDeleteThank you for your battle and for being so assertive.
Love and greetings Lianne
It worked! It worked! It WAS my bad after all.
ReplyDeleteOkay, here goes the comment again:
I am so sorry that the children's services case is still closed...it's ridiculously unfair, as are all the experiences of MND families that you've shared. I'm wondering if there's a sympathetic professional and/or academic who you may be able to partner with on this...perhaps for establishing protocol, or training purposes, or tightening policy and accountability, and politician(s) who may assist as well...I'm thinking of the model of my local (Ontario, Canada) social services agencies to assist abused women and women in need: the work they have done to make changes has required a great deal of time, and people in positions of influence, to accomplish their goals. As wonderful as you are, I worry that this is systemic, and if so, requires some infrastructural tweaking. Organizations tend to be mountains when it comes to moving them even an inch!
Still, everything you do is phenomenal and extremely valuable - and, I'm sure, very much appreciated by the families. My very best wishes to you, as always!
Mary Jo Winkler-Callighen/"Gran"
It is great that you are doing this blog and reaching so many people!
ReplyDeleteI am appalled that basic needs such as the provision of adequate communication and bathing equipment are not being met but with your help, I am sure that this will change - it's just a shame that everything is a fight... and I remain disgusted that your case with Social Services is still closed.
There is only one thing to do and that is to carry on and fight the good fight my lovely Sarah..... xxx
hi Sarah, i can only echo the above sentiments (re social services) and remind you again of how much of an inspiration you are to so many people. Your comments on those experiences made me frustrated. I couldn't belive the insensitivity of that nurse. We were incredibly lucky (i have come to realise) when we were caring for dad, his GP was extraordinary and did everything he could to get us as much help as possible - even phoning social services on several occasions when we were banging our heads against the wall of bureaucracy.
ReplyDeleteRe the lightwriter - i can only relate the fact that dad struggled immensely with his. He found it cumbersome and frequently got frustrated with it to the extent that he ended up preferring to sit and watch tv rather than have to try to communicate using it. His MND nurse (another fantastic individual) helped him programme a few bits in but it was really not the answer to his problems. His frustration with it increased as his dexterity decreased and he found typing to be really tough. It was further compounded by frontal lobe dementia (which i believe is often seen in people with bulbar palsy) which meant the process of even thinking through how to spell the word was enough to send him a bit nuts! He tried with it and doubtless it did sort of help on occassion but i think you're right to say that so much more ought to be being done. seeing him shut down because commnuication became impossible was one of the saddest parts of looking after a man who had once been so gregarious.
much love to you as always sarah, xx