Dying Without a Voice
Dying Without a Voice
On the 27th January, the All-Party Parliamentary Group
(APPG) on motor neurone disease (MND) will launch a new report into access to
communication equipment for people living with MND. What the MND Association
say:
“We expect the report to show the shocking truth: people
with MND are dying without a voice.”
What they are asking us to do:
“Please join our online flash mob and help us make a lot of
noise about this issue. This online flash mob will help us raise awareness of
MND by harnessing the power of Twitter and Facebook, sharing the same message
with lots of people, all at once.The more people who sign up, the louder our MND voice will
be!”
I signed up today. This campaign has got me thinking. It’s
not just about communication at home and in social situations. So many MND
patients in hospital are being failed by the NHS, because when they are admitted,
they don’t have access to the technology which will allow their thoughts,
wishes and feelings to be communicated to staff. Think of when you are in
hospital, perhaps unable to leave the bed unaided, all you have to do is press
the bell for a nurse to come and you can tell him/her what the problem is, what
help you need, how distressed you are feeling, that you need more pain relief
or that you need to go to the toilet. The MND patient without a voice must rely
on his/her carers for this and even then, they may get it wrong, or they may
not be there.
Please sign up and add your voice.
Roch's Voice
It’s got me thinking, too, about Roch’s voice. He can still
speak after five years with MND. He may die and still have his voice at the end, but there are no guarantees. We both fear a
day when he can no longer speak. I have lost count of the number of family carers who have told me that
the worst loss for them was when their relative lost the power of speech. One
woman, whose partner is living with MND told me,
“We have to argue via email!” Another, five years after the
loss of her husband to MND, had tears in her eyes when she said,
“It was
dreadful when I knew I would never hear his voice again.”
When I was pregnant, Roch got into the habit of reading
aloud to me at bedtime. In the early hours of labour with both Kate and Tom,
he read to me to distract me. We continued this reading habit for years and
nothing delighted the children more than when Daddy read to them. Sometimes his chosen reading material would
be the book he was currently reading himself, which more often than not would send
them off to sleep in minutes! However, he did read ‘The Lord of The Rings’ to
Kate when she was nine, thus happily fostering a life-long passion for Tolkien.
Tom, I remember was the lucky auditor of ‘Ender’s Game’ by Orson Scott Card (which
recently made it onto the big screen). Beatrix Potter had had her day by then.
Recently, Roch has begun to read to me again a little at
night, but only if his voice isn’t too tired. He doesn’t like anyone to read to
him, although I have offered. I think it’s a bit of struggle for him to speak with
the ventilator mask on but I’m usually asleep fairly soon (especially if it’s
American Civil War memoirs). We’re just trying to make the most of his voice,
while he can use it.
If he does lose his voice, we hope that he will have access
to the new Eyegaze technology so that he will still be able to communicate. I know he fears an admission to hospital
sometime in the future, bereft of communication devices, unable to speak.
Timing is crucial in MND. There can be a six
week delay in receiving communication equipment. That could mean dying without
a voice. So this campaign means a lot to us.
Please sign up and add your voice, too.
Losing the ability to speak was my partner's greatest fear but luckily he was still able to speak until the day of his death so we didn't have to deal with the problems that would have arisen.
ReplyDeleteThis is such an important issue and I have signed up.
Eileen, thank you so much for your comment and thank you for signing up. x
ReplyDelete