I can't tell you how relieved I am to be 'in control'
Having literally felt as though our lives had been
blown apart with my wonderful husband's diagnosis of multiple
sclerosis (MS) in 2004 and a huge relapse in 2006, we
came across In Control at an awareness conference hosted by
our local authority, who funnily enough, had asked me to
speak about how wonderfully supportive they had been when our
family was in crisis and struggling to cope.
There is no denying that we were extremely
'grateful' for the support being 'offered' by St Helens; our lives
were gradually becoming 'normal' again under very abnormal
circumstances. However, In Control were also at that
conference and telling us all how it could be even better, leading
by example with the story of Joe Tomlinson told by his Mum
It's been a long and difficult journey ever since as
well as a huge learning curve, driven my insistence that our
local authority's 'interpretation' of personalisation was based on
them taking control, gatekeeping and not really allowing for
We were told on a regular basis that we couldn't do
this or that - we don't allow this or that. I was constantly
challenging them all the while trying to support my husband through
the most difficult time of his life. I am sure ruing the day I
was ever invited to THAT conference!!
But through the In Control Partners Network, lifelong
friendships have been formed, many of which started with our tales
of real life experience; struggles with bureaucracy and constant
banging of heads against walls out of sheer frustration, the fear
of review, the changes imposed on us and many other issues.
At the same time however, small steps were being made which made a
real difference and felt like we were at least moving
forward. We found that together - as a Partners Network - we
could make a difference, together we felt supported and not alone,
together anything was possible.
In Control has saved us literally as a family. If I had
not attended THAT conference, I would not have realised that while
we thought we were becoming 'normal' again, we were in actual fact
We thought that we would have to have services 'done' to us
and be grateful. Now we know we can choose how my husband's
support is delivered in a way that works for him and us. He
may have MS but it doesn't have him; he chooses what to do, how to
do it and who with.
And why shouldn't he? Just because he has a disability
why should that stop him from doing anything he chooses to do
disabled or not?
That is why this Christmas is one of relief and
happiness. Although my husband struggles daily, his MS
is reasonably well controlled. The team at St Helens ASC&H
actually 'get it' and have worked so hard to get us to where we can
actually take control of the choices we make and the life we
There are still difficulties to get over but we work as a
team using common sense and an attitude of being firm yet
fair. The challenges now in the main getting the
financial department to see personalisation from a social care
perspective and not an accountant's 'tick box' one - which is so
ridiculous, as its very rarely cost effective and wouldn't help us
meet identified outcomes!
This Christmas will be perfect though. We have a team of
Health Care Professionals with us every step of the way
supporting us and not working against us.
This Christmas will be a time for family and friends to
be together to look back on a year of great change, challenges,
tears and laughter. We have a happy home and family which
will be made even more complete as we are about to celebrate the
arrival of our first grandchild at Christmas.
We are so thankful for the life we have and our wish for the
It's that more and more people come on board the
'personalisation train' and start to live a life that is better -
one that they can take control of and be enabled not
By Elaine Cotterill
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