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Elaine Cotterill, In Control trustee, talks about what it means to be 'in control' this Christmas

I can't tell you how relieved I am to be 'in control' this Christmas.

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.

Elaine and John

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 Caroline.

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 spontaneity.

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 not.

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 choose.

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 New Year?

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 disabled!

By Elaine Cotterill

This post has been published as part of our #BeInControlXmas social media campaign, find out more about how you can join in.

2 comments for “Elaine Cotterill, In Control trustee, talks about what it means to be 'in control' this Christmas”

  1. Gravatar of Sally PercivalSally Percival
    posted 10 December 2013 at 18:09:16

    Great blog Elaine. Stories like this really get the message out about authentic choice and control.

  2. Gravatar of Shila HShila H
    posted 13 December 2013 at 00:06:52

    Whenever I read about M.S, I impulsively want to share my own --experience hoping that it will help someone someday. I was diagnosed in 1996. The hospital did not see me after my diagnose. It was 'just go home & think of England.' My vision suffered, followed by numbness in left leg, slurry speech...etc...Petrified of this condition which had some 'weird, undescribable ' symptoms, I eventually read up on it & followed a sugar-free, gluten free diet for 5 years. No bread, No chapattis, no cakes, no pasta...OUCH !! it was a bit painful at times but whether it was the diet...or.something else..I'm relatively o.k with my m.s. & have had no relapse .

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Last Updated : 10 December 2013. Page Author: Laura Bimpson.