Involving People with Long Term Conditions

Written by: Ian Welsh, Chief Executive, the ALLIANCE

Published: 11/05/2012

The ALLIANCE's members networking events put the emphasis on the voice of lived experience.

When I opened the Alliance Scotland members’ networking event last week I wasn’t at all surprised to see so many old and new faces because our networking events have always been well attended (and have become increasingly so). However the speed at which places at this latest one, on the theme of ‘involvement,’ were booked illustrates just how fiercely people with long term conditions want to make their voices heard in the policy arena.

The event kicked off with a shining example of an ordinary person making their voice heard loud and clear. For those of you who haven’t come across Tommy Whitelaw, he’s a loving son who gave up his career running global merchandising operations for big names in pop music to care for his mum Joan who lives with dementia and has now found himself thrust into the role of a national spokesperson for Scotland’s hidden army of carers.

Tommy not only speaks with passion and emotion about his own experience of the devastation of dementia and the isolation of caring, but more importantly, he gives a voice to the hundreds of unpaid carers whose letters he has collected to share their experiences at the very top levels of government.

While Tommy demonstrated the power of individuals’ voices, Heather Fisken from Independent Living in Scotland talked about different approaches people can take towards involvement – as a nuisance, a nag or as a “Ban Ki-moon” elder statesman of the long term conditions movement! She urged people to embrace the latest “big thing”, co-production, and reminded them that they and their networks are their own biggest resource.

I am certain that all who attended on Wednesday understand that involving people with first-hand experience is a particularly powerful method of conveying a message. In order to effectively represent the voice of the 40% of Scotland’s population living with long term conditions, Alliance Scotland must ensure that those within our member organisations and those with no affiliation to an organisation are right at the heart of our work.

Alliance Scotland’ new Involvement Network will provide free membership to any individual with a long term condition. It will provide a mechanism through which Alliance Scotland can capture the stories of people living with long term conditions and a coordinated group of volunteers who can be supported to help with our own campaigns and to respond to the requests placed upon us by external partners in government, health, social care and higher education.

We want the Involvement Network to be user-led and we want members to reap the benefits of gaining new skills, confidence to engage and support from their peers. Alliance Scotland will support people with long term conditions to influence change and provide opportunities to make their voice heard in a variety of forums where that voice has previously have been silent or drowned out by others.

To find out more about the Involvement Network, please contact kerry.ritchie@alliance-scotland.org.uk

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