A year of When I’m Gone

Young woman sitting in a chair holding her arms out while a woman smiling playing with a pink ball

Today marks the one year anniversary of our When I’m Gone campaign.

There are approximately 1.7 million disabled adults being cared for by family or friends who provide support day-in and day-out, with little opportunity or time to have a break. As many of these family carers get older, they might begin to think about “What will happen to my loved one when I’m gone?” And for many, the answer is unclear. This is why we launched When I’m Gone in February 2018 – to help disabled people and their families plan for the future and give them much-needed peace of mind.

As part of the campaign we spoke to many families and disabled people and from the beginning, we found that a great deal of them didn’t know where to start when it came to planning for the future or felt overwhelmed by the prospect of thinking what to plan for and look towards. Worryingly, we found that one third of councils do not know how many disabled people who live in their area rely on friends and family for their care and support. Additionally only a quarter of councils routinely support families to make contingency plans for future care options.

So we developed a toolkit to help families make plans for the future and understand what needs to be considered, this was shared with local authorities across the country via their information and advice teams and we’ve received great feedback. One service told us “We think your toolkit is a fantastic resource and would very much like to share it with more families we support.” We’ve also heard directly from families who have told us that the toolkit has directly provided them with the skills necessary to contact their own local services.

What have we achieved together and what’s next?

Over the past year, we’ve worked to raise awareness of this issue and influence change so that families can have real support to plan for the future and know where to turn when support is needed.  We appeared on BBC Breakfast and in many other news outlets last year, to launch the campaign and raise awareness of the issues.

As part of the campaign we also launched a petition, both online and in our shops, which has received over 35,000 signatures. In December 2018 we delivered this petition to Number 10 Downing Street to show our  commitment to this issue and highlight its importance. Joining us on the day were Inge and Noreen, who have featured as part of the When I’m Gone campaign. Inge said “It is wonderful that Sense was prepared to run a campaign on such an important issue for me. The response to the petition shows that it is clearly an issue for a great many other people as well and I would like to thank all those who kindly signed this petition. Noreen and I were very happy to help take the petition signatures to 10 Downing Street. I hope this will raise the issue further and that it will bring positive results.”

We also spoke at the Conservative Party Conference in October 2018 where Keith and Geordie shared their story. Keith passionately spoke about the challenges facing families and said “Like so many families, we worry about what will happen in the future but I will fight to the end for Geordie.”

Keith (the father) is sitting in a chair in the background and Geordie a young boy sits playing with a spring toy
© Mike Pinches 2018

But we won’t stop after a year of campaigning. We’ll be continuing to raise these issues with stakeholders and influence government on both a national and local level, to ensure that disabled people and their families will have the support they need to plan for the future. We can’t do this without your support though, so if you’d like to keep up to date about  the When I’m Gone campaign, as well as our wider campaigning and public policy work please subscribe to our campaigner network.

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