When I'm Gone

75% of disabled people and their families have no long term support plan. Families need help to plan for the future.

As part of our campaign for disabled people and their families to receive more support, we’ve partnered with Carers Week (10  – 16 June 2019). The week champions carers across the UK, celebrating their amazing work and calling for them to receive more support.

The theme this year is ‘Getting carers connected’ whether that be to financial support, practical support, via technology or to friends, family and the wider community.

Help us celebrate Carers Week here.

Many disabled people are supported by their families. Family members play a key role in enabling and empowering them, becoming experts in their care. Few families have felt able to put plans in place for the future.

  • 1.7 million disabled people are supported by their friends and families. 75% have no plan for the day that support is no longer available.
  • 67% of carers have profound fears about what will happen to their relative when they are no longer able to provide care.
  • One third of local authorities are unaware of how many disabled adults in their area are currently being cared for by family and friends at home.
  • Only a quarter of councils routinely provide support to make contingency plans for future care.

In 2018, over 36,000 of you signed our petition calling for families to receive more help to plan for the future of their loved ones care. On 4th December 2018, we took your signatures to 10 Downing Street to show how important this issue is to us and to the people we support.

A group of people standing in front of Number 10 with box of signatures

What we've called for

We believe that disabled people and their families should be able to have confidence that they will always be well supported. We’re calling on national and local government to:

  • Create a duty to ensure that plans have been put in place
  • Support families to make plans for the future
  • Provide clear information about how the system works
  • Ensure quality specialist services are available             
  • Provide enough funding for local areas                                      
  • Provide more support to help families now

What we're doing

Over the course of the campaign, Sense will raise awareness of the issue locally and nationally to ensure that disabled people and their families get the support they need.

In February 2018, we published our report, When I’m Gone. It explains the issue in detail, tells families’ personal stories and sets out our recommendations for change.

We have also produced a toolkit called Decisions to make, steps to take. It is aimed at disabled people and their families, to guide them through the process of making choices about the future.

For an overview of the report and campaign, download our press release in accessible word format.


A gift to Sense, no matter how large or small, can make a real difference to the lives of people with complex disabilities.