Why I’m supporting the When I’m Gone campaign

Jo Platt MP
Jo Platt MP

Many disabled people rely on the support of their families. Family members play a key role in their care and often become experts. However, there is much concern over what happens as those family carers get older. What happens when family carers are no longer able to support their loved ones?

Of the families Sense interviewed, 75% have no plan for the day that support is no longer available. 67% have profound fears about what will happen when they are no longer able to provide care. Families deserve to feel confident about the future, knowing that their loved one will be cared for.

I see this so often in my weekly surgeries where I meet constituents, and that’s why Sense’s ‘When I’m Gone’ campaign is so important. The report not only highlights this issue, but also makes some key recommendations which will give disabled people and their families peace of mind. In particular, the importance of long-term planning.

Family carers spend their time focusing on the day-to-day needs of their loved one and are less able to consider the future. One mother said “It’s difficult to plan for the far future, there’s always something in the way, like the next set of assessments or transition.”

Sense recommends that disabled people aged 25 and over and their families are supported to develop long-term plans for their future. These long-term plans should be comprehensive and bespoke to the individual, encompassing essential elements, such as housing, care and lifestyle.

Sense’s report also recommends that families have all the information they need to make sure the right decisions are being made for their loved one. Sense have therefore produced a toolkit that aims to equip families to do this.

Fundamentally everybody should have the access to quality specialist services, with staff that are equipped with the right skills to meet people’s needs. Families should also feel supported now, while they are still caring for their loved one, through access to short care or the provision of adequate support within the home.

Councils, commissioners, families and organisations, like Sense, must work together to make sure family carers have the peace of mind to grow old without fear of the unknown and the looming question of “What will happen when I’m gone?”

You can support Sense’s important work by signing their petition.

You can find out more about the When I’m Gone campaign on their website, where you can also download the toolkit to help families plan.

Author: Jo Platt, MP

Jo is a Labour and Co-operative MP for Leigh.

One thought on “Why I’m supporting the When I’m Gone campaign”

  1. Having been on both sides of the fence, social services budget holder and grandparent of a child who has Charge Syndrome and is deaf/blind with additional challenges, I still maintain disabled people have the right to be supported to live as independently as possible. Transition to adult services should be seamless, further education at all levels and opportunities that are available to non-disabled people should be put in place and the support to enable the person to live a full and valued life must be made accessible and achievable without parents having to fight every inch of the way.
    This should happen while parents are able to see and be assured their adult child will have the the right accommodation, care and support, stimulation, enjoyment and company of others whose company they enjoy for the rest of their lives and independent advocacy to ensure it remains when the parents are no longer able to support.

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