Black and white photo of Jane with her daughter, Faith. Sense launched a campaign highlighting the difficulties for families with children with complex needs.

Yesterday, we launched our #ForgottenFamilies campaign highlighting the difficulties for families with children with complex needs. Jane lives with her daughter Faith, husband and son. Here Jane writes about her own experience of the lack of support her and her family have been experiencing.

Dear Secretary of State for Health and Social Care,

My name is Jane and I live with my daughter Faith, my husband and son in Liverpool. My daughter, Faith, has complex disabilities, which include deafblindness and autism. She requires support on a 24/7 basis.

The pandemic has been hard for our family. We usually receive education and social care support from our local council, but when lockdown started, it was stopped. Since then, we have been left to take on most of the caring responsibilities for Faith ourselves. Faith’s respite facility, where she used to spend around 2 days a month, has also closed to all respite users.

The family have done the best we can, but the experience has been incredibly difficult for Faith, and it has heart-breaking to watch her regress during this period. She is showing signs of anxiety and frustration, rocking back and forth and making loud noises, behaviour that was rare before the lockdown.

I feel a constant guilt that I’m not doing enough for her. As a parent and carer you do just get on with it, but I have become increasingly weary and low in spirits as time has gone on. Providing care with no respite is tough, but the hardest thing is the lack of information about when the support will be reinstated. I feel like I’m constantly chasing people for updates and getting nowhere.

Five months down the line and social care support has now just started to kick in but on a very part time basis (to date 1 half day a week and one 1 hour visit). I know other families who are in the same position as mine, who feel like they have been forgotten during the pandemic and are desperate. We are one of 1.7 million families caring for disabled adults.

Sense recently surveyed a thousand families, and more than two thirds of families (75%) received no information about their support and care being reduced prior to it happening, with a third of families (34%) still waiting for the support to be reinstated. More than half (52%) said that the health and well being of the family have been affected by the experience.

We know that this is a difficult situation but we must be able to come up with a safe plan for reintroducing support for families. We need government to recognise how difficult lockdown has been for families who’ve had community support withdrawn, and to secure and reintroduce flexible packages of support for disabled adults and their families.

We need to see:

• Government taking clear action and outlining next steps for how they will reintroduce community services and other support that families and carers need

• Government providing specific and clear information and increased communication with disabled people and their families about any changes or reinstatement of services going forward.

• Government providing necessary funding, support and resources to LAs to flexibly deliver care and support for disabled people and their families.

Will you support Faith, our family and all the other forgotten families across the UK by taking action to reinstate community support for disabled people?


Jane and Faith

You can show your support by standing with faith and signing the open letter to the Secretary of State for Health and Social Care.

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