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(UK) E. Midlands: 'Burnout,' parents of disabled (autistic) children; more funds for respite

July 28, 2023, Leicestershire Live: Carer lifts lid on 'burnout' looking after autistic daughter amid lack of respite care

Central England

An Ashby mum has opened up on the stresses of looking after her autistic daughter amid new research which shows carers are more burnt-out than ever before. Chantel Fry says looking after her daughter Madison means her other children often get “overlooked” and that caring is exhausting on many fronts.

Chantel lives in Ashby with her husband and five children. Twelve-year-old Madison has autism that requires much care and attention. The hard work involved often leaves Chantel burnt out, with respite care the only time she and her husband get a chance to breathe.

She said: “Madison’s extra needs mean that my other four children often get overlooked at home. When you have a child with additional needs you don’t realise how much emotional and physical energy is spent.”

Chantel’s exhaustion is not alone as new research conducted by disability charity Sense has found that 57 per cent of carers in the East Midlands are suffering from burnout due to providing round-the-clock care. The research revealed that family carers spend an average of 35 hours a week providing basic care and support, such as personal care, feeding and dressing to their loved ones.

For many, including Chantel, this is on top of working their actual jobs, with the long hours adding to their load. Sense’s data also revealed that 49 per cent of East Midlands carers do not receive support to take meaningful breaks. One in five also revealed they were unable to remember when they last had a break.

More shockingly, 51 per cent of carers questioned revealed they had not had a break in two months. Just six per cent say they had had a break in the past week….

recharge our batteries is a big thing for us.”

However, respite services are not readily available for all carers, with the Covid-19 pandemic causing many services to pause - with parents claiming they haven’t been restarted since.

The cost of living crisis has added to the exhaustion, with Sense’s research revealing that affordability of respite services was a big barrier for many. Lack of information on what support is available and long waiting lists were also big turn-offs for carers caught up in the crisis. Sense is now calling for a rethink on respite services and has called on the Government to commit to long-term funding for specialised services as part of its Give Carers a Break campaign. Richard Kramer, chief executive of Sense, said: “Caring for someone with complex disabilities is often demanding, non-stop work, and takes its toll physically and mentally….

"Many are simply burnt-out. We need to show that we value these incredible individuals in our communities. Local and national government must commit long-term resources and funding to support families.”

Chanel Fry and her autistic daughter Madison live in Ashby (Image: Sense)


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