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“It took me eight months to get funding and I’m still facing another long wait to get access to respite. The process is leaving me feeling more tired and overwhelmed”

Leanne Belch is mum to Amber, 6, who has spina bifida and hydrocephalus and Laila, 12, who has arthritis.

Amber has had more than 30 operations in her young life and needs regular care and medical appointments.

Leanne started the process of applying for respite with her Local Authority back in April.

In January, they learned that they have been successful in receiving respite funding, but the wait is not over. She now could face up to a year to wait for an appropriate respite place to become available:

“We’re grateful to the Council for this funding and to the support from Spina Bifida Hydrocephalus Scotland throughout this long process. However now the wait begins to actually get respite in place. The whole thing just feels endless. 

“Everything seems like a battle when you have disabled kids. Why can’t it be easier? We’ve been through so much as a family.

“The whole process is leaving me feeling more tired and overwhelmed. I needed respite eight months ago and I need it even more now. It is so difficult to get support and there are so many families struggling out there.

“It’s great that politicians have made access to respite a right, but right now, the way the system is, the only thing that’s happening is people are just waiting and waiting.

“There’s no point in having a right to something that you can’t get access to when you need it.”

Leanne Belch, from East Kilbride

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