Opinion: Carers put on a brave face
PUBLISHED: 14:30 11 July 2019
On a richter scale of emotion one of the hardest experiences for anyone must be having to hand over their child: the dearest, most fragile person they have ever loved.
My parents were retired before they were finally forced to admit they could no longer cope with my sister. Her behaviour had worsened to the point that she was unmanageable. Physically she was strong but looking after her was like looking after a fully grown toddler.
Our family life shattered, it still took a long hard battle (helped only in the end by our MP and the local press) to obtain funding for a suitable care home. My parents never stopped loving her and visiting until the end of their days.
Why is it that we can willingly fund our NHS to care for people who are seriously ill and require medical treatment - but find it so hard to be generous to those who have learning disabilities?
My sister was brain damaged after contracting encephalitis at 11 months. She was later diagnosed with autism. She screamed and rocked, on and off, day and night, for years. Its toll was heavy not just on my parents, but us children - we all fell behind at school in our own individual ways. If policy makers are serious about reducing inequalities of opportunity then they need to look at the effects of disability on the family!
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Severe learning disabilities sadly last a lifetime - my sister is 50 now, calmer and more manageable thanks to the specialist care she receives in her wonderful care home. But her stability is still entirely dependent on the familiar staff around her - and the support she still gets from us siblings.
Last week's cross party plan put forward by the Lords Economic Affairs Committee calling for NHS style provision is an obvious solution. Cognitively the learning disabled are children. And just as children need schools, and the sick need doctors and hospitals, our learning disabled require a centrally funded provision of specialist care.
Localism - the notion that adult social care can be left to the local authority - has failed. Here in Haringey since 2010 virtually all its in-house drop ins, day centres, respite and residential homes have been closed.
Carers learn to put on a brave face. We see this at the Abide church carers coffee group we run in Crouch End. But underneath life is very, very tough. They rarely get a good night's sleep, or a break. Our day trip to the seaside is often all they have.
Watching Johnson and Hunt compete to see who can make the biggest tax cuts reveals their failure to see that investing in a good care system for learning disabled will free these parents to work, help families to function, and create jobs.
This would contribute to better health anid a bigger economy. And a much happier, kinder country.