Winterbourne View: As carers, sometimes we reach breaking point. Please don't make a difficult decision even harder

Society shouldn't judge all carers as abandoners and all care workers as predators.

Nicky Clark and her daughter Emily, who has autism.

This week Norman Lamb, Minister of State for Care and Support, gave the Government’s final response to Winterbourne View.

The findings and the comments about that particular hospital were both chilling and crucial.

In October, six care workers were jailed on charges of shocking patient abuse at Winterbourne View. Panorama footage showed care workers abusing patients, with physical abuse and threats.

The abuse was horrific to see, but my biggest worry from the report was the claim that people with learning disabilities, autism and challenging behaviours must be looked after and supported "at home".

How many councils reading that report and implementing the changes will think of home as the family home? Because I assure you adult assisted residential units, residential schools and respite providers can cost equally as much as Winterbourne View (£3,500 per week).

Contrast that cost in these days of austerity with carer’s allowance (a benefit paid to full time family carers) of £172 per month - until they potentially remove that benefit too of course.

According to the report, when the CQC investigated 150 provisions for learning disability they only found one like Winterborne View. It was Winterbourne View.

Yet it is now setting the narrative.

I hope if they do close every treatment and assessment unit if they ensure decent and adequate provision is accessible in their place at people’s homes, because closing them down and returning learning disabled people to their families isn’t necessarily the answer.

Not for anyone except budget holders.

The perceived wisdom on caring for people with learning disabilities is that the only and best place is at home; that residential placements are all institutions and that all institutions are Winterbourne View. This is true for many learning disabled people but not the case for all with challenging behaviours.

Everyone needs to remember what challenging behaviour actually is and actually means. As a result of doing our best to care for my daughter, my coccyx and fingers have been broken, our house was on lock-down and we existed on adrenaline and very few hour’s sleep. The house is run to the needs of the person you care for night and day and socialising is pretty much out of the question.

You cannot demonstrate unchecked emotion, there can be no raised voices or unexpected visitors. There can be no unplanned events or changes of routine of any kind or it prompts a meltdown so devastating and prolonged that everyone is left upset and exhausted. Then when you finally do leave the house, your loved one is found too challenging by the public and so will verbally abuse you all.

Because that’s what caring for someone with challenging behaviours is actually like.

The pressure on carers to keep caring beyond safety, beyond reason and beyond endurance is huge. And when learning disabled children with autism and challenging behaviours pass into adulthood, their need for protected independence is also being ignored.

The current situation is turning a financial imperative into a moral choice. If the choice is abuse or stay at home which would anyone choose?

If all residential placements were local, well maintained well inspected and socially acceptable, then everyone would benefit. Good and bad provision costs exactly the same, but making it an issue of “abandonment” is the real saving because people are emotionally blackmailed into not fighting for it.

My girl has finally found her voice and her life again after moving to a care home. She made the transition after an extreme bout of her violence so extreme it frightened her as much as it did me. She was miserable. She wanted friends, but friends when you have a learning disability are either few or non-existent.

She had given up respite, given up school and given up hope. Staying at home all day refusing to go out.

As a sandwich carer between my mum with Alzheimer’s and two daughters with autism, they all had needs which clashed. Emily couldn’t cope when Grandma regressed to the mindset of little girl in a woman’s body who held my hand and had to be fed. She looked like grandma and sounded like grandma, but she behaved in a new way which is frightening for someone for whom routine and expected outcomes, is everything. In the end they couldn’t be in the same room.

I cared for mum on my own for 18 months; three meals a day with 12 tablets at 12 hourly intervals. Then I brought in a care package. Mum continued at home for five years. She began to wander off, and the final straw came when she put her electric kettle on the stove and went out for a walk. When she finally found her way back, her kitchen was on fire. There were fire engines and neighbours and quite a crowd which she fought through, running back inside to find her cat.

Alzheimers took many things from her but not her capacity to appreciate vulnerability or her ability to love.

As a direct result of moving to a care home, my beautiful daughter is thriving at school, and every day hearing her happiness on the phone when she tells me about all she’s doing is a joy. She is joining the community for things like swimming, the zoo and youth clubs, and her experiences are compounded by parties and self-esteem and friends who really value her existence for the first time in her life.

Mental illness is routine for carers and breaking point is common when carer burn-out is reached and no one listens.  Carers can be as young as five or as old as 85 and they all manage exactly the same level of stress and exhaustion.

If society judges all carers as abandoners and all care workers as potential or actual predators, there will be no need for councils to try and spread already thin budgets even further.

When I visit her, it’s extremely hard to leave. Letting her go has been the hardest thing I’ve ever done but I had to. I know she is safe and crucially, I know she is happy.

Not every residential placement is Winterbourne View.