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Dementia campaigner Jayne Connery explains why she is fighting for change to the care home system – and why she used a controversial reality TV show to highlight her concerns

The Big Brother house may not seem the most obvious place to raise awareness of dementia and the daily struggles millions of carers face, but campaigner Jayne Connery would have to disagree.

In fact, Jayne, who’s mum Helen has vascular dementia, is convinced her recent eight week stay in the house was worth every second of scrutiny. ‘I went in as a campaigner, extremely passionate about what I do. I made it to the final and I gained a huge amount of support from thousands of people, as well as all the housemates themselves of course. I’m very proud,’ says Jayne, 49. ‘But I missed Mum terribly. I was so worried about leaving her that I almost didn’t go. It was Dad who insisted I should, he said she’d be fine and I should live my own life.’

Jayne has spent the past seven years caring for her mum and fighting for changes to the dementia care system which she believes isn’t fit for purpose. ‘Whilst there are amazing carers and amazing care homes, managing to access them can be down to luck. Generally speaking the system is in meltdown, it’s far too complex and woefully lacking in skilled carers who can give families the help they desperately need. People are suffering.’

Jayne’s dementia journey has been a bumpy one during which her family has collected, ‘three boxfuls of apology letters,’ from numerous organisations, and learnt that the only way to get what you need is to fight. ‘It took nearly two years and several battles with doctors for Mum to be diagnosed – and we had to really stamp our feet to get her a brain scan,’ she recalls.

Jayne, her mum and dad, Patrick

Struggling through

The stress was too much for her 87-year-old father. He suffered two heart attacks and had to move out of the home he’d shared with his wife for decades while Jayne and her sister continued the fight for help. ‘But we were clueless,’ admits Jayne. ‘We knew Mum couldn’t live alone so we started looking for a care home but we didn’t know anything, we just trusted what we were told.’

Over that next five years Helen lived in three different care homes. ‘In the first home she was slapped by a carer. The second home seemed fine for about five months then I began to get a funny feeling about it. Sometimes you have to trust your intuition, so I put a hidden camera in Mum’s room and found severe failings of care. But the third home was by far the worst. I reported it to the Care Quality Commission who inspected it and decided it was inadequate. It’s now in special measures. After that, I couldn’t contemplate putting Mum in another care home.’

Instead, Helen, now 80, returned home and now lives with Jayne and a full-time carer. Seven months later she’s a different person. ‘Mum is absolutely amazing, she’s changed so much since she came home, her memory has improved and she sleeps through the night,’ says Jayne. ‘Dad comes to see her every day, they’re still devoted to each other, and her carer Irene is part of the family, she knows her inside out and gives her one-to-one care.

‘I know this arrangement won’t work for everyone, especially if you work or have children, but I’m convinced that all care homes should be able to provide similar high quality care. I’m not blaming the carers – some of them are amazing, many of them contact me and say how frustrated they are that they aren’t able to do their jobs properly. We need the Government to sit up and listen and pour more money into training and providing more NHS funded care homes. And I firmly believe all care homes should have CCTV cameras in communal areas. You have them in hotels and private hospitals so why not in homes with vulnerable residents? Cameras would protect the carers, too, of course.’

So what is it like to finally be away from the cameras herself, after 54 days of public scrutiny? ‘I was so desperate to see Mum that I only stayed an hour at the wrap party and got a cab straight home,’ admits Jayne. ‘She was in bed fast asleep when I got home so I lay down next to her and gave her a cuddle. She woke up, smiled and said ‘will you take me for a fag?’ That was it!’