A psychologist who is bed bound for most of her day due to several debilitating conditions is championing the importance of good quality care.
Lolli Mankazana, 48, is speaking out in a bid to help others after suffering years of home help that she says was below par.
Thankfully, after switching care providers, Lolli, who needs someone to help her get dressed, make her breakfast, lunch and dinner and take her out just once a fortnight, is now very happy with the team that visit her.
She is reliant on carers because she suffers from severe and complex ME, chronic kidney disease, which means one day she will require dialysis, and cardiomyopathy, which has caused her heart to fail on several occasions.
Just last year Lolli, who lives in Marston Moretaine, was left feeling unsafe in her own home after items went missing and carers became increasingly dismissive and rude towards her.
“To feel unsafe in your own home is soul destroying,” said Lolli, who was also dealing with the devastating news that both of her parents had been diagnosed with incurable cancers. “The behaviour was getting worse at a time when they knew I was most vulnerable and it made it unbearable and I’m not a weak person,” said Lolli. “I would be scared to ring the office. They were always rude to me on the phone and were dismissive of me.”
She said carers would be ‘extremely late’ when collecting her for appointments and she would be told that there was no-one available to do house cleaning, required because Lolli has a dust allergy.
Ill health forced her to abandon her work towards a doctorate and before settling in the UK she was a psychologist in South Africa.
Her complex conditions mean she is bed bound for 95 to 99 per cent of her time. “Most of the time I’m in bed,” said Lolli. “Some days I can go down stairs because I have a stair lift and an indoor wheelchair.”
After enduring months of upset due to the way she was being treated by carers, Lolli seeked the help of POhWER - a charity that provides advocacy services to people who experience disability, vulnerability, distress and social exclusion.
She said: “The main message is that I want people who are vulnerable adults to realise that when their care is bad or when they feel they are being treated badly or unfairly by a care company, most care companies will have a complaints service and furthermore one can complain to social services and one can take it further to the local authority.
“I learnt this the hard way. It took me ages and a lot of tears. I was extremely stressed and extremely distressed.”