Diary: first rule of caring is to care
Suzanne Gale is beyond frustrated about another unnecessary death, councils controlling people’s lives and supported living that is neither supported nor provides a good life
My mind keeps returning to the outcome of the inquest into the death of Giuseppe ‘Joe’ Ulleri at the Manchester Royal Infirmary. I just cannot fathom how he was subjected to neglect on this level.
He was surrounded by family who were clearly advocating for him and still staff failed to meet his basic needs. This wasn’t the result of cuts to funding and it wasn’t because of a split-second decision made by an overworked junior doctor. It was due to an institutional failure by the hospital to find out if he was as comfortable as he could be and whether he was hungry. Week one of medical training, I’d have thought?
This, unfortunately, is an extreme but common example of how support for people with additional support needs continues to be painfully substandard. I, like most people, am furious about the funding cuts across the sector but this isn’t about that. It’s about not caring.
Overall control of the council
Recently, I’ve been working on a project where I did a whistle-stop tour around some supported living services to assess whether they were fit for purpose. In short, they weren’t. I saw a huge lack of understanding and awareness of the Care Act and its intention within the very institutions that have been given the responsibility to give people the intended equitable quality of life. Just basic rights are not being supported.
I met one young man who had been assessed by the local authority as not having capacity to manage his money, who told me he was no longer allowed to have his bank statements posted to him in case anyone else in his home, including his chosen support staff, sees them. They now go straight to the council team that manage his money. He’s sad about this as he used to like opening his post and keeping the statements in a folder. I met him for only 10 minutes and this was one of the things he wanted to tell me about. It meant a lot to him and his basic, perfectly reasonable wishes were being completely ignored. If a family member were acting in this way, we’d challenge and raise formal concerns, but it appears that random council staff – there was no named person, just a team – can make this decision without question.
Back to the 1950s
In some authorities, there appear to be entire systems in place to keep adult residents as powerless as possible.
<< One service was deemed ‘outstanding’ yet personal records were kept in an unlocked cabinet in a communal area >>
Many of the residents I met recently get an allowance that has not changed for years and everyone gets the same. It is not related to how much they want to spend or save. The council also decides how much is allowed for ‘housekeeping’ as though the home is run by a 1950s housewife. This sum is not just for a general kitty for toilet roll and washing-up liquid as you’d find in other shared houses but for all the food in the house, including tea, coffee and snacks for staff.
Councils often give a set amount of ‘housekeeping’ money to residents, as if their shared homes were run by a 1950s housewife
What if I don’t want to fund my housemate’s cheese addiction or my support worker’s 10 cups of tea a day habit? What if I want to spend my money on ready-made M&S vegan meals instead of having a weekly house barbecue every week or paying for Sky? There’s just no scope for person-centred choice.
Supported? Living?
To add to the idiocy, I continue to pull my hair out at the lack of understanding by Care Quality Commission about what supported living really means.
One service that I visited had been deemed ‘outstanding’ yet peopleÕs records, including files with all of their personal information, were kept in an unlocked cabinet in a communal area and support staff were cooking all of the meals and doing the cleaning for a perfectly mobile and capable group of residents. I guess the CQC assessor had been distracted by the well-manicured garden and the pictures on the wall of people having a nice day out several years ago (not the current residents, obviously).
I am beyond frustrated not just because this poor provision exists but also because no one was shocked by what I found. Or, seemingly, inclined to change anything.
Pain is part of a normal life
Well done again BBC’s Call The Midwife. Reggie (Daniel Laurie), who has Down’s syndrome, has held some strong storylines over the years and, while living in a supported community, still comes home regularly to visit his family. In the last series, Reggie announced that he has a girlfriend. His family worried about him getting his heart broken but his uncle said: ‘No one can go through life without experiencing any pain at all.’ Hear, hear. Let Reggie try and maybe fail like the rest of us.
Suzanne Gale is a consultant who works on projects to improve housing, employment and lifestyle options for marginalised people
