Community activities are critical to Robert*, he can't be without them

*Names and images have been changed to protect those involved 

Since his mother died in 1989 Robert*, aged 67, has lived independently while his siblings, Sarah* and Peter*, support him with everything. Spending a couple of days a week at a day centre and a local farm are the only social care support Robert receives and these community activities are critical to Robert – they’re the things he’s driven by and he can’t be without them.

Until recently this was covered by his allocated social care budget of £170 a week but now Robert is being asked to contribute £120 a week – over £500 a month - to be able to continue the activities that are so important to him. The charges were introduced and the family started to receive bills in 2020 but they’ve continued to dispute paying for them. Robert’s brother, Peter, says:

“My brother is in his late 60s and has never been in managed care – the money he receives for activities has been used so he can keep enjoying the independent living he’s been used to since he was a child and do things in the community. Robert relies on our sister for all of his personal care – cooking, doing his food shopping, washing his clothes, managing his bills and everything else – and Sarah does a two hour roundtrip three times a week to be able to support him. She’s 75 now and isn’t able to do lots of the things that Robert needs help with – and at the same time support is being taken away. For so long our family has done everything but now they’re taking away the only support Robert gets and ruining his quality of life. It’s incredibly unjust.

they’re taking away the only support Robert gets and ruining his quality of life. It’s incredibly unjust.

“In the first lockdown when his services were closed, Robert stayed with me and he couldn’t understand why he wasn’t going to the day centre and doing the things he’s always done – he couldn’t cope without his activities. It was extremely difficult – he gets frustrated when he can’t cope or understand what you’re trying to tell them. He’s a very calm person normally but in these times he could get emotional and during lockdown he often became very distressed.”

“Thankfully he was able to go back after the first lockdown but now we have the worry about paying for it. Our choice is to keep our brother in his house but he’s already in the house so much and we really can’t afford to pay for it ourselves. On top of this everything’s gone up – Robert has had to pay more for gas, electricity, water and the cost of food is shocking. This has come at a really bad time.”