My brother can’t talk yet, but he is so cheerful. I hear him laughing whether he’s in his room learning and playing games, walking around the house or outside, or during mealtimes. Rohan is often laughing at something he’ll never tell us, sometimes it’s at the same jokes that our dad and I make over and over again, and he’ll always laugh at me when I’m having a meltdown over a missing book.
Rohan’s laugh is infectious, and it’s down to his carers that he’s in such a good mood all the time. I couldn’t count the number of carers who have looked after my brother, and as we grew up it only became rarer to have just the four of us in the house. It’s something I’ve struggled with a lot over the years – having so many people in our home – and yet, being cared for twenty-four hours a day, seven days a week is something I can only imagine, where Rohan has been in this position his whole life.
It’s an unfortunate reality that Rohan needs such a high level of care to be alive, but it’s down to the quality of the people on the team that he’s not just alive, but able to walk, run, play games, learn, and laugh. In an ideal world, Rohan being well looked-after means that my parents can work and I can be at university, that my parents can go out and know that Rohan is safe.
As evidenced by our campaign, this is not an ideal world.
Rohan’s current care team is amazing, however in the last three years since he turned eighteen, our entire family, especially my mum, have barely had a break. The first attempt to remove Rohan from our home was not long after his nineteenth birthday. At the same time, the number of tonic-clonic seizures he was having skyrocketed. I was terrified for him, and I remember my realisation that nobody had really told him any detail about what was going on – how must he have been feeling? No wonder he was having such an awful reaction to whatever he’d overheard.
Soon after this we were forced by the Local Authority to move to agency care, after years of hiring our own team to look after Rohan. When we had hired new people in the past, their training to take care of Rohan would be done partly by my mum, but also by the rest of the team. With an entirely new team of people, it fell to my mum to both train these new carers to be able to look after my brother correctly, while also taking on most of the caring duties herself until they were able to do this.
Since then, we have had incessant pressure from the LA and the ICB, we have had the care team change again, and now, when we are in a good position, they are decreasing the number of hours for Rohan’s care package and are transferring us to a care company who are entirely unsuitable. The new company have ten days of overlap with the current team of carers, which is barely a fraction of the time needed to train one person to take care of Rohan properly, let alone a whole team of people. We are being forced into a worse situation than when we were first moved to agency care – again, with the bulk of the training and care responsibilities on my mum’s shoulders. Our belief is that the LA and ICB will use either the failure of the company to take care of Rohan, or my mum’s involvement in his care (for the purposes of keeping my brother alive!) to be ‘interfering’, make up completely false safeguarding allegations, and use these as a basis to go to the Court of Protection in another attempt to remove Rohan from our home.
In the past, I’ve seen Rohan in the hospital and helped him through the long period of recovery. This was when we were in charge of his care. If Rohan is removed from his home and the level of care he receives here, we frankly have no idea how long he might live, and likely with an incredibly poor quality of life.
Rohan’s laugh fills the heart of anyone who hears it with joy, and for this he needs to remain in his home with the appropriate care. Please donate, and share our campaign where possible to help us keep Rohan safe, and support other families in similar situations.
