Pushing to get the right healthcare for Jonathan

Mel Simpson, Service Manager at Timber Grove, FitzRoy’s registered care home in Essex, tells us about the importance of advocacy to get the people we support the right healthcare.

“Two years ago Jonathan went into hospital after having a seizure. He lost a lot of mobility and was on a pureed diet. After a long rehab process he slowly started to build up his mobility, but he still needed to eat pureed foods and he lost a lot of weight.

We worked with the speech and language team and other health professionals to get him onto more solid food, but he would get chest infections. There was no obvious reason for this so we pushed for it to be investigated. He had a video fluoroscopy (like an x-ray video) which showed an osteophyte – a growth on the bone – in his neck, which was affecting his ability to swallow. Removing the growth was a big operation and the ENT team were reluctant to operate.

We persevered and Jonathan was seen again by the orthopaedic team who had experience of working with patients with a learning disability. They agreed to operate. We represented Jonathan in his best interest meeting and with relevant professionals as they discussed his case and agreed a treatment plan. I had never heard of osteophytes before his diagnosis, so I had to do my research! I needed to understand exactly what was going on and what the options were so I could properly advocate for Jonathan. There wasn’t always agreement, but we’d built up a rapport with the health professionals, so they trusted us.

“Jonathan had the growth removed in late 2018 and was eating jam and toast within the first week. It’s so rewarding and shows how important it is to push to get the right outcome. We recently celebrated Jonathan’s birthday, and he really loves his food (as do most of us I guess!) so it was great to see him being able to eat his birthday cake.”