Since their father sadly passed away last year, we have been supporting Adam and his two brothers so they can live in their own home. All three brothers have a condition called myotonic dystrophy, which causes progressive muscle wasting and weakness. It can be very painful and make it difficult to walk, so we supported them to move into a bungalow when they were all struggling with the stairs in their family home. They currently receive ten hours of support a day, to enable them to maintain their home and to keep as independent and mobile as possible. This support also allows them to get out and about, both for social purposes and to appointments.
However, Adam has found leaving the house very challenging and the thought of attending hospital appointments even more so. Although going out does present physical challenges, the thing that frightened Adam most about the idea of going to a hospital was the thought of not coming home again. Gemma, deputy manager of our Nottinghamshire Support at Home team, explains: “Sadly, their dad suffered with the same condition and was bedbound with it for many years, before going into hospital and then to residential care – so in Adam’s mind, his dad went in to hospital and never came home again. Adam and his brothers have been supported by FitzRoy since their dad passed away and have been doing really well, but Adam was still unable to face attending his hospital appointments. We’ve been working on building his confidence up around this specifically as well as establishing strong, trusting relationships with his support workers.
“Adam had another appointment at the hospital last Friday, so we’ve been doing our utmost to build his confidence up ahead of it. We’ve been reassuring him and explaining to him how important the appointment was as it should help improve his quality of life, as he can suffer a lot of pain with his condition. Adam asked for Michelle, one of his regular support workers, to be with him on the day and I called him daily last week to check in and reassure him that we’d be there with him every step of the way. We also arranged for one of his brothers to come along, as Adam wanted him there too.”
Since Adam has been struggling to leave the house, attending the hospital appointment involved navigating a lot of new experiences as well as facing his biggest fear. However, things went even better than could have been hoped. Gemma said:
Not only did Adam successfully attend his appointment, he was also quite a hit with the ladies in the waiting room with his cheeky side! He FaceTimed the staff who weren’t with him during his trip afterwards and it was just brilliant to see him beaming from ear to ear and so pleased with himself. I couldn’t be prouder of him and what he’s achieved, I really couldn’t. I emailed his social worker to let her know and she’s on Cloud 9 too! This is such a huge achievement for Adam and will make it much easier for him to attend future hospital appointments.