Giving Chris his life back with muscular dystrophy care at home
Chris is a 43-year-old man and has been living with muscular dystrophy for many years.
Recently his lung collapsed and following tracheostomy he required 24-hour care. Previously his mother and PA were able to care for him, but now that complex nurse-led care was needed around the clock it was impossible for them to provide the level of support he required.
Chris was determined to return home from hospital and live as independently as possible. His critical medical condition gave him bouts of anxiety that impacted how he felt, so he needed to trust his care team. He worried about the loss of personal space from 24-hour care arrangement, so it was key that Chris and his carers got on well so they could be honest with each other about the level of care he wanted.
Prestige responded quickly with a team of carers to support Chris that would best meet his needs. So that Chris could feel reassured and had continuity we happily employed Chris’ live-in PA of 8 years James, as part of the team. James was medically trained at the hospital with additional training from Prestige. We provide another carer to deliver care in the morning and evenings, as well as a carer through the night to attend to his medical and personal needs. When James takes a break, we also provide live-in care for the periods that James is away. This approach enabled Chris to have control over his care team which was very important to him.
The complex care provided by the team at Prestige to support his muscular dystrophy symptoms included tracheostomy care, BPAP, suctioning, cough assist, ventilator and nebuliser support, handling and hoisting, as well as personal care and domestic care of his home.
Chris said: “The Prestige team are very good at judging characters – always putting the right people in for me – I really trust them. They give me much-need emotional as well as practical support. My views are completely respected. I feel understood, my carers are more like friends – the trust and family feel mean absolutely everything to me. Prestige has given me back my independence. That’s priceless. I didn’t think what I have was possible.”
Chris now lives a fulfilled life at home with his dedicated team of carers and his mother is able to enjoy her life again, free from worry knowing that he is in safe hands. The outcome for Chris is positive. He leads an active social life and takes pride in his charity work as a befriender and tutor, supporting people with long-term health conditions.
Claire, Chris’ mum said: “This is my first experience of care. I cannot fault it. I don’t have to worry now. The carers are all so well trained and they’ve always got time.”
The team at Prestige work in partnership with the local Clinical Commissioning Group that recommended Chris, who review his care plans. Chris chooses to have the district nurse change his tracheostomy once a month, as he likes the medical contact. He also has regular contact with the respiratory outreach nurse. James says “they rely on us because we are with Chris every day. We’re all part of the same team, it’s like a jigsaw puzzle, it all just slots together”.