Jack's mum tells how Pulse Community Healthcare supports his care.
When he was 14, out of the blue, our son Jack suffered a massive brain haemorrhage. He required surgery to relieve the pressure and subsequently underwent a craniotomy. Although he survived, we were told that Jack had suffered severe brain damage and would most likely be paralysed and on a ventilator for the rest of his, potentially, short life.
Refusing to believe Jack was a hopeless case, we spent every moment we could with him. Eventually, his eyes opened but he couldn’t focus and he regained very slight movement in one finger. After two long months, Jack’s neuro team advised us that he’d suffered excessive damage to each side of his brain as well as severe damage to his brain stem, respiratory system and pituitary gland. We were advised to prepare for the worst.
The months went by and Jack continued to improve, albeit slowly. He had a tracheostomy, a feeding button and a titanium plate fitted in his head. Gradually he began to recognise people and developed small controlled hand movements. However he also suffered a long list of complications, which included regular spasms and contractures in his left hand and foot together with scoliosis of the spine.
Four years later, when Jack turned 18, Manchester CCG transferred his care package to Pulse Community Healthcare, one of their preferred suppliers. Despite assurances that they were the ideal people to care for Jack, and had a solid reputation for providing complex care packages, we were very nervous. By this time, Jack was being cared for at home and had a specific list of requirements; he still needed 24-hour care and couldn’t be left safely alone. He was unable to move himself, regulate his own temperature, suffered regular spasms and was on a complicated medication schedule and strict daily routine. We had no idea who Pulse Community Healthcare were and didn’t quite understand why Jack couldn’t continue to be cared for by Manchester CCGs children’s team. We were worried he could become distressed with people he didn’t know.
Understanding our concerns, Jack’s dedicated Case Manager spent a lot of time reassuring us and kept us fully informed on all aspects of the transition of care. We were involved in the recruitment of Jack’s care team which was brilliant as we know he loves young, fun people to engage with and were able to ensure that’s what he got.
Although Jack was entitled to 24-hour care, we wanted some time with him alone and requested our PCH support be reduced by four hours every evening. However, there are times when we do need to revert back to 24-hour support and I know I can rely on the team to fight for these extra hours. When there’s a need for extra staff, I’m confident our Case Manager, Alison, knows exactly who Jack will respond to and this is something I find extremely comforting.
I’ve never felt more reassured about Jack’s wellbeing than I am now, partly because I know that any concerns I have, however small, will be taken seriously. I’m thrilled with Jack’s support team, so much so that I have asked them to fully support him when he attends a respite centre for six weeks a year – a break that his dad and I desperately need. Knowing that Jack will be happy during this time makes everything so much easier.
On my request, a member of Jack’s Pulse Community Healthcare team attends all of his hospital reviews with us. It’s not something that the hospital requires but I feel strongly that they are his advocates. Earlier this year, Jack’s dad and I spent a fortnight in Cornwall by ourselves - something that I wouldn’t have thought possible a year ago. I‘ve gone back to work part-time and Jack, as well as enjoying trampolining and swimming, now attends college. He’s even gone to a Lady Gaga concert. Much of this is due to the care provided by Pulse Community Healthcare. The impact they’ve had on our family has made such an amazing difference.