Shirley with Jenson


After that first visit I made regular visits, just keeping an overview of what was going on and that’s continued. Having contact regularly we work out whether he needs to come in here, or I go out to visit and talk it through.’


Cheri said; ‘Shirley knows when I’ve had enough and I’m struggling. Then we’ll come in here for symptom management. She knows Jenson and everything about him. Recently Jenson had a seizure that was different to what he’s had before and I went into complete panic mode. I rang in here and got the reassurance I needed.’


Shirley added; ‘The relationship over two years helps with continuity. It helps with knowing how each other responds to things, so that we can work it out and can get the best resolution for Jenson. If he has any slight changes I can get a very visual picture of what’s going on so we can make suggestions. Or I can go and talk to the HDH medical team about what is the next step.’


‘I regularly meet with the complex needs team in Milton Keynes to keep updated. So we are all working as part of one multi-disciplinary team. I also liaise with the consultant neurologist in London and the clinical nurse specialist there as well. They know whose contacting them, what kind of perspective I’ve got and how well I know the family.’


Cheri told us why Jenson enjoys coming to Helen House and why it is important for her too; ‘Jenson is a very social boy. He loves listening to other children and he has a sense of humour. I know he’s happy when he’s here. He loves the spa, he enjoys his teacher sessions and he enjoys his music therapy. There are just so many things he can access.’


‘Without the support of Helen & Douglas House I wouldn’t get a break. If I’m not good that’s not going to help Jenson.’


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