Aidan lives with his mum, dad and brother in Aylesbury, Buckinghamshire. He was born in 2017 and has Spastic Diplegic Cerebral Palsy and duplication of his first chromosome. He also has drug resistant epilepsy as well as intestinal failure. His condition means that all his fluid and nutrition as well as his medications have to be delivered via an intravenous drip which in turn means around the clock care day and night. This care really takes a toll on Aidan’s parents, especially as their second son, Kylan also has severe autism and special needs. Before they were introduced to Helen & Douglas House in 2022, life was a constant juggle of medicines, sleepless nights and regular hospital admissions. It was a struggle, but one that the family came to accept as normal. As Aidan’s care needs got more complex with overnight oxygen, continuous infusion of his IV nutritional support and complex medication regime, it became clear to their social workers that the family needed help. Aidan’s condition quickly deteriorated in 2022 when he was admitted with a severe chest infection. With Aidan in a serious condition, and another young son to take care of, Zoe had very little support and was lost in the emotional toil of repeating her story to doctors and always taking on the advocacy role in her son’s care.
Introduction to Helen & Douglas House
But then the family were introduced to Helen & Douglas House; the care team, the specialist doctors at the hospice, and the team of outreach nurses. They wrapped their arms around the family and since then, their lives have been changed for the better. Despite their initial apprehension, Zoe reflects on the care the family have been given “We were gob smacked at the support that they provided… Any burden that they can take off from you…They do which is amazing. I don’t know where we’d be without that support now.” The family have regular visits from the girls in the outreach team and whether it’s a chat in their home, visits at the hospital or help with coming to terms with more changes in Aidan’s care, the support provided by the Helen & Douglas House team has proven to be a vital lifeline. Aidan’s condition changes a lot, and each new change brings with it uncertainty and anxiety as the family learns to adapt once again to another routine.
Zoe often has to ensure Aidan’s airway is safe and clear of secretions as he cannot clear these himself. This, and other aspects of Aidan’s 24/7 care involve procedures that need specialized training. Training that Zoe initially found hard to come to terms with. “It’s very isolating because not all the family are trained on Aidan’s care needs…it can feel very isolating because you’re the only one that’s dealing with that and sometimes you feel like you’re the only person that truly knows what’s going on. But when you go to Helen & Douglas House or when I speak to Belle or Rhian, they just know…they do the figuring out for you” When new training is required, Aidan’s condition changes, or the supplier for Aidan’s medication changes, the outreach nurses not only listen to Zoe’s concerns and anxieties, but help to normalise everything, source new suppliers for Aidan’s medicines, and help give her training and advice on exactly what needs to be done and when.
When it comes to Aidan’s medical team at the hospital and other healthcare professionals, the outreach nurses, whose work in Buckinghamshire is funded by the Pepper Foundation, support the family with this too, ensuring all teams are coordinated and that his medications and deliveries of medical equipment are also managed. Having the team at Helen & Douglas House has been transformative for Zoe and the family as it connected the dots between medical teams at the hospital and the hospice, clarified uncertainties, and gave her comfort knowing that they see children like Aidan all the time and they know exactly who to contact and what to do. “‘I don’t know’…as a parent those are the worst three words you can hear…but you go to Helen & Douglas House and they know who to speak to which is a massive thing for us”. May from the outreach team says “We work really well with other health professionals and can be helpful in bringing teams together. I would want families to know that they are not on their own in the community and that they can get support.”
A change of perception
They provide a lot of support, obviously to Aidan, but also provide support to me and dad and to keep a happy household, keep Aidan safe and be the best carers we can possibly be
– Zoe on the vital role Outreach provide for her and the family
For mum Zoe, perceptions of what hospice care is have changed completely since the start of their journey, and it’s this journey that Zoe chooses to focus on, rather than the unfortunate destination. From summer parties that brought both her sons together for a rare day of joint fun and adventure, to respite stays where the family could enjoy watching a film together with their favourite food cooked by the hospice catering team, Zoe knows that while this is a journey she would rather not be on with Aidan and her family, it’s making the most of the happy times and support that she’s incredibly grateful for. She says “it’s not talked about the journey that you have to go on. There’s no book for this, but when you go to Helen & Douglas House and it feels like that there is. And it feels like there’s other people going on the journey that you’re on…sometimes all you need is just to feel like you’re not doing this alone.”
More than 3 years on and with accessible time together at the hospice teamed with dedicated outreach care, support in coordinating healthcare professionals, weekly supply deliveries and support in asking the difficult questions, the family feel supported, listened to and advocated for in a way that would not have been possible without Helen & Douglas House. “Even just a mum with a child who doesn’t have complex needs, it takes a village. But when you have a child with complex medical needs, that village gets very small. With Helen & Douglas House, you have that village… it’s an absolute lifeline for us.”