Pippa, from Maidenhead, was born in 2013. She was born with Down’s syndrome and, as she got older, developed other conditions that cause seizures and further complications. Eventually, Pippa needed our care and support and she started coming to Helen & Douglas House when she was five years old.
Pippa’s family were first told about Helen & Douglas House when she was quite young. But, they didn’t come for a few years as they were nervous about the thought of going to a hospice, and weren’t sure what help they could get. Now, her mum Danielle says that she wishes they had come sooner.
They first visited the hospice after Pippa had spent time in hospital. This was at the point they started to get further diagnoses of her developing conditions. They spoke to friends, who had used the hospice, and realised it was a place they could get help to manage the complications of her conditions. With our care, they wouldn’t have to cope with the unknown and would always have someone to turn to on difficult days. They would also have a place to make memories together.
‘It’s the little things – if something happens to me, or if I get ill, there are people at the hospice who can help us. This is a huge reassurance. If we need someone during the night, I know there are there to help us.’ Danielle, Pippa’s Mum
Subsequently, Pippa has been diagnosed with Lennox Gastaut Syndrome and Chronic Lung Disease, amongst other diagnoses. These can cause increasing complications, so hospice care has become vital for her and her family. As she gets older her seizures have become worse which has meant she has needed more intervention than usual. Sometimes, this has resulted in hospital admissions. Danielle says that the hospice helps to support her when she is unsure what to do and help care for Pippa as a step-down visit from hospital, for symptom management, or help her family make medical decisions. They also provide supportive stays so the family can have a rest from caring.
Visiting the hospice
When Pippa comes for a supportive stay at Helen & Douglas House she stays in one of our specially designed bedrooms, whilst her family sleep in our on-site flats. Sometimes, Pippa’s older brother Elliot also comes too. ‘At home Elliot plays a big role as a young carer for Pippa. So, when we come to the hospice he can relax and be an older brother, and a child himself. When we visit, we know we are somewhere safe and that it is enjoyable for Pippa too. My husband and I love that we can all spend time together without having to leave Pippa completely. And we also get the chance to do things together that may be inaccessible for her.’
During her visits to the hospice, Pippa enjoys activities like messy play and spending time in our sensory room. She also loves getting the chance to meet visiting therapy animals, such as PAT cat Leo (featured further down).
‘Pippa loves to use the sensory room and the therapeutic pool and enjoys the music and singing activities. All these open the world for Pippa to get involved in. She cannot request activities as she is non-verbal, but you can see from her body language and behaviours that she enjoys being busy. Without people to help her access these activities, Pippa would be very bored.’
Care during lockdown
During lockdown, Pippa and her family were advised to shield. This resulted in quite an insular life for her and her family during the pandemic. They coped at home as well as they could, making things interesting for her, getting outside in the garden and doing lots of sensory play. We also checked in and offered advice and support over the phone for her family and sent care packages.
As lockdown eased, Pippa and her family were able to come back to Helen & Douglas House for supportive stays. Her mum tells us that it was a huge relief for them, and so good for Pippa to have somewhere different and safe to go. For her mum Danielle, she was able to stay in the family flat again, knowing she could be close to Pippa but would also be able to have a rest from caring. Danielle said, ‘I find the supportive stays such a huge support, and actually look forward to it when we have an upcoming stay.’
Help make difference to families when it matters the most
Did you know… A donation of £30 could help fund a play session in-house for a child just like Pippa. Giving her a one-to-one carer and specialist materials to help with her child development, socialisation and confidence. As well as give her the chance to make special memories.