Daisy has been receiving support from Havens Hospices for eight years. The 17 year old has two rare conditions that cause many other complications and needs to receive her nutrition and medication into her veins, through a system called TPN (total parenteral nutrition).
She has a Hickman line, a tube that goes directly into her heart. This level of medical intervention brings with it many risks such as infections and serious bleeding.
When Daisy is connected to these machines for up to 24 hours a day, mum Tracy must be present as the process is completely unique to Daisy and nurses need an intensive level of experience and specific training on Daisy’s system to be able to do this.
This means that, at present, Daisy isn’t benefiting from the overnight respite that the charity could offer. Staff are currently being trained to undertake this complex clinical procedure, but the charity needs more qualified nurses to ensure there is always someone on shift with these skills.
Tracy gave up work as a Teaching Assistant in 2008 to be Daisy’s full time carer. “The theme of Children’s Hospice Week this year is ‘Pushed to the limits’ which is something parents like me can completely identify with. In 17 years, I haven’t had a break. There isn’t anywhere or anyone at the moment who can provide the level of care that Daisy needs, only certain hospitals who intervene when there’s an emergency.”
Tracy continues, “But as the world returns to normal, nothing really changes for us unless somewhere like Little Havens has the right qualified nurses who can undergo training for these type of rare and complex conditions so there is a consistent level of care for young people like Daisy.
Daisy had respite in the home once a month from Havens Hospices and Tracy stayed in the house in case she’s needed for the medical procedures. During Covid, this care shifted online because Daisy has been shielding.
Daisy says, “We are so grateful for the care that Havens Hospices can provide and during Covid we’ve actually benefited from their adaptations in services with more online therapies and activities. We’ve had a lot of contact from the team during lockdown. I have a great relationship with my Havens Hospices carer Amanda. We spend our time together chatting, doing art and playing games. She can also signpost me and Mum if we are struggling with something.”
The family is supported by the Havens Hospices Wellbeing Team, too. Its Creative Therapist supports Daisy through art workshops. Tracy has also benefited from complementary therapy offered by the charity.
Tracy continues, “During Covid, the Care Team arranged for one of the Senior Nurses to sit with Daisy whilst I attended my mother-in-law’s funeral. Whilst she had the relevant training if there was an emergency, I still needed to be back in time to change over Daisy’s machines. That demonstrates that the charity is doing everything to help in any way they can as Daisy’s needs are changing.”
A recruitment campaign is underway to encourage more qualified children’s palliative care nurses to the hospice. The shortage of these staff is a wider issue that affects all healthcare providers, and was highlighted by national charity Together for Short Lives in a 2019 report.
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Published in 2021
I have a great relationship with my Havens Hospices carer Amanda. We spend our time together chatting, doing art and playing games. She can also signpost me and Mum if we are struggling with something.