Meet #TeamDevine: Jules and Tamara, Alexander’s Clinical Nurse Specialists

It is difficult to describe just how valuable our Clinical Nurse Specialists are to the families that we support, even more so during this pandemic. But this quote from one of our Mums, ShamBhavi, truly echoes what many Alexander Devine families feel about the lifeline they offer:

“I don’t know what we would have done without having Alexander Devine’s Clinical Nurse Specialists to help us. These angels helped to take so much of our stress away. Not only advising how to take care of Aayushi but working with Consultants, GP, Physios and pharmacies. So many things I was struggling with, but they helped in so many ways to resolve things. I am so grateful from the bottom of my heart and can’t thank them enough. They care with their heart and soul and make the ‘Devine’ difference in people’s lives.”

This week in #MeetTheTeam, our CNS, Jules and Tamara, share their insights into the vital role they have been playing in helping to keep seriously-ill children out of hospital and safe from infection. They work with families and NHS teams to create the best support around these vulnerable children as possible. This also helps minimise impact on hospitals and valuable resources needed in the fight against Covid-19:

“Caring for a child with complex healthcare needs is hard enough, but when the pandemic hit and the UK went into lockdown, life for many of our families became immeasurably harder. As well as an exhausting routine of caring for their child 24/7, their usual support networks, routines and ways of accessing what they need stopped almost overnight.

We know that families are exhausted, anxious and isolated. And over the last few months we have been trying to support them in any way we can and take the weight off the family. The children that we support are some of the most vulnerable in our society and protecting them is critical. For some it is being at the end of the phone or emergency visits when their child’s condition changes or worsens, regularly reviewing and rewriting symptom management plans to help them cope. For others it has been liaising with other multi-disciplinary teams such as doctors, consultants and physios to resolve issues or put in place measures to best support their child.

An important element of what we do is also equipping parents or carers with the ability to take control, empowering them with how to cope with changes in their child’s condition. This has played an important part in keeping some of these seriously-ill children safe at home without having to add pressure to an already very stretched NHS.

During lockdown, we have also continued to make sure we are there for families to advise and support at the end of life. In these hardest and saddest of times, we try to facilitate what families want and also ensure children are pain and symptom free to enable a peaceful death. We work alongside other professionals to ensure there is a comprehensive and coordinated approach, keeping the child and family at the heart of all decisions.”

Need our help?

The word hospice should not seem scary and getting support from us doesn’t have to mean a child’s death is imminent. Helping to enrich the lives of the children and their families is at the heart of our service, our end of life and bereavement support is just a part of what we do.

Our children’s hospice service covers the whole of Berkshire and into surrounding counties. If you think your child may be eligible for our services, please do get in touch.

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Last week we had the pleasure of welcoming the Mayor of the Royal Borough of Windsor & Maidenhead, Cllr Christine Bateson, to our children’s hospice in Maidenhead.

It was a wonderful opportunity to show her our amazing state-of-the-art facilities and talk about the vital support we give to local children and their families, all made possible by donations and fundraising.

There are many misconceptions about what children’s hospice care is all about. Not many people understand the all-encompassing care that children’s hospice services like ours provide to children with life-limiting and life-threatening conditions, and their families. As well as the specialist clinical care, our holistic and bespoke approach aims to provide the best possible support for each child and family. This includes support such as much-needed respite, specialist play for children and their siblings, symptom management, family support services, end of life care and bereavement support. As well as at our children’s hospice in Maidenhead, Alexander’s Care Team provides support in the family home and the community, including hospitals and schools.

With facilities at our hospice such as a hydrotherapy pool, sensory room and accessible playground, we offer opportunities for children and their siblings to experience fun, joy and adventures, and help families make precious memories for as long as they have. For some of these children and their families, we will support them for many years, for others it may be a shorter period of time.

During the visit, our CEO Fiona introduced the mayor to our some of our wonderful volunteers and members of Alexander’s Care Team. However, we think it was Thomas and Keanu’s big smiles that definitely proved to be the highlight of the visit!

#royalboroughofwindsorandmaidenhead #childrenshospicecare #specialistcare #localcharity #lifeatourhospice
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We were very grateful to receive a donation of amazing mental health awareness self-care packages from Charlotte, founder of a lovely local small business called MindFill. They work with a range of clients to curate beautiful and bespoke branded care packages to help with employee wellness.

Thank you for thinking of us, what a lovely treat!
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Alexander Devine Children’s Hospice Service is the operating name of Alexander Devine Children’s Cancer Trust. A company limited by guarantee registered in England and Wales No. 5757493

Copyright © 2019 Alexander Devine Children's Hospice Service. UK Registered Charity No. 1118947.