21 May 2018

Children’s Hospice Week – Life’s Short

Rennie Grove Hospice Care is joining with other hospice care providers in the UK to raise the profile of children’s palliative care during Children’s Hospice Week from 21 to 27 May 2018.

riley soft play

Rennie Grove provides a specialist 24/7 Children’s Hospice at Home Service for babies, children and young people up to the age of 19 living with a life-limiting condition in parts of Bucks and Herts.  Its team of specialist children’s nurses provide flexible and responsive care tailored to each family’s needs to help ensure that the children are able to fulfil their potential and enjoy the best quality of life possible. And when the time comes, it ensures that every child and family has the choice to receive specialist end of life care at home.

It is currently caring for 41 babies, children and young people.

Visit www.renniegrove.org/ourchildren to read about children like Riley and Stanley. They smile and giggle and win hearts just like any other 5 and 4 year old but sadly neither Riley nor Stanley is able to sit, walk, talk or even feed properly.  Both boys have been diagnosed with a very rare genetic condition involving a duplication of an X chromosome which has left them with very poor muscle tone and requiring constant care. Riley and Stanley are being cared for by Rennie Grove’s children’s nurses who also provide support to the boys’ parents, Shailza and Daniel.

Shailza said, “Knowing that there is help at hand 24 hours a day is immensely reassuring.  I have also called them [Rennie Grove] at night for advice when the boys become ill and I was unsure about whether or not to call an ambulance.  They will always offer advice and come out if needed and if the boys are in hospital they will come and visit.”

Rennie Grove works closely with other care providers to create a cohesive team around the child and family, but most importantly, it empowers families to care for their child and live a life as close to normality as possible.

It also offers a range of counselling and support services to family members to help them to cope with illness and bereavement. Its Children’s and Family Support Therapist works with the siblings of child patients and the children of adult patients in the home or at school, to ensure they receive the support they need.

Find out more about Rennie Grove’s children’s nursing service from one of the team at: www.renniegrove.org/terry and hear how it supports children through bereavement at www.renniegrove.org/karen 

Together for Short Lives is the umbrella body for children’s hospice care in the UK and this year is reminding people that “Life’s short” for all of us so make the most of every minute.

Join the conversation on social media using #LifesShort and #ChildrensHospiceWeek and follow Rennie Grove on Twitter @renniegrove or like them on Facebook @renniegrovehospicecare to get involved.