Alexander Devine hospice founder reflects on past 15 years

“It is because of him that we are on this journey and we have this amazing service.”

Fiona Devine wants to change the public perception of children’s hospices.

Sixteen years after losing her son Alexander to a rare brain tumour, Fiona sits proudly inside a hospice building she created to give families the support they require when facing the same grief she did.

This year marks the 15th anniversary of the Alexander Devine Children’s Hospice Service.

It was established on April 25, 2007, just one year after Alexander passed away.

“It has been a real honour and privilege to be on this journey,” Fiona said.

“I am on it because of Alexander – he was my very best friend, there is not a day that goes by that I don’t miss him.

“Personally, I have made some incredible friendships and met the most remarkable people.

“At the beginning I was a recently bereaved mum who had this vision and it was a huge leap of faith to make people believe in that.

“There are some people who did believe in that from the start and I am grateful to them for their support, and there were some who felt extremely sorry for me but never thought I would be able to do it because it was such a big ask.”

Since Fiona and her husband John made it their mission to provide a Berkshire children’s hospice, the charity has come on leaps and bounds.

Two years after the charity was founded, the hospice was able to fund its first nurse in 2009, while in 2012 it was officially registered with the Care Quality Commission (CQC).

Then, in June 2018, Alexander Devine opened the doors of its new hospice in Snowball Hill after the first spades were planted in the ground in 2015.

As the charity marks its 15th year, a series of events have been taking place at the building to mark the occasion, including a birthday party last weekend.

Fiona also wants to use the milestone to bust some myths about children’s hospices, with many people associating them solely with sadness.

“Children’s hospices evoke in people’s minds a place of sadness and tragedy – that can’t be further from the truth,” she said.

“It is a joyous place to be – a place full of love.

“Of course, at the end of any child’s journey it is devastating for that family and it changes their life forever.

“But we are in this unique position where we get to know that child from the point of diagnosis and can follow them on their journey for many years.

“You see families at their rawest times and you kind of become part of that family in some way.

“We are there to provide not just that end-of-life care but to be with that child and family to create those special memories.”

Fiona added that children’s hospices are not measured on their success or bed occupancy rates, which was another myth she wanted to put straight.

Going forward, she told the Advertiser that Alexander Devine wanted to support more families in need and recruit more nurses.

“Workforce issues are up and down the country, it is not unique to us,” she said. “We would love to recruit another four to five nurses and then we can extend our service even further. “We can give them lots of training and support, and the opportunity to develop these relationships with families.”

Fiona added that the charity needed extra Government intervention to drive an increase in nurses, calling on them to reinstate the nursing bursaries and encourage more people into the profession.

“We are doing everything we possibly can but we need help,” she said. “We just need to get nurses and carers in so we can start that pipelining if you like.”

An increase in children with more complex needs is also adding to the cost, Fiona added.

Despite this, Fiona said the charity has done ‘remarkably well’ as she remains keen to develop the service further.

“I want to say a huge thank you to the whole community. And a huge thank you to Alexander for being the inspiration.”

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