From toddlers to teenagers – how our care adapts to changing needs | Julia's House

February 3rd, 2026

By Natalie Sheehy, Julia’s House Lead Nurse Dorset Hospice

I first started working at Julia’s House as a carer while waiting to re-register as a nurse in 2010. I can’t believe that was 16 years ago! I was returning to nursing practice after a short period away having my children and have since worked through several of the nursing roles until my current one as Lead Nurse for the Dorset hospice.

I’ve watched many of the children I first cared for - toddlers and pre-schoolers - grow up with us as an organisation and many of them have now transferred to adult care. It’s been wonderful to be there with them through the years. And in that time of course we’ve had to adapt our care to meet their changing needs as young people. As well as supporting them, I’ve learnt so much from them in terms of the type of care they want and how we can best adapt to meet their needs.

We’ve also had to adapt to the changing clinical needs of the children as they have grown – types and routes of medication, different equipment, guidance on how their condition should be managed. All of these aspects change with age. We’re also now looking after children and young people with increasingly complex conditions as there have been huge advances in medical care and equipment over the years which means children and young people with complex conditions can be managed at home and are living longer. Quite a few of the children we support require ventilatory support at home and/or during visits to hospice, some are reliant on their ventilation support via a tracheostomy. They also have other devices and complex regimes which support their care: cough assist machines, suction machines and oxygen, the use of a gastrostomy (a feeding tube that goes directly into the stomach), complex medicine regimes for epilepsy and dystonia and symptom management.

To enable us to do this we offer bespoke training to ensure we’re keeping pace with all the changes and developments, from understanding new treatments to learning how to use the latest medical equipment such as ventilators which are changing and improving all the time.

We are always listening to the children and young people and their families to help us understand their needs. And not just listening but hearing what they are saying. We work with them to modify our care to meet their needs continuously and provide care that works for them.

We are a community hospice and want to respond to the needs of the community we support. Some of the ways in which we’re able to support families are so special too and a real privilege such as going to parents’ weddings to help care for their child so they can be part of their big day too or helping them when they’re having a new baby. Recently, we arranged a two-day overnight stay at the hospice so one family could visit their daughter at university. We always try and help wherever we can.

Some of the ways we adapt our care are more practical – larger spaces to accommodate larger electric wheelchairs, bigger baths for the older children all the way down to ensuring we have enough plug sockets for all the equipment that may be needed.

We’ve got more electronic communication equipment now too from modified gaming consoles to eye gaze systems that can help a child achieve all the things other children can achieve and give them a voice. We want the children and young people to have access to as much as they can. We don’t want them to miss out. Some of the things we’ve heard them say through the eye gaze equipment is hilarious. Their personalities really come out, lots of cheekiness – I was told to go home (I think they were only joking??!!).

The new extension at the Dorset hospice is very much about continuing to adapt our care to meet families’ needs. We’re going to have a bigger bedroom downstairs in our Mermaid Suite, with a second bedroom for parents and a bathroom in between so we can hoist a child from their bedroom into the bathroom and into their parents’ room. This will really help families when we’re supporting them at the end of their child’s life, giving them their own private space to all be together. Before we started work, we shared our plans with the parents whose children had stayed in the Mermaid Suite and invited them to visit before the room was changed as it is a significant memory for them. That was really important to us.

We will also be using this bigger space for overnight stays which the children and young people love and means they can have sleepovers too, just like their friends and siblings, as we are there to provide the clinical care they need. We’ve got a bigger bathroom and bath upstairs and a hoist, so children don’t have to be moved from a chair onto a changing table and then into the bath. We hope this will be much more comfortable for them and less painful as we don’t have to move them around so much. And they get to experience all the physical and relaxing benefits of a bath, as many of them can only have a shower at home because of space. We’ve had lots of advice on the bathrooms from the older children – they were very vocal! – so we’ve got music and surround sound!

I’ve felt a bit of a nomad over the last few months, although we’ve been able to carry on our care in the community while the hospice has been closed. I’ve not gone to see the work in progress as I didn’t want to see all the mess – it’s like my second home! I’ve just started ordering all the new duvets, sheets and towels so we’ve got the colours and designs we know the different children and young people like. I’ve got to keep up with what’s in and what’s out!

When we reopen in March, it will feel like going home. Having everyone back. The nurses and carers. All the children and young people and families. A fresh start. It’s going to be emotional. I’ll be really proud too and will want lots of people to come and see it!