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Gareth’s blog: Supporting families to live well

In his latest blog, our CEO shares the ways in which we support families to live well.

When people think of hospices – the first thing that springs to mind for many is dying. 

But let’s talk about living. 

When a family receives the devastating diagnosis that their baby or child has a life-shortening condition, the clock starts ticking and every moment counts. 

From that point on, we’re here to support them. Whether they have a few precious hours, days, weeks or years together, we’ll help them to make the most of every moment, helping them to live well. 

Alongside short break stays at Russell House, symptom control and advanced care planning, we’re able to offer a wide range of therapies too – like physiotherapy, hydrotherapy, sensory and music therapy – all of which are critical in helping children to live well with their condition. 

Like when a child who cannot verbalise is able to communicate by making noise in reaction to music. 

Or for a child who is bed or chair-bound, except when in our hydrotherapy pool where their movement is completely unrestricted. 

Or when a child who can’t communicate is able to see the difference between colours in our sensory room and react to changes in shapes and patterns. 

Making memories

For families, these moments can mean the world, helping them make precious memories that will stay with them forever.

Like making music together with their child – and recording the session as a keepsake. 

Or splashing around in the pool together, having fun and being a family. 

Or spending precious one-on-one time with their child, completely relaxed in our sensory room, a safe and peaceful haven away from all the challenges they face. 

Time as a family

We’re very lucky to have a range of facilities at Russell House that enable families to live well, to do the things other families might take for granted but which their child’s condition might make impossible. Our specially adapted playground and garden make it easy to take a walk in the park. Our purpose-built cinema makes a family trip to the movies possible and our soft play room provides a safe, private space where birthday parties and family play can become a reality. 

Supporting the whole family

What ‘living well’ means is unique to each family, and this year we will be looking at how our services can be even more responsive and tailored to their individual needs. 

When a family comes to us for help, we’ll assess the wider needs of the parents, siblings and other immediate family members as well as the child, from the outset, ensuring that we are able to provide the mix of care and support that will make the biggest difference to each of them. 

In this way, we’ll help families to tackle some of the challenges they face, take more of the weight off their shoulders and help them navigate what additional support might be available to them. Whether that’s through collaboration and signposting to other charities and services, or developing our own support offer, we’ll do whatever we can to help families to live well. So that whatever the future holds, parents can be parents, not just carers, and families can be families, making the most of every moment.

Hospices – they are about living, and importantly, living well.