Families' voices highlight the value of a special nursing service

Children’s Hospices should extend hospital and community work across Scotland to support more families, writes Jane Miller, when reflecting on a moving piece of project work

Late November saw the launch of A Children in Scotland Evaluation of the Diana Children’s Nurse Service, a piece of work that I have worked on for the past two years.

The report was launched at the Children’s Hospices Across Scotland (CHAS) parliamentary reception at the Scottish Parliament, which offered an opportunity to hear from one of the families who had been supported by the service.

The three Diana Children’s Nurses have been employed by CHAS since 2014 to build capacity in palliative care services for children across Scotland. Children in Scotland was asked to evaluate the service from 2015 to 2017.

As part of the process I interviewed a range of different professionals, from across Scotland, to find out their perspective on the Diana Children’s Nurse service (DCN). Respondents told me of the positive impact the service was having on their work and how the DCNs had been able to help support the families through particularly challenging times. But, time and time again I heard from participants that the service would be able to achieve much more if there was greater capacity to support the DCNs work. As a result, the report recommended that capacity should be increased to enable DCN specialisms to roll out across the whole country.

One of the most moving and powerful parts of the evaluation was having the opportunity to speak to three different families and find out how they were helped by the service. Each family had been helped in different ways including: support with decision-making and planning, holistic support and emotional support for parents and families.

Above all else, each family expressed the importance of being able to enjoy time with their child, however short that might be. It was the simple things that made the most impression and created lasting memories. Experiences could be anything from going on a family day trip to giving their child a bath or changing their nappy. These experiences could easily be taken for granted, but held such importance for the families I spoke to because it gave them the opportunity to feel like parents to their child.

Before undertaking this evaluation, I hadn’t been to either Robin House or Rachel House and so wasn’t sure what to expect. I am going to be honest and say I was a little apprehensive before going. However, any worries I had immediately disappeared as soon as I walked through the door to Rachel House. The hospices are warm, friendly and homely feeling places with lots of colour and joy. They feel like very special places.

I’m pleased to have been involved in this process and especially to hear from families about how they have been supported by the service during particular challenging times. I look forward to seeing what happens in future to such an invaluable service.

Jane Miller is Policy and Participation Officer at Children in Scotland