Improving palliative care for babies and their families

Categories: Care.

Through my 20 year career as a neonatal intensive care nurse based in NHS hospitals, I became passionate about wanting to improve services for babies and their families requiring palliative care. I felt that a hospital neonatal unit wasn’t always the best place for these families.

Luckily, just as I was considering how I wanted to further develop my career, Haven House was planning to expand their services to those very families. And the rest, as they say, is history!

Since I started in the new role in September 2015 it has been a hectic learning curve for me. The calm of the hospice is very different to the hustle and bustle of a hospital.

Haven House staff would also say it has been a learning curve for them on how to engage and work in partnership with these neonatal units, who are the gate-keepers to the care of these precious babies.

Another aspect I particularly enjoy is getting to know these children and families, being able to spend more time with them – rather than the “crazy busy” of the acute units – and deliver the holistic care I set out to when deciding to become a children’s nurse.

As this is a relatively new role to children’s hospices in the UK, (there are only three neonatal specialists that I am aware of) I was required to develop the role myself which has been very exciting.

I started by trying to identify a link nurse within the local neonatal units such as Whipps Cross, Queens (Romford) and Great Ormond Street Hospital (GOSH).

This contact allowed me to arrange visits and talk to a variety of medical and nursing staff at the coal face, as these are the people who need to recognise when our hospice is suitable, and feel confident enough to offer this to parents.

Although developing these relationships takes a long time I feel that I have made good progress and we have had our first few referrals, both for end of life care and transition from the neonatal environment prior to home.

I was able to support these referrals by visiting babies and parents on the neonatal unit as well as organising visits for them to Haven House, ensuring that they felt in control and been offered choice about the care of their baby.

Going forward, we are in the process of designing a leaflet for families, as well as a film for them to be able to watch while deciding if Haven House is a suitable option.

Because that is what this is all about – giving people choices. We won’t be everybody’s choice, but that’s fine, I just want to make sure they have all the information to make the right choice for their baby, family and circumstances.

I’m thoroughly enjoying my role here, the ethos of the hospice, and the impact we are beginning to have.

Hopefully, the sentiments expressed in the letter below will become the standard for those in such distressing times. The role I will have played in helping that to happen gives me great pride.

Extract from parent’s letter:

“During the absolute worst time of our lives, you helped to make things bearable. In fact, they were much better than bearable – you helped us to enjoy every precious second with our beautiful boy and allowed us to create the most special and precious memories, that give us such comfort now.”

Find out more about this service on the Haven House website, or contact Kathryn on 020 8505 9944 or at

Leave a Reply

Your email address will not be published. Required fields are marked *