Ty Hafan

the importance of short break care

Nurses are on-hand day or night to help relieve the pressure on our families. And despite all the fantastic facilities at the hospice like the hydrotherapy pool and multisensory room, as well as the many incredible therapy sessions that your support allows us to provide, perhaps the true value of a visit to Tŷ Hafan is the relief we can offer families. Knowing that their child is being well cared for allows them to switch off from being a carer and concentrate on being a family.

For families of a child with life-limiting conditions, it is often said that the night is the worst time. The need for care doesn’t end when the child goes to sleep, instead the difficulties of day time are magnified.

Sophie, a Tŷ Hafan nurse, and Paul, a Tŷ Hafan dad, sat down to discuss a night at Tŷ Hafan and the importance of nurses during short break care.

Sophie nurse appeal


The nurses take turns doing night shifts with the main difference being that there are fewer people at night. We are allocated children and at the start of the shift we will read their file and go from there.

I came in for a shift after our staff conference. The hospice had been closed for our Professional Development week, but was opened for an emergency for end-of-life care. There was a certain amount of trepidation when I got there, not knowing how the family would be, but they were well settled and their little girl was comfortable and we sat down together and ate a Chinese.

It was random really, no heroic nursing went on, but they were comfortable with us despite the situation.

The nights are really long for parents and it feels worse at night.

It has an adverse effect on the family unit too as they don’t sleep together. They often sleep in different rooms at home and when they come here, it’s the one time they can be together. Without that, a lot of families just wouldn’t survive. It breaks you down as a couple. Some couples have told me that before they came here, they hadn’t slept in the same bed together for four or five years, perhaps since their child was born. If you look at the stats on broken down relationships, you can understand why it happens.

Paul nurse appeal


The family has their bed in the flat which is great for the most part, but if they’ve spent every night next to their child, they might not be able to sleep like that. In that situation, we’d move the bed downstairs into the child’s room so they can be together.

I’m always much more reassured when a parent stays. As long as they’re sleeping well at night, the best person to have with the child is mum and dad. Parents often know best because their child’s conditions can be so complex, only they know what is really going on. We learn a lot from parents.

So important to sit and talk with the family. We show we are human and that helps build that relationship. It can be much more difficult to develop those relationships in a ward or hospital setting.

The care that they offer here actually saves families.

If the child is ill, you don’t want to be apart, because you don’t know what is going to happen. That terrible fear of not being there when it ultimately does happen, you just want to be close. When we were here, we would stay upstairs, but were down ready for him at breakfast time. But we were just upstairs and we knew if anything happened, we were just a step away.

When kids are ill, parents almost click into a non-parent mode. They are so used to it. This is what we need to do. Professional. It speeds up the whole process, helps with the stress of a situation and hopefully gets you over that difficult situation.

If an ambulance is called for whatever reason and they need to resuscitate the child for example, sometimes certain ways of resuscitating can cause more problems, so parents would know what’s best in that case. A receptive paramedic could use the parents expertise to inform their own decisions.

Every child is unique and in an emergency, things happen very fast. The paramedic’s job is to save the life and speed is of the essence, so they might not have the time to really look at the paper because it’s complicated. At least parents could help them make the best decision for that child.

It costs us £1 million every year to fund our nurses and we can’t do this without our amazing supporters, so thank you for everything you do for Tŷ Hafan.

Please help fund our nurses by donating today

Nurses are the life-blood of Tŷ Hafan. We treat Tŷ Hafan children to help them thrive. We respond to clinical emergencies. We comfort families. Our care goes beyond the medication - we bring the fun and magical moments to the children of Tŷ Hafan.