‘I get the children laughing and I create happiness for that family’

I qualified as a paediatric nurse in Liverpool in 2001. When I moved back to Ireland I worked in Our Lady’s Children’s Hospital in Crumlin, though I moved to Australia for a while. I’ve worked as a staff nurse in neonatal cardiology and as a clinical nurse specialist in orthopaedics. I moved into pallative care at Laura Lynn in 2012 and I’m currently doing a masters in palliative care at Trinity College Dublin.

This was something I’d always wanted to do. When I was working in hospitals, especially in the neonatal area, I felt there was always some need there. Hospital can be a good place for children, if that’s where they need to be, but often families need or want to take their child home.

When Laura Lynn was fundraising and developing, it seemed like a better way for families to have that end-of-life time for their child. I saw something I was passionate about. I felt I needed to do whatever I could to make the most difficult time better for the families.

I’m on one of the two home-care teams and we cover counties Meath, Cavan, Monaghan, Dublin, Wicklow, Kildare, Loais, Offaly, Longford and Westmeath. There are four staff nurses and three healthcare assistants. We’re a free service and we provide the care of nurses who are trained to work with children who have diagnoses of life-limiting illnesses. I worked with adults during my training and my studies, but children aren’t small adults.

Continuous assessment

Every week, I have certain children and visits. I visit the house and give my assessment of the child. I link in with the family when I arrive at the house and see how they’ve been since my last visit. I do continuous assessment and symptom management. I might deal with medication, and with the child’s feed, whether this is orally, via a peg tube [percutaneous endoscopic gastrostomy], or NG [nasogastrically].

I also do interactive and developmental play, sensory stimulation, art therapy and memory making.

I involve the family in their daily routine, but I also give the parents a break when they need it. Basically, it’s providing specialist respite care within the home, enabling the family to be themselves while having a break if that’s what they need.

The number of children I see in a day depends on each of the children. On average, a visit lasts about three or four hours, so I could have two visits in a day. I don’t necessarily go to the same children each time; all the members of the team link in and we all know all the children, so we are able to go out and work with any of them at any time. It’s very team focused.

If we have an end-of-life case, we come together and regroup. If we need to rearrange visits with other children or put extra supports in for that end-of-life case, that’s what we do.

I do assessment and care planning for each child. It’s very individualised. I make sure that everything is documented. Because of their complex needs, each child needs to have everything specific to them. The parents sit down with me and we develop it together, so they have everything we have. If they feel things are changing with their child, we can assess and go back to the care plan and change it where necessary.

Fitting in

with the family I

get to know the children quite well. The child is obviously my focus but I involve the siblings, parents and grandparents as much as possible in all activities, just to make all their memories. I do things like handprints and family trees, which bring the whole family together as a unit, again for memory making, to keep that child present within the family.

I work with the family to make sure I’m there as a support. They have their routine and I work with them to figure out how I can help them. I’m not there to overstep boundaries or take over from the parents; I’m really there as a support. I fit in with all aspects of their routine.

I link in with all the different therapies that are available in Laura Lynn, such as play, music and occupational therapy. If I feel a child would benefit from one of the therapies, I make the appropriate referrals.

Obviously, the most difficult part of the job is when I lose a child. Symptom management is very good so, thankfully, I don’t see children in pain. If that is an issue, it can be very difficult, but it’s dealt with quickly. Being in the house gives me a chance to be able to tell the relevant people that medications might need to be changed. It means the family don’t have to pack up everything and get to a hospital.

I have to be very professional about it, but obviously I’m dealing with children. It does affect me; I couldn’t do the job if it didn’t. But I’m there to support the family and to try to ensure that, at the toughest time for them, I’m making it as easy for them as it possibly can be.

With end-of-life cases, in particular, I have to have self-care and discussion with colleagues. Just talking about it and not holding things in is important, but we also have clinical supervision, so we have that space once every six weeks. If we feel we need anything on top of that, we can contact them and make another appointment. There’s also a psychologist within the service.

Safety net

The parents really appreciate us being there and it’s a safety for them to know that we’re there and have the abilities to help look after their child. Their lives still have to go on and they still have to do normal day-to-day duties with their children, with their family and friends. They still have to do the shopping or the school run and they know if they need to leave the house or just need to sleep, their child is being looked after and cared for by somebody experienced.

Getting feedback from the children is so rewarding, when doing any sort of activity with them. When I have that reaction back – the smiles, the eyes looking up, the family’s joy and laughter within the home – it’s lovely. I get the children laughing and smiling, and I create happiness for that family. It might be a very tough, very sad occasion, but I’m helping to make it as happy as possible.