Q & A: A Conversation with our Clinical Lead: Delving into our Realm of Children’s Services

Who does your team at ellenor provide care and support for?

We look after any child who has a life-limiting or life-threatening diagnosis; any child who has a condition that makes them very vulnerable. A lot of what we do is supporting the child’s family on that journey, too – helping them manage a child with a complex condition and enabling them to have as good a life as possible.

How old are the children you support?

We look after children from the age of 0 to 19-years old.

We also take antenatal referrals, so – if an unborn baby is diagnosed with a life-limiting condition – the family can be referred to us then. This allows us to start those conversations with them about how life might look for their unborn baby; to help them understand what to expect, and plan ahead accordingly.

Which organisations do you partner with to deliver the highest quality of care?

We partner with local hospices such as Demelza, as well as children’s hospitals: including Evelina, Royal Marsden and Great Ormond Street.

We also work with local GPs and community nursing teams. Typically, when a parent picks up an issue with their child’s health, they’ll go to the GP – who then refers them to a local hospital. They’ll see a paediatrician there, then be referred to a tertiary palliative care team before being referred to us. But we also accept referrals direct from any professionals working with the child, parents, relatives etc.

How does ellenor work in harmony with tertiary hospitals?

Tertiary services are involved with a child’s care, but they’re not able to see the patient very often; they’re not a part of their weekly, or even monthly life. Tertiary services will see the patient when there’s a big issue: when things change, for instance, or symptoms become out of control.

ellenor has a lot more regular input with the family. We’ll see them every day; every week; every month. And walk more alongside the family during that journey.

What does life-limiting mean? And life-threatening? What’s the difference?

‘Life-limiting’ refers to an illness we know is going to get worse and worse; a progressive or degenerative condition for which there is no cure, and will sadly  result in the child’s death. We may not know exactly when that will happen, but we often have a good idea of the age a child with that condition usually lives to.

‘Life-threatening’, on the other hand, refers to conditions – cerebral palsy, for example – where a child may live well into adulthood; perhaps longer. However, these children’s conditions may compromise their ability to fight illnesses – such as chest infections – when they occur. ‘Life-threatening’ means they may not survive these challenges.

What services does ellenor provide for children and families?

We provide holistic nursing – using years of experience of working with children with complex needs to assess children, offer symptom advice and advocate for families. We can also go out to the child’s home in the local community and perform some of the tests/treatments they’d otherwise have to go to the hospital for.

We also offer respite care, where we step in to care for the child: freeing up the parents to cook dinner, do the shopping, or simply spend some time with their other children. While they’re caring for the unwell child, our team members use all sorts of creative and sensory play to help the child engage with their environment; to bring some pleasure to their life.

On top of this, we offer a range of complementary therapies: including music and play for the child and their siblings, or counselling for older family members. Having a child who is seriously unwell can put huge pressures on relationships and families – and, through therapy, we can help them navigate this stress.

We also host an annual memorial service for our families, where they’re invited to come when they’ve lost a child. It’s a safe space to meet other parents who have lost children, and we try to make it as positive as possible; helping them to keep their child’s memory alive and tell their stories.

It’s a very special day which families really value.

How do families react when you first get involved?

You need to recognise the impact it has on a family when their child is faced with a life-limiting diagnosis – it’s news they don’t want. Accepting any sort of treatment ceiling is very difficult for a family, so it’s natural for them to want to fight that.

And that’s okay – we can fight with them. But it’s also our role to, gradually, help them see what their life is like at this moment through a more objective lens. To reflect on that; to see that there are options, and that they do have some control over their situation.

You can never assume you know what it’s like for them, either – because every family is different. You have to recognise that from the get-go, and explain how you can support them, at their pace. To walk alongside them; offer support that’s tailor-made to them. To understand what their crunch or crisis points are; then explain how you can help.

Do you do anything fun for families?

Absolutely! We offer regular social events for families to meet and support one another through the difficult times they’re all facing. 

Families, really, really appreciate those events. Because no one knows what helps in such challenging circumstances quite as well as someone else also going through it.

They share practical tips and provide emotional support to one another. It’s also great for the siblings to meet, and recognise they’re not the only one with a poorly brother or sister. We enjoy it as a team, as well – being able to spend time with families on a more informal basis, and getting to know them better.

What skills does a person need to be successful in the Children’s team?

You have to be a fantastic listener.

You have to be able to empathise with parents, to understand them. You can’t ever go into a conversation with your own agenda, but instead constantly adapt to whatever that family wants, and are telling you; to be open-minded and flexible.

You need excellent communication skills, too, and to be able to think outside the box – because this kind of nursing is so very different. In a hospital, you have a problem and you’re trying to fix it; in palliative care, we can’t fix the problem. So you have to think creatively about how you can support the child and family with that problem – because if you try to fix it, you just get frustrated.

And you have to be a good team player. It’s not about your ego: the family has to remain at the centre the whole time. You have to be strong – for them.