OPINION: Martin House Children’s Hospice helps families with its diverse and experienced team

In addition to our team of specialist doctors, we have nurses, physiotherapists, occupational therapists, social workers and healthcare workers, as well as art and music therapists. Around half the care team are nurses, most of whom are paediatric nurses, but we also have learning disability and adult nurses too. The combination of skills and experience across the care team is something everyone values enormously.

One of the reasons this range and depth of skill is so important is the sheer diversity of the conditions of children using Martin House. As a nurse in a hospital, if you work on the cardiac ward for example, you generally know most of the conditions you are faced with, but our children and young people have a wide array of incredibly complex and rare conditions.

It means every day can be different, and we never know who we might be looking after when we go on shift, but it also helps us look at the child first, not their condition, and as much as possible we have the luxury of working one-to-one with the child.

There’s also a greater flexibility around what we can do during a stay. We can go out on trips and into the garden, use the sensory room, the playroom – we focus on what the child and family want to do, and we’re looking after the whole family as well as the child.

There’s so much emotional support as well as the physical nursing care we give – never more so than the care we give after a child’s death. A child can stay in one of our cooled bedrooms for up to five days, while we support their parents and family members. It’s one of the biggest differences between hospice and hospital nursing.

Obviously, in the last year we’ve had to adapt. The pandemic means siblings aren’t in the hospice and parents who come in with their child are restricted on movement. Martin House is a very social space, so that’s been very different for everyone.

We aren’t having normal planned stays, so the children using our service are very poorly needing symptom control input, or crisis care. We’re also having to use enhanced PPE of course, and the hospice is often sectioned into hot zones when we have a child or young person with Covid. A lot of care has moved to the telephone, so we’re having really intense calls with families as we try to stay in touch and support them. Pre-pandemic, these kinds of conversations would happen while they were staying, in a more relaxed setting, like over a cup of tea. All of these things combine to change the whole focus of what we do – the hospice feels much quieter, and peer support is harder between the care team as they can’t work as closely together to minimise contact.

However, while we are having to work more separately, we are going out into the community and offering more outreach, which has been brilliant. It’s something we’ve wanted to do more of, and families are taking it up more and more now. Many of our families and young people have said they haven’t seen anyone for months, and then someone from Martin House is on their door and it’s lovely for them.

You can find out more about Martin House and how you can help at www.martinhouse.org.uk.