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How we support older children at the hospice and beyond


How we support older children at the hospice and beyond


Earlier this year we met with Emma, our Youth and Transition worker at Helen & Douglas House. She told us about her role at the hospice and how she supports the older children we care for, from the ages of 13-19, until they move on to adult care with other healthcare providers. As a children’s hospice, we care for children from birth through to the age of 19, when Emma’s role supports their social needs and their transition to adult clinical and supportive care. 

Since we first caught up with Emma, which was before March 2020, a lot has changed at the hospice as a result of the COVID-19 pandemic. This has included us having to change the way we support our teenagers. Emma told us, ‘Like some of my colleagues, a few weeks after COVID-19 I was furloughed for a few months. Since coming back, we have all had to drastically adapt the way we work. So initially, I got in contact with the teenagers we care for, and their families, to find out what they needed and what they might like to be involved in, and how. Then I worked with them to help deliver what they needed in light of the changes.’

Like many of us, Emma has had to adapt in her role, which is mainly split into two sections, the youth support side and the transition side. 

Youth Work: Emma works with the teenagers of Helen & Douglas House, aged 13-19, that have communicative capacity. She supports our young people by arranging social activities to boost their confidence, self-esteem, and social skills, raises awareness around social inclusion, and ensures they are aware of what they can do beyond their teenage years by helping them look to a positive future. Emma meets with our teenagers either at the hospice, or visits them at their homes or schools, to talk about their lives. This helps her build long term, trusted relationships and means that she can then assist our young people to feel less isolated and more prepared for their future. Emma told us that she would often talk to them whilst playing board games which meant they could relax and feel comfortable to talk more, including sharing their worries with her.

Transition work: As well as her youth work, Emma also supports the older teenagers of the hospice, aged 14-19, through the changes from the children’s health services to the adult services. Advising them how opinions and attitudes would change and letting them know what support there is out there for anything from housing, education, work to social and even health. As they move from the safety of the hospice, into the big wide world, her role has helped the young people feel less alone and isolated and prepared for their future. Emma will also refer them to social workers and other services, where appropriate, to those who could offer support with life beyond the hospice.

The variety of Emma’s role means that every day is different. Before lockdown she might have been at her desk all day answering emails and phone calls, then the next day she might be visiting a teenager at home or school, or she could be talking to her clinical peers to find future respite or help for one of our teenagers. One thing she has developed as part of her role was starting a network Saturday youth group, giving the teenagers of the hospice a chance to meet with others in a similar situation to them on a regular basis. 

Network Saturdays

Before lockdown our network Saturday group, which Emma had been running since January 2019, would meet at the hospice for the day, every other month. She would invite the teenagers in where they could take part in activities and games, join a group lunch and have the chance to talk to other children of the hospice and staff and volunteers. They even sometimes got to meet special guests, such as Leo the PAT cat (featured below). Fast-forward to today, we may not be able to run these sessions as they were, but Emma has since re-started the network group, but with a change, as a weekly 1-hour online session. This has been working well so far and has become a great support to the teenagers of Helen & Douglas House, that is unless the internet drops out, or everyone talks over each other in excitement! But Emma tells us it has been beneficial for them all to see each other’s faces and to be in contact with each other, seeing what people have been up to and how everyone is coping. Emma can also use this time to recognise what support is needed right now. 

Emma told us that, ‘Meeting online is never the same as seeing people face to face, but it’s a pretty good alternative – it always puts a smile on my face and I finish my current working week in a very good mood. We chat, tell jokes, do quizzes (some a lot easier than others!), and have fun. We have about 4-6 teenagers attending each week. We even have some of the #network volunteers turning up to say hello too. In August we did a summer party online – I changed the background on Zoom to be a beautiful sunny beach, wore a summery outfit complete with hat and sunglasses and did a summer quiz. It was really good!’

Jasper, who has been attending #Network Saturdays for a while said, ‘I have previously attended #Network Saturday which has been a great way to spend the day and a nice change from being at home. I like the social activities they do and making friends. I can’t wait until we can attend again in person’.

One to one support

The other support Emma has previously delivered was one-to-one outreach support for a young person, either at home or in school. Unfortunately, we haven’t been able to deliver this since lockdown, but looking forward, with the right PPE, Emma is now able to slowly re-introduce being able to visit people at home, as long as they are happy and feel safe for this to happen. She tells us that she looks ‘quite entertaining wearing all the PPE’, but admits it’s worth it to be able to get out see people and to offer a bit of change for those who may not have seen anyone else other than family for a number of months. She, like our care team in-house, will have to wear gloves, overshoes, an apron, and of course a mask – ‘I look like a walking talking bit of plastic – and I gel my hands every 30 seconds!’

The future

Nobody knows when we might be able to offer our usual network Saturday meetings for the teenagers of Helen & Douglas House again, but like everyone, we are adapting our support to the current situation. In the meantime, we’ll make do with what we can; but Emma admits it is very different, and it is very weird, right now, but the support we are able to offer is also very much worth it. 

Emma finished her chat with us by telling us that the experience of seeing a transformation of a young person transition into their new life after Helen & Douglas House and going to University with the right support and becoming more independent is fantastic. Her role is all about getting people to achieve their goals, as big or little as they are. Previously, there was a young lad who I saw a few times who was struggling at home, but he has moved out and gone to university and had independence and got out of their rut at home, he has changed so much for the better.

Help us continue to support children of the hospice by making a donation of £10, or whatever you can afford, towards one of our youth club sessions. These sessions usually cost around £130 a day and you’ll be ensuring that, once it is safe to do so, our teenagers can get together again and meet others in a similar situation to them and avoid isolation.