In this feature, Jenny gives us an insight into how she supports youngsters with medically complex needs and their siblings. She tells us about the impact of the Covid-19 pandemic and how she has adapted the way she works to be able to continue this vital support.
I am the children and young people’s support worker and a member of the family support team at Naomi House & Jacksplace. I work with the children and young people who are referred to us, as well as their siblings, plus some young adults, depending on how we assess their need.
We organise regular sibling activity days for primary school and secondary school age activities, usually six to eight times a year. Some of these would mean coming to the hospice to meet together to do arts and crafts, or sometimes we have someone visit to do poetry or musical activities. We also arrange trips out to Marwell Zoo or to an outward bound centre. We have previously organised three day camps for some of the siblings, which have always been great fun.
Siblings groups can help relieve isolation for some siblings by being with others who share similar experiences. Meeting others can also help to normalise their situation, thoughts and feelings.
I also run a group for boys who all have the same medical condition, which helps to relieve social isolation. These boys have ever-changing physical needs which can affect their ability to make peer group relationships, to join after school clubs or to access some of the extracurricular activities. The need for a group became clear when families told us that as their children are getting older, they are starting to recognise their condition and their limitations, compared to their peer groups. The nice thing about that group is that they all come together. The activities don’t have to be changed to meet one person’s needs, they can all do exactly the same thing, and their disability doesn’t really come into it. They can whizz around in the garden in their wheelchairs playing tag together, whilst at school they are often limited on how fast they can go.
Because they are in a safe environment at Naomi House, and they are quite relaxed, they will open up and talk about their condition. Whilst at school, they often won’t, because other children don’t really understand what it’s like.
We did an activity with papier-maché once and, as we were doing it, one of the boys said, ‘oh they used this when they made my splint’ and one of the other boys said, ‘oh yes they did that with mine too’ and another boy said, ‘I don’t need them, but I might need them soon’. So it just opened up a conversation. They all check out each other’s wheelchairs and say, ‘I’m getting one like that’, or ‘I want those on my wheels’. It makes wheelchairs cool rather than different. It is almost the child who doesn’t come in in his wheelchair is the one who wants his wheelchair! They keep coming back, so it is doing something good and fulfilling a need.
As well as running the groups, I also do one to one work through play therapy and therapeutic support. That might include anxiety management or anger management programmes, as well as supporting those that are finding it more difficult to express themselves in a safe and positive way. Sometimes for some of the slightly older children or young people, it’s just a space to talk about things that are bothering them and to help them explore good resilience,
Referrals quite often come from parents, schools or other professionals.
One of the really good outcomes from organising activity days is that the families get to know us and that gives them the confidence to say they are struggling. I had a parent ring during the lockdown who we had only seen during the activity days. They had been bereaved quite a long time ago and hadn’t ever asked us for one to one support, but they phoned in for advice and we were able to offer some support.
The immediate impact of lockdown was felt most by those children and young people who I was already seeing one to one. That had to stop immediately, so our first big challenge was to think about how we could still support these people. Most of what I do is being with people, face to face. Children were no longer in school and I had quite a few young people that I was seeing in their secondary school. It took us a little while to work out how we could continue as we didn’t have the technology to start with.
A real priority for us as a team was to be in touch with as many families as we could. We felt it was so important to speak to each family personally to check in with them. Sometimes it was just to listen to them and hear their worries and their fears.
We did a lot of signposting; checking whether they had access to online shopping, access to the health professionals and to medical supplies they needed. We were able to read through the government guidelines and find out what was available and what the rules were.
We felt some families needed a weekly call to start with, some said they were coping well and didn’t need a follow up call. For others we were able to go and find some information for them and call them back. It was really nice, as we were in contact with families who we didn’t see as often as others. They were accessing respite but hadn’t needed to call on additional family support. I enjoyed talking to them, and I think many found it helpful just to have someone to talk to and bounce ideas off, or just to know that we were still thinking of them. We were able to help them talk through some really challenging issues, for example, whether to have carers in their homes or not.
What really struck me was that our parents are resilient. They said they had already had the worst happen, their child has a life limiting condition.
The pandemic is horrible, but actually they are used to being inside for long periods of time. They’re used to risk assessing and saying actually I don’t think it’s right to go out because there are too many risks.
There was almost a situation where you and I and a large part of the population were worrying that someone close to us might die, and actually, our families live with that every day - they have got a child with a life limiting condition. Some families were even saying, it’s helpful for others to see what they live with every day. We, as a population will get through, but when the situation returns to a bit of normality, they will still be living every day on a knife edge, not knowing what the next day is going to bring.
In the early days of the pandemic, a lot of families’ support services had stopped, for example, their regular contact with school, professionals and carers not coming in the house, not going to work, or working from home. Families were becoming more isolated. It was good to let them know that we were still here for them, even if we haven’t been able to offer the service that we normally would.
I had been seeing children for play therapy face to face, but during the lockdown, it wasn’t possible to do this online, so it was more about keeping the relationship going. We started off by talking and chatting and checking in.
With one child, we started finding things we could do together; I used some of my puppets and I knew he liked books about feelings, so I read therapeutic stories over Zoom. He was eventually able to include some things from his own home to do some imaginative play. We both happened to have Battleships, so he had his Battleships board and I had mine and we played together over Zoom.
Children were able to choose where they had their virtual sessions, this might be a family study, lounge or kitchen. Due to this setup we couldn't provide our normal level of confidentiality. The parents know what they can expect of us and we know what to expect of them and we agree all of that beforehand. The parents have to bring their child online and set them up and so we know that a parent is there if needed. We had a rule that if a child suddenly logged off, I would contact the parents and ask if everything is ok. All the families were really accepting of the new way of doing things and it seems to have worked.
I have created an anxiety management programme, using a cognitive behaviour therapy workbook called ‘Starving the Anxiety Gremlin’. I was able to work through it online with one young person, which was really beneficial. Although online contact has worked really well, it’s not quite as good as face-to-face. Equally, it has allowed some people to access support who haven’t before. I’m in touch with a bereaved young person who I’ve never met face to face. The parents asked for some online support for them during lockdown, and it’s worked really well.
Online support doesn’t work for everybody, but for this young person it has, and they might not have had the capacity to come to the hospice every week because of the logistics of travelling time or fitting in with school.
It was particularly helpful to continue the boys’ group online. We did online sessions every three weeks because the boys were very isolated. During the summer, other children could start having play dates and meeting in the park, but these boys weren’t able to do that, and even when children could go back to school, many of the families of the boys chose not to send them in, because of the health risk.
In the future it could be that we’ll do a certain number of face -to-face groups during the year, but add in extra virtual sessions so that they can be more frequent, helping to keep that relationship going.
We have organised a secondary school siblings group online, which I run with our activities team leader, Huw. We have done quizzes, played Bingo, arranged treasure hunts.
Through the lockdown we’ve arranged various activities and workshops for the groups online. We had a doodle art workshop, a poetry workshop and even linked up to the army flying museum at Middle Wallop!
There are those children who find it hard to meet online and feel uncomfortable, and there are those who actually find it more comfortable and less threatening. They might feel more self-conscious coming to a group, but virtually they are in the safety of their own homes. They have got their comfy chair or their little fidget gadget. It has allowed some to come who perhaps normally wouldn’t, or whose families just can’t fit in bringing a child to an activity day, which is brilliant.
We’ve all learnt a lot through the lockdown. I’ve researched activities I can do virtually, and there have been lots of ideas coming out online. Technology has been our biggest hurdle to overcome, it can be unreliable and there have been issues with WiFi connections and time lags. It makes it a little bit harder from a therapeutic point of view, some people might not have a great set up and it’s not as easy to do a session on a phone, and even finding a confidential space can be difficult.
I’ve had to adapt to talking to people online, but I prefer to work face-to-face, that’s why I do the job I do.
Emotionally it was quite hard in those first few weeks; speaking to so many families and hearing so many stories. I spoke to four or five families a day, hearing their stories, which is hard, especially when there’s only a limited amount you can do to help them. You can listen and do some signposting, but there were limits because we were all in the lockdown.
Jenny works closely with the other members of the family support team, engaging with all of the families who have been accepted to Naomi House & Jacksplace. They will get a feel for what new families need from the hospices, and then plan how best to support them. Some families might want to access respite or sibling support, and some might benefit from the expertise of our social worker.
The team will also be on hand to support families who are coming to the hospices for end of life care and for post bereavement support, using the Butterfly bereavement suite. This will mean giving them emotional support, but also helping with paperwork and making funeral arrangements.
"We were always close as a family support team but I feel this current situation, of the Covid-19 pandemic, has helped build stronger communication and interactions with the wider care team as we share the challenges together."
We’ve had to work differently, we’ve learnt to think differently. It has made us stop and evaluate what we are providing and how best we can support families in the future.