One of the special things about our care at Helen & Douglas House is that we’re able to offer it to children in the place they feel most comfortable. For some, this might be coming to the hospice for supportive stays, and for others, it might be caring for them in the comfort of their own home. We are even there for children whilst they are still in hospital and support them through the transition from NHS care, to the hospice and then home.
We have Clinical Nurse Specialists that make up the Outreach team at Helen & Douglas House. As part of our wider care team, they help to support around 180 local children (on our caseload) who are living with life-shortening or terminal conditions. Thye Outreach team’s role is to help to provide a seamless link for children and their families between the hospice, the hospital, their GP and home.
Before a family comes into our care a member of our Outreach team would, quote often, be the first person they meet from the hospice. During this first meeting, which is usually when the child is in hospital and shortly after their diagnosis, they will undertake initial assessments of the child. They will also give them more details about the services we can offer at the hospice and the ways we can support the whole family. Families often feel nervous about the concept of going to a hospice before they visit us, but our Outreach team is there to put their minds at ease and answer any questions they have. Once they agree to look around they will help to set up their initial visit.
Coming to Helen & Douglas House
Once a family decides to bring their child to Helen & Douglas House the Outreach team will often be around to help greet them when they arrive. A friendly familiar face is so important to them, especially in uncertain times. Then, when they stay at the hospice for supportive stays, symptom management or end-of-life care the in-house care team, and the outreach team member may well be involved or oversee some of their care, but this will be managed by the in-house team. When they go home, the Outreach team will continue to support the family with, for example, writing advanced care plans and planning for how their care will continue as needed when they go home. It is incredibly beneficial for families to have difficult conversations at an early stage of their children’s diagnosis so that, if the worst happens, they feel prepared and any care plans are able to be put in place.
At home, if I cannot get through to the hospital teams, I will call Helen & Douglas House for advice. This is so reassuring as I sometimes worry how serious a new development might be in Josh’s condition, and it gives me the confidence I need. The Outreach nurses are such an amazing support for me and I regularly touch base with them. They never make me feel like my questions are silly and are so keen to help.
Helen House has also come to our rescue when Josh was discharged from the hospital. They helped us get to grips with a new feeding and medicines regime, which would have otherwise meant a prolonged hospital stay.
– Clare, Josh’s mum
End-of-life care at home
The Outreach team work with parents to support and empower them to take their child home, particularly for end-of-life care. If a child is in hospital and is very poorly, and it looks as though things are not going to get any better, they will spend time talking to them about where they want to be and help to facilitate their wishes, if a plan is not already in place. They would then either bring them to the hospice, support them if they want to stay in the hospital, or in some cases, help them to go home. This often involves working alongside their local health providers to provide specialist equipment. When a child dies, if they are at home, the Outreach team will help to support the child’s family and, if appropriate, arrange for them to bring their child to the hospice, or provide specialist equipment should they want them to stay at home before the funeral.
More about Outreach Nursing
Our Outreach nursing team was first set up in 2011 and has been an essential part of our service ever since, but grown during and since the Covid-19 pandemic. The fundamental aim of our Outreach nursing team is to give flexible and personal support to children with life-shortening conditions in the community. Our Outreach nurses are able to improve the quality of life for children in the saddest of circumstances, support their families and work with other healthcare providers, as well as other members of our care team, as they work towards the same aims of making child living with life-shortening and terminal conditions as comfortable as possible. The team’s biggest achievements is empowering families to take their children home, particularly in the case of end-of-life care.
Our Outreach service provides children and their families with a vital degree of flexibility and choice and allows them to choose where they receive our expert support. In many cases, the young children we care for often feel more relaxed in their own surroundings with their families, friends and their favourite toys, which in turn can significantly benefit their health.
Roman’s Story
Roman was a little boy, who we supported for over nine months. He died when he was just 10 months old. When he was referred to Helen & Douglas House he was very little with a complex cardiac and liver condition, which were unfixable. Together with the in-house care team, the Outreach team also spent a lot of time managing his symptoms as his illness progressed. This was alongside regular visits to the hospice, both planned and emergency. When Roman died, the Outreach nurses were there to support the family with funeral plans and care.
“We created a robust symptom management plan and medications to help manage his symptoms and his pain. Over the months we worked very closely with his local children’s community nursing team, and with Rennie Grove hospice, to provide the 24/7 support they needed.One of the special things we did was to enable his family to take him to the beach on holiday – it was a very special place for them. We worked very closely with the local children’s hospice in the area, in East Anglia which meant they knew they would have local support whilst they were away, in case they needed it.”
– Becky (Former Outreach nurse at Helen & Douglas House)
£50
£50 could pay for a nurse specialist to visit a child at home to control their pain.