This is Dr Emily Harrop, our Consultant in Paediatric Palliative Care & Medical Director at the hospice. We found out more about Dr Emily last year, which you can read about here, but during the COVID-19 pandemic, like many of us, her job has changed a bit. She tells us what has been happening at the hospice so that we can safely continue to care for children and families during this challenging time.
This is the toughest time many of us have ever faced, and families caring for a terminally ill child feel more alone than ever. Helen & Douglas House offers an absolute lifeline and we are finding new ways to connect with families and take the pressure off the NHS.
We, like many, have had to change the way we are caring for children during the pandemic to protect our staff and our families. The hospice is continuing to care for local children at the hospice for symptom management and end-of-life care, but not for respite care at the moment, and our community team have been busy supporting families at home. This support has helped local families and their children cope at home with developing situations, such as having COVID-19 symptoms, and has helped prevent the child they care ending up in hospital.
The children we care for are vulnerable and shielding
All the children who use our services will be vulnerable and will therefore be shielding. Their families will be apprehensive about leaving home and they will be exhausted. They are caring for children who often need 24/7 care and now they are doing that in isolation, without the extended family and hospice services they rely on.
Helping our children stay at home
What we have been trying to do during the COVID-19 pandemic is to help the children we care for to stay at home, cocooned safely with their family. We have done this by maintaining regular telephone contact with all of our families. It can be mentally and physically exhausting for them and so a regular call from one of our care team can help stop a family going into crisis.
We have also delivered a hamper each month, for the past three months, which are packed full of food for the family and toys for the children. The items we have given have all been donated by local businesses and organisations and have been well-received by our families such as Ella’s (pictured).
We have also increased the number of visits we make to children in their own homes where possible, and where there is a family emergency, the children are able to safely come and stay at Helen & Douglas House as long as their is no COVID-19 risk.
The environment at the hospice has changed
The environment at the hospice is also very different from what we are used to. Most of the toys are packed away and in the cupboards for hygiene reasons, the staff are in child-friendly scrubs, made from old children’s duvet covers and we are all wearing personal protective equipment (PPE). It is very different caring for children at the hospice, or at home, whilst wearing PPE. This is particularly evident when wearing a face mask and gloves when you are talking to a child and their parents at the end of their life.
Communication is difficult with a dying child when they cannot see the empathy on your face and feel the warmth of your skin holding their hand. You realise how your facial expressions show how you feel and wearing a mask hides this important show of compassion and puts a barrier between you and the child. It is also more difficult to gauge the emotions of the parents to help them through this difficult time.
Helping with adult palliative care
I usually spend most of my time at the hospice, but recently I have also spent time with the adult palliative care team at Sobell House Hospice and at the John Radcliffe, including delivering symptom management and end of life care to COVID-19 patients. These patients were cared for on re-commissioned surgical wards, by nurses used to caring for acute surgical cases and junior doctors with little experience of palliative care. Part of our role was to ensure that these colleagues were supported and that they understood what an incredible job they were doing in the face of adversity. Four of our nurses also volunteered to be seconded to local NHS emergency response care at Katharine House Hospice. It has been great to be able to share our palliative end-of-life care skills with other nursing colleagues across Oxfordshire to help treat COVID-19 patients.
Help for Toby at home
Toby, who regularly comes to the hospice for respite care, his mum and dad all had COVID-19 symptoms, but this was how we were able to help them.
Tim Toby’s Dad said ‘One call was all it took, within minutes we were talking to senior doctors at Helen & Douglas House who gave us the advice we needed on drugs for Toby and the protocols and tips to keep us going. Those calls kept coming over the next few days as we nursed Toby through the worst of it. We believe that if we hadn’t had medical support from the hospice then Toby would have ended up in hospital, something we just couldn’t face in our poorly state. We are so grateful.’
Help for Rayyan at the hospice
Rayyan, who has a severe neurological disorder, came to stay at Helen & Douglas House recently to prevent him from having to go into hospital. He is pictured here with Dr Emily who is wearing PPE whilst caring for him.
A final message from Dr Emily, ‘I’d like to thank you, our supporter, for making a donation at this difficult time. With your support we can continue to provide vital care during the COVID-19 pandemic and beyond’.