As the Clinical Nurse Specialist (Palliative and End of Life Care) for Naomi House & Jacksplace, my priority is to enable families to have choices in the palliative or end of life care journey for their child, and to ensure that they are receiving their care, if possible, where they want it to be. My aim is to support as many children in the community as I can.
Supporting families in hospital, hospice and home
I support families who are given a devastating diagnosis before their child is born, or in the very first weeks of life, and onwards through childhood. I become involved with a family at different stages in their journey. I aim to get to know each family as early as possible so that they know me when I am supporting them at the end of their child’s life.
The support that each family needs is unique, and I will aim to be there for them each step of the way. I started supporting Archie and his family when he was just 10 weeks old.
Archie had been in hospital his whole life and had bone marrow failure. After many tests over several months, his parents were told that there was no further curative treatment available for him. The family would now be supported by the palliative care team to ensure Archie’s needs were met.
This is a very difficult and distressing time for a family. Working with the consultant doctor, I helped the parents understand what was happening and what was changing with their baby’s care. I explained why those decisions were being made, and how together, we would aim to support them wherever they wanted to be - whether in hospital, hospice or at home.
Working collaboratively to bring the family home
Working collaboratively with the neonatal unit, the medical teams, and the hospice teams, we were able to help Archie and his family leave hospital and go home for a few days. Being at home enabled the family to give Archie a childhood in those few days: visiting the beach, a farm and spending time with their wider family. Their goal was to make memories with Archie, away from the hospital and with minimal involvement from professionals.
Archie's mum said:
When we found out that our four-month-old son was due to receive end of life care, we were absolutely devastated, and we were very unhappy at the thought that the whole of his short life would have been spent in hospital with wires and machines.
We craved space to spend time together as a family, away from noise and hoped for the chance to enjoy the most of the time that we had left together. When a plan was agreed for us to go home and then into hospice, we were so pleased as it gave us the opportunity to do ‘normal’ things together and to provide our son with a small snippet of the childhood and family life that we would have hoped for him, outside of the four walls of the hospital. Whether it have been our day out at the zoo, taking him swimming or just cuddles on the sofa to name a few, every moment were memories that we made that we will always treasure.
Fiona continued:
We support medical needs, but we also help families have experiences and make memories, whether it is a walk in the park or a swim in the hydrotherapy pool at Naomi House & Jacksplace. We are with them on the whole journey, right by their side.
To enable a child to leave hospital or Naomi House & Jacksplace to go home, there are significant preparations to be made. I co-ordinate the communication across all of the professionals involved for the discharge. I ensure everyone is fully informed, removing the pressure from the family of countless telephone calls and repetitive conversations.
I collaborate with care agencies coordinating a child’s care and support. I update them on symptom management and advance care plans, as well as any changes in the child’s health condition. I liaise with local GPs, social workers, occupational therapists and physiotherapists in order to make it possible for a child to go home. I work with many professionals and with my specialism being palliative and end of life care, I can be a point of expertise for others less familiar with this.
Supporting the health care sector, in partnership
I organise my working week between the Hampshire Hospitals NHS Foundation Trust (HHFT) Community Children’s Nursing Team (CCN) and Naomi House & Jacksplace. This was a new post when I started in January 2024, and the role has been developing since then. I support the CCN teams in providing palliative and end of life care in families’ homes, predominantly in the Winchester and Basingstoke areas. In my Naomi House & Jacksplace role, I have also been able to support the CCN teams in other areas.
I work wherever it is needed to support the community approach to palliative and end of life care.
The role was developed as a collaboration between Naomi House & Jacksplace and the HHFT community service to support training and development in children’s palliative care in the community. The aim is to enable more families to receive their care at home where requested. Naomi House & Jacksplace agreed to fund the role for the first two years, with the understanding that if successful, there would then be NHS funding available going forward. With the undeniable success of Fiona’s role, positive discussions are currently progressing with the Hampshire and Isle of Wight Integrated Care Board (ICB) to invest in a number of similar posts.
Note: ICBs plan the allocation and distribution of funds provided by NHS England to local healthcare providers, like Naomi House & Jacksplace.
Families having a choice
In recent times, CCN caseloads have been increasing and children with palliative care needs are living longer. Stretched resources has meant that all options for where their child receives care have not always been available to families. More children are staying in hospital or coming to the hospice because the option of being at home hasn’t been available. Working in collaboration with our Naomi House & Jacksplace Paediatric Palliative Medicine Consultants, we aim to give families more choice and consequently reduce hospital admissions.
There are times when it is better for a child to be in hospital or hospice for symptom management and support for all the family. For some this is where they would prefer to be. But other families prefer to be at home with their child, surrounded by their family and in their normal environment. As much as it can be a challenging time, it is very important to them. When being at home is the right choice for the family, my role is to support them in that choice.
The planning includes conversations about what they need to do and who to call when their child dies. They need to decide if they want to come into Naomi House to use the Butterfly bereavement suite or whether to go directly to the funeral director. Having these conversations and making an initial plan with the family ahead of time, helps to reduce their anxiety. It enables them to make their child’s end of life stage more positive for all the family.
We will be forever grateful for the support Fiona provided to us during this time, she was so warm, caring and went above and beyond to support our family. She respected us as experts with regards to our son, which is the first time we had experienced this, due to the majority of his life having been spent in hospital. Fiona was fantastic at advocating our wants and wishes, supporting our time together as a family, and ensuring that we had everything we needed taken care of so that it didn’t take or focus away from our son. She would regularly get in touch to check in with us, answer all of our many questions and also just helped us to feel less alone and overwhelmed with what we had to face. We felt so comfortable around her and she felt like our safety net in some ways.
Support at the end of life
To support a family at home at the end of their child’s life, there needs to be a 24/7 on-call service available. However, with ever more pressure on staff time, the NHS CCN teams have found this much harder to facilitate. With the introduction of my post, we were able to offer our first Naomi House on-call service when we worked alongside another children’s hospice.
The hospice team and I were available to a family via a 24/7 telephone support service whilst they were at home. We made visits and calls to check in, and were able to answer questions about symptom management, health deterioration, as well as offering support and reassurance.
As in any challenging situation, parents often feel more anxious during the evening or overnight. With an on-call system in place they still have someone to speak to, in the same way as being in hospital or at the hospice.
When a child dies at home I will work alongside the CCN team to ensure they have the help they need. If they wish their child to stay at home for a period after death, we will support them with that care. Bereavement support is provided by our Family Support Team, an integral part of the Naomi House & Jacksplace services. All families will have access to the team for help in the necessary practical tasks after a death, such as registering and arranging a funeral, as well as bereavement support going on into the future.
There has been unequivocal positive feedback from all the families who have been supported by Fiona’s role. We are very proud to have been a part of enabling them to have the care and support they wanted at such a pivotal point in their lives. We believe this, alongside the ongoing support available from our Family Support Team, will go some way to reducing the negative life-changing impact of their child’s death.
Every child we care for leaves a little footprint in our hearts. I’m committed to ensuring that they are comfortable and have the best chance to fulfil what is important to them and their families.