Hello, I’m Kay Elliott, one of the Children’s Palliative Care Nurse Specialists at ellenor. I am part of a team that provides care and support to over 100 children facing terminal illness in Bexley and Kent. We work with a team of ellenor respite carers, counsellors and therapists to offer a full package of care and support for our families.
I wanted to share a typical week with you:
I have a caseload of 18 children. It was 20 but sadly I recently had two patients die, a baby and an 18 year old. Although I am no longer caring for those children, I continue to support the families, as they come to terms with the death of their child.
Mornings often start with blood tests. These are an important part of chemotherapy treatment and need to be done first thing, so that the samples can be sent to the hospital for analysis. So my first visit was to a child near the end of their treatment. I had a third year student nurse with me; we often have students with us to help them in their training and development.
With the bloods done, it’s back to the office for the morning calls. Calls are made to families, to see how things are, arrange nursing support if required and simply to assure them we are here for them. Doctors, consultants, social workers and all others involved in the care of a child are also contacted, to ensure we are able to deliver a seamless service of care to the family.
I then went to visit a mum who was really struggling. Her son is unwell in hospital and she is being given a hard time at work. We spoke for some time and I offered her help, support and advice.
Again the day started with taking bloods from a young leukaemia patient. All the nurses take bloods in the mornings, we then bring them back to the office where we have the most amazing volunteer drivers who take them to the hospitals and ensure they get to the right departments in plenty of time to be analysed.
Each week we have a multi disciplinary team meeting where we come together with the ellenor doctor and discuss our case load. This is an ideal time to discuss issues, ensure that we have the best care plans in place for our patients and to support one another.
In the afternoon I received a call from a family worried that their child might need to go to hospital. Our aim, wherever possible, is to keep the child at home if that is the family’s wish. So I went and did an assessment on the child and helped the family to do some therapies with her. We were able to improve her condition and they were able to manage her at home. We also put respite in that evening to support them and give the family a break.
I was on call that night. ellenor offers a 24/7 service, so we take it in turns to cover the nights and weekends. Tonight was my night – but it was a quiet one.
Bloods again but this time at a school. The girl is one of three children and it is tough for mum to juggle all the children in the mornings and fit this in, so we visit her at primary school and do the procedure there. It takes about 20 minutes and we start around 8.30am, so it doesn’t really affect her schooling. We often work in schools, giving support to teaching staff and talks to students - all to ensure the care and support of the patient.
The next blood test didn’t go to plan with a three year old, who is newly diagnosed and, understandably, quite frightened by all that is going on. We had left the parents with some ‘numbing’ cream to put on half an hour before we arrive to help with the process, but when we got there it hadn’t been done. So I applied the cream myself and played with the patient for half an hour, while it took affect. It did give us a chance to bond, which was so good. English is not the first language for this family, so communication is difficult. The visit ended up taking an hour and a half but the relationship was built during this time.
One of my patients had been in hospital for some time, so I contacted mum. He was very unwell in intensive care and mum wanted and needed support. He was in London so I jumped on the train to see them. When I arrived he was on life support but this was being withdrawn. We spent time talking about their son, listening to stories of his life. We laughed together and we cried together. He deteriorated quite fast and died the following morning.
That was my week – I work part time although, just like this week it will often total the hours of a full time job. Not that I'm complaining, I love what I do and want to be able to give the families the time that they need. We often care for our patients for many months, even years.
Our weeks can vary so much, but whatever comes our way, whether it is the celebration of a child being discharged from our care following the successful completion of chemotherapy treatment or the sad death of a child and all the support the family need – none of it is possible without the help of our supporters.
If you want us to help even more children, click here: http://ellenor.org/make-a-gift