Meet Sue Kearney, registered paediatric nurse, a paediatric palliative care specialist and our Hospice Manager. Sue leads a team of nurses, care workers, and allied health staff within our hospice in Malvern.
She’s had an incredible career in paediatric palliative care in the UK and Australia, and below she shares more about her role, why she’s so passionate about it, what parents/caregivers need to know about the hospice, and what makes a children’s hospice so special.
Can you explain your role at Very Special Kids and what it entails?
I am the Hospice Manager and support a team of over 50 staff comprising registered and enrolled nurses, personal care workers and allied health as well as helping to support a huge team of wonderful volunteers. My role is to ensure that all children and families are living their best lives whilst incorporating all aspects of best practice, research-based, clinical and psychosocial care. I liaise with many external agencies and internal committees in order to ensure that families and children are receiving the help and support that they require to help them navigate, what is often a very difficult, painful and confusing time, for them by offering respite support, pain and symptom management and end-of-life care.
My goal is to ensure that families get quality time out to be with their other family members, which is so important, whilst we care for their child.
You’re originally from the UK, can you tell us more about your career and your work in children’s hospices over there?
I have been a paediatric nurse for over 25 years. I developed an interest in palliative care when I commenced work in a Paediatric Oncology unit in Southampton, then moved on to Neurology at Manchester Children’s Hospital. My passion for palliative care strengthened when Horizon House Children’s Hospice opened its doors in 2001, the first children’s hospice in Northern Ireland. I worked with the team as a registered nurse and then went on to become the manager of clinical services. During my time at Horizon House I gained a degree in Essential Palliative Care and went on to develop competency frameworks for students and registered nurses as well as implementing research-based teaching strategies and assessment programmes.
We had the luxury of being able to collaborate with many other children’s hospices across the UK (over 40) and so was able to ensure that we were providing the best care in accordance with best practice guidelines. The help and support that children and families received across the numerous hospices inspired me and when an opportunity arose to work in Victoria’s only children’s hospice, I jumped at the chance.
What is it that you enjoy about working in a children’s hospice?
Children are a constant delight and have an inner strength that I am in awe of. If you look past the disability, past the illness and you will find a child overflowing with mischief, courage and determination. I love to see their faces light-up when they arrive at Very Special Kids, they are often struggling with pain or discomfort, but they get through the days with fun and laughter in a way that puts me to shame sometimes!
The parent/carers are warriors, they fight day in and day out for their children with very little help or support and do it with love and determination. It often feels like they need permission to take a break, take some time away, and that in itself throws up feelings of guilt that they need help and anxiety that of course no one can look after their child like they can, which is so true.
It’s quite a victory when we finally can persuade parents/carers to book their child in for a respite stay so that they can rest and recharge and generally that’s all it needs for them to see the benefits and to do it again.
What are the differences between and adult’s hospice and a children’s hospice?
Generally, an adult hospice takes admissions when the person is coming into the final stages of their illness and require specialist care. It can be quite a quick transition with little time to get to know the family or even the person who is sick.
A children’s hospice admits a child and family to their service as soon as a child is diagnosed with a life-limiting condition and this can even be before the child is even born. Most of the children go on into childhood with severe disabilities associated with their diagnosis and these conditions will often worsen over time. We have the luxury, usually, of getting to know these children and families over many years when they come into Very Special Kids for respite. We learn from the families and care for the children in collaboration with them.
When a child dies at Very Special Kids we have the luxury of being able to offer a space for the family to spend time with their child for a number of days after the death. Our staff work alongside our wonderful family support team to help counsel and support the whole family as well as encouraging memory making through art and music. We also get to spend time with the siblings and offer help get them through what is often a very confusing time.
How do you and your team manage the emotional side of the end-of-life service?
It is heartbreaking to see a family go through so much pain as they watch their child fight every day, it often becomes a fine balancing act listening to families struggles without inserting yourself into their reality. Staff need an outlet for their grief also, which is why we provide counselling, debriefs and clinical supervision after every death or traumatic event, but what we find most helpful as nurses is peer support. We each understand what the other is going through and this helps us to be able to debrief with our peers at every opportunity. We take opportunities where we can to have fun and make the most of every beautiful smile. We laugh lots, cry lots and often have the most inappropriate humour but that’s nurses for you!
What advice do you have for any families thinking about using Very Special Kids services?
Having had a sick child myself I understand what it means to ask for help, how hard it is to accept help, you think that you should be able to do this yourself, you are their parents after all, but we all need help and much-needed rest at different times in our lives and its ok to ask for it. When showing families around the hospice, I will often suggest that they don’t wait until they feel that they are sinking under the strain or getting to the point where they can’t carry on.
Book your child in for respite when all is well at home, when things are calm. Because by the time you get around to it its usually when you are at breaking point or it’s an emergency and then you only add to the stressors by introducing your family and your child to a new place with new faces.
Our staff are highly trained to care for your child/ren and do so with respect, compassion and clinical knowledge, let us take some of the burden for a while whilst you get to be parents instead of nurses. I know there is no place like home but once you’ve tried it you will never go back.
What do you think makes Very Special Kids special?
People often say that they couldn’t do what I do, that it would be too sad and sometimes it is sad, but ultimately, we are there to support the child and family and there is a lot of laughter as well as tears. We walk alongside the family during and after the death of their child, if they let us, and that is such a privilege. Palliative care is about living for every moment in the best way that you can. We fill our hospice with love and laughter, and we offer what no other service can, a multi-faceted approach to care from diagnosis right through to bereavement and beyond.
Staff will go above and beyond to ensure that the children at the hospice are making the most of their ‘mini holiday’ with us, living life to the fullest, where else can you go to work and have fun, sing, paint, play? That is what gets me out of bed every morning, how many other people can say that?