Dr Bronwyn Sacks is Chief Medical Officer at Very Special Kids and Paediatric Palliative Care Specialist – Victorian Paediatric Palliative Care Program- based at the Royal Children’s Hospital and Monash Children’s Hospital.

Here she explains more about her role at Very Special Kids, how it fits within her other roles, and why she’s so passionate about paediatric palliative care.

How did you get involved with Very Special Kids?

I first became involved with Very Special Kids in 2002. I was a medical student, questioning whether medicine was the right future career for me, and I decided to take a year off university to pursue volunteer work and travel. I underwent training as a Very Special Kids family support volunteer and was subsequently assigned to support a 6 year old girl named Sophie, whose brother, Cameron was undergoing treatment for a brain tumour at the time. This experience gave me privileged insights into the experience of families and children who walk the terrifying and often lonely path of medical care for a life-threatening illness. It also cemented my commitment to completing my medical degree in 2005, and subsequently my paediatric palliative care specialist qualifications, which I completed in 2016.

What is the most rewarding thing about being a part of the organisation?

It has been an incredibly rewarding 18 years working with Very Special Kids. Over this time, I have been privileged to see first-hand perspectives of children, families, volunteers, family support practitioners, nurses, allied health staff, doctors, and management within the organisation. I have watched Very Special Kids grow and I have grown with it, both personally and professionally. In that time, I have transitioned from a family support volunteer, to a visiting medical officer at the hospice, to my current role as chief medical officer of Very Special Kids, whilst concurrently progressing my career as a paediatric palliative care specialist with the state-wide Victorian Paediatric Palliative Care Program based at RCH and Monash Children’s Hospital.

Is there much crossover with your role at Very Special Kids and The Royal Children’s Hospital?

I feel fortunate to work across multiple organisations, including Very Special Kids and RCH, which provide exemplary care for an under-represented group of children with palliative care needs. For my patients, who frequently transition between home, Very Special Kids and hospital, my roles at VSK and RCH certainly give me the unique opportunity to understand their experiences more deeply, and to promote holistic, streamlined, patient- and family-centred care across different health-care settings. By working collaboratively with a focus on the child and family at the centre, RCH and VSK have been able to deliver the most extraordinary care at a time when families often feel helpless or hopeless. An example of this is the transfer of a sick child from ICU at RCH to VSK, to receive end-of-life care outside the acute hospital environment. These experiences require mobilisation of ICU clinicians and specialised transfer vehicles to facilitate transfer from RCH to VSK (or home), in addition to specialist palliative care staff to receive care of the child and continue to provide end-of-life care. These experiences have shown me what is possible with tremendous teamwork, compassion and skill, and the lasting impact for families navigating the most difficult times.

What is your contribution to Very Special Kids? What is a typical day for you when you work for them?

There is no such thing as a typical day at Very Special Kids; every day is a bit different. As a visiting medical officer, I work with 3 other doctors who share the on-call roster and provide a week of around the clock medical consultation for children who are staying at the hospice. A typical week involves several visits to the hospice to review children who are there for respite, or multiple daily visits to those admitted for end-of-life care. In my role as Very Special Kids chief medical officer, I provide medical guidance on a variety of issues as they arise, most recently COVID-19. I support the client intake and eligibility process and am involved in clinical risk and governance activities.

Do you have a favourite memory?

I have so many fond memories of my time with Very Special Kids. Some of my favourite memories centre around Sophie, and the relationship I developed with her and her family as Cameron underwent treatment for his brain tumour. Cameron is now a healthy young man who has completed a double degree at university, and I continue to share a very close bond with the family. I have memories of teddy bear picnics and children’s tea parties in the magnificent VSK gardens, horses and celebrities visiting the hospice, music and art therapists bringing smiles to the children’s faces, and memories of the hospice bringing calm and unimaginable joy to families and children in their most painful hours, as they near the ends of their lives.

How important is an organisation like this to end of life care?

It goes without saying that the death of a child must surely be one of the most painful and unnatural experiences any family could endure. The loss of a child brings immeasurable grief, vulnerability, and fear. We know that offering choices for children and families in this context provides families with a sense of control at the time, and comfort into their bereavement. Whilst many families feel most safe at home, or in hospitals that have been like second homes over their children’s lives, Very Special Kids provides an alternative physical and emotional environment where they can simply “be parents and children” rather than “carers and patients”. The hospice is supported by the most passionate, skilled and kind group of volunteers, nurses, family support practitioners, carers, doctors, allied health, music and art therapists.

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?

 

 

 

How long have you worked at Very Special Kids?

I’ve been employed at Very Special Kids with the Family Support Team since May 2008 – 12 years.

How would you describe your role?

My role within the Family Support Team as a Regional Practitioner is very diverse and at times challenging. I currently support 53 families across the Hume Region and almost half of those families are bereaved. Prior to COVID-19 a normal working week would include counselling and emotional support to family members, either by visiting them at home, Hume Region office visit, phone, Skype or Zoom. Supporting families through the development and planning of family days, pamper days, joint events with Loddon Mallee worker, coffee mornings and bereaved coffee mornings.

Another aspect of my role is community engagement in the form of presentations to community organisations, regional hospitals and other health sector organisations, involvement in Hume Region Bereavement Network & Palliative organisations. The Ballarat Family Support Practitioner and I are to head up the Bereaved Parent Weekend which has now been rescheduled from end July 2020 to May 2021.

Describe a moment at Very Special Kids that stands out for you.

I will never forget the joy that I saw on Aiden Koch’s face at a Christmas party in Shepparton, as he went for a ride on a Harley Davidson motorbike. Aiden also loved horses and was able to have a horse ride at Riding for Disabled in Shepparton. Because it became more difficult to transport Aiden, three volunteers from RDA took a little pony called Pirot to the family’s farm in June 2013 so that Aiden could enjoy another ride. We didn’t know if it would happen because of threatening rain but Bonita & Merv were determined that Aiden would get his ride.

As he rode that pony Aiden’s face lit up and he loved every moment, even if we all did get wet. Tears of joy were shed that day.

How long have you supported the Koch family?

I have supported the Koch family since 2011. Over the last few years I have been inspired by the strength and courage of Bonita and Merv Koch as they faced the ongoing challenges to ensure that their beautiful boy Aiden’s life was the very best that it possibly could be. Sleep deprivation and exhaustion never stopped this couple from treasuring every precious moment of Aiden’s short life, and never losing hope. What stands out about this family; Merv, Bonita, Aiden, & Amber are the close relationships, each with the other, and the strength of their love for each other.

Aiden was an amazing little boy and although his life was emphasized by struggle, his strength, courage and his love of life enabled him to fight his way through many health crises.

How do you provide support to the Koch family?

Supports provided to the Koch family include ongoing counselling and bereavement support; both individually and as a family. Prior to COVID-19 counselling has been a mix of home visits, individual sessions at Very Special Kids’ Hume Region office and by phone. We have recently moved to Zoom and phone counselling support due to the situation. The family have actively attended local events and parent groups and have also attended the Malvern based Remembrance Day service.

Can you describe some of the challenges you normally face in your role as a Family Support Practitioner and what has changed during COVID-19?

Some of the challenges within the Family Support Team as a regional worker are the effective provision of support to regionally isolated families, the number of families on my caseload spread over such a large region, the issues around connectivity via Zoom or Skype where there is a lack of reliable Wi-Fi, size of my caseload with current families in Hume (now 53). It has been very challenging to support the numbers of families during COVID-19 while working from home. The usually highly diverse role is currently restricted to online & telephone or email contact and support to families. With some families having unreliable network or phone connections, the issue is exacerbated.

What does end-of-life care at Very Special Kids mean to the children and families we care for?

Because I am a regional Family Support Practitioner I have had minimal experience of end of life care at the hospice. Another bereaved family on my caseload whose baby girl died at the hospice a few years ago spoke very highly of the medical care and support their child received in the final days of her life. As a family they felt totally supported through the sensitive, compassionate care they received as a family at the hospice which helped them in their ongoing grief.

What’s involved in supporting children and young people receiving end-of-life care at the home?

Travelling alongside families whose child is dying or has died and sharing the intimate loneliness of the death of a child is a huge privilege. My role in the deteriorating days of Aiden’s life, as with many other families, was the provision of practical and counselling support to the whole family.

Following Aiden’s death, I was invited to spend time with, and support the family at Very Special Kids Hospice. It was an honour to be included in this precious and sacred space and is something that I will always remember and hold near to me. Simply sitting with the family in their grief and being present in that time.

How do you support the whole family through this experience?

Ongoing bereavement support is provided to families for as long as they need it. The support is offered through bereavement counselling and other bereavement programs available through Malvern and within the Hume Region.

How do you think COVID-19 is impacting the families supported by Very Special Kids?

Some families report that they are managing well and enjoying being able to be at home with their families. Others, and vulnerable or more recently bereaved families are indicating a further sense of isolation compounded through COVID-19.

What support is available to you as a professional working in paediatric palliative care?

Very Special Kids provides a beautiful culture and supports staff in many ways. Ongoing individual and group supervision sessions are complimented by the opportunity to seek external support and supervision as needed.

How do you look after yourself and recharge at the end of a difficult workday?

My home is on 20 acres with 10 acres of beautiful forest garden and has 5 labyrinths where I can meditate and reflect. I love to garden and working with plants, trees and the soil is very restorative.