Could you tell me a bit about your work in palliative care?
I was delighted to take up my new post as CEO of the EAPC on 1 January 2015.
I have worked in palliative care for the last 25 years, the first seven in the UK and the last 18 in Ireland.
I trained as a nurse at St Mary’s Hospital in Paddington and left there in 1990 to undertake an Oncology course at the Royal Marsden Hospital. There one of my placements was on the Palliative Care ward and from there onwards my career path became palliative care.
I have worked in many different roles within palliative care. I was a primary nurse, a research nurse undertaking clinical trials in palliative care, a clinical nurse specialist, and a nurse manager before working as an advisor on palliative care in the Department of Health in Dublin.
During my time in this post, I coordinated the development of a national children’s palliative care policy. Respite is a key component of children’s palliative care and yet it became apparent to me that very little was known about how and where services were provided.
This information is not only important for children and their families, but also for providers and planners of healthcare.
I successfully applied for a Health Research Board clinical training fellowship which enabled me to undertake a PhD full time at Trinity College Dublin.
My research focused on exploring the respite needs and experiences of parents caring for a child with a life-limiting condition requiring palliative care.
Following my research I was appointed to the post of strategic development at a children’s hospice in Ireland.
This gave me the opportunity to put into practice some of what I had learnt during the course of my PhD research. Parents wanted to care for their child at home with help. I set up a pilot project of the first children’s hospice-at-home service in Ireland providing ‘hands-on’ care in the family home.
Has there been a particular moment that has stood out for you in your work in paediatric palliative care?
I never cease to be amazed by the parents of children with life-limiting conditions. For parents, there is an enormous learning curve that takes place once their child is diagnosed or born with a life-limiting condition; for them life is never the same again.
Many parents would say that they had no choice, but regardless of their past life experience, job, education or age, parents become incredibly proficient and skilled at caring for their child, often carrying out the work of professional nurses with ease.
Prognostication in children’s palliative care is notoriously difficult, yet without knowing the duration of care, parents readily assume the role of their child’s primary carer.
As parents become competent and experienced in caring for their child, many have difficulty in trusting others to provide the same level of care.
This makes respite or getting a break really important as it enables parents to continue to care for the duration of their child’s illness.
As healthcare professionals we need to be flexible and provide care in way that parents find acceptable and which meets the needs of the child and family.
In your opinion, why is it important to focus on palliative care for children and young people specifically?
In palliative care the term ‘children and young people’ spans an 18-year age range from neonates to adolescents and everything in between, with each group having their own unique and age-related issues.
It is really important to recognise and acknowledge that Paediatric Palliative Care is a specialty in its own right.
There are many distinct differences between adult and children’s palliative care; only a small number of children die, and often death is caused by conditions that are rare and specific to childhood.
Some of these conditions are familial, which may mean that parents have more than one child with a life-limiting condition.
Predicting prognosis in children is very difficult and can be further complicated by the fact that many children requiring palliative care also have disabilities and complex care needs.
As a result of this, palliative care teams’ involvement with the family may span days, weeks, months and, in some cases, years.
Children’s palliative care encompasses the care of the whole family who are fundamentally viewed as one unit.
In order to ensure that children with life-limiting conditions and their families receive the highest standards of care, it is essential that paediatric palliative care continues to develop through education and research as a speciality.
In what way do you aim to contribute to the WHPCA board?
I am looking forward to working with the WHPCA as a board member, wearing my ‘EAPC hat’. The EAPC contributes to the knowledge base of palliative care development throughout Europe. It is recognised by the Council of Europe and is involved in several European Union projects.
The organisation has worked to establish palliative care as a human right through the development and promotion of The Prague Charter and shares learning and research through Congresses, reports, white papers and mapping documents on many aspects of palliative care.
Representing the EAPC will enable me to meaningfully contribute to the ongoing work of the WHPCA as a board member.
What, in your opinion, will be the highlights of this year’s EAPC Congress?
I am really looking forward to the EAPC congress, ‘Building Bridges’ which will take place in Copenhagen from 8-10 May 2015.
The first time I attended an EAPC congress was in 1993 in Bergen, Norway, where there were around 300 delegates.
This year we are expecting over 2500 delegates representing many different professions, cultures and countries.
With a record number of abstracts, the scientific committee has done a great job of developing a programme with a huge range of presentations which will ensure that there is something of interest for all delegates.
A key strength of the EAPC Congresses is the opportunity that they provide to network and meet with colleagues from other professions, organisations and countries.
I look forward to seeing everyone there!