Palliative and end of life care

Learn how they made the move into their role and get advice on moving to this area of practice.

Name: Adrian Smith

Job title: Head of Governance and Quality

Speciality: Paediatric Palliative Care

Organisation: Ty Hafan Children's Hospice, Sully, Wales

What is your current role?

I'm the Head of Governance and Quality for Ty Hafan. This involves a wide range of responsibilities - mostly ensuring adhering to a range of local and national policies and procedures. I am  also responsible for education, service user feedback, research activities and audit. 

What was your route to this role?

Firstly, on qualifying in 2002, I worked on a general paediatric ward at the Royal Surrey County Hospital, as D grade staff nurse. Various groups of children, including medical, surgical, oncology, orthopaedic, Max Facs etc. I then moved home to Cardiff after 3 years, where I took a post in paediatric A&E. I went from D to E grade, then got a junior charge nurse role, and also became an Emergency Nurse Practitioner. I left A&E in 2015 to take up a Lead Nurse Role at Ty Hafan.

What prompted you to do this role?

I'd been working in A&E for 10 years, and following caring for a child who was at end of life in the department, who was known to Ty Hafan, I was asked if I wanted to visit the hospice, as I'd never been there. I visited, and then a few months later, having liked what I saw, I applied for a Lead Nurse role here at Ty Hafan. I'm currently seconded to the Head of Governance and Quality role, after  three and a half years here.

What education/courses/modules have you undertaken to equip you for the role?

Lots of shadowing, with the post holder, plus having an interest in governance was helpful. Governance was covered in leadership programmes I've attended, including service improvement and networking with others. I'm aiming to commence my MSc later this year. 

How do you see yourself developing your skills?

Further experience in governance, plus looking for MSc study that will complement the role I'm doing, plus looking at shadowing others in similar roles, attending meetings and conferences, and having an active part in sharing information with other hospices and partners in local health boards.

What is your long-term career plan?

I'm thinking about maybe more governance, perhaps with a more active role in patient experience, or even education. I've also considered looking at inspection roles. 

What advice would you give someone thinking about moving to work in your area of practice?

It's hard work, but worth persevering. Keep learning, and look out for courses and training that suit you, and you can apply to your future goals. Keep a wide view on what opportunities there are for your career, as although I was fixed on working in A&E forever, this can change!

What do you most enjoy about this area of care?

I like to be able to show how we effective we are as a team in delivering safe care. It's not all about the data, but it's about what difference we make to the CYP in our care, and how we can continually improve what we do. 

Name: Carol Killa

Job title: Director of Care Services

Speciality: Children's hospice

Organisation: Ty Hafan Children's Hospice, Sully

What is your current role?

Executive Director of Care Services.

What was your route to this role?

Health Visiting, Looked After Children's Health Visiting, Corporate Nursing.

What prompted you to do this role?

To be able to work in a strategic manner to develop services which benefit children and families across Wales, while still being able to interact with families.

What education/courses/modules have you undertaken to equip you for the role?

• MA child welfare, applied childhood studies
• Middle management leadership course
• Summer school senior management development course

How do you see yourself developing your skills?

• Linking with colleagues across the UK
• Ongoing research in children's hospice provision
• Attendance at conferences and study days 
• Strategic links across Wales

What is your long-term career plan?

I'm at the end of my career but remain keen to share my experience and knowledge in any way that benefits service users and colleagues.

What advice would you give someone thinking about moving to work in your area of practice?

That you are still a nurse at all levels and you can plan care and problem solve and really make a difference to families and children if you retain compassion, commitment and advocate for your patients in all spheres of health and social care. Sometimes moving away from direct care is challenging but necessary to be the nurse you were meant to be (it's not always what you expected).

What do you most enjoy about this area of care?

Being able to make a difference from families in circumstances none of us would ever wish to face.

Name: Jayne Price 

Job title: Professor of children's nursing

Specialty: Children's nursing

Organisation: Kingston University and St Georges University London

What is your current role?

I am a Professor of Children's Nursing at Kingston University and St George's, University of London and am a Trustee of Shooting Star Children's Hospice. I am a professional lead and responsible for children's nursing undergraduate education at the joint faculty. My area of expertise has been for almost two decades children's oncology nursing and children's palliative care. My clinical background has led to an academic career where I aim to influence the care of children and families through education, scholarly publications and research. I was promoted to the role of Professor in 2017.

What was your route to this role?

As a staff nurse in children's oncology I was asked to teach some sessions in the university on childhood cancer and children's palliative care. Those ad hoc teaching sessions was how it all started and soon after I completed my MSc and PG Dip Education. I took up a full time post in education in 2000 and gained a competitive scholarship to undertake a Full time PhD in children's palliative care in 2007. Published widely and was invited to share my knowledge nationally and internationally. I moved from a university my native Belfast in 2014 and was promoted to Professor after 2 academic years there.

What prompted you to do this role?

I enjoyed learning myself and loved to garner interest in others about care and practice. Mentoring students was something I enjoyed and I think that really was the catalyst for my move into academia.

What education/courses/modules have you undertaken to equip you for the role?

• MSc advanced nursing
• PhD 
• PG Dip Education 

How do you see yourself developing your skills?

I'm always learning and developing new knowledge and skills about my specialist area of clinical practice, teaching and research. My role as Trustee has really enabled to develop my skills/knowledge related to charitable organisations, fundraising etc.

What is your long-term career plan?

It was always my plan to be a professor by the time I was 50 and I did it with a bit (a little bit) of time to spare.

What advice would you give someone thinking about moving to work in your area of practice?

I would advise someone who is considering going into children's nursing education to make contact with their local university and ask for opportunities to become involved in possibly student recruitment or some sessional teaching, this will get them known and will also give them a taste of academic life, before they make the jump.

What do you most enjoy about this area of care?

I love my job, it is certainly not a Monday to Friday job and some people still ask me do I not miss being a 'proper nurse'. I am a proper nurse and my motivation is still to ensure best care for children and families, but for me it is through the education and development of the nurses of the future.

Name: Ruth Richardson 

Job title: Assistant Head of Children's Nursing

Specialty: Children’s nursing

Organisation: Powys Teaching Health Board  

Introduction

This project is a joint engagement project with Powys Teaching Health Board (PTHB) Community Children’s Nursing Team and Ty Hafan Children’s Hospice. To overall aim is provide a good quality paediatric palliative care service within Powys ensuring that children, young people and their families receive a basic standard of care as outlined in the palliative and end of life delivery plan (2017) and supported by the PTHB Integrated Medium Term Plan (IMTP). A palliative care pathway will explore the seamless integration of care across the public (PTHB and Powys County Council) and third sector (Ty Hafan).

Background

Within PTHB, children who have a life shortening or life threatening diagnosis are supported by the community children’s nursing team, there is no dedicated paediatric palliative care nurse specialist within the Health Board. All other HBs have a dedicated nurse specialist to provide support and advice to both families and other professionals. The Paediatric Palliative Care Nurse Specialist provides care coordination for children who are at end of life. They have a direct link to the All Wales Paediatric Palliative Care Network with 24hr access to medical support and supervision for case and symptom management. The medical cover for palliative care is provided by the palliative care network and is an all wales provision. The requirement for a specialist multi-disciplinary team including a nurse with expertise in paediatric palliative care is supported by NICE guidance (NG61).

Historically Powys has received input from the paediatric palliative care nurse specialists in adjoining health boards; this is not a formal commissioned arrangement and is dependent on capacity and identified as not being sustainable in this economic climate.

Children and young people who have palliative care needs in Powys have a right to receive equitable services to children in other areas. They and their families need to know that they can choose to die at home and that there will be the support to facilitate this. An freedom of information (FOI) request for paediatric palliative care in 2017 high-lighted the above deficit within Powys. In addition to the above it is noted that families travel large distances to access palliative care services within district general hospitals in adjoining health boards. The project aims to support the potential for “virtual” clinics to be held within Powys and facilitated by the nurse specialist.

The above base line assessment is further quantified by the following evidence:

• The Welsh Institute for Health and Social Care (WiHSC) report (2015) suggests an estimated prevalence rate for children and young people likely to require palliative care services as 15 per 10,000 population aged 0–19 (excluding neonates). This would fit with the PTHB estimation of 50 children within the Powys area.
• Nice Guidance (NG61) 2016 supports that best practice include the availability of a dedicated multi-professional team for all children and young people who require palliative care services. All health boards except Powys have a dedicated paediatric palliative care nurse specialist, therefore the service provision within Powys is not equitable. The WG Palliative and End of Life care delivery plan (2017) records that there is “ Within each health board a local team of specialist PPC nurse and paediatrician” when this is not currently the case in Powys.
• Whilst the WG (2017) report supports an “integrated management model” of care, there is a risk for Children, young people and their families in Powys of a lack of joined up palliative care. A specialist nurse within Powys would provide the link between local teams and the All Wales Network.

How did you initiate the work? 

This project is a joint initiative with Ty Hafan Children’s Hospice which builds on work already commenced to improve children’s palliative care within Powys. Powys Community Children’s Nursing was invited to the All Wales Paediatric Palliative Care Implementation Group where the potential gaps in provision of palliative care within Powys were raised. Ty Hafan approached the Health Board to offer further support in the form of a community project. 

Planning meetings involving senior management from the health board and Ty Hafan and the community children’s nursing team were held and a business plan agreed.

Aim and objectives set for the project with a small planning team. Prudent principles were used as a framework to ensure the objectives fit in with health strategy. Project leads from both areas were agreed.

A service operating agreement was agreed at senior level. Agreement that the project would cover a period or 2 years with an exit plan for Powys to have a paediatric palliative care nurse specialist in place within this time. To facilitate this PTHB would host a Ty Hafan community palliative care nurse to support the building of a robust palliative care pathway for end of life care in Powys. A community children’s nurse was identified to undertake specialist training in children’s palliative care.

An honorary contract was completed to allow the Ty Hafan Community Children’s Nurse work within the health board.

Families from Powys who were already involved with Ty Hafan were contacted and information on the joint project shared.

What have the challenges to implementing the service/intervention been? And what has enabled the implementation of the service/intervention?

The main challenges has been to ensure that both parties have equal benefit and a shared agenda. This has been addressed with regular meetings between the HB and Ty Hafan project leads. The service level agreement has help to clarify responsibilities for each party. Some logistical issues in progressing the Honorary contract for the Ty Hafan Community Nurse but these have not impacted on the project.

Has the initiative or project made a difference to patients/service users and or staff? 

The project is in its second quarter and completed a scoping exercise of children with complex needs in Powys and face to face engagement with families commenced (12 families identified). A mapping exercise is now in progress to capture the complexities of managing end of life care in a vast rural area with a small population without a District General Hospital. Links with partner agencies have been made in particular the Integrated Disability Service and continuing care providers.

What are the long-term aims for the work? 

The long term aim is for Powys children and young people to have a robust care pathway for palliative to include 24-hour access for end of life care in line with Nice Guidance. This cannot be provided by PTHB alone due to the small numbers of children and young people requiring the service and therefore there is a need to use an integrated approach with other agencies and especially the Children's Hospices in Wales.

This project links with another project due to be implemented by the paediatric palliative care implementation group for symptom support clinic inreach to Powys and is also support with EOL monies to provide training for a CCN to undertake specialist nurse training.

Name: Tamara Cowell

Job title: CNS Paediatric Palliative Care

Speciality: Hospice

Organisation: Alexander Devine Children's Hospice Service, Maidenhead, Berkshire

What is your current role?

I am a CNS working within the hospice and surrounding community providing a nurse-led service dedicated to children with life-limiting and life-threatening conditions, supporting symptom management and end of life care. The key priorities of my work include:

• supporting flexibility of care and care closer to home, working in conjunction with CCN teams
• assessment of children with life-limiting or life threatening conditions
• advance care planning
• managing symptoms
• co-ordinating care, especially at end of life
• liaison with medical colleagues
• training and education.

What was your route to this role?

My previous roles include Staff Nurse upon a general surgical unit, Staff nurse withing PICU, Staff nurse for Health visiting and my last role was Children's Community Nurse Team lead for 12 years.

What prompted you to do this role?

I had significant exposure to end of life care and symptom management whilst working within the CCN team but would sometimes become frustrated that I wasn't able to provide the children and families with a more comprehensive service to manage symptoms and discuss advance care planning. I have worked alongside Alexander Devine for many years and watch the service grow and expand from providing community respite to building a 6 bed hospice. The CNS role is one that was created earlier this year in response to the caseload requirements, a medical colleague of mine suggested I apply to the post as we had worked closely providing end of life care for many years.

After working in a very diverse complex and acute CCN service, I was keen to find a focused direction to my career and gain further knowledge and skills to enable me to practice more autonomously.

What education/courses/modules have you undertaken to equip you for the role?

• DipHe Nursing- Child Branch
• Specialist Practitioner Qualification including Nurse Prescriber
• Physical Assessment of Children
• Advanced communication training
• Advance care planning.

How do you see yourself developing your skills?

I am hoping to complete my non-medical prescribing module which will enable me to formulate symptom management plans. There are further modules I would like to complete to gain my masters in advanced practice.

What is your long-term career plan?

I have always seen great benefit in the advanced nurse practitioner roles and would look to develop myself into an ANP for paediatric palliative care. Currently I cannot see myself within a non-clinical management role as I am very passionate about maintaining patient contact on a day-today basis.

What advice would you give someone thinking about moving to work in your area of practice?

Find out about the palliative care services within the geographical area you would like to work in. Many hospices run open days so go along to those and look at the different environments for in-patient care. There are also palliative care teams who solely deliver care within the child's home.

There are several introduction, 1-2 day courses for palliative care, and the RCN Competencies: Caring for Infants, Children and Young People Requiring Palliative Care are a really good place to start to complete a self-assessment for the skills needed to work within a palliative care service.

What do you most enjoy about this area of care?

I see it as a huge privilege to provide palliative care to children and their families and I am humbled by the experiences I have had over my career especially during the end of life care I have delivered.

The strength of the individuals I meet amazes me, and their willingness to invite me in as their nurse during the most private time of their life is such an honour.

Whilst I am unable to change the outcome for the children I care for, I know I am able to facilitate their journey to ensure it is as pain free and comfortable as possible, enabling them to make special memories with their loved ones.