Case Study

The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.

Since 2009 NCPC has led the Dying Matters coalition. Dying Matters is a coalition of 30,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Its membership includes hospices, care homes, NHS organisations and staff, GPs, funeral directors, the legal sector, charities, faith groups and many more.

Homeward Bound is an initiative driven by Lesley Goodburn a patient leader who wanted to share the journey that she and her husband Seth made through devastating diagnosis of pancreatic cancer. Seth died just 33 short and heart-breaking days after his diagnosis.

Lesley promised Seth before he died that she would work to raise awareness of the signs and symptoms of pancreatic cancer and raise awareness of the gap between the person centred aspirations of the NHS and the reality of end of life care in an acute hospital.

Lesley wrote letters after Seth died to various healthcare professionals explaining what it felt like to be the person who is dying or the family supporting them and these letters were shared with National Council for Palliative Care (NCPC)

NCPC then commissioned playwright Brian Daniels to work with Lesley to develop a play about compassion at end of life. The play was launched in March 2016 and from there a partnership was developed between NCPC, Pancreatic Cancer UK (PCUK) and Leeds Teaching Hospitals NHS Trust (LTHNT) to develop a package of educational resources to accompany the play. NHSE and St Giles Hospice have now also entered the partnership to produce a film of the play to accompany the educational package.

The play has been seen by over 1000 healthcare professional and based on the feedback we are clear that it has a huge emotional and thought-provoking impact as shown by the world cloud below based on the feedback from 8 performances

At each performance a postcard in the form of a Homeward Bound railway ticket is handed out asking the for three actions that a person will take when they are back in their organisation along with their details.

These are databased and then followed up at 3, 6 and 12 months in the form of a ticket check towards a destination.

So far we have 500 actions that are databased and we are just coming up to our first three months check in a flavour of the changes pledged are outlined below

• Community palliative care nurse will never be late for an onward appointment and if she is late she will always phone to explain
• Nurse  –  will always think about what it’s like to be the person who is dying and change her practice
• Consultant  – will make sure that all the people involved in end of life care from cleaners and catering staff to OTs, physios, and medical staff all join up their communication so that the person and the family are at the centre of their practice
• Nurse  – will always empathise with families and imagine what it might feel like to get a diagnosis with the short prognosis

We are currently working with academics to develop a measurement and evaluation approach to the both the play and the educational resources.

The development of the play came from Lesley’s promise to Seth to share their journey through pancreatic cancer and this has now developed further in the development of an educational package with the primary objectives :-

• To raise awareness about the signs and symptoms of pancreatic cancer
• To understand the human impact of late diagnosis of disease on an individual and those important to them
• To improve communication between professionals and individuals with life-limiting illness and their families and ensuring involvement and shared decision making
• To improve the quality and experience of palliative and end of life care for people affected by pancreatic cancer

The partnership approach has developed to ensure that the objectives can be maximised by getting the support the organisations that have expertise in the relevant areas.

Initially the work to develop the play was with Lesley Goodburn, Brian Daniels the playwright and NCPC and this culminated with the launch of the play in March 2016.

Work then started with PCUK who were keen to work with NCPC to develop resources that could be used with their Clinical Nurse Specialists (CNS) and clinical support networks. Working together on the package we then enlisted the help of the palliative care, organisational development and educational team at Leeds Teaching Hospital who worked with the charities to map the national end of life competencies, the on line learning modules, the PCUK Patient Charter, the person centred National Voices I statements and the Macmillan Values standard to the scenes within the play.

To support the educational resources it was decided to film and an abridged version of the play and St Giles Hospice and NHS England came in as partners to develop the approach.

In the meantime the play Homeward Bound has been performed 12 times to over 1000 healthcare professionals at End of Life conferences and NHS Improvement events and has been supported by the Health Foundation and the Q Initiative.

The educational first draft resources as enclosed were launched at the PCUK healthcare study day in October and the package has been further developed by CNSs who volunteered to input into the process. The Film is being made in December and the final educational resource and the film will be launched in January 2017.

The educational package in still in development and the submitted draft only relates to one scene within the play, the remaining five sections are in development and will be branded and printed for launch.

This initiative has been driven from the patient and carer perspective and is an example of the determination of one person to share a thought provoking, emotive, emotional and immensely personal story in memory of the man she loved. This is a story driven by love, exploring relationships and with a clear focus on improving the empathy and compassion of health care professionals through the sharing of the story supported by educational packages.

The play Homeward Bound is an example of using the arts to portray a true and personal story of the 33 days from diagnosis of terminal disease to the death of a husband, soul mate, partner and friend. The play uses humour to explore a deep and meaningful love to give a glimpse of the devastation that a terminal diagnosis can bring. It brings forward the need for coordinated person and family centred care at end of life and how that is a partnership between all involved

The partnership approach of bringing together the people and organisations to organically grow the potential of what originally was the idea of play which has now been turned into a play, supported by educational resources and a film.

This is truly unique partnership between a person who has experienced deep and profound grief, a playwright who has turned that story into a drama that allows people to image what it is like to be Seth or Lesley. Along with professional charities that specialise in end of life care and pancreatic cancer, joining with palliative care, educational and organisational development staff and culminating with the support of a hospice and NHSE to bring together the play and the educational resources to support a film that will promulgate the messages of compassion and empathy amongst healthcare professional is unique.

Given that the play was commissioned in January 2016 we have come a long way in to realise the ambitions set out at the start of the process with development, implementation and launch of full supported package within 12 months supported by six strategic partners.

•  – Patients and carers lead the way they know what needs to improve they just need to support to turn their stories into something that will engender action
•  – Use the power of personal story telling to engage people and allow them to discard their professional personas.
•  – Use drama to help reinforce the need for compassionate at end of life by sharing feelings, emotions, aspirations and the little things that mean a lot to people
•  – There is only one chance to get things right at the end of a person’s life and what happens lives on in the memory of the loved ones forever.
•  – Partnerships can evolve as long as you are prepared to remain flexible in your thinking and that the organic approach can achieve more in a shorter period of time.
•  – The multi-disciplinary approach to the project has bought diversity of thinking and changes of approach that have accelerated the outputs and the quality of the product
• Charities, large teaching trusts, hospices, individuals and NHSE can all contribute to a project as long as everyone is signed up the ultimate goal of improving end of life care.

Watch the Presentation Here!