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Meet the team: Partnerships putting people at the centre of care

Also:

  • Dr Irene Carey, Consultant in Palliative Medicine
  • Rachel Hill Head of Nursing for Palliative and End of Life Care GSTFT
  • Susanna Shouls, AMBER design team GSTFT
  • Charlene Davis Programme coordinator GSTFT
  • Anita Hayes, Quality Improvement Associate
  • Claire Henry, Director for Improvement and Transformation Hospice UK

Our challenge

We have developed a play and educational resource “Homeward Bound” to inspire clinical teams to reflect on the importance of compassionate person and family centred care for patients towards the end of their life. This play is based on the lived experience of Lesley and Seth Goodburn and shares their story following Seth’s late diagnosis of stage 4 pancreatic cancer. 

There have been over 150 performances of the play across the UK including presentation to Guy’s and St Thomas Clinical Champions Network. The play won the partnership at the 2016 Patient Experience Network National Awards and was a finalist in the compassionate care category in the 2017 HSJ awards. The educational resources has been downloaded over 200 number of times.

Seth’s / the Homeward Bound story reflects times when recovery was uncertain.  

Uncertain recovery is a complex and emotive area. There are a number of existing barriers resulting in clinical teams not letting people “into the secret” of how unwell someone is or think they have, but haven’t. “Homeward Bound” highlights some important challenges: even if someone is very “health literate” and usually confident, in these situations it can be hard to know what you want and when you do know, it can be hard to be heard. Compassion and empathy is needed all the time.

The AMBER care bundle is a communication tool to help clinical teams to recognise and act when patients have clinical uncertainty of recovery.

Training and education interventions are necessary but not sufficient to sustainably improve quality.  Connecting the power of the story, with training and education and clinical systems improvement may go further with a better understanding of:

  •       How to help patients and families to acquire the “power” they need and wish for when they are acutely unwell and there is clinical uncertainty of recovery
  •     How and if the ways of providing care can be designed to ensure consistency of good communication and empathy

The aim is to:

To ensure that patients are encouraged and enabled to have conversations about their wishes and preferences for care at a time when they are most likely to feel vulnerable and their clinical situation can be unpredictable.

We aim to achieve this by:

Understanding what could help patients and families in periods of uncertainty

Exploring the current language used by patients and clinicians by using the “Homeward Bound“ narrative as a catalyst to initiate discussions and move towards a shared understanding of vocabulary and likely cues expressed.

Supporting the wider education and understanding about clinical uncertainty of recovery,

Understanding what if any health literacy approaches and /or improved information and resources would help patients and/or those important to them 

We intend to:

Review available and relevant information and communication resources

Based on this, develop resources (including navigation to existing resources and/or co-design new resources as required) and new approaches to care for patients, relatives and clinical teams to enable “certainty at a time of uncertainty”.  This may include: conversation prompts, materials in wards, handover of main points in important conversations.   

Apply quality improvement methods to test and develop these together with people with lived experience and clinical teams. 

Anticipated Benefits of the Project

  • Greater understanding of what is important to patients / families when they are acutely unwell to enable appropriate shared decision making
  • Resources to help patients and their families when there is clinical uncertainty of recovery (either new or navigation to existing resources)
  • Create more supportive open and honest conversations with patients and families to make decisions about “what’s important to me”.
  • Alignment to clinical systems improvements
  • Improved ability to meet patient’s wishes and preferences for care
  • Developing an understanding of narrative and language during a transition and how to best co facilitate care planning and delivery of care.
  • Understanding the human relationships involved in the context of uncertainty using a relational value survey developed by Whole Systems Partnership
  • Building knowledge and peer support with the Hospice UK people in partnership
  • It would align with the Q Peer support work in supporting peer support principles of
  • underpinned by values and principles that
  • recognise people’s resources and potential,
  • driven by what people want and need,
  • co-produced and provided by people with experience of living with the condition,
  • It establishes a culture of mutual benefit and sharing experiences with each other as equals.

Anticipated Benefits to Q community

  • Keeping the focus on quality and the essence of the story in Homeward Bound
  • Build to the evidence of why we need to put patients and those important to them at the centre of care and that communication is an active ingredient of care but needs to be honest yet compassionate
  • Adding insights on how it is possible to cede power to patients and those important to them, when there is clinical uncertainty and the unfamiliarity of the situation can be disempowering
  • Wider awareness of existing resources and materials
  • An opportunity to support wider roll out and adoption of resources
  • We would envisage wider roll out via existing networks within Hospice UK and the AMBER Network so support from the Q community to share and support transferable learning would be important.

How you can contribute

  • Any advice about patient activation measures and existing data sources in the context of patients with clinical uncertainty of recovery in hospital or patients who are acutely well
  • Any advice and learning regarding patient resources used in other care settings in supporting conversations when uncertainty is present

Comments

  1. Dear Lesley,

    I think the idea of linking Homeward Bound with Amber is a useful one. Highlighting exactly what uncertainty might look like when teaching on how to deal with uncertainty strikes as very sensible!

    Full support from me...best of luck!

  2.  
    Thank you Lesley - this is innovative and important . We have been holding a number of discussions also with our AMBER faculty - our colleagues in other acute Trusts about how we can best create an environment that allows patients and their families to be better able to let us know what is important to them. This will help us to give the right individualised care for them, at the right time  during a challenging time when someone is very sick and may not recover . Creating an environment where there is compassion and empathy is central to our work .  
     

  3. Hi Lesley. Great to see your bid and the links it has with the Q Lab’s peer support work. You already know what I think of your stories work, and I’ve just had a look at the Homeward Bound educational resource, which is inspirational. When I was reading through your bid this animation popped into my mind, which might be interesting / useful – ‘Behind Closed Doors’https://www.health.org.uk/behind-closed-doors

     

  4. Fully support this Lealey - good luck

    1. Thanks Bev would you be a star and hit the blue support button

  5. Guest

    Clare Kendall 2 years, 11 months ago

    Good luck Lesley-this is a fantastic resource to help healthcare professionals really understand the perspective of the person receiving care. We benefitted hugely from a performance of the play at North Bristol NHS Trust and would highly recommend it to any healthcare professionals who care for people near the end of their life.

    1. Thanks for your support Clare and I am so pleased that Homeward Bound made a difference for you and for the trust

  6. Hello Lesley

    Thanks for the tweet - so many bids it helped direct my attention (LOVE TWITTER)... I think your initative, your passion, your play, your story, and just you are the best catalyst for change and improvement. Indeed, for listening to people who are experiencing care as they know so much more. Our Solent NHS Trust QI programme has benefitted from your insight, humour and wisdom over and over again, and I'd love for others to have the same privilege.

    So, of course I support this bid. I wonder, though, if it would help if you amended the wording slightly in respect of QI, patient voice/ experience etc.... would make it stand out to other's that don't know your work as well, and make it sound more like QI, less like pure pt safety? It's just about the marketing.. :)

    hopefully see you soon - love watching all you are up to on twitter

    Sarah

    ps -  our bid, wink wink https://q.health.org.uk/idea/putting-patients-and-families-in-the-driving-seat-of-quality-improvement/

  7. A fantastic project proposal. We have recently benefited from the Homeward Bound play at North Bristol NHS Trust, using it as a powerful resource to engage staff with our trust wide project on End of Life Care: The Purple Butterfly Project. This true story is an invaluable tool for us all to learn from, putting patient and family experiences at the heart of any service re-design/improvement. I commend your courage Lesley. Best of luck and I hit the 'blue' button of support.

    1. Thanks for your support Vardeep

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