The Me first Communication Champions network is a group of health and care professionals who have completed Me first training and meet three times a year for themed events, where we listen to guest speakers, share ideas and learn from case studies.
A Me first communication champion is a person who:
- Applies and promotes children and young people (CYP) centred communication in their work and advocates for CYPs in in their workplace
- actively encourages and supports colleagues to understand and apply CYP centred communication and shared decision-making with CYPs
- continues to reflect on and develop their own communication skills through self-reflection and CPD (continuous professional development) and encourages peers to do the same.
- facilitates small changes to the everyday practice of others by encouraging individual and team goal-setting to help embed lasting change
- helps to keep communication with children and young people high on the agenda in health and social care.
- shares resources, ideas and successes or challenges within the network to help improve communication with CYPs.
On 29th March we held a Communication Champions network event themed around difficult conversations and welcomed guest speaker Lucy Watts MBE. Lucy is a Patient Leader, Disability Activist, Speaker, and Writer with an MBE (2016) in services to young people with disabilities.
Lucy spoke about her own experiences having conversations about end of life care with healthcare professionals, and identified what was positive or negative about these interactions. These reflections provided so much valuable advice for the palliative care professionals in the room to apply to their own practice.
Firstly Lucy spoke about doing her first advance care plan with her palliative care clinical nurse specialist when she was 17.
‘It opened the doors for us to think and talk about death and dying, it allowed me to specify what my end of life wishes were, it allowed me to grieve and come to terms with my own death. […] At the end of the advance care panning conversation, my nurse asked me:
“So what do you want to do now?”
“What matters to you?”.
No one had ever really asked me what I wanted, for my life, what I wanted to do, what truly mattered to me’
Asking CYPs about their views and preferences is an integral element of child and young person centred communication. It allows CYPs to be treated as individuals, rather than being defined by their condition.
We focus on this question in one of the steps of the Me first CYP centred communication model: ‘How do you know what is important to me?
Lucy also spoke about taking the taboo about of talking about death, and how allowing a safe space to do so is hugely empowering for patients and families. Such conversations ‘should focus on wishes for life as well as wishes for death.’
Below are some of Lucy’s thoughts and tips for end of life care conversations in her own words:
- Take your time. I know you’re often pressed for time, but don’t try to deliver a prognosis or difficult conversation in a hurry. It will give a bad experience for the patient or their parents/carers.
- I am also a big believer of being honest.
- I also believe in there being a right and a wrong time to deliver that information.
- Try, when you talk about end of life, to ensure you open the door to open discussion of the subject for the child/young person and their parents, not just in the immediate contact, but in their lives generally.
- Sometimes the signal of a good end of life conversation is when the professional does more listening than talking.
- Allow people to talk as much or as little as they want.
- Prompt but do not steer or dictate the conversation.
- Never cut them off, try not to limit what they’re saying; and also, give them time to ask questions.
- It is also okay to go back over the conversation at the end, picking up on certain points to discuss further, or to reiterate that you understand what they’ve said, what they want and what matters to them.
Lucy’s talk really drove home the importance of empowering children, professionals and families to speak openly about death and dying. What is at the heart of making these conversations helpful is professionals having the confidence, tools and skills and doing so with a person-centred approach.
“It’s your job as professionals to open that door and give them that permission talk about it”.
Lucy also recommended the following resources:
- Difficult Conversations for Young Adults (By Together for Short Lives and the (then) National Council for Palliative Care, available on the TfSL Website):
- RCN end of life website
- Together for Short Lives’s end of life care planning for children: parents’ perspective video
- Sacha Langton-Gilks’ book Follow the Child
- Dying Matters leaflet: “What should you tell children about death?”
The next Me first Communication Champions network meeting will take place on Tuesday 4th June 2019 and the theme will be Transition.
Maura Neilson, Administrator and Website Resource Manager, Me first