In this Forum article, the authors describe the ‘Small Steps, Big Vision Grab and Go Guide’ with its focus on children and young adults
Authors:
Holly Smith, Acting Matron – Children & Young Adults Service St Oswald’s Hospice Gosforth Newcastle upon Tyne, NE3 1EE UK,
Diane Nicholson, Sister, Children and Young Adults St Oswald’s Hospice Gosforth Newcastle upon Tyne NE3 1EE UK
Claire Henry MBE, Visiting Fellow The Open University, Walton Hall, Milton Keynes MK7 6AA, UK,
Professor Erica Borgstrom Professor of Medical Anthropology & Open Media Fellow The Open University, Walton Hall, Milton Keynes MK7 6AA, UK
Imagine never having your thoughts or feelings considered during the most difficult moments of your life. Your likes and dislikes unspoken and your attempts to communicate your wishes not understood. This was a concern of the Children and Young Adult (CYA) team at St Oswald’s Hospice, which has inspired research projects and led us on a journey with The Open University (OU) and the fantastic work they have done on a Grab and Go Guide (Small Steps, Big Vision), in response to the Ambitions for Palliative and End of Life Care. This blog – written by two Senior Paediatric nurses supported by members of the OU team – shares experience of adapting the Grab and Go guide focusing on children and young adults services.
National guidance in practice
The Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026 is a framework developed by a range of organisations, including the NHS, social care, ambulance services and voluntary sector organisations (e.g. Marie Curie, Macmillan, Hospice UK and Sue Ryder). The framework provides a vision and guidance around six ambitions and eight foundations to improve care in England. Launched in 2015 and re-launched in 2021, it is supported by over 30 partners from both the statutory and voluntary sectors. It was embedded in the statuary guidance for the Integrated Care Boards as part of the Health and Social Care Act 2022. Based on in-depth research conducted at The Open University, the grab and go guide was one of the practical outputs which focused on the foundations necessary for realising the vision in the Ambitions. The grab and go guide was created with all services across the life course in mind. In 2024, St Oswald’s had the opportunity to work with The Open University to revise the grab and go guide focusing on children and young adults’ services.
What is the Grab and Go guide?
The Grab and Go guide lists 10 elements deemed essential to achieving the ambitions, acting as a guide to ensuring optimum care. On the guide, each element has three sections: a definition (What), a series of prompts to think about (Ask), and a space to provide examples of how this is put into practice, to illustrate how it functions in reality (Examples in Action). As part of our work on re-designing the guide, we thought about how the definitions and prompts needed to be adapted to reflect the concerns of children and young adult services. For example, we switched the word ‘patient’ to be clearer that the focus is on children and young adults. The Grab and Go Guide allowed us to stop, review and reflect on our service, ensuring we don’t remain stagnant in our approach. Each step clarifies what is needed and asks pertinent questions that shape how you will put it into practice. Engaging with this work has given us this chance to examine what we currently do for those Children and Young Adults requiring Palliative and End of Life Care and how we can improve it.
Co-design
Here is an example of how we re-worked the section on co-design, to focus on CYA and to showcase what we do at St Oswald’s to hear the voices of and collaborate with children and young adults.
What: Designing services in collaboration with CYA when able and their families including siblings who have personal and professional experience of palliative and end of life care. Methods of engagement can be creative, participatory, and experience based. Co-design should embrace diverse views and not be limited to service provision commissioning decisions.
Ask: What knowledge do I have about co-design? Who are we involving (individuals and organisations)? How do CYA/families want to be engaged with? Who is best placed to facilitate co-design processes? In what ways do we actively involve CYA/families in designing a service and making decisions about how we provide care? How are we learning from CYA/families lived experiences, their support needs, and what care and support they access and want to access?
Example in Action: Children and Young Adults involved in the building design process.
Children and Young Adults involved in interviewing and questions in the recruitment of staff.
Connecting with non-verbal children and young adults – “Finding Lost Voices” research (– Nicholson 2024)
Our reflections and top tips for using the guide:
Our vision at St Oswald’s is that: “together, with others, we will make the most of time and improve quality of life for everyone, of all ages, in the Northeast who are living with a progressive life-limiting condition, and for their families and carers too”. The St Oswald’s values set out how we work together to deliver care for those in need and their families and carers, as well as how we care for each other.
The Values include:
Safe and Supportive
Positive and Can Do
Accountable and Authentic
Caring and Compassionate
Excellence and Innovation
These are at the core of our practice. We (Holly and Diane) see these values in the Ambitions and used the Grab and Go Guide to reflect our values in the prompts and examples of action, helping us to think about how our values show up in our practice.
Using the Grab and Go Guide as a starting point to think from referral and throughout the Children and Young Adult’s time with the service, allows us to meet our vision in an equitable and structured approach. Ensuring their voices are not lost in the mix of clinical teams, and systems that they find themselves in.
With the support of The Open University team, it has enabled us to review and promote our current practice which will use as evidence to our regulator the Care Quality Commission 2004 https://www.cqc.org.uk/about-us/fundamental-standards
Call to action
Read, ingest, analyse and work through the guide. It is helpful to self-evaluate and that’s fundamental to this work; learning and standardising practice to fit your environment and the bespoke children and young adults that you care for.
We hope that this blog provokes you to examine further; pick up the Grab and Go Guide to develop and support your service, to deliver bespoke palliative and at end of life care for your children and young adults.
Contact
Holly Smith HollySmith@stoswaldsuk.org Acting Matron – Children & Young Adults Service St Oswald’s Hospice Ltd, Regent Avenue, Gosforth, Newcastle upon Tyne, NE3 1EE
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Professor Erica Borgstrom erica.borgstrom@open.ac.uk 1 Faculty of Wellbeing, Education and Language Studies, The Open University, Walton Hall, Milton Keynes MK7 6AA, UK
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