Coproducing a Dementia Care Programme in Wales
By Ian Dovaston, Senior Improvement Manager, Improvement Cymru
Senior Improvement Manager
This year’s Health Service Journal (HSJ) Patient Safety Congress and Awards take place in Manchester next week and Improvement Cymru has won three of the 10 categories in the poster competition.
We are delighted to have won the category of ‘The patient voice’. The importance of not just including the patient voice, but championing it is a large part of how we work as a team and coproduction is central to the approaches that we take when designing our programmes of work.
What is coproduction?
For those of you unfamiliar to the term coproduction it’s probably worth explaining. Coproduction in its simplest terms is not just about involving people by asking what is important to them and then getting on with the work. Coproduction means involving people at all stages of designing a programme: from sharing initial ideas, to developing documents and plans, then keeping them involved whilst putting those into action and understanding whether they have achieved what we initially set out to do.
You may ask “why would you co-produce a dementia programme for Wales?” The impact of dementia is huge, it can affect every part of a person’s life in different ways, and everyone experiences dementia differently. Therefore, trying to identify which areas of dementia are important to focus on to maximise people’s quality of life, should not be a decision made by one person, or a group of professionals, but also by those who can be impacted by these decisions.
For the dementia care programme this involved engaging with over 1,800 people and identifying over 100 different priorities for improving the experience of people living with dementia. Whilst all were important, we recognised that not all could be achieved at once and working together chose the 20 biggest priorities which now form the Dementia Pathway of Standards. This document focuses on the importance of making dementia care accessible and responsive to people’s needs. It identifies that dementia is a journey and that to navigate this effectively requires great partnerships and relationships.
The journey to coproduction
Of course, developing the Dementia Pathway of Standards was only part of the journey; we then had to develop a plan of how this would create a change in real life. The first step was to separate the standards into different workstream areas and involved setting up dementia programmes within each region to ensure that the work to deliver on the plan started, had momentum and could achieve results.
The workstreams were as follows;
Community Engagement: A workstream focussed on understanding how communities can support people to live independently and the issues that are important to address on a local level. This local work can then inform thinking around national priorities.
Memory Assessment: Getting a dementia diagnosis is a life changing experience for individuals, families, and carers and, as such, services that provide this diagnosis need to ensure that the person is holistically supported throughout this experience.
Dementia Connector: Navigating health and social care systems can be complex and confusing. This workstream is focussing on creating a role to help people living with dementia through their journey from diagnosis to end of life. Their role is to ensure that ‘what matters to you’ is addressed and to help people think about the future.
Hospital Charter: Hospitals are not typically designed with dementia in mind. This means systems, routines and environments can actively cause harm to people living with dementia and we therefore need to take steps to ensure people living with dementia have the best possible outcomes. Taking this into account, a Dementia Friendly Hospital Charter was created and all regions of Wales have signed up to this.
Workforce development: No matter who you are it is important to know a little about dementia as it is likely that in your life you will meet someone with dementia. For our workforce that encounter dementia regularly they will need a higher level of skill in dementia care and this workstream looks to address these issues.
Measurement: How do we know that the changes that are happening within regions are making a difference? This work looks to measure the impact of changes across regions and support the development of data and how it can be used – moving from data to knowledge and knowledge to practice.
Future steps
Whilst we are a few years into this programme there is still much to do. The commitment shown by the citizens of Wales towards progressing this work, whether they have experience of dementia themselves, are a carer or family member, or part of the workforce means that we will continue to improve dementia care into the future.
Visit us at the HSJ Patient Safety Congress
We’re thrilled to be part of the HSJ Patient Safety Congress, where we’ll have the chance to engage with teams and projects leading impactful improvements across the system.
I’ll be giving a 10-minute lightning talk at the Innovation Spotlight Theatre in the Exhibition Hall, and I’d love to share our work with as many of you as possible. Whether you’re from a clinical or non-clinical background, please join me! You can check out the full programme on the HSJ Patient Safety Congress website.
Find out more about the work of Improvement Cymru’s Mental Health programme here.