Not just a plan?

The current focus in British social policy on outcomes or results has been informed by the work of Mark Friedman in the United States (Friedman, 2005). He described his experience of applying a “results-based” or “outcomes-based” approach to planning services for children and young people (CYP) and families, and called this “outcomes-based accountability” (OBA). OBA is a conceptual approach to planning services and assessing their performance that focuses attention on results or outcomes that the services are intended to achieve.

It is seen as much more than a tool for planning effective services. It can become a way of securing strategic and cultural change: moving organisations away from a focus on efficiency and process as the arbiters of value in their service, and towards making better outcomes the primary purpose of their organisation and its employees. He emphasised the importance of the use of clear language, the collection and use of relevant data, and the involvement of stakeholders, including service users and the wider community, in achieving better outcomes. His thinking was influential in determining the outcomes framework that underpins Making Every Young Child with Diabetes Matter (Department of Health Diabetes Policy Team, 2007) and the 2004 Children Act (UK Government, 2004).

While reading his book, it struck me that adopting an OBA approach could be a good way forward for improving outcomes in CYP’s diabetes care and, with this in mind, I attended the biannual National Children and Young People’s Diabetes Network meeting on 3 December 2014, generously hosted by Diabetes UK in London.

There was representation from: clinical leads; paediatric network coordinators; parents from the Families with Diabetes National Network (FWDNN), representing the 10 Regional CYP Diabetes Networks in England; a representative from the Brecon Group in Wales and Diabetes UK. On this occasion, we decided to have a facilitated meeting where we would all have an opportunity to make a plan for our ongoing working partnership and to reflect on the work of the National Paediatric Diabetes Network that had taken place since its conception in 2010, and which was set out in the National Paediatric Diabetes Service Improvement Delivery Plan 2013-2018 (NHS Diabetes, 2013). The attendees worked together in small tabletop groups and subsequently shared their ideas with everyone. This allowed each person to contribute to the period of reflection and the subsequent forward planning for the work of our National CYP Diabetes Network.

The most striking observation on this day was the real sense of total commitment by everyone to work together across England and Wales to achieve the best outcomes for the CYP and their families that live with diabetes. Initially, participants talked about their concerns about the overall governance and sustainability of our network structure and its function, especially in light of the current reorganisation of our National Health Service and a forthcoming general election in 2015. Without too much more deliberation on these issues, however, the group very quickly went on to articulate its desire to be able to deliver a “world-class” CYP diabetes service.

When describing what such a service would look like and how it would operate, the following descriptors were among those that were used: working together with a shared philosophy of practice; evidence based; standardised and consistent care; creating our own “brand” image associated with excellence; enhancing the service-user/provider/commissioner interfaces; inclusive of all partners; united in vision and strategic direction; able to harmonise priorities, adopt innovative practice and develop quality standards centrally, but ensure locally delivered services; use data to drive improved outcomes that mattered most to the CYP and their families; and having increasing confidence to challenge suboptimal clinical practice both professionally and by patient/parent groups. The list went on and on, such was the enthusiasm. People’s aspirations could be seen as real possibilities.

Skilfully, our facilitator worked with us to distil all our thoughts and to capture them concisely so that they could be used in the development of a framework for a new and greatly improved CYP Diabetes Service Improvement Plan 2015–2020, which we knew should have a greater focus on improved outcomes, rather than just care processes.

The “business” world is often held up as the way we should model our behaviour and, indeed, during the discussions in our network meeting, the work we were doing was very often thought of in business terms. A successful business starts with the end points of what it is trying to achieve and then works backwards by looking at the means to get where it wants to be. In healthcare, this is not historically how we have developed our delivery strategies. Relatively easily, there is often absolute agreement reached between all parties on the end point(s); however, there can commonly exist complete disagreement about the means to reach them, especially in times of financial austerity. Despite this being so, one of our first priorities will be for our diabetes networked community to agree collectively the end points that are important to our families first and foremost, and then to engage in a healthy debate about the means to achieve them.

Let’s look at ends and means in more detail for a moment. In my mind, results and indicators are about the ends or outcomes we want for CYP and their families living with diabetes, and strategies and performance measures are about the means to achieve these improved outcomes. However, we know that people come to the discussion table from different disciplines and walks of life, and the way in which they talk about ends, means, results, indicators, end points, goals, improvement programmes, strategies, clinical services, outcomes, inputs, outputs and performance measures, to name but a few terms used in the world of quality improvement (QI), means that no one really knows what the other person is saying, but usually politely pretends that they do! As a consequence, the work together can be slow, frustrating and become generally ineffective. This is why, in the past, efforts by many people have been described as big paper exercises and a waste of time.

In order to mitigate against this happening to our work in the future, we could start our CYP Diabetes Service Improvement Plan refresh by taking the time to develop a common understanding of what we are aiming to achieve and how we plan to set about reaching our desired end points. This should be described using a common language that is used consistently and written in plain English for all readers to understand. By agreeing on the terminology to be used and listing words alongside their intended meaning, hopefully we will avoid the risk of getting stuck in the “all talk and no action” circles that in the past have left countless numbers of participants in QI disillusioned. Our CYP Diabetes Improvement Plan should also have a layout that is simple to follow using a common-sense approach, be printed on a minimum amount of paper, and, above all, be useful to its readers and help them to bring about a change in attitude and behaviour in both themselves and in others.

So, it is not just a plan that we need. It is an action plan and one that, in the simplest terms, should allow us to answer the following three questions. How much did we do? How well did we do it? Is anyone better off as a result? We need our CYP and their families to help us answer the last of these questions. In our CYP Diabetes Network we have wholeheartedly embraced the opportunity of working closely with these families. The formation of the FWDNN has allowed robust discussions to take place between representative families and professionals alike, and, having adopted a “together we achieve more” work ethic, we feel that we are truly working with the sole purpose of improving outcomes and experience of care for our CYP and families living with diabetes across the country. Already the FWDNN has done amazing work that will be used to form the basis of our work together in the future. A recent survey looked at outcomes that are deemed important to the CYP and families living with diabetes, yielding some surprising results. It is our intention to publish their work in future issues of the Journal. On behalf of my professional colleagues, I would like to thank them all for their time and effort.