Colin loves scuba diving. He had just returned from a recent holiday in the Red Sea when he suffered a stroke. While he is now well recovered, and slowly regaining use of his right arm and hand, he and his wife Jennifer experienced a number of issues they felt needed to be addressed while they were navigating the stroke care pathway. They participated in the process of using person-centred practices to consult with patients. This is a way of taking what is working and not working for individuals, and what is important to them in the future and clustering that information to co-produce change in services. This is having a profound impact on the way health services are being commissioned and delivered in Lancashire. For Colin and Jennifer, this process was more than just sharing their experience. They said it was a real and tangible way of being heard and feeling they could to contribute to improving their and other people’s experiences of the health system. “We were able to talk about our experience of how we were initially dealt with by the medical people. From ringing emergency services to being transported by the paramedics, how long it took, what the initial care was like, the transfer to hospital and the reception we were given on arrival, how long we had to wait to see a specialist…. Colin and Jennifer took part in a day using person-centred practices which offers a way to aggregate the information, with people who use services, to inform strategic commissioning. Lancashire used the principles behind this approach to work with people who have had a stroke, to learn about what is working and what needs to change. This process also provides a way to think about and hear the priorities of people who have experienced the service. People were invited to meet with the commissioning team between 10 – 2pm. and share their experiences about what had worked and not working around the current 6 stage strong pathway:

  • 999 call – ambulance
  • In patient acute care/rehabilitation
  • Residential rehabilitation
  • Community Rehabilitation
  • Living Life

During the day, people talked about their personal experience of that stage, and to shared their stories of what worked and did not work for them. Colin recalls that he was able to give “a decent account” of his experience: “I could see at the time they were looking to try and improve their services. , and get the message across to the medical people what needed to be achieved with stroke patients because in some cases, people were saying they had felt like they were ‘just a piece a meat’. Our experience (or receiving treatment) was that people talk over you as though you’re not there. I could see areas that were so lax, and where professionals seemed to be lacking tuition. I was keen to make sure they learnt something on the initial handling of the patient. ”

The facilitator worked with the group to capture their reflections on cards – green for what had worked, and red for what had not worked. Towards the end of the day, a large display had been created showing the six stages across the top, and underneath, on red and green cards, the collective experience of the groups. The facilitator read all the comments to the whole group. Each table was then asked to reflect on what had worked and not worked, and ask to identify their top three or four priorities for change. These were then shared, to create ten priorities for change for commissioners. This wealth of information and specific priorities has culminated in a comprehensive list of what needs to be carefully considered in the future when co-designing supports for people who have had a stroke. The information clearly demonstrates that there are aspects along the pathway that work well, but there is strong evidence to suggest that there is much room for improvement. The priority list ranges from:

  • Immediate scanning when entering Accident and Emergency services
  • More sharing of information to explain what is happening throughout the entire pathway
  • More hoists on hospital wards
  • Quicker response to the buzzer system on hospital wards
  • Regular, intensive physiotherapy
  • Better standard and quicker installation of adaptations in the home
  • More dropped kerbs
  • Fine enforcement for people who park in disabled bays

Further workshops have now been organised to ensure that we inform the group of progress based on the principal that “You told us this – we have done this”. Following the original meeting, the following has taken place:

An action plan has been devised based on the priorities identified by the group. This has been continually updated. The action plan has been cross-referenced with the quality markers that are part of the local stroke strategy. Meetings have taken place with staff from Central Lancashire Primary Care Trust to share the information from the day. The Commissioning Team in Central Lancashire have used the information to feed into the Business Case for Transitional Care Pathway, to ensure it continues to be well resourced. The information shared is being used in work with providers, for example, in the the design of residential and domestic rehabilitation services. Work is being carried out to develop Stroke Outcomes Framework (similar to the Dementia Outcomes Framework) and the information shared at the workshop will feed into the framework. The information gathered has now been compared with information gained from Peer Reviews. As part of the work to develop the Stroke Outcome Framework other workshops similar to the Central Lancashire workshop are being planned. Information shared by the group will assist in shaping the role of the newly commissioned Stroke Advisor posts. A meeting with staff from the Lancashire Teaching Hospital has been arranged to address the issues regarding acute care raised by the group. Correspondence has taken place with a local Borough Council and consequent correspondence has taken place with the Highways department to address the issue of drop kerbs. Over time and in a number of different guises, there have been consultation events held that have sought to gain information that can inform commissioners of how services and supports need to look in the future. Whilst there has been an element of success with these events, arguably they have rarely produced actions that have linked and informed other work streams or have resulted in people who use services and supports seeing any significant changes or developments based on their views. However, using person-centred practices enables a focused, structured approach that gets to the nub of issues, often without people at the time necessarily realising it. It allows individuals to tell their story but doesn’t allow for a ‘talking shop’. The process provides a wealth of information that assists in future planning, resulting in improvements and changes to services and supports. Importantly, it enables people to really own the process and feel part of a change movement.