In this blog post I am going to share the approach that we have taken to transforming secondary care outpatient (also known as ‘planned care’) follow-up in our local health system.
We are experiencing increasing demands on our services, with an aging population often presenting with complex co-morbidities and the impact from the wider determinants of health. One third of our local population are living in the 20% most deprived areas in the country and there is a recognition that many people who are living in poverty develop and experience negative impacts from multiple health problems 10–15 years earlier than people in more affluent areas. https://www.kingsfund.org.uk/projects/time-think-differently/trends-disease-and-disability-long-term-conditions-multi-morbidity
Specific challenges that our local system is experiencing with delivering responsive and valued outpatient services are:
- Increasing first appointment to follow-up rates.
- Delay = reduced outcomes and poor experience.
- Challenges achieving the 18/52 week ‘Referral to Treatment’ times
- Workforce burn-out, evidenced by increased sickness/absence, challenges in recruiting into some specialities. Increasing locum and agency spend to address the unavailability of our own workforce capacity to support the required out-patient clinics
- Limited space to hold traditional clinics
- Financial challenges to deliver safe and effective services
Added to these pressures NHS England’s Long Term Plan states an expectation that face to face out-patient follow-up is reduced by a third in the next five years
Participatory co-design with patients is not a new concept, however most are carried out for single health conditions. We recognised that there were more people in our local populating living with two or more long-term health conditions than single health conditions and that secondary care services in particular traditionally silo their offers. We boldly (some may say) decided to work with four secondary care specialities (that we as a project team referred to as the Fantastic Four): Rheumatology, Diabetes, Respiratory and Neurology to hold a participatory co-design event inviting up to 200 patients (50 per speciality) and 25 specialist team staff (5 per speciality team). Why this Fantastic Four? you may ask, when we had a whole suite of secondary care specialist teams to chose from…….. we simply went where the energy was. (See a previous blog explaining why following the right energy is important https://wordpress.com/block-editor/post/changeunlockedtoday.wordpress.com/211 )
Everett Rogers developed his now famous ‘diffusion of innovation’ curve in 1962. His model has been built on over the years by several thinkers. The version depicted in the accompanying graphic demonstrates that depending on where people are in terms of their comfort with the innovation, the messaging required to engage them will be different. We considered that our particular ‘Fantastic Four’ (by and large) were on the far left of the change curve and were keen to test out new ways of working and it was their support and evidence from the work that would best persuade others in the system to adopt the learning.
Starting from a position that ‘Quality and Value are only ever viewed through the lens of the customer’ we, the small project group, had always planned to engage those people with lived-experience of our outpatient follow-up to co-design a better way, but as so often experienced in the NHS, funding to be able to do this was a barrier. We were challenged with identifying a defined saving that would be generated and delivered as a direct response to the co-design. Now this was a difficult thing to do! We could easily pluck random pound signs out of the air with some reasonably accurate numbers aligned to the mass of patient data that the NHS captures, professing to be able to save £X as a result of any proposed intervention/outcome from the co-design, but wasn’t that assuming that we already knew and had decided on what we were going to do even before we asked people? Oh hang on…………. yeah, now that sounds familiar. So no, we decided against that. Here is where the wonderful South West Academic Health Science Network (AHSN) https://www.swahsn.com stepped into the equation by offering to work with us and fund an initial co-design day. The South West AHSN works to improve the health and patient experience of people in the South West by supporting and accelerating innovation and quality improvement, so our project was a perfect collaboration partnership. This sponsorship enabled us to apply for Health Foundation Q Exchange funding to support the teams testing the outputs of the day, meaning that we did not have to spend precious energy and time writing a spurious business case to seek permission from a series of groups and assurance panels. You can look at our winning Q Exchange proposal here: https://q.health.org.uk/idea/2019/redesigning-outpatients-through-inclusive-participatory-co-design/
We used a validated tool to identify the level of knowledge, skills and confidence to self-manage their conditions (The Patient Activation Measure also known as PAM) and stratified the timings of the attendance on the day to those who had high levels of activation in the morning and those with lower levels in the afternoon, with a shared lunchtime get together for all. The day was a triumph, interspersed with a few grumbles about the dodgy, creaking toilets at the venue and a lack of parking.
A variety of different ideas, suggestions and proposals were made by those who attended and the outputs were shared with all who were interested. Two major pieces of work were then embarked upon in the first instance, both being a different supported self-management offer, designed to improve individual’s health and care outcomes and enabling unnecessary face to face clinical contacts to be reduced.
Firstly, people told us that it is all very well having apps and websites etc to support them in better managing their health conditions, but if you were living with several different conditions (some of the people who attended were living with 6 or more), having several different apps that didn’t ‘talk to each other’ was a burden not a help. So the first piece of work was a single app that connects up all of their relevant health conditions for people living with a number of Long-Term Health Conditions. The resulting CONNECTPlus Multiple Conditions App is a collaboration between those who attended the co-design event, clinical teams and the talented digital folk who work in Health & Care Innovations (HCI). https://hci.digital/products/connectplus-app/
If you are interested in learning more about how CONNECTPlus can help you to support those you work with to better self-manage their multiple long-term conditions in a single place while enabling you to remove unnecessary appointments, have a chat with Dr Matt Halkes (he is very approachable) email: firstname.lastname@example.org
The second exciting piece of work is just about to be launched in January 2021. Prior to the co-design event we undertook several literature searches and reviews with the view to identify the best evidence based interventions or activities that can support people to better self manage their health condition (optimising their levels of activation). We did this for each of the four specialties and also identified generic interventions and actions. We know from the evidence that those people living with lower levels of activation have poorer health outcomes and cost the local health and care economy significantly more each year than their more activated peers; so we were keen to explore how we could better support those who have lower levels of knowledge, skills and confidence to self-care. Those impactful actions/interventions identified from the literature searches were written on cards and placed on the tables, as discussion prompts, should the conversation run dry.
One of the interventions that the evidence identified was that a peer health coach offer was valuable for some people (the literature mainly identified this being helpful for people living with Chronic Obstructive Pulmonary Disease and also those with Mental Health concerns). We were surprised when both the morning and afternoon groups thought that this was an idea worth developing locally with a number of people in the morning suggesting that they would like to volunteer their time for this purpose and those in the afternoon saying that they would really value having a structured conversation with a peer who could offer them more time and at a slower pace than their current health care teams could. So that got us thinking and beavering away in the background (interrupted slightly by the Covid-19 pandemic) to develop a skeleton framework that was of value, measurable and safe from the perspective of all involved; the clinical teams, the system, the volunteer peer health and wellbeing coach and the person who was receiving the offer (oh and lets not forget the bean counters!).
We are recruiting a co-ordinator role in January 2021. It turns out that there is little to no published evidence in the literature that looks to improve people’s holistic levels of activation (across multiple Long-Term health conditions) through peer to peer health coaching and so we are excited to be working with the Torbay Medical Research Fund and Plymouth University to undertake a feasibility, randomised control trial, from which we shall be able to synthesise and share the learning. So just to whet your appetite for things to come, here is a short recruitment video for Volunteer Peer Health and Wellbeing Coaches that we have been developing, just to give you a taster.
The value of undertaking a participatory co-design event across multiple specialties, has been multifaceted, not least the powerful recognition from the clinical teams that different approaches and different paces of change are needed for people living with different levels of activation.
The atmosphere was palpably different between the morning and the afternoon, with many of the clinical teams being shocked at the difference. For those participants who attended in the afternoon, the mood was much flatter, with a sense of being overwhelmed and struggling with their lives…….. however after about an hour of off-loading a remarkable change occurred. The conversations naturally without prompting changed in their focus from what was the matter with them to what matters to them, both at the time and into the future. The phrases most commonly heard were of relief that “I feel listened to”, “I have a voice“, “today, I have met others who ‘get it” and “I no longer feel alone with all of this” and the ideas generated for a better future started to flow.
If we are truly going to create a health and care service fit for the future we need to co-design and co-produce it with those who use our services. Sometimes the outcomes will not be what we want to hear and will force us to think differently and sometimes the ideas generated will be potentially transformational as in the CONNECTPlus app and the volunteer health and wellbeing coach role but whatever the outcomes, quality and value are only ever defined by the customer, so lets create future services, full of quality and value in collaboration with them, who knows where that will take us.