Sickle Cell - Weeknote #13

28 November - 9 December 2022

Finishing, sharing and reviewing our recommendations

We have finished the first full draft of our report, and our colleagues at the NHS Race and Health Observatory are reviewing it for us, including their Academic Reference Group. In the report, we recommend a second phase of work which focuses on:

• Iterating and testing personalised, digital care plans

• Exploring redesigning sickle cell services

We’ve also commissioned two sickle cell advocates to review our work, because it is really important to us that this work resonates with people with sickle cell. We aim to publish the final version of the report in January.

How to share your thoughts on our work

You can read our working draft here and we welcome all and any feedback for the purpose of informing the final report. To this end, we’re sharing the report as a Google Doc which anybody can leave comments on. If you would like to, this is the last opportunity for people to inform this part of our work, and - as ever - we'd love to hear from you.

Recommendation #1: Personalised, digital care plans

Care plans are already widely used in paper format across the NHS, including by and for people with sickle cell disease. However, our research indicates that the NHS has not yet realised the potential of care plans - paper or digital - during a sickle cell crisis. We observed that there is no clear definition of what a care plan is, not everyone has one, and where they do exist, they are often not followed and dismissed.

We believe that there is value in taking a digital service design approach to care plans to answer questions like these:

• What does a care plan need in order to have authority?

• What will it take to make a clinician take it seriously during a sickle cell crisis?

• How can a care plan account for a clinician’s lack of experience with and awareness of a sickle cell crisis?

Recommendation #2: (Re)designing sickle cell services

We also note that, taken individually, any one intervention may not make a significant difference to the experiences of people with sickle cell, in part because of the complex, systematic, and systemic nature of the problem, and a highly federated and fragmented NHS. Technology alone will not address these issues.

Given this context, we also recommend exploring redesigning the operating model of sickle cell services, and sickle cell service design. We propose starting with personalised, digital care plans as a potential ‘front door’ into sickle cell service transformation.

How will this work be different?

We are acutely aware that interventions like care plans already exist. We are also conscious that sickle cell services work very differently in different parts of the country, and that there are places that are already delivering much better care for people with sickle cell.

For this reason, the next phase of work should focus on understanding why care plans are being dismissed, and what can be done to counter that. We know other people are looking into this too, and we’re keen to work together.

We also need to accept the (uncomfortable!) truth that care plans might not be the answer. That’s why the next phase of work will be focused on testing, rather than rolling them out everywhere. The important thing is that we maintain a commitment to finding what will make a difference.

The next phase of work should also focus on collating information and evidence about and how sickle cell services are currently being delivered across the country, and what we can learn from what is and isn’t working. Then we can start to think about different models of care and how to scale and continue to iterate what works.

Ultimately, the hypothesis that underpins everything we’ve done and propose doing next is that it is the way any technology or intervention is designed and implemented which is fundamental to its potential to make a difference.

A mandate, and a different way of working

We believe that the value this work will bring will largely be in adopting a different way of working. What we mean by that is:

• Deliberately bringing together people with different areas of expertise and skills (like digital expertise, sickle cell expertise, NHS expertise) to work together on solving the problem and shaping the solution

• Using digital ways of working techniques like user research and user-centred service design

• Building in ongoing feedback loops so that we can continue to learn and iterate even once an intervention, change or service is live

We also know that the NHS Race and Health Observatory have the power and mandate to make a change at a national level. In particular, the Observatory has the influence and ability to bring together what is currently a very disjointed and disconnected approach to sickle cell care, to make a meaningful difference for people with sickle cell across the UK.

No-One's Listening

Once again, we'd like to acknowledge the enormous influence that the No-One's Listening report has had on our work. It's how this work came about, and it has provided invaluable insight to guide us.

Thank you

This will be our last weeknote this year, so we’d just like to end by saying thank you to those of you that have followed along with our work, gotten involved and supported us to learn. You can always get in touch with us by emailing [email protected] and [email protected], please don’t hesitate to contact us!

See you in the new year!