The final report from the independent ADHD taskforce has called for systemic changes in care after, earlier in the year, saying that ICBs should do more. In May, a King’s Fund report said more accurate and comprehensive data on ADHD was needed to improve services. So, it is unsurprising that a live data SEND dashboard at NHS Nottingham and Nottinghamshire ICB is attracting attention. The dashboard incorporates data from across the system to help teams spot trends and measure the impact of SEND improvement work. Simon Frampton and George Thomas from the System Analytics Intelligence Unit (SAIU) at the ICB tell Julie Griffiths about the dashboard.
Julie Griffiths (JG): How did the special educational needs and disabilities (SEND) dashboard come about and when did it start?
Simon Frampton (SF): In 2023, an inspection of the system’s SEND offer for children and young people highlighted that we weren’t using data and information effectively.
We had lots of information, but in individual pockets – health, local authority, education and so on. So, towards the end of 2023, there were conversations across the system about creating a useful dataset that could become tangible information for the system to use. We were in a unique position to say, ‘If you give us all your data, we can merge it and give you a system-level view.’
We hold a view of data with a Section 251, which is a national sign-off for us to merge data sets and link into national data. We’ve got patient data for pretty much every person in Nottinghamshire – though, I can’t see individual patient details – and we could link that with the list of SEND children given by the local authority.
Now, we have a comprehensive and holistic view of our children and young people with SEND in the county.
JG: Was it difficult to persuade organisations to share their data for the dashboard?
SF: The inspection gave us the door in, and people were happy to do it because they could see the benefits. It’s not about performance managing; it’s about pulling data into the right place to understand where we’re delivering good services and where we may have opportunities to improve.
We already do this work on behalf of the system in other areas anyway, so it wasn’t completely new. We already had some information-sharing agreements in place with these organisations, which was helpful as confirmation of how secure the systems are.
Then it’s just about putting the right information-sharing agreements in place with those local authorities or providers to make sure it’s legal and above board from an information governance perspective.
JG: How did you make it work when organisations have different systems that don’t necessarily link together? And how do you keep the data up to date?
SF: I always say that we can take data in pretty much any form they want apart from carrier pigeon. It’s a flippant comment but whether you email it, it’s automatic transfer, or an encrypted dataset, our data management team can link it to the data at our end.
We get direct feeds from GP systems on a daily basis, running automatically in the background. Some of the monthly ones are fed in automatically and some come in on a spreadsheet, but they’re all set processes to make sure it happens.
JG: What data is included in the dashboard?
George Thomas (GT): We’ve got those with an Education, Health and Care Plan (EHCP) – or waiting for an EHCP assessment – and those who are waiting for annual review. We’ve got attainment information – such as achieving level 8 attainment – and absences and suspensions for SEND children, and other education metrics such as mediations and tribunals.
From the feed that we get from the local authority, we can look at demographics too – health inequalities, ethnicity, and deprivation.
For health, we’ve got therapy waiting times and neurodevelopmental waiting times and prescriptions.
We also have some survey information. Quantitative data can tell you so much, but the qualitative surveys can tell you the experiences of those children.
JG: Which frontline professionals might look at it? And who else would use the dashboard and for what purpose?
SF: We have two different ways of using data – for direct care and to understand commissioning and system needs.
In primary care, for example, a GP could search for the children in their practice who have an EHCP, have asthma and haven’t had an asthma check in the last 12 months.
It would then show them a list of patients to prioritise for review.
The second use is enabling us to be really targeted and efficient with our services. We can look at the data to ask: where are our challenges and where do we have opportunities to improve our services to better the outcomes for this population?
From a commissioning perspective, you might use it to understand if we’re putting the right services in place for SEND children. If the data shows a cohort of patients who need a particular service are all in a specific geographical area, you can focus on where we’ve got the need.
JG: Can you give an example of how the dashboard has changed commissioning plans?
SF: Yes, sleep services for SEND children. They used it to identify challenges in a way we couldn’t before.
Instead of a generic service across the county, we can now identify where those people are. We can look at our data and go, ‘OK, where do we want this service? And are there any other comorbidities these children have, such as asthma or obesity?’
GT: Yes, that was last year. First, it was understanding how much melatonin has been prescribed and how that had changed historically. When commissioners saw that it had increased, it was about bringing in colleagues from local authorities to set up a dedicated sleep service in the community based on the dashboard data.
JG: Do you have any other examples of how the dashboard has changed decision-making?
SF: It’s challenging our perceptions, I think. And we can see where interventions or changes are working.
For example, you’d expect children with SEND to potentially have higher A&E attendance than non-SEND children because of the challenges they might have. But when we looked at the data, we could see that, yes, they used to, but at the moment it’s actually the other way around. So, the services we’re putting in place as a system are obviously making a difference.
It’s always difficult to say, yes, it was definitely this particular change, but the data can help you understand what happened after you put in an intervention on, say, 1 September.
JG: The Health Select Committee has called for a change in approach to dealing with SEND children because of long waiting lists for assessment. Could the dashboard help address that?
GT: The dashboard can only give information, not necessarily solve the problem – that’s down to a lot of other things. But at least it makes the information readily available for commissioners and clinicians to see. They can see where there are waits and how long people are waiting. It also highlights other services that could help improve their experience while they are waiting, such as waiting well schemes.
SF: It makes it visible in a way it wasn’t before.
JG: How much did it cost to develop this dashboard? Did you need to invest money in training people to use it, for example?
SF: It’s not easy to put a cost on it because this is what we do across the system from a data and information perspective. We’ve added it to our normal working fabric, I suppose.
The dashboards are designed to be intuitive and not need any training. You have one screen with an interactive dashboard and you apply filters – for example, age range, ethnicity or region. If it’s not on there, we have a data request process where someone can ask us to pull the data out.
For those who are less confident or not as IT-literate, we have AI videos showing people how to navigate the portal. But the dashboard is very easy to use.
GT: Towards the beginning of the development process, we talked a lot with commissioners and mapped out what it would look like. We made sure that it was for them to use, not for analysts.
JG: What about the future? How are you planning to develop it?
SF: All of our dashboards are continually evolving to make sure they’re relevant.
Over the next couple of years, we’ll start to see children who are now 16, 17, 18 become adults and we’ll be able to track them in a way that we’ve never been able to before. It gives us the ability to understand what happens as our service offer changes from children to adult services.
It’s difficult to hypothesise because we don’t know what the data’s going to show us yet. But, for example, we’ll be able to see that our 16-18 year olds have this many contacts with A&E or their GP and whether that changes when they’re no longer in that CYP world. Are we starting to see that they don’t engage with their GP anymore, but have more A&E attendances?
And we’ll be able to add a SEND filter to other areas such as mental health or urgent care for our adults. That’s not there at the moment because we’ve not gone through that, but we’ll be able to do that.
JG: Has there been a lot of interest in the SEND dashboard from outside Nottingham and Nottinghamshire?
GT: There’s a lot of interest to copy the dashboard and basically do the same in their systems to improve services for children.
SF: You can’t just lift and plug your own data into it because it doesn’t quite work like that. But they can adapt the principles of how we’re doing it and get their own versions.
We’ve been linked into a lot of the national groups who are trying to understand how to best promote data use in this cohort of the population.
JG: Have you got any tips for those starting out on that journey?
SF: Don’t be told it can’t be done. The first part of our journey was a particularly poor review by the CQC, which actually shows everyone that it’s possible and removes the idea that it’s impossible.
Simon Frampton is head of quality, performance and insights and George Thomas is children’s senior analyst at the System Analytics Intelligence Unit (SAIU) based at NHS Nottingham and Nottinghamshire ICB.
