'I am so passionate that the research we carry out at Birmingham ends up back with families as soon as possible'

Could you tell me the story of your research and practice?

During the course of my undergraduate psychology degree at the University of Birmingham I was taught by one academic in particular, Professor Chris Oliver, in a module about children and adults with severe intellectual disability. I have personal connections to learning disability and neurodevelopmental conditions and I found Professor Oliver's work incredibly interesting both from a personal point of view and an applied point of view. I took an opportunity to volunteer in his research team one summer and during that time started to talk about PhDs with him.

I hadn't necessarily thought about research as a career route before but ended up being awarded a funded PhD looking at self-injurious behaviour in children and adults who are autistic. That was probably one of the most influential periods of my life in terms of meeting a huge number of families whose children were in crisis. The children were showing behaviours that were really challenging. 

Their families were struggling with issues around service breakdown and placement at schools, as well as the impacts on their own and their children's wellbeing. We were also able to work with families to help them get some answers to some of the questions they had and to look at new interventions. This work had a profound impact on me. It made me think about clinical practice and the ways we can affect change in the real world. 

After my PhD I trained to be a clinical psychologist – while I did enjoy that training my, overriding sense during the three years was that the impacts you can make for one individual or one family are really big, but sometimes what you need is service level and structural change. That repositioned me in terms of where I wanted to go and I came out of that period thinking I definitely wanted to be an academic. I wanted to do research with families and for families, that can shift policy and practice.

Given your connection to learning disabilities, what is it like for you personally doing this kind of work?

When it was looking like I was going to do a PhD I remember thinking, this is going to be too difficult because I'm going to be working alongside families that have had similar experiences. I was aware I could possibly find the emotional impact too difficult but actually that hasn't been my experience. The more you meet with collaborators and colleagues working in the same field, the more you find other people who have a personal connection and that has been an incredible motivator.

There is a real deep personal motivation for me; to carry out high-quality science and ensure the data is in the hands of families who need it. One of my big frustrations is around the poor measurement of research constructs in people with a learning disability and the absence of people with learning disability from core research studies. I think our expectations should be at least as high for research that is done in people with learning disabilities as it is for the general population. There is also a failure to put the good quality research that is being done back into the hands of stakeholders and people with lived experience so that it can be used to advocate for change.

I am so passionate that the research that we carry out at Birmingham ends up back with families as soon as possible. There's often a 17-year lag between research and the impacts on policy and practice. That is unacceptable in my mind.

How did your work led to your involvement with the Cerebra network?

With time I realised there was a theme of certain groups of children and certain clinical problems that were really under-researched – and often the children who have these problems have multiple diagnoses. They may have complex or rare conditions where they might have dual diagnoses; they might be autistic and have a learning disability, they might have a rare genetic syndrome that confers a learning disability or autism or ADHD. Research tends to focus on single conditions in homogenous samples and that means children with multiple diagnoses or rare conditions often get excluded.

Cerebra is a charity and they fund research including the work my predecessor Professor Chris Oliver did for a number of years to specifically research children with multiple complex and rare conditions. Just before 2020, Chris was moving towards retirement and myself, Jo Moss [University of Surrey], Jane Waite [Aston University] and Hayley Crawford [Warwick Medical School] really wanted to continue the work he'd started. We approached Cererba and asked if they would like to fund us. So we founded this cross-institute network whose sole goal was to improve research that underpins assessment and intervention for children with multiple, complex, and rare conditions.

As a network across Birmingham, Surrey, Aston and Warwick, we focus on mental health, co-occurring neurodevelopmental conditions, for example, autism in the context of a syndrome, sleep problems, behaviour problems, pain, and health conditions. These are the areas where families want and need to know more, and these are also areas where if we are able to gain traction on them we have the potential to make really significant impacts on wellbeing.

I have a real desire to train and support the next generation of researchers. I feel that I benefited hugely from being at Birmingham and being mentored, so across the Cerebra Network, and in my own research lab, we have a whole host of placement students, master's students, clinical doctorate students, PhD students, alongside my postdoctoral research staff. There's a real focus on skills development and training the next generation so that they are equipped to do research with these often excluded and neglected populations.

What was the impact of the Covid pandemic on your work?

Pre-Covid one of the main problems was that often methods that were being used for children with learning disability lacked precision. One of the things each of us has done in the workstreams that we lead with Cerebra is to increase the precision of measurement. In Surrey, they do work around social cognition, and in Birmingham, we work particularly around sleep and behaviour. Lots of the methods we use require us to make adaptations with children in person and often involve longer periods of assessment. When Covid hit, we weren't prepared for the fact that we wouldn't be able to go out into families' homes or bring children back into the lab to do testing and assessment.

Compounding this was the data that was emerging and is now well established that mortality rates from Covid for children and adults with learning disabilities were around eight times higher than the general population. We had methods we could no longer use and a population that was at significantly greater risk from Covid. Even when we started to improve risk assessments to bring typically-developing adults back into the labs we couldn't safely do that for the children that we wanted to work with.

Another component was that the families that we worked with had additional burdens because lots of the support services that they relied on were stripped away during the pandemic. On top of coping with homeschooling, our families were coping with services such as occupational therapy, physiotherapy, and speech and language therapy being withdrawn. We pivoted to a lot of remote methods and ended up doing some really exciting work making methods that are accessible and interactive and can be done online with children and families. 

But even in that context, we had to validate those methods and then cope with the fact that families were exhausted and didn't have the same time and resources to take part in research. It's been a real challenge. And I would say we're still feeling the effects of that both in terms of recruitment numbers and fatigue as well as the wellbeing effects for families whose children who were most in need of services.

What changes would you most like to see for children with learning disabilities and their families?

I think where we are moving towards, but there's still some progress to be made, is in translation. We're getting to a point where there are a lot more inclusive measures, various private funders now appreciate that research with these populations might take longer and might cost more. I think there's a greater emphasis on participant and patient involvement in the development of accessible research. One of the challenges for me is looking at how we convert that to efficacy trials within the NHS, in systems or in social care and systems that are themselves struggling with funding.

One of the things we've done in Birmingham, which is slightly separate from the Cerebra Network, is to work with our local community healthcare trusts to deliver proactive interventions that are risk-informed. We've done a lot of work on models for predicting outcomes for children. 

One of the things we have to do as researchers is think in a way that is really pragmatic about what is actually possible within the NHS. Yes, we might think that all children should be offered all of these interventions, but the reality is that's never going to happen because of funding. 

The route we've taken at Birmingham is to develop interventions that are risk-informed where you can look at the characteristics a child or a family holds to then stratify them into groups, whether it's higher or lower degrees of risk, and then deliver interventions on a sliding scale – for example, you might give more intensive interventions to the higher-risk groups, while with some children we might take a 'watch and wait longer' approach. We've been doing that with Birmingham Community Health Care Foundation Trust.

The next step for our work, and others' work, is about fully powered trials. I think the stage right now is thinking about what does it look like to run trials effectively and efficiently? That might be multisite, it might involve international collaboration so that we can develop a well-powered evidence base about what works for people with learning disability. It might also be looking at what works at an individual level in terms of intervention delivery, and it might also be what works at a systems level in terms of how services are structured.

In the course of your work is there anything you've come across that has surprised you?

One of the things we do a lot of is sleep research. We've been using wearable sleep trackers to phenotype the sleep of children with rare neurogenetic conditions. While we've been doing that we've also collected data on their parents' sleep; looking at the ways in which parents respond to their infants or children as they get up in the night as they struggle to settle. 

I'm a mum, and I've had children up in the night, been through the newborn phase, and I know the level of impact that has on a person, and one of the most striking things for me has been the level of resilience in family carers. We work with families where they get barely a handful of hours of uninterrupted sleep – this could be across decades of the young people living with their parents and carers. 

The level of resilience is on a personal level, but also when you look at a population level and you run the analyses you see that children's lack of sleep is often not the sole predictor of parental wellbeing. They seem to be able to be resilient in an awful lot of ways and what we're increasingly finding is that there are cognitive aspects of parents coping that seem to better predict their wellbeing outcomes more than the sheer volume of sleep that they get or the number of interruptions that they have. So I think I think parental resilience is probably the thing that has been most striking to me.

You've already mentioned some of your hopes for the future but are there any other questions in this area that you'd love to be involved in answering?

Yes, definitely in two areas. I'm really interested in what the cascading effects of improving children's sleep may be. Sleep has been deprioritised in health for a very long time. I think in the last few decades there's been this growing awareness that sleep might be foundational to everything we're all doing. But what's lagged behind is an understanding of sleep in children with these rare and complex neurodevelopmental conditions. 

We're now at a point where we can measure sleep really effectively but what we don't understand is what could be the potential gains if we could improve sleep? If we prioritised sleep interventions for these children early on, what kinds of gains might we see in wellbeing? What kinds of gains might be seen in cognition? What kinds of gains might we see in mental health and in behaviour? That is a key question in order to build the evidence base for more productive sleep interventions.

One of the burning questions for me at a services and systems level is what does it look like to run services that are efficient and risk-informed? The idea of proactive, early intervention, particularly for some of those distal behaviours that can be very difficult for families and carers when young people hit adolescence or early adulthood. 

What would it look like to draw down resources away from the sharp end of reactive interventions and into something that looks much more proactive and is informed by the kind of rigorous robust statistical models of risk? I think we do that really well in other aspects of the care health system – if you look at things like cancer screening, we have these really well evidence-based models that look at people's individual risks and we titrate the level of screening or the level of intervention we offer on the basis of that, but we don't do that for psychosocial interventions. 

This is about behavioural outcomes or wellbeing outcomes that have a cost both to the NHS and Social Care system and on a human level they cost enormously. I think we need to take those kinds of models of proactive intervention and screening from other aspects of physical health care and drag them into learning disabilities and into mental health interventions.