There is a ‘major lack of consistency’ in service provision for people with epilepsy and a learning disability in England, according to new research published in BJPsych Open.
The study, which included nine Integrated Care Systems (ICSs), assessed care provision for adults with a learning disability and epilepsy across the largest NHS England region – the Midlands – which has a population of approximately 11 million.
It has highlighted how most Integrated Care Systems are often unable to accurately identify the number of people with intellectual disability and epilepsy in their regions, hindering effective service planning, and how many are struggling to recruit and retain staff with the appropriate skills and knowledge to support this population.
Almost a quarter (22%) of people with a learning disability have epilepsy, and the risk of death for people with a learning disability and epilepsy is up to 10 times higher than for those with a learning disability who do not have epilepsy.
Despite this increased risk, previous research has shown that people with a learning disability and epilepsy are often subject to fragmented care and poor risk management. The Step Together project aimed to address this gap by proposing an evidence-based and validated model to examine and provide best practice for managing epilepsy in people with learning disabilities.
The Step Together toolkit can be used by services to understand and evaluate the care they provide to adults with epilepsy and a learning disability. It was first trialled using Clive Treacey’s independent review. Clive Treacey died at an assessment and treatment unit in Nottingham in 2017 after having an epileptic seizure. An independent inquiry found that Clive’s death was ‘potentially avoidable’, and there were ‘multiple system-wide failures in delivering his care and treatment that together placed him at a higher risk of sudden death.’
In response to the findings of this study, Beverly Dawkins, who undertook the review, said: “The evidence in this paper supports the points we make in the Clive’s review about the inconsistency and lack of capacity across the systems and care staff. There are no surprises in this evidence, but it’s important wide-scale nature is recognised and the Step Together programme clearly supports change.”
Elaine Clarke, Clive’s sister, said: “The report evidence is a very difficult read for me personally. It serves to affirm Clive’s entire lifetime of experiences within services alongside that of his peers. As a family, we cannot put into words how truly proud we are of Clive. He has helped to galvanise a movement of hope to build capable communities for their citizens. He would be chuffed to bits in the knowledge he’s still helping people to this day as he did in life.”
In the study, all 11 of the Integrated Care Systems in the Midlands were invited to self-assess their service using the toolkit. The toolkit is made up of 56 questions covering eight domains: workforce, local planning, key service provision, diversity of provision, care planning, transition, sharing information, and patient and carer participation.
Each question response is assigned a score, which is used to calculate a percentage score overall. These scores are then categorised into red (0-29.9%), amber (30-69.9%) and green (70-100%). Red indicates that there is a need for significant improvement across many areas, amber indicates a need for improvement in some areas and green indicates that most minimum requirements are being exceeded and services are generally performing well.
The toolkit was completed fully by nine of the 11 ICSs in the Midlands. Across all eight domains, the overall score was 44.2%, putting the Midlands region in the amber category, where many services are adequate but there is scope for improvement in many areas.
However, there was a significant range in epilepsy care, with the lowest score being just 23.8% (red) and the highest score being 76.2% (green). Local planning and care planning scored particularly low across the nine ICSs (an average of 31.1% and 31.4% respectively), while information sharing scored the highest (an average of 55.2%).
A concerning finding was that seven of out of the nine ICSs were unable to identify the number of people with intellectual disability and epilepsy in their regions. The authors say NHS digital healthcare records should have a ‘reasonable adjustment flag’ to identify those with a learning disability and this lack of basic data suggests it would be difficult to comprehend the challenges and thus resource the concerns.
In addition, the research highlighted the widespread difficulty in recruiting and retaining staff with appropriate skills and knowledge to support this population, with eight of the nine ICSs (89%) feeling that it was ‘very difficult’ and 11% feeling it was ‘moderately difficult’.
The transition from children’s to adult’s services also presented a challenge in some ICSs, with four in 10 (44%) disagreeing that their transition arrangements were good, with clear information and transparent policies, provided well in advance of the transition.
Importantly, the study showed that the Step Together toolkit can be used as a catalyst for improvement. The use of the toolkit in the Midlands region has led to a number of improvements over a short period of time, and the authors say it allows for services to be assessed in an easy way that quickly highlights potential improvement options. It can also improve connectivity between teams and services, focus improvement plans on areas of need and increase ownership of improvement processes.
However, the authors highlight that implementation of the toolkit can be challenging as it requires cooperation between many different teams and departments, including social care and, where possible, patient engagement. This can be difficult in a healthcare system that is already overstretched.
Nevertheless, the authors conclude the toolkit provides a consistent approach to comparing regions or revisiting the same region at a different point in time, and it can be used to highlight key gaps in the ICS that could otherwise leave a vulnerable population at risk.
“People with epilepsy and intellectual disability are at a significantly higher risk of mortality and reduced quality of life. They require ongoing personalised, holistic care. Improvements in care are needed to reduce the high numbers of avoidable deaths and hospital admissions in this group,” the authors conclude.
Tom Shillito, Health improvement & research manager at Epilepsy Action, said the the research marks the “first step to make a change for the better, and he is encouraged that more ICSs are starting to evaluate their practice.
“Since its launch, another ICS has completed the Step Together toolkit, and seven others have kickstarted the process. For us at Epilepsy Action, it would be fantastic to see every ICS in England go through this process and commit to improving levels of care for people with epilepsy and a learning disability,” he said.
