Calderdale and Huddersfield NHS Foundation Trust (CHFT), serves a population of around 440,000 people living across Halifax and Huddersfield; approximately 3,000 of which are patients with a learning disability which is known to a health provider.
In 2021 there were 77 patients with a learning disability on the waiting list – all of whom have now received their planned care.
Evidence shows that people with a learning disability have poorer health and experience greater and persistent healthcare inequalities including premature mortality. The 2021 review, Learning from lives and deaths – people with a learning disability and autistic people (LeDeR), reported disparities in avoidable medical causes of deaths between those with a learning disability and the general population. LeDeR reports have also highlighted that a third of deaths of people with a learning disability were from treatable medical causes.
To help address this gap, senior leadership at CHFT made a commitment to improving the lives of people with a learning disability and have embedded a range of initiatives to ensure equitable access, experience and outcomes for this under-served group.
Dedicated sessions on all aspects of living with a learning disability were delivered to the board and an enhanced task and finish group was established to take forward learning disability priorities within the Trust with support from those with lived experience.
Adopting a data driven approach, the trust developed and implemented a range of tools to identify those with a learning disability, understand their experiences and monitor the difference being made. This included a flagging system within patient records, a learning disabilities data dashboard and a data model offering comparisons against the general population. A deep dive into patient journeys, from point of referral to treatment, was also undertaken as were audits on the reasonable adjustments made by the trust, cancer data and missed appointments. The trust also looked at information on readmissions, length of stay and mortality for people with a learning disability. This enabled them to identify areas for targeted action which included prioritising people with a learning disability who were waiting for surgery. Part of this involved partnership work with a private special needs dental service to restart theatre sessions and increase capacity to reduce the backlog on waiting lists.
The trust has also developed an inpatient standard operating procedure for adults with a learning disability and a pilot outpatient template for children and young people.
Learning disability champions are in place across the trust and easy read training is provided for trust project managers. Makaton sessions are also available to all staff to support communication with patients.
Resources have been developed to raise staff awareness around learning disabilities. These include a mandatory e-learning package for all staff, as well as a leaflet and video which are shared at staff induction. There is also bespoke learning disability training for cancer care navigators and clinical nurse specialists.
The trust’s approach to narrowing healthcare inequalities for people with a learning disability is championed by the trust’s chief executive and chief operating officer and has strong board level support with learning disabilities data now reported to the board monthly. The trust’s matron for learning disabilities leads the work and a health inequalities project manager for learning disabilities has also been recruited.
Brendan Brown, Chief Executive, CHFT said: “It is really important that the care we provide for all of our patients is designed to meet their needs and that we treat people as individuals. It is not acceptable that people with learning disabilities are dying earlier than the general population from treatable conditions.
“By taking a whole trust approach to address the needs of this under-served group we have been able to eliminate the backlog waiting list of people with a learning disability waiting for elective care. We have also improved ‘did not attend’ or ‘was not brought’ rates, reduced the length of stay in hospital, reduced the number of people who are readmitted, and reduced waiting times. Importantly, outcomes for this group of people have also improved. As a result, work satisfaction scores from colleagues have improved and the trust has realised cost savings.
“We continue to work with communities across the area to improve access, experience and outcomes. For us, it’s not about getting the number on our waiting list down; it’s about making real and sustainable changes for the people we support.”
In addition to the work happening to reduce healthcare inequalities for people with a learning disability, the trust has undertaken an analysis of their waiting list data by deprivation and ethnicity; taking action to narrow the gaps identified. Waiting list data was reviewed through an inequalities lens and a shareable Health Inequalities dashboard of this data was created. This enabled data to be examined by priority, specialty, and other delivery factors highlighted areas for concern. The dashboard raised awareness among clinicians of the inequalities experienced by people on the waiting list and supported them to make decisions which contributed to these being reduced. Alongside this, the trust established a health inequalities group, chaired by a non-executive director, to monitor progress on the waiting list inequalities and oversee a broad workplan on addressing inequalities, including:
- reviewing complaints data through an inequalities lens
- a re-emphasised focus on compassionate and culturally competent care
- digital inclusion
- embedding a continuous process for equality impact assessments in service change and delivery
- working with local partners to understand and address the needs of underserved communities including ethnic minority groups
As a result, the trust has seen improvements including waits for priority two ethnic minority patients reducing to 0.2 week less than White patients; in March 2021 ethnic minority patients waited 7.2 weeks longer. Priority 2 patients in deprivation quintiles 1 and 2 also saw significant improvements with patients now waiting 8.1 weeks less than they were in May 2021.
CHFT continues to proactively monitor their waiting list data to ensure a focus on health inequalities is a priority within elective recovery and is looking at inequalities in other metrics such as unplanned admissions and DNAs. By focusing on healthcare inequalities, the trust believes it is possible to both reduce waiting lists and bring down average waiting times.
Going forward, the trust is looking to introduce learning disability care navigators and is undertaking further work to identify more of the local learning disability population, in particular children and young people.
- Strong commitment from the leadership team is required – dedicated project management and admin support is also helpful
- Work collaboratively with staff across your organisation (particularly data and informatics) as well as external partners – having a data sharing agreement has been a key enabler to our work.
- It is important that people understand the ‘why’ behind quality improvement to generate support, passion and enthusiasm.
Using data and evidence is central to helping to narrow healthcare inequalities. The National Healthcare Inequalities Improvement Programme continue to develop tools and resources to support providers to drive interventions and action for improvement for those populations with the poorest access, experiences and outcomes of healthcare. Find out more about the resources.