New evidence of ethnic inequalities in healthcare among people with learning disabilities - the Health and Care of People with Learning Disabilities dataset 2022/23

As the LeDeR report continues its yearly documenting of the shocking/not shocking health inequalities experienced by people with learning disabilities in England compared to other people, over the course of this year we've seen some attention beginning to be paid to some jaw-dropping health inequalities within the population of people with learning disabilities. In particular, a major review commissioned by the NHS Race and Health Observatory , 'We Deserve Better', has magnified continuing LeDeR reports of grim health inequalities according to the ethnicity of people with learning disabilities. Most stark was the information on median ages of death from any cause - while this was bad enough for white people with learning disabilities (62 years). it was even worse for people with learning disabilities from 'other' ethnic groups (49 years), people from Black, Black British, Caribbean or African ethnic groups (40 years), people from Asian or Asian British ethnic groups (33 years) and people from 'mixed/multiple' ethnic groups (30 years).

Yesterday (7th December 2023) NHS Digital/NHS England published the latest yearly information from over half of GP practices in England about the health of people with learning disabilities, relating to 2022/23. 'The Health and Care of People with Learning Disabilities' is a brilliant source of information that deserves to be much more widely known and I hope is being widely used at both national and local levels. This year for the first time this dataset includes some limited information on ethnicity. While there will hopefully be more information to come in future years, it does provide some information that has been weirdly absent so far.

First, it provides information on the ethnicity of people registered with their GP as a person with learning disabilities, compared to people not registered as a person with learning disabilities (because the dataset is geographically patchy, this is probably the fairest comparison rather than national Census 2021 data). The recording of ethnicity in GP records is better for people with learning disabilities than other people, with ethnicity not recorded for 2.9% of people with learning disabilities compared to 6.3% of people without learning disabilities, and 4.4% of people with learning disabilities compared to 6.5% of people without learning disabilities choosing not to have ethnicity information on their GP record.

Of those people where there was ethnicity information:

• 79.9% of people with learning disabilities compared to 74.8% of people without learning disabilities were from a white ethnic group
• 9.8% of people with learning disabilities compared to 13.4% of people without learning disabilities were from an Asian/Asian British ethnic group
• 5.7% of people with learning disabilities compared to 5.5% of people without learning disabilities were from a Black/African/Caribbean/Black British ethnic group
• 2.9% of people with and without learning disabilities were from a 'mixed/multiple' ethnic group
• 1.7% of people with learning disabilities and 3.5% of people without learning disabilities were from an 'other' ethnic group

These are very broad ethnic categories putting very different communities together, and information from schools which uses more specific ethnic categories (and breaks down information according to whether children have been given labels of Moderate Learning Difficulty, Severe Learning Difficulty or Profound Multiple Learning Difficulty) shows that these specificities really matter (a summary table is available in Appendix 2b of the 'We Deserve Better' report).  But just as we know that the deaths of people with learning disabilities from white ethnic backgrounds are disproportionately likely to be notified to the LeDeR programme, it's highly likely that people with learning disabilities from some communities are less likely to be recorded as such in GP registers. It's also important to say that the 'We Deserve Better' report found that much of the ethnicity coding in GP registers was outdated and unclear, so the accuracy of the findings reported here could be improved.

As well as this, the 'Health and Care' dataset includes information on the percentages of people with learning disabilities getting annual health checks and having a flu vaccine, broken down by these broad ethnic categories.

For annual health checks, overall in 2022/23 71% of people with learning disabilities were recorded by GPs to have had an annual health check in 2022/23. This conceals substantial differences between ethnic groups, where the figures were:

• 74% of people with learning disabilities from a white ethnic group
• 68% of people with learning disabilities from a Black/African/Caribbean/Black British ethnic group
• 68% of people with learning disabilities from an Asian/Asian British ethnic group
• 64% of people with learning disabilities from a 'mixed/multiple' ethnic group
• 62% of people with learning disabilities from an 'other' ethnic group

Worryingly, there were particularly low rates of annual health checks among people with learning disabilities where ethnicity data were missing (48%) or the person had chosen not to have ethnicity information recorded (57%), perhaps showing a certain degree of disengagement on the part of GP practices.

For flu vaccines the differences are even bigger. Overall in 2022/23 56% of people with learning disabilities were recorded by GPs to have had a flu vaccine in 2022/23. This conceals big differences between ethnic groups, where the figures were:

• 61% of people with learning disabilities from a white ethnic group
• 46% of people with learning disabilities from an Asian/Asian British ethnic group
• 41% of people with learning disabilities from a 'mixed/multiple' ethnic group
• 38% of people with learning disabilities from an 'other' ethnic group
• 35% of people with learning disabilities from a Black/African/Caribbean/Black British ethnic group

Worryingly, there were also low rates of flu vaccines among people with learning disabilities where ethnicity data were missing (41%) or the person had chosen not to have ethnicity information recorded (47%).

These ethnic inequalities in rates of flu vaccination for people with learning disabilities mirror the most recent information we have (mid-2022) about COVID-19 vaccinations (see this blogpost for details, using information from OpenSafely). This reported that among 16-64 year-olds with learning disabilities who weren't judged to be 'Clinically Extremely Vulnerable', 73% of people in a white ethnic group had received 3 doses of the COVID-19 vaccine, compared to 53% of people in an 'other' ethnic group, 50% of people in a 'mixed/multiple' ethnic group, 47% of people in a South Asian ethnic group, and 40% of people in a Black ethnic group.

This is one small corner of all the health information that could be broken down according to ethnicity, but it clearly shows big ethnic inequalities in getting something basic (like an annual health check, or a flu vaccine) that everybody with learning disabilities is entitled to. And these vaccines make a big difference. The 'We Deserve Better' report reported that before the COVID-19 pandemic, flu/pneumonia was the most common cause of death among people with learning disabilities from Asian/Asian British groups (17%) and from 'other' ethnic groups (16%), and the second most common cause of death for people from Black/Black British/Caribbean/African ethnic groups (16%) and from white ethnic groups (14%). During the COVID-19 pandemic, COVID-19 was by far the most common cause of death for people with learning disabilities across all ethnic groups, although there were big differences in the percentages of people within each ethnic group who had died from COVID-19:

• 60% of people with learning disabilities from a 'mixed/multiple' ethnic group
• 38% of people with learning disabilities from a Black/African/Caribbean/Black British ethnic group
• 31% of people with learning disabilities from an Asian/Asian British ethnic group
• 29% of people with learning disabilities from an 'other' ethnic group
• 26% of people with learning disabilities from a white ethnic group

The 'We Deserve Better' report documents the huge range of causes of the extreme ethnic inequalities in health amongst people with learning disabilities and provides clear recommendations for what needs to be done. This new information from the 'Health and Care' dataset, although limited, clearly points to a practical agenda for action on the part of health services in terms of proactively focusing on ethnic inequalities in people getting vaccines. Without action, data is nothing. But without data, action is clueless.