Many readers will have seen recent media coverage of the death of Connor Sparrowhawk, a young man with learning disabilities who died at an NHS specialist hospital unit in 2013 - and how his case was subsequently handled. Spearheaded by his parents, the ’Justice for LB' campaign has given renewed public prominence to the care and support provided for learning disabled people, following the earlier scandal at Winterbourne View.
In March this year, we were challenged on Twitter about our coverage of quality indicators relating to learning disability. While we do publish data on this area (for instance within our indicators and our report on mental and physical health) we have tended to present them as a subset of mental health data, and we do not have a coherent set of indicators dedicated to monitoring care quality for people with learning disabilities.
Responding to this, we approached Chris Hatton, of the Public Health England Learning Disabilities Observatory, to talk to us about quality data on people with learning disabilities. He has written the following blog for us explaining the challenges inherent in this developing field, the current landscape for quality data, and the opportunities that improved data could present for developing better evidence-based policy.
I’m very grateful to QualityWatch for inviting me to write this post, and to Mark Brown for contacting QualityWatch in the first place. Mark (who writes an excellent blog) asked QualityWatch why so few of their quality indicators concerned people with learning disabilities. As part of their response to Mark’s question, QualityWatch invited me to write this guest post.
Why does this matter? Over the past 30 years, the health inequities experienced by people with learning disabilities (or ‘intellectual disabilities’ in internationally recognised terms) have become increasingly visible. These inequities include premature mortality, poorer access to health services, and increased exposure to the social and economic determinants of poorer health. Some examples:
1) The median age of death of people with learning disabilities is 13-20 years younger than the general population, with 42% of deaths classified as premature.
2) Rates of screening for cervical, breast and colorectal cancer are all consistently lower for people with learning disabilities compared to the general population (see pages 27-44 of the numbers part of this report).
3) Rates of paid employment for people with learning disabilities are extremely low, currently around 6%.
One response to increasing concern about the health inequities experienced by people with learning disabilities is the Public Health England Learning Disabilities Observatory (also known as 'Improving Health and Lives' (IHaL)). Part of our job at IHaL is to find out more about all these aspects of the lives of people with learning disabilities, and to share reliable national information where we can find it. Our experience hopefully gives us some insight into the challenges involved in reporting national indicators relating to people with learning disabilities, and some words of encouragement.
Defining 'learning disability'
The first challenge is that ‘learning disability’ is not in itself a health issue with a clear diagnosis. The numbers of people recorded in national statistics as having a learning disability are usually the end product of decisions about eligibility for services, and can be quite unstable. For example, partly as a result of the QoF, the number of adults with learning disabilities recorded in GP registers increased by 34%, from 160,165 in 2008/09 to 214,352 in 2013/14 (see page 11 of the 2013/14 report for detailed statistics). At roughly the same time, the number of children recorded in education statistics as having a Special Educational Needs statement/Education Health and Care Plan due to a moderate learning difficulty dropped by 24%, from 41,030 in 2010 to 31,115 in 2015.
The fixing of a learning disability label to service eligibility criteria also means there is a ‘hidden majority’ of adults who were identified as having learning disabilities in education services but who are not identified as such in adult health or social services. We estimate that around 700,000 adults, out of well over a million people with learning disabilities in England in total, are part of this ‘hidden majority’ (see pages 13-15 of our report on this).
Lack of data from some Trusts
The second challenge relates to the transferability of learning disability labels across health services, and consequently different national statistics. For example, the flagging of people with learning disabilities in acute hospital settings varies hugely across NHS Trusts, and underestimates the number of people with learning disabilities using acute hospital services. In 2013/14, less than half of 152 localities in England could provide any information on the percentage of A&E attendances involving a person with learning disabilities, and the percentages provided varied from 0% to 5.3% of A&E attendances (see pages 80-83 of the numbers report). IHaL have conducted one-off analyses of Hospital Episode Statistics data showing increased preventable emergency admission rates for people with learning disabilities, but we cannot conduct these regularly enough to feed into regularly updated national indicators.
Listening to people's experiences
A third challenge concerns nationally representative surveys, which are a vital component of national indicators focusing on people’s experiences of health and social care. Within surveys of the general population, it can be difficult to identify sub-groups of people with learning disabilities, and the samples of people with learning disabilities can be too small to use as robust national indicators. IHaL has a programme of work attempting this, for example with the Millennium Cohort Study and Understanding Society. Routinely collected satisfaction information from health service patients (for example the Friends and Family test) is rarely administered nationally in formats designed to be accessible to people with learning disabilities.
A final challenge here concerns using proxies to report on the experience of some people with learning disabilities, particularly when reporting satisfaction with services. The carefully designed Personal Social Services Adult Social Care Survey, for example, reported much higher rates of satisfaction with social care services amongst people with learning disabilities than other groups, but also that people with learning disabilities were much more likely than other groups to be helped with the survey by their care worker.
Finally, it is worth noting that some important indicators for people with learning disabilities are about specific services for this group of people, such as annual learning disability health checks and specialist learning disability inpatient services. These are important to include in general sets of national indicators.
Clearer picture emerging
Although these are substantial challenges, we are getting a clearer picture about the health and lives of people with learning disabilities in England, in ways that lend themselves to national indicators. Within IHaL we are improving our reporting of a wide range of information, through regularly updated profiles and a national statistical digest, People with Learning Disabilities in England (a new edition is due out soon). With partners such as the Health and Social Care Information Centre, we are also starting to obtain large-scale sets of data (e.g. from GP practices) that allow us to examine the health and healthcare of people with learning disabilities compared to people without learning disabilities in more detail and on a larger scale than ever before.
Establishing and widely sharing a broad set of national indicators are important steps in:
1) Understanding the health inequities experienced by people with learning disabilities
2) Motivating action to eliminate these health inequities
3) Tracking whether these actions are making a difference.
It is very positive that QualityWatch is drawing attention to this challenge.