NHS Data Gaps for Learning Disabilities

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NHS Data Gaps for Learning Disabilities

The information the NHS needs to monitor the health and healthcare of people with learning disabilities.

Gyles Glover Eric Emerson and Susannah Baines

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NHS Data Gaps for Learning Disabilities

The information the NHS needs to monitor the health and healthcare of people with learning disabilities.

Gyles Glover Eric Emerson Susannah Baines

IHAL2011-06

Acknowledgements

We would like to thank the following people for their contributions:

Netta Hollings, Tony Smith, Phil Cooke and Paul Brown of the NHS Information Centre, Nicola Vick of the Care Quality Commission,

Nick Gradwell of the Equality and Human Rights Commission,

Alison Giraud-Saunders and Andrew McCulloch of the Foundation for People with Learning Disabilities and the Mental Health Foundation,

Matt Hoghton, and

Louise Unsworth of the North East Public Health Observatory

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About the Authors

Gyles Glover is a co-director of the Improving Health and Lives Learning Disabilities Observatory. He is a consultant in Public Health at Tees, Esk and Wear Valleys NHS Foundation Trust, based at the North East Public Health Observatory. He is Professor of Public Mental Health at the University of Durham

Eric Emerson is Co-Director of the Improving Health and Lives Learning Disabilities

Observatory. Eric is also Professor of Disability & Health Research at the Centre for Disability Research, School of Health & Medicine, Lancaster University and Visiting Professor at the Australian Family and Disabilities Studies Research Collaboration, University of Sydney.

Susannah Baines is a Research Associate with the Improving Health and Lives Learning Disabilities Observatory, and is based at the Centre for Disability Research, School of Health

& Medicine, Lancaster University.

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1 Executive Summary

In this report, we survey the information collected by the Department of Health, and the NHS in England, about the health and healthcare of people with learning disabilities. Our aim is to explore what important areas are not covered adequately, or not covered at all.

We look at how effectively the information the NHS collects can help us answer three questions:

1. How good or bad is the physical and mental health of people with learning disability?

2. Do people with learning disability have the same access to healthcare at all levels other people have?

3. Are people with learning disability offered the same treatments for the same illnesses, and are the outcomes similar to those for other people?

The report is prompted by the concerns identified in the report of the Michael Inquiry into healthcare for people with learning disability.¹ Chapter 4 considers the need for all

healthcare organisations, including the Department of Health, to check, systematically, whether people with learning disability have the same access, to similar quality healthcare, as other people. As a starting point they what types of health problem requiring care people with learning disabilities suffer, and with what frequency.

The 2010 Equalities Act has set out clearly a public sector equality duty for all public authorities.^{2, 3} This makes the urgency of these considerations for NHS commissioning and providing organisations and for the Department of Health itself, even clearer.

Information Sources

NHS information sources covering health and healthcare can be divided into four broad groupings.

Population health is monitored mostly through surveys. There are several continuous survey programmes including most notably the Health Survey for England (HSE) and the Psychiatric Morbidity Surveys (PMS), covering issues of physical and mental health

respectively. Both survey mainly individuals living in private households, drawing random samples from the Post Office national directory. The HSE is annual and includes all adults in the households visited. In addition to individual detail, this provides information about household contexts in which people live, which could be particularly valuable for considering the healthcare needs of people with learning disability.

The adult PMS has established a seven-yearly pattern, and the child and adolescent survey

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samples. As yet, none has surveyed people with learning disability. Other regular survey programmes cover narrower areas including childhood obesity, exercise taken by adults, and dental health. At the time of writing, the NHS Dental Observatory is undertaking a special survey of people with learning disability as a booster to the decennial Adult Dental Health Survey.

The Department of Health commissioned a survey of the lives of people with learning disability in 2003/4; this covered the experiences in a wide range of areas of the lives of subjects. However physical health was covered only briefly.

Primary care, comprising general practice, NHS dentistry, ophthalmic opticians and pharmacists, is covered by a number of datasets. The only one providing extensive clinical detail is the Quality and Outcomes Framework (QOF) introduced into general practice in 2004. This gives the numbers of individuals who have selected conditions, in some cases information about their clinical care and, in a few, measures of outcome. The Framework includes numbers of individuals known to have learning disability, and some of the other conditions covered, notably epilepsy, are of particular relevance. But the QOF indicators are independent of each other. So they cannot tell us whether people with learning disability are more or less likely to have the other conditions, and if they do, whether they are treated comparably well or successfully. A new indicator of thyroid function test coverage for people with Down’s syndrome at risk of developing thyroid disease is being introduced, but the design of this means it will not provide data about either the numbers with Down’s syndrome or the numbers of these who have thyroid problems.

Currently, limited clinical information is collected about the activity of other community or primary health services. The information that is collected does not identify the position of people with learning disability distinctly. A new community information dataset has recently been approved. This includes information about disabilities of those receiving care. However as yet no data are available.

Secondary health care activity is covered in much greater detail. Commissioning datasets, comprising records of individual patients’ care, are collected about all types of hospital activity. For inpatient care these include details of diagnoses and treatment procedures. The mental health minimum dataset integrates data about inpatient stays, clinic attendances and home-based contacts. At present these sources do not identify people with disabilities directly. It is commonly possible to identify them through the diagnoses they are given, but this complicated and unreliable.

There are a number of other datasets which cover specific clinical areas in more detail. The cancer registries have been in place for many years, most others datasets are in various stages of development and implementation. These cover renal care, maternity services, physical and mental health services for children and young people and psychological

therapies. The child and adolescent mental health, and psychological therapies datasets, and

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the renal dataset in relation to children, include information about whether individuals have learning disability, the others do not.

In addition to these are a substantial number of clinical audit datasets, mostly maintained and analysed independently by professional bodies. However these are not directly accessible to commissioners, providers or healthcare inspectorates in the way that directly connected NHS data are. In most cases, where datasets are published, it appears they would not support separate reporting for people with learning disability.

Major health problems for people with learning disability

The next section of the report follows the review published by Improving Health and Lives:

Learning Disabilities Observatory in 2010, and covering major health problems for people with learning disability.⁴ The following table sets out the most common and important clinical problems. In each case we consider whether the existing information systems are able to show whether the care received by people with learning disabilities and its outcomes match those for other people.

Health Illnesses

General Health Status Respiratory Disease Constipation

Diet Heart Disease Endocrine Disorders

Exercise Epilepsy Cancer

Obesity and Underweight Sensory Impairments Injuries, Accidents and Falls

Substance Use Oral Health Osteoporosis

Sexual Health Dysphagia Physical Impairments

Diabetes Mental illness

Gastro-oesophageal reflux disease (GORD)

Dementia

Actions that could make a big difference

The final section of the report identifies four areas, where specific action could make a big difference.

1. Introducing additional samples of people with learning disability in the Health Survey for England, and possibly also the Psychiatric Morbidity Survey programmes would provide up- to-date and authoritative information about a wide range of aspects of their physical and mental health. This would provide evidence for new commissioning groups about the numbers of people with learning disability they should expect to see receiving a range of treatments and ‘reasonable adjustment’ provisions. It would also provide key evidence about the age and state of health of family carers of people with learning disability.

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2. Extension of the reporting system for the Quality and Outcomes Framework in primary care could provide extensive additional information. The Framework data gathering process already identifies people known to GPs as having a learning disability. The definitions used for this could be combined with some or all the other indicators to provide a range of key population level health, health care and screening indicators. These would indicate whether people with learning disabilities are receiving similar levels and quality of care as others for a number of key conditions. This would require no additional data collection or reporting on the part of general practice staff. The change would require modification only to the

automated data extraction processes and the central database, areas that are already altered most years in response to developing clinical priorities.

3. The addition of a field identifying individuals with disabilities to all of the commissioning datasets covering inpatient and outpatient care in hospitals would, at little additional cost, and with little additional work entailed in hospitals, provide extensive and detailed

information about their care in these areas.

4. Finally, in the area of national clinical audit, the NHS Information Centre could seek tenders for a group to develop a professionally-led, but national audit of the findings of GP health checks for people with learning disabilities. In addition to providing more detailed evidence than the present reporting system on the numbers receiving these checks, a system of this type could play a major role in improving the quality and consistency of the checks themselves, in clarifying the appropriate scope and timing for different groups of individuals, and in establishing their status as essential reasonable adjustments in the primary care of people with learning disability.

Other areas of health data will also need, in time, to adopt comprehensive disability monitoring. However these four will give the widest coverage of the most relevant areas.

We argue that they should receive the greatest priority.

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2 Introduction

A lot of information is collected about health and healthcare in England. From it we know a great deal about the health of the population, how people use health services, what sorts and amounts of care they receive and, in some cases, something about the outcomes of this care. It is hard to plan for, or manage things which are not counted; managers need to know not only what is needed, but how much, when and where. So this information provides the view required by people planning and managing the health service, and those responsible for assessing if it is meeting its goals.

This report is about whether health service planners, managers, and assessors, locally and nationally, have the numerical views they need to assess and provide effectively for the healthcare needs of people with learning disability.^a

It is prompted by the Michael Inquiry into the healthcare of people with learning disabilities, the first stage of the Government’s response to Mencap’s report about six people with learning disability who died through inadequate care.^{1, 6} The Michael committee argued that systematic checks were required if NHS commissioning and provider organisations, and the Department of Health itself, were to be able, in future, to assure themselves that people with learning disability could access health care as well as other people, and with comparable results. At the time of their study, a lack of relevant numerical information, systematically collected and centrally collated made checks of this type impossible. The latest report of the

‘Better Metrics’ project, completed late in 2006 a little before the Michael Committee sat, identified twelve indicators of care for people with learning disability; none was supportable on the basis of data actually available either then, or to the Michael Inquiry.⁷ This report is intended to survey the numerical information collected nationally by the NHS for healthcare planning and evaluation, to examine where it is inadequate to these functions for people with learning disability, and what could be done reasonably quickly to address the deficits.

a The Learning Disability Observatory’s first publication set out our operational definition of definition of ‘learning disability’. This developed practical rules to operationalise the definition presented in the 2001 white paper Valuing People:

‘Learning disability includes the presence of:

a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;

a reduced ability to cope independently (impaired social functioning);

which started before adulthood, with a lasting effect on development.’

In this report we are not primarily analysing data, but considering the data that are needed to inform health planning and evaluation in relation to the Public Sector Equality Duty. So in this report, unless otherwise indicated, we will use the term ‘learning disability’ in the sense it is used in the statutory guidance in relation to the Equality Act 2010.5. Secretary of State for Work and Pensions Equality Act 2010. Guidance on matters to be taken into account

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Checking whether every NHS organisations around the country collects sufficient information for their own work in these areas would be a much larger task. As most probably collect a lot of detailed information for their own internal management and evaluation purposes, fully assessing the position of each would require a complex and extensive national survey. However, to some extent, the question can be answered by

looking at the information collected by all and submitted to national datasets. The reason for this is that an important aspect of the question for any individual local organisation, is

comparing their performance to that of similar organisations. This requires information collected by all, according to uniform principles.

2.1 The questions

There are three broad types of question that those assessing, and providing for the healthcare requirements of people with learning disability need to examine:

1. How good or bad is the physical and mental health of people with learning disability?

This would cover both issues of illness and health; how many people in the population have what sort of illnesses, how healthy do people feel and to what extent does illness,

impairment or a lack of well-ness limit their activities? Not everyone who has health

problems seeks help, and healthcare may be more readily available to some than others. So these questions can only be effectively addressed through population-based surveys.

2. Is access to healthcare at all levels for people with learning disability comparable to that for others?

This type of question requires data about patterns of health service use. Interpretation is not simple as people with learning disability may be more or less likely than others to have various types of treatable illnesses or health problems. If the data were available, analysis of care patterns could show how much more or less frequently they obtain care for particular illnesses. This could be interpreted in the light of what is known about the frequency of those illnesses from surveys and research studies. It could also show whether this varies between parts of the country.

3. Do people with learning disability receive similar treatments and care for similar conditions, and are the outcomes similar?

Going beyond simply the question of whether people with learning disability are being seen by health services, we need to be able to examine whether they get similar treatment for similar problems. This was illustrated in the case of Emma, a woman with a lymphoma described in Mencap’s report.⁶ Exploring the treatments people receive ideally requires

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complications. Outcome analyses are more complex still. Where illnesses are commonly fatal, survival rates are a useful outcome measure. In other cases, the aim of treatment may be to establish or recover degrees of physical functioning or practical independence, to relieve pain or other distressing symptoms, or, as in the case of optimal management of diabetes or blood pressure, to reduce the likelihood of development of other conditions. In most cases the NHS does not monitor these more complex outcomes in a systematic, universal way which could support comparison of outcomes for people with learning disability.

2.2 Why should the NHS monitor health and health care for people with learning disability?

In a period when health services are under great pressure to reduce costs, suggestions that additional information should be collected are likely to meet the response that even if this is a good idea, now is not the time. Irrespective of arguments about desirability, equity, appropriateness or rights and wrongs, there is one simple reason why this position is no longer tenable. Equalities legislation has now moved to a point where for the NHS collectively, or NHS organisations individually to fail to monitor equality of access and outcomes for people with disabilities would be a default of a statutory duty.

The legal requirement for providers of services not to discriminate against people with disabilities first appeared with the 1995 Disability Discrimination Act. This introduced the concept of the requirement to make ‘Reasonable Adjustments’ where necessary to achieve a non-discriminatory result.⁸ The 2005 Disability Discrimination Act took this further,

introducing a duty for public authorities to ‘promote equality for disabled people.⁹ This duties was anticipatory: Authorities could not simply wait to be challenged by people who felt they had not got the care, or other services due, and then remedy the deficits. Instead they were required to take positive steps, including making ‘Reasonable Adjustments’, to ensure this did not happen.

Most recently, the legal requirements have been consolidated in the Equalities Act 2010, the relevant sections of which became operative on 5^th April 2011. This sets out the Public Sector Equality Duty (s149). This is three-pronged: Public Authorities are required to eliminate discrimination against people who share a relevant protected characteristic (including disabilities), to advance their equality of opportunity and to foster good relations between them and others. The range of Public Authorities to which the duty relates is set out in the primary legislation (Schedule 19). It includes Government Departments, Strategic Health Authorities, Primary Care Trusts, NHS Trusts, Special Health Authorities and NHS Foundation Trusts.

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and on the types of information public sector agencies will need to comply.^{2, 3} Authorities will need both to collect and to make use of information indicating how successfully they are narrowing any gaps in outcomes between disabled and non-disabled persons.

Given the strength and clarity of these legal requirements, the questions become not whether but how NHS organisations should establish a basis in information to inform themselves about areas where they need to assure themselves that possible inequities of access or outcome have been effectively tacked. Developing national standards for the data to be collected will help in two ways. First it will reduce duplication of effort and second it will lead to data becoming available which, because nationally comparable, serve the required purposes better. The aim of this report is to provide a detailed guide to what should be done and how.

2.3 The report

This report has three major sections. The first surveys the information currently collected, or planned, by the NHS Information Centre. It looks at how far these sources help in

establishing the answers to key planning and evaluation questions. The next looks at the areas where data are particularly relevant for studying service access and outcomes for people with learning disability. This has been written mainly as a large table. The table builds on work from our previous report on the specific health problems of people with

learning disability.⁴ That report concluded with a summary table; here, we add further detail.

Reviewing the tabular section, a number of repeating themes are clear. It emerges that a fairly small number of quite feasible steps could substantially improve the current position.

So a final section to the report outlines these in more detail.

This is potentially a very large field. To keep the study within reasonable bounds, we have limited it in two respects. First it considers only information directly about the health of people with learning disability and the healthcare they receive. In most cases we have not explored information about how this is provided, the numbers or characteristics of specialist staff or facilities, or any ‘reasonable adjustments’ made. Neither have we considered

provision for, or involvement of, carers. Second we have only considered areas that, since the late 1980s, have been considered the responsibility of health- as opposed to social-care services. Third, as we are concerned with the provision of national services, we have

focussed mainly on work with a national scope. Research studies covering limited numbers of services, or technical developments in information systems restricted to a few local areas, are illuminating, but will not satisfy the requirement for NHS service commissioners and providers nationally to monitor the care they provide to all the populations for whom they have responsibility.

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Box 1. Key areas of work for the NHS Health and Social Care Information Centre

1. Delivering products and services that address key issues and priorities in NHS and social care 2. Becoming the recognised source of data for secondary uses in the health and social care system

3. Leading on the development of data and information standards and ensure data quality is fit for purpose in terms of consistency, relevance, timeliness and accuracy

4. Establishing an ‘honest broker’ and a ‘safe haven’, capable of managing the authorised disclosure of information to users

5. Leading the ‘information management’

community in health and social care

3 Information currently collected

This section surveys information currently collected by the NHS about population heath, healthcare and healthcare outcomes. Our approach was to survey relevant sections of the NHS Information Centre’s website, following relevant links.

The NHS Information Centre for Health and Social Care (NHSIC) is the strategic agency responsible for developing and managing information in the NHS, for overseeing its national collation and for making it available in appropriate forms to the full range of users. In addition to NHS commissioning, provider, and public health organisations, they supply information to specialist commercial

healthcare intelligence companies, university researchers and many others. Box 1 sets out its key areas of work as described in its most recent strategy document.¹⁰ The NHSIC website includes three groups of relevant pages:

1. Descriptions of datasets – these are specifications for the items of information collected throughout the NHS about patients and the care they receive. The NHSIC website documents both currently

operational datasets and datasets that are under development.

2. Details, sometimes including data reports, of information collections commissioned by the NHSIC from external agencies.

3. Actual data - pages providing access to reports and digests of information collected through the datasets.

The section is roughly structured around the three types of question outlined in section 2.1 of the introduction: the health of the population, access to healthcare and treatments and their outcomes. Healthcare access is considered separately for primary and community care services and secondary and tertiary care organisations, reflecting their very different

organisation and roles.

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3.1 The health of the population

The health of people in the general population is a central concern in planning health services. The nature, scale and distribution of health problems cannot be inferred simply from health service use, as individuals only seek help for problems of which they are aware, and only use services when these are provided and accessible. So the main way of

measuring the public’s health is by conducting population surveys. These use samples of the whole population, or of segments of it delineated by age or other characteristics. Sample members are chosen at random, usually visited in their own homes, and, if agreeable, asked sets of standard questions, tested or examined for simple physical measurements and sometimes invited to produce samples for laboratory analysis.

As planning is a long term process, in addition to looking at the people’s current health problems, surveys sometimes try to anticipate future health problems. They do this by measuring lifestyle characteristics, such as dietary habits, and physical characteristics such as weight and blood pressure, known to influence the development of illnesses.

Eight surveys, or survey programmes are described here. The first six are at least to some extent recurring. The other two were one-off surveys, mentioned here because of their direct relevance.

3.1.1 Health Survey for England.

This is the currently the largest and most important public health survey in England.¹¹ It has been in existence for nearly twenty years. Each year, between 10,000 and 20,000 people are approached, mostly on the basis of samples of residential households drawn from the postcode address file maintained by the Post Office. Questions cover household characteristics, personal demographic facts, self-perceived general health, illnesses and disabilities, health related behaviours including diet, exercise, alcohol consumption and smoking and use of health and social care services. There are specific sections on many individual areas of health such as diabetes, cardiovascular health, sight, dental health and mental wellbeing. In addition to the interview (by a survey interviewer) consenting subjects are visited by a nurse who makes a detailed inventory of medications, asks about

immunisations, measures blood pressure, weight and physical dimensions, and takes samples of urine for salt levels, saliva for cotinine measurement (to corroborate responses about smoking) and blood for measures of hyperlipidaemias and diabetes. It is potentially of particular interest for people with learning disability because the sampling rules instruct that all adults and (usually) up to two selected children in chosen households should be

interviewed. Household identifier numbers are retained in the dataset available to researchers. This means that for any subject identified as having a learning disability, it is possible to identify not only how many other adults live in the same household, but also their ages and states of health.

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A survey of this type could answer many key questions about the health of people with learning disabilities. However in its present form, the Health Survey for England does not.

This is because there are three problems with the sampling design. First, it covers only people in private households. This excludes anyone living in a residential care home of any type. Second, the sample size is too small for detailed reporting of subgroups comprising much under 5% of the total sample size. People with severe or profound learning disability make up only one tenth of this proportion. Third, many people with mild (or ‘borderline’) learning disabilities are unlikely to be correctly identified given that informants must first answer affirmatively when asked ‘Do you have any ‘long-standing illness, disability or

infirmity’ and then, when asked ‘What is the matter with you?’, they must give an answer that a coder later interprets as ‘Mental Handicap’ (the term used in the Health Survey for England coding).

The samples in the last three years for which data are available identified a total of 172 people with ‘mental handicap’ from a total sample of just under 60,000. The age profile of those identified indicates prevalences of around 6 per 1000 in the age group 6 to 15. This falls rapidly to 4, 3, 2, and 1 per 1000 in the next four decades of life. The rapid decline is presumably attributable primarily to a progressively smaller (and probably less

representative) proportion of people with learning disability living in normal households.

This number is too small for meaningful conclusions about their health, even (as done here) taking several years data together.

The approach which has been taken for other minority groups has been to establish occasional booster samples. These have covered children (1997, 2005, 2006), members of minority ethnic groups (1999 and 2004), older people living in residential care (2000), infants, young adults (to 24), mothers with infants aged under 1 (2002), and older people (2005). As yet people with disabilities have not been targeted.

3.1.2 Psychiatric morbidity surveys

There are several other survey programmes in which health issues are covered. The

Psychiatric Morbidity Surveys programme operates intermittently. Since 1993 there have been three national surveys of adults living in private households, two of children, one of members of minority ethnic groups, one of children in care, one of prisoners, and, as part of the initial adult survey, booster samples of people living in institutional care and homeless people. The sample sizes concerned have been less than half the size of the Health Survey for England. As such they are not well suited for analysing results for small subgroups, such as people with more severe learning disability.^12-18 They have, however, provided some useful information on the health status of children with (predominantly) mild learning disabilities.^19-

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3.1.3 The National Child Measurement Programme

The National Child Measurement Programme collects height and weight data from children in reception (age 4) and year six (age 10) classes in schools throughout England.

Data collection in special schools for children with special educational needs is encouraged but not mandated. Children’s school type is collected, but not details of any identified special educational need. Anecdotal reports indicate that measurement issues are

considered complex for some children with disabilities who are not able to stand for height measurement. Thus, though most children with identified special educational need in the form of moderate or more severe learning difficulties, or autistic spectrum conditions, are probably covered by the survey, and the number of children covered would be sufficient for separate reporting on children with learning disability, the scope of data collected does not permit this.²³

3.1.4 The Adult Dental Health Survey

The Adult Dental Health Survey has been carried out once each decade since 1968. The most recent survey (describing the position in 2009), was published in 2010.²⁴ Like the Health Survey for England, its sample size and design (11,380 adults in normal residential households, without special support arrangements for people with learning disabilities) was insufficient to give adequate coverage for people with learning disability. However, in this case this was recognised by the commissioners of the survey and a booster survey of people with learning disability is currently underway.²⁵

3.1.5 The Active People Survey

Sport England is the government agency responsible for promoting public participation in sport, (although its primary goal concerns ‘building the foundation of sporting success’). It has commissioned a range of surveys of how many people engage in sport and active exercise. The largest and most long running of these is the Active People Survey. This provides the baseline and target monitoring for the government’s sport-participation target.

It is a large survey, planned to provide, in each round, 1000 respondents from each of the 354 council areas of the time it was set up. Thus the sample numbers would be large enough to report on subgroups such as those with learning disability. Questions include whether the respondent suffers from any limiting, long-standing illness, though not what type. However the survey method, (telephone interviews using random-digit dialing) excludes people unable to answer the questions for themselves, and the sampling frame appears to exclude residential care homes (though it probably includes group homes).²⁶ 3.1.6 Smoking, drinking and drug use among young people in England A survey of Smoking, drinking and drug use among young people in England in has been carried out regularly since 1982. The most recent published results cover 2009.²⁷ This

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secondary schools. The sample is designed to produce roughly 10,000 responses each year.

Special and hospital schools and pupil referral units are excluded from the sampling frame, and it is unlikely that children with even moderate levels of learning disability would be able to complete the questionnaire.

3.1.7 Adults with Learning Difficulties in England

In 2003/4 the Department of Health commissioned a survey of the life experiences of Adults with Learning Disabilities in England.²⁸ This involved face to face interviews with a

representative sample of 3,000 adults with learning disabilities living in private households and different types of supported accommodation. It has been used by researchers to better understand the determinants of poorer health among people with learning disabilities.^29-31 However, whilst covering a very wide range of topic areas, including many factors that may contribute to health, information about health itself was limited and the survey did not include biometric data such as height, weight and blood pressure, or questions about

detailed issues of diet, medication or specific health problems such as epilepsy or dysphagia.

There are, at present, no plans to repeat this survey.

3.1.8 The Adults with a Disability and Sport National Survey

Sport England commissioned a survey of sports participation by people with a disability in 2000/2001 (Adults with a Disability and Sport National Survey). This involved survey interviewers visiting a sample of people identified as having a limiting, long-standing illness in two established contemporary national surveys (the Labour Force Survey and the General Household Survey). Proxy interviews were allowed in a number of situations including where the subject had ‘learning difficulties’. The categories of disability for which responses are reported included ‘Cognition disability’, a grouping which clearly includes people with

learning disability. However it appears to be much broader than this, including at least those with adult-acquired brain injuries or illnesses involving cognitive decline. The target

population was people with limiting, long-standing illness aged 16 to 59. At the time of the study, this group comprised roughly 20% of working age adults in the two surveys from which the sample was drawn.³² Within the sample, 45% had a cognition disability, indicating that this state would have covered roughly 9% of the whole population in this age group, roughly twenty times the number of individuals identified by GPs as having a learning disability.³³

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3.2 Access to primary- and community-based healthcare.

In this grouping we have considered both the four types of general health service that have historically been outside contractors in the NHS (general practitioners, dentists, opticians and pharmacists), and the community based services directly provided by PCTs or NHS provider trusts.

3.2.1 General practitioners

General practitioners provide information about their patients, and some aspects of the care provided to them in the Quality and Outcomes Framework (QOF). Published each autumn, this provides, among other things, information about the number of adults looked after by each practice identified by their GP as having a learning disability.

The QOF was originally introduced in 2004 to provide a framework within which financial incentives could be linked to good clinical practice. To achieve this, information was required about patterns of care for individual patients in all NHS general practices. Almost everybody in the country is registered with a GP, GPs undertake a large proportion of routine preventive screening work and are central to the treatment of most simple, and much

complex illness. Thus the QOF has become a major source of information about patterns of particular illness and healthcare in the general population.

The 2009 QOF process, the most recent for which results are available at the time of writing, collected information on 134 indicators, 86 of them about clinical issues.³⁴ These included numbers suffering from some chronic diseases, several important for people with learning disability (epilepsy, obesity, severe mental health problems, hypothyroidism and dementia).

In some cases the system goes further, examining aspects of the process and outcomes of clinical care. For example, for people on drug treatment for epilepsy, there are additional counts of the number who have had reviews or been seizure-free for a recent year. Most indicators only consider one type of problem at a time, although one in this dataset (DEP1) draws on the association between depression and heart disease or diabetes.

The QOF dataset gives us important information about the prevalence of learning disabilities in adults, though not children. One indicator (LD1) asks whether GPs are able to provide a register of individuals aged 18 and the reporting includes the number for each practice. The most latest revision of the QOF indicators and associated rules (version 19) goes further, adding a new indicator for whether individuals with Down’s syndrome at risk of

hypothyroidism, have been tested for this recently.^{35, 36} When data on this indicator become available, (probably in 2012), this will provide a small amount of extra data on the quality of care for people with Down’s syndrome, but the indicator design means this is all it will be able to show. It will not provide either the number of adults with Down’s syndrome, or the number of adults with Down’s syndrome who have hypothyroidism, because those with Down’s and known to have hypothyroidism are excluded as they are no longer ‘at risk’ of

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developing it.³⁴ Clarifying the nature of differences between PCTs on this indicator will not be possible on the basis of the data being collected. The counts are intended only to indicate whether practices reach a quality threshold. Thus the data will show the number of people in each practice whose thyroid function testing status is of interest for the indicator, and the number of those where testing was done. Ignoring the issues of registration and diagnosis dates for simplicity, patients identified as having Downs syndrome many be omitted from the count of individuals whose blood test status is of interest in three ways:

They have not been recorded as having a learning disability (see below) They are on the thyroid problem register and receiving treatment

They are noted as an ‘exception’ (we have been unable to find how this is defined in this context)

Making sense of difference which are seen in the performance of PCT areas on this indicator would require more detailed breakdown. Figures would be needed for each of the following elements and the extent of their overlap:

People with / without qualifying diagnosis for learning disabilities People with / without Downs syndrome

People on / not on thyroid register

People receiving / not receiving treatment for thyroid disorder People noted / not noted as ‘learning disabilities exception People who had / did not have blood test

As drafted, QOF data will only tell us the first and third of these numbers (LD1 and Thyroid1).

3.2.2 Identifying people with learning disabilities in GP information systems The requirement that GPs should identify all the individuals on their practice list who have learning disabilities was recognised in the 2001 White Paper Valuing People.³⁷ QOF indicator LD1 is satisfied as long as the practice returns a number of patients; practices where the number recorded is zero failed in this QOF indicator (1.4% of practices, covering 0.38% of the population aged 18 and over in the 2009 data). The business rules for identifying people are based on automated scans of practice information systems. These identify patients with explicit diagnoses of a learning disability, or who are noted by the practice as being on the practice learning disability register. However they do not include either diagnoses which are consistently associated with learning disability (e.g. Down’s syndrome) or procedures or referrals which imply a learning disability (e.g. such as learning disability health checks).

Research studies, including one study by the NHS information Centre, indicate these

omissions mean that the numbers recorded in the QOF prevalence figures underestimate the numbers of individuals whose learning disability is known to GPs and being treated.^{38, 39}

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which has been effectively implemented all the approved GP practice information systems currently in use in the NHS. As noted above, several other conditions also considered in QOF are particularly important for people with learning disabilities. This means it should be a relatively straightforward task to design queries which would identify how many people with learning disabilities have each of these conditions around the country. Existing QOF

indicator definitions could also facilitate development of queries about the success of epilepsy treatment and the coverage of cervical screening for people with learning

disabilities. The key contribution of the work that has already been done on QOF is that it provides precise definitional rules for extracting all of these elements of information from the full range of relevant GP practice information systems. Similarly all GP practice systems have coding systems and interrogation facilities able to support the application of standardised queries.

3.2.3 Other data from General Practice

The only additional statistical details collected at present comprehensively, from all general practitioners, with relevance to people with learning disability, relate to performance of the Directed Enhanced Service of health checks. We reported on these data in September 2010.⁴⁰ At present this collection gives details only of numbers of people eligible and receiving funded health checks. Collection and interpretation of data about the actual findings of health checks is a task more suited to a national clinical audit. This possibility is discussed below.

In addition to these national comprehensive data collections, there are a number of large, representative sample datasets from general practice information systems. The best known of these is the General Practice Research Database (GPRD) which incorporates linked,

anonymised data extracts from practices covering roughly 10% of the population of the UK.⁴¹ These are extremely valuable for research studies. For example, the NHS information Centre undertook a large study of the extent to which people with learning disabilities were able to access primary care.⁴² However they are nowhere near comprehensive, and as such cannot satisfy the information requirements of PCTs or of the Department of Health for monitoring access to services.

3.2.4 Dental services

The extent of dental services provided through the NHS is recorded statistically through returns, sent by general dental practitioners on form FP17. In addition to details of treatments provided, these record sufficient personal details to allow assignment of NHS numbers, details of eligibility for free treatment and the individuals self-identified ethnic group. However the data return does not record disability status either directly or indirectly.

Dental care is also an area where the NHS has not, in recent times, had the dominant provider position it has in other areas. Thus even if it is the case that the majority of people

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with learning disability look to the NHS for dental care, contextual information about the care we would expect to see them receive is not so readily available.

3.2.5 Pharmacy services

Some statistical details are collected about prescriptions dispensed by primary care

pharmacy services. However, for the most part, these are about the numbers of prescription items and the types and quantities of drugs covered. The only detail reported giving any information about the individuals for whom drugs are prescribed is whether or not charges were levied. This gives some indication of the proportion of prescriptions for people of working age in receipt of income support, but nothing else.

Under a Direction issued in 2005, PCTs are able to commission several kinds of local

enhanced services from pharmacies that provide NHS dispensing. These include care home, home delivery, medication review, medicines assessment and compliance support, and schools services. These would all appear to have potential as opportunities for ‘reasonable adjustments’ to the ways pharmacy services are provided to ensure that people with learning disabilities receive similar benefits to people without disabilities. The extent of provision of these enhanced services was recently reported through by the NHS Information Centre, however the statistical digest only documents the number of pharmacies in England contracted to provide each type of service.⁴³

3.2.6 Ophthalmic services

PCTs commission a range of ophthalmic examination and dispensing services and some routine data are collected about their activity.⁴⁴ Data collected about people receiving sight tests include their age, PCT of residence, student status, presence of diabetes or glaucoma, registration as blind or partially sighted, receipt of means-tested income benefits, and whether or not they are a prisoner on leave. Similar data are collected about beneficiaries of the optical voucher scheme, which provides financial support for spectacles and other optical correction equipment. More limited data are collected on sight tests in peoples’ homes and on repair and voucher-funded repair and replacement of spectacles. No other type of disability is reported in any of these contexts. Ethnic affiliations are also not reported.

3.2.7 Community health services

Community health services include the work done by community nurses, physiotherapists, chiropodists, speech and language therapists, occupational therapists, and many others. The only data currently collected centrally about these areas of work describe the size of the workforce. These are strictly outside the scope we set out in our introduction, but brief comments are worthwhile.

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numbers of whole time equivalent nurses per 100,000 population show surprisingly large ranges. Omitting London (which is something of a special case because of the extent to which adults with learning disabilities are resettled outside the strategic health authority), strategic health authority-level figures range from 1.9 to 0.7 times the national average.

Figures for nursing auxiliaries show more exaggerated disparities.⁴⁵

A new Community Information Dataset has recently been approved by the Information Standards Board, although information from it is unlikely to become available in the next two years. This includes a field about disabilities patients receiving community interventions have, which permits multiple entries. It includes one category for disability of ‘Memory or ability to concentrate, learn or understand (Learning Disability)’. The test applied is whether the person considers themselves to be "someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities".⁴⁶

3.2.8 Sexual and reproductive health clinics

These services provide contraception, reproductive and sexual health advice, treatments for menstrual and menopausal symptoms, pregnancy testing, assessment for and aftercare following terminations of pregnancy, screening for cervical cancer and fertility interventions.

Data are collected on these activities using a new patient based minimum dataset, but returns beyond PCT level are as anonymised aggregate data. No data about disabilities are included in the approved dataset.⁴⁷

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3.3 Access to secondary health care

Secondary heathcare services can be thought of as all areas of care beyond those provided locally - health services that people go to beyond local health centres, pharmacies, dental surgeries or opticians. In most cases they require individuals to be referred by their GP.

They include hospital outpatient clinics for investigation or treatment, inpatient and day- patient units covering a wide range of specialties. An important element of this group which people use directly, without referral by their GP is the emergency services – ambulance services and accident and emergency departments.

A great deal of information is collected about the activity of secondary care services. This can broadly be divided into detailed datasets, usually documenting every episode of a type of care, and simpler collections of aggregated activity tables. The NHS Information Centre is the key source of information about national datasets for both. The Centre’s web page identifies twelve secondary care datasets which describe patient care, however only four of these have been implemented long enough for data to be currently available, and two are currently under development. The most important is the Commissioning dataset, (though in reality this is four separate datasets). Others cover care for renal and mental health care and for cancer. A further nine datasets are at various stages of development.

3.3.1 Commissioning Datasets

These are the most important and detailed datasets. They form the basis for monitoring and managing service agreements between commissioners and providers, the development of commissioning plans, calculating payments under the Payment by Results processes, clinical governance work, local needs assessment, waiting time targets, national comparator and other statistics and many other functions. There are four main commissioning datasets, all submitted by providers regularly (usually monthly) and all documenting care at the level of individual episodes or attendances for individual patients. Detailed documentation is in a series of interlinked web pages, not one, or a set of printable documents.⁴⁸

Simplest is the accident and emergency (A&E) attendance dataset. This has only one type of record. The outpatient care dataset includes two major types of record, attendances

(including missed attendances) and ‘future attendances’ (appointments). The elective admission list (waiting-list) dataset has two formats; waiting list events and an end of period census, or statement of the whole current list. The admitted patient care dataset covers mainly hospital care, but this may be in-patient, day patient or regular day or other attendance. Record types cover general episodes of hospital care which may be grouped when a patient has more than a single period of care during a hospitalisation. Additional sections document characteristics specific to deliveries (of mothers) and births (of infants), periods of intensive care or psychiatric phenomena where relevant.

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The majority of hospital episodes are confined to a single month, so monthly submissions simply accumulate. However, when episodes cross month-ends, updates are filed. For detained and long-stay patients in psychiatric specialties there is also a dataset for an end of year census, though it is not clear that these are routinely collected.

These should form the single most important data source for analysing the extent, and, to a limited extent, the outcomes, of secondary clinical care. In most instances they document diagnoses or relevant clinical procedures. Patients are identified by NHS numbers in the original source data, and patient characteristics are reported in all cases. These always include date of birth, sex, place of residence, ethnic group (except for waiting list data) and carer status (except for newborn infants). Diagnoses (primary and additional relevant diagnoses) and surgical and other treatment procedures are reported (though these are unlikely to be complete in A&E commissioning data). Some limited outcome analysis is possible from stay lengths, diagnoses of known complications, the occurrence of subsequent episodes within a spell of hospitalisation, patterns of readmission and whether patients die in hospital. Recently, death certificate data has been linked to these records where individuals die within three months of leaving hospital. This allows fuller analysis of whether or not deaths occurring during or after episodes of hospital care were related to the condition being treated.⁴⁹ A further exploratory elaboration of this system, still in a developmental stage, is the addition of patients own reports (patient reported outcome measures –

‘PROMS’) to records of hospital care for specific reasons. At present data are available for four surgical procedures (hip and knee joint replacements, and treatment of inguinal hernias and varicose veins).⁵⁰

3.3.2 People with learning disability in the commissioning datasets

The fact that they document care at the individual patient/episode level makes it possible to analyse commissioning datasets data very flexibly. Many questions not anticipated when the datasets were designed can be explored effectively. Treatment patterns by age, sex, ethnic group and geography can be analysed across the whole range of specialties, diagnoses and operative procedures. However analyses are dependent on the right data elements being included. No single data item identifies people with learning disability explicitly,

unambiguously and completely.

People with learning disability can be identified if they are given a diagnosis either

specifically of a learning disability, or of a condition causing this, or the presence of learning disability may be inferred if patients are treated by a learning disability consultant (typically a consultant psychiatrist).

Identification by diagnoses is complex as around 200 different codes in the current

International Classification of Diseases may be relevant to learning disabilities, some more consistently than others. It is also unsatisfactory. Linkage of successive care episodes, where individuals have had more than one, indicate that recording of learning disability and

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associated conditions is erratic. If all available data for each patient are linked, individuals who are hospitalised more frequently will have more chances to have some relevant diagnostic code assigned. Learning disability-associated diagnoses are more likely to be assigned where individuals are being treated for physical illnesses with well-known associations (for example children with congenital heart defects who also have Down's syndrome). They are also more likely to be assigned where individuals are hospitalised for procedures, such as dental examinations, which would not normally be associated with hospitalisation in people without learning disability. And these analyses are technically complex to undertake thoroughly.

Practically, if hospitals are to analyse their own care for people with learning disability they need to have explicit markers to identify them.

The only work we have been able to find on the introduction of explicit markers of disability into national reporting datasets is that relating to two newly approved datasets, community interventions (described above) and psychological therapies (described below). These both adopt a single framework for all disabilities, assuming these characteristics to be self-

identified. Learning disability is identified by the category of disability of ’memory or ability to concentrate, learn or understand (Learning Disability)’.

Among the groups of people whose care will be covered by the community interventions dataset and the main commissioning datasets, there will be some with learning disability who cannot realistically be expected to answer this question for themselves; for them, proxy respondents will be needed. If data are to be collected with any degree of uniformity, guidance is needed to clarify in what situations proxies can, or should be used, who should act in this capacity, and on what evidence. It also seems likely that for many others, simpler wording, easy-read documentation and possibly other simple explanatory assistance will be needed to help people understand what the question as currently framed is asking. At present the Connecting For Health documentation does not appear to reference this.

Ideally the development of the question for use in this situation should be developed

through both consultation and field testing. Some work has recently been undertaken in this area by the Office for National Statistics, though this has focused on the design of questions for large-scale social surveys.

3.3.3 The Mental Health Minimum Dataset

The Mental Health Minimum Dataset (MHMDS) is designed to provide a person-based view of mental health care provided by specialist mental health services. It was introduced in 2003.⁵¹ The key characteristics of the care processes it seeks to document are that they:

are located in many different types of setting (clinic, community mental health centre,

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include staff of a range of clinical disciplines, acting in different combinations, often without the involvement of doctors,

may vary in duration from a single contact to several decades, and occasionally involve the use of legal provisions for compulsion.

The dataset was designed to cover mental illness services for working age and older adults.

The position then, which still obtains, is that people with learning disability are technically in the scope of the collection if and only if they are treated for a mental illness.

The dataset includes the same set of demographic variables as the commissioning datasets (date of birth, sex, ethnicity, place of residence) and also marital status. Thus, as with the commissioning datasets, people with disabilities cannot be directly identified in it. The dataset includes diagnoses, hence identification through this route is possible in theory, but, unlike admitted the patient care dataset, this is in practice not feasible. This is because only a small proportion of records have any diagnostic data recorded; the figure was a little over 20% nationally in the most recent set of annual data returns reported by the NHS

Information Centre.⁵²

The MHMDS is currently under active development. Amendments to primarily support

‘Payment By Results’ are being introduced from April 2011, and further amendments to consolidate several data collections (in version 4) have been announced provisionally.^{51, 53} However, whilst markers for all types of disability were included in early drafts of version 4, they were dropped following consultation with provider Trusts.

3.4 Treatment and outcome datasets

3.4.1 Cancer (including Cancer Registration)

National cancer statistics have a much longer history and as a result are organised. Currently the registration of newly identified cases of cancer is the responsibility of a network of registries in England each roughly covering region. The registries also review patients case- notes. Data are collected according to a common minimum dataset covering demographic and geographic characteristics of the patient, details of the cancer, including its site and how advanced it was when first presented, initial treatment approaches used, whether the patient is still alive, and if not, the date and cause of their death. Death certificate data are linked directly. These data are sent regularly to a national centre in the Office for National Statistics, which publishes regular analyses. A recent report from an equalities perspective covered ethnic differences in incidence of, and survival from different types of cancer.⁵⁴ As with commissioning datasets, the national data set does not identify disabilities as such.

Whilst some regional cancer registries may collect data about additional relevant conditions, these are not included in the current national specification.⁵⁵ A revised version, including

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(the Cancer Outcomes and Services Dataset - COSD). The consultation draft does not include any further information about patients’ disabilities.

3.4.2 National Renal Dataset

The first version of the National Renal Dataset was approved for mandatory national collection by the NHS Information Standards Board in 2008.⁵⁶ A revised version was approved by the Information Standards Board in November 2011.⁵⁷ The demographic section of this provides patients’ dates of birth, sexes, ethnic categories and places of residence; it does not include detail of disabilities. The paediatric section of the dataset includes fields on the presence of ‘intellectual disability’ and a number of syndromes

associated with both this and renal failure. However these additional data are not collected in respect of people acquiring renal failure in adulthood. No data from this source appear to have been published to date.

3.5 Datasets currently under development or approved but not yet implemented

A number of datasets have been, or are currently being developed by the NHS Information Centre, but, as yet have not been implemented. These are documented on the NHS IC website although obviously no actual data are yet available from them.

3.5.1 Child and Adolescent Mental Health Services (CAMHS)

A very detailed, person-based dataset about care of children in this group of services. The demographic section of this dataset includes indicators of both ‘learning disability’ and

‘learning difficulty’. The accompanying user guide clarifies that this is intended to distinguish between specific disorders of scholastic skills (learning difficulties) and global intellectual disability (learning disability).^{58, 59} At present this dataset is considered complete but awaiting decision about implementation.

3.5.2 Children and Young People Health Service Secondary Use Data Set This is a specification for a dataset constructed within the NHS Information Centre’s

Secondary Uses Service from a range of local data sources. Date of birth, sex and ethnicity are included in the demographic section of the dataset, and the ‘social and personal

circumstances’ section includes a single marker for special educational need as identified by the education service. It is not clear whether more than one type of special educational need can be recorded. Primary and secondary diagnoses are included in the context of

hospitalisations, though not ambulatory consultations. This appears to mirror the limitations of its data sources. The dataset is considered complete but awaiting decision about

NHS Data Gaps for Learning Disabilities

NHS Data Gaps for Learning Disabilities

The information the NHS needs to monitor the health and healthcare of people with learning disabilities.

Gyles Glover Eric Emerson and Susannah Baines

NHS Data Gaps for Learning Disabilities

The information the NHS needs to monitor the health and healthcare of people with learning disabilities.

Gyles Glover Eric Emerson Susannah Baines

Acknowledgements

Contents

About the Authors

1 Executive Summary

Information Sources

Major health problems for people with learning disability

Actions that could make a big difference

2 Introduction

2.1 The questions

2.2 Why should the NHS monitor health and health care for people with learning disability?

2.3 The report

3 Information currently collected

3.1 The health of the population

3.2 Access to primary- and community-based healthcare.

3.3 Access to secondary health care

3.4 Treatment and outcome datasets

3.5 Datasets currently under development or approved but not yet implemented