Thursday, September 14, 2006
Investigation finds people with the worst health get the worst healthcare
The Government is failing to ensure that quality health care is being delivered to people with the worst health. And it could face a legal challenge under new disability equality laws unless discriminatory practices, uncovered in an 18 month long investigation by the Disability Rights Commission (DRC), are eliminated.
The DRC’s Formal Investigation, ‘Equal Treatment: Closing the Gap’, probed the experience of people with mental health problems and/or learning disabilities of primary care services in England and Wales (1) after international research showed that these two groups were at higher risk of serious physical health problems.
From December 2006, the NHS – including Primary Care Trusts in England and Local Health Boards in Wales - will come under the Disability Equality Duty which places them under an obligation to ensure that their policies and practices do not discriminate, and do promote equal opportunities for disabled people. But a wide range of current practices, identified by the investigation, could clearly breach this duty.
The investigation provides important new evidence that people with learning disabilities and people with mental health problems are more likely to experience major illness, to develop serious health conditions at an earlier age and to die of them sooner than other people. Yet they are also less likely to receive some of the important evidence-based treatments and health checks than others with the same condition but without a mental health condition or learning disability. They also face real barriers to accessing services.
In the course of the investigation the DRC encountered complacency and a lazy fatalism that these groups ‘just do’ die younger, or ‘just won’t’ look after their health or attend appointments, often with no efforts in place to make it possible for these groups to use the services on an equal basis to everyone else.
The investigation argues for a clear shift in approach – not only to root out unequal treatment but also explicitly to target these very high risk groups for health checks and follow-up treatments. This will prevent the extra costs of serious ill health being passed on to other parts of the National Health System and enable these groups to be healthier and participate fully in society.
The investigation, which took evidence from senior health professionals, policy makers and disabled people themselves, undertook research in four areas (one local health board in Wales and 3 Primary Care Trusts in England) and analysed eight million health records, from the EMIS general practices contributing to the QRESEARCH database - the largest study ever undertaken anywhere in the world. The evidence from primary care records shows that:
• people with mental health problems (schizophrenia, bi-polar disorder or depression) have higher rates of obesity, smoking, heart disease, diabetes, respiratory disease and stroke than other people. Those with bi-polar disorder or schizophrenia also have higher rates of hypertension and breast cancer;
• people with learning disabilities have higher rates of obesity and respiratory disease, and high levels of unmet health needs;
• people with schizophrenia are almost twice as likely as other citizens to have bowel cancer - the second most common cause of cancer death in Britain. This is a completely new finding internationally;
• both people with mental health problems and people with learning disabilities are likely to die younger than other people. People with mental health problems are more than twice as likely as others to get illnesses like strokes and coronary heart disease (CHD) before the age of 55.
Once they have them, they are less likely to survive for 5 years.
The investigation also identified serious weaknesses in addressing these groups’ healthcare needs. It would be expected that more attention from health services would be offered to address these very high levels of health need. In some cases it was, but some important health checks and treatments are provided less often:
• people with learning disabilities who have diabetes have fewer measurements of their body mass index than others with diabetes; those with stroke have fewer blood pressure checks than others with a stroke. They have very low cervical and breast cancer screening rates;
• for people with mental health problems, some tests and standard treatments – such as spirometry to diagnose respiratory illness, or cholesterol checks and the prescriptions of statins for people with heart disease – are given less often than to people without mental health problems.
On the positive side, there was no evidence that mental health patients with serious symptoms such as abnormal bleeding, which could signal cancer, received a worse follow up than other patients. People with learning disabilities and mental health problems also experience ‘diagnostic overshadowing’, that is, reports of physical ill health being viewed as part of the mental health problem or learning disability, and so neither fully investigated nor treated appropriately.
Despite high levels of ill health, over 50% of people with mental health problems and/or people with learning disabilities said they experienced difficulties when trying to see their GP. Key barriers include the attitudes of reception staff, inflexible appointment systems and inaccessible information, including information on the side-effects of psychiatric medication. A small number said that they were not registered or struck off a GPs’ list because they were deemed too demanding.
This lack of access could be easily remedied by GPs by offering simple services such as making appointments by email, providing treatment information in large print on tape or in Easyread.
All of these are legally termed ‘reasonable adjustments’ - to make services more user-friendly for disabled people under the Disability Discrimination Act 1999.
Bert Massie, Chairman of the DRC, said: “This investigation has revealed shocking levels of ill health among people with learning disabilities and people with mental health problems, yet their needs are often unmet or they face unnecessary barriers to accessing services.
“The acid test of a national health service is not whether it works for those who are generally healthy, but whether it benefits those with the greatest risk of poor health. Tackling health inequalities is high on the Government agenda, yet there has been a deeply inadequate response from health services and Government to target these groups which, in some cases, is compounded by a dangerously complacent attitude and a lazy fatalism that they ‘just do’ die younger. This is completely unacceptable. We need to see a radical change in the commissioning, targeting and delivery of health services in order to close this gap quickly.”
While the Formal Investigation identified some impressive examples of good practice in primary care, these services are frequently working in isolation. Despite positive policy and practice developed by mental health and learning disability specialists, the lessons have neither become part of mainstream health programmes – nor part of primary care delivery on the ground.
Many of the health professionals who were interviewed wanted to redress the low levels of treatment currently being offered. However the fragmentation of the policy-making process, together with Government inertia in implementing policy drivers and incentives, have ensured that people with mental health problems and/or learning disabilities are getting unequal treatment from primary care services.
The investigation calls on the Government to make the following urgent improvements to close the gap in healthcare outcomes for disabled people:
• include positive incentives in the GP contract to offer regular health checks for people with learning disabilities and/or mental health problems;
• centrally target these high risk groups in national health inequalities programmes and track progress over time, so that it is known whether poor health and preventable early death are being tackled effectively;
• expect every local health service to analyse the needs of the whole population – including these groups – and make sure that any contracts for health services meet their needs;
• ensure screening programmes are targeted correctly at people with learning disabilities and/or mental health problems;
• the national bowel cancer screening programme should consider offering screening to people with schizophrenia and consider prioritising them in the future;
• ensure that all medical and nursing training explicitly tackles ‘diagnostic over-shadowing’ – ensuring they look for physical health problems, rather than assuming everything is to do with psychiatric problems or a learning disability;
• ensure all policy is subjected to Disability Equality Impact Statements and that tackling poorer health outcomes is part of primary care’s Disability Equality Schemes;
• all GP surgeries and other primary care services should invite disabled people to record their access needs on their medical record, and then meet them;
• governments in England and Wales must produce detailed actions to deliver the DRC’s recommendations, which will be checked for progress by an independent inquiry panel in a year’s time.
The DRC’s Formal Investigation, ‘Equal Treatment: Closing the Gap’, probed the experience of people with mental health problems and/or learning disabilities of primary care services in England and Wales (1) after international research showed that these two groups were at higher risk of serious physical health problems.
From December 2006, the NHS – including Primary Care Trusts in England and Local Health Boards in Wales - will come under the Disability Equality Duty which places them under an obligation to ensure that their policies and practices do not discriminate, and do promote equal opportunities for disabled people. But a wide range of current practices, identified by the investigation, could clearly breach this duty.
The investigation provides important new evidence that people with learning disabilities and people with mental health problems are more likely to experience major illness, to develop serious health conditions at an earlier age and to die of them sooner than other people. Yet they are also less likely to receive some of the important evidence-based treatments and health checks than others with the same condition but without a mental health condition or learning disability. They also face real barriers to accessing services.
In the course of the investigation the DRC encountered complacency and a lazy fatalism that these groups ‘just do’ die younger, or ‘just won’t’ look after their health or attend appointments, often with no efforts in place to make it possible for these groups to use the services on an equal basis to everyone else.
The investigation argues for a clear shift in approach – not only to root out unequal treatment but also explicitly to target these very high risk groups for health checks and follow-up treatments. This will prevent the extra costs of serious ill health being passed on to other parts of the National Health System and enable these groups to be healthier and participate fully in society.
The investigation, which took evidence from senior health professionals, policy makers and disabled people themselves, undertook research in four areas (one local health board in Wales and 3 Primary Care Trusts in England) and analysed eight million health records, from the EMIS general practices contributing to the QRESEARCH database - the largest study ever undertaken anywhere in the world. The evidence from primary care records shows that:
• people with mental health problems (schizophrenia, bi-polar disorder or depression) have higher rates of obesity, smoking, heart disease, diabetes, respiratory disease and stroke than other people. Those with bi-polar disorder or schizophrenia also have higher rates of hypertension and breast cancer;
• people with learning disabilities have higher rates of obesity and respiratory disease, and high levels of unmet health needs;
• people with schizophrenia are almost twice as likely as other citizens to have bowel cancer - the second most common cause of cancer death in Britain. This is a completely new finding internationally;
• both people with mental health problems and people with learning disabilities are likely to die younger than other people. People with mental health problems are more than twice as likely as others to get illnesses like strokes and coronary heart disease (CHD) before the age of 55.
Once they have them, they are less likely to survive for 5 years.
The investigation also identified serious weaknesses in addressing these groups’ healthcare needs. It would be expected that more attention from health services would be offered to address these very high levels of health need. In some cases it was, but some important health checks and treatments are provided less often:
• people with learning disabilities who have diabetes have fewer measurements of their body mass index than others with diabetes; those with stroke have fewer blood pressure checks than others with a stroke. They have very low cervical and breast cancer screening rates;
• for people with mental health problems, some tests and standard treatments – such as spirometry to diagnose respiratory illness, or cholesterol checks and the prescriptions of statins for people with heart disease – are given less often than to people without mental health problems.
On the positive side, there was no evidence that mental health patients with serious symptoms such as abnormal bleeding, which could signal cancer, received a worse follow up than other patients. People with learning disabilities and mental health problems also experience ‘diagnostic overshadowing’, that is, reports of physical ill health being viewed as part of the mental health problem or learning disability, and so neither fully investigated nor treated appropriately.
Despite high levels of ill health, over 50% of people with mental health problems and/or people with learning disabilities said they experienced difficulties when trying to see their GP. Key barriers include the attitudes of reception staff, inflexible appointment systems and inaccessible information, including information on the side-effects of psychiatric medication. A small number said that they were not registered or struck off a GPs’ list because they were deemed too demanding.
This lack of access could be easily remedied by GPs by offering simple services such as making appointments by email, providing treatment information in large print on tape or in Easyread.
All of these are legally termed ‘reasonable adjustments’ - to make services more user-friendly for disabled people under the Disability Discrimination Act 1999.
Bert Massie, Chairman of the DRC, said: “This investigation has revealed shocking levels of ill health among people with learning disabilities and people with mental health problems, yet their needs are often unmet or they face unnecessary barriers to accessing services.
“The acid test of a national health service is not whether it works for those who are generally healthy, but whether it benefits those with the greatest risk of poor health. Tackling health inequalities is high on the Government agenda, yet there has been a deeply inadequate response from health services and Government to target these groups which, in some cases, is compounded by a dangerously complacent attitude and a lazy fatalism that they ‘just do’ die younger. This is completely unacceptable. We need to see a radical change in the commissioning, targeting and delivery of health services in order to close this gap quickly.”
While the Formal Investigation identified some impressive examples of good practice in primary care, these services are frequently working in isolation. Despite positive policy and practice developed by mental health and learning disability specialists, the lessons have neither become part of mainstream health programmes – nor part of primary care delivery on the ground.
Many of the health professionals who were interviewed wanted to redress the low levels of treatment currently being offered. However the fragmentation of the policy-making process, together with Government inertia in implementing policy drivers and incentives, have ensured that people with mental health problems and/or learning disabilities are getting unequal treatment from primary care services.
The investigation calls on the Government to make the following urgent improvements to close the gap in healthcare outcomes for disabled people:
• include positive incentives in the GP contract to offer regular health checks for people with learning disabilities and/or mental health problems;
• centrally target these high risk groups in national health inequalities programmes and track progress over time, so that it is known whether poor health and preventable early death are being tackled effectively;
• expect every local health service to analyse the needs of the whole population – including these groups – and make sure that any contracts for health services meet their needs;
• ensure screening programmes are targeted correctly at people with learning disabilities and/or mental health problems;
• the national bowel cancer screening programme should consider offering screening to people with schizophrenia and consider prioritising them in the future;
• ensure that all medical and nursing training explicitly tackles ‘diagnostic over-shadowing’ – ensuring they look for physical health problems, rather than assuming everything is to do with psychiatric problems or a learning disability;
• ensure all policy is subjected to Disability Equality Impact Statements and that tackling poorer health outcomes is part of primary care’s Disability Equality Schemes;
• all GP surgeries and other primary care services should invite disabled people to record their access needs on their medical record, and then meet them;
• governments in England and Wales must produce detailed actions to deliver the DRC’s recommendations, which will be checked for progress by an independent inquiry panel in a year’s time.
