Including people with intellectual disabilities in mainstream health services : Government policy in England since 2001

Sue Turner (UK)

This article, revised in 2017, highlights the key areas and policy documents which have been published since the White Paper Valuing People (2001) and the follow-up document Valuing People Now (2009), whose aims were to promote better health outcomes for people with intellectual disabilities. It further updates the information provided in Government Policy in England: Inclusion in Mainstream Healthcare, 2001 - 2006. There are heartening examples of good practice in health services, but these need to be replicated across all services to make a real difference to the lives of people with intellectual disabilities and their families.

Introduction

People with intellectual disabilities die younger and experience poorer health compared to the general population.  Some of these differences in health status are avoidable or the impact of health conditions can be minimised, meaning that people with intellectual disabilities experience health inequalities that public services have a duty to address (Emerson et al 2012). Many of the determinants or reasons for health inequalities sit outside health service responsibilities, for example the impact of poverty, unemployment and poor housing. However the focus of this article is on policy relating to health services, and their responsibilities regarding the care they provide to people with intellectual disabilities.

Current policy

The White Paper Valuing People (2001) and the subsequent document Valuing People Now (2009) set the overall policy context for the commissioning of services for people with intellectual disabilities. Valuing People Now is no longer current; however, much within the document remains relevant, including the four key principles on which it was based:

·         rights

·         independent living

·         control

·         inclusion

Valuing People Now contains the Government’s response to Healthcare for All (Sir Jonathan Michael 2008), the report of the independent inquiry commissioned by the then Secretary of State for Health, following Mencap’s report Death by Indifference (2007) which detailed the cases of six people with intellectual disabilities who died while in the care of the NHS. The inquiry found that people with intellectual disabilities were often invisible in the system and received “less effective care than they are entitled to receive”. Ten recommendations were made to address these inequalities. Healthcare for All follows a number of previous reports setting out shortcomings in access to, and quality of, both specialist and mainstream health services for people with intellectual disabilities.  These include the Healthcare Commission’s investigations into service failings in Cornwall (2006) and Sutton and Merton (2007) and the formal inquiry by the Disability Rights Commission (2006).

The recommendations in Healthcare for All included the establishment of a Public Health Observatory to address the lack of information and data about health and people with intellectual disabilities, and a time-limited Confidential Inquiry into premature deaths in people with intellectual disabilities.

The Confidential Inquiry reported in spring 2013 (Heslop et al 2013). Forty-two per cent of the deaths reviewed were found to be premature, meaning that had things been different, the person could have been expected to live for at least another year. The inquiry found that the quality of health and social care for people with intellectual disabilities was deficient, and many professionals did not put reasonable adjustments in place to meet people’s needs. Issues identified included difficulties or delay in diagnosis, problems with treatment and coordination of care and failure to adhere to the Mental Capacity Act. The Confidential Inquiry made 18 recommendations including the need for a National Learning Disability Mortality Review Body.

In June 2015, the Learning Disability Mortality Review (LeDeR) programme commenced, initially for three years. The programme developed a review process and is supporting local areas with implementation. Anonymised information about the deaths of people with intellectual disabilities is being collated and shared so that common themes, learning points and recommendations can be identified and taken forward into policy and practice improvements. The programme includes a number of additional projects:

• Finding out more about the age and cause of death of people with intellectual disabilities in England by linking different data sets
• Finding out more about the provision of ‘reasonable adjustments’ for people with intellectual disabilities
• Providing better guidance so that the cause of death written on death certificates of people with intellectual disabilities is recorded in a consistent manner
• Establishing a collection of reports about people with intellectual disabilities from which we can learn more about commonly occurring problems.

For further information see: http://www.bristol.ac.uk/sps/leder/

The Learning Disabilities Public Health Observatory, initially called IHaL (Improving Health and Lives) was set up in 2010, and in 2013 became part of Public Health England (PHE). The Observatory works to get better data and information about the health of people with intellectual disabilities, and aims to make this available to a range of audiences. The Observatory had a website that has been archived due to the move to PHE: http://webarchive.nationalarchives.gov.uk/20160704145615/http://www.improvinghealthandlives.org.uk/index.php

Information is now available on a range of sites including:

https://khub.net/group/phe-learning-disabilities-observatory-ihal-/group-home

https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england-2015

http://fingertips.phe.org.uk/profile/learning-disabilities

Among other things, the Observatory reports on health checks, an initiative that was put in place to improve access to mainstream health services for people with intellectual disabilities. Health checks were introduced by the Department of Health in 2008 in response to recommendations in the Disability Rights Commission inquiry and Healthcare for All. There is clear evidence that health checks detect unmet health needs, and they are considered to be an important reasonable adjustment that primary care services can make to address health inequalities.  Since April 2014 eligibility for health checks has been extended to young people with intellectual disabilities aged 14 and over, and participating practices are required to produce a health action plan linked to each person’s health check. The number of people with intellectual disabilities receiving a health check has gone up every year although direct comparisons with previous years are difficult because the data collection processes and eligible age group have changed. Data shows that 52% of eligible patients had an annual health check in 2014/15. The proportion of GP practices participating in the Enhanced Service has increased also, but substantial variation across the country remains (Public Health England 2017).

NHS England and NHS Improvement have now set a target for GPs and Clinical Commissioning Groups (CCGs) to improve access to healthcare for people with learning disability so that by 2020, 75% of people on a GP Learning Disability register in England will be receiving an annual health check (NHS England 2016).

While in some areas there have been improvements, in February 2012 Mencap published Death by indifference: 74 deaths and counting which noted that there were still major problems with use of the Mental Capacity Act, poor complaints procedures, failure to recognise pain, delays in diagnosis and treatment, poor communication and lack of basic care. It should be noted that this report followed a response on the individual cases in Death by Indifference, called the Six Lives report, by the Parliamentary and Health Service Ombudsman and Local Government Ombudsman (2009). This recommended that all NHS and social care organisations should urgently review the effectiveness of their systems – and their capacity/capability – for understanding and meeting the additional and often complex needs of people with intellectual disabilities, and report to their Boards by March 2010 on actions taken.  However, the first Six Lives progress report, published in October 2010, showed that progress often relied on individual staff or local groups, and was not embedded.  The report set out five key priorities for health services to focus on:

• Training for mainstream staff – particularly making reasonable adjustments and improving communication;

• Annual health checks – improving quality and the number of people getting them;

• Capacity and consent – making sure the law is followed;

• Advocacy – support to people to make choices and speak up when they are not happy;

• Complaints procedures – more accessible, quicker and with transparent outcomes.

The second Six Lives progress report was published in July 2013. This noted that there were still problems with delays in diagnosis, care and treatment, poor quality health checks, inaccessibility or a lack of communication and information, failure to recognise or treat pain and failure to involve people in decisions about their care. The issues raised in these reports are echoed in the findings of the Confidential Inquiry described above.

In addition to the above reports, since 2011 the Monitor Risk Assessment Framework has used the recommendations in Healthcare for All to ask whether NHS Foundation Trusts:

• have a mechanism in place to identify and flag patients with intellectual disabilities and protocols that ensure that pathways of care are reasonably adjusted;

• provide readily available and comprehensible information to patients with intellectual disabilities;

• have protocols in place to provide suitable support for family carers who support patients with intellectual disabilities;

• have protocols in place routinely to include training on providing health care to patients with intellectual disabilities for all staff;

• have protocols in place to encourage representation of people with intellectual disabilities and their family carers;

• have protocols in place to regularly audit its practices for patients with intellectual disabilities and to demonstrate the findings in routine public reports.

Although these questions are asked of Foundation Trusts, it is not clear whether evidence to back up these statements is routinely asked for or checked.

The recommendations in Healthcare for All have also been used as the basis for research into the factors that promote or compromise a safe environment for people with intellectual disabilities in hospital (Tuffrey-Wijne et al 2013). The study found examples of good practice in the six hospitals that took part, but good practice was patchy. Problems included delays or omissions in care, including basic nursing care, and delays or omissions regarding treatment.  People with intellectual disabilities were still largely invisible in the system and information was often not passed on at the point of referral. Staff did not understand about reasonable adjustments or how to care for people with intellectual disabilities. Their understanding of the Mental Capacity Act was poor. Carers were not always valued or listened to, and assumptions were made about their role in caring for the person. Lines of responsibility and accountability were also unclear.

Having an acute liaison nurse in post was a particularly effective way of improving care in some areas, but acute liaison nurses need the support of senior management and the authority to change care pathways in order to maximise their impact. Other strategies that helped included patient-held records, policies to support carers, staff training, and having people with intellectual disabilities and family carers on advisory bodies. The researchers conclude that policies and strategies did not ‘reliably translate to better practice in the clinical areas’. They suggest that nationally integrated systems for sharing information about the person’s intellectual disability along with effective flagging systems may help. This recommendation was also in Healthcare for All and the Confidential Inquiry reports. They recommend a clear way of allocating responsibility and accountability for co-ordinating care for people with intellectual disabilities along with appropriate access to learning disability expertise, and the implementation of protocols for shared care agreed with the carer.

More recently intellectual disability policy has focused on the Transforming Care agenda regarding improving services for people with intellectual disabilities and/or autism, who display behaviour that challenges, including those with a mental health condition.   Building the Right Support (LGA, ADASS and NHSE 2015 ¹⁾ and accompanying Service Model (LGA, ADASS and NHSE 2015 ²) include a specific section on getting support from mainstream health care including a health check, health action plan and hospital passport.

Conclusions

Numerous reports have been written about the poor health care people with intellectual disabilities experience. All these reports identify similar problems and issues, and the same recommendations appear with depressing regularity. Since Valuing People Now, mainstream health policy has made some attempt to address these issues, but much more needs to be done to ensure that there are robust structures within hospitals and health services generally so that people with intellectual disabilities receive the care to which they are entitled. There are two main problems; firstly policy is not consistently implemented. The recent House of Lords select committee undertaking post-legislative scrutiny of the Mental Capacity Act concluded that it is a visionary piece of legislation but “the empowering ethos has not been delivered. The rights conferred by the Act have not been widely realised” (House of Lords, 214, p 6). Secondly, many of the recommendations in these reports are not picked up by policy or health services at all. For example, research demonstrates that acute liaison nurses, embedded in hospitals with senior level support, do improve care for people with intellectual disabilities, but not all hospitals have one. There are some excellent examples of good practice regarding reasonably adjusted health services for people with intellectual disabilities, but this needs to become common practice. Reasonable adjustments are, after all, a legal requirement. The benefits of a culture of reasonably adjusted, person centred services, are likely to be felt, not just by patients with an intellectual disability, but by all.

References

Department of Health (2001) Valuing People: A New Strategy for the 21st Century. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf

Department of Health (2009) Valuing People Now. A new three year strategy for people with learning disabilities – Making it happen for everyone. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_093375.pdf

Department of Health (2010) Six Lives Progress Report. www.gov.uk/government/uploads/system/uploads/attachment_data/file/216180/dh_120494.pdf

Department of Health (2013) Six Lives: Progress Report on Healthcare for People with Learning Disabilities. www.gov.uk/government/uploads/system/uploads/attachment_data/file/212292/Six_lives_2nd_Progress_Report_on_Healthcare_for_People_with_Learning_Disabilities_-_full_report.pdf

Disability Rights Commission (2006). Equal Treatment: Closing the Gap: http://disability-studies.leeds.ac.uk/files/library/DRC-Health-FI-main.pdf

Emerson et al (2012) Health Inequalities and People with Learning Disabilities in the UK: 2012. Improving Health and Lives Learning Disabilities Public Health Observatory: http://webarchive.nationalarchives.gov.uk/20160704171248/http://www.improvinghealthandlives.org.uk/publications/1165/Health_Inequalities_&_People_with_Learning_Disabilities_in_the_UK:_2012

Healthcare Commission and Commission for Social Care Inspection (2006). Joint investigation into the provision of services for people with learning disabilities at Cornwall Partnership NHS Trust: http://webarchive.nationalarchives.gov.uk/20060502043818/http:/healthcarecommission.org.uk/_db/_documents/cornwall_investigation_report.pdf

Healthcare Commission (2007). Investigation into the service for people with learning disabilities provided by Sutton and Merton Primary Care Trust: http://webarchive.nationalarchives.gov.uk/20060502043818/http://healthcarecommission.org.uk/_db/_documents/Sutton_and_Merton_inv_Main_Tag.pdf

Heslop et al (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Final report : www.bristol.ac.uk/cipold/

House of Lords Select Committee on the Mental Capacity Act 2005 (2014). Mental Capacity Act 2005: Post-legislative scrutiny. The Stationery Office Limited, London: https://publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/139.pdf

LGA, ADASS & NHSE (2015)¹. Building the Right Support. National Plan: https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf

LGA, ADASS & NHSE (2015)² Building the Right Support. Service Model: https://www.england.nhs.uk/wp-content/uploads/2015/10/service-model-291015.pdf

Mencap (2007). Death by Indifference: https://www.mencap.org.uk/sites/default/files/2016-06/DBIreport.pdf

Mencap (2012). Death by Indifference. 74 deaths and counting. A progress report 5 years on: https://www.mencap.org.uk/sites/default/files/2016-08/Death%20by%20Indifference%20-%2074%20deaths%20and%20counting.pdf

NHS England (2016) CCG improvement and assessment framework 2016/17: https://www.england.nhs.uk/wp-content/uploads/2017/07/ccg-iaf-mar16.pdf

Sir Jonathan Michael (2008). Healthcare for All: Independent Inquiry into Access to Healthcare for People with Learning Disabilities

Monitor (2015). Risk Assessment Framework 2015

Parliamentary and Health Service Ombudsman and Local Government Ombudsman (2009). Six Lives: The provision of public services to people with learning disabilities.

PHE Learning Disabilities Observatory (2017) The uptake of learning disability health checks 2014 to 2015

Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L, Edwards C, et al. Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. Health Serv Deliv Res 2013; 1(13).

This article was first published on this site in 2014, and revised in August 2017.