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Preventing ‘deaths by indifference’: identification of reasonable adjustments is key

  • Irene Tuffrey-Wijne and Sheila Hollins
Summary

People with intellectual disabilities are at risk of premature death due to failings in healthcare provision. To prevent this, it is important for healthcare services to identify and flag not only vulnerable conditions (including intellectual disability, dementia and mental health problems), but also the specific adjustments needed by individual patients.

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Copyright
Corresponding author
Professor the Baroness Hollins, 4.09, 1 Millbank, London SW1A 0PW, UK. Email: hollinss@parliament.uk
Footnotes
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Declaration of interest

None.

Footnotes
References
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1 Emerson, E, Hatton, C. People with Learning Disabilities in England. Public Health England, 2008
2 Mencap. Death by Indifference. Mencap, 2007.
3 Michael, J. Healthcare for All. Aldridge Press, 2008.
4 Emerson, E, Baines, S, Allerton, L, Welch, V. Health Inequalities and People with Learning Disabilities in the UK: 2012. Public Health England, 2012.
5 Heslop, P, Blair, P, Fleming, P, Hoghton, M, Marriott, A, Russ, L. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 2014; 383: 889–95.
6 Hollins, S, Attard, M, von Fraunhofer, N, McGuigan, S, Sedgwick, P. Mortality in people with learning disability: risks, causes, and death certification findings in London. Dev Med Child Neurol 1998; 40: 50–6.
7 Hatton, C, Roberts, H, Bain, S. Reasonable Adjustments for People with Learning Disabilities in England: A National Survey of NHS Trusts. Public Health England, 2010.
8 Glover, G, Emerson, E. Have you got a Learning Disability? Public Health England, 2011.
9 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. National Institute for Health Research, 2013.
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The British Journal of Psychiatry
  • ISSN: 0007-1250
  • EISSN: 1472-1465
  • URL: /core/journals/the-british-journal-of-psychiatry
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Preventing ‘deaths by indifference’: identification of reasonable adjustments is key

  • Irene Tuffrey-Wijne and Sheila Hollins
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eLetters

Identifying and Adjusting for Intellectual Disability in Prisoners : What is reasonable?

Annie Bartlett, Reader and Honorary Consultant in Forensic Psychiatry
19 September 2014

We read, with interest, Hollins' and Tuffrey-Wynne's editorial (2014) and would like to reflect on the public sector duty to make reasonable adjustments for individuals with Intellectual Disability in prisons.Five years ago, the Bradley report (2009) highlighted the plight of individuals with learning difficulties who came into contact with the criminal justice system. To date, despite considerable effort, data on theprevalence of ID in the UK prison population continues to be inconsistent,with widely varying levels of ID being reported (Lindsay, 2011). As a consequence, uncertainty about the level of overall need exists. Hollins and Tuffrey-Wynne (2014) argue that service adjustments should be made in the light of individual need. More interestingly and in line with the widening international discussion on the concept of disability (WHO and World Bank, 2011), they suggest that clear identification of the ID may not be necessary. This rejection of the need for firm diagnosis seems in part a pragmatic response to the reality that practitioners find it hard to identify ID. ID diagnosis may not be necessary in order to meet individual need but we are concerned that the absence of a recognised ID screening process on entry to prison renders the (unidentified) person with ID potentially vulnerable. Some form of identification of their needs is important. A detailed approach to identifying need is not always possible in a busy prison environment. More positively, if staff are able to deal with individuals flagged as "possibly ID" there may achievable gains. For some,flagging someone as 'possibly ID' may be the only reasonable adjustment that can be made given a short period in custody. It is clear from our recent prison health care initiatives (Galloway et al., in press) that ID screening, whether preliminary (needs based) or definitively diagnostic, can expedite proper care planning, including "reasonable adjustments" to negotiate life in prison safely and successfully. Needs identification mayhave some advantage over more abstract screening. It allows all staff to provide assistance relevant to daily life in prison e.g. reading letters from lawyers, anticipates vulnerability to exploitation over goods and finance, supports access to appropriate leisure activities and education and ensures contact with family and friends. Additionally, it creates an opportunity for this person-centred information, to inform an appropriate rehabilitation and care pathway when they leave prison e.g. additional "through the gate" support for housing.This depends on such reasonable adjustments, required for people with disabilities by the Equality Act (2010), to be feasible and available. In fact, few adapted offending behaviour programmes exist in the prison estate (Talbot, 2007), compromising release for some sentenced ID offenders.The lack of national standardisation of ID identification and adjustment within the CJS, both in prison and at other points along the criminal justice pathway, needs to be addressed. NICE and the Royal College of Psychiatrists are developing prison health standards. Both could usefully consider this service deficit, to establish consistent ID screening. Consistent provision of reasonable adjustments necessarily relies on this being in place.

ReferencesBradley, K. (2009). Lord Bradley's review of people with mental health problems and learning disabilities in the criminal justice system London: Department of Health. DOI: 294278.

Galloway, S., Ali, S., Barber, S., Bath, C., French., M. (in press). People with Intellectual and Developmental Disabilities in the Criminal Justice System. In Lindsay, W. & Taylor, J.L. (Eds.), The Wiley Handbook on Offenders with Intellectual and Developmental Disabilities. Wiley-Blackwell: UK.

Lindsay, W.R. (2011). People with intellectual disability who offend or are involved with the criminal justice system. Current Opinion in Psychiatry. 24(5). pp. 377-381.

Talbot, J. (2007). Identifying and supporting prisoners with learningdifficulties and learning disabilities: the view of prison staff. London: Prison Reform Trust.

Tuffrey- Wijne, I. & Hollins, S (2014). Preventing 'deaths by indifference': identification of reasonable adjustments is key. The British Journal of Psychiatry, 205 (2), 86-87.

World Health Organisation and World Bank (2011) World Report on Disability. http://www.who.int/disabilities/world_report/2011/en/ (accessed 16.09.14)

Annie BartlettReader and Honorary Consultant in Forensic PsychiatrySGUL and CNWL FTCranmer Terrace London SW170RE

Salma AliCNWL Learning Disability Service LineThe Kingswood CentreLondonNW9 9QY

Thomas Board Medical Student St George's University of LondonCranmer Terrace London SW17ORE

Scott Galloway CNWL Learning Disability Service LineThe Kingswood CentreLondonNW9 9QY

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Conflict of interest: AB is Clinical Director of Offender Care in CNWL FT which provides a range of health care services to individuals in prison or in contact with the criminal justice system in London and the South East. SG and SA are involved in the assessment and management of individuals with Intellectual Disability in contact with the Criminal Justice System in the London area.

Write a reply

Reasonable adjustments are key to safety, effectiveness and patient experience

Pauline Heslop, Reader in Intellectual Disabilities Research
15 August 2014

We support the views of Tuffrey-Wijne and Hollins (Preventing 'deathsby indifference: identification of reasonable adjustments is key) and their argument for the NHS to take an organisational approach to embed documentation and provision of reasonable adjustments for those with 'protected' characteristics under the Equalities Act 2010.

Lord Darzi (Department of Health 2008) defined quality for the NHS ascomprising three dimensions: safety, effectiveness and patient-experience.The provision of reasonable adjustments is central to each of these dimensions.

Safety: Tuffrey Wijne and Hollins rightly identify the lack of provision of reasonable adjustments as being a patient safety issue. The Confidential Inquiry into premature deaths of people with intellectual disabilities (CIPOLD) demonstrated an underlying culture in which people with intellectual disabilities were disadvantaged in accessing equitable healthcare and at risk of premature death because equality for disabled people was assumed to mean treating them the same as others. It does not. Alternative methods of making services available have to be found in orderto achieve equality of outcomes. Mizen et al. (2012) for example demonstrated that clinical guidelines can actually increase health inequalities for people with intellectual disabilities if reasonable adjustments are not made. If the lack of reasonable adjustments threatens to compromise safety, as, in very many cases it does for people with intellectual disabilities, this needs to be reported and reviewed as a patient safety issue.

Effectiveness: The evidence from Tuffrey Wijne et al. (2014) suggeststhat ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. Effective care is that which is tailored to the needs of the patient, and this must involve an understanding of the adjustments they need in order to be able to receive appropriate medical and nursing care. In our view, we should go further than Tuffrey Wijne and Hollins' requirement for Care Quality Commission inspections in England and Wales to oversee patient-specific recording of reasonable adjustments. We also need to be confidentthat such adjustments are being delivered, and for evidence to be providedof adequate arrangements being in place.

Patient-experience: Turner and Robinson (2011) note that it is difficult for people with intellectual disabilities and their families to influence policy and practice in healthcare systems if they are not visible within it, and if involvement mechanisms such as surveys and focusgroups are not accessible to them. Both 'Death by Indifference' (Mencap 2007) and the CIPOLD reports highlighted the lack of attention paid to theviews of patients and their families preventing them from becoming active partners in their care; the CIPOLD report additionally noted the devastating impact on future care that a poor experience of healthcare canhave for some people with intellectual disabilities. The provision of reasonable adjustments needs to extend to the ways in which we garner the views of people with intellectual disabilities, communicate with them, andplace them at the centre of their care.

The Confidential Inquiry into premature deaths of people with intellectual disabilities (CIPOLD) made 18 recommendations which included 1. Clear identification of people with intellectual disabilities on the NHS central registration system and in all health care records.2. Reasonable Adjustments required by, and provided to, individuals, to beaudited annually and examples of best practice to be shared across agencies and organisations.

It is now 4 years since the Equalities Act (2010) came into force. Our adherence to the Act must be sharpened in the light of the health inequalities faced by people with protected characteristics, including those with intellectual disabilities, so clearly demonstrated in successive reports. We all have a responsibility, and we all have a role to play in ensuring equal outcomes for vulnerable people through the provision of reasonable adjustments, but strong leadership in doing so is central to make it happen.

References:Department of Health (2008) High Quality Care For All, Next Stage Review Final Report. Cm 7432, 30 June 2008.

Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. (2014) The Confidential Inquiry into premature deaths of people with intellectualdisabilities in the UK: a population-based study. Lancet 2014; 383: 889-95.

Mizen L, Macfie M, Findlay L, Cooper S, Melviille C et al. (2012) Clinical guidelines contribute to the health inequities experienced by individuals with intellectual disabilities. Implementation Science 7:42.

Tuffrey-Wijne I, Goulding L, Giatras N, et al. (2014) The barriers toand enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open 2014;4:e004606.

Turner S. and Robinson C. (2011) Reasonable Adjustments for people with learning disabilities - Implications and actions for commissioners and providers of healthcare. Improving Health and Lives Learning Disabilities Observatory. http://www.ndti.org.uk/uploads/files/IHAL_2011_-01_Reasonable_adjustments_guidance.pdf

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Conflict of interest: None declared

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