Hunt promises to investigate claims of mental health trust’s failure over unexpected deathsBMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h6772 (Published 14 December 2015) Cite this as: BMJ 2015;351:h6772
All rapid responses
Why did it take NHS England until December 17th 2016 to publish the Mazars report Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015 ? 1 More importantly what is still causing the 6 year delay in the Health and Social Care information Centre (HSCIC) in facilitating data linkage between the GP learning disability registers, Hospital patient administration systems (PAS) and the Primary Care Mortality Database (PCMD) where all deaths certificate information is held? Since 2010 this data linkage has been repeated requested by CIPOLD Confidential Inquiry into premature deaths of people with learning disabilities, Public Health England Improving Health and Lives Learning Disabilities Observatory and now The Learning Disabilities Mortality Review (LeDeR) Programme. The Mazars report has 7 national recommendations of which the first is “NHS England and its partners should facilitate the use of comparative mortality information relating to Mental Health and Learning Disability service users amongst Mental Health providers”. This is similar to the first of the 18 CIPOLD recommendations “Clear identification of people with learning disabilities on the NHS central registration system and in all health care record systems”. 2 There is a lack of readily available and comparative information on deaths of learning disability service users available to compare Trusts and services. This data linkage would allow the Care Quality Commission (CQC) to benchmark Trusts providing community care for people with learning disabilities and potentially provide preventative action rather than having to respond only when family and friends of people with a learning disability have had to campaign for an investigation after a tragedy. 3,4
1Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015 www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf
2 Heslop P, Blair P, Fleming P, Hoghton M, Marriott A. & Russ L. (2014) The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. The Lancet. 383, 9920, p889–895. www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62026-7/fulltext
3 Independent review into issues that may have contributed to the preventable death of Connor Sparrowhawk . A report for: NHS England, South Region Oxfordshire Safeguarding Adults Board October 2015 www.england.nhs.uk/wp-content/uploads/2015/10/indpndnt-rev-connor-sparro...
4 Death by Indifference. Mencap 2007 www.mencap.org.uk/death-by-indifference
Competing interests: Member of the Steering Group of The Learning Disabilities Mortality Review (LeDeR) Programme
Gareth Lacobucci’s article of 14th December1 detailing the failings of Southern Health NHS Foundation Trust raises issues about how the needs of people with learning disabilities are to be met. The reiteration of government pledges to ensure such shortcomings are rectified is becoming wearisome. Despite several inquiries and investigations, deficiencies have not been addressed or errors corrected. The rhetoric of the government is now to promise ratings on the quality of care offered to people with learning disabilities. Yet such commitments in the past have had little impact.
Over the last 50 years there has been a catalogue of failures to meet the needs of people with learning disabilities. Mencap has documented numerous cases of poor treatment, a number of which led to unnecessary fatalities 2,3,4. Its Death by Indifference3 resulted in the Michael report5 which commissioned the confidential inquiry6 into premature deaths of people with learning disabilities. Both reports identified deficits in the level of care given to people with learning disabilities. Unnecessary suffering and avoidable deaths were often due to shortcomings in the training of staff. Although there is a distinct pathway in nurse education dedicated to learning disability, this is not replicated for medical or allied health professionals, although most will receive some instruction about learning disability. The repeated occurrences of inadequate care indicate that this issue needs revisiting to ensure sufficient training to meet the needs of this client group. This should be extended to social care staff given the ongoing integration of health and social care, and the fact that paid care staff are often the primary carers for people with learning disabilities.
The 2011 BBC Panorama documentary about Winterbourne View7 demonstrated that training was lacking for those working with such a vulnerable clientele and that inpatient services for those needing hospital care was inadequate. Although no-one died at Winterbourne View, this may only have been by good fortune. The events there spurred government to offer assurances that any person with a learning disability who was inappropriately placed would be moved into an appropriate community setting, and that the abuse suffered by these residents would never be repeated. Sadly, these pledges echoed those made 44 years previously following the scandal at Ely hospital in 1967. The similarities between these two institutions were uncanny. In both, complaints from family and staff about ill-treatment of residents by individuals went unheeded; there was a poor environment, lack of leadership and similar patterns of abuse7,8,9,10. Although the Bubb report11 acknowledged what ‘good looks like’ and what commissioning was required to secure good care for those needing inpatient services, its conclusions accepted that it was often difficult for stakeholders to implement changes and too easy to continue with the status quo. Nevertheless changes are now afoot.
Given such evidence, a more concerted effort is necessary to ensure proper treatment of Britain’s most vulnerable patients. It is unacceptable to wait for the headlines to fade and allow practices and attitudes to continue as before. What is required is a fully funded commitment to ensure people with learning disabilities receive the services they need in order to guarantee equal citizenship. Although Ely initiated the end of long-stay hospitals and Winterbourne View hastened their final closures or revision of provision, and Mencap has commenced a review of care for people with learning disabilities, there appears to be little address of the treatment they receive for general health matters. One possible, albeit more controversial, long-term proposal would be to remove responsibility for learning disability from psychiatry and develop a distinct medical specialism. A Royal College of Learning Disability perhaps?
1. Lacobucci, G (2015). Hunt promises to investigate claims of mental health trust’s failure over unexpected deaths, British Medical journal available at: http://static.www.bmj.com/content/351/bmj.h6772 Accessed 31st December 2015
2. Mencap (2012). Death by indifference. 74 deaths and counting: a progress report 5 years on. London: Mencap.
3. Mencap (2007). Death by indifference. London: Mencap.
4. Mencap (2004). Treat me right. London: Mencap.
5. Michael, J. (2008). Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health.
6. Heslop, P., Blair, P., Fleming P, Hoghton, M., Marriott, A. and Russ, L. (2013). Confidential Inquiry into premature deaths of people with learning disabilities. available at http://www.bris.ac.uk/media-library/sites/cipold/migrated/documents/fina... [Accessed 31st December 2015].
7. BBC (2011). Panorama: Winterbourne View documentary. London, BBC.
8. Report of the Committee of Inquiry into Allegations of Ill-Treatment of Patients and other irregularities at the Ely Hospital, Cardiff (1969) Available at:http://www.sochealth.co.uk/resources/national-health-service/democracy-i... Accessed 31stDecember 2015.
9. Flynn, M. (2012). South Gloucestershire Safeguarding Adults Board Winterbourne View Hospital: A Serious case Review Available at http://hosted.southglos.gov.uk/wv/report.pdf [Accessed 31st December 2015].
10. Department of Health (2012). Transforming care: A national response to Winterbourne View Hospital. Department of Health Review: Final Report. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil... [Accessed 31stDecember 2015].
11. Bubb, S. (2014). Winterbourne View. Time for change: Transforming the commissioning of service for people with learning disabilities and autism. Available at: https://www.england.nhs.uk/wp-content/uploads/2014/11/transforming-commi... [Accessed 31st December 2015].
Competing interests: No competing interests