We have known for decades that people with a learning disability experience premature deaths. What will it take to change the status quo, asks Keri-Michѐle Lodge

When my brother, who has a learning disability, was admitted to hospital, I was confident that he would receive the care he needed. I didn’t think that staff would tell me his screams whenever his leg was touched were “behavioural” instead of taking seriously my concerns that he was in pain. Unfortunately, this is the stark reality of healthcare for people with a learning disability, and it’s an experience that was reflected in the findings of the latest Learning Disability Mortality Review (LeDeR), which was published in May.

The LeDeR, which looked into the deaths of people with a learning disability aged 4 years and over between 1 July 2016 and 31 December 2018, was notified of 4302 deaths and reviewed 1081 of them.[1] The median age of death for males with a learning disability was 60 years compared with 83 for men in the general population. While the median age of death for females with a learning disability was 59 years compared with 86 for females in the general population.

The report noted that 15 people had their cause of death recorded as “learning disabilities,” and in 19 cases “learning disabilities” or “Down’s syndrome” was recorded as the rationale for a Do Not Attempt Cardiopulmonary Resuscitation order. Seventy one adults were found to have received care that fell so far short of good practice that it significantly impacted on their wellbeing or directly contributed to their cause of death. In other words, people with a learning disability died sooner than they should have due to failings in the care they received.

What makes these findings even more shocking is that they are nothing new. We have known for decades that people with a learning disability experience a different pattern of mortality to the general population.[2] Numerous subsequent reports have shown that people with a learning disability experience premature deaths, which could have been avoided with adequate healthcare provision.[3][4][5][6][7][8]

This leaves me wondering: what will it take for things to change? The LeDeR report identifies the same contributory factors outlined in reports dating as far back as 2007: lack of awareness of and training around the needs of people with a learning disability, a failure to listen to families/carers, poor understanding and use of the Mental Capacity Act (MCA) 2005, delays in diagnosis, inadequate interagency collaboration, and limited use of reasonable adjustments.[1][3][4][5][6][7][8]

Public services in England, including the NHS, are legally required to adjust their services so that they’re accessible to people with disabilities.[9][10]  For people with a learning disability, this might translate to being given extra time in consultations, accessible information, or liaising with specialist staff who have expertise in learning disabilities.[11] Yet the NHS does not routinely offer these. A recent study identified that poor awareness of reasonable adjustments among healthcare staff, a lack of accountability around their implementation, and insufficient funding were all barriers to these adjustments being rolled out. [12]

The failure to provide reasonable adjustments can result in delays in diagnosis and treatment.  Examination, investigations, and treatment can also be hindered if health professionals have a poor understanding of mental capacity; for example, misunderstanding an anxious person with a learning disability’s reluctance to cooperate as a valid refusal to consent.[13]

Further delays can also result from diagnostic overshadowing: interpreting symptoms of illness as a manifestation of a person’s learning disability—as in my brother’s case. Identifying pain and symptoms of health problems in people with a learning disability can be challenging, particularly for time pressured staff who are inexperienced in communicating with people with a learning disability. Indeed, a recent YouGov poll of 506 healthcare professionals found that 23% had never received training on how to meet the needs of patients with a learning disability.[14]Freedom of information requests have also found that of the 118 NHS foundation trusts who responded (out of 157), 47% did not include information about learning disability in their induction training. And among English medical schools (63 universities responded out of 72), 22% did not cover reasonable adjustments for people with a learning disability in their curriculum.[14]

Some promising steps have emerged recently among this rather bleak portrait. The government has launched a consultation on introducing mandatory training for all healthcare staff in learning disability and autism awareness.[15] A number of other initiatives have also been announced, including better recording of reasonable adjustments in patient care records; a greater focus on the application of the MCA in practice by Care Quality Commission inspectors; and plans for NHS England to publish care pathways on the prevention, identification, and early treatment of dysphagia, sepsis, constipation, and epilepsy in people with a learning disability.[1]

As an immediate response to the LeDeR report, the national medical director of NHS England and NHS Improvement has written to all NHS trusts and clinical commissioning groups making it clear that “learning disabilities” should never be an acceptable rationale for a Do Not Attempt Cardiopulmonary Resuscitation order, nor should it be used to describe the underlying or only cause of death on a patient’s medical certificate.  

The NHS Long Term Plan enshrines the health service’s commitment to do more to ensure people with a learning disability live healthier and longer lives,[16] yet system level promises alone are not enough. Change is needed at an individual level. We each know what we ought to be doing to improve healthcare for people with a learning disability, but we’re not doing it. To understand why not, we need to reflect on our own unconscious bias: is our background, personal experience, or learnt societal stereotypes impacting on our actions and decisions about people with a learning disability without us realising?  

To challenge our ingrained assumptions about what life is like for someone with a learning disability, healthcare staff need to listen to people with a learning disability and their families and learn from their expertise by experience. We need to work together as equals to co-produce and co-deliver training that is focused not only on how to meet the healthcare needs of people with a learning disability, but crucially on emphasising how even someone with complex needs can lead a fulfilling life.

We must no longer accept the status quo: having a learning disability should not mean that you are at risk of an early avoidable death because of poor healthcare provision. By addressing our prejudices and changing our own practice, we can ensure that individuals with a learning disability, like my brother, receive the same effective, safe, compassionate, and dignified healthcare as everybody else.  

Keri-Michѐle Lodge is a specialty registrar in the psychiatry of intellectual disability in Yorkshire and The Humber, and a sibling carer for her brother.  

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.

References

[1]  The Learning Disability Mortality Review (LeDeR) Programme. Annual Report, 2018. University of Bristol, 2019. http://www.bristol.ac.uk/sps/leder/resources/annual-reports/

[2]  Hollins S, Attard MT, 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(1):50-6. https://www.ncbi.nlm.nih.gov/pubmed/9459217

[3]  Mencap. Death by Indifference. Mencap, 2007. https://www.mencap.org.uk/ sites/default/files/2016-06/DBIreport.pdf 

[4]  Michael J. Healthcare for all: Report of the Independent Inquiry into access to healthcare for people with learning disabilities. Department of Health, 2008. https://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_106126.pdf

[5]  Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. The Confidential Inquiry into premature deaths of people with learning disabilities. University of Bristol, 2013. https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf

[6]  Mazars. 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. 16 December 2015. https://www.england.nhs. uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf

[7]  Glover G, Williams R, Heslop P, Oyinola J, Grey J. Mortality in people with intellectual disabilities in England. Journal of Intellectual Disability Research 2017; 61 (1): 62-74. https://www.ncbi.nlm.nih.gov/pubmed/27489075

[8]  Department of Health. Six Lives progress report. London: Department of Health, 2010. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216180/dh_120494.pdf 

[9] HMSO. Disability Discrimination Act 2005. London: HMSO, 2005.

[10]  HMSO. Equality Act 2010. London: HMSO, 2010.

[11]  Hollins S, Tuffrey-Wijne I. Meeting the needs of patients with learning disabilities.  BMJ 2013;346:f3421 https://www.bmj.com/content/346/bmj.f3421

[12]  Tuffrey-Wijne I, Goulding L, Giatras N, et al. The barriers to and 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. https://bmjopen.bmj.com/content/4/4/e004606

[13]  Lodge K. Communicating with people with learning disabilities. Student BMJ 2005;330:0506254 https://www.bmj.com/content/330/Suppl_S6/0506254

[14] Mencap. Concerns over lack of clinical training causing avoidable learning disability deaths. 15 February 2018. https://www.mencap.org.uk/press-release/concerns-over-lack-clinical-training-causing-avoidable-learning-disability-deaths

[15]  Department of Health and Social Care. Learning disability and autism training for health and care staff. 12 April 2019. https://www.gov.uk/government/consultations/learning-disability-and-autism-training-for-health-and-care-staff

[16]  NHS Long Term Plan. Chapter 2. Stronger NHS action on health inequalities.  https://www.longtermplan.nhs.uk/online-version/chapter-2-more-nhs-action-on-prevention-and-health-inequalities/stronger-nhs-action-on-health-inequalities/