“…people with disabilities …have the same human rights as the rest of the human race ... This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings … Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities”* 

What is the LeDer report, and what does it say?

The Learning Disabilities Mortality Review (LeDeR) was established to assist local areas in reviewing the deaths of people with learning disabilities in their area, and learning from those deaths in order to improve services. LeDeR’s annual report for 2017 was published on 4 May 2018. The report makes for disconcerting reading, highlighting that people with learning disabilities in the UK ‘die, on average, 15-20 years sooner than people in the general population’. Specific statistics identified in the report include:

  • The proportion of people with learning disabilities who died in hospital was 64%, compared to 47% in the general population;
  • 71% of people with profound or multiple learning disabilities died in hospital compared to 59% of other people with learning disabilities;
  • The median age at death of people with learning disabilities was 58 years;
  • The median age at death of people with profound or multiple learning disabilities was 41 years;
  • In 13% of cases, the person’s health was identified as being adversely affected by delays in care or treatment, gaps in service provision, organisational dysfunction, and/or neglect or abuse.

The report identifies three major learning/recommendation categories which emerged from the reviews. These relate to the need for:

  • Inter-agency collaboration and communication;
  • Awareness of the needs of people with learning disabilities; and
  • Understanding and application of the Mental Capacity Act (MCA).

The LeDeR report makes clear that the inequalities it identifies are not new. In fact, it points out that the issues being raised in the report were raised as early as 2007, in the Death by Indifference report. 

In terms of next steps, the report notes that ‘the importance of addressing the learning from individual deaths cannot be over-estimated’. There is an emphasis on the need to address the report’s findings through targeted training, in relation to disability awareness in general, and also the legislative framework in the MCA.

Human rights implications

The findings of the report raise important human rights issues. Most obviously, they raise the concern that the right to life of people with learning disabilities is not being adequately protected, a fundamental right protected by Article 2 of the UK’s Human Rights Act .

Beyond this, however, the report highlights the fact that although the MCA was intended to put the individual at the centre of decision-making about his/her care and treatment – in line with human rights values – this is often not the reality. The fact that lack of understanding and application of the MCA is identified as a major area for improvement is telling. The report gives one example of a review which found that there were ‘several references to lack of capacity in hospital records but no evidence of a capacity assessment’.

What our work has taught us

At BIHR, we’ve done substantial work on mental health and mental capacity aimed at improving awareness of and confidence to use human rights as a framework for achieving positive change. Our work has emphasised that human rights are about more than just values: they provide a structured framework for decision-making, at the centre of which sits the individual and his/her own needs and views. We have seen that educating practitioners, advocates, and people who use services about human rights is an effective means of achieving better care and treatment.

Our project "Delivering Compassionate Care: Connecting Human Rights to the Frontline" worked with mental health and capacity services in order to build practitioners’ knowledge about human rights, and confidence to use them to deliver compassionate, person-centred care. As part of this project we produced a resource for practitioners on Learning Disability and Human Rights: the resource contains information, worked examples and flowcharts aimed at helping practitioners to structure their decision-making in a way which is rights-respecting.

This project demonstrated that providing staff with practical support to understand and use a human rights approach yields positive results. In one case, a community learning disability nurse was able to challenge hospital staff on their decision to exclude the family of a woman with a learning disability from her best interests meeting, using her right to private and family life (protected by Article 8 in the Human Rights Act). This made a real difference because the woman’s brother, with whom she had a close and trusting relationship, was able to support her.

In another example from the project, a community learning disability nurse said:

“I had a client with learning difficulties who needed an operation. I was able to assist the doctors in thinking through all the human rights implications. I was able to show that it was not just about the right to life, but the broader impact of the procedures and the need to treat the patient in a way that respected her dignity. A human rights approach allowed me to open up a dialogue about how to carry out this operation in a less intrusive and less distressing way for the client.”

We also worked directly with people with learning disabilities and/or autism, families and carers, to create an accessible resource to empower people to make decisions about their own health and care, and to feel confident in challenging disadvantages they face when interacting with services. The resource aims to support people to be active participants in their own care, and understand how they can use human rights to improve their lives without having to go to court.

We believe that educating services and the people who use them about human rights can help to address the inequalities identified in the LeDeR report, by creating a culture in which decisions about care and treatment can be approached in a structured, rights-respecting way. We echo the report’s call for ‘a more proactive approach to meeting the health needs of people with learning disabilities’, requiring ‘targeted action and commitment to improve service delivery’. A human rights approach can help ensure that the person is placed back at the centre of their care and treatment.

 

 

*Baroness Hale, P v Cheshire West & Chester Council & another (2) P & Q v Surrey County Council (2014). You can show your support for universal human rights for everyone by signing our "Celebrating 70" card, marking 70 years of human rights standards, available here.