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Promoting the human rights of people with learning disabilities

Martin Bollard
Senior Lecturer (Learning Disabilities)
Coventry University

People with learning disabilities are more likely to use health services throughout their lives due to serious health conditions that occur more frequently in this population, such as coronary heart disease, respiratory disorders, mental ill health and hearing and sight difficulties along with other congenital disorders.

The length of engagement with the health service that these conditions require means that, while it is a fairly small population, people with learning disabilities must be included in the personalisation agenda to ensure that they get access to the best services and the best treatments needed.

A number of reports published over the last two years have highlighted concerns that people with learning disabilities are experiencing inequalities in healthcare, which can be attributed to discriminatory attitudes and approaches across the health service in general. This has led to situations where individuals' health needs were left undetected and unresolved and, in a few cases, neglect from health practitioners resulted in unnecessary deaths.

The independent report commissioned by the Department of Health, Healthcare for All, identified these initial concerns, while the Joint Committee on Human Rights report, A Life Like Any Other, found that a range of services were depriving people with learning disabilities of their basic human rights.1,2 One example of the instances identified in the report showed that an adult with learning disabilities was deprived of food for 26 days, having been admitted for a stroke. Whether this was due to lack of communication or maladministration, it is certain that this should not be happening in the NHS today.

Human rights
It may seem extreme to call instances like this a violation of human rights, a term usually associate with tortured prisoners or ritually abused women, but this is exactly what is occurring. "Human rights" refers to the basic rights and freedoms to which all human beings are entitled, and the denial of food or basic healthcare, for whatever reason, is therefore a breach of these rights. To protect the most vulnerable people in society it is imperative that their human rights are not taken away from them.

The nurse's role
Nurses at the frontline of the health service are ideally placed to enforce these rights and ensure that all patients have access to the best service available to them. As the treatment of people with learning disabilities in the UK is highlighted in the media, nurses need to ensure that they have a thorough awareness and understanding of the issues to inform their day-to-day practice.

It is important to look at the personalisation and choice agenda and what it means for people with learning disabilities. The choice agenda is more problematic for vulnerable groups of people who do not have a good understanding of their own health needs and the options available to them. People with learning disabilities will need more guidance and advice about how the health service works and what they need to do to access the services available.

A key role for health practitioners working in a general field is to be aware of specialist services so that they can recognise when, and to whom, patients should be referred. Due to the specific health conditions associated with learning disabilities, health professionals should liaise with specialist services where appropriate to ease referral.

Nurses are often the first point of contact with health and social services for people with learning disabilities and their families, and by developing practice based on an increased awareness of the needs of people with learning disabilities, nurses can influence the continuing experience of individuals within the health service.

The first thing to note is to recognise and act on distress presented by individuals, as well as identify unmet physical need. People with learning disabilities may find it harder to communicate effectively with health professionals, so practitioners need to look beyond their immediate assumptions. By identifying unmet physical need, the practitioner can then adapt their approach of continuing treatment to best suit the physical needs and barriers to that individual.

To address the maltreatment of people with learning disabilities in the health service, practitioners do not need to overhaul their ways of working; instead, heightened awareness of issues and small adjustments to working practice to suit the individual will make all the difference. For example, establishing a clear means of communication, either through the individual themselves or through a carer or family member via a communication passport, can reduce the element of misunderstanding on both sides of the relationship later on.

Finally, nurses should remain aware that vulnerable people, like those with learning disabilities, can be more susceptible to neglect and abuse from authority figures. While family members and patients may find it difficult to challenge any concerns or suspicions they may have about occurrences of neglect or abuse, practitioners must raise concerns as and when appropriate. It is important to do this as soon as possible so that they can be dealt with efficiently, without fear of reprisals. Not all health professionals who are working in mainstream healthcare will be familiar with the specific health, physical and social needs of people with learning disabilities and raising concerns, rather than being accusatory, should help to raise awareness of the issue and improve practice across the health service.

1. Michael J. Healthcare for All. London: Department of Health; 2008.
2. House of Lords/House of Commons Joint Committee on Human Rights. A Life Like Any Other? Human Rights of Adults with Learning Difficulties. London: The Stationery Office; 2008.

Your comments (terms and conditions apply):

"A search can be done to find people with LD in the practice and practice nurses can be vigilant is ensuring that they have their entitled checks. There is an easy to read DH 'Having a smear' pamphlet to send out with smear requests. I have a brother age 47 with profound LD so have an activist spirit to strive to look after him and those like him well. He is soon to move to a new residential bungalow and will require a new GP. I have asked if I can take him for a new patient check so that I can raise his profile and that he is met as a person and not just known by the heavy set of paper archived notes. How many like him have elderly parents, no siblings and depend on good-quality care and activism for their needs to be met" - Barbara Oldham