A place of greater safety? Risk and people with learning disabilities

A place of greater safety? Risk and people with learning disabilities

In this blog I want to think about how risk assessments in specialist learning disability services embody a very partial understanding of risk, particularly when set alongside public health ways of thinking about risk. I also want to go through what I think some of the consequences are for people with learning disabilities, and how we might get a more balanced approach to understanding risk. Why is this blog called ‘A place of greater safety?’ – well, I’ll tell you later.

Many people have (rightly) argued that a greater degree of ‘risk’ is necessary for people with learning disabilities to lead more fulfilling lives, and that ‘risk’ is a fundamental right for all citizens. However, these sorts of argument do not challenge how ‘risk’ itself is conceptualised; my intention in this blog is to challenge the notion of ‘risk’ itself as it is commonly applied in risk assessments with people with learning disabilities.

Within social care and other specialist learning disability services, notions of risk concerning people with learning disabilities have come to be almost synonymous with the practice of risk assessment. Definitions and approaches to risk assessment in social care are legion, but this one below from SCIE is helpful and clear in describing the main components of risk assessment (http://www.scie.org.uk/publications/adultsafeguardinglondon/riskassessment/keyprinciples.asp):

“Assessing the risk to vulnerable people against their right to make choices about how to live their life is difficult, and in any given situation different people will have different views on striking the right balance. This means that agreement on the degree of risk in every situation may not be possible. However, professionals should have a common understanding of the principles they are working to, the legal structures in place, and the documentation that can help and that they need to complete. It can be helpful to bear in mind the following key principles:

·         Risk work should be person-centred and empowering.

·         The Mental Capacity Act asserts people’s right to make decisions, even unwise ones, if they have the capacity to do so. The Mental Capacity Act and the code of practice and Deprivation of Liberty Safeguards that accompany it, are all key legal considerations in evaluating risk.

·         Government guidance is that 'people have the right to live their lives to the full as long as that does not stop others from doing the same’.

·         Risk assessments should always consider the benefits of the proposed action on the adult at risk and weigh these against any risks.

·         The person’s strengths should always be considered when evaluating risk.

·         Multi-agency working is important in assessing and managing risk, but should always take place within a person-centred framework that avoids blanket restrictions.

·         Organisations should model a positive approach to risk-taking that supports employees to enable people to live the life they want, rather than a defensive approach that focuses too much on risk to the organisation.

·         Decisions on risk should be reasonable, proportionate, accountable and defensible, and rooted in evidence-based practice and partnership working.”

This and similar descriptions of risk assessment show well the characteristics of risk assessments and the assumptions that underpin them, including those taking a ‘positive’ view of risk-taking.

Most obviously, this view of risk is tied up with a judgement of decision-making capacity. If a person with learning disabilities is judged to have the capacity to make a decision about the risks of a particular course of action, then no risk assessment is required. But if a person with learning disabilities is judged not to have the capacity to make a decision about the risks of a particular course of action, then a risk assessment must be conducted.  There are sound legal reasons for this in terms of the Mental Capacity Act in England, but I believe that binding up risk (or more accurately the responsibility of services to do something about what they consider to be a risk) with decision-making capacity has its downsides for people with learning disabilities.

For example, this approach to risk tends to individualise risk (as risks are only assessed person by person) and locate the evaluation of risk within the person (as risk assessment is dependent on a capacity within individuals). In addition, for those whose capacity has been questioned, this leads to repeatedly and wearyingly repeated assessments for specific activities every time someone wants to do something. Faced with this repeated bureaucratic requirement, would it be any surprise if people with learning disabilities and their supporters gradually reduced their ‘risky’ activities, taking refuge in the ‘safe’, saving the risk assessment for infrequent special occasions, and surrendering spontaneity altogether?

The tying of risk assessment to decision-making capacity also raises the question of risk for whom – are these assessments really about risks to harm that people with learning disabilities may experience (in which case why aren’t they done with everyone, whether they demonstrate decision-making capacity or not?), or are they in the end about limiting the liability of those organisations that support people?

So far, my contention has been that risk assessments in social care are tied to decision-making capacity, resulting in a conception of risk that is located within individuals and that is more about risk to organisational reputation rather than risks to people with learning disabilities. Risk assessments in social care are also, I believe, underpinned by a set of additional assumptions that I believe are partial, unbalanced, and in many ways unhelpful to people with learning disabilities.

First, risk assessment assumes a place of safety (usually where the person lives) from which potentially risky activities happen (somewhere outside).

Second, risk is defined in terms of activity, as opposed to the ‘safe’ option of doing nothing.

Third, risk is defined in the short term (doing Activity X in the reasonably near future) rather than considering longer-term consequences.  

Finally, any risks to the person contained within the risk assessment are typically seen as coming about through harm being done to the person by some external agent (for example other people or traffic).

For me, this conceptualisation of risk as potential harm coming to ‘vulnerable’ individuals from an external agent as a result of activity ‘outside’ the place of safety of the home is seriously misplaced, and stands in direct contrast to how risk is conceptualised in public health. There are probably as many definitions of risk in public health as there are public health researchers, but definitions of risk coalesce around the sort of definition provided by the World Health Organization:

World Health Organization “A risk factor is any attribute, characteristic or exposure [my italics] of an individual that increases the likelihood of developing a disease or injury. Some examples of the more important risk factors are underweight, unsafe sex, high blood pressure, tobacco and alcohol consumption, and unsafe water, sanitation and hygiene.” (http://www.who.int/topics/risk_factors/en/)

For me, this public health definition of risk contrasts at almost every point with the assumptions underpinning social care and specialist learning disability service risk assessments. Some of these contrasts are as follows:

First, risk in public health terms concerns the risk to populations or groups of people, irrespective of decision-making capacity. Having decision-making capacity does not make you immune to the health risks associated with unhealthy environments (e.g. unsafe water, sanitation and hygiene) or from the structural conditions and environments that discourage healthy behaviours and encourage unhealthy behaviours (e.g. poverty, unemployment, living in areas that feel threatening). This means that risk in public health terms is not considered to be a property (or sole responsibility) of individuals, but as the product of people’s histories, life circumstances and environments and how people interact with them. By only focusing on people below a threshold of decision-making capacity, social care risk assessments both ignore a large population they are supporting and do not consider the whole ecology of people’s lives in terms of conditions that promote or hinder health.

Second, risk in public health terms uses an expansive view of health (see  http://theindependentlivingdebate.wordpress.com/2013/12/04/can-public-health-be-helpful-in-achieving-independent-living/ for an explanation of what I mean) and recognises the complexity of how different aspects of health interact. Social care risk assessments focus on a very narrow set of risks, which ignores the major causes of distress, ill health and premature death for people with learning disabilities. For example, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, run by the Norah Fry Research Centre at the University of Bristol (see final report here www.bristol.ac.uk/cipold/fullfinalreport.pdf) reports the following major immediate and underlying causes of death for people with learning disabilities, in descending order of underlying causes of death:

1)      Heart and circulatory disorders (21% of people immediate cause of death; 22% of people underlying cause of death);

2)      Cancer (15% of people immediate cause of death; 20% of people underlying cause of death);

3)      Respiratory disorders, including choking (34% of people immediate cause of death; 16% of people underlying cause of death);

4)      Nervous system, including epilepsy (10% immediate cause of death; 16% underlying cause of death);

5)      Congenital and chromosomal causes (<0.5% immediate cause of death; 7% underlying cause of death);

6)      Digestive system (4% immediate cause of death; 4% underlying cause of death);

7)      External causes (3% immediate cause of death; 4% underlying cause of death);

8)      Mental and behavioural disorders (1% immediate cause of death; 3% underlying cause of death)

9)      Infections (5% immediate cause of death; <0.5% underlying cause of death).

As this list clearly shows, the potential harms that are the typical preserve of social care risk assessments (external causes, controlling the outward manifestations of mental and behavioural disorders) are not the major health issues that cause the vast majority of people with learning disabilities to die. Although social care services may consider that most of the major causes of death for people with learning disabilities (and their assessment) are the responsibility of health services, social care have a major role to play in assessing and working to reduce the risks associated with poor health and premature death amongst people with learning disabilities (see for example the recent Health Charter for learning disability social care services http://www.improvinghealthandlives.org.uk/publications/1223/Improving_the_health_and_wellbeing_of_people_with_learning_disabilities._Guidance_for_social_care_providers_and_commissioners_(to_support_the_implementation_of_the_health_charter) ). This might include:

·         Social care providers need to have an understanding of health conditions such as epilepsy and dysphagia so that they can assess and support people with learning disabilities in ways that support people’s health and autonomy. This will include ‘risk assessments’ of environments and service practices that promote or put at risk people’s health in these areas.

·         Social care providers have a duty to ensure that people with learning disabilities get access to good healthcare screening and treatment (there is evidence that social care providers can make a crucial difference to whether people with learning disabilities attend annual health checks and get good healthcare in mainstream hospital settings). A ‘risk assessment’ for making the journey to the healthcare setting needs to include a risk assessment to people’s health if the journey is not made successfully.

·         Social care providers have a responsibility to ensure that they are promoting good health amongst the people they are supporting, not only in aspects of people’s lives such as nutrition and diet, physical activity, and substance use, but also in areas such as promoting meaningful social relationships with partners, family and friends, employment and being respected as a citizen of value.

Third, the focus of a public health view of risk necessarily spans both long-term and short-term risks to health, particularly as many of the risks to major population health problems work over a lifespan or even longer. The short-term focus of most social care risk assessment works against the reduction of those longer-term health risks that end up causing the death (and reducing the fulfilment in people’s lives while they are alive) of most people with learning disabilities. A series of risk assessments that lead to a person hardly ever going out or trying new activities may protect the organisation against litigation and reduce the potentiality for short-term ‘accidents’, but the longer-term impact of inactivity and social isolation is likely to be far more serious for the person’s health in the longer term. There is a similar issue about the social care risk assessment assumption that activities are inherently risky. This may well be true, but it is also the case that inactivity is inherently risky too, and risk assessments need to take the whole range of risks to health into account.

The final point I want to make concerns the assumption in social care risk assessments that risks occur when someone wants to go out from a ‘place of safety’, typically the place where they live. There are two ways in which I want to strongly challenge this assumption. The first is a repeat of the points made above – sitting at home and never going out may reduce one set of risks to health, but it also inherently increases other sets of important risks to health too – I wonder if there are any environments that can be considered to be places of safety or risk-free in these terms. My second challenge concerns residential services of various types for people with learning disabilities. Evidence over years has shown that many services where people with learning disabilities are “placed” are very far from being places of safety. Furthermore, the very factors that are associated with unsafe services for the people living there (culturally closed environments, where residents are not supported by staff to have active contact with or a meaningful presence in local communities) tend to be the direction of travel that specialist learning disability risk assessments drive services towards (see @MarkNeary1‘s daily blog for the #JusticeforLB campaign about his son’s stay in an assessment and treatment unit, ”107 stories from an Assessment and Treatment Unit” http://markneary.blogspot.co.uk/ or @sarasiobhan’s blog about her son LB’s preventable death in an Assessment and Treatment Unit caused among other things by the Unit’s lack of risk assessment and preventive action concerning her son’s epilepsy http://mydaftlife.wordpress.com/the-report/ ).

Put this together and I would suggest that learning disability services (whether social care, health or independent sector) need a different (or additional?) way of assessing risk on a reasonably regular basis, one that applies to everyone with learning disabilities and assesses the risks to a wide range of important health outcomes for people, taking due account of health-enabling (or health-blocking) environments and living conditions, and the factors that promote long-term positive physical health, mental health and wellbeing. Such an assessment would place current risk assessments within their proper context, and would hopefully lead to some quite different decisions about what is prioritised when people are being supported. This might sound like one of my usual hopelessly utopian strictures, but an example of such a risk assessment, although in its early stages of development, has been produced by a group of learning disability nurses in England. The assessment is called the Health Equalities Framework (or HEF) for short, and it’s worth having a look at as an example of what such a risk assessment tool might look like (see http://www.debramooreassociates.com/index.php?option=com_content&view=article&id=402:the-health-equalities-framework-hef&catid=23:national-news&Itemid=39 ).

Note: As I promised to tell you at the beginning, the title of this blogpost is from Hilary Mantel’s superb novel about the French Revolution, told through the eyes and words of some of its protagonists. In the novel, the ironies related to the title multiply as people increasingly desperately seek safety from the Terror, which is of course being run through the Committee on Public Safety. The cruellest irony of ‘A place of greater safety’ is revealed by Camille Desmoulins, who says in the novel that the only ultimate ‘place of greater safety’ is death.