Joe Wolfe explains that services need to focus more on the health and well-being of those with an ID
Why we need to focus more on health and wellbeing?
1. People with an intellectual disability are, in general, more likely to have poor health than their non-disabled peers (National Disability Authority 2011). This is recognised internationally and has received much attention over time. While there is an argument that sometimes this poorer health is related to the person’s disability, this is not exclusively the case. Indeed, there is growing evidence that the poorer health is often associated with, and influenced by, health inequality for people with intellectual disabilities. There are many factors which impact on health inequality for people with intellectual disabilities, including:
■ Difficulty in accessing appropriate health services
■ Difficulties in accessing, inadequate or non-existent health screening
■ Increased risk of exposure to poverty, poor housing, unemployment, social disconnectedness and discrimination (which all have an impact on health and well-being)
■ Increased use of medication, which can negatively impact on health and well-being, particularly when multiple medications are used (polypharmacy). People who are prescribed neuroleptic medications, for example, have a higher risk of obesity, heart attacks and diabetes
■ Communication difficulties and reduced health literacy, which may result in carers, families and staff having difficulty in or not recognising the person’s health needs
■ An absence of regard and consideration for the health and welfare of people with intellectual disabilities by some mainstream healthcare professionals, possibly as a result of a lack of awareness of, and inadequate education and training in, intellectual disabilities
■ Attitudes of healthcare professionals towards intellectual disability
■ Failures of healthcare providers and professionals to make reasonable adjustments in light of the literacy and communication difficulties experienced by people with intellectual disabilities
■ Institutional discrimination. This for example, was highlighted in a report by Mencap into the deaths of 6 people with intellectual disabilities who died while in the care of the NHS and led to a confidential inquiry into avoidable or premature deaths of people with intellectual disabilities (the CIPOLD Enquiry, 2013)
|Degree of Intellectual Disability||Number of people with this degree of disability in 2002||Number of people with this degree of disability in 2012|
2. In general, healthcare and well-being needs increase with age. The proportion of people with intellectual disabilities aged 35 and over has increased from 29% in 1974, to 48% in 2012 (Health Research Board 2013). Indeed, the number of people with an intellectual disability over 55 years of age has increased from 1666 in 2002, to 2452 in 2012. This represents an increase of almost 50% and this means that health and well-being are increasingly important and will become even more important over the coming years. In particular, when you consider that the population of people with severe and profound intellectual disabilities who are over 55 years of age has increased considerably (see Table 1 below), this further underlines the importance of services focusing on health and well-being.
3. Studies into deaths of people with intellectual disabilities are raising significant issues of concern. A recent study of all known deaths of 247 people with learning disabilities in a population area of 1.7 million people in the South West of England (The CIPOLD Report 2013) found that men with an intellectual disability died on average 13 years younger than men without an intellectual disability and women with an intellectual disability died on average 20 years younger than women without an intellectual disability. Significantly, this study found that with regard to premature deaths of people with intellectual disability, the most common reasons for these deaths were: delays or problems with diagnosis or treatment; and problems with identifying needs and non-provision of appropriate care in response to changing needs. This report also compared deaths in those with intellectual disability and those who did not have an intellectual disability and found that:
■ Record keeping was commonly more deficient for the group of people with intellectual disability, ‘particularly in relation to fluid intake, nutrition, weight and seizures.’
■ There was a lack of recognition of approaching end of life, which impacted negatively on the coordination of end of life care.
■ More of the people with intellectual disabilities died from causes that were potentially amenable to change by good quality healthcare.’
■ All aspects of care provision, planning, co-ordination and documentation were significantly less good’ for people with intellectual disabilities.
What was also of particular importance from the CIPOLD report (2013) was that it stated that 17% of people with intellectual disability are considered underweight, as opposed to 2% of the general population. Services have a major role to play in monitoring health and well-being and, in particular, included in this must be a focus on adequate nutrition and dietary intake for people with the most significant needs.
4. The importance of health checks has been identified as essential. In looking at the area of health checks, it has been shown that where people have access to health checks these are effective in picking up previously undetected conditions such as cancer, heart disease and dementia (Robertson et al. 2010). Those authors, in systematically reviewing the evidence on health checks, also found that effective health checking has resulted in life saving actions being taken for significant health issues.
5. Current government policy, standards and regulations all stipulate the need for organisations and staff to support the person to have seamless and fair access to services that properly assess and meet their needs with regard to health and well-being. Obviously, the greater the degree of intellectual disability, the greater the onus of responsibility lies on services and staff. When one considers that 8098 people with intellectual disabilities lived in residential services in Ireland in 2012 (Health Research Board 2013), there are a considerable number of people who require extensive support with regard to their health and well-being. In addition to this, in our experience, many people in day services and many people living at home (and their families) also require assistance in relation to accessing support with regard to health and well-being, as they often face many of the same barriers as people living in residential services.
How can services best support people with intellectual disabilities with regard to their health and well-being?
This is not about a medical model versus a social model of service. Put simply, people whose health and well-being are not addressed properly lose out on social and quality-of-life opportunities and live a shorter life. And people who do not have adequate social and quality of life opportunities have a poorer quality of health and well-being with similar consequences. Providing a model of support that focuses on health, well-being and social needs will have far better outcomes for the person. Not properly supporting people with regard to health and well-being discriminates and increases inequalities already faced.
So what can we do?
The advice given here is predominantly aimed at service managers and staff providing residential services to people with intellectual disabilities, but it may also be useful to others. This advice may be seen by some people as overly simplistic, however in my experience while there are many staff and services who provide excellent support to people with regard to their health and well-being, this is by no means universal and the standard can vary greatly, even within services. Steps to be taken could include the following:
1. Educate people with intellectual disabilities, where possible, on how to access health services and on the importance of health and well-being. Develop health education, health promotion and wellness programmes.
2. Ensure that every person in your service has an annual health check. If at all possible, this should be carried out by a doctor who understands the person and their needs well. If this is not possible, then a staff member very familiar with the person should be present for the health check to help in communicating the person’s health needs.
3. Ensure that every person in your service has proper access to health screening. Where one professional is leaning towards not allowing the person to have health screening, because they feel it is not in the person’s interest, try to ensure that a review is held to discuss this involving all relevant people (including if possible the person, their family, an advocate and relevant others) to have their say in whether screening should occur or not and to allow a team-based approach to making a ‘best-interest’ decision.
4. Ensure that people have access to a regular eyesight test. The Growing Older with an Intellectual Disability in Ireland Study (McCarron et al. 2011) found that people with an intellectual disability are twice as likely to have significant visual problems and at a much younger age than the general population. People with an intellectual disability, and in particular those with a severe to profound level of intellectual disability, are far less likely to have eyesight tests. People with significant degrees of intellectual disability are also far more likely to have mobility challenges and to experience falls than people of their own age in the general population.
5. Create up-to-date Hospital Passports that can help healthcare professionals understand the communication and healthcare needs of people going to hospital (or indeed accessing other healthcare services). Ensure these are updated every six months.
6. Focus on nutrition and a balanced, healthy diet. Ensure that people are weighed regularly, particularly people who have a severe or profound intellectual disability, and that any sudden or gradually substantial increase or decrease in weight is reviewed by the person’s team. Engage the supports of a dietician if necessary. Look for dietary sensitivities and intolerances, in particular, as these are not always considered sufficiently, despite being quite commonplace in the general population.
7. Where there is an assessed need with regard to health and well-being, ensure there is an up-to-date plan in place to meet that need. Ensure that reviews of the plan occur in strict accordance with dates set for review and / or any changing needs.
8. Staff and managers need to strongly advocate for health assessments, health screening and access to proper healthcare. This is essential and should be focused on throughout the organisation as different people will have different power to influence change.
9. Staff should increase the focus on exercise. This is shown to be taken-up less by people with intellectual disability, with an associated negative impact on health and well-being.
10- Staff should regularly review side effects to medication, particularly when the person is in receipt of polypharmacy (multiple medications).
11. Staff should use specific pain assessments to review pain, when necessary. This is particularly important with regard to people that have significant communication challenges. It is recognised in the literature that this often does not occur as frequently as it should and that people with intellectual disability are at risk of unrecognised and untreated pain (McCarron et al. 2011).
12. Staff should encourage and facilitate people to access mainstream health promotion and health programmes for the general population, if possible. Attendance at gyms and leisure activities is commonplace in some services.
13. Where organisations have Human Rights Committees and staff have a concern that people within the organisation are being deprived of their rights with regard to health and well-being (and, in particular, access to health care assessment or screening), they should not hesitate to bring these concerns to the Human Rights Committees.
14. Managers need to audit the quality of documentation and the quality of practice with regard to health and well-being. This should include a stringent audit of the quality of assessments, the quality of health action plans, hospital passports, medication management practice and the quality of key information such as weight charts and records of food and fluid intake.
Finally, perhaps as interested groups we should be advocating for increased access to specialists such as dieticians in supporting people with regard to their nutritional needs. We should also be arguing and advocating for improved training and education of general practitioners, public health and mainstream health service staff with regard to intellectual disabilities, and the right of people with intellectual disabilities to receive equal access and provision with regard to health and well-being.