Learning disabilities - calling more health psychologists

Hilary Clarke, a health psychologist with the Queen Elizabeth’s Foundation, issues a rallying call

Evidence from research indicates that people with learning disabilities have worse health than the general population (Clarke et al., 2008; Emerson & Baines, 2010; Nocon et al., 2008). Despite having poorer health, people with learning disabilities are not receiving the support they need to live healthier, more fulfilled lives.

Despite the important role health psychologists can play in this field, very few are actively engaged in working with this client group. In this article I hope to demonstrate how health psychologists can work towards reducing the health inequalities in creative and innovative ways.

There have been many instrumental White Papers, policies and investigations in recent years that have had an impact on the lives of people with learning disabilities and those who support them. I start from the premise that the health care for individuals with learning disabilities is very important and they should have the treatment they require in order to meet their needs. Yet people with learning disabilities do not receive the support they require, and the Department of Health is liaising with the NHS to enhance the service so it meets their needs (Department of Health, 2009). ‘Reasonable adjustments’ must be taken into account when working with people with disabilities in all areas of their lives (Disability Discrimination Act 2006). For the learning disability group, information needs to be communicated with them clearly to ensure they understand (Taylor, 2010). Huge health inequalities are experienced (Disability Rights Commission, 2006) and there is inadequate health care of individuals with a learning disability within the NHS (Mencap, 2007). This group should have greater influence over their own health care including regular health checks (Department of Health, 2006). The health of individuals needs to be promoted further, and it has been established that high numbers of professionals feel huge inequalities still exist for people with learning disabilities, acknowledging that they often experience a poorer service (Mencap, 2010).

So how can health psychologists contribute? According to the Division of Health Psychology, their work focuses on four key areas:
- the promotion and maintenance of health;
- the prevention and management of illness;
- the identification of psychological factors contributing to physical illness; and
- the improvement of the healthcare system.

I will describe my work at the Queen Elizabeth’s Foundation (QEF) and how it is guided by these four areas with the aim of reducing health inequalities in a practical way. A health psychologist’s focus has the potential to contribute in a relevant way to people with learning disabilities.

The QEF works to improve the opportunities for disabled people to live full and less dependent lives. Within QEF there are currently four services around Surrey. The one I am based in is the Independent Living Services, Dorincourt, which is a residential setting for people with learning and physical disabilities; the clients are predominantly young adults. Each client has a structured timetable that incorporates activities in which they are interested and which teach them skills to equip them to become more independent. As part of my role, I run group and 1:1 sessions aimed at improving health and well-being.

The promotion and maintenance of health
A large proportion of my role at the QEF is to inform and educate the clients with learning disabilities about their health. Health promotion is key, and the aim is for the individuals to ‘lead rich and fulfilling lives and to maximise their autonomy in a safe environment’ (Hubley & Copeman, 2008). It is crucial that information given to people with learning disabilities is adapted to meet their needs.

Group work is one way to promote and maintain the health of people with learning disabilities. The groups I run at the QEF focus on a range of topics, all aiming to improve the health of the individuals. Topics include: healthy eating, healthy living, women/men’s health, and mental health promotion. They are generally psycho-educational, providing information in an interactive and engaging way. My women’s health group focuses on all issues that affect women and their health, since it has been found that they sometimes hold inaccurate beliefs about their health (McCarthy & Millard, 2003). It is evident from research that the attendance of women with learning disabilities at health screening occurs less often in comparison to the general population (Higgins & O’Toole, 2008; Willis et al., 2008). My QEF group emphasises the importance of attending regular screening opportunities and aims to reduce confusion amongst women about issues affecting them.

Information in group and 1:1 sessions needs to be delivered in an accessible way (Higgins & O’Toole, 2008) to ensure people with learning disabilities can understand the material. The 1:1 sessions I run focus on many of the issues covered in group sessions but at a pace to suit the individual. Other, more personal, topics are also discussed; these include pain management and preparing for a medical procedure or hospital admission.

Another way health is promoted within the QEF is via health promotion events. Different themes to these ‘special’ days have emphasised that learning about health can be fun and imaginative. Collaboration with other departments has been crucial, and topics covered have included healthy living, sport, self-esteem, independence and awareness of disability. Each of these days incorporates appropriate and relevant activities (Clarke & Doswell, 2010). Owing to the success of these days, a community nurse asked for assistance with a big Health Day she hoped to run at a local day centre. An important part of making this event a success was to fully involve the carers of people with learning disabilities. This was to ensure the message was conveyed to the service users, so the paid/family carers attended the event as well in order to reinforce the messages from the day to the individuals they support. This fits in with research that states the importance of ensuring work tackling the health of people with learning disabilities is also aimed at the carers of the individuals in order to achieve a significant effect, as carers may be involved in the decisions around lifestyle choices (McGuire et al., 2007).  

The prevention and management of illness
The 1:1 and group work aims to prevent illnesses amongst clients at the QEF. Evidence indicates that people with learning disabilities have a poorer diet than individuals in the general population (Emerson & Baines, 2010). Work focuses on improving knowledge and understanding amongst clients, supporting them to make healthier choices and to engage in some form of exercise. Obesity is a significant problem for many people with learning disabilities (Emerson & Baines, 2010; Marshall et al., 2003), and many individuals find it hard to understand which foods are healthy and the consequences of not following a healthy diet. Work often needs to involve educating staff in order for them to support the individuals with learning disabilities. Jenkins and McKenzie (2010) used the theory of planned behaviour to explore whether it could predict the extent care staff encouraged individuals with learning disabilities to eat a healthy diet. They found that it is a useful model to assess this and concluded that carers’ perceptions of attitudes of others play an important part in whether they advocate healthy eating. Another study illustrated that carers have a huge influence on encouraging people with learning disabilities to choose healthier options (Melville et al., 2009).

At the QEF, my work with the services that provide the food for the clients has also been crucial in order to ensure there is plenty of choice but that the majority of it is healthy. My work aims to improve the poor diet of clients in order to prevent long-term health conditions such as cardiovascular disease, obesity and diabetes. Evidence suggests that people with learning disabilities ‘are at a higher risk than the general population of two of the most commonly known risk factors for chronic health: lack of exercise and poor diet’ (Wiseman et al., 2008, p.73).

Another important element of preventing illnesses is to increase the individual’s awareness of the importance of screening, due to the historical low uptake already mentioned. In the women’s and men’s health groups information is given to improve the knowledge of people with learning disabilities about checking for lumps, and emphasises what individuals should do if they discover any changes.

As well as focusing on preventing illness, much of my role is to support people in managing their condition and adjusting to this emotionally. At the QEF, disability awareness groups have been run aimed at supporting individuals to understand and cope with their disability. Another aspect involves working with individuals who are living with pain. Many people with learning disabilities find it hard to express pain that they may be experiencing and in some instances may behave in an inappropriate manner when they are trying to communicate that they are in pain. Monica Beacroft and Karen Dodd have conducted research to explore whether people with learning disabilities are receiving the support they require when they are in pain. They highlighted that individuals are reliant on carers to manage their pain although may not have the ability to express that they are experiencing pain (Beacroft & Dodd, 2011).

The identification of psychological factors  
The motivation of clients is a crucial determinant as to whether they adapt their behaviour and stay healthy. Many individuals without learning disabilities find it hard to stay focused on a healthy diet and engage in regular exercise; this is even more difficult for clients with a learning disability. If an individual finds it hard to cope, adjust or accept their disability it is more likely that they will not look after themselves well, which will manifest itself in some form of physical illness (e.g. diabetes, obesity or cardiovascular disease). Adherence is an important topic for health psychologists and, through my work, I have found that many of the individuals I work with find it extremely difficult to adhere to a recommended regime. All clients have exercise programmes and many receive information relating to maintaining a healthy diet. Despite this, many clients choose not to comply with the advice. I have overcome this difficulty by working with staff (including the catering company at the QEF), finding new ways to present the information to clients repeatedly so the message filters in, and breaking the advice down so it is clear and understandable for the individual. The role of the care team is crucial as they are involved in supporting clients at meal times (e.g. with choice and portion sizes) and in implementing their exercise programmes. I have been involved in discussing this with the care team and this remains an ongoing piece of work.

The improvement of the health care system
A large part of my work at the QEF involves supporting clients through 1:1 and group work to improve their experience of the healthcare system. This involves preparing individuals to attend their GP/hospital appointments. Owing to their communication difficulties, it can be hard for them to express themselves and to understand the information the doctor is giving them. Clients having surgical procedures are usually apprehensive and require a lot of reassurance. Therefore, following discussions with a community learning disability nurse, the team at the QEF creates ‘hospital books’ aimed at providing a whole picture about the individual who is having treatment. The purpose is for hospital staff to have information on what the person is usually like when they are not experiencing pain and are not anxious. The books inform staff about the individual’s likes and dislikes, outlining characteristics of the patient that are crucial. They emphasise that they may be very anxious about the procedure and going to hospital, highlighting that a large amount of reassurance will be required. The individuals who have used these books have been positive about their experiences, and also the staff reported finding them useful. Hospital passports are similar, and have also been successful and are becoming more common when people with learning disabilities access hospital services (Blair et al., 2010). In Surrey there are three hospital liaison nurses covering all hospitals in the area. Their role involves teaching staff in hospitals about meeting the needs of individuals with learning disabilities. Their aim is to ensure the experience is positive and that staff feel confident in working with people with such disabilities. Research indicates that some doctors do not acknowledge that women with learning disabilities get breast cancer (Willis et al., 2008). There is still a long way to go and more training is needed.

It is evident that people with learning disabilities have additional health needs that require support, and health psychology has a lot to offer this group of individuals. In this article I have illustrated how health psychologists can work in creative ways to reduce the health inequalities experienced by people with learning disabilities. I was thrilled to see that the BPS Division of Health Psychology 2010 conference had a symposium on health inequalities, health promotion and people with learning disabilities. I feel this certainly is a step in the right direction. From my experience, this is a fascinating field to work in. I feel I have shown how health psychologists can make a real difference to people and hope more will be encouraged to join this exciting field.

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