Presenting information in an easy-read format can reduce inequalities in decision-making for patients with learning disabilities
In this article…
- Healthcare providers’ responsibilities on information-giving
- How to produce easy-read information
- How to test information before distribution
Simone King is staff nurse, pre-admission assessment, Royal Bournemouth and Christchurch NHS Trust.
King S (2011) Clear information can cut inequalities in learning disabilities. Nursing Times; 107: 4, early online publication.
Healthcare providers have a legal responsibility to ensure that people with learning disabilities have their health needs met to the same level as the general population. As part of this, they should be empowered to make as many decisions as possible about their own healthcare. Providing information in an easy-read format can help them to understand health issues and therefore give them the opportunity to take greater control of their own care and make more decisions for themselves.
Keywords:Learning disability, Communication, Information
- This article has been double-blind peer reviewed
5 key points
- Patients with learning disabilities should be given healthcare information in a format they can understand
- This enables them to make more decisions and take greater control over their own health
- Healthcare providers have a legal responsibility to ensure all patients receive equality of care
- Producing easy-read information can improve communication between healthcare professionals and patients with learning disabilities
- Learning disability groups can be invited to give feedback on information before it is distributed
There are 1.5 million people in the UK with learning disabilities. Since many also suffer from a sensory loss and are prone to poorer health than that of the general population they are more likely to need treatment or investigations in the hospital environment (Mencap, 2007).
The Equality Act 2010 and the Mental Capacity Act 2005 mean healthcare providers have a legal obligation to ensure equality of service provision for people with learning disabilities, and to ensure their needs are not neglected. These needs have been defined in a number of reports.
In 2001, Valuing People, the first white paper on services for people with learning disabilities in over 30 years addressed inconsistencies in these services (Department of Health, 2001). Treat Me Right! (Mencap, 2004) emphasised that hospitals must fulfil their legal duty of care and that healthcare professionals should not rely on relatives or carers to communicate with patients who have learning disabilities. Healthcare providers have a legal responsibility to ensure these patients have their needs met and this includes having access to easy-read information.
Death by Indifference (Mencap, 2007) highlighted six cases in which a lack of knowledge and understanding of people with learning disabilities had clearly resulted in their deaths. It stated there was widespread ignorance throughout the healthcare professions towards people with learning disabilities and that this could be addressed by giving staff the correct training and opportunities to develop relevant skills. In response to this report the DH commissioned an inquiry into access to healthcare for people with learning disabilities, which led to a report that included 10 recommendations to ensure an effective system within healthcare for those with learning disabilities (Michael, 2008). Throughout these recommendations, the need for “reasonable adjustments” to improve access to health services for these individuals was emphasised, including a need for accessible information.
After a comprehensive consultation with over 10,000 people, the DH (2009) published Valuing People Now. It discussed how services should progress beyond the original Valuing People (DH, 2001), and set priorities. These included ensuring people with learning disabilities receive a good service from the NHS, and that they should be given both choice and control over their own healthcare.
The Care Quality Commission (CQC), the independent regulator of health and social care in England is reviewing how healthcare is provided for patients with learning disabilities and how it is assessed, particularly in acute general trusts. This includes evaluating communication methods, making sure patients are given the appropriate information in the appropriate form to enable them to feel informed and empowered. It will assess local performance and publish the results, developing action plans and recommendations for the worst performers.
After researching national documents I decided to look at our trust’s local policy for patients with learning disabilities to see whether any changes were required within the pre-assessment unit.
Three relevant points were:
- Healthcare professionals have a responsibility to keep their knowledge of people with learning disabilities up to date;
- Information for people with learning disabilities should be provided in a way that meets their needs and enables them to make choices and access trust services;
- At the pre-admission assessment these patients should be offered the opportunity, where possible, to look around and familiarise themselves with the hospital, before admission.
Despite these recommendations I could find no evidence of easy -read information or communication aids within the pre-assessment area.
It was clear I needed to gain some insight into the communication methods used by people with learning disabilities, but was not prepared for the wide range available to them. They may use a mix of signing, body language, facial expression, gesture, photographs, pictures, easy words, symbols and objects to get their message across. This is known as ”total communication” and means not relying on just one method of communication (Dorset People First, 2010).
People with learning disabilities have varied levels of understanding and therefore need communication to be adapted to their individual needs (Mencap, 2004). When they are to be pre-assessed for surgery, like anyone else they have the right to have their fears listened to, be able to understand safety instructions such as the need for fasting and be fully informed of the procedure and aftercare (Mencap, 2004). All reasonable steps should be taken to help communication between nurses and patients. The DH (2001) suggested this might involve using interpreters or communication aids as appropriate so patients are empowered and able to make informed decisions for consent to treatment.
The common theme emerging from Mencap (2007; 2004), the DH (2009; 2001), the CQC (2009) and the trust local policy, seemed to be the need for enhanced communication skills and staff education. Anecdotal evidence from my own area suggests healthcare professionals often feel apprehensive and inadequate when caring for and communicating with people with learning disabilities – mainly because they think they do not know how to. So it seems that it is not patients with learning disabilities who have a “problem” with communication, but the healthcare professionals caring for, or pre-assessing them, because they do not understand these patients’ needs and the way they communicate. Ultimately, nurses should be responsible for educating themselves and developing skills that will allow them to communicate effectively.
Nurses can take some practical steps to improve their communication with patients who have learning disabilities. Mencap (2002) suggested some general points for consideration when communicating with people with learning disabilities in general. These include using short simple sentences, pictures or photographs and checking understanding rather than making assumptions – for example nodding does not necessarily mean they understand what has been said. Patients also need to be offered the opportunity, where possible, to look around the department they will be admitted to in order to familiarise themselves with both the area and the staff.
Patients can also help hospital staff by making them aware of their communication needs. In many areas patients with learning disabilities are encouraged to use a Health Action Plan or a Health Passport (DH, 2001). These documents contain information such as allergies, past medical history, current health problems and who is helping with those problems. They also include details of appointments, medication, preferred method of communication and eating habits. They provide a personalised record of what individuals need to do to stay healthy, and specify any support they mayneed.
Scope (2010) suggested that documents like these enable people to take responsibility for their own health and to communicate accurately their health status and needs to others. Locally, patients with learning disabilities have a ”Yellow Health Book”, which is a combination of the Health Passport and the Health Action Plan and also includes the Traffic Light assessment for hospitals. This consists of three pages, the first has a red heading and lists things health professionals MUST know about the patient; the second has an amber heading and includes things that are important to the patient; the third has a green heading and is for likes and dislikes. It particularly useful in emergency situations where there may not be time to read through the entire health book.
Easy-read information (sometimes referred to as accessible information) is written in a way that makes it easy to understand. Mencap (2002) suggested that simple words supported by pictures are often an effective way to convey information to people with learning disabilities. Although most commonly used for this group, Moss (2008) noted that it can be also used for patients with poor eyesight, poor reading skills, those who speak little English, who may be confused or who have dementia.
I believed it was important to find out how to correctly produce the easy-read information to ensure it was in presented in a way that would benefit patients with learning disabilities. A toolkit on how to produce patient information (DH, 2003) stated it is important to ensure the people using the information are involved in developing it because they know what is required and whether the finished product works or not. If people with learning disabilities cannot be involved in producing easy-read information, they should at least be invited to give feedback, preferably through a learning disabilities group, before it is distributed.
Initially, I had a meeting with the trust’s disability lead nurse, who is also the Patient Advice and Liaison (PALS) coordinator. I then contacted Bournemouth People First, a local learning disabilities charity and action group run by people with learning disabilities, which actively campaigns for services, provides training, and holds conferences.
We agreed that producing easy-read information would benefit people with learning disabilities. Having found overwhelming evidence both nationally and locally, we started putting the information together. Guidelines for producing easy-read information compiled by people with learning disabilities (Mencap, 2002) were particularly helpful .
Due to the variety of written information held in the pre-admission assessment unit I decided to begin by converting the most frequently used documents into easy-read format. These included: “Coming in for your operation”, anaesthetic information, fasting instructions and questions for surgeons or anaesthetists.
Guided by the disability lead nurse and Mencap (2002) I started to put together the easy-read information leaflets (Box 1). Writing them was not easy. I needed to extract only the important information from the original text, which initially made me feel I was trivialising the information I was omitting and judging how much information patients with learning disabilities should receive. However, this became less of a problem as I progressed. I realised that it was better for patients to understand the information they receive than being confused by too much information.
Box 1. Principles for easy-read information
- Use simple everyday words.
- Ensure it contains clear instructions and facts.
- Avoid detailed explanations.
- Use short sentences and simple punctuation.
- Do not use abbreviations or jargon.
- Use a font size of at least 14 point.
- Use a clear type face such as Arial.
- Italics, block capitals and underlining are difficult to read. Use bold letters to place emphasis on a word.
- Use bullet points or boxes to break up text and highlight important information.
- Ensure there is plenty of white space left on the paper. Do not try to squash too much information onto one page.
Source: Mencap 2002
Pictures to support text
Pictures can be in the form of photographs, symbols or drawings (Mencap, 2002). It is important to spend time choosing the pictures that most represent what you are trying to say. See Useful links for a range of source of suitable pictures.
Photographs are most effective when showing a specific person, place or piece of equipment. If photographing a person ensure you obtain their permission first (Mencap, 2002). Easy-read photographs can also be downloaded free from some internet sites or bought on CD.
Computer software such as Widgit can be used to add symbols to easy-read text. Widgit Literacy symbols (Fig 1) are designed to show key words or ideas without adding any unnecessary information.
Illustrations can show more information than symbols. However, they should be simple and have no more detail than absolutely necessary (Mencap, 2002). They can be hand drawn, obtained from a picture bank such as the Change Picture Bank or Boardmaker – both of which can be bought on CD or from clip art.
It is important to ensure there is no copyright linked to the pictures, symbols or drawings before downloading them.
My trust supports the use of the Change Picture Bank for people with learning disabilities, which includes sections focusing specifically on hospitals and medicine. Coupled with some drawings from clip art, these gave me everything I needed to produce the leaflets.
The final touches
Once completed, I sent the draft copy to the trust’s graphic designer, who added extra colour, the trust logo and more pictures. I then arranged a meeting with the local learning disability group, to show the finished leaflets and ask members to give feedback. They were pleased with the information leaflets and did not feel any further work was needed. The leaflets were then submitted to the trust’s Patient Information Group, to be approved for use within the organisation.
The information leaflets can be used to inform a wider group of patients than just those with learning disabilities, including those who speak little English, have poor eye sight, poor reading skills, dementia or confusion. They enable patients to make informed choices about their care and be more independent in preparing for admission to hospital. The leaflets also give staff more confidence in working with this group, as they know they giving them information they patient can understand, and ensure the trust will meet government and strategic health authority targets (CQC, 2009)
This initiative is still in its early stages. Although we have produced some of the core leaflets, we still need to produce easy-read information for the many different operations performed within the trust. We also need to depict the patient’s journey in photographic form from pre-admission assessment to discharge after surgery, to help familiarise patients with where they will be going if it is not possible to show them around these areas in person. Finally, we also need to formally evaluate the effectiveness of giving the information.
Implications for practice
We are making progress but need to raise awareness across the trust. I have given presentations to other pre-assessment areas, including the eye unit and orthopaedics and they will now be using the easy-read information.
However, this sort of information should not be confined to pre-assessment or surgical procedures. The British Institute of Learning Disabilities (2010) emphasises that it is the right of those with learning disabilities to be able to communicate, make choices and receive accessible information regarding their care. I will therefore be liaising with other nurses in such specialties as oncology and genito-urinary medicine.
Specialist learning disability nurses should not be solely responsible for educating staff and producing easy-read information, particularly within acute care settings. Overall, the development and use of effective communication and information tools constitutes a nurse’s duty of care and responsibility (NMC, 2008). Patients with learning disabilities need to be empowered and fully informed of their journey (DH, 2005). They have the right to receive information in formats they can understand and follow easily, without having to rely on others.
Legislation and charitable organisations have identified that more should be done to ensure equality and help healthcare professionals to develop the necessary skills and tools (Mencap, 2007; DH, 2001). My trust has been working closely with the service improvement manager for people with learning disabilities to ensure our services are accessible and to reduce health inequalities for these patients.
It is our responsibility as healthcare professionals to not only identify and familiarise ourselves with various tools to aid communication, but also to devise ways of using them effectively for our individual areas. When doing this we should always remember that simplicity is key.
‘I was taking away his independence’
I was due to pre-assess Mark Johnson*, a 22-year-old patient with a learning disability who was accompanied by his carer.
I felt apprehensive about communicating with Mr Johnson about his surgical procedure as I had virtually no experience of working with patients who have learning disabilities. I was worried I would not be able to communicate and give information to the same extent as I do with other patients.
Although I was able to communicate using simple words, I struggled at times to find the right ones and felt uncomfortable the whole way through the consultation.
I was unable to offer any written information that Mr Johnson could easily understand, and relied on his carer to ensure fasting instructions, explanation about the operation and patient pathway were explained to him again when required. However, in doing this I realised I was taking away both his independence and responsibility for his own health.
I would like to thank Linda Witchell (disability lead nurse), Debbie Hopper (service improvement manager for people with learning disabilities, NHS Bournemouth and Poole) and Bournemouth People First (Local Charity Action Group) for their guidance and support in the production of the easy-read information.
British Institute for Learning Disabilities (2010) Introduction to BILD.
Care Quality Commission (2009) Review of Meeting the Health Needs of Those with Mental Health Needs and Learning Disabilities 2009/2010. London: CQC.
Dorset People First (2010) Total Communication.
Department of Health (2009) Valuing People Now: a new three year strategy for people with learning disabilities. London: HMSO.
Department of Health (2003) Toolkit for Producing Patient Information. London: DH.
Department of Health (2001) Valuing People: a new strategy for learning disabilities for the 21st Century. London: DH.
Mencap (2010) About Learning Disability. London: Mencap.
Mencap (2007) Death by Indifference. London. Mencap.
Mencap (2004) Treat Me Right! Better healthcare for people with a learning disability. London: Mencap.
Mencap (2002) Am I Making Myself Clear? Mencap’s guidelines for accessible writing.London: Mencap.
Moss B (2008) Communication Skills for Health and Social Care. London: Sage Publications.
Nursing and Midwifery Council (2008) The Code: standards of conduct, performance and ethics for nurses and midwives. London: NMC.