Carlyle, R. & Robertson, S. Co-produced Easy Read guides to improve health literate conversations for those with a learning disability or with autism
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Carlyle, R. & Robertson, S. Co-produced Easy Read guides to improve health literate conversations for those with a learning disability or with autism
- 1. 1 | 1 | @NHSKFH Co-produced easy read to improve health literate conversations for those with a learning disability or with autism Ruth Carlyle and Sue Robertson National NHS Knowledge and Library Services team NHS England
- 2. 2 | Dr Ruth Carlyle Head of NHS Knowledge and Library Services – Midlands, East and North of England NHS England Email: Ruth.Carlyle@hee.nhs.uk Twitter: @RuthCarlyle Sue Robertson Deputy Head of Knowledge and Library Services – London, South East and South West NHS England Email: sue.robertson@hee.nhs.uk Twitter: @SueK4H
- 3. 3 | 3 | Importance of shared decision making Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 4. 4 | 4 | making 4 NICE Shared Decision Making Guidance: https://www.nice.org.uk/guidance/ng19 7/resources/shared-decision-making- pdf-66142087186885 Accessible Information Standard https://www.england.nhs.uk/about/equ ality/equality-hub/patient-equalities- programme/equality-frameworks-and- information-standards/accessibleinfo/ Levers for shared decision making
- 5. 5 | 5 | Need for easy read 5 People with a learning disability are more likely to have worse physical and mental health than people without a learning disability People with a learning disability are significantly more likely to die from an avoidable cause Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 6. 6 | 6 | Co-production is more than engagement. Co-production Co-produced easy read to improve health literate conversations for those with a learning disability or with autism ENGAGE Invite views CO-DESIGN Plan and design information together CO-PRODUCE Plan, design, create and review information, with users as equal members of the team https://pifonline.org.uk/download/file/562/
- 7. 7 | 7 | • Plan co-producer involvement throughout your project • Describe co-producer roles and responsibilities • Ensure co-producers match your audience – including people with lower health literacy and disadvantaged people • Include budget to pay people for their time, checking for any impact on benefits payments Preparing for co-production Co-produced easy read to improve health literate conversations for those with a learning disability or with autism https://pifonline.org.uk/download/file/562/ Source: Patient Information Forum
- 8. 8 | 8 | Our co-production process • Workshop 1: issues and needs, with participants sharing stories about health conversations and what could be better • Workshop 2: deciding what products might be • Workshops 3 and 4: refining the products All workshops took place online, with advocates to support the people with learning difficulties and/or autism Time funded for all participants Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 9. 9 | 9 | Through co-production, identified the need not just for an easy read guide on the “three questions” in the NICE guidance - Also needed a guide to help with preparation for a health conversation. Changes due to co-production Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 10. 10 | 10 | • How to prepare to ask questions • Reminder you can take someone with you if wanted • Checklist to see if healthcare professionals are • Speaking at a speed that is right for you • Using words you understand • Addressing you directly unless you have given permission to do otherwise Preparing for a conversation: 1 Co-produced easy read to improve health literate conversations for those with a learning disability or with autism https://library.nhs.uk/easy-read-for-health/
- 11. 11 | 11 | Preparing for a health coion 2 • Mobile phone communication preferred • Practical hints and tips when attending a virtual consultation • Right to receive information in a format you understand Preparing for a conversation: 2 Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 12. 12 | 12 | 3Qs for shared decision making 12 The NICE guideline 197 on shared decision making includes three questions: • What are my options? • What are the risks and benefits or those options? • How can I get support to help me make a decision https://library.nhs.uk/easy-read-for-health/ 3Qs for shared decision making Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 13. 13 | 13 | Applying 3Qs in easy read 13 • Importance of words • Importance of pictures • Importance of colour • Chunking information into sections https://library.nhs.uk/easy-read-for-health/ Applying 3Qs in easy read Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 14. 14 | 14 | Time Learning: co-production needs Flexibility Imagination Funding Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 15. 15 | 15 | Developing easy read 15 I can use my good and bad experience of healthcare to make services better for everyone and make changes for everybody It was great how we worked on this project because the experts by experience shaped the leaflets I felt very included and listened to …..the leaflet was based on our lived experience, not just professionals Value of involvement Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 16. 16 | 16 | Positive surprises Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 17. 17 | 17 | Use and share https://library.nhs.uk/easy- read-for-health/ Co-produced easy read to improve health literate conversations for those with a learning disability or with autism
- 18. 18 | Dr Ruth Carlyle Head of NHS Knowledge and Library Services – Midlands, East and North of England NHS England Email: Ruth.Carlyle@hee.nhs.uk Twitter: @RuthCarlyle Sue Robertson Deputy Head of Knowledge and Library Services – London, South East and South West NHS England Email: sue.robertson@hee.nhs.uk Twitter: @SueK4H
Editor's Notes
- With an ageing population and increasing co-morbidities, the NHS is expecting people increasingly to be able to make decisions about their health, either for their own care at home, or in discussions with health professionals. This is referred to in NHS policy as shared decision making. In the terms of the NICE shared decision making guidance summary for the public: Shared decision making is when health professionals and patients work together. It puts you at the centre of decisions about your own treatment and care. This means that: different choices available to the patient are discussed care or treatment options are explored in full, along with the risks and benefits patients reach a decision with their health and social care professional. In easy read terms, ‘When you speak to a health professional you might need to make important choices about your healthcare.’
- The NICE shared decision making guidance requires high-level advocacy in NHS organisations, planned approaches, skills development and promotion of shared decision making itself. There is also a mandatory requirement for NHS-funded organisations, including adult social care, to provide information in formats that can be accessed by the individual, such as British Sign Language or Braille, to support decision making
- If you have a learning disability you are more likely to have worse physical and mental health and your life expectancy is considerably shorter. On average, the life expectancy of women with a learning disability is 17 years shorter than for women in the general population. For men with a learning disability 14 years shorter than for men in the general population (NHS Digital 2020). 38% of people with a learning disability died from an avoidable cause, compared to 9% in a comparison population of people without a learning disability (Heslop et al. 2013, p. 92). If you cannot understand the words used in the patient letters sent to you or the information includes jargon, you are more likely to miss appointments, not prepare for a consultation, you may eat when you need to fast before a blood test, not take the medication you need correctly – all of which contributes to poorer health outcomes. If you have a carer or relative accompanying you to a healthcare appointment sometimes the person with you can be addressed by the healthcare professional rather than you and you feel excluded. From our perspective in the national NHS knowledge and library services team, we wanted to address health inequalities by ensuring access to shared decision making for people who might otherwise be excluded. For our co-producers, easy read guides empowers those with a learning disability or autism to understand, to be more independent and to have confidence to speak or ask questions.
- To meet the need for people with learning difficulties and autism to take part in shared decisions, we agreed as the national NHS knowledge and library services team that we would co-produce resources. Much of the work on easy read involves engagement – asking people with learning difficulties or other target groups to comment on a draft. Alternatively, information producers can co-design resources with their intended audience – planning and designing the information together. Co-producing involves a willingness to start with a blanker sheet, working our what is needed as well as planning, creating and designing the information together as members of a team.
- Co-production involves planning at each stage, so that decision making is structured through planned collaboration sessions. All of those involved, including advocates and carers, need to be clear about their roles and responsibilities. To be a reflection of the need, the co-producers in your group need to reflect the target audience. And you need to pay all those involved for their time – advocates and carers as well as co-producers.
- To recruit people with learning difficulties and autism, we worked with an agency that specialises in easy read and has relationships with local groups including Camden People First, Norfolk Open Doors and Sunderland People First. We focussed on a workshop approach for discussion at each stage. In the first workshop, co-producers discussed good and bad experiences of healthcare discussions and what would have been helpful. In the second workshop, we were joined by a representative from NICE and discussed the link to the shared decision making guidance and what might be useful as products. Then we had two further workshops to refine the products. All workshops took place online, with advocates to support the people with learning difficulties and/or autism Time funded for all participants
- Although we met our coproducers initially to work on an Easy Read guide for the 3 questions we quickly learnt that we needed to produce a guide to prepare for a healthcare conversation This shows the value and strength of co-production. We were able to adapt and co-produce a second guide Getting ready for a talk about your health. Our guides can be downloaded from 2 different sites: our organisational website and a community website in Leeds. We can see that the different websites attract different audiences. The 3 Questions for better health is more frequently downloaded from our organisational website and Getting ready for a talk about your health guide is more frequently downloaded from the community website.
- In our Getting Ready for a talk about your health, we describe how to prepare to ask questions including: The different types of healthcare professional that you may meet so you can prepare well for the conversation Share examples of who you could take with you to give you additional support How you can check if you can understand what is being said to you. Is the healthcare professional speaking at a speed that you understand, using language you understand , speaking directly to you or the person supporting you?
- For our co-producers the preference is to receive all healthcare information digitally. Our co-producers use their mobile phone to track all appointments and may even use their phone to write notes or make a recording of questions to ask in a consultation. If you receive print letters through the post, especially letters with highlighted text to help it can make it harder to read. Therefore, appointments are missed, and you can miss out on vital treatment or a fast diagnosis. To prepare well we also included practical hints and tips; things to consider like making sure that the device you are using is fully charged, before attending an appointment online. Making sure you take a charger with you or checking you have access to a plug if needed. Our guide also explains our rights. The accessible information standard 2016 requires all organisations that provide NHS care and/or publicly-funded adult social care to meet the information and communication support needs of patients and service users. Asking for extra time if needed or that information is shared with you in a format that suits you. Formats such as large print or in an audio format.
- Our second guide uses the shared decision making 3 questions, issued in NICE guideline 197. The questions included in the guideline are What are my options? What are the risks and benefits or those options? How can I get support to help me make a decision NICE encourages all organisations to actively promote shared decision making to the people who are using their services, whether that is in posters displayed in the healthcare setting on websites or in appointment letters, email or WhatsApp groups. Guideline 197 was issued in June 2021 https://www.nice.org.uk/guidance/ng197 and includes three questions that can be used as part of a healthcare conversation.
- Language is so important. If you remember the NICE guidance talks about options not choices. For those in our community of practice, options were chosen for you, were imposed upon you whereas choice showed that our co-producers were empowered to make a decision about their healthcare. They were quick to pick up on jargon or if they could not understand the words used. For our co-producers, the pictures and images used were very important. If the image did not reinforce the words then it needed to be changed and made more appropriate. Making it look attractive by using colour was also important to our co-producers. Finally and very importantly the information shared needed to be clear and broken down into sections. The sentences are short and if necessary expand on a question. You can see that there is a choice to do nothing but with a need to understand what this might mean. The 3 questions are expressed in speech bubbles on every page of the guide as a reminder.
- If you are going to take a co-production approach, it is a huge privilege and very rewarding. You will learn about yourself as well as learning from the stories that the co-producers tell you. You will, however, need: Time – from first workshop to product took 10 months Flexibility – the product requested may not be what you had in mind Imagination – describing things in different ways until you get a mutual understanding is an art; you may also have to be imaginative about the type of product that is needed. Funding – the co-production sessions take time and need the budget to cover the time of all involved.
- Here are some comments from our co-producers, I'll give you a moment to have a quick read of the comments on the screen to see how our co-producers felt working on the guides As you can see from the comments in the slide, our coproducers wanted to be part of this work To help others and make services better To use their lived experience to create guides that are easily understood, with the right images, and the right words used To be empowered and understand how the guides could help with their healthcare conversations To develop our 2 Easy Read guides, we worked with IC Works and partners at Camden First, People First Sunderland and Opening Doors in Norfolk. A colleague from NICE joined us too for some of the sessions.
- If you listen, there can be positive surprises. Having asked our co-producers about their needs, they were keen to have an introductory resource on ‘Getting ready for a talk about your health’… and this is currently the more popular of the two resources downloaded from the Leeds community website.
- Our closing ask of you … do use and share the resources, as they are valuable for anyone preparing for a health consultation