Respiratory Futures recently spoke to Sarah Lewis, Physical Health Nurse from Hertfordshire Partnership University NHS Foundation Trust, on the recent creation of an Easy Read guide to Pneumonia. Sarah talks about the importance of improving accessibility to health information and how we can work to minimise the health challenges faced by people with learning disabilities.
What are some of the common health challenges faced by people with learning disabilities?
People with learning disabilities often face multiple health challenges, which can compound the difficulties they have in accessing and using healthcare. Barriers to high quality care faced by this group may include having poorer health literacy or a reduced ability to communicate effectively when engaging with service providers. This increased likelihood of receiving unequitable healthcare is important because it has been found to correlate with people with learning disabilities having a heightened risk of premature death compared to the wider population.
Why is the creation of Easy Read documents important? How do Easy Read documents contribute to improving health equity?
The creation of Easy Read documents is an important way to provide information to people with poor health literacy or intellectual disabilities. Easy Read documents are supported by the Accessible Information Standard (2018) which establishes the need for health and social care establishments to proactively ensure information is provided in a way that meets the needs of individuals accessing services.
Easy Read documents are usually created alongside adults who experience difficulties in accessing information. This leads to a multidisciplinary approach in generating the literature, ensuring it is easily understood by people with a variety of needs. The document itself contributes to improving health equity but the process of including people with lived experiences in its production is a key element to improving equity within healthcare.
The creation of the Easy Read Pneumonia leaflet is specifically important due to the 2020 LeDer report identifying that the most frequently recorded cause of death for people with learning disabilities between 2018 and 2019 was due to respiratory disorder. Bacterial Pneumonia was the most frequently recorded condition on certificate of cause of death for people with learning disabilities between 2018-2019. We were unable to find an Easy Read pneumonia leaflet and therefore decided to develop our own.
How did you go about developing these resources? Why did you select the specific design?
The Easy Read pneumonia leaflet was developed as part of an overall project to improve health literature which was conducted alongside the ‘Improve your Inhaler Technique’ QR Code poster that was developed last year.
We organised a multi-professional steering group who were keen to come together and assist in the development of the Easy Read pneumonia leaflet. This included a respiratory specialist nurse and consultant, alongside individuals who work with adults with intellectual disabilities and those with lived experiences of having an intellectual disability.
Important information was identified by the respiratory team to ensure evidence-based information was included, and those with intellectual disabilities were involved in the layout and wording of the leaflet. This was to ensure that the leaflet was clear, jargon-free, and understandable. A communications-inclusive team were also involved in the final design and development to ensure it conformed to current Easy Read and NHS guidelines.
What methods are you using to roll out the new materials?
Currently the leaflet has been shared by the Association of Respiratory Nurse Specialists (ARNS), and it has been shared with the East of England Community Acquired Pneumonia Steering Group as well as our local Acute Health Liaison, Adult Community learning Disability Teams, Community and Secondary Care Respiratory Teams.
The leaflet is available here.
What is some of the feedback you have received on the resources so far?
So far, the leaflet has had positive feedback from healthcare professionals and people with intellectual disabilities. Healthcare professionals have fed back that the leaflet is useful when people with learning disabilities are admitted with pneumonia. Adults with learning disabilities have fed back that it has been easy to read and that they did not know they could get a pneumonia vaccine or that they need to get a chest x-ray after they have had pneumonia.
What would you like to see more of in terms of improving the accessibility of healthcare information?
Personally, I would like to see more services taking a proactive stance to review the literature that they provide to ensure that an alternative is available if required.
In relation to respiratory disease specifically I would really like to see more Easy Read respiratory management plans for COPD and asthma alongside other respiratory conditions as well as more Easy Read information on Pulmonary Rehabilitation. We are currently working on an Easy Read Asthma management plan as the starting point to improve this.
Many people with learning disabilities have advised me they would like to have more visual based health literature where videos are used or pictures rather than words. It would be great to gain some funding to develop videos which are inclusive of people with disabilities on taking inhalers, managing an exacerbation and general information on different conditions provided in an easy-watch video format.