There are 1.5 million people with a learning disability in the UK. According to a recent report conducted by MENCAP, over a third (37%) of healthcare professionals think that people with a learning disability receive worse quality healthcare than those without. Whilst three out of four (75%) people with a learning disability said their experience of going to hospital would be improved if hospital staff could explain things to them in a way that is easy to understand.
The COVID-19 pandemic has brought another layer of healthcare challenges to people with learning disabilities, both in terms of disproportionate levels of deaths from COVID-19 and the impact of the pandemic situation on this group.
One of the current tools to aid communication is the “hospital passport” which provides important information about a patient with a learning disability. Clinician feedback has suggested it is a valuable tool but is underused and could benefit if there was an app or other electronic version of the document.
Another tool for monitoring healthcare provision for people with learning disabilities is the annual health check. This annual health check is voluntary and from 2017 to 2018 55.1% of people with a learning disability who were on their GPs learning disability register had a health check.
People with a learning disability have a legal right for reasonable adjustments to be made so they are not discriminated against and can get the same benefits from healthcare services as everyone else. These include adjustments to length of appointments and communication materials. MENCAP’s “Treat Me Well” campaign to improve healthcare for patients with a learning disability has identified a need for “better communication, more time, clearer information”.
With funding from UCLPartners, Barts Health NHS Trust staff, under the guidance of Professor Amitava Banerjee, have partnered with software developers Maldaba to improve quality of care for people with cognitive impairment, specifically adults with a learning disability.
They have implemented Hear Me Now – an app and content-sharing remote web service designed for and with people with cognitive disabilities. The app can be used by the person or with support from family/carers. Information can be recorded in word, photo, audio, or video format which is then stored in easy-to-organise “boxes”. This information can then be readily shared with healthcare staff and carers, either in person or by using the internet-based sharing platform, also supplied with the app.
Implementation of Hear Me Now at Barts has been underpinned with elements of Real World Validation. A pilot was conducted at the Royal London Hospital and people with learning disabilities were involved in the project team to create the project literature.
Features on the app aim to enable:
- A better and quicker understanding of an individual’s needs, saving time in appointments and enabling easier and more effective handover processes
- Greater empowerment and patient-centredness as users can choose different ways of expressing their views and play a more active role in their consultations by recording their feelings and needs in any format
- Improved contact and communication as service users can access information on the app and the clinical team can use the system to contact service users in a range of ways
- More joined up care across places, professions and carers and better management of transition between services (including from child and adolescent mental health services to adult services).
Nearly 40 outpatients living with learning disabilities (and their family/carers) were supported with the Hear Me Know app at the Royal London Hospital between May 2019 and January 2021. People with learning disabilities, their family and carers, and staff were all trained on the app. Many self-reported improvement in quality of care.
After using the app for 12 months participants were followed up and 30 provided feedback. The majority (26/30) found the app helpful and easy to use and nearly two thirds agreed it helped communication at healthcare appointments. The primary use for the app was to record healthcare information and other uses, including collection of important information for emergencies, informing carers when no family were present at healthcare appointments, and keeping up-to-date on status of current health.
Really useful. Has all information there so (I) don’t need to explain. Especially when (parents) are not there ….. when (patient) is with carers. Parent of project participant
With key information about the user on Hear Me Now in an “About Me” section (developed with NHS Digital and Professional Record Standards Body in line with a new data standard), clinicians are better able to understand an individual’s needs, saving time in appointments. This clear understanding for staff allows for easier and more effective handover processes.
All ten members of healthcare staff that provided feedback agreed the app would be helpful at clinics. The majority (9/10) agreed that it would improve communication and the quality and consistency of care.
Easy to use guide, felt it will help me as a professional to know my patient well and deliver best\effective care. Royal London Hospital staff member
Future plans and next steps
Since the project started, further functionalities have been added to the app and dashboard. One of these is the use of curated content where the clinician can share relevant information including videos, websites, guidelines and audio specifically chosen for that patient to help meet their needs. Other projects have shown this to be valuable during the pandemic to help healthcare services keep in touch with people with learning disabilities and provide support during a time when isolation and vulnerability in this group was heightened.
The project was awarded a research dissemination prize from the British Society of Disability and Oral Health to present project findings at an international conference, and the project lead, Dr. Richard Fitzgerald, was awarded a DigitalHealth.London Digital Pioneers Fellowship through the project work. Findings of the project will be disseminated and shared through publication in quality-improvement and learning disability journals. With support from the project team and the DigitalHealth.London Pioneer Fellowship Programme, options are being explored to extend the pilot to more departments or organisations with the aim of establishing the app as a sustainable solution to improve communication for people with learning disabilities.
It was quite clear through the interviews with participants and their families that the Hear Me Now app was well-liked and effective. One of the most interesting findings for me were that family members reported a feeling of reassurance that all medical information was in one place if it was needed for emergencies. Alongside this it was interesting to see that the self-reported use of the app was high, suggesting that worries about digital literacy in this population may be unfounded. Dr Richard Fitzgerald, Academic Clinical Fellow in Special Care Dentistry at Barts Health NHS Trust, who ran the project as part of his National Institute of Health Research (NIHR) Fellowship
Maldaba now plans to conduct other evaluative projects of Hear Me Now to see how it can enable and improve the take up and quality of the annual health checks for people with learning disabilities. This project will be taking place in North East London NHS Foundation Trust supported and NHS trusts in the South West.
This research at Barts Health NHS Trust has helped show that Hear Me Now is easy to use and improves communications between patients and professionals across sectors and parts of the health and care system. We are looking forward to using the insight gained from this project to develop Hear Me Now further and to work with other NHS partners to enable new ways of delivering support within the healthcare system for people with learning disabilities.Lorenzo Gordon, Co-founder of Maldaba, the digital health company who have developed Hear Me Now