Books Beyond Words - involving people with learning disabilities

Involving a group of people with learning disabilities was key to the successful running of an RfPB-funded feasibility study using a unique approach to help patients manage their epilepsy.

Epilepsy is a common health condition affecting people with learning disabilities. People with epilepsy and learning disabilities find it difficult to manage their illness and as a results it leads to more deaths than in those who live with epilepsy and don’t have a learning disability.

Books Beyond Words

Epilepsy is hard to control with drugs and 60-70% of people with learning disabilities will continue to have seizures despite medication. With very few alternatives available, Books Beyond Words - books, services and training for people who find pictures easier to understand than words - became the focus of the study from Hertfordshire Partnership University NHS Foundation Trust, as the team set out to evaluate the resources for people with epilepsy.

The team knew from working in conjunction with psychiatrists at the local NHS Trust that Books Beyond Words were being used, but the impact on patients had never been assessed, they set out to address this with a trial aiming to recruit 40 participants. Patient involvement was central to the study from the off and remained so throughout.

Involving people with learning disabilities

Patient and public involvement (PPI) began before the study started when the team presented to public and patient groups and gathered their input into the study design. This consultation led to a number of changes from initial plans - for example the suggestion, and subsequent help, to develop easy read versions of materials including consent forms.

This was just the beginning and it was during the study that the team really started to reap the rewards of involving patients and the public in the project. Management of the study was made easier with a reference group - an existing stakeholder group made up of adults with learning disabilities, carers, people with both learning disabilities and epilepsy, and care professionals - feeding back every quarter.

Embracing change

The reference group added a pragmatic element that enabled the team to make changes throughout the study. A significant change that came from the reference group was the introduction of patients meeting with a research nurse who introduced the study and the opportunity to be involved so that participants didn’t feel coerced into taking part by their Doctor.

The reference group were able to provide guidance on recruitment and the team responded to their input. Rather than going for easier options, such as recruiting people with milder learning disabilities, they took on board the opinions of the group and persevered to involve people with a wide range of learning disabilities in the study.

Dr Silvana Mengoni on her PPI experience whilst working on the project said:

“Patients have a valuable voice that often isn’t heard in research. Often PPI happens at the beginning of a study to help design it, and then at the end for disseminating results but it can be largely overlooked during the running of study. This was a crucial time for us to be engaging with our reference group and our study changed in a number of ways as a result of their input”

They say nothing worthwhile is easy

PPI is a bit more complicated when involving people with disabilities, the team were however committed to involvement so overcame these complexities and a very positive experience followed. The efforts of the team did not go unnoticed and in 2015 they received a CRN carer involvement award for their commitment to PPI!

When asked if they’d recommend the study one of the carers involved said:

“Yeah, I just feel strongly that you’re not going to move forward with things for other people if you don’t do these sorts of things”

The feeling from participants themselves was also very positive and this became clear from the responses in a questionnaire used in the study:

“I liked it ‘cos it gave me chance to tell people what I’ve got.” (On what they thought of being involved in the study).

“I’m glad to help you get to know about my epilepsy.” (On taking part in the study)

“It was very helpful to learn about it [epilepsy].” (On the use of the Book Beyond Words).

It’s onwards and upwards for the team as far as PPI is concerned - as they go forward with their research they are working with a co-applicant who has learning disabilities. With a strong track record behind them they look set to continue paving the way in this area - we look forward to hearing about future awards for the trophy cabinet and lessons learnt from the team.


This study A randomised controlled feasibility trial of the Books Beyond Words intervention to improve the management of epilepsy in people with learning disabilities was carried out by Professor Bob Gates and team at Hertfordshire Partnership University NHS Foundation Trust in collaboration with the University of Hertfordshire, the University of Cambridge, the University of East Anglia and the University of West London (PB-PG-0213-30042). The broad collaborative team approach to this work meant wide methodological, academic and professional expertise was applied to the project in addition to the patient and public involvement.