There is overwhelming evidence that tells us people with a learning disability are far less likely to survive health conditions, in part because they can find it more difficult to communicate what is wrong and be listened to. The 2021 LeDeR report, produced by Kings College London, which looks at the lives and deaths of people with a learning disability, looks at this. You can access it here www.kcl.ac.uk/research/leder.
RESTORE2™ was developed by NHS West Hampshire Clinical Commissioning Group in collaboration with the Wessex Academic Health Science Network for the social care sector. Many of Thera’s staff, including people with a lived experience of a learning disability, have become super trainers and passed on the important knowledge it provides to others within the sector.
RESTORE2™ Mini is a programme which helps family and support workers to notice soft signs of illness within people who struggle to communicate and share these in an effective way with doctors. This makes sure that concerns are taken seriously and helps to overcome common barriers like GPs not offering appointments easily, which can otherwise be very dangerous for people in poor health. RESTORE2™ Mini gives people the ability to feel confident to have these conversations with health professionals.
As someone with a lived experience of a learning disability, I know first hand the difficulties in communicating health needs to medical or support professionals. RESTORE2™ Mini exists to provide support in this situation.
I have been fobbed off by doctors or professionals in the past. It’s important we get the message out there and share this training so other people know, and can feel comfortable, that they have a say around their health.
RESTORE2™ Mini uses the “SBARD tool.” SBARD is an easy-to-use form of communication that lets people share information effectively. It stands for Situation, Background, Assessment, Recommendation, Decision, and has been lauded for its usefulness in healthcare situations.
In 2022, Thera ran RESTORE2™ Mini training sessions. Many people with a lived experience of a learning disability who work at Thera, became Super Trainers for the project. This includes Service Quality Directors and Quality Assessors. We believe the training is more impactful coming from somebody with a lived experience, who has a better understanding of why the training is so important.
It has certainly helped me understand that you have to be more assertive to make sure that your health needs, or the health needs of the person you are supporting, are being met.
More than anything, this training has been developed because of a need to help people communicate with health professionals. My executive assistant Emma did the training with me and spoke about how shocked she was at the figures:
I did the training and I was really, really, shocked at how high the percentages are for people with a learning disability, who die early due to preventable or treatable conditions not being picked up.
It is because of this that RESTORE2™ Mini is so essential for people to know about, whether they are a person with a learning disability, a family member or a healthcare professional. Over the course of this project Thera developed 71 RESTORE2TM Mini trainers who helped to deliver the training to 675 different carers/support workers. We estimate from this 530 people with a lived experience will be immediately positively impacted.
At Thera we are very passionate about making sure people with a learning disability get good access to healthcare. Our learning and development team have recently launched online training on RESTORE2™ Mini for our staff, to make sure they have the tools and knowledge they need to advocate for the people they support. We hope this will make a difference in improving health outcomes for people with a learning disability.