Is your child on the GP learning disability register?
Approximately 1.5 million people in the UK have a learning disability (NHS, 2018), of which less than 300,000 are registered on the learning disability register (NHS Digital, 2018).
The learning disability register, formally known as the Learning Disability QOF register is the list of people with learning disabilities that should be held by each GP practice in England (Public Health England, 2017).
We have recently been promoting the need to have an Annual Health Check – however, the first step to this means an individual must be listed on the learning disability register. According to our HCC data, there are an estimated 21,000 people with a learning disability living in Hertfordshire, of which only 5,000 are listed on the learning disability register. This means a significant proportion of people with a learning disability are unlikely to be receiving an Annual Health Check – an important part of detecting, treating and preventing new and unmet health needs. Being recorded on the learning disability register is essential for enabling people with learning disabilities to receive proper support from their GP practice.
The local Learning Disability Mortality Review (LeDeR)3 is aware of these issues and stated that the main reason people with learning disabilities are not recorded on the learning disability register is because they have not asked their GP practice if they can be put on the register, and/or have not been identified by their GP practice as having a learning disability.
The Transforming SEND Preparing for Adulthood (PfA) workstream is working with stakeholders to highlight the need for health checks, and our 'experts by experience' have included tips in our online information to help the young person who may be feeling nervous about the check. You can help us by making sure your GP has your child registered on the learning disability register. With your permission, or in some cases your carer or family members permission, your doctor can add more information about your condition to your summary care record (SCR). Everyone has an SCR – it is a summary of GP medical records such as medication or hospital appointments.
Let your doctor know that you would like to give consent for additional information (AI) to be stored on your SCR. This can include details of a learning disability, any physical/sensory disability, communication needs, or contact details of a carer or next of kin. This can really help with medical appointments as it means that health professionals will know about your latest medical needs and requirements.
Information from the Healthwatch annual review and Devon County Council learning disability register
Healthwatch easy read version is also available
The Downs Syndrome website is featuring information on the disability register - visit their website https://www.downs-syndrome.org.uk/news/learning-disability-register-information-for-parents-and-carer/