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/
Share your thoughts on home education
Parliamentary Education Committee – inquiry into home education
Instead of sending your child to a place of education, some parents are choosing to educate their child at home. This is known as home schooling, or elective home education (EHE). Doing so is a big decision and there's information on the Local Offer here to help you decide whether home schooling is right for you and your child and whether you decide to do it full or part time.
A recently launched inquiry will look at whether the current arrangements for home education give enough support for home educated children to access efficient, full-time and suitable education and what further measures may be necessary to make this work.
It will also look at how COVID-19 has impacted home education.
The Parliamentary Education Committee invites written submissions including those from parents on a range of points.
You can find more details and information on their website here.
The inquiry closes on 6th November 2020.
How is the return to education going for your children?
Our Hertfordshire parent/carer forum, (HPCI) is gathering the views and experiences of parents/carers of children and young people with SEND.
Please help us find out how the return to education is going for your child/children. The results will inform HCCs work with families and education settings as well as being fed into any visit that Ofsted/CQC might make to Hertfordshire. HPCI will share key points with their national organisation the NNPCF who meet regular with government departments including the Department for Education.
If you have more than one child with SEND then please complete a separate entry for each child.
The survey will be open until Sunday 8th November. https://www.surveymonkey.co.uk/r/R2SchOct20
If you would like help completing the survey then contact HPCI on 07840 360245
PLEASE - promote the survey to other parents who may not be members of HPCI's parent network. The impact of the survey is greater the higher the number of parents who complete it.
Update on a new SEND information, advice and support service
Our work with Kids Hubs, SENDIASS and Herts Parents Carer Involvement (HPCI), to develop a new SEND Information Advice and Support Service is going well.
We’ve looked at all the responses to the consultation we ran in Spring this year and are including this feedback in the service design. The service will deliver face to face and virtual workshops and one to one sessions in local community venues, as well as offer support over the phone and on webinars.