Learning disability and autism resources
What is a learning disability?
There are three things which help the GP decide if someone has a learning disability, these could be:
- if your child is less able to understand new information and to learn new skills
- they are less able to cope independently than those without a learning disability
- this started before the age of 18 years old
What is the difference between a learning disability and a learning difficulty?
A person with a learning difficulty struggles in usually one area of learning, for example, they can have dyslexia or other conditions and may struggle with reading or writing, spelling or maths. Dyslexia, for example is a general disability and is not a learning disability.
If your child is Autistic but does not have a learning disability, they are unable to have an Annual Health Check, though this may change in the future.
- Questions to help you think if your child could have a learning disability
- What should I do if I think my child has a learning disability?
- Where can I get further information?
What is autism?
Autism influences how people experience and interact with the world. It is a lifelong neurodivergence and disability. Autistic people are different from each other, but for a diagnosis they must share differences from non-autistic people in how they think, feel, and communicate.
Being autistic means you may feel things and react to them differently to non-autistic people. You may find socialising confusing or tiring, and you may feel overwhelmed in loud or busy places. You may have intense interests, prefer order and routine, and use repeated movements or actions to calm yourself or express joy. You might mask your discomfort to fit in.
- What is masking?
- How many autistic people are there?
- The spectrum
- Understanding autism
- The “core characteristics” of autism needed for a diagnosis?
- Why are some people Autistic?
- Is Autism a disability?
- Think you or someone you know could be Autistic? Find out about diagnosis
Reasonable adjustments are small changes that can help people with a learning disability be treated equally.
The law says that reasonable adjustments should be put in place. It is your right to ask for reasonable adjustments when you have an appointment for your health.
Reasonable adjustments could be the way that staff treat you, or things you need when you are at your appointment.
Every person is different and will need different changes but there are some which are common.
Examples of a reasonable adjustment that you could ask for include:
- Staff who speak clearly and use easy words
- A longer appointment
- A hospital passport which tells people all about you
- A quiet place to way, or a private room
- Easy read information
- An appointment at a time which is better for you
- Support workers or family members with you
- Help from a learning disability nurse
- Better physical access and help to get around
- Staff may already put reasonable adjustments in place for you, but it is important that you tell them if you need anything else. It is your right to ask for reasonable adjustments.
What the Reasonable Adjustments Digital Flag means for patients
The Learning Disability Register is for babies, children, young people and adults who have a learning disability and are registered at their local GP practice.
The register lets the health staff at the GP practice know that a person has a learning disability and that the person may need reasonable adjustments.
What are the benefits of being on the Learning Disability Register?
A person or child with a learning disability will be able to get:
- An annual health check from the age of 14 or older
- A Health Action Plan
- NHS flu vaccine
- NHS COVID vaccine
If you are their main carer, you should also be registered as a carer to make sure that you can support them to attend appointments or to talk to professionals on their behalf. You may also be entitled to a free NHS carer’s health check.
The dynamic support register might be able to help you avoid a hospital admission. Self-referral process is now live.
Email the completed form to frimleyicb.dynamicsupportregister@nhs.net
CareLeD has been designed with and for people with a learning disability to help them access urgent and emergency care. Find out how by clicking the link careled-helping-yourself-pdf-1.pdf.
Help in hospital – Hospital passports
A Hospital Passport, sometimes called a Health Passport, tells the hospital about your healthcare, your learning disability, how you like to communicate and how to make things easier for you.
You can carry your hospital passport and show it to healthcare staff at the hospital.
It can help you get the care you need in an easier to understand way.
Hospital passports can get lost in hospital so it’s a good idea to have more than one copy.
You can ask for a copy of your hospital passport to be added to your patient record.
Victoria’s story of using her hospital passport
Watch the video about Victoria and how her hospital passport has made things easier for her
People with a learning disability often have poorer physical and mental health than other people.
It is important that everyone over the age of 14 who is on their doctor’s learning disability register has an annual health check.
An annual health check can help you stay well by talking to a doctor or nurse about your health and finding any problems early, so they can be sorted out.
If you’re worried about seeing a doctor, or there is anything they can do to make your appointment better, let the doctor or nurse know. They can make changes to help you; these are called reasonable adjustments.
Find out more about annual health checks in this easy read leaflet from Mencap
Watch Charlotte’s video - how the annual health check helps her to stay well and enjoy life.
What happens during the annual health check?
You might see different health care professionals, these might include a doctor, a pharmacist, a nurse or a healthcare assistant. They have all had extra training to be able to do the annual health check.
During the annual health check the health care professional will:
- Do a physical check-up, including weight, heart rate and blood pressure
- They may also ask you to pee in a small pot for them to check your urine, or ask you to have a blood test
- Talk to you about staying well and if you need any help with this
- Ask about things that can be more common if you have a learning disability, such as epilepsy, constipation or problems with swallowing (dysphagia), or with your eyesight or hearing
- Talk to you about your medicines to make sure you are being given the right medicines when you need them
- Check to see if your vaccinations are up to date
- Check how you are feeling if you have a health problem such as asthma or diabetes
- Check if you have any other health conditions
- Ask if your family or carers are getting the support they need
- Help make sure that things go well when children move to adult services at the age of 18
Information for patients:
The CareLeD tool for supporting people with a Learning Disability
CareLeD provides easy read information to support people with a learning disability accessing urgent and emergency healthcare.
For example:
- How to access urgent and emergency care
- How to get a Hospital Passport or Health Profile
- How to create your Social Story and what a Social Story might look like
- What to take in your emergency Hospital bag
Please use the link below for some helpful resources:
https://www.keele.ac.uk/media/k-web/k-research/careled-helping-yourself-pdf-1.pdf
A Dynamic Support Register (DSR) is a list used to identify individuals with learning disabilities and/or autism who are at risk of being admitted to a mental health hospital or experiencing a placement breakdown due to insufficient community support. The DSR aims to proactively identify and address these individuals’ needs to prevent unnecessary hospital admissions and ensure they receive the right support in the community. It’s a tool for local systems to understand their population’s needs and commission appropriate services.
Purpose: The DSR focuses on preventing inappropriate hospital admissions for individuals with learning disabilities and/or autism. It’s designed to help people with complex needs receive the right care and support in the community, rather than in a hospital setting.
Target population: The register includes individuals of all ages with learning disabilities and/or autism who are at high risk of hospital admission or placement breakdown.
Risk Assessment: The DSR utilises a risk assessment framework, often using a colour coded system e.g. red, amber, green, blue to categorise individuals based on the level of risk they face.
Integration with Care (Education) and Treatment Reviews (CETRs): The DSR is often used in conjunction with Care (Education) and Treatment Reviews (CETRs), which are independent meetings that review an individual’s care and treatment to ensure it is appropriate and meeting their needs.
Key Benefits:
- Improved Care: ensures individuals receive the right care and support in the community, potentially avoiding hospital admissions.
- Better Outcomes: aims to improve the overall well-being and quality of life for people with learning disabilities and/or autism.
- Efficient Resource Allocation: helps commissioners understand the needs of their population, enabling them to commission appropriate services effectively.
- Reduced Hospital Admissions: by identifying and addressing needs proactively, the DSR can help reduce the number of people admitted to hospitals unnecessarily.
This toolkit has been created together with people with learning disabilities, families, learning disability support staff, and healthcare professionals. It includes resources and approaches to support staff with end of life care planning with people with learning disabilities.
Bowel Cancer
Easy read guide to bowel cancer screening
Breast Cancer
Easy read guide to breast screening
Beyond Words, Easy Health and the film made by and for women with learning disabilities in partnership with NHS Bristol.
CoppaFeel have developed with Ansar Projects and Orchid which includes going for a mammogram, know your body, self-checking and signs of changes for breast cancer: https://coppafeel.org/resources-for-people-with-a-learning-disability/.
Cervical Cancer
What is cervical screening? - NHS
- All women aged 25 to 64 are invited by letter to cervical screening to check the health of their cervix. Cervical screening used to be called a smear test.
- Everyone with a cervix should go for cervical screening
- The cervix is the opening to your womb from your vagina
- It’s not a test for cancer, it’s a test to help prevent cancer
- During the screening appointment, a small sample of cells will be taken from your cervix.
- The sample is checked for certain types of human papillomavirus (HPV) that can cause changes to the cells of your cervix. These are called “high risk” types of HPV.
- If these types of HPV are not found, you do not need any further tests.
- If these types of HPV are found, the sample is checked for any changes in the cells of your cervix. These can be treated before they get a chance to turn into cervical cancer.
- the nurse or doctor will tell you when you can expect your results letter.
Accessible cervical screening with the right support for people with a learning disability Accessing cervical screening with the right support for people with a learning disability (YouTube video)
Read clinical publications, research and additional resources that support the ReSPECT process.
Patients, carers and healthcare professionals can access patient guides, leaflets, resources for young people, digital top tips, information for care homes and more via the links below, and catch up on the latest research and findings to do with ReSPECT.
Learning Disability Friendly GP Practice Project – LD Champions Network (in conjunction with and run by the Strategic Health Facilitators at Southern Health NHS Foundation Trust).
The Strategic Health Facilitators work with GP surgeries to ensure:
- There is a Learning Disability Champion in each practice,
- The surgery is person centred
- Reasonable Adjustments are offered as appropriate
- Good quality Learning Disability Annual Health Checks are offered
- And service users have a Health Check action plan in place after their Annual Health Check
Once a surgery or PCN has been signed off as Learning Disability Friendly, they are awarded a certificate, a Learning Disability Friendly logo to advertise on their website and in the practice, as well as access to the Champion’s Network.
If you would like to become a Learning Disability Friendly GP Practice or PCN, please review the following documentation:
What digital flagging means for patients
