Information for parents and carers

Information for parents and carers about GP annual health checks for children and young adults with learning disabilities.

What do we know already?

Children with Learning Disabilities are just like any other children and can get all the usual childhood illnesses and infections. However, they can be very difficult to identify if it is the first time the GP has seen the child or young person.

If a child is known to a paediatrician it can be tempting for the parent or carers to go straight to the specialist support throughout their childhood and not make any contact with their GP.

However, when the child becomes 18, this specialist support will come to an end and the care is handed over to the GP. They may still get specialist support from adult learning disability services when required.

It is important to build a relationship with the GP from an early age. It is particularly important when their child is approaching transition to adulthood especially if the GP does not know the young person.

The annual health check is an ideal opportunity for the GP to become involved in your child’s care.

It also means that any reasonable adjustments that need to be made can be identified early and put in place for each appointment at the practice.

Watch our presentation below to understand more about the importance of health checks.

GP Learning Disability Registers

GP learning disability registers are a record of all the people registered with the practice that have a learning disability. This is different from the Register of Disabled Children that all local authorities are required to keep.

The GP learning disability register enables practice staff to identify children, young people and their families who may need extra help or support to access healthcare.

Anyone with a learning disability diagnosis can ask to go on it.

The benefits of being on the Learning Disability Register include:

Having an annual health check, if 14 or over.
Parents, carers and siblings are identified as carers.
A better understanding of a child or young person’s needs before they attend health or care settings.
Improved transition to adult services, as your GP will be aware of your young person’s needs and can be involved in any planning.

Anyone with a learning disability can ask to go on it. If your child is under 16, you can ask for your child to be added. If they are over 16, they may need to ask for themselves, or if they are unable to make this decision for themselves, you can discuss with their GP about making a ‘best interests’ decision using the Mental Capacity Act (2005).

One of the key principles of the Act is that any act done for, or any decision made on behalf of a person must be done, or made, in that person’s best interests. As part of this, there is an expectation that their primary carers would be involved. Is it important that the views of parents are taken into account as they know the child or young person best.

Visit the NHS website for more information on the Mental Capacity Act.

The Office of the Public Guardian support and promote decision making for those who lack capacity. You can contact them on 0300 456 0300.

You can also find out more in the SEND code of practice on page 20: ‘Participating in decision making’, and in Annex 1: ‘Mental Capacity’.

A first step would be to have a conversation with your GP.

The official definition of a learning disability is someone who has all of the following:

A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning) which started before adulthood (under the age of 18), with a lasting effect on development.

A learning disability is different for everyone. No two people are the same. A person with a learning disability might have some difficulty:

Understanding complicated information learning some skills
Looking after themselves or living alone

However, a learning disability is different from a learning difficulty (which may be overcome with the right support such as dyslexia or dyspraxia).

What is not a learning disability?

Mental health problem
Head injury after age 18
Autistic Spectrum Disorder (on its own)
ADHD
Emotional or behavioural difficulty
Learning difficulty

A learning difficulty does not impact general intelligence but creates obstacles to learning.

Benefits of having an annual health check

Your young person can build their confidence in going to the surgery, and their familiarity with practice staff.
Identification of any previously undetected health needs or health conditions.
Health needs are acted upon, for example, referrals to other health care practitioners.
GP’s and practice staff can get to know the person better when they are not unwell.
Development of a Health Action Plan.
Link to the local authorities to make sure all Education, Health and Care Plan reviews from Year 9 onwards include a focus on preparing for adulthood, this is the health outcome.
Additional information can be added to the Summary Care Record which can ‘flag’ your child or young person’s needs or reasonable adjustments so that all healthcare professionals that care for them are aware.

Summary Care Records

Summary Care Records are a summary of your GP medical records. They usually include basic information that can be accessed by any health practitioner, for example, medications and allergies.

Additional information can be added to a Summary Care Record that would be useful for other health practitioners to know. You can ask for this information to be added to your child or young person’s Summary Care Record.

Information that might be added includes:

diagnosis or health conditions
any reasonable adjustments needed (quiet room, longer appointments)
how your child or young person communicates. Having this extra information readily available means that any health practitioner that sees your child or young person should know the important information about them before the appointment.

More information on summary care records is available on the NHS digital website.

What are reasonable adjustments?

Reasonable adjustments are changes people must make so that someone with a disability can use or access something just as easily as everybody else.

Some examples of what a reasonable adjustment might be are:

making sure there is wheelchair access
having a ‘quiet’ waiting room
providing easy read appointment letters
giving priority appointments or first appointments
longer appointments if more time is needed
home visits if attending the surgery causes distress.

Download a PDF reasonable adjustments letter template you can send to your GP.

What to expect at an annual health check

You may be asked to prepare for your child or young person’s annual health check by filling in a questionnaire. This will give you the opportunity to highlight anything you or your child or young person would like to discuss, or if there might be any elements of the health check that they may find difficult or distressing. It also helps the GP to know as much information as possible prior to the appointment.

During the health check, the GP or practice nurse will:

do a general physical check which may include weight, heart rate, blood pressure and taking blood and urine samples
ask about things that people with a learning disability often have problems with, such as epilepsy, constipation or problems with swallowing
review medicines
check any existing health problems such as asthma or diabetes
discuss any other health appointments
ask about the support you are getting
discuss transition planning
discuss how to stay healthy and offer general healthy living advice where appropriate
discuss and agree on the Health Action Plan.

Flu vaccine

From October your child or young person will be offered the Flu vaccine. This is free. Don’t worry if they are scared of needles, they can have a nasal spray instead.

Health Action Plans

Health Action Plans (HAPs) are care plans that detail what is needed to keep your child or young person healthy.

This should include actions by the GP and other health practitioners, and can also include actions for you and your child or young person.

HAPs should as a minimum include goals for health care practitioners involved in your child’s care and your child’s GP to work on together.

Download a Health Action Plan template as a PDF document.

What to do if your GP does not offer annual health checks

Although most GPs now offer annual health checks, they don’t have to. If your child or young person has not had an annual health check:

Check that they are included on the Learning Disability Register
Ask their GP if they will do an annual health check
If their GP is unable to offer an annual health check, ask if you can go to a nearby surgery to have it done. Many GP’s now work closely with other local GP’s so may have an arrangement.

If you are unable to access an annual health check, contact your local Learning Disability Community Team for advice or you can email the LSCft Learning Disability Health Facilitation Team who will be happy to help. They should be able to help you find a local GP who offers annual health checks. If you are still unable to access the annual health check you have the option to move to a GP surgery that does offer them.