Annual health checks for young people with a learning disability

Annual health checks for young people with a learning disability

Our trustee and retired GP Clare Peck explains how to make the most of the annual health checks that GPs are offering for young people with a learning disability from the age of 14 years.
  • All patients from the age of 14 years with a learning disability are eligible for an annual health check. Most GP surgeries in Sheffield offer this service, but they don’t have to.

    The idea behind the annual health check for people with a learning disability is to try and address the well-known fact that people with a learning disability often have poorer physical and mental health.

    The ‘journey’ from getting a new symptom to receiving the correct treatment has many steps which can be a huge challenge, especially if you have a learning disability. There is a need to understand the significance of new symptoms, to know how to access the correct appointment, to have plenty of time to communicate the problem with a nurse or doctor, and to be able to understand and act on the action plan. Clearly, if any of those steps don’t happen, poor health outcomes are likely.

    In addition, having a learning disability may increase the difficulty a person faces in making healthy decisions about eating, exercise, contraception, use of alcohol and smoking.

    The annual health check is an opportunity, when your child is well, to meet the primary health care team (nurse or GP) and go through a checklist to try and avoid problems getting missed. Management of conditions such as asthma, epilepsy or constipation can be discussed. It is a time to check healthy eating and weight, and screen for conditions such as diabetes or high blood pressure that are easily missed. It is a time to arrange blood tests if needed and to plan vaccinations for flu, tetanus and – if advised – Covid, both for your child and yourself as a carer.

    To improve the ‘journey’, it really helps if your GP has the best information on your child’s computer record.

    Here are some tips to help you get the most out of the appointment:

    • Make a list of the different health issues that affect your child, so that you can check the GP has them all correctly summarised on the computer.

    Hospital letters will all be stored on their record, but sometimes a diagnosis can get lost if it has not been transferred to the ‘Active summary’ page. The ‘Active summary’ is a list of the most important problems, to be seen at first glance when the record is opened by a clinician. For example:

      • Vital information such as a hearing impairment may be mentioned in a hospital letter, but may not have been recorded as a specific diagnosis and so is not obvious to a clinician on a first meeting.
      • Your young person may have ‘learning disability’ and ‘epilepsy’ on their Active summary, but the reason appointments are so tricky may be more due to ‘severe anxiety’, so you could discuss adding that.
    • List any health concerns that you currently have about your child.

    For example, concerns about deteriorating mobility or constipation getting worse are issues that can be addressed (hopefully you will receive a questionnaire before the appointment to prompt you).

    • Think about asking for reasonable adjustments to be added to the notes. This is usually an alert that flags onto the screen or is displayed at the top of notes and seen by reception or clinical staff as soon as the notes are opened. For example, needs quiet waiting area, longer appointments, the best way to communicate… (You don’t need to wait until your child is 14 to do this!)
    • If your child has a complex history, consider meeting with your GP first, without your child (assuming their consent), to bring your GP up to speed. This could also be a time to share the challenges you and your family are facing, which the GP may be unaware of.
    • Make sure your child is accompanied by someone who knows their medical problems well. The nurse or GP will be able to do a better job if they have good information.
    • Do you need to introduce your child slowly to the practice to get them used to having weight monitoring, blood pressure checks or blood tests? Discuss this with the GP or nurse if needed.
    • If your child has autism and a learning disability, ensure that these are both entered under separate headings on the computer record. This ensures they are on the learning disability register and so should receive an invitation for the annual health check.

    A person with autism who is not considered to have a learning disability would not be called for an annual health check at present. However, this is clearly a grey area as many people with autism would still find access to health services very tricky. In Sheffield, there is a plan to introduce annual physical health checks for adults with autism, but no start date has been set for this.

    There is, however, an expectation that GPs will make reasonable adjustments for people with autism and so it makes sense to discuss this with your doctor to ensure the notes are flagged accordingly.

    More information and a video about the annual health check


    If your child is eligible for an annual health check but hasn’t been invited

    Although most GPs now offer annual health checks, they don’t have to. If you think that your young person should have been invited:

    • Contact your GP and ask if your child is included on their learning disability register. This register helps practice staff to identify patients who may need extra help or support. Anyone with a learning disability can ask to go on it. It is for people of all ages, and you don’t need to have a formal diagnosis of learning disability.
    • If your child is not on the register, ask the surgery to include them and offer them an annual health check.
    • If the surgery is unable to offer an annual health check, ask if you can go to a nearby surgery to have it done.

    If you are unable to access an annual health check for your child, please email syicb-sheffield.childrenscommissioning@nhs.net


    Carer status

    Make sure your GP has coded your notes (and those of other relevant carers) with an ‘Is a carer’ code, so that you get called for flu vaccines and up-to-date Covid advice.

    A carer is anybody who looks after a family member (including children under 18!), partner or friend who needs help because of their illness, frailty or disability. All the care they give is unpaid.

Page last updated: 30th September 2022