ongoing health appointments

If your child has a learning difficulty or disability or an ongoing medical condition, they may have to attend quite a few more healthcare appointments and assessments than their peers.

Sometimes it can feel like being your child’s personal manager, juggling appointments and supervising treatment at home.

Health advice from AmazeYou might have regular appointments with a paediatrician who focuses on child health issues, a specialist who focuses on just one bit of their condition or with different therapists who help them to work on acquiring certain skills or getting the right equipment.

To find out about all the specialist health services in your area – what they do and where they are located – visit your local authority’s Local Offer. You can see what’s available and how to about getting a referral to certain services if you are not getting the support you need.

Health information on Brighton & Hove’s Local Offer

Health information on East Sussex Local Offer

Making healthcare appoints work for you
Specialists tend to concentrate on just one bit of your child; speech therapists obviously focus on communication, physiotherapists on movement, and so on. This doesn’t mean they’re not interested in your child as a whole person, but the fact is that parents are the experts in in their own children. You see your child every day, you know what treatments he or she is receiving and you know how they affect your child. You are probably the one constant figure in your child’s care, and you understand them better than anyone else.

With this unique knowledge, you should expect to be treated by professionals as a respected and valued partner in all aspects of your child’s care. Download Amaze’s fact sheet which has tips for handling appointments with any professional:

Or read the heath appointment tips below:

Top tips for healthcare appointments

  • Plan ahead when you’ve got an appointment Have dinner sorted before you leave the house! Remember to look after yourself as well as your child and family.
  • Write your questions down and take them with you Give a copy of your questions to the doctor or therapist before you sit down so they have to address the issues that are important to you.
  • Keep a detailed diary and keep a record of the following:
    • Which health care professionals you’ve seen, along with their full name, job and contact details if necessary
    • Who has called you about your child’s care and when they called
    • When and how medicines or doses have been changed
    • Tests done and their results, along with dates and details
    • Any new symptoms or behaviour, or changes in symptoms and behaviour
    • Any big events or changes that have affected your child’s condition
  • Ask for a copy of every clinic letter or test result (including blood test results) to be sent to your home address. Often your GP and hospital will just write to each other unless you ask them to send you a copy too. If you have your own copy, you can take it to the next appointment in case theirs doesn’t arrive.
  • Tell them how symptoms have an impact on everyday activities. Use clear examples to explain how serious a problem is. For example, if your child’s wrist is swollen after school so they can’t hold a fork at mealtime, you could measure their wrist before and after school. Similarly, if anxiety is affecting your child’s sleep, you could keep a sleep diary.
  • Tell health care professionals about your and your child’s worries or fears. More information from a professional often helps reduce these fears. But they can’t guess what worries or frightens you. You will need to tell them.
  • Tell professionals your priorities and your child’s priorities. Let them know, for example,  if it’s important your child is well for a holiday or exam.
  • Ask, and ask again! Ask health professionals to re-phrase things you don’t understand. Ask them to write down difficult terms, or names of medicines, so you can remember them accurately later.
  • Before giving permission for a test, ask the following questions:
    • Why it needs to be done
    • What it will show
    • What preparation is needed (will your child will be able to eat beforehand for example, will they need to bring something to change into)
    • What the results will mean
    • When and how you will be told about the results

Above all, remember you know your child best. You can take time to decide and your views matter.

Getting young people involved in their own health
People with learning disabilities aged 14 years and above are eligible for an annual health check and health action plan from their GP practice. The annual health check appointment should be longer than a usual appointment, so there’s time to talk about a range of health issues and not feel rushed or confused. The health check can be done by a GP or nurse, or sometimes by both – each practice has its own arrangements.

For more information on annual health checks, visit www.england.nhs.uk/learning-disabilities/improving-health/annual-health-checks/

Or visit our info and advice section for young people, to find out more managing ongoing health care needs for young people with additional needs.

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