Information Living with thyroid disorders Medical Support This section outlines the kind of medical support you should expect to receive. It also suggests what you can do if you are unhappy with your child’s care. Your child’s care Once your child has been diagnosed with a thyroid condition, you should be referred to a paediatric endocrinologist. Most large hospitals will have a paediatric endocrinologist or a paediatrician with a major interest in endocrinology. Your family doctor will be able to find out who this is so that your child sees the right person. This person will be responsible for making sure that your child gets the correct treatment. They will carry out regular blood tests to make sure that your child is getting the right levels of medication. Your child’s medication is likely to change as they grow so it’s important that they have regular tests and check-ups. Your GP will be responsible for issuing repeat prescriptions for your child’s medication. The specialist or consultant will keep your GP informed about your child’s condition and their progress. Many parents find that endocrine nurses are very helpful in giving information and advice about your child’s condition. Contact your local Primary Care Trust (PCT) or hospital to find out whether they have an endocrine nurse you can talk to. Children with thyroid cancer will have a managing team responsible for their care. Building a relationship with your doctor(s) Thyroid conditions can be difficult to diagnose and at times you may become frustrated with what might seem to be the slow response of the medical profession! Here are some tips on how to build a relationship with your doctor: Be as clear as possible about your child’s symptoms. It can be useful to keep a diary to record how they are feeling and any anxieties that you and they may have. Write down what your doctor tells you as it can be difficult to take a lot of information in – particularly when you are worried about your child. Ask your doctor to explain anything you don’t understand. You should be given a copy of your child’s blood tests. Write down a list of questions or things you want to discuss at your appointment so that you don’t forget what you were going to ask. Take someone who knows your child well with you. This could be your partner, a friend or a family member. This can help you to feel more confident and they can help you to remember what the doctor tells you. You know your child better than anyone. If they are still unwell, keep going to your doctor and explain what is wrong. If you are still unhappy with your care, see the guidance below. Getting a second opinion You are entitled to request a second opinion. Although you don’t actually have a legal right to get a second opinion it is unlikely that you will be refused. If you would like a second opinion after getting advice from your GP, you can ask for a referral to another GP in the practice. If you would like a second opinion after seeing a consultant, you need to ask your GP to refer you again. The new consultant will be told that this is your second referral and will be sent your child’s records. For further information, see: How do I get a Second Opinion? (NHS website) and About the NHS: Your rights to Choice in the NHS If you are unhappy with your child’s care If you are unhappy with the care your child is receiving, you should tell your doctor. If the situation doesn’t improve, you can ask to see another doctor in the practice or make a formal complaint. To make a complaint, speak to the practice manager who will explain the complaints procedure. If you are unhappy with treatment from a hospital, you can contact the Patient Advice and Liaison Service (PALS). This could include issues with the care from nurses and doctors or with something like the appointments system. PALS exist in every hospital but you can also get more information from PALS You can also contact the Independent Complaints and Advisory Service (ICAS) who provide advocacy support to people who want to make a complaint about the NHS. You can get more information from pohwer.net Don’t be embarrassed or worried about complaining. You are entitled to get the right care and support for your child and you know them best. What if your child is ill but hasn’t been diagnosed with a thyroid condition? Thyroid conditions can often go undiagnosed in children because they are rare and your GP may not automatically test your child’s thyroid function. Make a list of your child’s symptoms. If your child has one or more of the symptoms described in the section on thyroid conditions you should visit your doctor. If they don’t suggest a thyroid function test, you can ask if it is possible to have one. If your doctor is reluctant to do this, see the guidance above – what to do if you are unhappy with your child’s care. If the thyroid function test comes back within the reference range but your child remains ill, you should discuss other causes with your GP.