A diagnosis can help your child get care and support.
Getting the right diagnosis can be hard, particularly if your child has a mixture of conditions.
Getting a diagnosis can be confusing and upsetting. Take time to work out how you feel, what it is you’re questioning and why.
Ask yourself if you are questioning the diagnosis because:
it is not the one you hoped for or want for your child
you feel let down by the process and the professionals you’ve dealt with
you do not understand how the diagnosis was arrived at
you’re finding it difficult to accept the diagnosis
Challenging a diagnosis from your doctor and other professionals can be stressful. But no one understands your child more than you, and you can challenge a diagnosis you think is wrong.
Find out more by asking questions
It can be difficult to take in everything that health professionals say when they give you a diagnosis. You may be offered a follow-up appointment to ask more questions. If you are not offered a follow-up appointment, ask.
Use the time between appointments to prepare. Gather together all letters and correspondence you have about your child. Speak to people and organisations that can help answer the questions you have about the diagnosis.
You can ask your healthcare team to explain things to you again. They are there to help support you. Be open with them and try to work as a team.
Asking the NHS for a second opinion
You do not have the right to get a second opinion. But if you disagree with your child’s diagnosis, ask your doctor, consultant or hospital unit. Asking may feel like a big step, but you should do this if you feel it’s the right thing to do.
Ask your doctor what will happen if you ask for a second opinion, and what this could mean for your child.
If your consultant refuses, you can ask your GP to refer you to another consultant. If your doctor refuses, you may wish to move to a different GP.
Paying for a second opinion
Getting a private diagnosis costs money and does not guarantee more support or services. Local education and health authorities tend to prefer the original NHS diagnosis. But a private second diagnosis might:
help you to get a second opinion in the NHS
give you more time to talk to a consultant, which could help you to understand and accept the diagnosis, even if the private and NHS diagnosis are the same.
Talking about how you feel
Not getting a diagnosis you expected, or getting one you do not agree with, can be stressful. It’s important to get support from family, friends and healthcare professionals.
You may feel angry and frustrated that professionals are not listening to you. You may feel upset that your child is not getting the right care. But maintaining a good relationship with your professional team is vital as it’s likely that you’ll be working together for some time. Be open about your concerns but try to avoid letting your emotions damage relations.
Speaking to other parents with disabled children can be a good way of getting support and advice.