Getting a diagnosis can be confusing and upsetting. Take time to work out how you feel, what it is you’re questioning and why.
Are you questioning the diagnosis because:
it’s not what you expected?
you feel let down by the process?
you do not understand the diagnosis?
you’re finding it difficult to accept the diagnosis?
Challenging a diagnosis from your doctor and other professionals can be stressful. But you understand your child best, 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 can ask for a follow-up appointment to ask more questions. Use the time between appointments to prepare.
Gather together all the paperwork you have about your child. Speak to people and organisations that can help answer your questions about the diagnosis.
You can ask your healthcare team to explain things to you again. They are there to support you. Be open with them and try to work as a team.
Getting support from others
Not getting a diagnosis you expected or 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. 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.
If your child is on a pathway to diagnosis or has received a diagnosis in the last year, you could be eligible for Scope’s Navigate service.
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.