What to do if you think your child's diagnosis is wrong

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.

If you disagree with your child’s diagnosis, ask your doctor, consultant or hospital unit for a second opinion.

Asking may feel like a big step. Ask your doctor what will happen if you ask for a second opinion, and what this could mean for your child.

If your consultant or doctor refuses

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.

Changing a GP (Citizens Advice)

How to get diagnosed as autistic (NHS)

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.

Not getting a diagnosis you expected or agree with can be stressful. It’s important to get support from family, friends and healthcare professionals.

Emotional support

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.

Speaking to other parents with disabled children can be a good way of getting support and advice.

Talk to our online community

Support groups for parents

Advocates

Having an advocate can help you make decisions and get the best outcome when attending hospital appointments. An advocate can:

• listen to your concerns
• help you know your options and rights
• give you information and advice
• help you contact healthcare professionals
• come with you to meetings or appointments

If you want a second opinion or to complain, an advocate can make sure you are heard.

Advocates for disabled people (Disability Rights UK)

Advocacy and involvement (VoiceAbility)

Patient Advice and Liaison Service (PALS)

The NHS has a Patient Advice and Liaison Service (PALS) that offers advice, support and information. They can:

• help with health-related questions
• help resolve concerns or problems when you're using the NHS
• tell you how to get more involved in your own healthcare

Each hospital will have a PALS officer. If you would like to make a formal complaint about an NHS service, PALS can support you with this.

What is PALS? (NHS)

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.