When you get a diagnosis

Many of us thought that getting a diagnosis for our child would be like getting the answer to our problems. We didn’t realise that having a specific diagnosis would come with its own set of pros and cons. For example, having a specific diagnosis for our children did not mean that they were automatically eligible for certain schools, or for benefits that we thought were appropriate.

“We were shocked when we eventually got a diagnosis, which we weren’t expecting to be serious.”

Sometimes, if you get a diagnosis, your child is automatically labelled – there’s no expectation of ability. On the other hand, some of us found that having a specific diagnosis was very helpful because we could start to read up on the condition, join relevant local or national organisations, find out about latest research and-perhaps most importantly-meet other parents in the same boat as us. It can also be a great asset when you’re applying for various benefits to be able to say ‘my child suffers from X syndrome or has Y disability’.

“We got our son’s diagnosis after years of being told there was nothing wrong, it was a real shock and I remember feeling devastated, even though we had known in our hearts for a long time, seeing it on paper feels completely different.”

We know that finding out what’s wrong can be one of the most stressful times for a parent, so we’ve thought about some of the strategies that helped us cope with this difficult time. It can be worth thinking about what you can do to make better sense of what you are finding out about your child. As a parent carer, you have the right to expect to be given information in a respectful and sensitive way, delivered by specially trained staff at all times.  Here are some useful things to consider when you have a meeting to attend:

  • If you are expecting news, take someone with you for support.
  • You may be very worried.  If so, try to turn your worries into something practical – a list of questions that you can ask to help you focus on the answers you need.
  • Ask if you don’t understand what has been said and don’t be rushed, take time to think.
  • Ask what will happen next, who you can speak to regularly for advice and where you can get more information.
  • Professionals cannot always tell you how things will turn out.
  • Sharing news with other significant people in your life can be really tough, so ask for help
  • Talk about how you are feeling with the rest of the family but avoid blaming each other.
  • Remember they are the same child they were the day before.

Sometimes parents want medical diagnoses confirmed. Usually this is not because they don’t trust the doctor, but simply that they need to feel absolutely sure that they have explored every possible avenue on their child’s behalf. Some doctors are very sympathetic towards these feelings. Your child’s GP or Consultant may be willing to refer you to a different Consultant for another opinion, but they don’t have to do this if they don’t agree that it’s necessary.

Parent carers who can afford to might choose to approach Consultants on a private basis. Private health care is very expensive and it is not at all easy to discover for yourself who is an expert in any particular condition. You may be able to get advice about these matters from:

If your child has a specific condition, the relevant local or national support group may be able to provide advice or help. Some of these organisations have medical experts of their own, or it may just help to talk with parents who have had to face similar situations or make the same tricky decisions. You can find many of these on:


Somerset Parent Carer Forum’s website provides opportunities for meeting with other parent carers, events or consultations that may be relevant to you. Signposting, news, e-bulletins and social networking pages that may be of further help to you.