Getting a diagnosis

Around the time of diagnosis, parents can go through a range of emotions, including shock, denial, grief and anger. Parents can be anxious about how they are going to cope and provide the care their child needs. 

Many families say they would like to be able to talk to another family who has a child with a similar condition. Many parents talk about feeling isolated and alone. 

Parents will need information about how the condition might affect their child, what support is available and know what the future might hold. This information helps them understand their options, take decisions and feel more in control of the difficult situation they find themselves in. 

Why families might have problems during diagnosis 

Families often search the internet for medical information, which can be a source of both good and misleading information. Inaccurate information can add to a family’s confusion and distress and might cause them to lose confidence in the professionals supporting them. 

Overwhelming families with masses of information can add to their stress and feelings of inadequacy. It is better to provide an overview of what information and support is available, and where to go for more details if and when they need to. 

How a family is supported at this time can impact on how they cope and adjust to their situation. 

How can you can help families during diagnosis 

• help parents find condition support groups who can provide more detailed information about specific conditions 

• help parents judge the reliability of medical information found on the internet 
• tell families about additional support which can be provided by both statutory and voluntary local organisations 
• let the family know they are welcome to come back for further information or advice, whenever they need to 
• make sure families know their child is still welcome and can be supported to take part in all activities at your centre 
• see the child first and foremost as a person, rather than a condition or disability, and talk positively about their achievements. 

How Contact can help 

We have lots of information and resources that you can share with families or direct them towards. 

Parent support groups 

Support groups offer parents the chance to meet other families with a disabled child. Many groups are set up around particular disabilities and rare conditions. Find out more on our parent support group page

Parent guides 

Our parent guides are free to download or to order in print from our helpline. The following guides might be helpful to parents during diagnosis: 

• Living without a diagnosis [PDF] - for parents who are trying to find a diagnosis or who have been told there isn’t one for their child. 
• Living with a rare condition [PDF] has information and resources for parents whose child has been diagnosed with a rare condition 
• Developmental delay [PDF] has information on milestones for children and what do if parents are concerned 

For more parent guides on topics such as NHS services and understanding your child’s behaviour, see our  full publications list [PDF]

Online information 

We have lots of advice and information on our website that you might want to share with parents, including: 

• A-Z of medical conditions - reliable, medically approved information on more than 400 medical conditions, including rare syndromes, and support groups for them 
• finding medical information on the internet – guidance to families about what is reliable medical information 
• all about diagnosis - for both parents going through the process of living with diagnosis and those living without one.