Getting a diagnosis for your child

Knowing what to expect can help with the stress and worry of getting a diagnosis. Read about some of the basic steps and possible challenges involved.

The diagnosis process

The diagnosis process will vary depending on your child’s condition.

Some conditions are more straightforward to diagnose. Others take longer to identify. Your child may have a mix of conditions which can also make diagnosis difficult.

Visiting your doctor

Some conditions are identified at birth or just after. Others may become visible or show symptoms at various childhood developmental stages. This can be at nursery, school or even into adulthood.

There are various ways to get a diagnosis. These can include: 
  • the hospital or your health visitor referring you to a specialist or doctor
  • your child’s teacher or school referring you to an educational psychologist or a Special Educational Needs Co-ordinator (SENCO)
  • visiting your GP because you’ve noticed your child showing symptoms or physical difficulties.  
The GP usually co-ordinates your child’s diagnosis. They can run tests, scans or assessments and refer you to consultants or specialists if needed. You may also receive the diagnosis from test results and consultants through your GP. Some children may never get a diagnosis.

Tests and assessments

Some conditions have tests that will confirm your GP’s initial assessment.

Other conditions, or if your child has multiple conditions, can take more time. This is because some conditions do not have a standalone test or assessment. You may also be referred to one or more specialists or consultants. This can involve lots of different tests and assessments that all come together to create a picture of your child’s condition.

GPs or consultants may also run tests to discount other possible conditions. This is called ‘differential diagnosis’.

If your doctor is unable to give a definitive diagnosis, they may give your child a ‘working’ or ‘interim’ diagnosis. This is when your child gets support or treatment for the condition the GP or consultant thinks is correct. The doctor monitors the results of the treatment and then they may be able to diagnose the condition or continue with further investigations. 


Time taken to get a diagnosis

The time it takes to get a diagnosis varies. Every child, condition and situation will be different. The process could take weeks, months or years, and it can last into adulthood.

The doctor may observe your child against developmental milestones over 6 months or longer. This helps them to see if there’s a developmental delay gap and if it’s getting smaller or bigger.

You may not get a diagnosis because some conditions are too complex, are not known, or your child has a mix of conditions.

While it can be frustrating waiting for a diagnosis, each step of the process is important for getting the correct care for your child. You can speak to specific organisations for guidance about a potential condition and its diagnostic process, as well as any new tests. 

Explore the NHS conditions information pages. They also have some tips on caring for a disabled child.
The charity Contact has an extensive A to Z of conditions. There's information on support organisations, symptoms, causes, diagnosis and treatment.

Contact also have pdfs with guidance on living with a rare condition and living without a diagnosis.
SWAN UK (syndromes without a name) supports families of children and young adults with undiagnosed genetic conditions.

Setbacks

You may experience setbacks during the diagnosis process. Some processes take longer and there may be delays and cancellations.

Your child may also have more than one condition or the overall picture of their condition is more complicated. This can delay a diagnosis or you may not get one at all.

Ask your GP or consultant how long it might take for appointments, referrals or test results. If it takes longer, contact them to investigate whether there’s a problem or get you an update.

Managing the process

There are things you can do to help manage the diagnosis process so that you’re prepared and able to plan.

Identify who is co-ordinating your child’s diagnosis

This is usually your GP but not always. It could be a paediatrician, Special Educational Needs Co-ordinator (SENCO), a consultant or other health professional. Ask your GP who your point of contact should be if it's not them. 


Record your referrals

Make a note of every referral. This helps if you need to give a history to health professionals or you need to refer back to a stage in the process.

Keep a record of:
  • which doctor or professional is referring you
  • who they’re referring you to  
  • which hospital, clinic or organisation
  • the reason for the referral
  • the expected timeframe
  • who to contact if there is a delay
Have a checklist of everything you want to ask or get out of the meeting. Preparing for the appointment can help make sure you’re actively involved throughout and your questions or concerns are discussed.

Look after yourself

To look after your child, you need to look after yourself. Getting a diagnosis can be stressful. You may feel a lot of worry and anxiety. But try to find time away from the process. This could be:
  • taking some time for yourself, possibly going for a walk, having a bath or watching your favourite show
  • talking to a friend, family member or another parent who has been in your position about how you’re feeling
  • doing something fun with your family. The diagnosis process should not get in the way of you enjoying time with your child.

Get support and information from specialist organisations

There is a wealth of expertise available from voluntary organisations, charities and experienced parents.  

A-Z of impairment organisations
Scope’s online community


Concerns about services

It’s important to remember the diagnosis process can take a long time and is not always straightforward. If you are concerned about a service, start by contacting your GP or consultant for help.

If you’re having trouble with your doctors, you can get advice and support from the NHS Patient Advice and Liaison Service (PALS) to help resolve the issue.

In more difficult cases, contact the Patients Association or your local Healthwatch for guidance.

Making plans

Planning your day to day can be difficult when you’re getting a diagnosis. Many factors are out of your control and plans are likely to change.

Try to plan around your child’s needs and interests, as well as your family’s needs. You can then include appointments, tests or therapies in your existing plans. The focus is on you and your child instead of the condition.

Also try to avoid making plans too far in advance. They may become redundant when education systems or financial support changes. Your child’s personality, abilities and educational needs will also shape their future regardless of any plans you make. This is true for all children, with or without a condition.
 
So while some planning is useful, it’s worth considering if it will help you now or in the near future, or if it’s something that might change and can wait.