Support for undiagnosed conditions

Sometimes professionals are unable to diagnose a child. This may be because your child: 

  • has a rare condition  
  • experiences features or symptoms linked to many conditions, making it difficult to make the correct diagnosis 
  • has symptoms that become more noticeable as they get older, leading to a late diagnosis 

If you are not able to receive a diagnosis for your child, you, your family and child will still be entitled to support.

Support should be based around the needs of the child; therefore, it is essential to collect evidence of their needs so that the right support can be put in place as early as possible. 

Seeking advice or referral for assessment

If you are a parent concerned about your child’s development you should speak to your GP, health visitor, school health nurse, social worker or early help coordinator, depending on who currently works with your child.  

If the concerns are severe or ongoing and you would like your child to be assessed for complex disabilities, you should see your GP. They can refer you to a Community Paediatrician to seek a potential diagnosis and to access specialist support. 

VoiceAbility

VoiceAbility supports people to be heard when it matters most. They’ve been supporting people to be heard in decisions about their health, care, and wellbeing for over 40 years.

They are an independent charity and one of the largest providers of advocacy and involvement services in the UK.

In South Gloucestershire, VoiceAbility will offer the following types of advocacy:

  • Independent Mental Health Advocacy
  • Independent Mental Capacity Advocacy
  • Relevant Person Representative
  • Care Act
  • General Advocacy
  • Deprivation of liberty safeguards (DoLS)
  • Independent Health care Advocacy (NHS Complaints)

If you have any questions you can get in touch by:

Parent support groups across South Gloucestershire will also support families with and without a diagnosis, more details are available on our Parent Carers support page. 

Testing for genetic conditions

A genetic test can often identify if a faulty gene or chromosome has caused a genetic condition.

The NHS choices website has information about genetics

Genetic Alliance UK have articles about how and why genetic tests are done, about the different types of testing for genetic conditions, and genetic services available within the NHS.

Further Information

The Community Children’s Health Partnership CCHP has information about what to do if you are concerned about your child’s development.

NHS Choices have an A-Z list of conditions

The Contact website has information about getting a diagnosis and support for when your child does not have a diagnosis and they have an A-Z list of conditions

VoiceAbility are an independent charity and one of the largest providers of advocacy and involvement services in the UK.

Genetic Alliance have information and resources to help you if you are living with a genetic condition.

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