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Advocacy for Neurodevelopmental Assessments

The Owl Centre Charity is increasingly aware of concerns from individuals and families across England regarding access to ADHD and autism assessments. Many areas are experiencing significant demand for neurodevelopmental services.

At the same time, NHS organisations are facing financial pressures and are being required to balance local healthcare budgets.

As a result, some providers have reported restrictions on the volume of assessments they are able to undertake, which may impact waiting times and access to care.

We believe that everyone has the right to timely assessment, diagnosis, and support. Understanding your rights and knowing how to advocate for yourself can help ensure your voice is heard.

What should you do if your are waiting for an Assessment?

1. Look at the website of your provider
If you have been referred for an ADHD or autism assessment, contact your provider and ask:

  • What their estimated waiting time is.
  • Whether there are any restrictions affecting assessment activity.
  • Whether your referral remains active.

Some providers may be unable to provide a confirmed assessment date. This is often due to uncertainty around commissioning arrangements or service capacity rather than a lack of willingness to provide care.

2. Contact the Patient Advice and Liaison Service (PALS)
If you remain concerned, you can contact your local Patient Advice and Liaison Service (PALS).  Their contact details will on your local ICB website.

PALS can:

  • Help you understand NHS processes
  • Raise concerns with local services
  • Support you in obtaining information about your care
  • Signpost you to formal complaints procedures where appropriate

3. Write to Your Member of Parliament (MP)
Members of Parliament can raise concerns directly with NHS organisations and Government departments.

  • When writing to your MP, consider explaining:
  • How long you have been waiting.
  • The impact the delay is having on your education, employment, family life, or wellbeing.
  • Any difficulties you have experienced accessing services.
    Why timely assessment matters to you and your family.

Personal stories are often the most powerful form of advocacy.

www.writetothem.com

4. Consider Escalating Your Complaint

If you have exhausted local complaints procedures and remain dissatisfied, you may be able to contact the Parliamentary and Health Service Ombudsman.

The Ombudsman can independently investigate complaints about NHS services and public bodies where appropriate. However, you must have exhausted all other complaints processes before contacting them.

www.ombudsman.org.uk

Why Your Voice Matters
Long waiting times for ADHD and autism assessments affect thousands of people across England. Many individuals wait years for assessment, diagnosis, and access to support.

Meaningful change is most likely to happen when people share their experiences, raise concerns through official channels, and engage with local and national decision-makers.

By speaking up, asking questions, and holding organisations accountable, patients and families can help ensure that neurodevelopmental services remain accessible for those who need them.

The Owl Centre Charity’s Position
The Owl Centre Charity believes that timely access to neurodevelopmental assessment and support is essential. We will continue to advocate for fair, transparent, and equitable access to ADHD and autism services across England and support individuals and families in understanding their rights and navigating the healthcare system.

If you are affected by long waiting times and would like to share your experience, we encourage you to contact us. Patient experiences help inform our advocacy work and strengthen the case for improved access to services nationwide.