Defending your Right to Choose diagnosis

Why this matters

When you finally receive a diagnosis, it can be life-changing. It can help you make sense of your experiences and understand what support might help. Being told afterwards that your diagnosis isn’t valid can feel deeply unsettling. Parents have shared how disheartening it is to be sent back to the beginning of the system, especially after long waits and considerable emotional strain.

We understand how difficult this situation can be. Many families turn to Right to Choose because they have been waiting a long time for an NHS autism assessment, or because their child’s needs have reached crisis point. Being told that an NHS-funded diagnosis “doesn’t count” adds avoidable stress and can delay essential support.

How the NHS approves Right to Choose providers

Under the NHS Constitution, people in England have a legal Right to Choose their provider for most consultant-led services, including autism assessments. A provider can only offer assessments through this route if they have gone through a formal approval process with an NHS commissioner or an Integrated Care Board (ICB).

This approval process is detailed and specific. Providers must show that they meet all the relevant NHS commissioning standards, including:

• meeting national service specifications

• employing appropriately qualified clinicians

• having strong clinical governance and safeguarding processes

• following NHS rules for data protection and record-keeping

An NHS contract must be in place before the provider can appear on the Right to Choose pathway. This contract confirms that the service is competent, safe and authorised to deliver NHS-funded diagnostic assessments.

Once approved, providers must follow NICE guidance and take part in routine NHS quality monitoring. They must maintain full clinical records and issue diagnostic reports that are suitable for NHS use. The fact that a provider appears on the Right to Choose list therefore means the NHS has reviewed and accepted the service, its clinicians and its assessment processes.

What this means for families

If a provider is approved by the NHS to carry out autism assessments, then the diagnoses they issue are NHS diagnoses. Families should be able to rely on them when accessing support across the system.

It is not reasonable for one part of the NHS to commission a provider to deliver assessments, and for another part to then refuse to recognise the outcomes of those same assessments. When this happens, families are left without clarity and a clear way forward — and this can have a real impact on everyday life.

By approving a provider for the Right to Choose pathway, the NHS has already accepted that:

• the assessment team is appropriately qualified

• the service follows national guidance

• the assessment process meets NHS standards

• the diagnostic reports produced are suitable for NHS use

Families who use the Right to Choose route are entitled to expect that their diagnosis will be treated with the same respect and validity as any other NHS-funded diagnosis.

Our position

The PDA Society believes that NHS services should recognise diagnoses issued by NHS-approved Right to Choose providers. Rejecting these diagnoses raises questions about fairness, consistency and the NHS’s duty to provide lawful, timely access to assessment.

Families should not be placed in the position of having to repeat an assessment they have already completed through an NHS-funded route. If an NHS team disagrees with a diagnosis, they should clearly explain why and point to specific clinical reasons, not the route through which the assessment was accessed.

Parents and adults who face this situation have every right to challenge such decisions and request a clear justification. It is reasonable to ask why a diagnosis from a provider that the NHS itself has authorised is not being accepted.