YOUnited Private Neuro Information

 

There is an increasing trend in families seeking ADHD/ASD assessments outside the NHS, either privately (self or insurance-funded) or externally (e.g. overseas). These vary in quality and often do not meet NICE standards:

 

NHS-funded support will only follow if the diagnosis is evidence-based and comparable to local NHS assessments. CPFT CAMHS uses expected standards (see Appendix 1) to determine validity. 

 

The guidance below applies to all primary and secondary-aged young people referred for NHS treatment following:

 

• Private assessment: Self or insurance-funded by a private provider.

 

• External assessment: Non-NHS and non-private (e.g. international).

 

• Right to Choose: Must be an NHS-commissioned provider with a valid ICB contract.

 

Note: In Cambridge and Huntingdon, primary-aged ADHD diagnoses not involving medication must go via Community Paediatrics for confirmation.

 

When will CPFT review a private/external diagnosis?

Only if NHS treatment/support is requested. Requests purely for an EHCP or ratification purposes will not be considered.

Accepted entry points:

• Referral to Younited for post-diagnostic support or treatment (e.g., medication handover).
• Referral into CAMHS via Core Assessment or trusted partners (e.g. Centre 33 or a Mental Health Support Team — MHST).
• Internal referrals from CPFT teams currently involved in care.

All external/private assessments are screened to ensure the diagnosis meets with NICE guidelines. This includes assessments from NHS clinicians working privately.

 

Key principles (please read carefully):

 

• Review and ratification of external/private diagnoses are subject to usual waiting times for new neurodevelopmental assessments to ensure equity of care.
• Mental health support (via CAMHS or another service) can continue without a diagnosis confirmation. There is no need to wait for a diagnosis.
• If a diagnosis does not meet standards, NHS treatment cannot proceed.
• Families are informed that outcomes may include non-ratification. This means that although the private diagnosis will remain, the young person will be unable to receive medication through the NHS. This can affect other interventions such as Education, Health and Care Plans (EHCP) so this needs to be considered carefully.
• If a private prescriber has started a child on medication, they retain responsibility for this unless the GP agrees to shared care. Parents remain responsible for the ongoing costs of private medication prescribing until the NHS takes over care.
• If the diagnosis is upheld following review with the local neurodevelopmental service, then monitoring and prescribing are taken over by the local neurodevelopmental service only after a youngster has been reviewed by a doctor or non-medical prescriber in the neuro service. Until this time, all medication monitoring and prescribing remains with the private prescriber..
• The primary intervention offered by the neurodevelopmental teams is parent workshops to support a shared understanding of how to best help the young person.

 

Referral Requirements

For ratification, the referral must include:

• A full diagnostic report
• All screening tools and questionnaires used in the original diagnosis.
• Any relevant supporting documentation (e.g. medication letters, Educational Psychology reports).
• Families and carers have been made aware upon consenting to an NHS referral that an outcome of the ratification processes may be that the diagnosis is removed.

 

For requests coming into Younited, all required information must be included . Requests which do not contain this information will not be accepted through Younited and will be sent back to the referrer.

 

Once a referral is accepted by Younited, the information provided will be sent to the CAMHS neurodevelopmental team to be reviewed and to decide next steps.

Once accepted by the team, the referral will be placed on a waiting list for consideration of ratification of the private diagnosis by the MDT. These are subject to the usual same waiting times as new assessment.

 

If the diagnosis is agreed, the referral will be accepted and usual processes (in line with the original referral request) will be followed.

If the diagnosis is not agreed we will write to explain the rationale and, with consent, we will offer a full or partial re-assessment, if appropriate

 

Final Review & Diagnosis Status

When the diagnosis has been agreed or reassessed, or not given, support will be agreed depending on the presenting need and circumstances

 

 

Referrals with Private Diagnosis Requiring Mental Health Support

If a young person is referred for mental health support with a private/external diagnosis:

• They will be assessed and treated through alternative CPFT CAMHS teams, unless the diagnosis has been ratified.
• Requests from other CPFT CAMHS teams for ratification should include a full copy of the original assessment. Requests will be added to the waiting list and will be subject to usual waiting times.
• If ratification occurs while on the CAMHS waitlist, and if clinically indicated, the referral will be transferred to the Neurodevelopmental Team.

 

Appendix 1 – CPFT CAMHS Neurodevelopmental Teams

Agreed Expected Standards

The below criteria are considered the expected standards of completion, following specialist screening which indicates that further neurodevelopmental assessment is required. Please note that based on clinical need, additional appointments or assessments may be required.

 

ASD

• In-person observation :  An in-person assessment is required, if possible an ADOS-2 (or a valid BOSA, if necessary and considered adequate based on overall clinical information). We will not accept a standardised assessment without the completion of a face-to-face direct observation.
• Detailed developmental history with sufficient family background and history (including information on family disorders and any safeguarding information).
• School information about ASD presentation and support strategies
• School information on learning levels included.
• Consideration of any mental health needs.
• Inclusion of a Social Communication Questionnaire (SCQ) if available.
• A formulation by an multi-disciplinary team of the young person’s needs and presentation.

 

ADHD

• Detailed developmental history with sufficient family background and history (including information on family disorders and any safeguarding information) – as agreed by the reviewing senior clinician.
• School information about ADHD presentation and support strategies.
• A Conners Rating Scale questionnaire (or similar) from both school and home settings.
• School information on learning levels included.
• Completion of an in-person QB test (where appropriate). If young person is unable to complete this then an observation of them in school is required.
• Young person seen at least once in person outside of the QB appointment.
• A formulation by an multi-disciplinary team of the young person’s needs and presentation.