YOUnited Private Neuro Information

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

• ADHD: NICE Guidelines
• Autism: Recognition and Diagnosis
• Autism: Support and Management

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.

 

This advice applies to all primary and secondary-aged young people referred for NHS treatment following:

• Private assessment: Self/insurance-funded by a private provider.
• External assessment: Non-NHS, 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 Education Health Care Plan (EHCP) or ratification purposes will not be considered.

 

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):

• Reviews and ratifications of external/private diagnoses are subject to usual waiting times for new neurodevelopmental assessments to ensure equity of care.
• Mental health support (e.g., Core CAMHS) can continue without diagnosis confirmation.
• Private prescribers remain responsible for prescribing medication until NHS handover. 

  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 seen, all medication monitoring and prescribing remains with the private prescriber.

• If a diagnosis does not meet standards, NHS treatment cannot proceed. Families should be aware that outcomes may include non-ratification.

 

Referral Requirements

For ratification, the referral must include:

• Full diagnostic report.
• Screening tools/questionnaires used
• Supporting documentation (e.g., med letters, Educational Psychology reports).
• Families and carers should be made aware upon consenting to an NHS referral that an outcome of the ratification processes may be that the diagnosis is removed.

 

For referrals coming into Younited, all required information is listed with the referral form. Referrals 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 multi-disciplinary team. (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, if clinically indicated the referral will be transferred to the Neurodevelopmental Team.

 

Appendix 1 — 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

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 and strategies used to support the young person whilst at school

School information on learning levels included.

Consideration of any mental health needs.

Ideally, inclusion of a Social Communication Questionnaire (SCQ), although not essential.

 

ADHD

Where appropriate, completion of an in-person QB test – if child unable to complete then an observation of child in school.

Child seen at least once in person outside of the QB appointment.

Detailed developmental history with sufficient family background and history (including information on family disorders and any safeguarding information)

School information about ADHD and strategies used to support the young person whilst at school

School information on learning levels included.

A Conners questionnaire (or similar) from both school and home settings. 

A formulation by a multi-disciplinary team of the young person’s needs and presentation. 

 

Appendix 2 — Right to Choose Guidance from the Cambridgeshire & Peterborough Integrated Care System (CPICS)

You have the legal right to choose your provider for many elective services, including mental and physical health services, as outlined in the NHS Constitution and the NHS Choice Framework.

To be eligible for right to choose

•            You must be registered with a GP in England.

•            You cannot already be under care for the same condition.

•            The provider must offer NHS-funded services (not private-only).

 

Patient Responsibilities When Using NHS Right to Choose

·       Research available providers and services.

·       Or speak to your GP to understand your options.

·       When choosing a provider ensure they are accepting NHS right to choose patients (the chosen provider will be able to advise, or it will be on their service information / website).

·       Ensure the chosen service can provide assessment, diagnosis and treatment including follow up care. If the service offers assessment and diagnosis only, you will require a referral into NHS services for any required follow up / treatment and there may be significant waits for this.

·       Local mental health services cannot advise patients on which right to choose provider to access.

Request the Referral

·       You must ask your GP to make a referral to your chosen provider.

Travel and Accommodation

·       You are responsible for arranging and funding your own travel and accommodation if the provider is outside your local area.

·       In some cases, you may be eligible for help with travel costs through the Healthcare Travel Costs Scheme (HTCS).

Follow-Up Care

·       Be aware that follow-up care may not be provided locally.

·       You may need to return to the original provider for ongoing treatment or reviews. This includes being responsible for ongoing costs.

Transfer of care back into the NHS

·       If following a right to choose diagnosis you wish to receive ongoing care from the NHS this would require an additional referral into local services after completion of any right to choose diagnosis.  Local services will not accept referrals for patients for assessment and diagnosis at the same time they are waiting on a right to choose list.

You can find more information on the NHS Choices website and by via the following links: 

• NHS Patient Choice Leaflet
• CPICS Patient Choice Website