ADHD and autism post-diagnostic support: what the Fonagy review expects

The Fonagy review (the independent review into mental health conditions, ADHD and autism, published by DHSC on 9 October 2026) says, in its chapter on autism, that "a diagnostic report and signposting alone do not constitute an adequate post-diagnostic offer". It asks for a guaranteed offer after diagnosis and real support while people wait, because people often get worse while they wait and a diagnosis often does not lead to treatment.

What this means for you

• The review treats the wait before assessment and the weeks after diagnosis as part of the service. Expect commissioners to ask what happens in both.
• NHS England plans national prices that include post-diagnostic support and follow-ups, so you will likely need to show what you deliver.
• GPs are taking on less shared care for medication started by independent providers, so a clear handover now affects whether your own patients get treated.

This article is part of our Fonagy review series. For the assessment itself, see assessment quality standards.

More people said their mental health got worse the longer they waited#

71% who waited over six months said they got worse, against 24% under two weeks#

The final report, chaired by Professor Peter Fonagy and published by DHSC on 9 October 2026, reproduces results from the Care Quality Commission's (CQC) 2024 Community mental health survey, as reported in CQC's State of Care 2024/25. The survey covered people aged 16 and over using NHS community mental health services in England. People were asked whether their mental health changed while they waited between assessment and first treatment (p318).

The share who said it got worse rises at every step:

• 24% of those who waited less than two weeks
• 33% at two to three weeks
• 40% at one to two months
• 54% at three to six months
• 71% at more than six months.

Over the same steps, the share who said it improved fell from 27% to 17%, 15%, 13% and then 9%. The rest said it stayed the same (49%, 50%, 45%, 33% and 20%). The executive summary calls this an almost three-fold rise (p19). It never levels off.

The longer the wait, the more people got worseChange in mental health while waiting between assessment and first treatment, by length of waitGot worseStayed the sameImprovedLess than 2 weeks24%49%27%2 to 3 weeks33%50%17%1 to 2 months40%45%15%3 to 6 months54%33%13%More than 6 months71%20%9%People aged 16 and over using NHS community mental health services in England: Care Quality Commission, 2024 Community mental health survey, as reported in State of Care 2024/25. These are not ADHD or autism waiting lists. Source: Independent review into mental health conditions, ADHD and autism, DHSC, 2026, Figure 15.1 (p318). Contains public sector information licensed under the Open Government Licence v3.0.

The survey covered community mental health services, and about one in five replied#

Two cautions. The survey covered people aged 16 and over in NHS community mental health services, not ADHD or autism waiting lists (p318). And only about one in five people replied; CQC gives the 2024 survey's response rate as 20%. The review's source note gives the sample size of CQC's 2025 survey, not the 2024 survey the chart comes from. The review still says autistic people often build up avoidable difficulties during long waits (p437). Its needs framework goes further: need that has lasted through a long wait should be treated as need that has grown, though the review calls its need descriptors hypotheses to test rather than validated thresholds (p592).

Support while waiting is becoming expected, as a bridge to assessment#

Only about 55% of clinicians surveyed said they routinely offer support while people wait for an autism assessment (p164). The review says this should change (p420), though support while waiting should be "a bridge to timely assessment, not a substitute for it" (p437).

For mild to moderate needs, waiting should include monitoring and support#

For people with mild to moderate needs, the review wants waiting to include:

• active monitoring and planned review
• evidence-based psychoeducation
• practical, parenting and peer support
• school or workplace adjustments (p420, p440).

For a provider with a long Right to Choose queue, expect commissioners to ask what happens to people on it, as well as how long it is.

A basic version is within reach for most clinics: regular updates, practical information, and a clear way for people to tell you things have got worse, which a clinician then reviews. See our guide to waiting list management.

Severe need gets rapid assessment, and mental health treatment should not wait#

People with severe impairment or warning signs such as self-harm, safeguarding concerns or imminent school exclusion should get a rapid, full specialist assessment instead (p440). Treatment for anxiety, depression, self-harm or other mental health problems should not wait until the neurodevelopmental assessment is finished (p420, p440).

Recommendation 2 asks for a clinically led review of current waiting lists#

Recommendation 2 also asks for a clinically led review of current ADHD and autism waiting lists. No one should be taken off a list without being connected to help, and people should have a clear, transparent way to appeal (pp21-22, p441). The report does not say who would review lists held by independent providers.

Diagnosis too often ends support instead of starting it#

40% of clinicians in autism services reported no ongoing post-diagnostic support#

Among the same clinicians, surveyed about autism services, 40% reported no ongoing post-diagnostic support, and only 12.6% described support that went beyond a single session (p164). One clinician told the review that services which used to employ occupational therapists for this work now say the waiting list is so large they can only do the diagnosis. A participant in an Ambitious about Autism focus group said they got no follow-up, only one or two links (pp164-165).

Autism pathways should explain every outcome, including no diagnosis#

The outcome matters too. One clinician said that after a long wait, concluding that someone does not have autism "can be devastating for a patient" (p162), and clinicians reported complaints from people who were not diagnosed (p181). For autism, the review asks pathways to give a formulation and a summary of needs whatever the outcome, so people who are not diagnosed still get an explanation and a route to support (p179). See assessment standards.

A diagnosis does not reliably lead to treatment#

Shared care, medication and private prescriptions all show the gap#

The review found three signs of a gap between diagnosis and treatment:

• Shared care. GP acceptance of shared care for medication started by independent providers has fallen to an average of about 62% and is still falling. The review gives two reasons: concerns about assessment quality, and doubts about whether ongoing specialist support is available (p329).
• Medication. New ADHD diagnoses have risen sharply since 2020, but the share of people who then get medication has fallen (p128). The review cites the ADHD Taskforce's estimate that only 15 to 25% of people with ADHD receive medication, against 70 to 90% who benefit in trials, and notes that changes in case mix, prescribing practice, patient preference and stopping treatment may also play a part (p129).
• Private prescriptions. Some people pay privately to keep their treatment going, which splits patients by who can pay (p329).

Shared care works only if the GP trusts your assessment#

GPs' doubts about assessment quality now affect your own patients. Shared care only works if the GP trusts the assessment and knows you will stay involved. Recommendation 5 asks for funded shared-care arrangements held to a national standard (pp444-445). Until then, the GP letter carries that trust: the outcome, the evidence behind it, any co-occurring conditions, a specific request and a named contact. See shared care agreements.

The review wants a guaranteed offer after diagnosis#

In its chapter on autism, the review says that at a minimum, a diagnosis should be followed by (pp165-166):

• an accessible explanation of the assessment
• a practical profile of strengths and needs
• identification of co-occurring mental and physical health conditions
• advice on reasonable adjustments
• clear routes back into care as needs change.

Recommendation 2 asks government to guarantee a post-diagnostic offer tailored to the person: explanation, psychoeducation, shared planning and a clear offer of further support, treatment or intervention if needed (p441). Chapter 19 adds peer support (p425).

An example plan for the first 12 weeks after diagnosis#

This is our own example, not a plan from the review, shown next to the report-and-links model the review criticises. The review sets no timeline. The feedback appointment, written plan, psychoeducation, peer support and route back in come from the offer the review asks for. The GP letter with a specific request, the week-6 follow-up and the shared care request are our additions, linked to related points in the review. The review wants the description of need started from first contact, before diagnosis; here it is updated after diagnosis. Timings are examples, not a standard.

The first 12 weeks after diagnosisOur example of a full post-diagnostic offer, next to the report-and-links model the review criticises. The review sets no timeline; timings are examples, not a standard.Report and links onlyThe report, a list of links and a copy to the GP. 40% of clinicians surveyed about autism services reported no ongoing post-diagnostic support (p164).No planned contactA full offerWeek 04812Week 0Feedback appointmentA clinician explains the assessment, the outcome and any uncertainty.Show details and sourceWeek 1Written planWhat support starts now, who is responsible and when it will be reviewed.Show details and sourceDescription of needOur additionA short summary of needs and adjustments for school, college or work.Show details and sourceGP letterOur additionThe outcome, any co-occurring conditions, and what the GP is asked to do.Show details and sourceWeeks 1 to 4Psychoeducation and peer supportInformation about the condition and practical strategies, matched to the outcome.Show details and sourceWeek 6Follow-up contactOur additionA planned check on how the plan is going and whether anything has changed.Show details and sourceWeek 8 onwardsShared care requestADHD medication onlyOur additionOnce titration is stable, a request to the GP with the titration record and specialist backup.Show details and sourceWeek 12Route back inA named way to come back if needs change, without a new referral.Show details and sourceOur example, not a plan set out in the review. The feedback appointment, written plan, psychoeducation, peer support and route back in come from the offer the review asks for; steps marked “Our addition” are not part of it. Source: Independent review into mental health conditions, ADHD and autism, DHSC, 2026 (page references as shown); DHSC press release, 9 October 2026. Contains public sector information licensed under the Open Government Licence v3.0.

The steps are a feedback appointment, a written plan, a description of need, a GP letter with a specific request, psychoeducation and peer support, a planned follow-up, a shared care request where ADHD medication starts, and a way back in without a new referral.

A description of need lets people share needs without the full report#

The person shares a short summary, not their clinical history#

Autistic adults told the review that diagnostic reports mix detailed personal history with the little a school or employer needs, so people share more than they want to (p398).

The review proposes a short description of need that sits alongside the diagnosis: how the person is functioning, what they find hard and the adjustments that follow. The person decides who sees it, can correct it and can withdraw consent at any time (p402). As Annex A puts it, "The description should travel; the clinical narrative should not" (p590).

Schools, colleges and employers can act on it before a diagnosis#

The review wants this description built from first contact, before any diagnosis (p414, p416). The duty to make reasonable adjustments under the Equality Act 2010 depends on substantial long-term impairment in day-to-day activities, not on a diagnosis, so schools, colleges and employers can act on a description of need without waiting for one (p402). The review does not recommend national adoption of its needs framework yet (p583), but you can use the idea now.

NHS England will consult on pricing post-diagnostic support; details are not yet known#

• Committed: NHS England will consult on national prices for NHS-funded ADHD and autism services, covering assessment, post-diagnostic support and follow-ups, with new payment rules planned from April 2027.
• Not yet answered: the guaranteed offer and the waiting-list review. The government will respond in its new mental health strategy.
• Not yet known: the consultation date, draft prices and how post-diagnostic support will be defined.

Our inference: if post-diagnostic support becomes a priced part of the pathway, commissioners will want to see what was delivered, to whom and when. Our post-diagnostic support pathway guide covers running costs.

Five steps bring your service closer to what the review asks#

1. List what someone gets from you in the 12 weeks after diagnosis and compare it with the plan above.
2. Write down what people on your waiting list hear from you and how often. Add regular updates, practical information and a clear way to report that things have got worse.
3. Make sure every outcome, including "not autistic", comes with an explanation, a summary of needs and a next step. The review asks this for autism; we would do the same for "not ADHD".
4. Draft a description-of-need template with your clinicians and test it with a few patients.
5. Rework your GP letter around a specific request, and record each post-diagnostic contact so you can show it when the tariff consultation opens.

Where Cerebric fits#

While people wait, Cerebric's patient portal shows families where the assessment stands and sends questionnaire reminders automatically. After diagnosis, the family receives education content matched to the diagnosis, the GP letter is shared securely, and shared care agreements are drafted for the clinician to review. Titration check-ins and follow-ups are booked and recorded. The clinician decides what goes into the plan; Cerebric sends it and keeps the record.