Demystifying NHS health pathways: who does what and how to keep care moving

Step by step

1. Use the urgent route when it is urgent

   Call 999 for a life-threatening emergency. Use NHS 111 for urgent physical or mental health help when it is not a life-threatening emergency, or when you are unsure which urgent service is right. Use the GP, dentist, pharmacist or existing clinical team for routine and planned care as appropriate. This guide does not replace clinical advice or an individual emergency plan.

2. Name the outcome before choosing the pathway

   Write what help is needed: diagnosis or assessment, treatment, therapy, equipment, wheelchair support, dental or sensory care, mental health support, neurodevelopmental assessment, continuing care, medication review, transition or a reasonable adjustment. The same child may have several pathways with different providers, criteria and waiting lists.

3. Find the correct gateway and local criteria

   A pathway may start with a GP, health visitor, school nurse, dentist, optometrist, SENDCo, hospital clinician, community professional or an allowed self-referral. Ask the current local service who may refer, its age and area rules, the evidence required and whether support can begin without a diagnosis. Do not assume that one area's gateway applies elsewhere.

4. Leave the referral with a complete receipt

   Ask for the referral date, named destination service, clinical question, priority, attachments, referral reference or UBRN where used, and a copy of the referral or its key wording. Check that communication needs, reasonable adjustments, risks, current professionals and the child or young person's views are included. Record who will chase it if no acknowledgement arrives.

5. Understand triage before assuming you are on a waiting list

   Triage may accept and book, accept for later booking, redirect, request more information, or return the referral with advice. Treat each change as a named stage. Ask what is happening, how you know that stage is complete, the current published wait or 'not published', what support applies meanwhile, which team owns the next action, who owns escalation and when the source was checked. For an NHS e-Referral Service rejection or return with advice, official guidance says the referrer must review the response and act; contact the referring practice if nothing follows.

6. Track the referral without relying on one screen

   Manage Your Referral and the NHS App can show some e-Referral and waiting-list information, but not every provider, pathway or appointment appears and updates may take time. Age, proxy-access and provider arrangements vary. Keep your own dated referral log and contact the referrer or receiving service when the digital record is absent, unclear or contradictory.

7. Ask five stage questions while waiting

   Ask: which stage am I at; what receipt, letter or action confirms it; what current normal wait is published and when was the source checked; what support or monitoring applies meanwhile; and who owns escalation if needs worsen or the stage stalls? Show 'not published' instead of guessing. Published averages are not targets, deadlines or guarantees, and changing figures should show a review date. The 18-week maximum-wait right is for qualifying non-urgent consultant-led treatment and has exceptions; it does not automatically govern every community, therapy, mental health or neurodevelopmental pathway.

8. Use patient choice only where the rules apply

   At a qualifying first outpatient referral, legal choice can cover the provider and clinical team, including some NHS-funded independent providers. Choice has exclusions and does not apply in the same way to every urgent, crisis, onward or locally commissioned service. Ask the referrer to explain the current choices, waiting times and why a requested provider is or is not available; use the current NHS Choice Framework rather than social-media claims about a universal Right to Choose.

9. Create a one-page health essentials sheet

   Parent-led health-navigation programmes recommend preparing rather than repeatedly retelling the whole history. Keep a short, dated page with diagnoses or working hypotheses, medicines and allergies, communication, sensory and mobility needs, risks, reasonable adjustments, current teams, equipment and the two or three questions for this appointment. Use a hospital or health passport where helpful, but keep clinical records and medication lists current separately.

10. Ask for accessible information and reasonable adjustments early

    Tell the referrer and service what makes access possible: accessible letters, easy read or large print, interpreter or BSL support, extra processing time, a quieter wait, first or longer appointment, carer presence, hoist or transfer planning, communication aids, sensory preparation or a learning-disability liaison nurse. Ask for needs to be recorded, shared on referrals and handovers, and reviewed. The Accessible Information Standard and reasonable-adjustment duties support this; each requested adjustment still needs an individual response.

11. Ask about the Reasonable Adjustment Digital Flag

    NHS England is implementing a national flag so publicly funded health and social care services can identify, record, share, meet and review a disabled person's adjustments. Full national provider capability is required by 30 September 2026, so implementation may still be uneven. Ask what is recorded now, check it is accurate, and continue to state essential adjustments when booking and arriving rather than assuming every system already shares them.

12. Make the appointment produce a clear plan

    Ask what question is being assessed, what evidence or tests are needed, what has been ruled in or out, what happens next, who will do each action and by when, what deterioration route applies, and who receives the letter. If spoken information is hard to process, ask for it in the required accessible format and take a supporter where appropriate. Contact advises asking whether a hospital has a learning-disability nurse when that would help.

13. Check the letter and close the loop

    Request or access the appointment letter, result or care plan, then check names, medicines, needs, decisions, actions and copied recipients. Report important factual errors promptly. If the wording says discharge, review as needed or referral elsewhere, ask exactly who is responsible, whether another referral has been sent and what to do if symptoms or needs change.

14. Make several teams work as one pathway

    Where paediatrics, therapies, mental health, school health, primary care, social care and education overlap, ask for a named coordinator or clearly recorded lead for each action, shared outcomes, an MDT or joint review when useful, and one current contact list. An EHC plan can record relevant health needs and provision, but it does not replace clinical care, a referral or the NHS body's responsibility for its own decisions.

15. Separate neurodevelopmental assessment from support now

    Autism, ADHD and other neurodevelopmental referral routes and thresholds vary locally. Ask what evidence is required, whether the referral is accepted, what support is available while waiting and how deterioration is handled. Schools, GPs and services should still consider needs, accessibility and appropriate support without waiting for a diagnosis; a diagnosis is not an emergency or crisis pathway.

16. Ask about continuing care and personal health budgets when needs are complex

    Children and young people's continuing care is an NHS assessment and decision route for needs that may require additional support because of their complexity, intensity or unpredictability. Ask the ICB or involved clinician how to request consideration and how health and social care will coordinate. A child or young person found eligible has a legal right to a personal health budget, and people eligible for NHS wheelchair services also have a right to one; the budget and safe care plan remain individually agreed.

17. Start health transition before a service cliff edge

    Transition is a planned process, not a birthday discharge. Ask each children's team for the adult destination, referral criteria, named lead, handover date, joint appointment, prescription and equipment continuity, consent or capacity support, and the fallback if no adult service accepts. Current NHS England guidance stresses preparation, formal transfer to a lead adult professional and support until the young person is established in adult care.

18. Use the quickest concern route, then formalise if needed

    Start with the clinician, service manager or referrer when safe and appropriate. Hospital PALS can explain services and help resolve concerns, but it is not a clinical or guaranteed fast-track service. For a formal NHS complaint, complain either to the provider or the commissioner, not both for the same complaint; ICBs commission most local NHS services. Ask for a coordinated response where several NHS organisations are involved. After local resolution, unresolved NHS complaints can go to the Parliamentary and Health Service Ombudsman.

19. Keep a calm evidence trail

    Use a one-page chronology with referral dates, acknowledgements, triage outcomes, calls, letters, missed actions, changes in need and the outcome requested. After an important call, send a short factual message recording what you understood and ask for corrections. This parent-tested method reduces repetition and exposes gaps, but it does not prove clinical urgency or create eligibility by itself.

20. Treat this as a navigation guide, not medical advice

    Local pathways, commissioning, clinical thresholds and individual risks vary. Check the current primary source and the named service. Seek urgent clinical help when advised, specialist advocacy for complex complaints, and legal advice where a serious rights or safety issue cannot be resolved through ordinary NHS routes.