Why Is Getting Help So Hard?
If you're struggling to access support for your child, you're not alone. The system is overwhelmed, underfunded, and confusing. This guide helps you navigate it and get what your child needs.
🚨 The Reality:
- Long waiting lists: CAMHS 12-18 months, autism assessment 2-3 years
- High thresholds: "Not severe enough" for help
- Gatekeeping: Services say "try this first" endlessly
- Poor communication: Between services, with families
- Postcode lottery: Huge variation across UK
It's not you. The system is broken. But knowing how to navigate it helps.
Who Does What?
| Service |
What They Do |
| GP (General Practitioner) |
First point of contact. Refers to specialists. Prescribes medication. |
| Health Visitor (0-5 years) |
Developmental checks, early concerns, parenting support. |
| CAMHS (Child & Adolescent Mental Health) |
Mental health support: anxiety, depression, OCD, eating disorders, trauma. |
| Neurodevelopmental Team |
Autism, ADHD assessments. Sometimes separate from CAMHS. |
| Paediatrician |
Medical issues, developmental delays, coordinates care. |
| Educational Psychologist |
Learning difficulties, school support, assessments for EHCP. |
| SALT (Speech & Language Therapy) |
Communication, speech delays, eating/swallowing difficulties. |
| OT (Occupational Therapy) |
Sensory processing, fine/gross motor skills, daily living skills. |
| Social Services |
Safeguarding, disability support, respite, family support. |
⚠️ Common Misconception:
"CAMHS does autism/ADHD assessments" - Sometimes yes, often no. Many areas have separate neurodevelopmental services. Ask your GP which pathway applies locally.
Getting the Most From GP Appointments
Your GP is the gatekeeper. A good GP appointment gets you referrals. A bad one wastes months.
📝 Before the Appointment
- Book a double appointment if discussing complex issues
- Write down your concerns - specific examples with dates
- List what you've already tried (shows you're not overreacting)
- Bring evidence: School reports, incident diary, videos of behavior
- Research local referral pathways (NHS website, parent forums)
- Decide what you want: Referral? Medication? Advice?
- Bring support person if you struggle to advocate
💬 During the Appointment
Opening script example:
"I'm concerned about [child's name]. They're struggling with [specific issue]. It's been happening for [duration] and it's affecting [school/home/wellbeing]. I've tried [strategies] but it's not improving. I'd like a referral to [service]."
Be clear and factual:
- Use specific examples, not vague descriptions
- Say "struggles to make friends, sits alone at lunch" not "socially awkward"
- Explain impact: "They're refusing school 3 days per week"
- Don't minimize: "I know it might seem small but..."
- Ask questions: "What are the next steps?" "How long is the wait?"
🚫 If GP Dismisses Your Concerns
Common unhelpful responses:
- "All kids go through this"
- "They'll grow out of it"
- "Try parenting classes"
- "They're fine at school" (when school says they're NOT fine)
- "Let's wait and see"
How to respond:
- Stay calm but firm: "I understand, but this has been going on for [time] and is getting worse. I need a referral."
- Ask for it in writing: "Can you note in my child's records that I requested a referral and it was declined?"
- Request a second opinion: See a different GP in the practice
- Self-refer if possible: Some services (CAMHS, SALT) accept parent referrals
- Complain: Practice manager if GP repeatedly refuses appropriate referrals
✅ After the Appointment
- Get confirmation: "So you're referring us to [service], correct?"
- Ask for timeline: "How long until we hear from them?"
- Get it in writing: Request summary letter or check online records
- Note reference number if given
- Chase after 4 weeks if you hear nothing
Navigating CAMHS
Child and Adolescent Mental Health Services - the most gatekept service in the NHS.
🚪 Getting Past the Gate
CAMHS has high thresholds. They often refuse referrals for:
- "Not severe enough"
- "Needs school support first"
- "Parenting issue not mental health"
- "Wrong service" (if it's neurodevelopmental not mental health)
But they SHOULD accept:
- Self-harm or suicidal thoughts
- Severe anxiety affecting daily functioning
- Depression
- OCD, eating disorders, psychosis
- Trauma/PTSD
- Mental health crisis
📞 If Referral is Rejected
- Ask why in writing - what threshold wasn't met?
- Provide more evidence - school reports, incidents, severity
- Re-refer with stronger case
- Escalate to GP: Ask them to challenge rejection
- Contact PALS (Patient Advice & Liaison Service) at your hospital
- MP involvement: Last resort but can work
⏰ The Waiting List
Typical wait times:
- Triage/initial assessment: 3-6 months
- Full assessment: 6-12 months
- Treatment start: 12-18 months from referral
- Crisis team: Should be seen within 24-72 hours
While waiting:
- Chase regularly (monthly) - squeaky wheel gets seen
- Keep a diary of incidents to show deterioration
- Access school counseling if available
- Use crisis services if needed (don't suffer in silence)
- Consider private therapy if affordable
- Free resources: Kooth (online counseling for young people), MindEd, YoungMinds
💊 Medication
Who can prescribe:
- GP: Some antidepressants/anxiety meds (with CAMHS guidance)
- CAMHS psychiatrist: Specialist mental health medications
- Paediatrician: ADHD medication, melatonin
Common medications:
- Anxiety/Depression: SSRIs (fluoxetine/sertraline) - usually CAMHS prescribes
- ADHD: Stimulants (methylphenidate, lisdexamfetamine) or non-stimulants (atomoxetine) - paediatrician or CAMHS
- Sleep: Melatonin - GP or paediatrician can prescribe
- Autism: No medication for autism itself, but may help co-occurring conditions
Autism & ADHD Assessment Pathways
🧩 Autism Assessment
Step 1: GP Referral
Request referral to local neurodevelopmental/autism diagnostic service. GP may ask you to complete M-CHAT (young children) or AQ-10 screening questionnaire.
Step 2: Wait
England average: 18-36 months. Some areas 3+ years.
While waiting: Request school support, pursue private assessment if affordable (£500-£2000), access autism charities for strategies.
Step 3: Initial Screening
Questionnaires for parents, school. Developmental history. May be by phone/video.
Step 4: Full Assessment
Multi-disciplinary: Paediatrician/Psychiatrist, Psychologist, SALT. Observations, interviews, assessments (ADOS-2, ADI-R). Can take 2-4 appointments.
Step 5: Diagnosis (or not)
Written report confirming autism or explaining why not. Post-diagnostic support (should happen, often doesn't).
⚠️ Girls & Women Often Missed:
Autism presents differently in girls—better masking, social imitation, internalized distress. If professionals say "doesn't look autistic," push back. Female autism specialists exist if NHS pathway fails.
⚡ ADHD Assessment
Step 1: GP Referral
Request referral to ADHD service (may be CAMHS, paediatrics, or dedicated ADHD clinic). GP may ask for Conners/SDQ questionnaires.
Step 2: Wait
England average: 12-18 months.
Step 3: Questionnaires & History
Parent, school, and self-report questionnaires (if child old enough). Detailed developmental and family history.
Step 4: Clinical Assessment
Interview with clinician (usually psychiatrist or specialist paediatrician). Observation if needed. Assessment of ADHD symptoms, impact, co-occurring conditions.
Step 5: Diagnosis & Treatment Plan
If diagnosed: Medication trial usually offered, psychoeducation, school support advice. Regular medication reviews (every 6 months initially).
✓ Speeding Up the Process:
- Complete school questionnaires promptly (major delay factor)
- Provide detailed developmental history in advance
- Keep diary of ADHD/autism traits with specific examples
- Chase if appointments missed or delayed
- Consider Right to Choose (see next page)
Right to Choose & Private Options
🎯 NHS Right to Choose (England Only)
What it is: Legal right to choose which provider delivers your NHS-funded care, including private providers with NHS contracts.
For ADHD: Several private providers (Psychiatry UK, Clinical Partners, etc.) offer NHS-funded ADHD assessments via Right to Choose, often with shorter waits (3-6 months vs 12-18 months).
For Autism: Fewer providers, less common, but some areas have options.
How to use it:
- Check which providers operate in your area with NHS contracts
- Tell your GP you want to exercise Right to Choose
- Name the provider you want (e.g., "Psychiatry UK")
- GP MUST refer (legally required) unless clinical reason not to
- Provider contacts you directly
⚠️ GP May Say:
"We don't do that" - They have to. It's law. Politely insist or cite NHS Right to Choose policy.
"I've never heard of it" - Print guidance from NHS website and provider's website.
"It's not available here" - If provider has NHS contract in your area, it is.
If GP refuses: Complain to practice manager, contact ICB (Integrated Care Board), use PALS.
💰 Private Assessment
Why consider private:
- Can't wait 2-3 years for NHS
- Diagnosis needed urgently for school support/EHCP
- NHS rejected referral unfairly
- You can afford it
Costs:
- Autism assessment: £800-£2,500
- ADHD assessment: £500-£1,500
- Educational Psychology: £600-£1,200
- OT assessment: £300-£800
Finding a provider:
- Check they're registered (GMC for doctors, HCPC for psychologists)
- Read reviews, ask in parent groups
- Ensure assessment meets NICE guidelines (so NHS/school accepts it)
- Ask about shared care (if medication needed, will NHS GP prescribe?)
🚨 Private Diagnosis Caveats:
- NHS must accept valid private diagnosis, but some services refuse (especially for medication)
- GPs vary on shared care for ADHD meds - ask before paying for private assessment
- Schools should accept but may ask for NHS "second opinion"
- EHCP process: Private reports are valid evidence
Social Services & Disability Support
👨👩👧👦 When to Contact Social Services
Many parents fear social services. But they're not just about child protection—they also provide disability support.
Contact Children's Disability Team for:
- Respite care (short breaks)
- Family support services
- Direct payments (funding to arrange own care)
- Equipment or adaptations
- Support for disabled child
What to expect:
- Assessment: Social worker visits, assesses needs
- Child in Need Plan: If they meet threshold, formal support plan
- Services offered: Varies hugely by area and budget
⚠️ Reality Check:
Social care is massively underfunded. High thresholds. Long waits. Don't expect miracles, but DO access what little is available if you need it.
🏠 Other Support Services
| Service |
What They Offer |
| Early Help |
Family support before crisis. Parenting support, referrals, advice. |
| SENDIASS |
Free impartial SEND advice. Every LA has one. Use them! |
| Parent Carer Forums |
Local groups of parents with disabled children. Peer support, training. |
| Short Breaks |
Respite: clubs, activities, overnight stays for disabled children. |
| Carers Services |
Support for YOU as carer. Respite, counseling, practical help. |
| Charity Support |
NAS, ADHD Foundation, Contact, Family Fund - grants, advice, groups. |
📞 When in Crisis
If your child (or you) is in mental health crisis:
- CAMHS Crisis Team: Contact via main CAMHS number (out of hours usually NHS 111)
- A&E: If immediate risk of harm
- 999: If emergency (suicide attempt, violence, psychosis)
- Samaritans: 116 123 (24/7, free, confidential)
- Childline: 0800 1111 (for child to call)
- Crisis text line: Text SHOUT to 85258
- Papyrus (under 35s suicide prevention): 0800 068 4141
Don't wait for appointments if it's urgent. Use crisis services.
Advocacy Tips
✊ How to Be an Effective Advocate
- Document everything: Dates, who you spoke to, what was said
- Put it in writing: Follow up phone calls with emails
- Be persistent: Chase, chase, chase. Squeaky wheel gets help.
- Know your rights: NICE guidelines, SEND Code, NHS Constitution
- Use formal complaints: If services fail, complain properly
- Get support: Bring someone to appointments, join parent groups
- Use MPs: Last resort but can unblock things
📧 Template Letter for GP Referral
Dear Dr [Name],
I am writing to request an urgent referral for my [son/daughter], [Child's Name], DOB [date], to [service name].
[He/She] has been experiencing [specific symptoms/behaviors] for [duration]. This is significantly impacting [his/her] [education/wellbeing/daily functioning].
Specific examples include:
- [Example 1 with date]
- [Example 2 with date]
- [Example 3 with date]
We have tried [strategies/interventions] but [he/she] continues to struggle.
I am requesting a referral to [service] for assessment and support. Please confirm this referral in writing.
Thank you,
[Your name]
[Date]
Helpful Resources
🇬🇧 Essential Contacts:
- PALS (Patient Advice & Liaison): Every NHS trust has one - find via hospital website
- Healthwatch: Local independent health & care champions
- IPSEA: www.ipsea.org.uk - SEND legal advice
- SENDIASS: Find local service via www.councilfordisabledchildren.org.uk
- Contact: contact.org.uk | 0808 808 3555 - Disabled children helpline
- Mind: www.mind.org.uk - Mental health info & support
- YoungMinds Parents Helpline: 0808 802 5544
Final Thoughts
Navigating services is exhausting. You shouldn't have to fight for basic support. But until the system improves, parents have to be warriors.
Every rejected referral, every "wait and see," every "not our service" is frustrating. But don't give up.
Keep records. Be persistent. Use complaints. Your child needs you to keep pushing. You've got this. 💜