Disability & Long-Term Conditions

This guide is for England. It supports disabled people, people with long-term conditions, children, parents, carers and advocates.

Understanding disability and long-term conditions

Disability can include physical disability, sensory loss, learning disability, autism, ADHD, mental health conditions, chronic illness, chronic pain and neurological conditions. A long-term condition is a health problem that needs ongoing care, treatment or monitoring.

NHS support may include:

• GP care
• medication reviews
• hospital specialists
• community nursing
• physiotherapy
• occupational therapy
• speech and language therapy
• pain services
• wheelchair services
• mental health support
• social prescribing
• social care assessment
• reasonable adjustments

Physical disabilities

Support may include mobility assessments, physiotherapy, occupational therapy, equipment, wheelchair services, home adaptations, blue badge support, pain management, continence support and care planning.

Ask your GP, hospital team or local council for:

• occupational therapy assessment
• social care needs assessment
• disabled facilities grant advice
• wheelchair or mobility referral
• care and support plan

Learning disabilities

People with a learning disability may need extra support to understand information, communicate symptoms and access appointments. NHS annual health checks are available for people aged 14 or over who are on their GP learning disability register. The NHS says disabled people should receive reasonable adjustments so they can use health services as easily as non-disabled people.

Ask for:

• annual health check
• health action plan
• Easy Read letters
• longer appointments
• hospital passport
• carer involvement
• learning disability liaison nurse
• reasonable adjustment flag

Autism

Autistic people may need adjustments for communication, sensory needs, anxiety, waiting rooms, appointment length, unexpected changes, pain communication and decision-making support.

Helpful adjustments include:

• quiet waiting area
• first or last appointment
• written questions before appointment
• clear step-by-step explanations
• no unnecessary touching
• extra processing time
• supporter/carer present
• sensory-friendly environment

ADHD

ADHD can affect attention, organisation, impulsivity, emotional regulation, sleep, school, work and relationships. Support may include GP advice, ADHD assessment referral, medication review, mental health support, school adjustments, occupational health support and coaching strategies.

Ask for:

• written instructions
• reminder texts
• appointment summaries
• medication monitoring
• reasonable adjustments at school, college or work
• support while waiting for assessment

Chronic illness and chronic pain

Chronic illness and pain can affect mobility, sleep, mood, school, work, family life and independence. Pain should be taken seriously even when scans or blood tests do not fully explain symptoms.

Support may include:

• GP review
• specialist referral
• medication review
• physiotherapy
• occupational therapy
• pain clinic
• pacing advice
• mental health support
• benefits or work advice
• school support plan

ME/CFS

ME/CFS is a long-term condition that can affect different parts of the body; NHS guidance says the most common symptom is extreme tiredness and that it can affect adults and children.

Common support needs:

• pacing and energy management
• school or work adjustments
• reduced activity demands
• symptom monitoring
• support for sleep, pain, dizziness and brain fog
• specialist referral where available

Fibromyalgia

Fibromyalgia can cause widespread pain, fatigue, sleep problems, brain fog, headaches, IBS symptoms and sensitivity to touch, light or noise.

Ask about:

• pain management
• physiotherapy
• sleep support
• medication review
• mental health support
• reasonable adjustments
• work or school adjustments

Multiple sclerosis, Parkinson’s and Motor Neurone Disease

These are neurological conditions that may need coordinated specialist care. NHS England’s RightCare toolkit covers progressive neurological conditions including MS, Parkinson’s and MND.

Support may include:

• neurologist
• specialist nurse
• physiotherapy
• occupational therapy
• speech and language therapy
• dietitian
• respiratory support
• mobility support
• medication review
• care planning
• advance care planning
• carer support

Legal rights

Disabled people have important legal protections.

Under the Equality Act 2010, services must make reasonable adjustments where disabled people would otherwise be put at a substantial disadvantage. The Act includes a specific duty to make reasonable adjustments.

The NHS also states that reasonable adjustments are a legal requirement to make health services accessible to disabled people.

The NHS Constitution gives patients rights to dignity, respect, access to NHS services, involvement in decisions, informed consent, confidentiality, access to records and complaints.

Accessible healthcare

The NHS Accessible Information Standard requires NHS and publicly funded adult social care services to make sure disabled people and people with impairments or sensory loss can access and understand information and receive communication support.

You can ask for:

• Easy Read
• large print
• Braille
• audio
• BSL interpreter
• language interpreter
• text/email instead of phone
• longer appointment
• quiet waiting area
• wheelchair access
• home visit if clinically needed
• carer or advocate involvement
• reasonable adjustment flag on your NHS record

The NHS Reasonable Adjustment Flag allows health and care professionals to record and share reasonable adjustments across NHS services.

Children and parents

Parents and carers can ask for:

• GP review
• paediatric referral
• CAMHS support if mental health is affected
• school nurse support
• Education, Health and Care Plan assessment if needs affect education
• reasonable adjustments at school
• hospital passport
• written care plan
• medication plan
• emergency plan
• safeguarding support if a child is at risk

For children with learning disability, autism, ADHD, chronic illness or pain, keep school evidence such as attendance, behaviour changes, fatigue, sensory distress, exclusions, reduced timetable, missed learning and support plans.

Evidence standards

Keep clear records of:

• symptoms and flare-ups
• pain, fatigue, seizures, falls or mobility changes
• appointments and waiting times
• medication and side effects
• referrals and letters
• test results
• hospital discharge summaries
• school reports and attendance
• work impact
• photographs where relevant
• names of professionals spoken to
• copies of emails and complaints

Ask professionals for:

• diagnosis or working diagnosis
• care plan
• risk plan
• review date
• referral confirmation
• reasonable adjustments in writing
• explanation of test results
• written safety-netting advice

Accountability and complaints

If care is delayed, inaccessible or unsafe:

1. Speak to the GP, consultant, nurse, practice manager or service manager.
2. Contact PALS for hospital concerns.
3. Make a formal NHS complaint.
4. Escalate unresolved complaints to the Parliamentary and Health Service Ombudsman.
5. For discrimination concerns, consider advice from Citizens Advice, Equality Advisory Support Service, Disability Rights UK or a legal adviser.

Official NHS and GOV.UK links

• NHS Conditions A–Z: https://www.nhs.uk/conditions/
• NHS reasonable adjustments: https://www.england.nhs.uk/learning-disabilities/improving-health/reasonable-adjustments/
• Accessible Information Standard: https://www.england.nhs.uk/accessible-information-standard/
• Reasonable Adjustment Flag: https://digital.nhs.uk/services/patient-flags-service/reasonable-adjustment-flag
• Learning disability annual health checks: https://www.nhs.uk/conditions/learning-disabilities/annual-health-checks/
• ME/CFS: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
• Equality Act reasonable adjustments: https://www.gov.uk/government/publications/reasonable-adjustments-a-legal-duty/reasonable-adjustments-a-legal-duty
• Equality Act 2010: https://www.legislation.gov.uk/ukpga/2010/15/section/20
• NHS complaints: https://www.nhs.uk/contact-us/how-to-complain-to-the-nhs/

Best rule: ask for adjustments in writing, keep evidence, request care plans, involve carers or advocates where needed, and escalate if access or safety is affected.