Specialist NHS Services

Supporting Health, Wellbeing & Positive Futures The NHS provides highly specialised services for people with rare, complex or uncommon health conditions. These services are often delivered through specialist hospitals or nationally commissioned centres with expert multidisciplinary teams. This guide explains specialist NHS services, your rights, referral pathways, legal protections, accessible support, evidence standards, and practical advice for patients, parents and carers. Emergency: If you have life-threatening symptoms such as severe breathing difficulties, collapse, suspected sepsis, stroke symptoms, uncontrolled bleeding or severe allergic reactions, call 999 immediately. For urgent but non-life-threatening concerns, contact NHS 111.

What Are Specialist NHS Services?

Specialist services provide expert assessment, diagnosis and treatment for conditions that require specialist knowledge, equipment or multidisciplinary care.

They may involve:

• Specialist consultants
• Specialist nurses
• Clinical psychologists
• Physiotherapists
• Occupational therapists
• Speech and language therapists
• Dietitians
• Pharmacists
• Genetic counsellors
• Social workers
• Clinical researchers

Many specialist services are commissioned nationally by NHS England.

Official information:

https://www.england.nhs.uk/commissioning/spec-services/

Rare Diseases

A rare disease is a condition that affects a small number of people but may have a significant impact on daily life. Although each condition is uncommon, there are thousands of rare diseases, and together they affect many people.

Examples include:

• Rare genetic disorders
• Rare metabolic diseases
• Rare neurological disorders
• Rare autoimmune conditions
• Rare blood disorders

Support may include:

• Specialist centres
• Genetic testing
• Expert multidisciplinary teams
• Personalised treatment plans
• Clinical trials where appropriate
• Long-term monitoring

Official information:

https://www.england.nhs.uk/publication/the-uk-rare-diseases-framework/

Genetics Services

NHS genetics services help diagnose inherited conditions, explain risks, and support individuals and families.

You may be referred if there is:

• A family history of inherited conditions
• Repeated unexplained illnesses
• Developmental disorders
• Rare diseases
• Certain cancers
• Pregnancy concerns
• Congenital conditions

Genetics services may provide:

• Genetic counselling
• Genetic testing
• Family risk assessment
• Advice about future pregnancies
• Ongoing specialist support

Ask your GP or specialist whether a referral to a regional genetics service is appropriate.

Gender Services

The NHS provides specialist services for people experiencing gender incongruence or gender dysphoria.

For adults, a GP or another healthcare professional can refer directly to an NHS Gender Dysphoria Clinic or Gender Identity Clinic. These clinics assess individual needs and may provide psychological support, endocrine care, speech and language therapy, and referral for other specialist interventions where appropriate.

For children and young people in England, referrals to specialist NHS gender services are made through designated referral pathways, with referrals coming via appropriate secondary care services in line with current NHS England arrangements. Care focuses on holistic assessment, mental and physical health, and personalised care planning involving families where appropriate.

Official links:

• NHS Gender Dysphoria Clinics: https://www.nhs.uk/nhs-services/how-to-find-an-nhs-gender-identity-clinic/
• NHS Gender National Referral Support Service: https://www.genderreferralservice.nhs.uk/

Infectious Diseases

Specialist infectious disease teams diagnose and treat complex infections such as:

• Tuberculosis (TB)
• HIV
• Hepatitis
• Tropical infections
• Serious bacterial infections
• Resistant infections
• Emerging infectious diseases

Support may include:

• Specialist investigations
• Isolation where necessary
• Long-term treatment
• Vaccination advice
• Infection prevention
• Travel health advice

Ask for clear information about treatment, infection control and follow-up.

Tropical Medicine

Tropical medicine services assess illnesses linked to travel or living in tropical and subtropical regions.

They may investigate:

• Malaria
• Dengue
• Typhoid
• Parasitic infections
• Travel-related fevers
• Imported infections

Seek urgent medical advice if you develop fever or become seriously unwell after returning from overseas.

Specialist Centres

Some conditions are treated in designated specialist centres because they require highly specialised expertise.

These centres may provide:

• Complex surgery
• Advanced diagnostics
• Rare disease management
• Cancer treatment
• Organ transplantation
• Specialist rehabilitation
• Children's specialist services
• Highly specialised therapies

Your local hospital or GP can refer you when appropriate.

Children, Parents and Carers

Parents can ask for:

• Specialist paediatric referral
• Multidisciplinary assessment
• Family support
• Genetic counselling where appropriate
• School support
• Education, Health and Care Plan (EHCP) evidence if health affects education
• Copies of clinic letters
• Care coordinator where available
• Transition planning into adult services

Keep copies of:

• Test results
• Genetic reports
• Hospital letters
• Therapy reports
• Care plans
• Medication records
• School reports
• EHCP documentation
• Appointment schedules

Legal Rights

Patients are protected by several important laws and standards, including:

• NHS Constitution for England
• Equality Act 2010
• Human Rights Act 1998
• Mental Capacity Act 2005
• Children Act 1989
• Children and Families Act 2014
• Care Act 2014
• Data Protection Act 2018
• UK GDPR

You have rights to:

• Safe healthcare
• Specialist assessment where clinically appropriate
• Informed consent
• Confidentiality
• Access to records
• Reasonable adjustments
• Involvement in decisions
• Complaints and independent review

Equality & Accessible Support

Under the Equality Act 2010 and the Accessible Information Standard, NHS services should provide reasonable adjustments.

You can ask for:

• Easy Read information
• Large print
• Braille
• Audio information
• British Sign Language (BSL) interpreter
• Spoken language interpreter
• Longer appointments
• Quiet waiting areas
• Communication aids
• Wheelchair access
• Home visits where clinically appropriate
• Carer or advocate involvement
• Sensory adjustments
• Written summaries after appointments

Official information:

https://www.england.nhs.uk/accessible-information-standard/

Evidence Standards

Keeping organised records can help support your care and any future reviews or complaints.

Keep copies of:

• Referral letters
• Clinic letters
• Test results
• Imaging reports
• Genetic reports
• Care plans
• Medication lists
• Symptom diaries
• Appointment letters
• Emails and correspondence
• Consent forms
• Names of professionals involved

Ask for:

• Written diagnosis
• Copies of specialist reports
• Treatment plans
• Follow-up schedule
• Referral confirmation
• Written reasons for decisions
• Copies of investigation results

Accountability & Complaints

If you are unhappy with specialist NHS care:

Step 1

Speak with:

• Consultant
• Specialist nurse
• Care coordinator
• Service manager

Step 2

Contact the hospital Patient Advice and Liaison Service (PALS).

Step 3

Use the NHS complaints procedure.

Step 4

If unresolved, you may ask the Parliamentary and Health Service Ombudsman to review the complaint after the NHS complaints process has finished.

If your concern relates to the overall quality or safety of a regulated service, you can also share information with the Care Quality Commission (CQC), although it does not investigate individual complaints.

Practical Questions to Ask

• Why am I being referred to a specialist service?
• What tests will I need?
• What are the possible diagnoses?
• Are there alternative treatment options?
• What support is available while I wait?
• Will my family need genetic counselling?
• Can I receive information in an accessible format?
• Who is my main point of contact?
• When will my care be reviewed?

Official NHS & GOV.UK Resources

NHS Specialised Services

https://www.england.nhs.uk/commissioning/spec-services/

UK Rare Diseases Framework

https://www.england.nhs.uk/publication/the-uk-rare-diseases-framework/

NHS Gender Dysphoria Clinics

https://www.nhs.uk/nhs-services/how-to-find-an-nhs-gender-identity-clinic/

NHS Gender National Referral Support Service

https://www.genderreferralservice.nhs.uk/

NHS Accessible Information Standard

https://www.england.nhs.uk/accessible-information-standard/

NHS Constitution

https://www.gov.uk/government/publications/the-nhs-constitution-for-england

NHS Complaints

https://www.nhs.uk/contact-us/how-to-complain-to-the-nhs/

Care Quality Commission

https://www.cqc.org.uk

Parliamentary and Health Service Ombudsman

https://www.ombudsman.org.uk

Quick Checklist

✔ Ask your GP or hospital specialist whether referral to a specialist centre is appropriate.
✔ Keep copies of referrals, clinic letters, test results and treatment plans.
✔ Ask for genetic counselling if an inherited condition is suspected.
✔ Request reasonable adjustments or accessible information if needed.
✔ Involve children and young people in decisions appropriate to their age and understanding.
✔ Keep a record of symptoms, appointments and communications.
✔ Raise concerns early through the service, PALS, the NHS complaints process or the Parliamentary and Health Service Ombudsman if necessary.