Your rights during assessment, when receiving diagnosis and post-diagnosis
Right to clear and accessible information: You have the right to clear, understandable information about the assessment and diagnostic process, including what it involves, potential outcomes, and available support post-diagnosis.
Right to involvement and respect: You have the right to be fully involved in decisions concerning your care and diagnosis. Services should treat you with dignity, respect your preferences and unique needs, and provide assessment in a sensitive and supportive manner.
Right to a timely assessment: Although waiting times vary, you have a right to expect an assessment to be carried out within reasonable timeframes and to be kept informed of any delays or changes to scheduling.
Right to confidentiality and Data Protection (GDPR): Your personal information collected during assessment and diagnosis is confidential and protected under the UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018. You have the right to:
Be informed how your data is collected, used, stored, and shared
Access your personal data and health records, including diagnostic reports
Request correction or deletion of incorrect or unnecessary data.
Withdraw consent for data processing
Be informed if automated decision-making is used
Organisations providing assessments, including NHS and commissioned and private providers, must comply with GDPR and appoint a Data Protection Officer responsible for data privacy
Right to control disclosure and sharing of your diagnostic information: You have the right to decide who can access your autism diagnosis and related information. Under GDPR (Article 9) and the Human Rights Act 1998 (Article 8), all healthcare providers - whether it's NHS, private or NHS-commissioned services - must obtain your explicit consent before sharing diagnostic information with third parties, including your GP, family members, employers, educational institutions, or other healthcare providers. This right includes:
Choosing whether to disclose your diagnosis to your GP, family, friends, employers, or educational institutions...
Controlling which specific information from your diagnostic report is shared and with whom
Refusing consent for information sharing
Revoking previously given consent at any time
Being informed about any legal exceptions where information may be shared without consent (such as safeguarding concerns or court orders)
Healthcare providers cannot assume consent - they must actively seek your permission for each disclosure and respect your decision if you refuse. Note: While your legal rights are identical across NHS and private services, NHS services may expect GP integration as part of standard care pathways, and refusing GP sharing may affect access to follow-up NHS services. Private services should explicitly request consent before contacting your GP.
Human Rights Act 1998 (Article 8 - right to private and family life)
Right to a qualified and regulated assessment: Diagnosis must be conducted by qualified registered professionals adhering to recognised clinical standards, ensuring accuracy and reliability of the diagnosis. This is covered under the regulation of healthcare professionals by bodies such as:
Health and Care Professions Council (HCPC) for allied health professions
Healthcare Improvement Scotland regulates independent healthcare providers to ensure standards and safety compliant with NHS and statutory legislation
Right to know and verify credentials of the professionals involved in your assessment and diagnosis: If a professional uses a protected title such as 'RN', 'Doctor' or 'Clinical Psychologist', their name and registration number should be verifiable on the relevant register. 'Registered Nurse' ('RN'), 'Medical Practitioner' or 'Doctor', and HCPC-regulated titles (such as 'Occupational Therapist", 'Speech and Language Therapist', 'Practitioner Psychologist') are protected healthcare titles under the UK law, and it is a criminal offence for anyone, with intent to deceive, to falsely represent themselves as being registered or qualified to use these titles when they are not. Remember, a non-clinician is not authorised to make clinical diagnoses in Scotland.
Right to advocacy and support: Access to advocacy is a right, enabling you to receive assistance in understanding the process, communicating with professionals, and making informed decisions.
Right to appeal or make complaints: If you are dissatisfied with the diagnostic process or its outcomes, you have the right to raise concerns and complaints formally through NHS Scotland or private providers’ complaints procedures and expect timely and fair resolution.
Right to post-diagnostic support: You have the right to be offered or referred to appropriate post-diagnostic support services, including social care, mental health support, and community resources tailored to your individual needs.
Right to equal access: Diagnosis and support must be accessible to all, regardless of age, ethnicity, disability, gender, or location.
Right to know if you are a participant in a non-standard, pilot, or experimental diagnostic service: If you are referred for an autism assessment through an NHS Board in Scotland you have the right to know whether the process you are entering is a non-standard, novel, pilot, or experimental diagnostic service that differs from the established standards outlined in SIGN 145 - Assessment, diagnosis and interventions for autism spectrum disorders. A diagnostic pathway constitutes research or an experimental pilot when it:
differs from standard NHS clinical practice,
introduces a new or modified diagnostic process (e.g. replaces standard clinician-led MDT review with non-clinician assessments).
If such a service is commissioned or delivered under an NHS referral, it must:
have Research Ethics Committee (REC) approval,
be sponsored by an NHS Board’s Research & Development (R&D) department, and
obtain your written informed consent before assessment.
Before your assessment, you should receive:
a Patient Information Leaflet (PIL) explaining who is responsible and which NHS Board oversees the service,
a consent form identifying the Data Controller (the NHS Board or provider) and explaining how your information will be used, stored, and shared,
contact details of the Data Protection Officer (DPO).
The Patient Information Leaflet should:
clearly state it is a pilot or a research project,
explain why and how it differs from NHS-standard care, what will happen, and who is accountable,
describe data use and protection under data protection law,
offer you a choice to participate or remain on the standard NHS pathway, with no disadvantage.
reference relevant legal frameworks:
Health and Social Care Standards (2018) – national standards for safe, effective, person-centred care across health and social services
NHS (Scotland) Act 1978 – defines the duties of NHS Boards, including responsibility for clinical governance and the safety of commissioned services
Patient Rights (Scotland) Act 2011 – establishes your right to be informed, involved and treated with dignity and respect in all aspects of NHS care
Duty of Candour (Health (Tobacco, Nicotine etc. and Care) (Scotland) Act 2016) – requires organisations to be open, honest, and to apologise when things go wrong
Human Rights Act 1998 (Article 8) – protects your right to privacy and to control the use and sharing of your personal information
Data Protection Act 2018 and UK GDPR – govern lawful collection, storage, and use of personal health data, including the need for explicit consent for special category data
Governance Arrangements for Research Ethics Committees (GAfREC) – sets out when NHS research or experimental activities require REC approval
UK Policy Framework for Health and Social Care Research (2017) – defines sponsor, ethics, and consent requirements for any activity involving human participants or their data