Specialist care
and your rights as a patient
Understand specialist neuroendocrine cancer care and your rights when making decisions about your care
Neuroendocrine cancer is uncommon and can be complex, so having access to healthcare professionals with specialist knowledge and experience can be an important part of your care.
Specialist neuroendocrine cancer services bring together healthcare professionals from different disciplines to review and plan care. Some are formally recognised as Centres of Excellence, but other services also provide specialist neuroendocrine cancer care.
Wherever you receive your care, you have rights as a patient. You should be given clear information, be involved in decisions about your care and have the opportunity to ask questions and discuss your options.
This page explains what specialist neuroendocrine cancer care can look like, how to find a specialist service, and your rights when making decisions about your care.
Specialist neuroendocrine cancer care
Specialist neuroendocrine cancer services have a multidisciplinary team (MDT) of doctors, nurses, and other healthcare professionals with expertise in caring for people with neuroendocrine cancer. The team works together to review your individual situation and plan your care.
Centres of Excellence
Some specialist services are formally recognised as Centres of Excellence by the European Neuroendocrine Tumour Society (ENETS). To receive this accreditation, services must demonstrate that they meet defined standards for neuroendocrine cancer care.
These include requirements relating to:
- Expertise across relevant medical specialties
- Multidisciplinary team working
- Access to appropriate specialist services and resources
- Patient involvement
- Research and scientific activity
- Quality monitoring and data collection
Services must apply for ENETS accreditation — Centre of Excellence status is not automatically awarded.
Specialist services that are not Centres of Excellence
There are also specialist services providing high-quality neuroendocrine cancer care that are not ENETS Centres of Excellence. Some may meet similar standards but have chosen not to apply for accreditation or may be in the process of applying.
Being treated outside a named Centre of Excellence does not mean you are receiving a lower standard of care.
If you are unsure, you can ask your healthcare team whether your care will be reviewed by a specialist MDT or if specialist advice has been sought. You can also ask whether a referral or second opinion would be helpful.
Your rights as a patient in the UK
Patients across the UK have important rights and principles that help ensure they receive safe, respectful care and are involved in decisions about their health. You have a right to:
- Safe, high-quality care
- Be treated with dignity and respect
- Be involved in decisions about your care
- Receive clear information you can understand
- Give or refuse consent to treatment
- Have your privacy protected
- Raise concerns or complain, and be heard
You can also ask for a second opinion if you would like another healthcare professional’s view on your diagnosis or treatment.
Patient rights across the UK
Across the UK, patients have broadly similar core rights, but these are set out in different ways in each nation. The following charters, standards and guidance provide further information about your rights and what you can expect from NHS care:
- England: The NHS Constitution for England sets out patients’ rights, NHS pledges and responsibilities.
- Wales: The Health and Care Quality Standards 2023 set out what people can expect from health services in Wales, including safe, effective and person-centred care.
- Scotland: The Charter of Patient Rights and Responsibilities sets out what you are entitled to when using NHS services in Scotland.
- Northern Ireland: The Quality standards for health and social care set out expectations around respect, communication, privacy, dignity, consent and involvement in decisions about care.
Decisions about treatment
You are an active partner in decisions about your care and will have ongoing conversations with your healthcare team. You can ask for support with these conversations if you need it – for example, a sign language or spoken language interpreter, or an advocate.
When making decisions about treatment, you should be given clear information about the options, including:
- The potential benefits and risks
- Alternative options
- What may happen if you choose not to have treatment
You should have opportunities to ask questions time to decide whether to consider your options before deciding whether to have treatment.
Your healthcare team is there to guide and support you — but the decision is yours.
Informed consent
No treatment will go ahead without your informed consent. For consent to be valid, it must be:
- Voluntary: Your decision is free from pressure or coercion
- Informed: It is based on clear, complete information
- With capacity: You are able to understand the information provided and make the decision
Consent is an ongoing process rather than a one-off event, and you can change your mind.
Refusing treatment
If you have capacity to make decisions, you can refuse treatment, even if your healthcare team believes that refusing it could affect your health.
Capacity relates to your ability to understand and use the relevant information to make a particular decision at a particular time. Adults are generally presumed to have capacity unless there is evidence otherwise.
If you are unable to make a particular decision for yourself, your healthcare team will follow the relevant law and guidance for the part of the UK where you receive care. You should still be supported and involved in decisions about your care as far as possible.
Different legal frameworks apply across the UK. For example, the Mental Capacity Act 2005 applies in England and Wales, while Scotland has separate legislation relating to adults with incapacity. Northern Ireland also has its own legal framework.
If you have any questions, we are here to help.
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