All public health services are accountable in the UK. This post provides an in-depth exploration of patient rights and accountability within the National Health Service (NHS) in the UK, focusing mainly on services in England. It delves into the sources of legally protected rights for patients, the mechanisms for holding the NHS accountable, and the challenges in upholding standards. The article highlights the importance of patient involvement in healthcare and outlines various ways patients can become more involved. The role of Members of Parliament (MPs) in healthcare issues is discussed. Given weight is the importance of the Equality Act 2010, and disability law in protecting patients’ rights and ensuring fair treatment within the healthcare system. Failures are explored.[AC_PRO id=913]

Regulatory oversight

All health services in England (including private sector organisations)  are primarily accountable to the following entities:

1. Department of Health and Social Care (DHSC): The DHSC is a department of the UK government responsible for government policy on health and social care matters. It oversees the English National Health Service (NHS). The DHSC sets the strategic direction for the NHS and holds it to account.
2. NHS England and NHS Improvement: These are the operational bodies that oversee and manage the provision of health services in England. They are responsible for commissioning services, setting priorities and direction, and improving health and care.
3. Care Quality Commission (CQC): The CQC is the independent regulator of health and social care services in England. It monitors, inspects, and regulates services to ensure they meet fundamental standards of quality and safety. The CQC has the power to enforce legal action and can issue fines or warnings, or stop services if they fail to meet these standards.
4. National Institute for Health and Care Excellence (NICE): NICE provides national guidance and advice to improve health and social care. While it doesn’t have regulatory powers, its guidelines and recommendations are widely respected and followed.
5. Health and Social Care Select Committee: This is a select committee of the House of Commons in the Parliament of the United Kingdom. It oversees the operations of the DHSC and its associated public bodies.
6. Patients and the public: Health services are ultimately accountable to the patients they serve and the general public. Patients have the right to expect safe, high-quality care and to complain or seek redress if their care falls short.
7. Local Authorities: Local authorities have responsibilities for public health, and they commission certain health services.

All of the above have powers derived from the law. In the devolved nations of Scotland, Wales, and Northern Ireland, health services are overseen by their respective health departments and associated bodies.

Legal oversight

The National Health Service (NHS) in England operates under a complex framework of laws and regulations that hold it accountable for its actions and performance. Here are some of the key statutes:

1. National Health Service Act 2006: This is the primary piece of legislation governing the NHS. It sets out the duties and powers of the Secretary of State for Health and Social Care, NHS England, and Clinical Commissioning Groups (CCGs).
2. Health and Social Care Act 2012: This Act introduced significant changes to the structure of the NHS, including the creation of NHS England and CCGs. It also established the Health and Wellbeing Boards and the Care Quality Commission’s role in regulating health and social care services.
3. Care Act 2014: This Act sets out the duties of local authorities in relation to assessing people’s needs and eligibility for publicly funded care and support.
4. Mental Health Act 1983 (amended 2007): This Act provides the legal framework for the assessment, treatment, and rights of people with a mental health disorder.
5. Health and Social Care (Quality and Engagement) Act 2020: This Act strengthens the role of the Care Quality Commission and introduces a duty of candour for healthcare providers.
6. Data Protection Act 2018: This Act governs the processing of personal data, including health data, and gives individuals rights over their personal data.
7. Human Rights Act 1998: This Act incorporates the rights set out in the European Convention on Human Rights into domestic British law, including the right to life, prohibition of torture, and respect for private and family life.
8. Equality Act 2010: This Act protects people from discrimination in the workplace and in wider society, including in the provision of healthcare services.
9. Health and Safety at Work Act 1974: This Act sets out the duties of employers towards employees and members of the public, and the duties of employees to themselves and to each other.
10. Medicines Act 1968: This Act governs the control of medicines for human use and veterinary use, including manufacture, wholesale dealing, supply, administration, and possession.
11. Children Act 1989 and 2004: These Acts provide the legislative spine on which social work practice with children and families is based and provide the framework within which courts make decisions about children’s welfare.
12. Public Health (Control of Disease) Act 1984: This Act provides powers in relation to the control of disease, including powers to declare a state of emergency in response to a pandemic.

This list is not exhaustive, and there are many other pieces of legislation that relate to specific areas of healthcare or specific groups of patients. Additionally, the NHS is also governed by common law duties arising from the law of tort (a basket of law covering civil wrongs).

Equality and disability law

Equality legislation plays a crucial role in protecting patients’ rights and ensuring fair treatment within the healthcare system. In the UK, the key piece of equality legislation is the Equality Act 2010. This Act has several implications for healthcare, including the NHS:

1. Non-discrimination: The Equality Act makes it unlawful for healthcare providers, including NHS Trusts, to discriminate against patients on the basis of certain protected characteristics. These characteristics are age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation.
2. Reasonable adjustments: The Act requires healthcare providers to make reasonable adjustments to ensure that people with disabilities have equal access to healthcare services. This could include providing information in accessible formats, making physical changes to premises, or offering additional support to access services.
3. Public sector equality duty: The Act introduces a Public Sector Equality Duty, which requires public bodies, including NHS Trusts, to have due regard to the need to eliminate discrimination, advance equality of opportunity, and foster good relations between different people when carrying out their activities.
4. Equality impact assessments: To demonstrate compliance with the Public Sector Equality Duty, NHS Trusts often carry out Equality Impact Assessments when making significant changes to services or policies. These assessments help to ensure that the changes do not disproportionately disadvantage any particular group.
5. Complaints and Legal Action: If a patient believes they have been discriminated against by a healthcare provider in breach of the Equality Act, they can make a complaint or take legal action.

In summary, equality legislation plays a vital role in ensuring that healthcare services are accessible and fair, and that all patients, regardless of their personal characteristics, are treated with dignity and respect. It provides a legal framework for challenging discriminatory practices and promoting equality within the healthcare system.

Rights of patients

NHS Constitution

While not a piece of legislation itself, the NHS Constitution sets out the principles and values of the NHS in England. It provides a comprehensive list of rights and pledges that patients are entitled to, such as the right to receive high-quality care and services, to be treated with dignity and respect, to privacy and confidentiality, and to be informed about their care and treatment.

In terms of accountability, the NHS Constitution plays a significant role. It provides a clear framework of what patients and their relatives can expect from the NHS, and what is expected from them in return. Here are some key points related to accountability:

1. Rights and pledges: The NHS Constitution outlines a comprehensive list of rights and pledges that patients are entitled to. These include the right to receive high-quality care and services, to be treated with dignity and respect, to privacy and confidentiality, and to be informed about their care and treatment.
2. Complaints and redress: The NHS Constitution gives patients the right to make a complaint, to have that complaint investigated, and to receive a full and prompt reply. If a patient or their relative believes that these rights have not been upheld, they can use the complaints system to hold the NHS accountable.
3. Involvement in healthcare: The NHS Constitution encourages patients to be involved in decisions about their care. This includes the right to be given the information they need to make choices about their treatment. By being active participants in their care, patients and their relatives can help ensure that the NHS is held accountable for the care it provides.
4. Responsibilities: The NHS Constitution also outlines responsibilities for patients and the public, which include treating NHS staff and other patients with respect, providing accurate information, and following prescribed treatment plans. By fulfilling these responsibilities, patients and their relatives contribute to the effective functioning of the NHS and help ensure that resources are used responsibly.

In summary, the NHS Constitution empowers patients and their relatives to assert accountability by clearly defining their rights, enabling them to raise concerns or complaints, and encouraging their active involvement in healthcare decisions.

Codes of practice

Several Codes of Practice are relevant to patients within the healthcare system in England, even if they apply indirectly. These codes provide guidance and set standards for healthcare professionals, and while they may not grant rights directly to patients, they play a crucial role in ensuring patients receive safe, effective, and ethical care. Here are some key examples:

1. General Medical Council (GMC) – Good Medical Practice: This  is a framework code that sets out the principles and values that guide good medical practice. It covers areas such as knowledge and skills, safety and quality, communication, partnership and teamwork, and maintaining trust. It connects to 30-odd other guidance documents for registered doctors.
2. Nursing and Midwifery Council (NMC) – The Code: This code presents the professional standards that nurses, midwives, and nursing associates must uphold in order to be registered to practise in the UK.
3. Health and Care Professions Council (HCPC) – Standards of Conduct, Performance and Ethics: This code applies to all professionals registered with the HCPC. It sets out expectations regarding conduct, performance, and ethics.
4. Mental Health Act 1983 – Code of Practice: This code provides guidance to professionals on how they should carry out their roles and responsibilities under the Mental Health Act to ensure that patients receive effective, safe, and respectful care.
5. Data Protection Act 2018 – Data Protection Code of Practice for the Health Sector: This code provides best practice advice for those working within the health sector on how to comply with the Act, including how to handle patients’ personal data.
6. Caldicott Principles: These principles provide a framework for the management of patient-identifiable information in the healthcare setting. They were developed in response to a review by Dame Fiona Caldicott and are widely used in the NHS.
7. General Pharmaceutical Council (GPhC) – Standards for Pharmacy Professionals: This code sets out the standards that pharmacy professionals should meet, including how to provide person-centred care and maintain effective communication with patients.

These codes of practice, among others, play a vital role in ensuring that healthcare professionals deliver care that respects patients’ rights and meets their needs.

How are rights protected?

Protecting patients’ rights in healthcare is indeed a complex task that requires a multi-faceted approach. Here are some of the key methods used:

1. Legislation and regulation: Laws provide the foundation for protecting patients’ rights. Regulatory bodies, such as the Care Quality Commission (CQC) in England, enforce these laws and have the power to take action if healthcare providers fail to meet legal standards.
2. Professional standards and codes of practice: Healthcare professionals are guided by standards and codes of practice set out by their professional bodies, such as the General Medical Council (GMC) for doctors and the Nursing and Midwifery Council (NMC) for nurses and midwives. These standards and codes outline the ethical and professional conduct expected of healthcare professionals.
3. Training and education: Healthcare professionals receive training and education on patients’ rights and how to uphold them. This includes training on informed consent, confidentiality, and respect for autonomy and dignity.
4. Patient advocacy: Patient advocates can play a crucial role in protecting patients’ rights. They can support and guide patients, helping them to understand their rights and make informed decisions about their care.
5. Complaints procedures: Every NHS organisation has a complaints procedure. If a patient feels their rights have not been respected, they can make a complaint. This can lead to an investigation and, if necessary, corrective action.
6. Public and patient involvement: Patients and the public are increasingly involved in healthcare decision-making, from individual care planning to the design of health services. This can help to ensure that services respect and protect patients’ rights.
7. Audits and inspections: Regular audits and inspections are carried out to check that healthcare providers are meeting standards and following laws and guidance that protect patients’ rights.
8. Information and communication: Providing patients with clear, accessible information about their rights can empower them to assert these rights and make informed decisions about their care.

These methods work together to create a robust system for protecting patients’ rights. However, it is important to note that the effectiveness of these methods can depend on factors such as resources, organisational culture, and the involvement and empowerment of patients themselves.

Avenues for patient action

Protecting patients’ rights in healthcare is indeed a complex task that requires a multi-faceted approach. Patients can apply the knowledge of how the rights are protected (listed above)- independently, or with assistance from charitable organisations.

Members of Parliament (MPs) : Patients can engage MPs in issues related to their healthcare. MPs can play a role in holding the NHS to account on behalf of their constituents.

There are several reasons why patients may be hesitant to ask for information about their healthcare status, including their position on a waiting list:

1. Fear of negative consequences: Some patients may fear that asking questions or seeking more information could lead to negative repercussions, such as perceived annoyance from healthcare providers or a potential impact on the quality of their care.
2. Communication barriers: Patients may find it difficult to communicate their concerns or questions due to language barriers, health literacy issues, or cognitive impairments. They may also feel overwhelmed by medical jargon and not know how to ask for clarification.
3. Perceived power imbalance: The traditional doctor-patient relationship often places the doctor in a position of authority. This perceived power imbalance can make patients feel uncomfortable or intimidated when it comes to asking questions or seeking more information.
4. Emotional factors: Fear, anxiety, or distress about their health condition can also prevent patients from asking questions. They may be afraid of what the answers might reveal.
5. Lack of awareness: Some patients may not know that they have the right to access certain information, including their status on a waiting list.
6. Assumption of trust: Patients often place a high level of trust in their healthcare providers and may assume that if something was important, their doctor would tell them.

Addressing these barriers requires efforts from healthcare providers to foster an open, patient-centred approach that encourages and facilitates communication. This includes reassuring patients that their questions are welcome, using clear and understandable language, and proactively providing information about their healthcare status and rights.

The Parliamentary and Health Service Ombudsman (PHSO) in the UK can become involved in a patient’s case if there’s a complaint about the NHS that hasn’t been resolved satisfactorily at the local level. Here are the steps to engage the Health Ombudsman:

1. Local resolution: Before the Ombudsman can get involved, the complaint must first be raised directly with the NHS service provider (such as a hospital, GP practice, or pharmacy). This gives the provider an opportunity to respond and, if possible, resolve the issue.
2. Escalation to the NHS Complaints Advocacy service: If the issue isn’t resolved satisfactorily at the local level, the next step is to escalate the complaint to the NHS Complaints Advocacy service. This service can provide support and advice on how to make a complaint.
3. Referral to the Ombudsman: If the complaint still isn’t resolved satisfactorily after going through the local complaints procedure and the NHS Complaints Advocacy service, it can then be referred to the PHSO. This usually needs to be done within a year of the event that caused the complaint or within a year of becoming aware of the problem.
4. Investigation by the Ombudsman: The PHSO will assess the complaint and decide whether to investigate. If they do investigate, they will look at all the evidence and make a decision based on what they find. They can make recommendations for the NHS to put things right if they find that something has gone wrong.

It is important to note that the PHSO is an independent body and their services are free. They provide a final stage for complaints about the NHS in England and public services delivered by the UK government. They use the power of investigation to make fair and impartial decisions on complaints.

Failures

Despite the numerous mechanisms in place to ensure accountability and uphold standards within the NHS, failures do occur. These can be due to a variety of factors, often complex and interrelated. Here are some common themes:

1. Resource constraints: The NHS, like any public health system, operates within finite resources. Budget constraints, staffing shortages, and capacity issues can lead to compromises in care quality and patient safety.
2. Systemic issues: Failures often arise from systemic issues rather than individual mistakes. These can include poor leadership, inadequate supervision, lack of clear policies and procedures, or a culture that does not prioritise safety and quality.
3. Communication failures: Poor communication between healthcare professionals, and between professionals and patients, can lead to errors. This can include failures to share important information about a patient’s condition or treatment, or to listen to and act on patients’ concerns.
4. Lack of learning from mistakes: When errors occur, it is crucial that healthcare organisations learn from them to prevent them from happening again. However, sometimes there is a lack of effective mechanisms for learning from mistakes, or a culture that does not support learning and improvement.
5. Inadequate regulation and oversight: While there are regulatory bodies tasked with overseeing the NHS, sometimes these bodies may fail to identify issues or to take appropriate action when problems are identified.
6. Failure to involve and listen to patients: Patients are often the first to notice problems with their care. However, sometimes their concerns are not taken seriously, or they are not involved in decisions about their care. This can lead to failures to provide appropriate care and to respect patients’ rights.
7. Workforce issues: High levels of stress and burnout among healthcare professionals can lead to mistakes and lower the quality of care. This can be due to excessive workloads, long hours, and challenging working conditions.

These themes highlight the complexity of healthcare and the challenges involved in ensuring that high standards of care are consistently met. Addressing these issues requires a comprehensive, system-wide approach that focuses on improving leadership, culture, communication, learning from mistakes, patient involvement, and working conditions for staff.

Inquiries

There have been hundreds of public inquiries over the last 20-odd years. Start here: https://www.hundredfamilies.org/the-victims/ for a list of 2148 homicide inquires of which 884 reports are available for download. The PHSO has another few hundred ready for download. You could spend your life reading all of them and probably end up with a mental health problem as a result. Please do not. The following are broad themes:

1. Exacerbated mental health conditions: This is the most common patient-related factor and the most frequently recurring theme. The exacerbated mental health condition is often secondary to physical health problems, social and relationship difficulties, an underlying criminal offence, alcohol and substance misuse, or sexual offences.
2. Lack of engagement with services and non-adherence to medications: Some patients do not engage with the services provided or adhere to their medication regimen, which can lead to a worsening of their mental health condition.
3. Issues around risk assessment and management: This is the most common professional-related factor. Poor practice, especially improper documentation, was a major cause. This was noticed more in cases where the patient frequently presented and the health professional did not update the risk assessment and management documentation.
4. Inadequate clinical enquiries: Clinicians sometimes had misperceptions regarding the seriousness of the patient’s presentation. This includes patient history and collateral information from carers and other professionals managing the patient.
5. Non-adherence or poor adherence to policies and procedures: Clinicians mostly did not adhere to the trust’s follow-up review standards. Follow-up is very important as it ensures that a patient receives continued support whether they are in crisis or not.
6. Lack of interprofessional communication and collaboration: A lack of communication and collaboration between professionals can result in the patient not having the necessary support. This is particularly important for patients who have comorbid physical and mental health problems.
7. Inadequate psychiatric accommodation and unsafe wards: Factors within the organisation identified as root causes included inadequate psychiatric accommodation, a lack of additional support for mental health patients (such as drug and alcohol services) and unsafe wards.

These themes highlight the complex and multifaceted nature of mental health care and the various factors that can contribute to failures in service provision leading to tragic outcomes such as suicides. It underscores the importance of comprehensive and continuous care, effective communication and collaboration among professionals, adherence to policies and procedures, and the provision of safe and adequate accommodation for patients.

The Coroner (in the UK)

In the United Kingdom, the role of the Coroner is to investigate deaths that have occurred under certain circumstances, such as those that are sudden, unexpected, violent, or unexplained. The Coroner’s role is crucial in maintaining accountability within the healthcare system, including the National Health Service (NHS), for several reasons:

1. Investigation of deaths: The Coroner investigates to establish the cause of death. If the death occurred while the individual was under the care of a healthcare provider, such as the NHS, the Coroner’s investigation may reveal whether there were any failings in the care provided that contributed to the death.
2. Inquests: The Coroner holds inquests, which are legal inquiries into the circumstances surrounding a person’s death. These inquests can reveal systemic issues or specific failings in healthcare provision. The findings from inquests can lead to recommendations for changes in practice to prevent similar deaths in the future.
3. Prevention of Future Deaths Reports: If during an inquest the Coroner identifies a risk of other deaths occurring in similar circumstances, they have the power to write a report outlining their concerns and send it to the person, organisation, or authority that has the power to take action. This is known as a Prevention of Future Deaths (PFD) report. The recipient of a PFD report must respond in writing, outlining what action they have taken or why they have not taken any action. These reports and responses are published and can therefore drive improvements in healthcare provision.
4. Public accountability: The Coroner’s investigations and inquests are generally held in public, contributing to transparency and public accountability of healthcare providers.
5. Legal accountability: The findings of a Coroner’s inquest can be used in legal proceedings, such as negligence claims against healthcare providers.

In summary, the Coroner plays a significant role in ensuring accountability within the healthcare system by investigating deaths, holding inquests, issuing PFD reports, and contributing to public and legal accountability.

Take away summary

1. Patient rights: Patients in the UK have legally protected rights derived from various sources, including the NHS Constitution, the National Health Service Act 2006, the Health and Social Care Act 2012, the Human Rights Act 1998, the Equality Act 2010, the Data Protection Act 2018, and the Mental Health Act 1983.
2. Holding the NHS accountable: The NHS is held accountable through a combination of legislation, regulation, professional standards, and patient feedback. Regulatory bodies like the Care Quality Commission play a key role in enforcing standards.
3. Patient involvement: Patients can hold the NHS accountable by providing feedback, making complaints, participating in patient groups, sharing experiences with Healthwatch, getting involved in NHS Trust governance, reporting concerns to the CQC, and involving their MPs.
4. Challenges in upholding standards: Despite mechanisms for accountability, failures occur due to factors like resource constraints, systemic issues, communication failures, lack of learning from mistakes, inadequate regulation and oversight, failure to involve and listen to patients, and workforce issues.
5. Increasing patient involvement: Patients can become more involved in their healthcare through providing feedback, participating in patient groups, sharing experiences with Healthwatch, getting involved in NHS Trust governance, being involved in care planning, campaigning and advocacy, and volunteering.
6. Failures: Have led to public inquiries, PHSO inquires and those from the coroner. Several common themes and lessons have emerged that are usually in the area of systemic failures, lapses in health service management and dysfunctional cultures.
7. Role of MPs: Patients can involve their MPs in issues related to their healthcare. MPs can raise issues in Parliament, write to health authorities, refer cases to the Parliamentary and Health Service Ombudsman, advocate for their constituents, and campaign on health issues.
8. The Coroner: plays a significant role in ensuring accountability within the healthcare system by investigating deaths, holding inquests, issuing PFD reports, and contributing to public and legal accountability.