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The Legal Rights of People with Dementia in Health and Social Care
Jim Pearson Alzheimer Scotland Welfare Rights Manager
Why are rights in health and social care important?
Progress is being made People with dementia still experience Stigma Discrimination Indignity Neglect Harm People with dementia still face stigma and discrimination in society. Awareness raising campaigns to increase public understanding are beginning to change attitudes to dementia. However, changing attitudes and practices which deny people with dementia their rights is also a major challenge to how health and social care is provided. In addition to distressing accounts from carers and people with dementia, there is a growing body of evidence to support the view that the rights of people with dementia are being overlooked, neglected or in a few individual cases, deliberately abused. Capacity and Ability Dementia is an illness that over time affects the capacity of individuals to make some or all decisions about their everyday lives, including their money, health and welfare. It gradually affects their ability to communicate, reason and act in their own interests. This severely compromises their ability to stand up for their own rights and leaves them vulnerable to abuse. It is for this reason that the Adults with Incapacity (Scotland) Act 2000 with an important set of rules to be followed by anyone who acts or makes decisions on behalf of someone else. (See Background). Early Diagnosis People with dementia need an early diagnosis, and to be fully informed of their rights so that they can make choices about the types of care and support they want to have now and in the future. It allows them time to put in place legal arrangements for future decision making, including advanced statements and power of attorney. Fully Informed Organisations It is equally important to ensure that organisations providing health, social care and other services are fully informed about the rights of people with dementia and their carers. In this way organisations can address the fundamental changes in culture required to ensure that people with dementia and their carers receive services of the highest quality and can enjoy the highest quality of life possible within the limits of the illness. A major issue is a lack of equity of access to high quality dementia care services for people with dementia
Sources of Legal Rights in Scotland
UK Legislation Human Rights Act 1998 National Health Service and Community Care Act 1990 Disability Discrimination Act 1995 Scottish Legislation Community Care and Health (Scotland) Act 2002 The Regulation of Care (Scotland) Act 2002 The Adults with Incapacity (Scotland) Act 2000 The Mental Health (Care and Treatment) Scotland Act 2003 Adult Support and Protection (Scotland) Act 2007
The core values of Human Rights
The Human Rights Act 1998 adopts the rights in the European Convention of Human Rights and is based on a set of core values, these are: Fairness Respect Equality Dignity Autonomy The Human Rights Act requires all legislation made by Scottish & UK Parliaments to be compatible with the Act Appendix 2: Examples of human rights in health and social care Human Right What it means Examples of relevant issues The right not to be treated in an inhuman or degrading wayInhuman treatment means treatment causing severe mental or physical sufferingDegrading Treatment means treatment that is grossly humiliating or undignifiedPhysical or psychological or other types of harmSoiled or unchanged clothing or beddingLeaving food for service users or patients when they are unable to feed themselvesPersonal care carried out in view of other people The right to respect for private and family life, home and correspondenceFamily life is wider than blood or formal relationshipsPrivate life covers things like privacy, personal choices, relationships and participation in community lifeHome means respect for the home someone has. Not a right to housing.Correspondence means all communication for example like phone calls, letters, Independent livingPrivacy at home, in a hospital or care homePersonal information including financial or medical recordsFamily visits, separation of families and other relationships due to hospital or care home admissionsClosure of residential care homes or hospitalStaff in care homes, supported accommodation or hospital etc controlling mail, phone calls etc without authority The right to freedom or libertyThis is not a right of individuals to do what ever they want, but a right not to be deprived of liberty in an arbitrary wayInformal detention in hospital of people who lack capacity to consent to admissionDelays in discharging people detained under mental health legislation Excessive, arbitrary and inappropriate use of restraint in health and social care settings The right to a fair trialThis does not just apply to criminal proceedings but to a broad range of areas where an individuals civil rights or responsibilities are decided upon. It includes an individual’s right to: a chance to present a case before decision is madereasons for the decisionan independent and impartial tribunal or hearingThe complaints procedures of public bodiesCompensation claimsAppeal procedures in social security, mental health care and treatment tribunals The right not to be discriminated againstDiscrimination can be direct or indirect. This right does not apply on its own. An individual can only use the human rights act to argue discrimination if another human right is breached.However, the right not to be discriminated may have been breached under other legislation such as the Disability Discrimination Act 1995Access to medical treatment or community care services, based on age, disability, gender or ethnic origin etcInformation or options presented in inaccessible waysFailing to offer food to take account of cultural differences such as kosher or halal foods The right to life Public authorities must take steps to protect an individual’s life, in almost all circumstances, and must not take away a persons life except in very limited circumstances. For example, when lawfully defending someone from violence.This protection requires that there should be an official investigation into deaths resulting from the states failure to protect life or use of force.The right to life is a fundamental right but this does not mean that there is a right to medical treatment in all circumstances.Do not resuscitate orders placed by medical staff because they consider the patients life to be of low quality. This could be a breach of human rightsRefusal of life saving treatmentAdvance directives Deaths caused by negligenceLocal Authorities failing to act to protect an adult who is at series risk of harm Absolute Rights Right to life Right to freedom from torture, inhuman or degrading behaviour Right to freedom from slavery and forced labour Rights not to punished without law Limited rights Right to liberty and security Right to marry Right to a fair trial (including a fair hearing) Qualified Rights Right to respect for private and family life Freedom of thought, conscience and religion Freedom of expression Freedom of assembly and association The right to the peaceful enjoyment of their possessions Right to education Right to free elections The three types of human rights Absolute rights Absolute rights cannot be limited or interfered with in any way, by public authorities. An example of an absolute right in healthcare setting is the right not to be treated in an inhuman or degrading way, for example to be left in soiled bedding or to have personal care carried out in the view of others. Limited rights can be limited but only in specific circumstances. These circumstances are set out in the Human Rights Act. An example of a limited right is the right to liberty, which may be limited to people convicted of a criminal offence or people detained for treatment under mental health legislation Qualified rights Qualified rights can be limited in a wider range of circumstances than limited rights and are the majority of the rights in the Human Rights Act. This is because the protection of qualified rights can affect the rights of others. For example, someone’s right to freedom of expression may compete with another’s right to respect for private life. Public authorities can take action that limits these rights when a number of general conditions are met. Any interference with a qualified right must be: in pursuit of a legitimate aim that is set out in the Human Rights Act, e.g. to protect the rights of others or for the prevention of crime, or protection of public order or public health; based in law, i.e. allowed within existing legislation; necessary; and proportionate.
Adults with Incapacity (Scot) Act 2000
Principles Defines “Incapacity” Establishes “Office of Public Guardian” Duties for other public bodies Provisions for proxy decision making for both financial and welfare matters, including Powers of attorney Guardianship and intervention orders Medical treatment
Mental Health (Care & Treatment) (Scot) Act 2003
Sets out when people can be legally required to go into hospital, or to accept services or treatment that they may not want New rights and safeguard independent advocacy services Advance statements Named person The Mental Health Tribunal – which will hear cases under the Act The Mental Welfare Commission A set of principles underpin the new Act. Anyone who takes any action or makes any decisions about an individual’s care and treatment under the Act has to take account of: the present and past wishes and feelings of the individual the views of the individual’s named person, carer, guardian or welfare attorney the importance of the individual participating as fully as possible the importance of providing the maximum benefit to the individual the importance of providing appropriate services to the individual the needs and circumstance of the individual’s carer. The Act also describes how these functions must be carried out. They must: involve the minimum restriction on the freedom of the patient encourage equal opportunities. The Act allows for people to be placed on different kinds of compulsory order, according to their particular circumstances. There are three main kinds which might affect some people with dementia: emergency detention: allows someone to be detained in hospital for up to 72 hours where hospital admission is required urgently to allow the person's condition to be assessed. It will only take place if recommended by a doctor (usually a GP) and there is no appeal process short-term detention: allows someone to be detained in hospital for up to 28 days. It will only take place where it is recommended by a psychiatrist and agreed by a mental health officer (MHO), a specialist social worker. It is possible to appeal this order - the MHO or an advocate should be able to advise on the appeal process. compulsory treatment order (CTO): allows someone to be detained in hospital, or imposes restrictions in the community, for up to six months, with the possibility of further extensions. A CTO has to be approved by a Mental Health Tribunal. A mental health officer has to apply to the Tribunal. The application must include two medical recommendations and a plan of care detailing the care and treatment proposed for the patient. The patient, the patient's named person (see Safeguards, below) and the patient's primary carer are entitled to be present and put forward their point of view. There is a review process and the order may not necessarily last the full six months. The MHCT sets strict conditions about when these powers may be used. These are: that the person has a mental disorder (this includes dementia) medical treatment is available which could stop their condition getting worse, or help treat some of their symptoms if that medical treatment was not provided, there would be a significant risk to the health, safety or welfare of the person or to others because of the person's mental disorder, his or her ability to make decisions about medical treatment is significantly impaired that the use of compulsory powers is necessary. Safeguards The new Act has a more informal way of hearing cases than the old Mental Health Act. Instead of the Sheriff Court, there is a new Mental Health Tribunal. The Tribunal considers care plans, decides on compulsory treatment orders and carries out reviews. It consists of a panel of three people – a lawyer, a psychiatrist and a general member of the public. The Tribunal hears cases locally. A person with dementia can choose someone, called a named person, to support him or her in case, in the future, he or she might be detained or compulsorily treated under the MHCT. The named person has the same rights as the person to be notified of, attend and be represented at Tribunal hearings and to information about the person with dementia’s case. The named person has a different role from a welfare attorney. He or she can only do things which relate to the MHCT, whereas a welfare attorney has broader responsibilities. A welfare attorney takes decisions on behalf of the person with dementia, but a named person can act independently to safeguard the person with dementia’s interests. For example, a named person can apply to the Tribunal for a review of the person's compulsory treatment order with or without his or her approval. The named person has the right to put his or her own view forward, even when the person with dementia has a different view. The named person need not be the same person as the welfare attorney, Appointing a named person is a simple process that involves no cost. The Scottish Executive has published A Guide to Named Persons, which includes a nomination form. If the person with dementia has not chosen a named person, and detention or compulsory treatment under the MHCT is being considered, then the primary carer will be the named person (this is the carer who provides most or all of the person's care and support). If there is no primary carer, then the person’s nearest relative will be the named person. The Tribunal can also appoint a named person Under the MHCT, people are able to make advance statements, setting out how they would wish to be treated if they become unwell and are subject to compulsory treatment under the MHCT at some point in the future. The Tribunal and anyone responsible for giving treatment under the Act has to take an advance statement into account, although in some circumstances they may override it in the best interests of the person. The Mental Welfare Commission has a duty to make sure that treatment and care of people with a mental disorder is legal. The Commission monitors the use of the Act, including the application of the principles. They also inspect records, carry out investigations and provide advice and information.
Adult Support & Protection (Scot) 2007
Principles Defines who is an ‘adult at risk’ and what ‘harm’ is Statutory duties and powers for Scottish Local Authorities to inquire and investigate when an adult is at risk of harm. Duty to consider the provision of advocacy and other service Duties of cooperation between public bodies Three types of Protection Order benefit restrictive option of those that are available which will meet the purpose of the intervention. • the wishes and feelings of the adult at risk (past and present); • the views of other significant individuals, such as the adult’s nearest relative; their primary carer, guardian, or attorney; or any other person with an interest in the adult’s well-being or property; • the importance of the adult taking an active part in the performance of the function under the Act; • providing the adult with the relevant information and support to enable them to participate as fully as possible; • the importance of ensuring that the adult is not treated less favourably than another adult in a comparable situation; and • the adult’s abilities, background and characteristics (including their age, sex, sexual orientation, religious persuasion, racial origin, ethnic group and cultural and linguistic heritage). What duties and powers does the Act contain? Inquiries: The Act places a duty on councils to make inquiries about an individual’s well-being, property or financial affairs where the council knows or believes that the person is an adult at risk and that it may need to intervene to protect him or her from being harmed. Independent Advocacy and other support services: The council has a duty to consider providing appropriate services, including independent advocacy, to support adults where an intervention under the Act is considered to be necessary. Investigations: In order to make inquiries, the Act authorises council officers to carry out visits, conduct interviews or require health, financial or other records to be produced in respect of an adult at risk. The Act also allows a health professional (e.g. doctor or nurse) to conduct a medical examination. However, a person is not obliged to answer any questions put to them in an interview, and must be informed of their right to refuse to be examined before a medical examination is carried out. Co-operation: The Act requires the following public bodies to co-operate with local councils and with each other, where harm is known or suspected: • the Mental Welfare Commission for Scotland; • the Care Commission; • the Public Guardian; • all councils; • chief constables of police forces; • the relevant Health Board; and • any other public body or office holder that Scottish Ministers specify
Regulation of Care (Scot) Act 2001
Scottish Care Commission registers & inspects all services regulated under the Act taking account of the national care standards issued by Scottish Ministers. Scottish Social Services Council Duty to promote high standards of conduct and practice overall aims of protecting service users and carers and securing the confidence of the public in social services publish codes of practice for all social services staff and their employers National Care Standards are based On similar core values to human rights The principles are dignity, privacy, choice, safety, realising potential, and equality and diversity. Dignity be treated with dignity and respect at all times; and enjoy a full range of social relationships. Privacy have your privacy and property respected; and be free from unnecessary intrusion. Choice make informed choices, while recognising the rights of other people to do the same; and know about the range of choices. Safety feel safe and secure in all aspects of life, including health and wellbeing; enjoy safety but not be over-protected; and be free from exploitation and abuse. Realising potential opportunity to:achieve all you can; make full use of the resources that are available to you; and make the most of your life. Equality and diversity Your right to:live an independent life, rich in purpose, meaning and personal fulfilment; be valued for your ethnic background, language, culture and faith; be treated equally and to be cared for in an environment which is free from bullying, harassment and discrimination; and is able to complain effectively without fear of victimisation. SSSC has Duty of promoting high standards of conduct and practice among social services workers, and in their education and training. To deliver its overall aims of protecting service users and carers and securing the confidence of the public in social services, the Council has been given five main tasks. establish registers of key groups of social services staff publish codes of practice for all social services staff and their employers regulate the conduct of registered workers regulate the training and education of the workforce undertake the functions of the National Training Organisation for the Personal Social Services. Social service workers must: Protect the rights and promote the interests of service users and carers Strive to establish and maintain the trust and confidence of service users and carers Promote the independence of service users while protecting them as far as possible from danger or harm. Respect the rights of service users while seeking to ensure that their behaviour does not harm themselves or other people Uphold public trust and confidence in social services Be accountable for the quality of their work and take responsibility for maintaining and improving their knowledge and skills
Community Care & Health Scotland Act 2002
The Act introduced Free Personal Care For people aged 65 or over Free Nursing Care for people of any age Direct Payments For Carers Right to ask for a carers assessment Duty on Local Authorities & NHS to inform carers of rights to a carers assessment Free personal care £153 Free Nursing Care £169 (£222) LA cannot charge people living at home for personal care tasks People in care homes LA must pay at least free personal and nursing care payments towards care home fees. Direct Payments A direct payment is money paid by the local authority directly to a person whom it has assessed as needing community care or housing support services. The local authority makes the payment instead of arranging services. The person uses the payment to purchase the relevant services (for example help in the house, to go out to work or with social activities).
Has Scotland got it right?
Positive developments in legislation in past several years. Better awareness and understanding of dementia Scottish Government has made positive changes in Health and Social Care policies The framework of rights is essentially in place. However, too many people with dementia are not having their rights recognised Development of Charter of Rights. Heat Targets, Earlier diagnosis targets, Post diagnosis support pilots
Draft Charter of Rights
Charter is an initiative of the Scottish Cross Party Group on Dementia. It cover rights in all areas of life from diagnosis to end of life care The Charter is intended to empower people with dementia and their carers so that they can assert their rights ensure that those who provide health, social care and other services understand and respect the rights of people with dementia and their carers ensure the highest quality of service provision
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