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Standards of Care for Dementia in Scotland: Action to support the change programme, Scotland's National Dementia Strategy

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>1 Charter of Rights for People with Dementia and their Carers in Scotland. 2009
The rights contained within the charter are based on internationally agreed human rights and are intended to promote the respect, protection and fulfilment of all human rights of people with dementia and their carers as guaranteed in the European Convention of Human Rights and the Universal Declaration of Human Rights, The International Covenants on Economic, Social and Cultural Rights and Civil and Political Rights and the Convention on the Rights of Persons with disabilities. http://www.dementiarights.org/

Supporting legislation (All legislation available from http://www.legislation.gov.uk/)

>2 The Adults With Incapacity (Scotland) Act 2000 The general principles of the Act include ensuring that the present and past wishes of the adult (so far as they can be ascertained by any means of communication) are taken into account when determining if an intervention under the Act should be made.

>2a Part 2 of the Act gives a competent adult the right to appoint a person to make decisions on their behalf relating to general welfare and/or their finances in the event they lose capacity (a power of attorney).

>2b Part 5. Some people with dementia may not always be able to give a valid consent for any proposed treatment. The law in Scotland recognizes this and has put in place procedures and safeguards to protect people. People with dementia, as with everyone else, must have their capacity to consent to medical treatment assessed by anyone proposing to prescribe medication or carry out any other medical treatment or intervention. If they have capacity to consent then it is up to the person with dementia to either give their consent or not. If the person with dementia cannot give valid consent then the view of any proxy decision maker (a welfare power of attorney or welfare guardian) should be sought. A certificate of incapacity must be completed under Section 47 of the Adults with Incapacity Act (Scotland) Act 2000 when someone lacks capacity to consent. This certificate authorises treatment and ensures treatment is given lawfully.

>3 The Human Rights Act 1998 affects the way that public bodies such as hospitals and local authorities treat people when carrying out their functions. It adopts the articles of the European Convention of Human Rights giving them a legal basis in the UK.

These articles include

  • The right not to be treated in an inhuman or degrading way (Article 3)
  • The right to freedom and liberty (article 5)
  • The right to respect for private and family life, home and correspondence (Article 8)

>4 The Mental Health (Care and Treatment) (Scotland) Act 2003 Section 259 states that every person with a mental disorder (this includes people with dementia) shall have a right of access to independent advocacy.

>5 The Community Care and Health (Scotland) Act 2002 provides local authorities with the duty to assess the community care needs of anyone that requests it, but also to deliver a package of care in order to meet those needs.

>6 The Adult Support and Protection (Scotland) Act 2007 gives powers for local authorities to investigate circumstances where an adult at risk may be at risk of harm and creates duties for other public bodies to share information when an adult may be at risk of harm.

>7 The Carers (Recognition and Services) Act 1995 & Community Care & Health (Scotland) Act 2002. These acts set out the local authority powers and duties. Guidance to the 2002 Act states that local authority assessments should consider what support is necessary to sustain the carer's role and should meet the needs of both the cared for person and the carer, as far as possible and appropriate.

>8 The Public Services Reform (Scotland) Act 2010 Part 5 establishes Social Care and Social Work Improvement Scotland ( SCSWIS) with scrutiny functions in relation to care services and social work services.

Part 6 establishes Healthcare Scotland ( HIS) with scrutiny and other functions in relation to NHS and independent healthcare services.

>9 The NHS and Community Care Act 1990 gives local authorities the lead responsibility for planning and coordination of community care services and duties for community care assessments.

>10 The Equality Act 2010 brings together nine separate pieces of legislation into one single Act simplifying the law and strengthening it in important ways to help tackle discrimination and inequality. From 1 October 2010, the Equality Act replaced most of the Disability Discrimination Act ( DDA).

>11 The Community Care (Direct Payments) Act 1996 regulates the provision of welfare services and community care more generally. It requires local authorities to promote the welfare of persons in need in their area, and to assess need and provide services in order to do this. There are specific provisions relating to nursing and residential care.

>12 Regulation of Care (Scotland) Act 2001

>13 National Health Service (Scotland) Act 1978 There is no specific legislation covering palliative care in Scotland. It is covered under general duties within this Act. Those with palliative care needs may also be eligible for a range of social or community care services to support them in day-to-day living.

Existing Standards and Best Practice Guidance

>14 Promoting Excellence: A framework for health and social care staff working with people with dementia, and their families and carers. Scottish Government (June 2011)

>15 HEAT Target 4. Improvement in the early diagnosis and management of patients with dementia, Scottish Government (2008). http://www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/DFMH/antidepressantprescribing

>16 Standards for Integrated Care Pathways for Mental HealthNHS Quality Improvement Scotland (2008). Timely diagnosis, standard 10, 14, and 21 http://www.icptoolkit.org/

>17 SIGN 86 management of patients with dementia. A national clinical guideline. Scottish Intercollegiate Guidelines Network (2006 reviewed 2009). http://www.sign.ac.uk/guidelines/fulltext/86/index.html

>18 Working with independent advocates. The Mental Welfare Commission for Scotland (2009). www.mwcscot.org.uk

>19 Standards for integrated care pathways for mental health.NHS Quality Improvement Scotland (2008).

  • Standard 15,Suitability for psychological and/or psychosocial interventions
  • Standard 16,Person centred care
  • Standard 17,Single care plan
  • Standard 18,Recording medication decisions
  • Standard 20,Inpatient admission and discharge
  • Standard 21,Measure of needs and outcome
  • Standard 27,Treatment for cognitive impairment
  • Standard 28,Matched intervention
  • Standard 29, End of Life

http://www.icptoolkit.org/

>20 Design for People with Dementia: Audit Tool. The University of Stirling: Dementia Services Development Centre (2008). http://www.dementiashop.co.uk/?q=node/142

>21 CEL 6, NHS Continuing Healthcare. Scottish Government (2008) http://www.sehd.scot.nhs.uk/mels/cel2008_06.pdf

>22 Coping with dementia: a practical guide.NHS Health Scotland, (2009). www.healthscotland.com

>23 Living and Dying Well: A national action plan for palliative and end of life care in Scotland. Scottish Government (2008). www.scotland.gov.uk/publications

>24 Do Not Attempt Cardiopulmonary Resuscitation ( DNACPR) - Integrated Adult Policy.NHS Scotland (2010). http://www.scotland.gov.ukPublications/2010/05/24095633/0

>25 Liverpool Care Pathway for the Dying Patient. Marie Curie Palliative Care Institute Liverpool (2010) http://www.mcpcil.org.uk/liverpool-care-pathway/index.htm

>26 Facing dementia. Health Scotland (2008). A booklet for those who are either worried about dementia or who have been diagnosed with dementia. It provides reassurance and suggests practical steps to improve or maintain dignity and the quality of life as far as possible http://www.healthscotland.com/documents/15.aspx

>27 National care standards. Scottish Government (2010).

  • Care homes for people with mental health problems
  • Care Homes for Older People
  • Housing Support Services
  • Support services:
  • Care at Home
  • Nurse agencies

http://www.scotland.gov.uk/Topics/Health/care/17652/National-Care-Standards-1-1

>28 National care standards; Care Homes for Older People. Scottish Government (2010).

Standard 19 is about support and care in dying and death. It states that people living in care home can be confident that the home's staff will be sensitive and supportive during the difficult times when someone dies.

Standard 14 is about keeping well. It states that people who live in care homes should be confident that the care home staff will know their healthcare needs and meet them in a way that suits them best. http://www.scotland.gov.uk/Topics/Health/care/17652/National-Care-Standards-1-1

>29 Dementia: ethical issues. Nuffield Council on Bioethics (2009). http://www.nuffieldbioethics.org/dementia

>30 Let's get personal- personalisation and dementia. Alzheimer Scotland (2010). http://www.alzscot.org

>31 Caring Together: The Carers Strategy for Scotland 2010 - 2015. Scottish Government (2010). http://www.scotland.gov.uk/Publications/2010/07/23153304/0

>32 Decisions relating to cardiopulmonary resuscitation. British Medical Association, Resuscitation Council ( UK) and Royal College of Nursing (2007). http://www.resus.org.uk/pages/dnar.pdf

>33 Making good care better: National practice statements for general palliative care in adult care homes in Scotland. Scottish Partnership for Palliative Care ( 2006). www.palliativecarescotland.org.uk/publications

>34 Gold Standards Framework provides a framework in primary and community care for effective person centred planning during last 12 months of life. www.gsfs.scot.nhs.uk/

>35 Standards for Integrated care pathways for mental health.NHS Quality Improvement Scotland (2007). Standard 29, End of life care. http://www.icptoolkit.org/

>36 Talking Points: A personal outcome approach Joint Improvement Team (2006) http://www.jitscotland.org.uk