CONSENT, ASTHMA NETWORK GROUPS AND THE EXPERT PATIENT PROGRAMME

1. CONSENT, ASTHMA NETWORK GROUPS AND THE EXPERT PATIENT PROGRAMME ELIZABETH,GRACE, JO, MEGAN

2. Incompetence • Beauchamp and Childress (2001) define incompetence as the inability to express a preference, understand situations and consequences, understand relevant information and give a reasonable decision.

3. Consent and incompetence Issues can arise in situations involving • children, • people who have particular religious beliefs, • emergency situations • adults who lack capacity.

4. Consent and incompetence Capacity can become reduced or one may become temporarily incapacitated as a result of • shock • pain • medication • drugs • confusion • fatigue • their medical condition (DH 2001a)

5. Capacity

6. Who decides?

7. Healthcare professionals • have an ethical obligation not to inflict harm on others (the non-maleficence principle) • contribute to the patient's welfare by providing benefits • balance benefits and drawbacks to produce the best results (the beneficence principle) • (Beauchamp and Childress 2001).

8. If a person is not capable of giving or refusing consent, and there is no available advance statement, it is still lawful to provide treatment and care (DH 2001a). This treatment or care must be in the person's best interests.

9. It should not be confined to best medical interests and should take into account • physical • psychological • emotional • spiritual • financial • social interests of the person.

11. Best interests… To make a decision based on the patient's best interests, • it is necessary to protect his or her dignity, comfort and rights, • take into account the patient's known wishes and the views of people close to the incapacitated person (BMA 2000b).

12. On Human rights • the right to respect for private and family life, stipulates that relatives of an incompetent patient should be involved in decision making about medical care but it states that the individual's right to privacy and confidentiality must be respected (BMA 2000a).

13. Good practice… • While the patient is incapacitated, it is considered good practice to involve his or her relatives in the decision-making process as interpreters of the patient's values (BMA 1995b).

14. point to note… • no one can give consent for another adult (NMC 2002, DH 2001a) • it is important to maintain a balance between preserving the patient's confidentiality and obtaining enough information to make an informed assessment • The courts can determine what is in the patient's best interest in disputes

15. MENTAL CAPACITY ACT (2005)

16. Mental Capacity Act 2005 Will come into force in April 2007 • The act is underpinned by five key principles. These are…

17. MENTAL CAPACITY ACT (2005) • Individuals must retain the right to make what might be seen as eccentric or unwise decisions. • Best interests - anything done for or on behalf of people without capacity must be in their best interests. • Least restrictive intervention - anything done for or on behalf of people without capacity should be the least restrictive of their basic rights and freedoms.

18. MENTAL CAPACITY ACT (2005) • Presumption of capacity - every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. • The right for individuals to be supported to make their own decisions - people must be given all appropriate help before anyone concludes that they cannot make their own decisions.

19. The act, will mean changes.. For how health practitioners intervene with those who lack the capacity to consent to treatment. • It allows for a general authority - someone who can act in the best interests of an adult who lacks capacity - providing legal protection to carers and professionals. • It allows for the use of a lasting power of attorney - where a person may appoint an attorney to act on his or her behalf should he or she come to lack capacity.

20. Mental capacity act 2005 • The act introduces court-appointed deputies who can make healthcare decisions as determined by the court. • It provides a basis for advance decisions (advance directives and living wills) and the circumstances where health practitioners must follow these. • It also introduces a new Court of Protection that will make decisions about serious, irreversible healthcare interventions.

21. More about IMCAs • independent mental capacity advocates (IMCAs), who will support and represent people when a serious decision has to be made about treatment or accommodation.

22. IMCAs • An IMCA can be appointed for a person who lacks mental capacity and represent them when a serious decision is being made about treatment or accommodation. • The IMCA will voice the person's wishes and can challenge the decision maker. • The IMCA will also be able to obtain a further medical opinion where necessary

23. Assessing capacity to consent When to assess capacity • indication that the person may lack capacity to understand, believe or process the information being given to them. • from a pre-existing condition, such as a learning disability or a neurological condition. • due to the onset of a deteriorating state such as dementia, or an acute health crisis, such as mental distress, a physical illness, fatigue or pain. • However, the presence of any of these is not, in itself, sufficient evidence of a lack of capacity. • Assessment of capacity alongside the consent process is an ongoing discussion between the professional and the patient.

24. Who assesses capacity? • person responsible for the intervention proposed, and obtaining consent, holds responsibility for assessing the patient's capacity as well. • does not require the involvement of psychologists or medics in every case • nurses are usually the professionals in most contact with the patient, it is important that they are more alert to the need to assess individuals, to raise the issues of capacity in certain situations and to highlight the necessity to review assessments.

25. What to assess? That the patient can • Comprehend and retain the necessary information • Believe it • Be able to weigh up the information given, balancing risks and needs to arrive at a choice

26. The Expert Patient Programme DoH (2001) A new Approach to Chronic Disease Management for the 21st Century.

27. This was launched in response to the untapped knowledge of the patient and in an effort to help patients move from being passive recipients of care to being able to manage their own condition.

28. The programme aims • To help patients restore control over their lives. • Reduce severity of symptoms • Increase their confidence and increase resourcefulness.

29. Reduce acute exacerbations of the disease and enhance psychosocial well-being. • The programme creates a culture where patients with chronic conditions are empowered to be the expert.

30. Expert patient courses run for two and a half hours per week for six weeks. • They are delivered by people who live with a long-term condition, or by people who have direct experience of living with someone who has a long-term condition.

31. In these programmes, people learn a variety of relevant skills, which include:

32. Techniques to help manage tiredness, pain and emotional changes • Planning the future • Developing skills to deal with fear, anger, frustration and depression

33. Develop healthy eating patterns and improve general health through diet, exercise and relaxation • Communicating most effectively with friends and healthcare professionals

34. Reduce and manage stress • Understand more about using medication correctly to manage the condition • Get more out of health services by using them effectively

35. Evaluate new treatments and information • Recognise and act on symptoms

36. Expert Patient - Dream or Nightmare? Shaw (2004) states that 63 % of doctors think that better informed patients will require more of their time. In addition Doctors thought that the expert patient is the demanding, unreasonable, time consuming or the patient who knows it all. • •

37. However, studies show that a reduction in visits to doctors of 42% - 45% can be achieved.

38. Asthma Network Group The Asthma Network Group has been disbanded a few years ago due to lack of interest and participation. However, there are many individual local support groups on the internet and advice for patients from sites such as: • Net Doctor • British Allergy Foundation • NHS direct • Health and Safety Executive – (occupational guidance) • St Johns Ambulance – (first aid advice for asthma) Many of the international/global groups are US Based

39. Asthma UK run a scheme to come and speak to local community groups and schools to provide information on asthma and its management. You can either book a speaker or volunteer to become a speaker yourself!! (Asthma UK will provide the training) • Patient Health International have launched video clips on ‘YouTube’ to help educate asthma patients on the best way to use their inhalers. They show nurses demonstrating how to use inhaler devices. They do not replace expert advice, but remind patients of the correct inhaler technique, which can help make a difference to asthma control. Improving techniques mean that patients can stay on the lowest dose possible. Lapses in technique over time can similarly mean lapses in control of asthma, which may go unnoticed.

40. Patient Health International - have launched video clips on ‘YouTube’ to help educate asthma patients on the best way to use their inhalers. They show nurses demonstrating how to use inhaler devices. They do not replace expert advice, but remind patients of the correct inhaler technique, which can help make a difference to asthma control. Improving techniques mean that patients can stay on the lowest dose possible, whereas lapses in technique over time can similarly mean lapses in control of asthma, which may go unnoticed. ---------Simon?----------

41. The British Lung Foundation runs ‘Breathe Easy’ - a network of 22,000 supporters & 130 patient support groups, which was developed following recognition of how isolating lung disease is. • Information leaflets and booklets • Breath Easy magazine • Pen-pal scheme • Meetings • Campaigns for change • Fund raising • Social events • Separate baby breath easy groups

42. References • Beauchamp T, Childress J (2001) Principles of Biomedical Ethics. Fifth edition. Oxford University Press, Oxford. • Department for Constitutional Affairs (2006a) Mental Capacity Act 2005: Summary.www.dca.gov.uk/menincap/bill-summary.htm ( Accessed: February 6 2007.) • Department of Health (2001a) Reference Guide to Consent for Examination or Treatment. The Stationery Office, London. • Department of Health (2001b) Seeking Consent: Working with People with Learning Disabilities. The Stationery Office, London. • Department of Health(2001) The Expert Patient: A New Approach to Chronic Disease Management for the21st Century.London: The Stationary Office

43. References • Metcalfe, J. (2005). The management of patients with long term conditions. Nursing Standard. 19, 45, 53-60 Nursing and Midwifery Council (2000) Resuscitation. Do Not Resuscitate Orders Position Statement. NMC, London. [ • Nursing and Midwifery Council (2004) The NMC Code of Professional Conduct: Standards for Conduct, Performance and Ethics. NMC, London. • Shaw, J. (2004). Expert Patient-Dream or Nightmare? British Medical Journal. Vol 328. 27. P723