Health and Social Care Bill

Memorandum submitted by Dr Philip Howard (HS 44)

Contents

1.1 Summary

1.2 Introduction

1.3 Outline of submission

2 Medical mediation

2.1.1 Case history. "Sam’s" story.

2.1.2 Background

2.1.3 GMC, BMA and Government recommendations.

2.1.4 Cost of litigation

2.1.5 Disadvantages of current system of complaints/dispute management

2.1.6 Proposal: Independent medical mediation (IMM)

2.1.7 Advantages of IMM

2.1.8 Suggested amendments to clause 170

2.1.9 Explanatory notes

3 Presumption if favour of the primary carer to become the Court appointed deputy

3.1.1 Background

3.1.2 Proposal: Presumption in favour of the primary carer as court appointed deputy

3.1.3 Proposed amendment to the Mental Capacity Act 2005.

4 Conclusions

1.1 Summary

1. There are currently well over one million adults with mental incapacity in the UK. The medical and nursing care of these individuals may prove difficult. Disagreements not uncommonly arise between the carers and relatives of adults lacking mental capacity regarding both medical treatment and placement. Resolution of such disputes is often costly, time-consuming and adversarial. Above all current complaints procedures apply retrospectively so that the incapacitated persons condition and circumstances cannot be improved. Dispute resolution should include contemporaneous independent medical mediation in order to resolve the issues to the benefit of the patient at the material time. The Health and Social Care Bill accommodates improved complaints procedures and advocacy services but does not include medical mediation.

2. Relatives and carers of those who lack capacity often find that decisions are made by those in ‘authority’ on their behalf. In the case of many adults and most patients with learning difficulty, powers of attorney have not been obtained or conferred on relatives or the primary carers. The system of applying for court appointed deputyship should be simplified. There should be a legal presumption that longstanding relatives and carers, who can demonstrate their prior responsibilities in caring for those that lack capacity, should be made court appointed deputies.

3. I have illustrated the need for independent medical mediation and a simplified application system to become a court appointed deputy by reference to the care and placement of a young man (‘Sam’) with profound learning difficulty and very serious mental and physical disability who has been largely cared for by his mother. The mother has given her written permission for disclosure of information and has given details of her problems to Mr Tom Brake MP and Mr Paul Burstow, Minister for Health and Social Care.

1.2 Introduction

4. I have been a consultant physician in General Medicine and Gastroenterology and Senior Lecturer in Medicine for 18 years. I have a LLM degree from Cardiff University in Medical Law and am the principal co-author of an undergraduate textbook entitled "Medical Law and Ethics" Blackwells 2006. I have both an academic and clinical interest in mental incapacity legislation. I presented evidence to the Scottish Parliament during the passage of the Adults with Incapacity (Scotland) Bill in November 1999 and to the Joint Scrutiny Committee in the case of the Mental Capacity Bill in October 2004 and the Mental Health Bill in 2009. I have acted as an expert witness in the Coroner‘s Court, High Court, Judicial Reviews and in the Appeal Court in the case of Burke in 2005.

1.3 Outline of submission

5. My submission is concerned with the resolution of disputes and disagreements regarding the care and management of patients with mental incapacity arising from either learning disability or an acquired condition such as dementia. There are said to be between 200 and 400 thousand patients with learning disability in the UK. According to the Alzheimer’s Society, there are already more than 750,000 people in the UK suffering from dementia. Those with mental incapacity are disproportionately represented amongst hospital patients.

6. This submission will therefore focus on two separate but related issues concerned with the difficulties faced by the carers and relatives of those who lack mental capacity to make decisions for themselves.

7. These issues relate to what I shall describe as independent medical mediation and the need to facilitate the appointment of the primary carer as a court appointed deputy.

2 Medical Mediation.

8. I shall begin by illustrating the need for medical mediation with reference to a case. The first involves a 22 year old man with profound learning disability called "Sam". His mother has given written permission for his details to be described, though I shall not reveal his exact identity.

2.1.1 Case history.

Sam’s story

9. Sam suffers from an extremely rare neurodegenerative disorder which will ultimately prove fatal. He cannot speak and is tube fed. He suffers from behavioural disturbances, especially when he is ill or his mother is under stress. He also has both real epileptic fits and ‘pseudo’ seizures which can be difficult to distinguish from true epilepsy and behaviour disturbance. He is totally dependent on his mother for his personal needs. He lives with her and his younger brother and sister.

10. Sam’s mother looks after him on a 24 hour basis and sleeps in his room. He is at risk of epilepsy, aspiration pneumonia, epileptic fits and pressure sores as well as unintended self harm. He can barely walk with assistance and is at risk of falls. He tends to be overactive. In the final stages of his disease his over activity will turn to increasing apathy and he will eventually die of his condition. Sam is terminally ill.

11. His mother has been troubled by neighbours and had to move house last year because of what she perceived as harassment. She does not rely for assistance on social services or district nurses and provides all Sam’s personal and nursing care needs herself on a round the clock basis. In the last four years he has been admitted to hospital only twice, and then only for a day at his mother’s insistence. Her care has been heroic and the attention given by his younger brother and sister has been remarkable.

12. Since contacting her constituency MP in mid December and the involvement of Mr Paul Burstow, her circumstances have been considerably improved and she plans to move to more suitable accommodation in the beginning of March.

2.1.2 Background

13. Under the Mental Capacity Act 2005 (MCA), where adult patients lack capacity, decisions may be made in their ‘best interests’ regarding medical treatment and care. Deprivation of liberty safeguards (DOLS) may be instituted if decisions regarding placement need to be made in order to provide treatment or care.

14. Disagreements regarding medical treatment and placement may arise between the family, friends or carers of those who lack capacity and those who have legal responsibility for their care. This may be particularly the case with end-of-life decision making, decisions regarding life sustaining treatment and ‘do not resuscitate orders’ as outlined in the GMC document ‘Treatment and care towards the end of life: good practice in decision making’ July 2010.

15. Under the Adults with Incapacity (Scotland) Act 2000, there is statutory provision for a second opinion procedure. Where there is a disagreement regarding the treatment of an incapacitated person between the doctor and welfare attorney, the medical practitioner may request the Mental Welfare Commission to nominate a medical practitioner (the "nominated medical practitioner") from the list established and maintained by them to give an opinion as to the medical treatment proposed. No such provisions apply under the Mental Capacity Act 2005.

16. In the case of those with learning disability who have become adult at the age of 18 years, parental responsibilities remain but the legal responsibility for treatment changes. It is not possible for the person with learning disability to confer powers of attorney so that another person can make decisions on their behalf. Hence, Sam’s mother, having had parental responsibility up to his 18th Birthday cannot obtain from him powers of attorney and currently finds the process for applying for court appointed deputyship cumbersome. Furthermore she is concerned that powers could be conferred on a representative of the local authority.

17. Similar problems may arise for adult with acquired cognitive impairment e.g. due to dementia. Relatives and carers may wish to be involved in treatment and placement decisions. For example, relatives may wish to continue to look after an incapacitated person at home. Disagreements may arise concerning the appropriateness of such arrangements and deprivation of liberty safeguards (DOLS) may be instituted by the relevant authority to effectively enforce placement in the individual’s best interests for care or treatment. Relatives may complain about the quality of treatment and care to the incapacitated patient.

2.1.3 GMC, BMA and Government recommendations.

18. The GMC recommends that where disagreements arise between relatives and those caring for patients who lack mental capacity an independent advocate should be involved [1] . Whilst there are mental health advocates under the Mental Health Act 1983 [2] , independent medical mediation is not yet available under the Mental Capacity Act 2005.

19. In 2008 the BMA recommended mediation when other means had failed [3] .

"Where the methods outlined above do not successfully resolve the dispute, it may be good to involve a mediator. Any dispute that is likely to be settled by negotiation is probably suitable for mediation. A mediator is an independent facilitator. It is not the role of a mediator to make decisions or to impose solutions. The mediator will seek to facilitate a decision that is acceptable to all parties in the dispute". http://www.bma.org.uk/images/MentalCapacityToolKit July2008_tcm41-175571.pdf

20. In the White Paper "Equity and Excellence: Liberating the NHS" (para 2.24), it was proposed to set up a patients’ complaints system which included advocacy. A complaints and advocacy service was to be the responsibility of Health Watch. However, the White paper did not specify how this service would apply to the relatives and carers of incapacitated patients who were concerned about their care or treatment or placement decisions.

"2.24 We will strengthen the collective voice of patients, and we will bring forward provisions in the forthcoming Health Bill to create HealthWatch England, a new independent consumer champion within the Care Quality Commission. Local Involvement Networks (LINks) will become the local HealthWatch, creating a strong local infrastructure, and we will enhance the role of local authorities in promoting choice and complaints advocacy, through the HealthWatch arrangements they commission."

2.1.4 Costs of litigation.

21. The costs of litigation are rising. In 2001 the National Health Service was facing a clinical negligence bill of nearly £4bn, equivalent to about 10 per cent of England's annual health care budget [4] . The anticipated bill for actual and anticipated claims had risen sevenfold in 5 years. According to the NHSLA Annual Report in 2009/10 £296.59m were paid out in damages, excluding £121.48m in claimant legal costs and £42.23m in defence costs.

2.1.5 Disadvantages of current system of complaints/dispute management

22. The costs, time and emotional investment in complaints are excessive for both the claimants and health care professionals. The current system of investigation into complaints are retrospective and ineffective in obtaining satisfactory solutions as the complaints system focuses on problems that have occurred in the past – and often up to years previously. Complaints often arise when there has been a significant or irretrievable breakdown of communication and trust between relatives and/or patients and healthcare professionals. In Scotland, the Mulcahy Report [5] on the NHS Mediation Pilot reported that a 70% sample of claimants were totally or very dissatisfied with the normal claims process, even where compensation was awarded.

23. The importance of non-monetary benefits such as apology, explanation and reassurance of changes in procedure, together with the opportunity for patients, relatives and clinicians alike to be heard informally and privately, are all substantiated, as is the possibility of creative outcomes. Often relatives, friends and family are in a state of shock and cannot always determine the issues with detachment.

2.1.6 Proposal: Independent medical mediation (IMM)

24. Currently, second medical opinions may not always be truly independent but may simply back up the views of the supervising clinicians. Therefore, where there are disputes between the relatives and carers of those with incapacity and their medical attendants should be a system of independent medical mediation (IMM). Where disputes or disagreements arise between relatives or carers and healthcare professionals, an IMM could be called in a timely fashion to try and mediate between the parties.

25. The independent medical mediator ought normally to be someone who is not directly involved in the patient’s care. Independent means that (s)he would be acceptable to the relatives or carers who were disagreeing with the decisions of healthcare professionals or social services. The mediator should be medically qualified but not necessarily a Consultant. Indeed, it could be that an experienced General Practitioner would have a good overall perspective of the patient’s circumstances, including the social care needs.

2.1.7 Advantages of IMM

26. It would allow an independent medical opinion to review the situation. The emphasis would be on obtaining a satisfactory outcome for the patient and would hopefully mean that the misunderstandings between the disputants would become a secondary consideration, or preferably not be considered at all in the interests of the patient. Current complaints systems are adversarial and often aggravated by the time taken to resolve the issues and the increasingly ingrained feelings of hostility and frustration that can arise. Moreover, it may be difficult for a relative to complain about the very people who are responsible for the care of the incapacitated person and the doctor-patient relationship may deteriorate [6] .

27. "BMA Council recognises the value of mediation in terms of the benefits conferred on claimants and clinicians by both the process itself and the flexible outcomes which it makes possible, and supports a campaign to raise awareness of the benefits of mediation across the medical profession and to supporting its use by clinicians and their legal representatives, wherever possible, to resolve clinical negligence and other disputes. (BMA Council 9 May 2001)".

28. Since the provision of IMM might mean that decisions would be open to independent scrutiny, it would encourage a spirit of openness and discourage ‘medical paternalism’ and the idea that ‘doctor knows best’. Once medical professionals realise that their decisions may be scrutinised it would encourage greater care in decision making and in particular consideration of the views of family and carers.

29. No particular sanctions would be immediately applicable which would encourage a flexible and informal process, which could be adapted to the circumstances of the case. Nevertheless, information derived at mediation could subsequently be used by the Court of Protection or other legal proceedings. Moreover, under the Civil Procedure Rules, (CPR 44.5) mediation is increasingly seen as a necessary preliminary to court proceedings. The Civil Procedure Reforms (CPR) in England & Wales make it clear that trial is to be a last resort, and will encourage the use of mediation if necessary by court order.

30. Since IMM would be contemporaneous it would enable resolution of problems at the material time. Current complaints procedures are retrospective and therefore cannot provide solutions to patient’s difficulties.

31. Whilst there should be appropriate remuneration for the mediator, the process would be less costly than current complaints procedures and would not normally entail the services of lawyers, with the attendant costs. It would mean that healthcare professionals might be able to make suggestions and alterations to management plans at the material time.

2.1.8 Suggested amendments to clause 170.

32. Proposal

Changes to clause 170(Changes in bold)

170 Independent advocacy and medical mediation services

(1) After section 223 of the Local Government and Public Involvement in Health

Act 2007 insert-

"223A Independent advocacy and medical mediation services

After clause (2) (d)(ii) insert -

(3) in this section, "independent medical mediation services" means services providing medical expertise and advice by an independent registered medical practitioner regarding serious medical treatment and placement decisions, for the assistance and benefit of an adult who lacks mental capacity.

(4) "Serious medical treatment "means treatment which is considered necessary to sustain life or prevent longterm mental or physical disability.

(5) "Placement" means the placement of the mentally incapacitated person in a place of residence such as a hospital, hospice, residential or nursing home or other accommodation.

(6) An "independent registered medical practitioner" means a registered General Practitioner or Consultant with the relevant knowledge and expertise who is not primarily responsible for the treatment or placement of the mentally incapacitated person and whose involvement is acceptable to the primary carer, or carers, involved in the dispute.

1.4.9 Explanatory notes

33. The mediator need not be a specialist. Providing (s)he has sufficient understanding of the medical issues, an experienced General practitioner would be in a position to understand the overall circumstances of the patient including the need for placement and the views of relatives. The purpose of the mediator is to achieve the best solution for the patient.

34. The mediator would be ‘independent’ if not directly involved with the care and treatment of the patient and would be acceptable to those in dispute, particularly the claimants. Where complaints arise, there is often a suspicion that an ‘expert’ will be called who will side with the medical and nursing staff. By exploring all the issues including misunderstandings and poor communication in a non-judgemental way, the mediator is in a position to arrive at a contemporaneous decision and foster a ‘no blame’ approach. The fact that decisions made on behalf of the incapacitated might be open to independent scrutiny might have collateral benefits in improving the quality of decision-making in other cases, knowing that there may be independent scrutiny.

35. Since, the mediator is medically qualified, if there was a failure to reach agreement, the views of the mediator would be influential in providing a contemporaneous account and opinion for any future legal proceedings.

2 Presumption in favour of the primary carer to become the court appointed deputy.

2.1 Background

36. The parents of those with learning difficulty often face enormous difficulties when their child becomes an adult at 18 years of age. This has been highlighted in a number of reports and is a matter of everyday experience for those who deal with adults with learning difficulty. For example, according to the Mental Welfare Commission for Scotland Report expresses the views of many such parents:-

"The issues parents face when their child with a learning disability moves from child to adult health and social care services are quite considerable. Services their child has been receiving from familiar staff are suddenly at risk. It is not always clear what will be put in place and who will step in to continue to provide this care and support. A number of important case conferences and case discussions are held during this transition period. Key decisions have to be made and actions taken by, or on behalf of, the young person that may have a long lasting impact on their health and welfare. Parents understandably may fear a loss of control".

37. The partners, sons or daughters of adults with acquired mental incapacity e.g. arising from dementia may also experience feelings of alienation when decisions are made for the mentally incapacitated person regarding treatment or placement. The responsibility for medical decisions rests with the doctor in charge providing that there is a reasonable belief that the person lacks capacity (S.5.1.(b)(i)) and that the doctor is acting in the patient’s best interests (s. 5.1(b)(ii)). Institutional and domiciliary care and treatment may both have considerable financial and social implications for the relatives and primary carers.

38. The overwhelming majority of elderly patients have not created powers of attorney for others to make decision on their behalf in the event of incapacity. Parents of those with learning difficulty can only acquire legally recognised decision-making powers by applying to become a court appointed deputy. Nevertheless for many elderly relatives the application process seems complex and there is a worry that the Court may favour an official from Social Services as deputy. For example, in Scotland where the guardianship order is to relate only to the personal welfare of the adult, the chief social work officer of the local authority may be appointed by the Sherriff as guardian(s. 59 (b)).

2.1.2 Proposal: Presumpion in favour of the primary carer as court appointed deputy.

39. There should be a rebuttable presumption, that if the primary carer agrees to the appointment and can demonstrate that they have taken responsibility for the care of the incapacitated person, that the primary carer should become the court appointed deputy.

2.1.3 Proposed amendment to the Mental Capacity Act 2005.

40. After S 19(1)(b) insert -

Presumption in favour of the primary carer as court appointed deputy.

(1) The Court of Protection should appoint the primary carer as Court appointed deputy, subject to section 2, where it has been established to the satisfaction of the Court that the person to be appointed has-

(a) demonstrated their knowledge of the incapacitated person’s condition and circumstances,

(b) demonstrated their involvement with the care of the incapacitated person,

(c) demonstrated their ability to carry out the functions of deputy,

(d) understood the roles and responsibilities of being a deputy,

(e) not been paid in a professional capacity to look after the incapacitated person, and

(f) consented to the appointment

(2) The Court shall not appoint any individual as deputy where -

(a) there would be a risk of a serious financial conflict of interest between the proposed deputy and the incapacitated person regarding their care, treatment or residence, or

(b) the appointment would be contrary to the best interests of the incapacitated person having considered all the relevant circumstances, or

(c) there would be a risk of serious harm to the physical or psychological wellbeing of the incapacitated person

(3) Where there is serious doubt concerning the suitability of a primary carer as deputy, the Court should take into account the views of the incapacitated person’s general medical practitioner, or other suitable medical opinion, in matters relating to the health or welfare of either the incapacitated person or of the carer.

(4) Subsection 2(a) shall not be regarded as applying to an individual merely by reason of being a close relative or residing in the same place as the incapacitated person.

(5) The term "primary carer" means the person who has been mainly responsible for providing care for the incapacitated person. There shall be a rebuttable presumption that the parent, or parents, of an adult with learning disability are the primary carer(s).

(6) Being "paid in a professional capacity" means caring for the incapacitated person whilst receiving a salary but excludes being in receipt of statutory grants and allowances for care and maintenance.

3. Conclusion

41. The NHS relies heavily on informal carers to provide help and assistance for relatives who lack the mental capacity to care for themselves. The monetary savings of the services of informal carers is unknown but has been estimated to be over £30bn per year. The Government quite rightly has promoted the view that there should be "no decisions about me without me". This should be extended to the relatives and carers of those who lack the capacity to make decisions for themselves.

42. In view of the importance of unpaid ‘informal’ carers for those who lack capacity, there should be a presumption in favour of the primary carer, or carers, to be appointed deputy. There should also be provision within the Bill for independent medical mediation to resolve any disagreements concerning serious medical treatment and placement at a time when resolution of such difficulties can still benefit the incapacitated person.

Dr Philip Howard MA (Oxon) MD (London) MA LLM FRCP FRCP(Edin)

Consultant Physician and Senior Lecturer in Medicine

February 2011


[1] 47 You should aim to reach a consensus about what treatment and care would be of overall benefit to a patient who lacks capacity. Disagreements may arise between you and those close to the patient, or between you and members of the healthcare team, or between the healthcare team and those close to the patient. Depending on the seriousness of any disagreement, it is usually possible to resolve it; for example, by involving an independent advocate, seeking advice from a more experienced colleague, obtaining a second opinion, holding a case conference, or using local mediation services. In working towards a consensus, you should take into account the different decision-making roles and authority of those you consult, and the legal framework for resolving disagreements.

[1] 48 If, having taken these steps, there is still significant disagreement, you should seek legal advice on applying to the appropriate statutory body for review (Scotland) or appropriate court for an independent ruling. The patient, those authorised to act for them and those close to them should be informed, as early as possible, of any decision to start such proceedings, so that they have the opportunity to participate or be represented.

[2] From April 2009, statutory access to an Independent Mental Health Advocate (IMHA) has been available to patients subject to certain aspects of the Mental Health Act 1983. IMHAs exist to help and support patients to understand and exercise their legal rights. IMHAs are available to most detained patients as well as patients on supervised community treatment or guardianship. Other patients whose treatment is subject to the special safeguards provided by the Act are also eligible for the services of IMHAs.

[3] http://www.bma.org.uk/images/MentalCapacityToolKit%20July2008_tcm41-175571.pdf

[4] National Audit 2001.

[5] Mulcahy L., Selwood M., Summerfield L., Netten A. (2000): Mediating medical negligence claims: an option for the future? Stationary Office p.11.

[6] Mediation, clinical negligence claims and the medical profession : a policy paper

[6] 29 November 2007. http://www.bma.org.uk/employmentandcontracts/2_expert_witnesses/Mediation.jsp#1