Foundation trusts and children's participation: Some new opportunities?

Medical Law International

Volumn 8, Issue 4, 2007, Pages 325-348

  Hagger, Lynn ^a  

^a UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

CHILD ADVOCACY; CHILD HEALTH CARE; FAMILY; HEALTH CARE ORGANIZATION; HEALTH CARE POLICY; HUMAN; LEGAL ASPECT; MEDICAL DECISION MAKING; REVIEW;

EID: 37149031238     PISSN: 09685332     EISSN: None     Source Type: Journal    
DOI: 10.1177/096853320700800403     Document Type: Review

References (152)

1. See, e.g., L. Hagger, 'Some Implications of the Human Rights Act 1998 for the Medical Treatment of Children' (2003) 6 Medical Law International 25-51.
2. The United Nations Convention on the Rights of the Child 1989, Department for Education and Skills and Department of Health (DoH) (2004): Every Child Matters: Change for Children - joint planning and commissioning framework for children, young people and maternity services, and the Children Act 2004, respectively.
3. Carnegie United Kingdom Trust (2002) Measuring the Magic? Evaluating and researching young people's participation in public decision-making at p. 2
4. and M. Yates and J. Jouniss (eds.) Roots of Civic Identity: International Perspectives on Community Service and Activism in Youth (Cambridge, Cambridge University Press, 1998) passim.
5. Every Child Matters supra n. 2. The extent of this compliance is one of the measures used by the Healthcare Commission when it inspects NHS organisations and ranks their standards.
6. National Children's Bureau (2005) Children and Young People's Views on Health and Health Services: a review of the evidence.
7. M. Hill , J. Davis, A. Prout and K. Tisdall 'Moving the Participation Agenda Forward' (2004) 18 Children and Society 77-96 passim.
8. Supra n. 5.
9. See, for example, the implementation of the NHS National Plan (DoH, 2000): the author has twenty years' experience in the NHS as a member of the now defunct Community Health Councils and as a Non-executive Director of NHS Trusts, latterly as Chairperson of the Sheffield Children's NHS Foundation Trust.
10. Supra n. 5.
11. W. Moyes, 'The kids are alright, but are they ready to be governors?' 31 August 2006 Health Service Journal and personal communication from W. Moyes, Executive Chairman of Monitor, Foundation Trusts' regulatory body, to the author.
12. Discussed infra at nn. 129-30.
13. Exclusion from Parliamentary elections would be a case in point.
14. N. Daniels and J. Sabin, 'Limits to health care: fair procedures, democratic deliberation, and the legitimacy problem for insurers.' (1997) 26(4) Philosophy and Public Affairs 303-50
15. and L. Doyal, 'Rationing within the NHS should be explicit. The case for.' 314 BMJ 1114-18.
16. C. Ham, 'Priority setting in the NHS: Reports from six districts' (1993) 307(6901) BMJ 435-8
17. P. M. Mullen, 'Public involvement in health care priority setting: are the methods appropriate and valid?' in A. Coulter and C. Ham (eds.) The Global Challenge of Health Care Rationing (Buckingham, Philadelphia: Open University Press, 2000).
18. See, for example, the recent consultation exercises discussed infra at n. 30 and the inclusion of lay representatives on bodies such as the National Institute for Clinical Excellence discussed by K. Syrett, 'Nice Work? Rationing, Review and the 'Legitimacy Problem' in the New NHS' (2002) 10 Medical Law Review 1-27
19. Department of Health (2006) www.dh.gov.uk/PolicyAndGuidance/ PatientChoice/fs/en.
20. N. Daniels, 'Accountability for Reasonableness in Private and Public Health Insurance' in Coulter and Ham supra n. 15.
21. Ibid. and O. F. Norheim, 'Increasing demand for accountability: is there a professional response?' at p. 227 in Coulter and Ham supra n. 15.
22. Supra n. 14.
23. S. Jasanoff, 'Breaking the waves in science studies: comment on H.M. Collind and R. Evans "The Third Wave of Science Studies'" (2003) 33 Social Studies of Science 389-400.
24. Ibid. at p. 398.
25. A. Hope, 'Resource allocation decision-making: reasons and process', UK Clinical Ethics Network 5th Annual Conference, May 2005.
26. Coulter and Ham supra n. 15 passim.
27. Infra at nn. 33-48.
28. Supra n. 15 at p. 164.
29. S. Hurst, 'The views of primary care physicians on ethical issues in resource allocation: a European Comparison' UK Clinical Ethics Network 5th Annual Conference, 2005. There is an expectation that Foundation Trusts will attempt to reach 'hard to reach groups': Department of Health (2002) A Guide to Foundation Trust passim.
30. Syrett supra n. 16.
31. C. Newdick, Who Should We Treat? Rights, Rationing and Resources in the NHS (2005) (Oxford: Oxford University Press) at pp. 42-3.
32. Ibid. at pp. 211-20.
33. Ibid.
34. Healthcare Commission, Annual Report, 2005.
35. http://www.timesonline.co.uk/tol/comment/columnists/alice_miles/ article2388130.ece
36. Ibid.
37. W. Edgar, 'Rationing Health Care in New Zealand - How the Public Has a Say' in Coulter and Ham, supra n. 15 shows that public participation in the bigger health questions is feasible even within a restricted health budget.
38. Carnegie supra n. 3 at p. 2.
39. D. Koller '"Making a Difference": Youth Participation in Education and Health Care' presentation at the University of Sheffield, Centre for the Study of Childhood and Youth: 'Childhood and Youth: Choice and Participation International Conference, 2006;
40. see, also, J. Cherrill, H. Hudson, C. Cocking, V. Unson, L. Franck, J. McIntyre and I. Choonara, 'Clinical trials: the viewpoint of children' (2007) 92, Archives of Diseases in Childhood, 712-3 where the authors cite evidence of children's willingness to behave in altruistically in relation to research.
41. J.M. Davis and N. Watson, 'Disabled children's rights in everyday life: problematising notions of competency and promotion self-empowerment' (2000) 8 International Journal of Children's Rights 211-228.
42. M. Borland, A. Laybourn, M. Hill and J. Brown, Middle Childhood. (London: Jessica Kingsley, 1998).
43. Supra at. n. 37.
44. Supra n. 5 at pp. 6-7.
45. M. Chesney, L. Lindeke, L. Johnson, A. Jukkala and S. Lynch, 'Comparison of child and parent satisfaction ratings of ambulatory pediatric subspecialty care' (2005) 19(4) Journal of Pediatric Health Care 221-9.
46. K. Curtis, K. Liabo, H. Roberts and M. Barker et al, 'Consulted but not heard: a qualitative study of young people's views of their local health service.' (2004) 7(2) Health Expectations 149-156.
47. E. Elliott and A. Watson, 'But the doctors aren't your mum' (1997) 30 Health Matters 8-9.
48. J.A. Meade, M.A. Lumley and R.J. Casey, 'Stress, emotional skill and illnesses in children: The importance of distinguishing between children's and parents' report of illness' (2001) 42(3) Journal of Psychology and Psychiatry 405-12, Chesney supra n. 42
49. and B. Percy-Smith, D. Burns, S. Weil and D. Walsh (2003) Mind the Gap: Healthy futures for young people in Hounslow, University of the West of England and Hounslow Community Health Council, respectively.
50. Supra n. 5.
51. L. Piron, 'Rights Based Approaches and Bilateral Aid Agencies: More than a Metaphor?' (2005) 36(1) IDS Bulletin, 19.
52. J. Tobin, 'Beyond the Supermarket Shelf: Using a Rights Based Approach to Address Children's Health Needs' 14 (2006) The International Journal of Children's Rights 275-306.
53. Infra n. 64-76.
54. See, for example, Department of Health (2005) Creating a patient-led NHS: Delivering the NHS Improvement Plan.
55. Infra at nn. 100-120.
56. B. Badham, 'Participation - for a Change: Disabled Young People Lead the Way' (2004) 18 Children and Society 143-154.
57. C. Eiser, 'Changes in understanding of illness as the child grows' (1985) 60 Archives of Disease in Childhood 489-492;
58. D. Fielding and A. Duff, 'Compliance with treatment protocol: interventions for children with chronic illness' 80 Archives of Disease in Childhood 196-200;
59. P. Alderson and J. Montgomery, 'What about me?' (1996) Health Service Journal 22-24.
60. A. James and A.L. James, Constructing Childhood: Theory, Policy and Social Practice (Basingstoke: Palgrave: Macmillan, 2004).
61. Supra n. 6.
62. Supra n. 12.
63. J. Feinberg, 'The Child's Right to an Open Future' Reprinted in J. Feinberg, Freedom and Fulfillment: Philosophical Essays (Princeton, Princeton University Press, 1992) at pp. 76-98.
64. It is worth noting that Article 23(1) of the UNCRC, discussed infra at n. 68 includes a recognition that a mentally or physically disabled child has the right to have their active participation in the community facilitated.
65. Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402.
66. Re R (A Minor) (Wardship: Consent to Medical Treatment) [1991] 4 All ER 177, CA
67. and Re W (A Minor) (Wardship: Consent to Medical Treatment) [1992] 4 All ER 627, CA.
68. Governors in Foundation Trusts contribute to the setting of strategy in conjunction with boards of directors who take account of views expressed but make the final decisions. Dissatisfaction with any decisions taken may mean removal of non-executive directors by governors and, in practice, any cuts in services would require the sanction of Monitor. Foundation Trusts are discussed in more detail infra at n. 123-142.
69. Supra at n. 6.
70. For a further discussion of how this argument runs in relation to research see J. Harris and S. Woods 'What are the responsibilities of the individual when participating in medical research? in: L. Doyal and J. Tobias (eds), Informed Consent in Medical Research. (London: BMJ Books, 2000) 286-292.
71. Discussed supra n. 57 as an example.
72. Article 3.
73. Article 4.
74. UN Committee on the Rights of the Child (2002) Concluding Observations of the Committee on the Rights of the Child: United Kingdom of Great Britain and Northern Ireland http://www.unhchr.ch/html/menu2/6/crc/doc/past.htm;
75. Joint Committee on Human Rights, House of Lords/House of Commons, Westminster, 2003. The Government's Response to the Committee's Tenth Report of Session 2002-03 on the UN Convention on the Rights of the Child. Eighteenth Report of Session 2002-03. HL Paper 187/HC 1279;
76. Children's Rights Alliance for England, 2003. Convention on the Rights of the Child: Review of UK Government Action on 2003 Concluding Observations of the UN Committee on the Rights of the Child: London.
77. Author's emphasis.
78. Supra n. 52.
79. Every Child Matters op. cit. at n. 2 establishes being healthy, staying safe, enjoying and achieving, making a positive contribution and securing economic well-being as important policy outcomes.
80. Ibid.
81. S. 2(11) Children Act 2004.
82. S. 2(3)(d).
83. S. 2(3)(e).
84. Discussed infra at n. 141.
85. J. Fortin, Children's Rights and the Developing Law, 2nd. ed., (London, Lexis-Nexis, 2003), Chapter 2.
86. Ibid and J. Fortin, 'Accommodating Children's Rights in a Post Human Rights Act Era' (2006) 69(3) Modern Law Review 299-326.
87. DoH, (2001): consent forms and accompanying documentation and Royal College of Paediatrics and Child Health (2000) Advocating for Children.
88. Mabon v Mabon and others [2005] 3 W.L.R. 460.
89. Ibid at pp. 462 and 466-7.
90. J. Fortin (2006) supra n. 63.
91. Re Roddy (a child) (identification: restrictions on Publication) [2004] 2 FLR 949.
92. See, for example, G. Brook, 'Children's competency to consent: a framework for practice' (2000) 12 Paediatric Nursing No. 5, 31 in which she discusses the framework of practice established at the Liver Unit, Birmingham Children's Hospital NHS Trust which allows the child every opportunity to engage in the process of deciding their optimum treatment, at all stages, decisions big and small, with all the disciplines involved in their care in accordance with their levels of competence.
93. Personal communication from J. Wales, Consultant Paediatrician, Sheffield Children's NHS Foundation Trust.
94. Medical law cases already demonstrate how a number of Articles will be employed in an action and how the court then proceeds to engage in a balancing of these competing claims e.g. NHS Trust v D & Others [2000] 2 FLR 677.
95. J. Velu, "The European Convention on Human Rights and Right to Respect for Private Life, the Home and Communications" in A.H. Robertson (ed.), Privacy and Human Rights (Manchester, Manchester University Press, 1973) 12-128 at p. 92.
96. Andre Deklerek v Belgium. Application No. 8307/78 DR21, 116.
97. Botta v Italy (1998) 26 EHRR 241.
98. Ibid. at para. 32.
99. [2003] EWHC 167 (Admin).
100. Ibid. at paras. 85-99 in particular.
101. Kant (1948) Groundwork of the Metaphysics of Morals: Translated by H.J. Paton as The Moral Law. (London: Routledge, 1948), at pp. 83-84: 'Act only on that maxim through which you can at the same time will that it should become a universal law.'
102. D. Beyleveld and R. Brownsword, Human Dignity in Bioethics and Biolaw (Oxford: Oxford University Press, 2001) particularly Ch. 2.
103. Ibid.
104. The Human Rights Act: Changing Lives, British Institute for Human Rights, 20 April, 2007.
105. J. Williams, 'Incorporating children's rights: the divergence in law and policy' (2007) 27(2) Legal Studies 261-287. It is worth noting that the Employment Equality (Age) Regulations 2006 could also be used to strengthen legal claims made even though it is generally thought that these will be prayed in aid of the older generation.
106. Supra n. 54 passim.
107. National Children's Bureau (2005) Consultation with Young People The Green Paper - Youth Matters (A Report for the Office of the Children's Commissioner).
108. Supra n. 5.
109. http://www.ycni.org/downloads/publications/takingtheinitiative.pdf
110. R. Hart, From Tokenism to Citizenship (Florence, UNICEF Innocenti Research Centre, 1992).
111. http://cypi.carnegieuktrust.org.uk/cypi/news_and_events?from=14
112. Supra n. 37.
113. Supra n. 2.
114. Carnegie United Kingdom Trust op. cit. n.3 at p. 2.
115. Carnegie United Kingdom Trust (2004): Taking the initiative.
116. J. Pinkerton, 'Children's participation in the Policy Process: Some Thoughts on Policy Evaluation Based on the Irish National Children's Strategy' (2004) 18 Children and Society 119-30.
117. R. Sinclair,'Participation in Practice: Making It Meaningful, Effective and Sustainable' (2004) 19 Children and Society 106-118.
118. Supra n. 52.
119. Supra n. 2.
120. DfES and the DoH (2005): Youth Matters Green Paper.
121. Russell Report (2005): http://www.russellcommission.org/report/index. html.
122. http://www.dfes.gov.uk/rsgateway/DB/RRP/u014969/index.shtml
123. Children's Commissioner, Annual Report 2005/06.
124. National Children's Bureau (2005): Young people on NCB's Board of management: an evaluation of the first three years.
125. Supra n. 6.
126. Charity Commission (2006): RSI - Trustee Recruitment, Selection and Induction passim (http://www.charitycommission.gov.uk).
127. http://www.charity-commission.gov.uk/supportingcharities/under18scc30.asp
128. The Welsh Youth Council and the Children and Young People's Assembly for Wales also known as the Welsh Youth Parliament): http://www.funkydragon.org
129. Sir Al Aynsley-Green, Children's Commissioner, Implementing the Children's Bill Conference, Royal Society of Medicine, 19 April 2006.
130. Supra n. 117.
131. Supra nn. 41-48.
132. Established by the Health and Social Care Act 2001.
133. Supra n. 29.
134. Department of Health (2002): Guide to Foundation Trusts, passim.
135. As Chairperson of the Sheffield Children's NHS Foundation Trust, the author was elected to the Foundation Trust Network Board (the Foundation Trusts' representative body) from 2005-6 where Information was canvassed from all Foundation Trusts providing children's services.
136. Supra. n. 125.
137. DoH (2000): Preface of the NHS Plan, Cm 4818-1.
138. Ibid.
139. Supra n. 125.
140. S.A. McNamee, 'The Consequences of visibility for children's participation' presentation at the 'Childhood and Youth: Choice and Participation' International Conference, supra n.36 .
141. R. Sinclair, 'Participation in Practice: Making It Meaningful, Effective and Sustainable' (2004) 19 Children and Society 106-118 .
142. Supra n. 125.
143. W.A. Maloney, G. Jordan and A.M. McLaughlan, 'Interest Groups and Public Policy: the Insider/Outsider Model Revisited' (1994) 14(1) Journal of Public Policy 17-38.
144. Supra n. 126.
145. Supra nn. 117-20.
146. Supra n. 10.
147. DfES (2004) supra n. 1; for example, Standard 3 on Child, Young Person and Family-centred Services at p. 87.
148. Supra nn. 71-74.
149. Supra n.10.
150. Supra n. 126.
151. Ibid.
152. Supra n. 126.