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After Bristol: the healthcare of young children and the law
Published online by Cambridge University Press: 02 January 2018
Abstract
This paper considers the written statements provided to the Bristol Inquiry by parents whose children underwent cardiac surgery at the Bristol Royal Infirmary between 1984 and 1995, seeking to learn from their experiences, opinions, feelings and expectations. The law regulating the relationship between healthcare professional, parent and child is considered in light of these accounts. The limitations of the existing law are such that a new legal framework is required which fosters the relationship between healthcare professional, parent and child, supporting them in the shared endeavour of caring for the child. Of central importance within this new framework would be recognition of each child as a distinct individual and of the expertise which parents can contribute to the care of their child.
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- Research Article
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- Copyright © Society of Legal Scholars 2003
References
1 The Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–1995: Learning from Bristol (hereafter the Kennedy Report) (Cm 5207(I), July 2001) Summary, para 22.
2 Kennedy Report, n 1 above, Section one, Conclusions, para 6.
3 Kennedy Report, n 1above, ch 13, para 8.
4 Summarised in J Bridgeman “‘Learning from Bristol”: Healthcare in the 21st Century’ (2002) 65 MLR 241. The government has responded to the recommendations:Department of Health Learning from Bristol: The Department of Health's Response to the Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–1995 (Cm 5363, January 2002), considered in J Bridgeman ‘The “patient at the centre”: the government response to the Bristol Inquiry Report’ (2002) 24 JSWFL 347.
4a & The Health and Social Care (Community Health and Standards Bill) 2003 proposes the transfer of the functions of the Commission for Health Improvement to a new regulatory body, the Commission for Healthcare Audit and Inspection.
5 National Health Service Reform and Health Care Professions Act 2002.
6 Kennedy Report, n 1 above, ch 22, para 9.
7 Kennedy Report, n 1 above, ch 2, para 31.
8 Including cases in which the court is asked to determine whether non-treatment is lawful: Re J [1990] 3 All ER 930; Re J [1992] 3 WLR 507; Re C (1998) 6 Med LR 99, or the best interests of the child: Re T [1997] 1 WLR 242; Re C (a child) (HIV testing) [2000] 2 WLR 270; ReA [2000] 3 FCR 577. C Wells ‘Whose Baby Is it?’ (1988) 15 J Law & Society 323 includes the views of some parents of handicapped children in a discussion of the legal and philosophical issues surrounding non-treatment.
9 Professor Sir Ian Kennedy Opening Statement, 27 October 1998; M Maclean ‘How does an Inquiry Inquire? A Brief Note on the Working Methods of the Bristol Royal Infirmary Inquiry’ (2001) 28 J Law & Society 590.
10 Including both the Final Report and the Interim Report, transcripts of oral evidence, witness statements, submissions, the Clinical Case Notes Report, Background papers, Expert Papers and reports of the seven seminars: http://www.bristol-inquiry.org.uk.
11 Including two couples where both parents gave separate statements in relation to the care of their child.
12 One of the mothers, Mollie Lloyd WIT 0212, was a foster mother who shared the care of Jack with his parents from the day he was discharged after birth until his death. In her statement she identifies the alienation she experienced because, unable to give consent, she felt that she was not informed of his condition or how surgery had gone despite feeling responsible for him and despite practically and emotionally caring for him.
13 Clare Steel WIT 0510, para 3. Ten of the statements were written with reference to a contemporaneous diary or notes.
14 Kennedy Report, n 1 above, ch 2, para 25.
15 This paper does not address the impact of organ retention without parental knowledge or consent considered in The Bristol Royal Infirmary Interim Report Removal and retention of human material (May 2000). See M Maclean ‘Doctors, parents and the law — organ retention after paediatric cardiac surgery at the Bristol Royal Infirmary’ (2001) 13 CFLQ 399; J K Mason and G T Laurie ‘Consent or Property? Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey’ (2001) 64 MLR 710. Margaret Brazier stresses the importance of recognising the value attached to the bodies of loved ones: ‘Retained organs: ethics and humanity’ (2002) 22 LS 550. Nor do I consider the important points made by parents about the way in which they and their child were treated after their child had died.
16 Amongst the evidence are statements from four children of their memories of receiving treatment: Sarah Baker WIT 0524 (who wrote an article for Heart South West magazine when she was 19); Paul Hawkins WIT 0130; John Hopla WIT 0559; and Leigh Prince WIT 0438.
17 S M Wolf ‘Shifting Paradigms in Bioethics and Health Law: The Rise of a New Pragmatism’ (1994) 20 Am J L and Med 395.
18 Wolf, n 17 above, at 408.
19 Wolf, n 17 above, at p 410.
20 Timothy Powell WIT 023 1, para 49.
21 Karen Meadows WIT 0415; Susan Perry WIT 0462.
22 Linda Thompson WIT 0017, para 45; Joanna Staples WIT 0503; Karen Meadows WIT 0415; Susan Perry WIT 0462.
23 Failure to do so can amount to ‘wilful neglect’ contrary to the Children and Young Persons Act 1933, 1(1)Google Scholar.
24 Re W (a minor) (medical treatment: court's jurisdiction) [1992 3 WLR 758.
25 Pearce v United Bristol Healthcare NHS Trust (1998) 48 BMLR 118.
26 J Conaghan ‘Tort Litigation in the Context of Intra-familial Abuse’ (1998) 61 MLR 132 at 161. Criminal law likewise is perceived as ‘paradigmatic confrontation between strangers’: C Wells ‘Whose Baby Is It?’ (1988) 15 J Law & Society 323.
27 Kennedy Report, n 1 above, ch 29, para 18
28 Ellen Sheridan WIT 0014, para 20.
29 Philippa Shipley WIT 0392, para 37.
30 Belinda House WIT 0025, para 20.
31 Jonathan Gibbons WIT 0142.
32 Stella Crookes WIT 0146, para 13.
33 Paul Bradley WIT 0229, para 33.
34 Christine Dymond WIT 0476, para 21.
35 Carla Gibbs WIT 0431; Janet Hawkins WIT 0130; Linda Thompson WIT 0017; Janet Skelton WIT 0394.
36 Marion Purvis WIT 0203, paras 17, 18.
37 Janet Hawkins WIT 0130, para 8.
38 Alderson, P Choosing for Children: Parents' Consent to Surgery (Oxford: Oxford University Press, 1990) p 116 Google Scholar.
39 Gail Booth WIT 0410.
40 Malcolm Curnow WIT 0004; Leonora Booth WIT 0250; Rosemary Riddette-Jones WIT 042 1.
41 Susan Richardson WIT 0145, para 17.
42 Karen Welby WIT 0517, para 8; Kenneth Darbyshire WIT 0125.
43 Alderson, n 38 above, p 116.
44 Susan Francombe WIT 0349, para 32.
45 Anthea Greenway WIT 0266.
46 Rowena Cutter WIT 0243 para 35.
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48 Tanya Davies WIT 0407; Fay Phillips WIT 0206; Brenda Rex WIT 0219; Rosemary Riddette-Jones WIT 0421.
49 Andrew Hall WIT 0172; Penelope Plackett WIT 0012; Sandra Rundle WIT 0275; Mary Thorn WIT 0187; Brenda Rex WIT 0219.
50 Patricia Eaton WIT 0463, para 23.
51 Bolam v Friern Hospital Management Committee [1957] 1 WLR 582; Bolithn v City and Hackney Health Authority. [1997] 4 All ER 771.
52 Belinda House WIT 0025.
53 Stella Crookes WIT 0146, para 15.
54 Jonathan Mallone WIT 0155, para 20.
55 Susan Jenkins WIT 0252, para 37.
56 Sharon Peacock WIT 0011, para 42.
57 Paul Bradley WIT 0229, para 98.
58 Paul Bradley WIT 0229, paras 99, 104.
59 P Alderson’ Consent to Children's Surgery and Intensive Medical Treatment (1990) 17 J Law & Society 52 at 56.
60 Mayall, B and Foster, M Child Health Care: Living with children, working for children (Oxford: Heinemann Nursing, 1989) p 18 Google Scholar.
61 Christine Dymond WIT 0476; Shirley Flook WIT 0237; Gail James WIT 0220; Jayne and Richard Leonard WIT 0367; Lorraine Pentecost WIT 0267; Lesley Smith WIT 0286; Jean Sullivan WIT 0016; Janice Wilcox WIT 0309.
62 Penelope Stokes WIT 0242.
63 Helen Rickard WIT 0177.
64 Angela Good WIT 0460.
65 Marie Hill WIT 0554.
66 Margaret Falcone WIT 0241; Kenneth Stribling WIT 0015.
67 Samantha Down WIT 0168, para 21.
68 Samantha Down WIT 0168, para 28.
69 Samantha Down WIT 0168, para 43.
70 Kenneth Darbyshire WIT 0125, p 10.
71 Linda Bascombe's daughter, Simone, suffered an allergic reaction during a catheterisation. She gave Simone Arnica to help her recovery from the trauma of a subsequent catheterisation and after surgery: Linda Bascombe WIT 0264, para 57. Linda Rudge's son, Danyele, suffered from vomiting. Gaviston was prescribed but she identified tap water as the cause and stopped the vomiting by using purified water. Danyele was taken off potassium and Frusamide after she modified his diet and gave him foods rich in potassium and apples and pears, which have a diuretic effect: Linda Rudge WIT 0340, para 14.
72 Jacqueline Rathbone WIT 0433; Kenneth Darbyshire WIT 0125.
73 John Sturdy WIT 0424, para 16.
74 Jennifer Bidgood WIT 0362; Lorraine Pentecost WIT 0267; para 14 : ‘I got the impression that I was getting in the way of the nurses and doctors. They were always telling me to go for a cuppa or for a walk.’
75 Brenda Rex WIT 0219.
76 Julie Johnson WIT 0176; John McLorinan WIT 0122.
77 Alison Thomas WIT 0029, para 59.
78 Justine Eastwood WIT 0022; Alison Havenhand WIT 0244; Janet Hopla WIT 0558; Jonathan Mallone WIT 0155.
79 Susan Warburton WIT 0416, para 15.
80 Lisa Silcox WIT 0363.
81 Janet Hopla WIT 0558.
82 Susan Robinson WIT 0464.
83 Linda Thompson WIT 0017, para 14.
84 William Hine WIT 0333, para 3 1.
85 John Sturdy WIT 0424; Josephine Brownhill WIT 0429; Patrick Samuel WIT 0249; Janet Stacey WIT 0471; Heather Sturman WIT 0166.
86 Penelope Plackett WIT 0012; Jennifer Manfield WIT 0007.
87 Linda Bascombe WIT 0264; Patrick Samuel WIT 0249; Caroline Downing WIT 0570 was told that the operation had been a complete success but Sammy suffers from mild cerebral palsy as a consequence of her brain being deprived of oxygen at some time, which her mother says she will ‘always wonder whether the treatment that Sammy received at Bristol caused her condition’.
88 Anna Rizza WIT 0013, para 33.
89 Patrick Samuel WIT 0249.
90 Margaret Falcone WIT 024 I, paras 35, 4 1.
91 Christine Dymond WIT 0476, para 44.
92 Christine Dymond WIT 0476, para 40.
93 Christine Dymond WIT 0476, paras 46.47.
94 Jennifer Manfield WIT 0007; Caroline Anne Downing WIT 0570; Helen Sadler WIT 0287.
95 P Alderson ‘Researching Children's Right to Integrity’ in Mayall, B (ed) Children's Childhoods: Observed and Experienced (London: Falmer Press, 1994) p 60 Google Scholar.
96 Christine Kendall WIT 0418, paras 56,68.
97 John McLorinan WIT 0122, para 24.
98 Marie Hill WIT 0554, para 32.
99 Carol Kift WIT 0461, para 17.
100 Tracey Clarke WIT 0003; Lesley Smith WIT 0286.
101 Brenda Spicer WIT 0253, para 35.
102 Jean Sullivan WIT 0016, para 36.
103 Joanne Hill WIT 0432; Eileen Martyr WIT 0174; Michaela Willis WIT 0221.
104 Kathleen Tilley WIT 0230; Janice Wilcox WIT 0509;Anne Wingfield WIT 0518.
105 Erica Pottage WIT 0260, para 10.
106 Clare Steel WIT 05 10, paras 34, 39.
107 Leonard Jacobs WIT 0553.
108 Stephen Willis WIT 0285; Jacqueline Witts WIT 0295.
109 Anthea Greenaway WIT 0266, para 31.
110 Philippa Davies WIT 0156, para 24.
111 Karen Meadows WIT 0415, para 39.
112 Simon Ford WIT 0371; Michael Parsons WIT 0010; Sharon Peacock WIT 0011; Jennifer Penfold WIT 0564; Jacqui Pike WIT 0372; Alison Porter WIT 0188; Helen Sadler WIT 0287; Lisa Silcox WIT 0363; Clare Steel WIT 0510;Rosemary Walker WIT 0458; Clive Williams WIT 0167; Stephen Willis WIT 0285.
113 Rowena Cutter WIT 0243, para 38.
114 Amanda Boyland WIT 0232; Malcolm Curnow WIT 0004; Timothy Davies WIT 0160.
115 Lesley Smith WIT 0286, para 50.
116 Linda Burton WIT 0001.
117 Louise Jackson WIT 0405, para 68.
118 Jennifer Turvey WIT 0391: ‘I feel that I have been wilfully deceived. The decision to let Kate undergo the operation in Bristol was a terrible one. I feel utterly stupid for believing all I was told. I also feel that I have let Kate down by believing these people.’
119 Erica Pottage WIT 0260; Rosemary Walker WIT 0458.
120 Jennifer Turvey WIT 0391.
121 Malcolm Curnow WIT 0004.
122 Mary Hams WIT 0290, para 48: ‘We trusted Mr Wisheart, and I feel let down and betrayed’; Susan Perry WIT 0462.
123 West, R Curing for Justice (New York and London: New York University Press, 1997 Google Scholar).
124 West, n 123 above, p 149. The nominal sum of £10,000 ‘bereavement’ damages payable to parents of a deceased child under s 1A of the Fatal Accidents Act 1976 is not an attempt to reflect the emotional cost of the death of a child.
125 West, n 123 above, p 151.
126 West, n 123 above, p 176.
127 M Jones’ Informed Consent and Other Fairy Stories' (1999) 7 Med LR 103.
128 Morgan, D Issues in Medical Law (London: Cavendish Publishing Ltd, 2001) p 4 Google Scholar, citing Gillick v West Norfolk & Wisbech AHA [1985] 3 All ER 402; Airedale NHS Trust v Bland [1993] 1 All ER 82 1; and Re A [2000] 3 FCR 577 in relation to criminal law, the impact upon the declaratory jurisdiction; and R v Cambridge DHA. exp B [1995] 2 All ER 129 on administrative law.
129 M Brazier and N Glover’ Does Medical Law Have a Future? in Hayton, D (ed) Law's Future(s): British Legal Developments in the 21st Century (Oxford and Portland, Oregon: Hart, 2000) p 379 Google Scholar.
130 Alderson, n 38 above, p 224.
131 Care, G Clement, Autonomy, and Justice: Feminism and the Ethic of Care (Boulder Colorado and Oxford: Westview Press, 1996) p 90 Google Scholar; Alderson, n 59 above, at 64.
132 Wolf, n 17 above. P Alderson and Montgomery, J Health care choices: making decisions with children (London: IPPR, 1996 Google Scholar) argue for reform of the law through legislation and a code of practice which promotes good practice and is based upon the reality of children's lives as opposed to ideas about childhood.
133 Brazier and Glover, n 129 above, p 380.
134 J Montgomery ‘Time for a Paradigm Shift? Medical Law in Transition’ (2000) 53 CLP 363 at 406.
135 Department of Health, n 4 above, ch 10, para 2.
136 Maclean, n 9 above, at 593.
137 The Kennedy Report, n 1 above, ch 28, para 18.