Events at Alder Hey Children’s Hospital – By Elise Smeath
In the early to mid 1900s many institutions were collecting organs and tissues (Burton & Wells, 2001). This often was without consent or consent whereby parents felt rushed and without full knowledge of what would occur (Redfern, Keeling & Powell, 2001, p.18). As institutions such as Myrtle street children’s hospital closed Alder Hey acquired the organs and tissues and stored them (Redfern, Keeling & Powell, 2001, p.86). This also occurred with the institute of child health (ICH) which became a department at Alder Hey in 1986 (Redfern, Keeling & Powell, 2001, p.448). The practices of Dick van Velzen from 1988-1995 led to the mass accumulation of children’s organs from various sites (Redfern, Keeling & Powell, 2001, p. 130).
1948 – Paediatric hearts and lungs began to be collected mostly from patients who underwent heart surgery at Liverpool children’s hospital (Redfern, Keeling & Powell, 2001, p.89). Due to method of removal tongues and neck structure would be removed however not retained long term. (Redfern, Keeling & Powell, 2001, p. 89).This collection was moved when the ICH opened at Alder Hey (Redfern, Keeling & Powell, 2001, p. 448).
From 1955– 1992 ICH collected stillborn foetuses and other pre-viable foetuses from various hospitals with at one stage over 3,500 in the collection (Redfern, Keeling & Powell, 2001, p.100). Some of which were destroyed however 1564 remained after a census in the year 2000 (Redfern, Keeling & Powell, 2001, p.100)
1961- Human tissue act 1961 allowed for autopsies to occur as justified by the coroners (Redfern, Keeling & Powell, 2001, p.356). The organs and tissues could be used for “therapeutic purposes and purposes of medical education and research” (Redfern, Keeling & Powell, 2001, p.356).
1989- Investigation into the ICH foetal collection resulted in the Polkinghorne report which then required the mother to consent in writing to use a foetus or foetal material for research despite both the mother and foetus having “no rights in law” (Redfern, Keeling & Powell, 2001, p.102).
14th February 1988- Anatomy Regulation act is introduced which detailed specific requirements regarding possession of body parts after autopsy (Department of Health and Social Security, 1988)
1988- Coroners Act comes into place elucidating that coroners discretion determined whether a post-mortem needed to occur and no express consent was needed from the parents and that retaining organs was only to occur to determine the cause of death (Sheach Leith, 2007)
April 1988- Dick van Velzen becomes the chair of Fetal and infant pathology at Alder Hey and also is to work with Liverpool University on research (Redfern, Keeling & Powell, 2001, p. 449)
April 1988- Professor van Velzen had prohibited the destruction of both organs and tissues and began storing them en masse with the removal and retention of “every organ in every case” (Redfern, Keeling & Powell, 2001, p.155). His style of reporting also differed as he didn’t undertake histological tests rather he described macroscopic changes (Redfern, Keeling & Powell, 2001, p.156). Some hospitals sent foetuses and stillborns to the Professor under the presumption he would undertake and report on pathology however he just stored the sent material (Redfern, Keeling & Powell, 2001, p.157).
1989- Hearts retained at Myrtle street hospital are moved to ICH but van Velzen’s unit moves to Myrtle street (Redfern, Keeling & Powell, 2001, p.449)
June 1990- First complaint is made about Professor van Velzen from a parent whose child’s autopsy report was incomplete. (Redfern, Keeling & Powell, 2001, p.450 )
July 1991 – Due to van Velzen’s tedious reporting practices and refusal to delegate dictation of reports to others 240 fetus’ accumulate at Alder Hey (Redfern, Keeling & Powell, 2001, p.450).
1992 – Over this time van Velzen is told to work to complete autopsies and reports so that so many foetuses weren’t accumulated. van Velzen lies and says it has been completed despite only completing 5 autopsies and accompanying reports by the end of 1991 (Redfern, Keeling & Powell, 2001, p.176, 452). It was also noted that van Velzen was not completing his required clinical sessions (Carter, 2001).
1993- Professor van Velzen stops providing hearts to ICH for research (Redfern, Keeling & Powell, 2001, p.452).
21st December 1993 – Hilary Rowland begins as chief executive (Redfern, Keeling & Powell, 2001, p. 239).
December 1994 – van Velzen takes unsanctioned leave after he has been told to cease work for Alder Hey and only conduct research (Redfern, Keeling & Powell, 2001, p.455).
March 1995- van Velzen reveals to another staff member regarding the ICH collection of foetuses acknowledging he obtained no ethics approval or consent from parents which is in direct contravention of the polkinghorne report (Redfern, Keeling & Powell, 2001, p. 455).
December 1995 – Professor van Velzen tenders his resignation (Redfern, Keeling & Powell, 2001, p.456).
1996 – Helen Rickard requested details of daughter Samantha’s case regarding Heart surgery at Bristol Royal Infirmary and it was revealed that Samantha’s heart was taken and stored (Boseley, 2000)
September 7th 1999- During the Bristol Inquiry Robert Anderson told of Alder Hey’s collection of hearts (Hall, 2001). The Bristol inquiry was looking into high mortality rates as a result of paediatric cardiac surgery at Bristol Royal Infirmary and during this Robert Anderson also revealed lack of informed consent or knowledge of parents in regards to the retention of organs at Alder Hey (Redfern, Keeling & Powell, 2001; Dyer, 2001.) This then was reported in the media and families began to enquire on whether their child was affected and a cataloguing of organs began by October 1999 (Redfern, Keeling & Powell, 2001, p.457).
January 30 2001 –The Royal Liverpool Children’s Inquiry Report is released (Also known as the Redfern Report).
November 2001- Hilary Rowland is fired after it is deemed she was negligent in dealing with complaints and should ultimately have known what was going on (“Hospital boss sacked”, 2001).
2004 – Human Tissue act 2004 was put in place with the newly formed Human Tissue Authority to be the regulatory body (McGauran, 2016). The act solidified informed consent as being integral for the use of human material for various endeavours and to negate this is a criminal offence (McGauran, 2016).
References
Boseley, S. (2000). Arrogance of doctors led to organ scandal. Retrieved from https://www.theguardian.com/uk/2000/may/11/alderhey.sarahboseley
Burton, J., & Wells, M. (2001). The Alder Hey affair: implications for pathology practice. Journal Of Clinical Pathology, 54(11), 820-823.
Carter, H. (2001). Extent of organ stockpile at Alder Hey. Retrieved from https://www.theguardian.com/uk/2001/jan/31/alderhey.helencarter
Department of Health and Social Security. (1988). The Anatomy Regulations 1988(pp. 1-4). London: Department of Health and Social Security.
Dyer, C. (2001). Bristol inquiry : Bristol inquiry condemns hospital’s “club culture.” BMJ : British Medical Journal, 323(7306), 181.
Hall, D. (2001). Reflecting on Redfern: What can we learn from the Alder Hey story?. Archives Of Disease In Childhood, 84(6), 455-456.
Hospital boss sacked. (2001). Retrieved from https://www.theguardian.com/society/2001/nov/21/hospitals.nhsstaff
McGauran, A. (2016). Regulation of human tissue in the UK. The Lancet, 388(10050), e4-e5. doi: 10.1016/s0140-6736(16)31497-0
Redfern, M., Keeling, J., & Powell, E. (2001). The Royal Liverpool Children’s Inquiry Report (pp. 18,86,89,100,102,130,155-157,176,239,356,448-450,452,455-457). Norwich: The Stationary Office Limited.
Sheach Leith, V. (2007). Consent and nothing but consent? The organ retention scandal. Sociology Of Health & Illness, 29(7), 1023-1042.
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Alder Hey Scandal 
