The University of Southampton

Author: Isabelle Mitchell

The Alder Hey scandal

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I have always been interested in ethical problems; after completing an ethics and philosophy A level I knew I would be interested in the subjects covered in the ethics and law lecture. My mum works for NHS organ and tissue donation, specifically working to improve the way our organ donation system works. This includes the ethical implications that come hand in hand with organ donation. Due to this, I have always been fascinated by ethical issues regarding organ donation.

As soon as I heard about the Alder Hey organ scandal it instilled a great deal of emotion in me, due to the baffling concept of organ removal, retention, and disposal without consent. Especially as a key aspect of the UK’s current organ donation system is based on consent.

What was the Alder Hey scandal?

In 1999 it surfaced that the Alder Hey hospital in Liverpool had been removing various whole organs, hearts, and brains at necropsy from children, without the consent of parents1 . After the inquiry in January 2001, a singular pathologist named Dick van Velzen was charged with committing malpractice.

As outlined in the inquiry the pathologist removed around 850 organs during or after post-mortem and left them in jars, incorrectly processed and uncared for. Many of which were not histologically examined. 

‘systematically stripped of their organs’

Royal Liverpool Children’s Inquiry. Report. London: Stationery Office; 2001. www.rlcinquiry.org.uk/ (accessed 2 February 2001) [Google Scholar]

Reflecting on this information I realised the severity of the Alder Hey scandal. It is difficult to imagine how devastating it would’ve been for parents realising they were denied the opportunity to bury their children whole. For parents processing the unexplainable grief of losing a child, I could only feel pain thinking about how much more difficult the process was made because of the Alder Hey scandal.

What happened as a result of the Alder Hey scandel?

The Alder hey scandal came off the back of the BRI cardiac scandal. Due to the nature and timing of the public release the NHS and government were under a lot of pressure to make a change. The Alder Hey scandal caused a revision of the human tissue act of 19612. The revision claimed to remove any confusion between ‘lack of objection’ and ‘informed consent’ which was where the original confusion lay when collecting organs in the Alder Hey scandal. The department of health and royal college of pathologists should instruct all pathologists that written consent is needed to retain tissue samples and organs. Consent must be gained for each organ retained.

It may never be possible to remedy the pain and suffering of the families at Alder Hey; their legacy, however, must be that activities like those at Alder Hey never occur again.

Bauchner H, Vinci R. What have we learnt from the Alder Hey affair? That monitoring physicians’ performance is necessary to ensure good practice. BMJ. 2001 Feb 10;322(7282):309-10. doi: 10.1136/bmj.322.7282.309. PMID: 11159638; PMCID: PMC1119560.

The revision of this act also brought to light the lack of training for physicians, when talking to and gaining consent from family members. It is not known how many organs and tissue samples collected before the Alder Hey scandal was as a result of proper consent. This showed the need for change. When looking at laws and medical practice and as our technologies and advancements change our laws and practice should change along with them.

The alder hey scandal was specifically eye-opening to me due to my mum’s background in organ donation, along with my idealistic view of our healthcare system. The Alder Hey scandal definitely shook the nation, however I am hopeful that it helped us define consent regarding organ donation. As discussed in the journal, ‘what have we learned from the alder hey affair?’, this part of history will help prevent unethical practice. Teaching us to update medical laws, as we update medical technologies.

References

  1. Royal Liverpool Children’s Inquiry. Report. London: Stationery Office; 2001. www.rlcinquiry.org.uk/ (accessed 2 February 2001) [Google Scholar]
  2. Bauchner H, Vinci R. What have we learnt from the Alder Hey affair? That monitoring physicians’ performance is necessary to ensure good practice. BMJ. 2001 Feb 10;322(7282):309-10. doi: 10.1136/bmj.322.7282.309. PMID: 11159638; PMCID: PMC1119560.

Prosthetics in developing countries

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Following our lecture on prosthetics and orthotics, I became interested in the affordability of the new prosthetic technology in the UK and in developing countries. From the age of nine to sixteen I was a competitive swimmer, this lecture reminded me of a girl I swam with who had a below the knee amputation, she always struggled with her prosthetic limbs and swimming. This was mainly due to one factor; she could not afford the newest technology and the NHS would only cover certain costs. 

What is a prosthetic limb?

An artificial substitute for a missing part, such as an eye, limb, or tooth, used for functional or cosmetic reasons

medical dictionary

This prosthetic toe has been dated between 950 – 710 BC. It was composed of wood and leather

Prosthesis technology has been around since 950 BC, prosthetic limbs are used after a limb or body part can no longer be used due to incidents such as disease, trauma, or a medical condition present at birth. 

In recent years prosthetics are made from advanced plastic and carbon fibre. The leaps in our technology astounded me, but it left me thinking with increasing technology there must be an increase in price. After investigation I found that the NHS is improving significantly when it comes to accessibility and in November 2022 the new bionic arm became available through free healthcare this came as a shock as I previously had other ideas regarding the accessibility in the UK.

As I read around the subject further, I found that I was more interested in prosthetic limbs in developing countries especially after learning that the professor delivering our lectures on prosthetics is running an accessibility campaign. 

Approximately 40 million people have a need for a prosthetic leg in the developing world yet a mere 5% have prosthetic options. The newest technologies are expensive; I was astounded when I realised many people don’t have access to the most basic prosthetics! The citizens that have access may not even be able to afford the prosthetic limb available. I have come across an organisation called LIMBS they aim to develop new designs to allow people in developing countries to have access to prosthetics. They focus on rehabilitation processes amputees can go through which supports amputees mentally and physically. They call for social change to allow these countries to work through their emotional trauma whilst also providing high-quality, low-cost prosthetic limbs.

The LIMBS project is under the borgen project, which is a non-profit organisation. This provides a good source of information when researching prosthetics in developing countries and the real-life effects of their work.

Click on the picture to find out more.

What is Southampton university doing to help? 

Dr Alex Dickinson is currently leading a multidisciplinary team of health scientists and engineers to discover how we can use technology to help improve accessibility to prosthetic limbs in Cambodia. They are looking at the growing number of amputees and the countries inability to keep up with the high demand.  They have been researching into portable 3D Scanners and most importantly Dr Maggie Donavan-hall has been looking at what technologies will realistically meet their needs, culturally and socially. The key aspects I took away from reading about this research is the need to tailor prosthetics and orthotics to the country and the people, the prosthetics need to work well with what is already in place in that country. As well as this it made me think about how else portable and personalised prosthetics having would help communities. For example, it was explained that it would also help due to decreasing waiting times to see a clinician, the clinicians would be mobile meaning they can take these devices to the patients. This allows the patients to take less time off work. I think this is a big step as it means more members of the community can come forward to receive help as they won’t be scared about it affecting their jobs.

https://www.southampton.ac.uk/news/2019/01/a-step-change-in-prosthetics.page: Prosthetics in developing countries

Crochet

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I started crocheting in June 2022 after finishing my year one university exams. I wanted to find a way to entertain myself that didn’t involve staring at a phone or TV. I have since been tasked with making multiple hats,bags and teddies for family members. All of them not realising how long a crochet project actually takes to complete.

Since moving into my year two house at university i have convinced all 4 of my house mates to join the crocheting craze. In the last two years crocheting has taken over social media platforms such as TikTok and Instagram, with creators sharing their crochet patterns and new projects.

For new crocheters the easiest way to start is by doing a simple chain stitch, the aim of this is to get used to holding the wool and the crochet hook. Making it ideal for new crocheters.