Law and Ethics Update – Autumn 2022

AdsFoundation Legal Update Autumn 2022

The information in this update, as across the whole of the AdsFoundation website, is for education and training purposes only. If needed legal advice on a specific case should be sought from a suitably experienced and qualified lawyer. There is information on how to identify a suitable lawyer at the bottom of our resources for Patients and Carers page.

If you would like to go on to a mailing list to receive this quarterly update, please contact the AdsFoundation using the Contact Us tab above.

Free Legal Advice Clinic. The Adam Bojelian Foundation CIC now provides a free to access legal advice clinic.  The clinic is provided as part of the Law Works Clinics network.

Preliminary advice is provided by appointment by an experienced advisor, with the aim of making individuals aware of the law and ethics related to their issue of concern. We do not take on cases, but if you need further advice and assistance than we are able to provide in the 45-minute session, we sign post you on to third party organisations.

Advice is given on matters of healthcare law and ethics. We also provide preliminary advice on employment law to those working in health and social care or those whose employment law concerns relate to their health or that of someone they care for.

PLEASE NOTE ADVICE CAN ONLY BE GIVEN AT A CLINIC ON MATTERS OF HEALTH AND CARE LAW & ETHICS & HEALTH & CARE RELATED EMPLOYMENT LAW. CLINIC APPOINTMENTS SHOULD BE BOOKED USING THE LINK BELOW. ADVICE CAN NOT BE GIVEN BY EMAIL OR VIA SOCIAL MEDIA.

More information is available on Free Legal Clinic Page of the AdsFoundation website.

New Statutes, White Papers, Bills, Policy Papers Parliamentary & Government Matters

This guide from the UK Parliament explains the stages Bills go through to become law. You may find it useful when reading this section of this legal update.

We include Bills we think you will find of particular interest which have progressed past their Second Reading in the House of Commons or Lords. Except in exceptional circumstances (see British Bill of Rights below), we do not include Bills which have only had a First Reading as many will never become law.  You can however see all Bills progressing through Parliament on the Parliament website.

Westminster

British Bill of Rights

This Bill which featured in our June 2022 Legal and Ethics Update has now been shelved by new Prime Minister Liz Truss’ government. Bill of Rights: Liz Truss shelves plans to reform human rights law – BBC News

At the time of writing the government has indicated that it will bring in changes in other ways, but how and when is unclear.

Clean Air (Human Rights) Bill [HL]

This Private Members’ Bill was introduced in the House of Lords by Green Party Peer Baroness Jones of Moulescomb.

The Bill which is currently in the Committee stage in the House of Lords aims to:

• establish a right to breathe clean air;
• require the Secretary of State to achieve and maintain clean air in England and Wales;
• involve the UK Health Security Agency in setting and reviewing pollutants and their limits;
• enhance the powers and duties of various agencies in relation to air pollution;
• establish a Citizens’ Commission for Clean Air with powers to intervene in legal proceedings; and to
• require the Secretary of State and other authorities to apply environmental principles in carrying out their duties under the Act.

House of Lords library briefing

Healthy Homes Bill [HL]

This Bill was introduced into the House of Lords by Crossbench (not attached to any political party) Peer Lord Crisp.  The Bill which is currently at the Committee stage in the House of Lords, aims to establish healthy homes and neighbourhoods; to set out principles defining what these are and to create an office of the Healthy Homes Commissioner.

House of Lords library briefing

Neonatal Care (Leave and Pay) Bill

This is a House of Commons Private Members Bill introduced by Stuart C McDonald MP (Scottish National Party). The Bill which has reached the Report Stage in the House of Commons aims to make provision for leave and pay for employees whose babies are receiving neonatal care.

House of Commons Library briefing

Social Security (Special Rules for End of Life) Bill [HL]

This Department of Work and Pensions Bill has completed its passage through the House of Lords and reached its Third Reading in the House of Commons. If enacted the new Act will allow for certain social security rules which currently apply when an individual has a life expectancy of 6 months or less, to instead apply when an individual has a life expectancy of 12 months or less.

Briefing paper for House of Commons

Scottish Parliament

This link from the Scottish Parliament explains the stages a Bill must go through to become law.

Disabled Children and Young People (Transition to Adulthood) (Scotland) Bill

This Bill has been reintroduced by Pam Duncan-Glancy MSP (Labour) after it fell at the end of the last session of Parliament when Parliament was dissolved.

The Bill is currently at Stage 1 where the general principles of the Bill are discussed.

The Bill aims to require:

• Scottish Government to introduce a strategy explaining how they will improve opportunities for disabled children and young people;
• a Scottish Government minister responsible for improving opportunities for disabled children and young people moving into adulthood; and
• local authorities to have plans for each disabled child and young person as they move into adulthood.

Gender Recognition Reform (Scotland) Bill

This Bill, currently at Stage 1 in the Scottish Parliament process, aims to amend the Gender Recognition Act 2004 as it applies in Scotland in respect of the process of obtaining a gender recognition certificate (GRC).  A GRC is a certificate legally recognising a person’s acquired gender, different from the gender they acquired at birth.

The Bill sets out:

• who can apply for a GRC;
• how to apply;
• the grounds on which the application will be granted;
• different types of GRC;
• appeals of decisions; and
• revocation of a GRC.

Welsh Parliament / Senedd Cymru

Guide to the stages of legislation in the Welsh Parliament

Social Partnership and Public Procurement (Wales) Bill

This Welsh Government Bill, which is at Stage 1 in the Welsh Parliament legislative process, aims include to:

• establish a Social Partnership Council;
• place a statutory duty on certain public bodies including local authorities; local health boards; Public Health Wales and Velindre Cancer Centre to seek consensus or compromise with recognise trade unions or staff representatives when setting their well-being objectives and delivering on those objectives under the Well-being of Future Generations (Wales) Act 2015 (WFGA);
• place a statutory duty on Welsh Ministers to consult with social partners, employers and work representatives through the Social Partnership Council, when delivering on their well-being objectives under the WFGA; and
• place a duty on the public bodies to consider socially responsible public procurement.

Explanatory Memorandum

Policy Papers, Committee Reports & Government Guidance

Westminster

Draft Mental Health Bill 2022

The Department of Health and Social Care and Ministry of Justice published a draft Mental Health Bill for pre-legislative scrutiny with the aim of modernising the Mental Health Act 1983.

The draft legislation is intended to give effect to the findings of Sir Simon Wessely’s  independent review in 2018 and the government’s white paper Reforming the Mental Health Act in 2021.

Explanatory Notes

A House of Commons and House of Lords Joint Committee was established on 19th July 2022. This will consider the draft bill and report by 16th December 2022.  The Committee issued a Call For Evidence which closed on 16th September.

House of Commons, Health and Social Care Committee: Expert Panel: evaluation of Government’s commitments in the area of health and social care workforce in England (19th July 2022)

The Committee commissioned an Expert Panel who assessed the government’s performance using ratings in the style used by bodies such as the Care Quality Commission.

House of Commons, Health and Social Care Committee: Report on The impact of body image on mental and physical health (19th July 2022)

In this Report the Committee addressed:

• What drives poor body image and who does it impact?
• Impact of body image on health and lifestyle.
• Body image and experience of healthcare services.
• The balance of tackling obesity and reducing weight stigma.
• Non-surgical cosmetic procedures.

House of Commons, Health and Social Care Committee: Report on Workforce: recruitment training and retention in health and social care (20th July 2022)

The Committee’s findings and recommendations are wide ranging.

Recommendations include the reintroduction of a bursary scheme for nursing and midwifery students, with those who are part of the scheme being offered 3 years guaranteed employment following graduation.

The Committee also criticises the government for a lack of transparency of current and future staff planning and concludes that the government’s target of recruiting 50,000 nurses is having no meaningful impact on nursing shortages.

Scottish Government

Guidance: Adult Support and Protection (Scotland) Act 2007: guidance for General Practice (28th July 2022)

This revised guidance reflects changes in policy, practice, and legislation. It provides information and detail to support the practical application of the 2007 Act for GPs and staff in General Practice.

Code of Practice: Adult Support and Protection (Scotland) Act 2007

This Code of Practice likewise reflects changes in policy, practice, and legislation since the enactment of the 2007 Act .

Welsh Government

Guidance: Mental health crisis care agreement: action plan 2019 to 2022 (updated 20th September 2022)

Guidance on how to support people in a mental health crisis.

Policy & Strategy:Six goals for urgent and emergency care: policy handbook for 2021 to 2026 (20th September 2022)

This document sets out the Welsh government’s priorities for urgent and emergency care, with the aim of ensuring patients get the right care in the right place, first time.

CASE LAW

We include relevant key European Court of Human Rights, Supreme Court and Court of Appeal cases, plus cases from the lower courts which are likely to be of particular interest.

This quarter we focus in detail on the heart-breaking case of 12-year-old Archie Battersbee which was high profile over the summer. We explain why there were repeated applications to court; the basis of the Courts’ decisions; the involvement of the European Court of Human Rights and the Committee of the United Nations Committee on the Rights of Persons with Disabilities.

Hollie Dance & Anor -v- Barts Health NHS Trust & Anor

Basic Facts:

On 7th April 2022 Archie’s mother Hollie Dance discovered Archie at home unconscious with a ligature around his neck. Ms Dance assumed Archie had been taking part in a tick-tock challenge which had gone badly wrong. Archie was taken to his local hospital with a traumatic brain injury caused by being deprived of oxygen. Archie was transferred to paediatric intensive care at the Royal London Hospital, managed by Barts Health NHS Trust (the Trust).  The Court of Appeal judgment of 6th July 2022 (see below) states that Archie was in a coma, unable to communicate, required mechanical ventilation, but was not in pain.

By the 15th April the treating team believed Archie’s clinical presentation showed no realistic prospect for brain stem function. The Trust obtained second opinions from paediatric intensivists and neurologists, who agreed with the treating team that there was no possibility of Archie recovering. Members of the treating team recommended brain stem testing or further CT head and angiogram, but were of the opinion that withdrawing treatment was in Archie’s best interests.  Archie’s parents Hollie Dance and Paul Battersbee felt unable to agree to the brain stem testing, they were particularly concerned about the risk to Archie of undergoing the test.

On 26th April the Trust issued proceedings in the Family Division of the High Court for a Court Order that it was lawful for Archie to undergo brain stem testing and a declaration that it was lawful to withdraw Archie’s mechanical ventilation and life sustaining treatment.  Archie was joined as a party on 28th April, with a Children’s Guardian representing him.

A series of High Court and Court of Appeal hearings followed. Archie’s parents also made unsuccessful applications to the Supreme Court (the highest UK appeal court); the European Court of Human Rights and the Committee of the United Nations Convention on the Rights of Persons with Disabilities.  The ultimate decision was that it was in Archie’s best interests for his life sustaining treatment to be withdrawn. Archie sadly died at the Royal London Hospital on 6th August 2022, following the withdrawal of his life sustaining treatment.

The decision that it was in Archie’s best interests was based on well-established law, indeed the first application to the Court of Appeal (judgment 6th July 2022, see below) arose because of Archie’s parents’ concern that the original high court judge hearing the case Mrs Justice Arbuthnot, did not base her decision following an assessment of Archie’s best interests but instead granted the Trust permission to withdraw life sustaining treatment on the basis that irreversible cessation of brain stem function had, it was argued, been conclusively established on 31st May. This was despite the fact the treating team and independent experts had been unable to conduct a brain stem function test on Archie. Justice Arbuthnot did say at paragraph 196 of her judgment of 13th June 2022, that had she not made the declaration of death, she would have found it was not in Archie’s best interests to continue medical treatment, but did not go on to conduct an assessment of Archie’s best interests as she should have done.

The Court of Appeal was critical of Justice Arbuthnot’s approach, stating at paragraph 35 of their judgment of 6th July 2022:

No authority has been produced in which previous judges have declared that death has occurred in an individual whose bodily functioning is being mechanically maintained by a ventilator and where death is said to be established on evidence other than testing undertaken in accordance with the Code*, or where the judge does not have any medical witness who has diagnosed death. The course that the judge was invited to follow in the present case was, it seems, unprecedented.

* the Code is the Code of practice for diagnosis and confirmation of death

The Court of Appeal judgment makes clear that Justice Arbuthnot took this erroneous course of action after the Guardian acting for Archie became concerned about her position. If Archie was already dead, she had no standing to act for Archie or give her views as to his best interests. On the Guardian’s instructions the senior barrister representing her persuaded the Trust that it should continue to pursue its application for a declaration of death and Justice Arbuthnot followed this lead.

The Court of Appeal cautioned judges in future similar cases, stating at paragraph 37 of its judgment:

We do, however, strongly caution judges in future cases of this kind from being drawn into attempting to declare death on a basis outside the Code where none of the medical witnesses has themselves made a diagnosis of death.

The Court of Appeal referred the case back to the High Court under a new judge Mr Justice Hayden, who correctly conducted an assessment of Archie’s best interests.

High Court Assessment of Archie’s Best Interests (Judgment 15th July 2022)

Section 1 of the Children Act 1989 requires that a Court’s paramount consideration must be a child’s best interests.

In paragraph two of his judgment, Mr Justice Hayden stated

Law and good medical practice will rarely if ever diverge.

He judged that the approach of Mrs Justice Arbuthnot (see above) was not only wrong in law, but also in his view wrong in medicine. Rather than assuming as Justice Arbuthnot had done, that Archie had already died, Justice Hayden stressed that he was proceeding on the basis that Archie was alive. He stressed the focus should be on Archie and his best interests.

Justice Arbuthnot considered the clinical evidence in detail. This he judged showed catastrophic neurological injury. The unanimous medical evidence was that Archie had not and would not regain consciousness. He was continuing to deteriorate clinically. Eventually all his organs would fail and his heart would stop.  The professional consensus was that Archie was beyond pain, but the Judge held this also meant that he was beyond experiencing pleasure.  Justice Haydon acknowledged Archie’s mother’s belief that Archie was ‘still there’.

Justice Haydon rejected an argument put forward on behalf of Archie’s parents that the emotions of the nurses treating Archie should be ignored. Justice Haydon described the nurses’ emotions as:

part of that canvas, particularly when considering what weight should be afforded to respect for Archie’s dignity and autonomy (para 24)

In line with existing case law, Justice Hayden stressed that a best interests evaluation is not ‘solely a medical issue‘, stressing, at paragraph 25 the vital importance of putting the medical evidence in the context of Archie’s life, personality and wishes prior to his injury. The judgment goes on to consider (paras 26-31) the person Archie was.

Justice Hayden also considered in some depth the importance of protecting Archie’s dignity. In doing so, he recognises the similarity in the ways best interest assessments should be conducted for adults under the Mental Capacity Act 2005 and how children’s best interests should be assessed in keeping with the case law of the Court.

How a best interest determination should be made is summed up well in the quote Justice Hayden uses from the leading case of Aintree University Hospital NHS Trust v James [2013] UKSC 67:

“[39] The most that can be said, therefore, is that in considering
the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.
“[45] ……..The purpose of the best interests’ test is
to consider matters from the patient’s point of view. That is not
to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an
incapable patient’s wishes are. Even if it is possible to determine
what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament…… But insofar as it is possible to ascertain the patient’s wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being.” (per Baroness Hale).

In judging that it was in Archie’s best interests to his life sustaining medical treatment to be withdrawn, Justice Hayden put weight on the conclusions of the Guardian appointed to act for Archie in the legal proceedings:

She said this:
“I was impressed with the care that I observed Archie receive
from the nursing staff. I am pleased that Ms Dance reports her
relationship to be “brilliant” with them. I certainly observed this
brilliant relationship when I visited. Whilst I consider all those
who care for and treat Archie to be doing so with the greatest of
dignity and respect, I have to consider whether his life being
sustained indefinitely, in light of the medical evidence would be
dignified for Archie and in his best interests.

I have outlined the benefits that Archie’s family derive from his
life being supported in the way it is currently, however the
medical evidence finds that for Archie improvement is not
possible. Whilst receiving the highest level of love and care
Archie is unlikely to be able to benefit from it and his life is
characterised by intensive care with the many interventions and
techniques that involves. Furthermore, there is an ever-present
risk that Archie may experience a medical event requiring
recovery procedures, or that the ability to provide him with the
medical intervention his body needs is compromised. There is
unfortunately no treatment possible to reverse the damage that
has been caused to Archie’s brain following his awful accident.” (para 44).

Human Rights

In his judgment Justice Hayden made clear that the European Convention on Human Rights (ECHR) was relevant (engaged), in particularly Article 2, the right to life; Article 3, the right not to be subjected to inhumane treatment or torture and Article 8, the right to a family life.

The ECHR was made part of domestic law (incorporated into domestic law) by the Human Rights Act 1998 (HRA).  This means that complaints of breaches of Articles of the ECHR can be brought before a UK court. It also means that Courts have a duty to consider whether the ECHR has been breached.  Furthermore, irrespective of any legal action, under s6 HRA public bodies, including the NHS have a duty (known as the public sector duty) to act in accordance with the ECHR, in other words ensure they do not breach the ECHR irrespective of any complaint.

In contrast although the UK is a party to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), unlike the ECHR, none of the United Nations human rights treaties have currently been made part of domestic law by incorporation. This means that the UK Court does not have a duty to consider whether Articles of the UNCRPD have been breached.

On 28th July Archie’s parents approached the Committee of the UNCRPD on their own and Archie’s behalf, claiming breaches of the UNCRPD, including his right to life (Article 10) and right to equal recognition before the law as a disabled person (Article 12). This approach could be made as the UK is a party to the Optional Protocol allowing the Committee to consider individual cases from the UK. The next day the Committee asked the UK authorities to refrain from withdrawing life sustaining medical treatment whilst the Committee considered Archie’s case. The Trust indicated that unless a domestic court stayed (delayed) the withdrawing of life sustaining treatment, they would proceed in accordance with the order granted by the domestic court to withdraw life sustaining treatment on 1st August. On 1st August the Court of Appeal rejected Archie’s parents’ application for a stay whilst the Committee of the UNCRPD considered Archie’s case or at least until the Committee indicated how much time they would need.  The Court of Appeal refused this application as not being in Archie’s best interests as his clinical situation was continuing to deteriorate and because the UNCRPD is not part of domestic law. The Supreme Court, the UK’s highest appeal Court refused permission to appeal as there were no legal grounds for the appeal.

On 3rd August Archie’s parents applied on their own and Archie’s behalf to the European Court of Human Rights (ECtHR) for an interim measure under Rule 39 of the ECtHR’s rules, again asking for a delay in the withdrawal of life sustaining treatment.  Interim measures are urgent measures only granted by the ECtHR where there is an imminent risk of irreparable harm and only granted in exceptional circumstances.  Most cases concern the suspension of an expulsion from a country or an extradition.

Archie’s parents argued that the UK’s failure to honour the UNCRPD Committee’s request to delay withdrawing life sustaining treatment, breached Archie’s ECHR Article 2 (right to life) and Article 14 (right not to be discriminated against in relation to an Article of the ECHR) rights, among other ECHR rights.

The President of the ECtHR decided not to issue an interim measure and also that the application did not fulfil the ECtHR’s admissibility criteria. The President there decided that the Court would not interfere with the decision of the domestic court that it was in Archie’s best interests that his life sustaining treatment be withdrawn.

Links to Key Judgments

Court of Appeal

1^st August 2022

Hollie Dance & Anor. v Barts Health NHS Trust & Anor. – Find case law (nationalarchives.gov.uk)

25^th July 2022

Hollie Dance & Anor. v Barts Health NHS Trust & Anor. – Find case law (nationalarchives.gov.uk)

6^th July 2022

Barts Health NHS Trust v Hollie Dance & Ors. – Find case law (nationalarchives.gov.uk)

High Court

Mr Justice Hayden 15^th July 2022

Barts Health NHS Trust judgment (judiciary.uk)

Mrs Justice Arbuthnot 13^th June 2022

Archie Battersbee judgment (judiciary.uk)

Open Consultations and Inquiries

UK Government Consultations

Department of Health and Social Care: Call for evidence; Downs Syndrome Act 2022 guidance

EASY READ Version

The Department is seeking views on what should be included in the Downs Syndrome Act guidance.

Consultation closes 11.45pm on 8 November 2022

Department of Health and Social Care: Call for Evidence: Equity in medical devices: independent review

The independent review aims to understand how, why and where potential ethnic and other unfair biases may arise in the entire life cycle of a medical device. The Call for Evidence aims to collect existing data and evidence as well as information on ongoing data and evidence.

The department state that the Call is particularly aimed at those involved in the design, development, evaluation and use of medical devices.

Patients and the general public are also encourage to respond to the Call to share their views and insights.

Consultation closes 11.45pm on 6 October 2022

UK Health Security Agency: Consultation: Clostridioides difficile infection: guidance on management and treatment

This consultation seeks feed back on new guidance for the management and treatment of Clostridioides difficile infection.

Consultation closes 5pm on 14 October 2022

Scottish Government Consultations

Consultation: Equality Evidence Strategy 2023-25

Scottish Government are consulting to improve and strengthen Scotland’s equality evidence base, with the view to shaping Scotland’s new Equality Evidence Strategy.

Consultation closes 7 October 2o22

Welsh Government Consultations

Consultation: Draft action plan to end the abuse and neglect of older people in Wales

The Welsh Government are seeking views on whether its draft action plan addresses the major risk factors facing people who are at risk of abuse and neglect.

Consultation closes 17 October 2022

Consultation: Developing a national framework for social prescribing

The Welsh Government aim to develop a national framework which would set a common set of standards and ensure consistent delivery.

They aim through the Consultation to:

• develop a common understanding of the language used to describe social prescribing;
• agree a model of social prescribing for Wales;
• understand what is already happening across Wales, what is working well and what isn’t;
• identify what action can be taken on a once for Wales basis;
• help embed social prescribing services in areas where they either don’t exist or need to be developed further; and
• find out which technological solutions Wales need to develop.

Consultation closes 20 October 2022

Consultation: Draft substance misuse treatment framework and Standards for mental health services in prisons

Welsh Government are seeking views on its draft framework.  In particular:

• the provision of substance misuse and mental health treatment in prisons;
• standards in assessment and integrated care planning;
• promoting health and well-being for prisoners;
• continuity of services and treatment both in and out of prisons; and
• workforce development.

Consultation closes 14 October 2022

National Council for Health & Care Excellence (NICE) Consultations

You can use this LINK to access current NICE consultations, see individual closing dates for each consultation.

Our next Law and Ethics Update will be published in December 2022. If you would like it emailed directly to you please let us know using the CONTACT US tab above.

Please feel free to share this update with your colleagues and networks for education and training purposes.

We welcome your feedback on this and all our resources, including information of any additional resources we should include or any changes you think we should make to our existing resources. We would also love to hear if and how you use this update and whether you have responded to any of the consultations listed. Please use the CONTACT US tab above to share your thoughts with us. Thank you

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