Law & Ethics Update: Summer 2021
The information on this page, as across the whole of our website, is for education and training purposes only and should not be taken as ‘legal advice’. 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. 
Summer 2021 Update (as this is our first update, items from January 2021 are included)
New statutes, White Papers, bills & policy proposals
UK Government White Paper, proposals for a new Health and Social Care Bill, February 2021 (England)
Integration and Innovation: Working together to improve health and social care for all. Department of Health and Social Care, February 2021 ‘Integrated Care Systems’ (ICS’) are key to these new proposals. ICS are partnerships between organisations within a given English geographical area which co-ordinate and plan care across the area, with the aim of improving health and social care for all and in particular addressing inequalities. ICS are the successor to Sustainability and Transformation Plan (STP) areas, the original eight of which were established in 2017. In February 2018, by which time 44 STP areas had been established, it was announced that STPs would be renamed ICS. In January 2019 the NHS Long Term Plan announced that the whole of England would be covered by ICS, each with a single Clinical Commissioning Group. The White Paper states that the government’s aim is to ‘improve effective working between different parts of the health and care system’ with the aim of improving outcomes and addressing inequalities. Key proposals include:
- Placing ICS onto a statutory footing. At the moment the existence of ICS is voluntary rather than compulsory, which the government says make them dependent on goodwill and mutual co-operation.
- Removing barriers currently found in legislation which prevent organisations within an ICS from making joint decisions.
- Embedding accountability for ICS into existing health accountability systems.
- Ensuring ICS work in partnership with other local bodies, including local Health and Wellbeing Boards.
Additional issues include:
- Patient Choice
- Social Care
- Workforce Planning
- Additional Powers for the Secretary of State; and
- Public Health
The House of Commons Health and Social Care Committee, scrutnised the White Paper, including hearing evidence from experts. The published their Report, including formal minutes and written evidence on 14th May 2021. The NHS Confederation who represent NHS organisations have published their briefing on the White Paper in February 2021. The Kings Fund published their explanation of the White Paper in March 2021.
Accessing healthcare in the EU (UK) (January 2021)
Whilst perhaps academic for most people whilst travel is greatly restricted due to COVID-19, now that the UK has left the EU the regulations around UK citizens accessing healthcare within EU and some other European states has changed. Regulations also now vary depending which country a UK citizen is visiting and the purpose of the visit. The UK government website provides further details.
The United Nations Convention on the Rights of the Child (Incorporation) (Scotland) Bill was introduced to the Scottish Parliament in September 2020 and passed unanimously by Members of the Scottish Parliament on 16th March 2021. The Bill will commence six months after it receives Royal Assent.
Once law, the Act will make it unlawful for public authorities in Scotland to act incompatibly with the UNCRC and children and young people or their representatives will be able to bring actions in the Scottish Courts to enforce their UNCRC rights. Scottish Government will be required to report annually on how they are meeting their UNCRC obligations and duties and other Scottish public authorities (which include for example health boards) must do so every three years. Editors note: As a keen advocate of children and young people’s rights and having lived most of his life in Scotland, Adam would have celebrated this new law, please do so on his behalf!
The Framework has been developed as an outcome of the Welsh Government’s Improving Lives Programme. It aims to build knowledge, skills and competence across the workforce to reduce health inequalities for people with learning disabilities.
Administrative Changes:
The Department of Health and Social Care introduced new forms for the reporting on child deaths on 1st April 2021.
Case Law:
Court of Protection: Is it in the best interests of a 86 year old woman with dementia to have her COVID-19 vaccination when she strongly objects to medical interventions? 30th April 2021
SS v London Borough of Richmond Upon Thams & Anor [2021] EWCOP31
SS is a 86 year old woman living in a care home and has a diagnosis of dementia. She believes she is still living at home with her (long deceased) parents and needs to return to them and to get back to her work. She has contact with one relative, her cousin TB.
The application was part of wider Court of Protection proceedings concerning SS. The application was brought to the Court to decide whether it was in SS’s best interests to give her her COVID-19 vaccination. The Court heard that this would require restraint and sedation. SS had a history of increasing resistance to medical intervention.
The Court’s deliberations included consideration of the risk of COVID-19 to SS. The judge, the Hon Mr Justice Hayden, Vice President of the Court of Protection, also considered a suggestion from SS’s cousin TB that SS would be likely to accept the vaccination if she were told that her father (whom SS, due to her dementia, wrongly believed to be still alive ) had requested that SS have the vaccination.
After consideration of the law and facts the Judge held that it would not be in SS’s best interests to have her COVID-19 vaccination, as to trick her (by saying her father had asked that she have it) or restrain or sedate her, would lead to a break down in trust between SS and her care team, which needed to be maintained for SS’s well-being. The judge highlighted that SS would be looking to her carers for help whilst being sedated or restrained and they would be unable to act to help her, leading to the breakdown in trust.
This case illustrates well that best interest decisions are based on the individual circumstances of the patient and must consider the individual’s welfare widely, not just focus on clinical outcomes.
High Court, Queens Bench Division, Administrative Court: NHS trusts’ duties to involve services users in decisions about services during the COVID-19 pandemic. 16th April 2021
Dawson, R (on the application of) v United Lincolnshire Hospital NHS Trust [2021] EWHC 928 (Admin)
Ms Dawson the claimant is a 54 year old who lives with spina bifida and hydrocephalus. She uses a wheelchair. She claimed that the NHS Trust breached s.242 National Health Act 2006 as they failed ‘to make arrangements to secure involvement of service users in decision-making about services.
Ms Dawson’s claim arose after the NHS Trust had re-organise their services during the COVID-19 pandemic, to create separate clinical areas for COVID-19 and non-COVID patients. The changes meant the Ms Dawson had to travel 27 miles each way for her routine consultant appointments, rather than her usual seven miles.
In defence to Ms Dawson’s claim, the NHS Trust argued that the extraordinary demands of the pandemic meant it was not feasible or appropriate for them to do more to involve service users in the decision. They also argued that the service users and public were involved at the earliest opportunity and that the arrangement was both a temporary one and kept under regular review. They also argued that a member of the Trust staff discussing the new arrangements in a radio interview amounted to consultation.
The judge, Mr Justice Linden, rejected the NHS Trust’s arguments. He found a ‘total failure’ on the part of the Trust to involve service users in the development of the service, as required by the legislation. He found the radio interview ‘insufficient’, particularly as it did not give service users or the public the opportunity to respond. He also rejected the NHS Trust’s argument that staff were ‘too busy doing other things’, as this argument was contrary to the purpose of s.242. The fact that the NHS Trust was dealing with the challenges of the COVID-19 pandemic did not release them from their duties under s.242. As the judge held, s.242 is mandatory and no statutory exemption to it has been issued under the COVID-19 legislation.
The judgments contains a useful exploration of the nature of NHS Trust’s duties under s.242 and the meaning of terms such as ‘involvement‘.
High Court, Family Division, 26th March 2021: Can parents consent to their child having puberty blocker treatment for gender dysphoria and/or whether as a matter of legal requirement or professional good practice, applications should be made to the Court, before puberty blockers are prescribed to children and young people?
AB v CB & Ors [2021] EWHC 741 (Fam)
In this application by Child XY’s mother AB, the Court was asked to address two issues. The first was whether XY’s parents AB and her dad CB could legally consent to XY receiving puberty blockers prescribed to treat 15 year old XY’s gender dysphoria. The second was whether treatment with puberty blockers fell under the limited number of medical treatments where an application to the court must be made for consent to treat, before treatment is given.
The second respondent in the action was The Tavistock and Portman NHS Foundation Trust, the home of the Gender Identity Development Service (GIDS), a multi-disciplinary service commissioned by NHS England to provide specialist assessment, consultation and care for children and young people with gender dysphoria.
The third respondent was University College London NHS Foundation Trust, who work with GIDS to treat child and adolescent patients with gender dysphoria.
The 2020 case of Bell also involving the Tavistock and Portman NHS Foundation Trust was identified by the judge Mrs Justice Lieven, as ‘of great relevance’ to this case, as Bell considered in detail the nature of puberty blockers, in particular their experimental nature; questions as to their reversibility and the life long and life changing nature of the treatment. The judge however, stated that this case was different from Bell, as that case did not consider whether parents could consent to treatment.
The Court reviewed the scope of parental responsibility, considering s.2 and s.3 of the Children Act 1989; Article 5 of the UNCRC and in passing, Article 8 of the ECHR.
The Court stressed the importance of respecting parents’ decisions about their child stating: ‘The case law is replete with judicial statements about not merely the centrality of parents in decisions about their children, but also as to why the Courts in the vast majority of situations respect and uphold parents’ views and decision making about their children’ (para 44)
The judge considered whether a child being Gillick Competent to consent to puberty blockers extinguishes a parent’s legal right to consent or whether a parent can have a concurrent right to consent along side a child who is Gillick competent to consent to puberty blockers. The judge concluded that parents do retain a concurrent right to decide for their Gillick competent child, but that is a right to decide in a child’s best interests when the child is unable to make the decision him or herself. A parent does not have a right to trump a decision made by a Gillick competent child. This however, was not an issue in this case where all parties were agreement that the XY should have treatment. Mrs Justice Levien also highlighted the possibility of parents being pressured by their child to consent to treatment and the need for health professionals to be open to this possibility. Again an issue not relevant in this case.
(Note: If you are unfamiliar with the term ‘Gillick Competence’ you can find a brief explanation of it in our Glossary)
After careful consideration of the case law relating to circumstances where applications must be made to Court before treatment begins, the Court held that treatment with puberty blockers did not fall within this limited group of treatments. The Judge concluded that a distinction between a clinician having a legal duty to apply to Court and it being a matter of professional common practice that applications were made to Court in such circumstances, was not an important distinction. She took the view that if a clinician failed to apply to Court in circumstances when it is common practice for clinicians to do so, he or she would be subjected to significant criticism and very likely disciplinary action, making common practice akin to a legal duty.
Mrs Justice Levien further reasoned that the treatment of children and young people with gender dysphoria is such a a highly specialist field, all working closely together as to make it difficult for parents to obtain a truly independent second opinion. In her view regulation of the relevant NHS Trusts by the Care Quality Commission; regulation of the professionals involved by their professional bodies and academic exploration of the issues involved, was a better way to regulate puberty blocking treatments than litigation.
Mrs Justice Levien also opined that the findings of the current Cass Review (see below) would also play a key role in this regard. The judge did, however, state that in cases where clinicians feared parents were being pressured by their child to consent to treatment; cases which were finally balanced as to whether treatment was in a child’s best interests and cases where there was disagreement between clinicians should be referred to court. In other cases, parents and a child who is Gillick competent in relation to that decision, have the legal power to consent to treatment, without an application to Court.
An important note on Gillick competence: As Mrs Justice Levien makes clear in her carefully chosen words, a young person is Gillick competent in relation to a particular decision and indeed, at a particular time and place. A young person is not either globally Gillick competent is relation to all clinical decisions or globally Gillick competent.
The Cass Review mentioned by Mrs Justice Levien is an independent review of child and young person’s gender identity and gender dysphoria health services. The Cass Review describes its aims on its website: ‘to ensure that children and young people who are questioning their gender identity or experiencing gender dysphoria, and who need support from the NHS, receive a high standard of care that meets their needs and is safe, holistic and effective’. The Review will draw on academic expertise and lived experience, as well as the expertise of the review team. The review is chaired by Dr Hilary Cass, who was appointed to chair the review by NHS England and NHS Improvement in 2020. Dr Cass is a paediatrician, a former president of the Royal College of Paediatrics and Child Health and former chair of the British Academy of Childhood Disability.
Open Consultations: Click on the links below to find out more about each consultations and to respond to them. When available, an Easy Read version of the consultation is also listed.
England Mental Health Units (Use of Force) 2018 Statutory Guidance Consultation Easy Read Version of Consultation
Closing Date: Midday (BST) 17th August 2021 England and police officers from Wales
This consultation is on the statutory guidance to be issued on how the Mental Health Units (Use of Force) Act 2018 should be implemented by NHS hospitals and private hospitals providing NHS care to patients with mental disorders. The guidance will also apply to police officers when in mental health units. The Department of Health and Social Care state on the consultation website, that they are particularly keen to hear the views of individuals with lived experience, especially those who have been subjected to the use of force in a mental health unit.
The Appointment and Operation of the Patient Safety Commissioner Consultation
Closing Date: 11.45pm on 5th August 2021 England
This consultation from the Department of Health and Social Care seeks views and comments from those who may be affected or have a particular interest in the set up and functions of the new Patient Safety Commissioner for England. Views are sought on the proposed legislative details of the appointment and operation of the Commissioner.
The scope and duties of the Commissioner are now enshrined in the Medicines and Medical Devices Act 2021.
The National Institute for Health and Care Excellence, who provide evidence based guidance and advice and develop quality standards and performance metrics for use in health and social care, consult routinely on their work. You can link to their current consultations HERE.
Scotland
No current relevant Scottish government consultations have been identified. If you are aware of any, please send us details so we can share them here, using the CONTACT US tab above.
The Scottish Intercollegiate Guidelines Network, produce evidenced based clinical guidance for use in Scotland. They use professional and lay reviewers to review their draft guidelines, you can contact them to be a reviewer via their website.
Wales
Arthritis and long-term musculoskeletal conditions in adults framework consultation
Closing date: 30th July 2021
This consultation from the Welsh government is seeking views on the framework which aims to strength services. The framework is described as doing this by providing condition specific information to clinicians and providing actions against which Welsh health boards can measure their services. The Welsh government are consulting on how to progress the framework, with the view of improving care and treatment for patients.
UK wide
Medicine & Healthcare products Regulatory Agency Patient Involvement Strategy Consultation
Closing Date: 11.45pm 28th June 2021
The Medicines and Healthcare products Regulatory Agency is an executive agency of the Department of Health and Social Care, responsible for ensuring medicines and medical devices across the UK are safe. This consultation is seeking views of their draft patient involvement strategy.
Consultations on Ethical Issues
Nuffield Council on Bioethics are seeking contributions to inform their inquiry on the role of science and technology in helping people live well in old age.
Closing Date: 2nd August 2021
The Consultation provides fours ways to contribute:
There is a Call for Evidence, designed primarily for academics and policy-makers who have an interest in aging, although the Council say they welcome responses from anyone who is interested. There is also a survey for practitioners who work with older people; a set of fictional scenarios people are asked to respond to directly and a call for people’s personal stories.
AdsFoundation will be running a series of on-line workshops on healthcare law and ethics starting early 2022. Please CONTACT US if you would like to be sent more information about these.
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. Please use the CONTACT US tab above to share your thoughts with us. Thank you
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