Law and Ethics Update – Summer 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 networks.

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 be taking 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 progressing through Parliament on the Parliament website.

There are fewer Bills which have passed their second reading for inclusion in this quarterly update as the Parliamentary year started on 10th May 2022.

Bills

Westminster

British Bill of Rights 

This Bill was introduced into the House of Commons by Justice Secretary Dominic Raab on 22nd June 2022. We have exceptionally included this Bill in this update despite it not yet having passed its second reading, because here at the Adam Bojelian Foundation we share the concerns expressed by other legal and rights experts about the potentially devasting impact of this Bill.  If enacted it would restrict the human rights of the most vulnerable members of society, including those dependant on public services such as the NHS and local authorities.  We therefore think it is vitally important that health and care professionals and those using their services are aware of the implications of the Bill. We hope those of you who are able to do so, will use what influence you have, for example through your professional bodies, networks and MPs to express concerns about this retrograde Bill.

The government held a consultation on their proposals prior to introducing the Bill. The government has not published the responses they received to that consultation, but responses have helpfully been collated by the British Institute of Human Rights and can be read from this LINK.

The Law Society, the professional body representing solicitors in England and Wales issued this press release on 22nd June.  Law Society President Stephanie Boyce said of the Bill:

“The bill will create an acceptable class of human rights abuses in the United Kingdom – by introducing a bar on claims deemed not to cause ‘significant disadvantage’.

“It is a lurch backwards for British justice. Authorities may begin to consider some rights violations as acceptable, because these could no longer be challenged under the Bill of Rights despite being against the law.

“Overall, the bill would grant the state greater unfettered power over the people, power which would then belong to all future governments, whatever their ideologies.

“The disregard for the rule of law the government is repeatedly signalling both at home and abroad – also inherent in this bill – risks inflicting serious harm on Britain’s reputation with trade partners, business and in the international arena.”

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

This Bill introduced in the House of Lords, aims to provide for certain social security rules which apply where life expectancy is 6 months or less to apply instead where life expectancy is 12 months or less.  The proposed changes would allow those thought to be in the last 12 months of life, as opposed to the current situation of the last 6 months of life, to be fast tracked for Disability Living Allowance, Personal Independence Payments and Attendance Allowance.

The Bill has passed the Second Reading and Committee stage in the House of Lords and is scheduled for a 3rd Reading at the time of writing (22.06.2022).

These Explanatory Notes published by the Department of Work and Pensions, explain the rationale behind the Bill.

Scottish Parliament

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

Coronavirus (Recovery and Reform) (Scotland) Bill

This Bill has reached Stage 3 in its passage through the Scottish Parliament, this is the stage where Members of the Scottish Parliament can propose further changes to the Bill, and debate and vote on whether to make the Bill law.

This Bill introduces changes in the law in the light of the Coronavirus pandemic. New powers will be introduced to respond to future public health emergencies, including within schools, colleges and universities.

Some of the temporary changes made during the pandemic will become permanent, for example, it will be possible to register births and deaths electronically, before the pandemic this had to be done in person.

Changes are also introduced in relation to housing and the justice system.

Good Food Nation (Scotland) Bill

This Bill aims to require public bodies,  including health boards (Scottish equivalent of NHS Trusts) and local authorities, to create ‘Good Food Nations Plans’.  The Plans must set out each the outcomes each public body aims to achieve in relation to food; the indicators by which outcomes will be measured; and the policies the body will adopt to achieve those outcomes.

The Bill has reached Stage 3 in its passage through the Scottish Parliament, this is the stage where Members of the Scottish Parliament can propose further changes to the Bill, and debate and vote on whether to make the Bill law.

National Care Service (Scotland) Bill

Explanatory Notes

This Bill was introduced to the Scottish Parliament on 20th June 2022. It aims to transfer responsibility for social care from local authorities to a national care service, paralleling the National Health Service. Care Boards will be established to parallel NHS Boards (Scottish equivalent to NHS Trusts in England).

Scottish Government have given a commitment that they will co-design the new service with current care staff; service users; their families and carers.

Scottish Government state it aims to:

• support people in their own homes or among family, friends and community wherever possible, with seamless transitions between services;
• create a charter of rights and responsibilities for social care, with a robust complaints and redress process;
• introduce rights to breaks for unpaid carers
• introduce visiting rights for residents living in adult care homes, giving legal force to Anne’s Law*
• ensure fair employment practices and national pay bargaining for the social care workforce;
• focus on prevention and early intervention before people’s needs escalate;
• create a new National Social Work Agency to promote training and development, provide national leadership and set and monitor standards in social work.

*Anne’s Law gives the right to those needing care to see their families and to receive care from them.

New Acts of the UK Parliament

British Sign Language Act 2022

This Act is law in England, Scotland and Wales.

Under the Act British Sign Language (BSL) is recognised as a language.

The Act imposes various duties on the Secretary of State, including publishing a periodic report on what each relevant government department has done to promote and support the use of BSL in its communication with the public.

Downs Syndrome Act 2022

This Act is law in England and Wales.

The Act imposes a duty on the Secretary of State to issue guidance to ‘relevant authorities‘ on the steps they should take to ensure the needs of individuals with Downs Syndrome are met when those authorities are carrying out ‘relevant functions’.

‘Relevant authorities‘ are listed in the schedule of the Act and include the NHS, local authorities and schools.

‘Relevant functions’ are also listed in the schedule of the Act, these are the functions the relevant authorities have under various Acts of Parliament.

Health and Care Act 2022

Most of this Act applies in England and Wales, but certain sections apply only in Scotland and others only in Northern Ireland. Section 185 of the Act sets out which sections of the Act apply where, so should be checked when reading the Act.

Section 186 should also be checked to ensure the Section of the Act you are reading is currently in force.

This Act is wide ranging, with over 200 provisions, bringing in significant changes in the organisation and delivery of health and care services in England.

This paper from the Kings Fund explains what the changes in the Act will mean in practical terms.

The Kings Fund have also produced this short video explaining how the NHS in England worked before the Act and how it will work in future.

The British Medical Association, the professional body representing medical doctors, have also produced a briefing on the 2022 Act

You can also read the media release issued by the UK government on the day the Act received Royal Assent.

New Intergraded Care Systems (ICSs) are at the core of the new Act and will fundamentally change how the NHS works and its relationship with local communities.

You can read more about ICSs in this briefing paper from the Health Foundation

The AdsFoudation will soon add a Health and Care Act 2022 resources page to its external resources. 

Judicial Review and Courts Act 2022

Certain sections of this Act apply only to England and Wales, some sections apply in Scotland and Northern Ireland. When reading the Act check in section 50 to confirm whether the section you are reading applies to the part of the UK which is relevant to you.

This Act introduces some changes to judicial review and introduces measures to help address the backlog across the criminal courts, tribunals and coroners courts.

Chapter 4 deals with coroners courts and measures introduced include the allowing of virtual hearing and a power granted to coroners to discontinue an investigation where the cause of death becomes clear without a post-mortem examination.

The Ministry of Justice has published Explanatory Notes explaining the Act in detail.

Professional Qualification Act 2022

This Act applies to England, Wales, Scotland and Northern Ireland

The Act revokes the EU regulation (The European Union (Recognition of Professional Qualifications) Regulations 2015) which was previously in place within the UK.

The Act also grants UK regulators such as the General Medical Council and the Nursing and Midwifery Council, in specific circumstances, the power to determine which overseas qualified professionals should be allowed to practice within the UK.

The Act also aims to make it easier for UK professionals to work overseas.

Policy Papers

Westminster

Green Paper: SEND* Review: Right support, right place, right time Government consultation on the SEND and alternative provision system in England (published 29th March 2022)

LARGE PRINT VERSION

Westminster Government Summary of Green Paper

This Green Paper featured in our March 2022 Law and Ethics Update, but is included again in this quarter’s edition because the UK Government’s consultation on its proposals remains open until 1st July 2022 (see below).

The Special Needs Jungle, a parent led third sector organisation, recently held a webinar on the legal implications of the government’s proposals with expert panelists including Steve Broach, Barrister 39 Essex St Chambers and Rukhsana Koser, Partner Langley Wellington Solicitors.  The Special Needs Jungle have kindly given us permission to share the link to their webinar.

The Green Paper sets out the Westminster government’s proposals to reform support for children and young people in England with special educational needs and disability.

It states that children and young people with special educational needs and those living with disability ‘feel unsupported‘. (Editors note: acknowledging that they are unsupported would perhaps inspire more confidence). It also acknowledges that these children and young people often ‘fall behind..their peers‘. The challenges parents face acknowledging an often adversarial system are also acknowledged.

The Green Paper identifies three key challenges, in the government’s words:

1. ‘Outcomes for children and young people with SEN or in alternative provision are poor;
2. Navigating the SEND system and alternative provision is not a positive experience for children, young people and their families; and
3. Despite unprecedented investment, the system is not delivering value for money for children, young people and families.’

Westminter Government Consultation on the proposals set out in the Green Paper is now open, with a 11.45pm on 22nd July 2022

The government are seeking the views especially of:

• children and young people;
• parents and carers; and
• professionals working in special education or ‘alternative provision’.

The Special Needs Jungle have also produced these RESOURCES for anyone wishing to respond to the government’s consultation.

Westminster Government Policy Paper: Department of Health and Social Care mandate to Health Education England: April 2022 to March 2023 (22nd June 2022)

The government is required under the Care Act 2014 to provide this mandate to Health Education England (HEE)* setting out its strategic objectives for workforce planning, education and training.

* In November 2021 the government announced that it intends HEE, NHS Digital and NHS England to merge to form a single organisation. The Policy Paper therefore only covers one year, during which HEE will be in transition.

Westminster Government Policy Paper: Prevention Concordat for Better Mental Health 16th June 2022

The aim of the concordat is to provide cross-sector action on mental health, with a particular focus on a prevention of poor mental health. The concordat aims to promote evidence based planning and commissioning to help reduce health inequalities.

Local authorities, health and wellbeing boards, Integrated Care Systems (ICSs), sustainability and transformation partnerships (STP), and other health partnerships are invited to sign up to the Concordat. Voluntary, community and third sector organisations are told to partner with local authorities and ICSs to apply.

Westminster Government Policy Paper: Data saves lives: reshaping health and social care with data (13th June 2022) England

This is the final version of the Health and Social Care Secretary’s strategy setting out their plans to harness the potential of data in health and care in England. The government state the highest standards of privacy and ethics will be maintained.

The government state that the strategy:

• ‘provides an overarching narrative and action plan to address the current cultural, behavioural and structural barriers in the system, with the ultimate goal of having a health and care system that is underpinned by high quality and readily available data’
• ‘marks the next step of the discussion about how we can best utilise data for the benefit of patients, service users, and the health and care system.’

Scotland

Scottish Government Plan: C0-Design  of the National Care Service

British Sign Language Version

Audio Version

EASY READ Version

The Scottish Government made a commitment to begin the consultation process on a
National Care Service within the first 100 days of this Parliament. A consultation on
the National Care Service ran from 9 August 2021 until 2 November 2021.

The National Health Care Service (Scotland) Bill was introduced into the Scottish Parliament on 20th June 2022 (see above).

Scottish government (SG) state that the Scottish National Care Service (SNCS) will be designed together with the people who use and provide social care support and other relevant services. SG state that lived experience at the heart of their future co-design programme to ensure that it embodies human rights principles and delivers for the needs of people and not the system.

This document explains the way in which SG hope that collaboration will work, how the views and expertise of those who have experience of the system will contribute and where responsibility for decision making will lie.

Scottish Government Strategy: Neurological care and support; framework for action 2020-2025

This strategy sets out Scottish Government’s plans for improving the care and support of people living with neurological conditions in Scotland.

Scottish Government state their aim is that ‘everyone with a neurological condition will be able to access the care and support they need to live well, on their own terms’. This will, encompass:

• ensuring people with neurological conditions are partners in their care and support;
• improving the provision of co-ordinated health and social care and support;
• ensuring high standards of effective, person-centred, safe care and support;
• ensuring equitable and timely access to support and care across Scotland; and
• building a sustainable neurological workforce for the future.

Wales

Welsh Government Policy & Strategy Learning Disability Strategic Action Plan 2022-2026

EASY READ version

This document sets out Welsh Government’s intentions for Learning Disability policy development.

The Welsh Government commit to including people living with learning disabilities, their families and carers and third sector organisations in the development of policy. They identify the following priority areas:

• Overarching/cross-cutting, including cross-government activity that may not sit in one specific area
• COVID recovery
• Health, including reducing health inequalities and avoidable deaths
• Social services and social care
• Facilitating independent living and access to services through increased access to advocacy and self-advocacy skills, engagement and collaboration
• Education including children and young people’s services
• Employment and skills
• Housing – appropriate housing, close to home, access to joined-up services
• Transport

Welsh Government Policy & Strategy: Transforming and modernising planned care and reducing waiting lists

Welsh government’s plan aims to encourage health and social care organisations to focus on:

• transforming outpatient services
• prioritising diagnostic services
• early diagnosis and treatment of suspected cancer patients
• patient prioritisation to minimise health inequalities
• those waiting a long time
• building sustainable planned care capacity
• improving communication and support

Welsh Government Policy & Strategy: Strategy for an ageing society; delivery plan

Welsh government identify the aims of this strategy to:

• raise awareness of older people’s rights
• tackle age related poverty
• improve public services and spaces
• reduce loneliness by promoting volunteering

INVESTIGATION  & OTHER REPORTS

UK Parliament Commons Select Committee on Health and Social Care

The Commons Select Committee on Health and Social Care is a cross-party committee responsible for scrutinising the work of the Department of Health and Social Care (England) and its associated public bodies. The Committee examines government policy, spending and administration on behalf of the electorate and the House of Commons. The current chair is Jeremy Hunt MP. You can follow the work of the Committee on twitter @CommonsHealth.

The Commons Select Committee on Health and Social Care are currently investigating:

• Digital transformation in the NHS
• The impact of body image on mental and physical health
• The future of General Practice

You can find out more about these inquiries and get involved using this LINK.

Commons Select Committee Reports

Cancer Services 29th March 2022

UK Government response to Report

This Report into Cancer care in England finds that whilst cancer survival has improved since the early 1970s, cancer outcomes in England are still behind those of comparable nations, such as Canada and Australia.

NHS Litigation Reform 20th April 2022

This Report recommends moving away from a system of litigation of apportioning blame and towards a system of learning from mistakes, to both reduce the costs of NHS litigation and to reduce patient harm.

The UK government have not yet published their response to this report.

NHS England Independent Investigations

The above link can be used to access the reports of the independent investigations into patient care carried out by NHS England since 2013.

Scottish Parliament Health, Social Care and Sport Committee

This is a cross-party committee of the Scottish Parliament, established in June 2021. It focuses on:

• health services in Scotland, including performance, staffing and funding;
• primary care, including dentistry, GPs and pharmacy services;
• public health, mental health and wellbeing and drugs misuse;
• social care; and sport and physical activity.

Report: Health and Wellbeing of Children and Young People 13th May 2022

This is the Report of the inquiry conducted by the Scottish Parliament’s Health, Social Care and Sport Committee.

The Committee commenced their inquiry in November 2021 and sought to identify:

• What are the key issues around health and wellbeing for children and young people in Scotland?
• What are the current challenges to improving the health and wellbeing of children and young people over the next 5 years?
• What offers the best opportunity for improving the health and wellbeing of children and young people over the next 5 years/
• How does addressing poverty lead to improved health and wellbeing?

The Committee’s investigation included engagement with children and young people.

Report: Alternative Pathways to Primary Care 17th June 2022

This is the Report of the inquiry conducted by the Scottish Parliament’s Health, Social Care and Sport Committee.

The objectives of this inquiry were to:

• establish how widely patient accessed primary care other than by visiting their GP;
• gather evidence from patients and health practitioners on their experience of the use of these different pathways;
• assess awareness of these pathways amongst both patients and health practitioners;
• established whether the pathways are being used effectively or how they could be more effectively used;
• to make policy recommendations to Scottish Government and other key decision-makers, based on the inquiry findings.

Welsh Parliament (Senedd) Health and Social Care Committee

This is a cross-party committee of the Senedd which looks at Welsh health and social care policy and legislation, and aims to hold the Welsh Government to account on specific issues. This includes the physical, mental and public health and well-being of the people of Wales, including the social care system.

The Committee has six members from the different parties represented in the Senedd. It is chaired by Russell George MS.

Hospital discharges and its impact on flow through hospitals June 2022

This report from the Welsh Parliament’s Health and Social Care Committee found that although the COVID19 pandemic made the situation worse, delayed discharges from Welsh hospitals is a long standing problem.

The report recognises the human cost to patients and their families of these delays. It identify as among the many factors causing the delay and needing tackling ‘poor communication and lack of integration and joined up working’.  

Waiting Well? The Impact of the waiting times backlog on people in Wales, April 2022

This report from the Welsh Parliament’s Health and Social Care Committee found people in Wales were already waiting too long for diagnosis, care and treatment before the COVID19 pandemic and the pandemic has made the situation worse.

The problem exists across all specialties and all stages of the pathway, including outpatients, diagnostics, therapy services, mental health support, pain relief
and treatment.

The Committee stress that waiting times have to be improved beyond pre-pandemic times and report on causes and potential solutions.

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.

There are no significant legal cases to report this quarter. Instead we have included the following Court of Protection case from March 2021 as it illustrates well how potentially end-of-life best interest decisions should be made, applying(for adults) on the Mental Capacity Act and leading cases.

Court of Protection

 London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment) [2021] EWCOP 727 (24 March 2021)

This case addressed the question as to whether life sustaining treatment should be withdrawn from CD, referred to as Lilia throughout the judgment, a 20 year old who sustained catastrophic hypoxic brain injury leaving her in a vegetative state, following her attempt at suicide by asphyxiation in January 2021. Lilia had lived with ‘complex and multi-faceted’ psychological and psychiatric conditions which led to her suicide attempt.

The judge William J, explained in some detail how the decision should be made. The judge also described the medical evidence as ‘unambiguous‘. This medical evidence came from the clinical team treating Lilia and a second opinion requested by Lilia’s father.

Lilia’s father held the view that Lilia’s condition could potentially improve and that it was in Lilia’s best interests for treatment to continue. Lilia’s mother and sisters held the view it was in Lilia’s best interests to withdraw life sustaining treatment.

The Official solicitor (an officer of the Court who acts on behalf of people who are unable to act for themselves), also sought the views of Lilia’s friends as to her wishes and evidence was also heard of her grandparents’ views.

The Court considered in some detail the Mental Capacity Act 2005  particularly Section 4 which deals with best interests, and its Code, particularly paragraphs 5.31 – 5.35.

The following cases were also considered:

i) Re G (Education: Religious Upbringing) [2012] EWCA Civ 1233, 2013 1 FLR 677.

ii) Re A (A Child) 2016 EWCA 759.

iii) An NHS Trust v MB & Anor [2006] EWHC 507 (Fam).

iv) Re G (TJ) [2010] EWHC 3005 (COP).

v) Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591.

Particular consideration was given to the Aintree case, the first case considering the Mental Capacity Act 2005 to reach the Supreme Court. At paragraph 18, the judge Williams J quoted Baroness Hale’s judgment at paragraphs 22 and 39 in the Aintree case:

‘[22] Hence the focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.’

‘[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.’

Baroness Hale was stating well established legal principles in Aintree. The key question as explained in paragraph 22 of Aintree, is whether it is in a patients best interests to give the treatment in question not whether it is in a patient’s best interest to withhold treatment. As Baroness Hale states, a Court can not consent on a patient’s behalf to treatment not in the patient’s best interests. This means withdrawing or withholding the treatment held not to be in the patient’s best interests, would not be unlawful.

Another well established legal principle when considering a patient’s best interests, is that the patient’s welfare must be considered widely, as explained in paragraph 39 of Aintree, this is not just a medical or clinical question, but requires looking at the patient’s life as widely as possible.  Moreover, it is the patient’s view, as far as they can be ascertained, as to their best interests which is should be considered, (a subjected test) not what others objectively believe to be in the patient’s best interests . As was seen above, Lilia’s friends and wider family were consulted to help the Court consider these factors.

In Lilia’s case at paragraph 21, Williams J also quoted with approval from the Court of Appeal’s judgment in Re A (A Child) 2016 EWCA 759.  Re A stated more well established legal principles when making potentially end-of-life best interest decisions. (i) These decisions are balancing exercises, weighing up a multitude of factors; (ii) there is a strong presumption in favour of sustaining life; (iii) weight must be put on the value severely disabled people place on their own lives; and (iv) all cases are fact specific, meaning cases can sent a legal precedent as to how decisions should be made, but cannot set a precedent as to whether treatment should be sustained, given, withdrawn or withheld as this will be different for each individual.  The Court of Appeal in Re A stated:

‘In considering the balancing exercise to be conducted:

“‘1. The decision must be objective; not what the judge might make for him or herself, for themselves or a child;

2. Best interest considerations cannot be mathematically weighed and include all considerations, which include (non-exhaustively), medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations;
3. There is considerable weight or a strong presumption for the prolongation of life but it is not absolute;
4. … account must be taken of the pain and suffering and quality of life, and the pain and suffering involved in proposed treatment against a recognition that even very severely handicapped people find a quality of life rewarding.
5. Cases are all fact specific.’

Williams J also considered the implications of Article 2 of the European Convention on Human Rights, the right to life.

With adults (those 16 and older) the Mental Capacity Act and its Code sets out how best interest decisions should be made. For those under 16 decisions are essentially made in the same way using the same legal principles, but for those under 16, these principles are found in the case law of the English Court, they are not codified in a statute.

Consideration was also given by William J as to weight that should be given to Lilia’s known or assumed wishes. This again is an issue that has been considered many times by the Courts. Williams at paragraph 23 quoted M v N (by her litigation friend, the OS), Bury Clinical Commissioning Group [2015] EWCOP 9 Hayden J (paras. 28, 30), making clear that the patient’s wishes whilst always afforded great respect and given detailed consideration, they are not determinative. One of the reasons for this is that it will be rare that an individual would have had all the relevant information available to them or even expressed a view on the particular circumstances in which they are now in. Also, it is very difficult for anyone to imagine life in a state they have never personally experienced:

“…..where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect. That said, they will rarely, if ever, be determinative of P’s ‘best interests’. Respecting individual autonomy does not always require P’s wishes to be afforded predominant weight. Sometimes it will be right to do so, sometimes it will not. The factors that fall to be considered in this intensely complex process are infinitely variable e.g. the nature of the contemplated treatment, how intrusive such treatment might be and crucially what the outcome of that treatment maybe for the individual patient. Into that complex matrix the appropriate weight to be given to P’s wishes will vary. What must be stressed is the obligation imposed by statute to inquire into these matters and for the decision maker fully to consider them. Finally, I would observe that an assessment of P’s wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said. Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said. Evaluating the wider canvass may involve deriving an understanding of P’s views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment. Mr Patel, counsel acting on behalf of M, has pointed to recent case law which he submits, and I agree, has emphasised the importance of giving proper weight to P’s wishes, feelings, beliefs and values see Wye Valley NHS Trust v B.’

Having weighed up the evidence the judge Williams J, concluded at paragraph 68 that Lilia would not have wanted to continue life in her current state and that it was in her best interests for life sustaining treatment to be withdrawn.

‘Factoring in objectively the medical evidence of her current condition and prognosis, even allowing for the limited and remote possibilities of neurological improvement and the absence of any meaningful quality of life, the harm that further medical treatment will inevitably involve (albeit probably not with any awareness for Lilia), what I’m sure would have been perceived by Lilia as the indignity of her condition and her need for lifelong physical care, and all of her wishes as analysed above, the views of her family and friends, the opinions of all her treating team and the independent experts, I’m satisfied that it is not in Lilia’s best interests to administer life-sustaining medical treatment but rather that it is in her best interests to implement a palliative care regime the consequence of which (but not the aim) will be the end of her life but that I think will be an ending to her story essentially of her choosing and one which I feel confident she would endorse.’

Open Consultations and Inquiries

UK Government Consultations

Changes to the Mental Capacity Act Code of Practice and implementation of Liberty Protection Safeguards

Applies to England and Wales

WELSH Version

EASY READ Version

The UK government consultation was listed in our March quarterly update, but is relisted as it is still open and of particular importance. The UK government is consulting on changes to the MCA Code of Practice, which sets out in detail how the MCA should be applied and on its proposed regulations for the new Liberty Protection Safeguards (LPS) which are replacing existing Deprivation of Liberty Safeguards (DOLS).  They are also asking for feedback on documents produced to help with the implementation of LPS. Both DOLS and LPS are designed to protect those detained for treatment or care who are deemed to lack capacity to consent to their confinement and/or treatment or care.

You can learn more about LPS and the DOLS they replace on this page from our external resources.  As you can read, the Supreme Court in the 2014 case of Cheshire West held that the safeguards apply widely, including for example to an individual being cared for in their own home.

This Consultation closes at 11.45 pm on 7 July 2022

Consultation: SEND (Special Educational Needs and Disability) review: right support, right place, right time. (ENGLAND)

EASY READ Version

LARGE PRINT VERSION

This Westminster government Consultation was also featured in our March update but is still open.

The government are seeking views on their Green paper about the changes they want to make to the special educational needs and disabilities and alternative provision in England.

The government are seeking the views especially of:

• children and young people;
• parents and carers; and
• professionals working in special education or ‘alternative provision’.

As mentioned above, the Special Needs Jungle, a parent led third sector organisation, recently held a webinar on the legal implications of the government’s proposals with expert panelists including Steve Broach, Barrister 39 Essex St Chambers and Rukhsana Koser, Partner Langley Wellington Solicitors.  The Special Needs Jungle have kindly given us permission to share the link to their webinar.

The government are seeking the views especially of:

• children and young people;
• parents and carers; and
• professionals working in special education or ‘alternative provision’.

The Special Needs Jungle have also produced these RESOURCES for anyone wishing to respond to the government’s consultation.

This Consultation closes at 11.45pm on 22nd July 2022

Consultation on the future strategy for batch testing of medicinal products in Great Britain

This consultation is on four UK government proposals for a future policy on batch testing of medicines for Great Britain, needed now the UK has left the EU.

Batch testing is a process of laboratory tests by the manufacturer to ensure every batch of medicine has the correct composition.

The government puts forward four options in the consultation for comment:

1. no import testing or UK QP* certification or release for listed countries;
2. no import testing but implementing UK QP certification and releases for listed countries;
3. full quality control batch testing and implementing UK QP certification and release for all non-MRA countries (MRA is Mutual Recognition Agreement, which allows countries to recognise testing and inspections across national boundaries ; and
4. reduce number of import tests and implementing UK QP certification and release for all listed countries.

*QP= Qualified Person – Under EU law a suitable Qualified Person is responsible for assuring the quality of medicines and is legally responsible for certifying batches of medicines before they are released to the public.

This Consultation closes at 11.45 pm on 26 July 2022

Scottish Government Consultations

Data Strategy for health and social care

EASY READ Version

British Sign Language Version

Scottish Government are consulting on how data should be used and managed across health and social care.  The consultation answers will, Scottish Government say, be used to help shape the development of Scotland’s first data strategy for health and social care.

This Consultation closes on 12 August 2022

Welsh Government Consultations

Liberty Protection Safeguards

This Consultation by the Welsh Government, featured in our March quarterly update is still open and is additional to the UK Government’s consultation about proposed changes to the Mental Capacity Act 2005 and introduction of Liberty Protection Safeguards (see above under UK Government Consultations).

This Consultation closes on 7th July 2022

Draft HIV action plan for Wales 2022 to 2026

This Consultation is on the Welsh Government’s HIV Action Plan for Wales which aims to tackle the stigma experienced by those living with HIV. The plan has the following guiding principles:

• no-one should be left behind;
• inclusivity and diversity should be encouraged and celebrated;
• and all communities should be an integral part of the dialogue, debate and decision making on HIV.

The consultation outlines priorities and actions and Welsh government is asking for feedback on whether these are the correct priorities and actions.

This Consultation closes on 14th September 2022

Proposals to end the sale of energy drinks to children under 16

EASY READ Version

Video explaining the proposals

This Welsh government consultation asks for views on whether:

• the ban of energy drinks should apply to children under 16
• the ban be widened to consider other drinks typically high in caffeine such as tea and coffee
• the ban should cover all shops, including through online environments

This Consultation closes on 1st September 2022

Healthy food environment

EASY READ Version

Video explaining the proposals

In this Consultation the Welsh government are asking for views of their proposals covering three themes:

1. healthier shopping baskets – to promote healthy food choices
2. healthier eating out of the home- improve available information
3. healthier local food environments- promote positive choices of hot food take aways

This Consultation closes on 1st September 2022

Northern Ireland Consultations

Raising a Concern in the Public Interest (Whistleblowing) HSC Framework and Model Policy

This Northern Ireland government consultation asks for views on the current draft of the Raising a Concern in the Public Interest (Whistleblowing) HSC Framework and Model Policy document.

The document sets out the process for raising a concern and anyone with an interest is invited to respond to the consultation.

Views are particularly sought on:

• the model;
• roles and responsibilities; and
• monitoring arrangements.

This Consultation closes at 17.00 on 26th August 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 September 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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