Law, Policy and Ethics Update – Autumn 2024
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.
If you find the free resources, including this quarterly update helpful and are in a position to do so, it is now possible to make a donation to support the work of the Adam Bojelian Foundation CIC using this LINK TO DONATE
AdsFoundation Updates
In 2025 it will be ten years since the untimely death of Adam Bojelian from sepsis aged just 15 years. A number of events to celebrate Adam’s life and extend his legacy will take place through out the year. These will be announced on the AdsFoundation website and on Twitter/X using #Adam2025
#WeEatWell25
This annual challenge run by #AdsFoundation on Twitter/X runs until the end of November. The purpose of the challenge is to improve health and well-being through healthy eating. There is a different theme each year and this year the theme is healthy eating for heart health.
To take part in the challenge look for #WeEatWell25 on Twitter/X, where you will find daily heart health eating information and recipes. Post your own meals, suggestions and ideas with a photo, not forgetting to use the #. There are also daily #OptionalExtraChallenges you can take part in.
Every evening after 20.00 a Tweet/Post of the day is choosen, because it is particularly informative, helpful or fun. The person with the most Tweet/Post of the day at the end of the challenge, based in the UK, wins a basket of healthy treats donated by the AdsFoundation.
Participants from previous years report long term improvements in their eating habits leading to long-term improvements in their health and well-being.
Christmas Cards & Book
After the success of our Christmas Card featuring Adam’s poem ‘Winter’, beautifully illustrated by Millie Herriott, a new design featuring Adam’s poem ‘A Winter Haiku’ will be on sale in our SHOP from 20th November.
Also on sale will be ‘Playing With Words’ a collection of Adam’s poem’s beautifully illustrated by Millie Herriott, the perfect stocking filler for readers of all ages.
All profits are used to support the work of the AdsFoundation.
Booking now open for AdsTalk25
AdsFoundation founder and director and Adam’s mum Dr Zoe Picton-Howell will give the 2025 Adam Bojelian Memorial Talk in Leeds on Monday 31st March 2025 on the topic of Law as a catalyst for good patient care not fear. The talk will be chaired by Rob Webster. Full details and a booking link are HERE. The event is free, but booking is essential. A free sandwich lunch will be available for all delegates, donated by the AdsFoundation.
New literacy resources and service
Following the very positive feed back following the publication of Adam Bojelian’s first book of poems ‘Playing With Words‘ and launch at last year’s Edinburgh International Book Festival, especially feedback about how well Adam poems are enjoyed by children and young people and are used in some schools to promote literacy, the AdsFoundation has now added the promotion of literacy to its aims and services. Our new resources include workshops based on Adam’s poems which promote literacy to children and young people and educates them, in an age appropriate way, on the ways some disabled people communicate. Further details of our new resources and services can be found following this LINK to Literacy resources & services.
Friends of AdsFoundation The School and Public Health Nurses Association (SAPHNA) are campagning for a school nurse in every school.
(SAPHNA) is alarmed by the worsening health outcomes for children in the UK, especially in deprived areas, where issues such as mental health problems, dental decay, obesity, and respiratory illnesses are on the rise. This decline coincides with a 35% reduction in school nurse numbers since 2009.
SAPHNA emphasizes the vital role of school nurses in supporting children’s health, promoting wellness, preventing illness, and providing early intervention. They advocate for government funding to ensure every school has a qualified nurse to lead the Healthy Child Programme 0-19, which would support health promotion, early identification, and intervention, ultimately reducing health inequalities.
SAPHNA urges parents, carers, children, young people, and professionals to support their call for a school nurse in every school, viewing it as a crucial investment in the future well-being of UK children. You can at your voice to the campaign by sign SAPHNA’s petition to government, using this LINK.
Law, Policy and Ethics Update
Click on the title of each item mentioned to be linked to the document being referenced.
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 judgment was handed down by the Court of Appeal on 31st July 2024
This case is important as it reinforces the key legal prinicple in the Mental Capacity Act 2005 that disagreeing with the clincial teams treatment decision can NOT be taken as evidence of a patient lacking capacity.
Sudiksha Thirumalesh (“Sudiksha”) died on 12 September 2023. She was 19 years old.
She was born with a rare mitochondrial disorder known as Mitochondrial Depletion
Syndrome RRM2B (“RRM2B”), a chronic degenerative disease with no known cure.
Despite being critically ill and nearing death, Sudiksha was conscious and wished to pursue experimental treatment abroad, hoping to “die trying to live.” However, on 7 August 2023, a judge declared her incapable of making decisions regarding her medical care, setting a hearing for 23 October to determine her best interests. Sudiksha died before any court ruling on her best interests, and her end-of-life care proceeded under a treatment plan agreed with her parents months earlier. Although her death rendered the appeal on her incapacity academic, her parents were granted permission to appeal the declaration, with the mental health charity MIND intervening.
The Court of Appeal clarified the approach to assessing a patient’s capacity to make medical decisions when they do not accept their doctor’s prognosis. The lower court had previously determined she lacked capacity due to her refusal to believe her prognosis, affecting her ability to make decisions. Her parents appealed this declaration after her death.
The Court of Appeal ruled that the lower court had erred by treating Sudiksha’s lack of belief in her prognosis as grounds for incapacity. King LJ emphasized that, under the Mental Capacity Act 2005, understanding and weighing information is not the same as believing it. The judgment also underscored the principle of patient autonomy and the presumption of capacity, noting that an unwise decision is not necessarily an incapacitous one. The court set aside the initial declaration of incapacity, concluding that the statutory language alone should guide capacity determinations without imposing a “belief” requirement.
New Statutes, White Papers, Bills, Policy Papers, Parliamentary & Government Matters
Bills and Statutes
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, 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 Parliament
Following the election of a new labour government on 4th July 2024 several health related Bills have been introduced into Parliament. As they have not yet passed their Second Reading (see guide above) we will only list them in this edition of our update and will provide more information once they progress further. If you are particularly interested in any of the Bills listed, you can click on the link for more information.
We do however, look at the long awaited reforms to the Mental Health Act 1983 introduced to Parliament on 6th November 2024.
Bills awaiting Second Reading
Assisted Dying For Terminally Ill Adults Bill [HL]
Bereavement Support Children and Young People Bill
Carers and Care Workers Bill
Children’s Hospices Funding Bill
Educational Institutions (Mental Health Policy) Bill
Health and Safety at Work etc Act 1974 (Amendment) Bill
Health Insurance (Exemption from Insurance Premium Tax) Bill
Hospice and Health Care (Report on Funding) Bill
National Health Service Co-Funding and Co-Payment Bill
Public Health (Control of Disease) Act 1984 (Amendment) Bill
Schools (Mental Health Professionals) Bill [HL]
The Terminally Ill Adults (End of Life) Bill
Trade Agreements (Exclusion of National Health Services) Bill
Parliamentary Explanatory Notes
Impact Assessment
Reforms to the Mental Health Act 1983 have been long awaited. in 2023 the Law Society (the professional body for solicitors in England and Wales), described the current legislation as ‘outdated. It does not provide mental health patients with enough agency or choice in their care and treatment, or ensure that they are always given the dignity and respect they deserve‘. The previous conservative government did introduce a draft bill after lengthy consultation, but it never progressed through Parliament.
The government introduced the new Mental Health Bill in the House of Lords on 6th November 2024.
The new bill aims to:
- modernise the Mental Health Act to support patients better, treat them more humanely and address disparities;
- introduce statutory care and treatment plans;
- end the use of police and prison cells to hold people experiencing a mental health crisis;
- end the inappropriate detention of people with learning disabilities and autism;
- involve patients, families and carers more with the aim of improving treatments whilst protecting patients, staff and the wider public;
- give patients more dignity and say over their care.
The government published this Press Release on 6th November giving more information about the aims of the Bill.
We will be following the progress of this Bill closely and provide regular quarterly updates.
House of Commons Committees
From this LINK you can read more about the role of Parliamentary Select Committees
Health and Social Care Committee(HSC)
Like all the Parliamentary Committees, new members were appointed to the HSC following the 4th July election. You can learn which MPs are now members of this committee from this LINK . Layla Moran MP has been elected Chair.
The new HSC Commitee has opened an inquiry into the costs of not reforming adult social care. You can find the link to respond to the inquiry’s Call For Evidence under ‘Consultations’ later in this update.
Scottish Parliament
This diagram explains the stages a Bill passes through in the Scottish Parliament to become law. This link provides more information about Bills in the Scottish Parliament.
Bills and Statutes
This Bill was introduced into the Scottish Parliament on 27th March 2024. This is a Members Bill introduced by Liam McArthur MSP . Its aim is to allow terminally ill adults in Scotland, who are eligible, to lawfully request, and be provided with, assistance by health professionals to end their own life.
This Bill is at Stage 1 of its progress through the Scottish Parliament.
This Bill, featured in previous AdsFoundation updates, continues its passage through the Scottish Parliament, amendments are currently being made to the Bill by MSPs following consultation, including with Scottish Government.
Health, Social Care & Sports Committee (HSCS)
The HSCS held a consultation on the Assisted Dying for Terminally Ill Adults Bill earlier this year and published the results of that consultation on 19th September 2024, which you can read from the link.
Scottish Government
Following consultations, Scottish Government issued, on 7th October 2024, a new policy paper outlining their plans for a National Care Service for Scotland.
The paper outlines Scottish Government’s plan to centralise certain services with national oversight to ensure consistency and quality of service across the country. This includes shifting responsibility for social care from local councils to a national body with new regional ‘Care Boards’.
The paper also introduces several rights-based provisions, including guaranteed breaks for unpaid carers and ‘Anne’s Law’ protecting the rights of care house residents to see loved ones.
Concerns have been raised about the reduction in council’s autonomy and implementing consistent quality nationwide due to regional variations in demand and funding.
Welsh Parliament / Senedd Cymru
Guide to the stages of legislation in the Welsh Parliament
Explanatory Memorandum
This Bill is intended to eliminate private profit from the care of children looked after, and to enable the introduction of direct payments for Continuing NHS Healthcare. It will also make amendments to ensure that the Regulation and Inspection of Social Care (Wales) Act 2016 and Social Services and Well-being (Wales) Act 2014 are able to operate fully and effectively.
The Bill has reached stage 2 on 23rd October 2024, on its passage through the Welsh Assembly/Senedd and is currently open until 19th November for Senedd members to table amendments. (see guide above).
Welsh Government
On the 5th November 2024 the Welsh Government published a series of Patient Information Leaflets on the use of the Mental Health Act 1983. (See under Westminster Parliament above for information about the new Mental Health Bill introduced on 6th November 2024, which, if passed, will introduce significant changes to the 1983 Act, especially around patient rights and autonomy.)
Nuffield Trust
In summary the briefing states that decades of inaction have left adult social care with major issues, including high personal costs and a lack of support for many, leading to distress for individuals and their families. The situation is worsening, with 400,000 people awaiting assessments, local authority budget overspends, and over 100,000 vacant care positions. Partial solutions, like raising wages without stable funding, are inadequate; comprehensive reform is needed.
Nuffield recommend that the government should start immediately by committing to stable, multi-year funding for local councils, covering budget gaps and fair wages for workers, as pledged in the Labour Party Manifesto. Social care must be seen as essential national infrastructure, requiring an urgent reform plan. This should include a phased approach to create a fair cost-sharing model between individuals and the state, with eligibility consistency. Over time, a fair pay scale for care workers and a national fee schedule could help stabilize the sector and improve services, as seen in other countries, notably Germany and Japan.
See below for current call for evidence from Westminster Parliament on this important issue.
Open Consultations and Inquiries
NB Check the time deadline for any inquiry you are interested in, as for some it is midnight on the closing date and for others it is earlier.
The Government are consulting with the public and organisations on how to build a health sevice fit for the future. The responses received will form the new 10-Year Health Plan.
Press Release
House of Commons, Health and Social Care Committee
To inform its inquiry, the Committee is now accepting written evidence submissions that respond to the following questions by 11 December 2024.
- How much is inaction on adult social care reform costing the NHS and local authorities, and what impact does this have on patients and the public?
- What NHS and local authority service reforms are not happening as a result of adult social care pressures, and what benefits are patients and the public missing out on?
- What is the cost of inaction to individuals and how might people’s lives change with action on adult social care reform?
- Where in the system is the cost of inaction on adult social care reform being borne the most?
- What contribution does adult social care make to the economy and HM Treasury and how might this change with action on reform?
- To what extent are the costs of inaction on adult social care reform considered by the Government when evaluating policies, including within the Budget and Spending Reviews? How should these costs be assessed and evaluated?
Scottish Parliament
EASY READ VERSION
The purpose of this consultation is to seek views on the need for a universal definition of ‘care experience’ and what the potential impacts of this could be. This consultation is open until 8th January 2025.
Welsh Government
Welsh Government are seeking views on the parameters of practice for the registered nursing associate role. The intention is to distinguish it from the role of the registered nurse.
The aim of the consultation is to:
- determine the elements of the registered nurse role which cannot be delegated to the registered nursing associate
- determine the differences between the roles of the registered nurses and the registered nursing associate
- determine the parameters of practice for the registered nursing associate role in Wales.
This Consultation closes on 11th December 2024.
Consultation Paper
Summary
EASY READ CONSULTATION SUMMARY
EASY READ response form
LARGE PRINT SUMMARY
The Commission is seeking views from young people, families, local authorities and social workers, and anyone else with an interest in or awareness of the area. The consultation is part of a review of the legal framework covering disabled children’s access to social care, into to ensure that is fairer, simpler and more up to date.
“Disabled children’s social care law” is the body of legal rules covering:
- whether a disabled child can get help from social services to meet their needs;
- what help they can get; and
The closing date for the Consultation is 20th January 2025
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, Policy and Ethics Update will be published in February 2025. 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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