As the year continues to progress, so too does the policy landscape surrounding children’s palliative care. Over the past few months, we have witnessed a wave of new developments that could impact both families caring for seriously ill children and professionals. In this roundup we’ll cover recent policy updates, key government consultations and ongoing advocacy efforts dedicated to ensuring seriously ill children and their families can access the care and support they need, when and where they need it.
Help shape the future of the NHS
Following Lord Darzi’s report on the state of the NHS in England, the Government have launched a consultation on a new 10-Year Plan, inviting the public to share their experiences and ideas for the future. This is a crucial opportunity for individuals, professionals, and organisations to directly influence the future of healthcare in England, especially for children and young people with life-limiting conditions.
As many will be aware, Lord Darzi’s report highlights many urgent issues. Since 2001 there has been a 250% increase in the number of children and young people with life-limiting and life-threatening conditions since 2001. Additionally, children face severe delays in accessing community and mental health services, with over 80% of the 50,000 individuals waiting more than a year for community services being children, and over 109,000 children enduring long waits for mental health support.
The Government’s consultation, hosted on the Change NHS platform, is therefore a opportunity to address these issues. Open until 2 December 2024 for organisations and early in the new year for the public and professionals, the Government is particularly keen to hear views on the three key shifts they hope to deliver:
- From hospital to community: The Government aims to develop new neighbourhood health centres, allowing patients to access a range of services—including family doctors, nurses, and mental health specialists—all under one roof.
- From analogue to digital: As part of modernising the NHS, the plan includes creating a single patient record accessible through the NHS App. This innovation is expected to streamline patient care, reduce wait times, and enhance safety by minimising medication errors.
- From sickness to prevention: The consultation will also explore preventive measures, using technology like smartwatches to help patients monitor their health conditions from home.
Earlier this year, we outlined concerns about workforce shortages, funding gaps, and a lack of accountability in local NHS bodies in our Short Lives Can’t Wait report. We will therefore be contributing to this consultation to ensure that children’s palliative care is part of the Government’s long-term strategy.
With the Government emphasising the importance of public input, we encourage everyone to take part—each response increases the likelihood of tangible action in children’s palliative care within the new NHS 10-Year Plan.
Commissioning children and young people’s palliative and end of life care
Under section 21 of the Health and Care Act 2022, integrated care boards (ICBs) have a legal duty to commission palliative and end of life care that meets the reasonable requirements of the people for whom it has responsibility.
To help ICBs meet this legal duty, we have recently launched a new resource in partnership with NHS England.
The website can help ICBs to understand:
- What children and young people’s palliative and end of life care is.
- Which children and young people may need it, and what the characteristics of this population are.
- What can be done to enable children and young people to receive high quality personalised palliative and end of life care and support.
You can tell us what you think of the resource here.
Assisted Dying in the UK and Scottish Parliaments
In July 2024, Lord Falconer introduced a Private Members’ Bill in the House of Lords to legalise Assisted Dying for Terminally Ill Adults in England and Wales.
More recently, Kim Leadbeater MP has introduced the Terminally Ill Adults (End of Life) Bill, which if passed will give terminally ill people in England and Wales the right to choose to end their life. This new Bill, set to be debated on 29 November, will give MPs an opportunity to debate this issue for the first time since 2015.
Whilst there are many similarities between the two Bills, there are also a number of differences including the addition of a first period of reflection, and the detailed requirements that must be satisfied before the High Court can make a declaration.
We have produced a briefing setting out what we believe the key considerations are for seriously ill young people that MPs need to take account of when debating and scrutinising the Terminally Ill Adults (End of Life) Bill.
We encourage MPs to consider these implications when debating and scrutinising Kim Leadbeater’s Bill in the House of Commons.
You can read our briefing here.
In Scotland, Liberal Democrat MSP Liam McArthur has introduced the Assisted Dying for Terminally Ill Adults Bill. This Bill proposes those with a terminal illness, aged 16 and over, who are eligible in Scotland, to be able to lawfully request, and be provided with, assistance by health professionals to end their own life.
Following the Bill’s introduction, the Health, Social Care and Sport Committee opened a call for evidence on the Bill.
You can read our response to the call for evidence here.
The Law Commission’s review of children’s social care law
The Law Commission have published a consultation paper on whether the current social care law meets the needs of disabled children and their families.
The review aims to make the law fairer, simpler, and more up-to-date. It covers key issues such as what support disabled children can receive, how it’s accessed, and whether the law reflects modern understandings of disabilities like autism.
The consultation seeks input from a broad range of stakeholders, asking whether a new legal framework for disabled children’s social care is needed, whether national eligibility criteria should be introduced, and how “disability” should be defined.
The consultation will run until 20 January 2025. The Disabled Children’s Partnership, which we are members of, will be working with the Law Commission to help parents, young people and others share their views.
You can read the consultation document and give your views here.
Baby Loss Certificates
Baroness Meron, Parliamentary Under-Secretary of State for Patient Safety, Women’s Health, and Mental Health, recently announced an extension to the Baby Loss Certificate Service.
This voluntary scheme, which allows parents to record and receive recognition of a pre-24-week pregnancy or baby loss, has been extended to cover all historical and future losses, with no eligibility date limit. Previously it was only available for losses since 1 September.
This service is completely optional meaning parents can decide how they want to manage this difficult time.
Similarly, in Northern Ireland, Finance Minister Dr. Caoimhe Archibald and Health Minister Mike Nesbitt have issued a joint message of support during Baby Loss Awareness Week (9-15 October), reaffirming their commitment to implementing a Baby Loss Certificate Scheme for parents who experience a pregnancy loss before 24 weeks.
Minister Archibald has confirmed that legislation will be introduced to enable this.
Statutory Medical Examiner System now in force
As of 9 September 2024, the statutory medical examiner system is now in force. As a result, medical examiners will now look at the cause of death in all cases that have not been referred to the coroner in a move designed to help strengthen safeguards and prevent criminal activity.
They will also consult with families, or representatives of the deceased, providing an opportunity for them to raise questions or concerns with a senior doctor not involved in the care of their loved one who has died.
Cases such as those involving Harold Shipman and Lucy Letby highlighted the need for an extra layer of scrutiny. The widely welcomed reforms to the system will provide greater transparency to the bereaved and help protect the public.
Do check with your own Trust/Medical Examiner on their local practices and requirements in response to these statutory reforms. Causes of death to be scrutinised in revamp of death certificates – GOV.UK (www.gov.uk)
Updated guidance has been published. This guidance is essential for all medical practitioners and covers:
- Who can complete a Medical Certificate of Cause of Death (MCCD).
- The role of medical examiners in scrutinising non-coronial deaths.
- When to refer a death to the coroner.
- How to accurately complete each section of the MCCD, ensuring proper documentation.
An MCCD is required to register all non-coronial deaths, except in the case of stillbirths.
Scotland Palliative Care Strategy consultation
The Scottish Government have published its draft palliative care strategy and have launched a consultation for views that is open until 10 January 2025.
The strategy, titled ‘Palliative Care Matters for All’, aims to ensure that by 2030, children and adults have more equitable access to well-coordinated, timely and high-quality palliative care, and that Scotland is a place where families and communities support each other and talk more openly about planning ahead.
Some key aspects of the strategy include:
- Holistic approach: The strategy emphasises the importance of comprehensive care that addresses not only physical symptoms but also mental, social, and spiritual needs. This approach aims to relieve suffering and improve the quality of life for patients and their families.
- Inclusive engagement: The development of the strategy involved extensive consultation with various groups, including patients, family members, caregivers, and health professionals. This engagement highlighted the diverse perspectives on palliative care and the necessity for tailored support.
- Early access: The strategy advocates for the early introduction of palliative care, ideally at the time of diagnosis, to ensure patients receive the necessary support to manage their conditions and make informed decisions.
- Public awareness and understanding: A significant focus is on improving public understanding of palliative care, addressing misconceptions that often associate it solely with end-of-life care. The strategy calls for clear communication and accessible information to help individuals recognise when and how to seek palliative care.
- Collaboration across services: The strategy encourages a coordinated approach involving various sectors, including healthcare, social care, and voluntary organisations, to deliver effective palliative care. It emphasises the importance of good communication and shared responsibilities among professionals.
- Continuous support: Ongoing support for families and caregivers, even after the death of a loved one, is highlighted as essential to the palliative care experience.
Overall, Scotland’s Palliative Care Matters for All strategy aims to create a more integrated, patient-centred palliative care system that is responsive to the needs of individuals and their families.