The latest policy information for families
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Thank you for supporting our ‘Short Lives Can’t Wait’ campaign
In March 2024, we launched our new ‘Short Lives Can’t Wait’ campaign highlighting the postcode lottery in access to children’s palliative and end of life care and asking people to provide their support by signing our open letter to the Prime Minister.
Our report has been covered by ITV national news. You can access the story here.
Our campaign and supporting research show that seriously ill children and their families aren’t getting the care they need, because of where they live.
Of particular concern is children and families’ access to 24-hour end of life care at home, provided by nurses and supported by advice from consultant paediatricians who have completed sub-speciality training in paediatric palliative medicine.
We have found that only a third of local areas (30%) in England are meeting the required standard for 24/7 end of life care for children and young people at home. This 24/7 end of life care at home standard is not met at all in Northern Ireland and only in a minority of areas in Scotland and Wales.
We believe this unjustified variance in care is being driven by workforce shortages, a lack of accountability among local NHS bodies and councils for the way in which they implement existing policy frameworks, and a huge funding gap. In England, we estimate the gap in NHS children’s palliative care funding across hospital, community and children’s hospice services will be £295 million in 2024/25.
Governments across the UK need to act now because short lives can’t wait.
You can sign the open letter to the UK Prime Minister, Rishi Sunak here.
You can read our full and summary reports here.
The All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care annual general meeting (AGM) and reception
During the month of March 2024, as secretariat to the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, we also organised a reception in the House of Commons.
With 99,000 seriously ill children and young people in the UK, this reception provided us with an opportunity to engage with MPs and Peers setting out the challenges confronting the children’s palliative care sector and the action that is needed from the UK Government.
Overall, the event was well-attended by parliamentarians, hospice representatives and professionals from the sector. The Minister of State for Social Care even attended to set out the action the UK Government is currently taking in this area.
From this reception, we managed to secure a number of positive actions from MPs. With many pledging their support to our Short Lives Can’t Wait campaign, several MPs also committed to taking parliamentary action to help raise awareness of the challenges currently being faced and to press the UK Government to act.
Spotlight on hospice funding in the UK Parliament
In April 2024, attention turned to the situation around hospice funding. This started with a debate, secured by Peter Gibson MP and Sally-Ann Hart MP in the House of Commons.
The debate saw a good turnout amongst MPs with many expressing serious concerns about the variance in local NHS spending on children’s hospices, the future of the NHS Children’s Hospice Grant beyond 2024/25 and the difficulties that increases in NHS pay settlements are continuing to have on hospices.
In responding to the debate and the points raised, the Minister for Social Care, Helen Whately MP, claimed she does not agree with calls for centralised funding given that ICBs were set up to understand the healthcare needs of local communities, to plan and commission services to meet those needs and, in so doing, to reduce health disparities. The Minister claimed that it is better to work on transparency and accountability of ICBs. To this end, she referenced that palliative and end of life care has been included in the list of topics to be discussed at regular performance meetings with ICBs.
On the calls for funding commitments beyond 2024/25, the Minister claimed this is not something she can commit to as it depends on a future spending review.
Following the debate, the Health and Social Care Select Committee help a topical session on hospice funding, at which Together for Short Lives were invited to give oral evidence.
The topical session followed the Committee’s recent inquiry and report on assisted dying and assisted suicide, which urged the government to commit to additional funding to guarantee support for hospices.
During the session, the panel asked about the funding landscape for hospices and palliative care services, the objectives of integrated care and the legal duty placed on ICBs, workforce challenges and the overall accountability of ICBs for the way in which they fund palliative care services.
In response to these questions, Together for Short Lives were able to raise the importance of the NHS Children’s Hospice Grant and the need for it to be confirmed for years beyond 2024/25, the huge variance in local NHS spending on children’s hospices and the workforce challenges currently being faced by children’s hospices. All in all, calling on the UK Government to review the way in which children’s palliative care is funded and fill the £295 million funding gap.
Spring Budget 2024
On 6 March 2024, Chancellor of the Exchequer, Jeremy Hunt, delivered the UK Government’s Spring Budget 2024 in the House of Commons.
Whilst the statement included some welcome news, we are concerned that this Budget failed to clarify the future of the NHS Children’s Hospice Grant, nor addresses how the wider funding gap in children’s palliative care is to be filled.
Of the welcome news that was announced, we are pleased to see the UK Government commit to providing an additional £4.2 billion of targeted funding to deliver the next phase of reform of public services. This includes £3.4 billion for the NHS to help deliver improvements for patients and staff across three areas:
1. Transforming access and services for patients, giving them more choice and the ability to manage and attend appointments virtually.
2. Transforming the use of data to reduce time spent on unproductive administrative tasks by NHS staff.
3. Updating fragmented and outdates IT systems across the NHS to reduce hours wasted by doctors.
Alongside this £3.4 billion in funding to reform the way the NHS works, measures introduced at Spring Budget will protect levels of funding for the NHS in England in real terms in 2024-25 by providing an extra £2.5 billion for 2024-25 meaning a total budget of £164.9 billion.
In addition to reconfirming the £500 million of new funding for councils to support the provision of adult and children’s social care, the UK Government also committed to providing an initial £105 million towards a wave of 15 new special free schools to create over 2,000 additional places across England.
Finally, to help households, the UK Government committed to providing an additional £500 million to enable the extension of the Household Support Fund (HSF) in England from April to September 2024. The UK Government also committed to removing the £90 administration fee connected to accessing a Debt Relief Order (DRO).
You can read our reaction to the Budget here.
House of Commons Health and Care Select Committee inquiry report on assisted dying and assisted suicide
In February 2024, the House of Commons Health and Care Select Committee published its inquiry report on assisted dying and assisted suicide (AD/AS).
The report aims to present a comprehensive and current body of evidence on the sensitive topic of AD/AS. The report therefore does not provide a definitive answer to questions asked in the original call for evidence, nor does it offer a resolution to the ongoing debate.
Part of the inquiry explored palliative and end of life care in England and Wales and the role this could play in negating some of the arguments for AD/AS. Here the committee did not see any indications of palliative and end of-life care deteriorating in quality or provision following the introduction of AD/AS. In fact, the inquiry found the introduction of AD/AS has been linked with an improvement in palliative care in several jurisdictions.
In relation to palliative and end of life care, the committee has made a series of specific conclusions and recommendations:
· Given the patchy access to palliative and end of life care across the UK, the Government must ensure universal coverage of services, including hospice care at home. This will help ensure that everyone is able to choose the type of support they need at the end of their life and that their advanced care plan is honoured where possible.
· There is a need for better data on the population within an ICB catchment area. This should be acquired by ICBs so they can fully understand the needs of the population, thereby enabling commissioners to support the provision of services more effectively.
· The committee calls on the Government to commit to an uplift of funding to guarantee that support will be provided to any hospice which requires funding assistance.
· The committee is pleased that the ONS in now attempting to monitor the rates of suicide for people with a terminal diagnosis, as this will facilitate scrutiny in the future and continue to act as a reminder that the support and care around people who are managing a terminal diagnosis must be improved.
· The committee has heard a lot of evidence around the importance of a “good death” for both the person managing their terminal diagnosis, and their loved ones. Suffering, pain and managing a terminal diagnosis will be a subjective experience, unique to the person experiencing them, and although there may be in the future, there is not currently a medical intervention available to manage every symptom or pain.
· The committee recommends that the Government commission research on how to better provide mental health support and guidance, and report back to Parliament.
· The Government must establish a national strategy for death literacy and support following a terminal diagnosis to help healthcare professionals to better support people and their loved ones.
We previously provided written evidence to the inquiry setting out the potential implications of AD/AS on children and young people – and the action we believe parliament should take to address them should it choose to legislate in this area. You can view our written evidence here.
You can read our reaction to the inquiry report here.
Martha’s Rule introduced in NHS hospitals from April 2024
About two thirds of NHS hospitals in England will be offered funding from April to introduce “Martha’s rule”, which will give seriously ill patients easy access to a second opinion if their condition worsens.
Under the new scheme, participating hospitals will receive government funding for posters and leaflets informing patients and their families that they can directly ask a team of critical-care medics for a “rapid review” of treatment.
The reviews will be carried out by a senior doctor or nurse from elsewhere in the building, who specialise in the care of patients who are deteriorating. Medics will also formally record families’ observations of a patient’s condition or behaviour.
A joint statement from the Nursing and Midwifery Council, General Medical Council and Care Quality Commission has since been issued expressing support for the implementation of Martha’s Rule by NHS England. The statement can be read here.
The official announcement from the Secretary of State for Health and Social Care can be read here.
Baby loss certificates for parents in England now available
In February 2024, The Department of Health and Social Care announced that baby loss certificates for parents in England who have experienced a loss of pregnancy before 24 weeks are now available for application.
This is a voluntary scheme for which there is no charge for parents to access.
It delivers on priorities set out in the Women’s Health Strategy for England and on recommendations from the Pregnancy Loss Review.
Health and Social Care Secretary Victoria Atkins said:
“Losing a baby can be a hugely traumatic event and the introduction of certificates to formally acknowledge the loss of life is a positive step towards better supporting women and parents affected.”
“I’d like to thank charities and campaigners for their continuous work in bringing awareness to baby loss and making the certificates launching possible.”
“Improving women’s health care and maternity support is a priority, and this demonstrates progress in delivering our Women’s Health Strategy and ensuring parents feel supported during this heart-breaking experience.”
The full announcement can be read here.
From a recent parliamentary question answered in the Welsh Parliament published here, we understand that whilst baby loss certificates are currently only available in England, the UK government plans to extend the eligibility criteria when it is able to do so.
Updated NICE Quality Standard: Transition from children’s to adults’ services
In December 2023, NICE published its updated version of the transition from children’s to adults’ services quality standard following feedback from stakeholders. This quality standard covers all young people (aged up to 25) using children’s health and social care services who are due to make the transition to adults’ services. Included within the updated version are two new quality statements, which we expressed our support for:
· Quality statement 2: Young people who will move from children’s to adults’ services have a co-ordinated transition plan.
· Quality statement 6: Young people who have moved from children’s to adults’ services but do not attend their initial meetings or appointments are contacted by adults’ services and given further opportunities to engage.
The updated standard (QS140) can be read here.
Causes of death to be scrutinised in revamp of death certificates
From September, medical examiners will 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 the person who died.
Welcoming these changes, Health Minister, Maria Caulfield said:
“Reforming death certification is a highly complex and sensitive process, so it was important for us to make sure we got these changes right.”
“At such a difficult time, it’s vital that bereaved families have full faith in how the death of their loved one is certified and have their voices heard if they are concerned in any way.”
“The measures I’m introducing today will ensure all deaths are reviewed and the bereaved are fully informed, making the system safer by improving protections against rare abuses.”
The full press release can be read here.
Northern Ireland Children’s Hospice funding situation
In February 2024, it was reported that due to a loss of government funding, the Northern Ireland Children’s Hospice would have to reduce its bed capacity from 7 beds for 7 nights to 6 beds for Monday to Friday and 3 beds for Saturday and Sunday.
Acting director Grace Stewart said, “This decision, led by the need to ensure the long-term sustainability of our service, will impact bed numbers and availability.”
Since then, the Health Minister, Robin Swann, has reinstated £85,000 in funding that had been cut from the Northern Ireland Children’s Hospice.
However, he acknowledged it will not be enough to prevent a reduction in some services at the facility.
This has led to a public petition on funding the Northern Ireland Children’s Hospice being presented to the assembly by Phillip Brett MLA. Gathering over 1,500 signatures, the petition called on the Department of Health to allocate additional funding to the Hospice so they can restore bed capacity and secure long-term stability.
The petition presentation can be watched here.
More recently, the Health Minister, Robin Swann announced a £70 million support package to help independent sector organisations deal with rising costs from the start of the new financial year, particularly forthcoming minimum wage increases. The £70 million funding has been made available for pay cost increases in:
· Independent Sector (IS) Nursing Homes.
· IS Residential Homes.
· Supported Living settings.
· Jointly Commissioned Supported Accommodation.
· IS Children’s Homes.
· IS Domiciliary Care.
· Self-Directed Support (SDS) and Direct Payment contracts.
· HSC contracts in Community & Voluntary and Hospice sectors.
The full announcement can be read here.
Scottish ministers reiterate commitment to new palliative care strategy
Responding to a question in the Scottish parliament on 3 January 2024, Jenni Minto (Minister for Public Health and Women’s Health) reiterated the Scottish government’s commitment to ensuring that everyone who needs it can access seamless, timely, and high-quality palliative care.
The minister also mentioned that a National Clinical Lead for Palliative and End of Life Care has been appointed to drive this work and will be supported by a Clinical and Practice Advisory Group and a wide-reaching Strategy Steering Group.
The Scottish Government aims to publish the draft strategy for consultation in Spring 2024.
The full question and answer can be found here.
Proposed assisted dying bill published in the Scottish Parliament
Liberal Democrat MSP Liam McArthur has introduced the Assisted Dying for Terminally Ill Adults aged 16 and over in Scotland Bill. This Bill proposes those with a terminal illness, who are eligible in Scotland, to be able to lawfully request, and be provided with, assistance by health professionals to end their own life.
To be eligible to receive assistance to end their own life a person must be:
· Aged 16 or older.
· Ordinarily resident in Scotland.
· Registered with a GP in Scotland.
· Have capacity to request assistance to end their life (the Bill uses standard definitions around capacity).
· Be terminally ill.
When requesting assistance to end their own life, the Bill states that the eligible person must first complete a declaration form that can be cancelled at any time.
A “co-ordinating” doctor must then “as soon as reasonably practical” carry out an assessment to confirm that the person is terminally ill, meets the other eligibility requirements and has made the declaration voluntarily. Assuming the person is assessed as meeting the eligibility requirements the first doctor must then refer the person to a second independent doctor who repeats the assessment.
It is proposed that there will then be a period of reflection for 14 days. However, if both doctors believe the person may die within the 14 day period) a minimum period for reflection of 48 hours applies. Once the period of reflection has passed, the person must then make a second declaration which must be signed by the ‘co-ordinating’ doctor confirming that the person is still eligible.
The Bill also covers issues around:
· Death certification.
· Conscientious objection.
· Criminal and civil liabilities for providing assistance.
· Offence of coercing or pressuring.
· Data and reporting.
· Review of the Act if enacted.
MSPs will debate the Bill in the autumn.
The bill has been published here.
Proposed Right to Palliative Care (Scotland) Bill launched
A proposal for a Members Bill for a right to palliative care has been launched, led by Miles Briggs MSP, with cross-party support from Bob Doris MSP and Rhoda Grant MSP.
A public consultation on the proposal is open until 4 June 2024. This consultation focuses on whether there should be a right to palliative care in Scotland, and what it should deliver. It is open to anyone to respond to, even if they are not in Scotland.
Consultations play an important part in ensuring that legislation is fit for purpose. They are designed to provide a range of views, highlighting potential problems, and suggesting improvements. Your response would be particularly helpful if you are:
• Someone living with a terminal illness and/or caring for someone living with a terminal illness – or you have recent experience of this.
• A professional involved in delivering palliative care or support to terminally ill people, and other health and social care professionals, in any sector.
• Part of an organisation working on issues relevant to how people may experience end of life, including health inequalities and inequities, poverty, carers and bereavement.
• A Human Rights organisation.
• Working in research or the academic sector.
• A body currently responsible for commissioning palliative care.
• A Royal College or other relevant professional body.
• A Trade union representing the workforce who support people with terminal illnesses and at the end of their lives.
There is more information on Scottish Parliament and Marie Curie websites, including a short guide to support you to respond to the consultation.
Move to Child Disability Payment complete for all children in Scotland
All disabled children and young people in Scotland who receive disability benefits will now be paid directly from Social Security Scotland. Those children and young people will also benefit from a review system different to that of the wider UK. It is said that this review system is one based on dignity, fairness and respect.
Around 47,000 children have transitioned to this system since its launch in 2021 with many families reporting their experience to be markedly better than under the UK system.
More information can be read here.
Funding boost from Welsh Government
As part of phase 3 of the Welsh Government’s end-of-life care review, an additional £770,000 has been provided to Wales’ two children’s hospices, Tŷ Hafan and Tŷ Gobaith. When broken down, this funding provides £229,684 for Tŷ Gobaith and £544,285 for Tŷ Hafan.
According to a joint statement issued in response to the additional funding by Tŷ Gobaith and Tŷ Hafan, these sums will enable both Tŷ Gobaith and Tŷ Hafan to almost record a balanced budget for the 2023/24 financial year. Without this funding, both children’s hospices would have run at a deficit, drawing on limited funds held in reserve.
While this funding is welcome, it does not enable Tŷ Gobaith or Tŷ Hafan to meet anything like the demand for the care they provide – there are over 3,000 children in Wales who have a life-shortening condition yet between Tŷ Gobaith and Tŷ Hafan we are only currently able to support just over 400 of them.
Furthermore, these payments are discretionary and one-off payments made at the very end of the financial year. There is still a real need for long-term sustainable funding so the hospices can plan longer term and reach many more seriously ill children and families in need of support.