Leaders’ Briefing
Keeping you up to date on sector news and our work
Key updates
UK-wide
Welfare Reform
The Universal Credit (UC) and Personal Independence Payment (PIP) Bill is set to receive Royal Assent having pass through both Houses.
The bill was introduced to reform key aspects of the welfare system, and as such proposed changes to UC rates and PIP eligibility criteria. However, prior to the vote at second reading, and following significant criticism from MPs, ministers made several concessions and amended the Bill. These included:
- announcing that a co-produced review of the PIP assessment process will be conducted and led by Minister of State for Social Security and Disability, Sir Stephen Timms MP,
- amending the Bill to ensure the new eligibility requirements for PIP will only apply to new claimants and will not come into force until the PIP assessment review has concluded,
- ensuring that all existing recipients of the UC health element and new claimants who meet the government’s severe conditions criteria or qualify under the special rules for end of life will see their UC allowances rise at least in line with inflation every year from 2026/27 to 2029/30.
England and Wales
Terminally Ill Adults (End of Life) Bill
With the House of Lords set to begin scrutinising the Terminally Ill Adults (End of Life) Bill in September, we have updated our briefing for peers. This briefing outlines our position on assisted dying and sets out a series of amendments that we are encouraging peers to table and support.
While the bill’s focus may be on adults, the implications it would have for seriously ill children and young people, as well as their families and the professionals who support them cannot be overlooked.
Our proposed amendments seek to ensure that robust safeguards are incorporated into the text of the bill. In particular, they aim to ensure that families and professionals are equipped with the skills, knowledge and guidance they will need to hold difficult conversations about the choices available at the end of a young adult’s life if an assisted death was available.
You can access our updated briefing here.
England
£75 million of capital funding released for hospices
In July, the government released £75 million in capital funding for hospices across England. This forms part of the £100 million investment announced in December 2024, following an initial £25 million allocation made available in February.
As capital funding, the investment has been released to modernise facilities and deliver upgrades, including separate family rooms, solar panels to reduce energy costs, and communal lounges.
You can read the full press release here.
Call for evidence: LGBT+ health evidence review
In April 2025, the Secretary of State for Health and Social Care commissioned NHS England to undertake an LGBT+ health evidence review. The goal is to:
- better understand LGBT+ healthcare needs,
- provide expert insight and recommendations,
- build a foundation for future action on health inequalities.
Having been launched in July, a call for evidence has now been launched and will remain open until Sunday 31 August. More information about the call for evidence and the review can be found here.
Following this call for evidence, a final report and set of recommendations will be prepared for the Secretary of State for Health and Social Care, with publication expected in December 2025.
Extra £18 million injected into councils in England to roll out children’s social care reforms that prioritise earlier intervention
The UK Government has announced that it will spend an extra £18 million to implement early intervention child protection reforms to councils in England.
The reforms include the roll out of Family Group Decision Making. An approach to involve extended family members in helping keep children at home rather than in care. They also include investing in thousands more family help workers to provide earlier support for families experiencing challenges.
Ministers say that they are progressing with work to test the NHS number as a unique identifier for all children to help join up data together across health, education and police services to detect concerns about children before they escalate. A pilot between Wigan Council and NHS England is live and is testing this approach. You can read more here.
Grief education incorporated into the national English curriculum for 2026
For the first time, the Department for Education’s revised RHSE guidance, published in July 2025, will formally introduce grief and bereavement education into the curriculum. From September 2026, the new curriculum will cover:
- Different ways people grieve,
- How to support peers experiencing loss,
- Where to seek help,
- Cultural perspectives on death and mourning.
The Childhood Bereavement Network has been campaigning for grief education for 20 years, and this news comes as there has been a subtle and but significant shift in the way that society recognises grief and talks more fluently around death, dying and bereavement.
Northern Ireland
Still time to respond to the Baby Loss Certificate Scheme public consultation
In June, Finance Minister John O’Dowd and Health Minister Mike Nesbitt launched a public consultation seeking views on the proposed Baby Loss Certificate Scheme.
Part of the Deaths, Still-Births and Baby Loss Bill, the scheme would offer certificates to parents who experienced the loss of a baby before 24 weeks of pregnancy.
Open until 12 September 2025, there is still time to respond to the consultation. The consultation documents and more information can be found on the Department of Finance website here.
Scotland
Additional funding for independent hospices in Scotland
The Scottish Government have published the new Population Health Framework outlining the Government and COSLA’s long-term collective approach to improving Scotland’s health and reducing health inequalities for the next decade.
Overall, the Framework adopts a prevention-focused approach seeking to improve life expectancy and reduce the life expectancy gap between the most deprived areas and the national average by 2035.
The Framework is based on five key interconnected prevention drivers of health and wellbeing:
- Prevention Focused System
- Social and Economic Factors
- Places and Communities
- Enabling Healthy Living
- Equitable Access to Health and Care
Across these drivers, the Framework sets out a series of initial actions, including the following:
- Investing in preventative care and making systems more accountable.
- Supporting early child development and reducing inequalities.
- Strengthening community services and voluntary sector support.
- Promoting healthy environments, including housing, nutrition, and digital wellbeing.
- Ensuring fair access to healthcare, screening, and immunisation.
You can access the full Framework here.
Together we support
See the latest Leaders’ Briefing bulletin for updates.
Together we unite
See the latest Leaders’ Briefing bulletin for updates.
Together we campaign
No Time Too Soon campaign
As set out in James’ recent email, this update outlines our plans to campaign with you on the future of NHS funding for children’s hospices in England this autumn.
The email includes some options (also set out in the update paper) for what we could achieve if we were able to create a pooled campaign budget funded by contributions from children’s hospices. We would like to gauge your willingness to invest in such a pot, and, if you would be willing to, how you would like us to prioritise any joint funding that we are able to raise.
I would therefore be very grateful if you could please complete this short survey by 9am on Friday (29 August).
Our parliamentary engagement and upcoming plans
As part of our new campaign, we have written to all MPs in England and peers to share the ‘Overstretched and Underfunded’ report and to request their support in protecting, maintaining, and increasing ringfenced NHS funding for children’s hospices.
Since reaching out, we’ve received many positive responses. These include offers to meet, commitments to table parliamentary questions, and confirmation of a hospice visit with Stuart Andrew MP, the new Shadow Secretary of State for Health and Social Care.
We are also continuing to progress with our plans for party conference season. This year, we are working with Hospice UK, Marie Curie, and Sue Ryder to host fringe events at the Labour, Conservative, and Liberal Democrat conferences. These events will provide us with another opportunity to highlight the urgent need for a long-term, sustainable funding solution for children’s hospices.
In addition, planning is underway for the next APPG for Children Who Need Palliative Care event. We’re currently finalising the room booking for Tuesday 18 November, 10am–3pm, which will include a drop-in session for MPs and peers, and a roundtable discussion from 2pm–3pm.
Like last year, we hope to make this a children’s hospice lobby day and will therefore be encouraging hospices to arrange meetings with their local MPs in Westminster on the same day. However, for now, all we ask is that children’s hospices hold the date in their calendars. Further details, including template letters to invite MPs, will be shared in September.
Disabled Children’s Partnership launches new Fight for Ordinary campaign
As the UK Government prepares to publish its SEND white paper in the autumn, the Disabled Children’s Partnership (DCP) has launched the Fight for Ordinary campaign. The campaign sets a positive vision for reform while drawing clear red lines to protect existing legal rights for children with special educational needs and disabilities (SEND).
Specifically, the campaign is calling for:
- Statutory support for all children with SEND, with or without EHCPs.
- Proper funding, training, and accountability across education and health services.
- A system that supports inclusion, early intervention, and avoids unnecessary battles for families.
As steering group members of the DCP, we’re proud to support the Fight for Ordinary campaign and encourage the public to write to their MP in support.
If you haven’t yet taken part in the write to your MP action, you can do so here.