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Summer policy roundup for families 2023

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The latest policy information for families.

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Together for Short Lives has launched a campaign to protect and extend the Children’s Hospice Grant as a ringfenced fund directly distributed by NHS England beyond 2023/24.

As a part of our campaign, we hosted a Children’s Hospice Week lobby day in Parliament on Tuesday 20 June. This included an All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care drop-in and roundtable meeting for MPs and peers. 29 MPs attended, with many offering to write to ministers or table parliamentary questions. We briefed them on the key findings of our new children’s hospice funding report, and most stopped for conversations and photographs.

We also shared a Early Day Motion on the future of the grant – 15 MPs have signed this already.

Britt, a parent who uses Shooting Star Children’s Hospices and Liam, a young person who uses Claire House Children’s Hospice both attended the lobby day. they spoke powerfully during the roundtable and had a number of conversations with MPs. Colleagues from those hospices, in addition to those from Chestnut Tree House, Helen & Douglas House, Julia’s House and Naomi House and Jacksplace also joined us.

New SEND improvement plan in England

The UK Department for Education’s (DfE) new special educational needs and disabilities (SEND) improvement plan has a focus on making sure mainstream schools have the resources they need to help children access what they need.

The DfE are set to work with key individuals to deliver a standard education, health, and care plan (EHCP) template, with supporting processes and guidance from 2025. In addition, the national system will provide clarity on the resources available to deliver the right provision, for example, by ensuring that the new SEND and Alternative Provision National Standards are clear on the budgets used.

The national standards outlined in the improvement plan will place a greater emphasis on the role mainstream settings play in providing quality first teaching and evidence-based SEN support. In addition, the newly SEND, Alternative Provision practice guides for frontline professionals and an amended SEND Code of Practice should help set these standards.

According to the plan, the Department for Education (DfE) will increase core school funding by £3.5 billion in 2023-24, of which almost £1 billion will go towards high needs. Moreover, DfE will fund up to 5,000 early years staff to gain an accredited Level 3 early years SENCo qualification to support the early years sector, with training, running until August 2024. In partnership with NHS England, as part of their £70 million Change Programme, DfE will pioneer innovative practice through running Early Language and Support for Every Child (ELSEC) pathfinder to improve access to speech and language therapy for those who need it.

Special benefits rules for terminal illness

These are rules that provide people nearing the end of life with faster and easier access to some benefits. On 3 April 2023, improvements to these rules were made allowing individuals who are likely to have less than 12 months to live, the ability to claim PIP, DLA, AA, UC, and ESA via these special rules. You can find out more on if you’re eligible by contacting your medical professional, this can include GPs, hospital doctors and a registered nurse. If eligible, you can ask them to fill out the SR1 form. They will send this form to the Department for Work and Pensions (DWP) to support your benefit application, or you can send it yourself. The address is on the form. There is further information on the government website.

For further information you can contact the following helplines:

· Citizens Advice has trained advisers you can speak to and provides information on your rights, including benefits, housing, employment, debt, consumer and legal issues. Search the site for your nearest bureau in England, Wales, Scotland and Northern Ireland.

· Turn2us has a search function to find benefits advisers in your area, and provides people with financial support and information on benefits and grants.

Hewitt Review Published

The Rt Hon Patricia Hewitt MP was commissioned to lead an independent review of integrated care systems back in November 2022. On 4 April 2023, the Department for Health and Social Care published the Hewitt Review. The review identified six key principles, that are set to help DHSC create the context in which ICSs can deliver their statutory responsibilities. Each ICS has an integrated care board (ICB), a statutory organisation responsible for developing a plan for meeting the health needs of the population, managing the NHS budget, and arranging for the provision of health services in the ICS area. ICBs include representatives from local authorities, primary care and NHS trusts and foundation trusts.

Six key principles:

1. Collaboration within and between systems and national bodies

2. A limited number of shared priorities

3. Allowing local leaders, the space and time to lead

4. Right Support

5. Balancing freedom with accountability

6. Enabling access to timely, transparent, and high-quality data

The review also identified four core purposes to deliver on this:

1. Improve outcomes in population health and healthcare

2. Tackle inequalities in outcomes, experience, and access

3. Enhance productivity and value for money

4. Support broader social and economic development

Government holds back on care funding

On 4 April, the government set out its next steps to support social care. In their plan it became clear that the government has halved promised funding for the social care workforce from £500 million to £250 million. This funding was allocated by the government to initiate a new care workforce pathway and funding for hundreds of thousands of training places, including a new Care Certificate qualification – aiming to increase opportunities for career progression and development. This change raised a lot of concern amongst key social care providers in the sector.

According to the BBC, about one in 10 posts are vacant with staffing shortages rising by more than 50% in the past year. The presence of sustainable and well-funded social care resources, would help ease the pressure on hospitals and health care providers. The whole health and social care system relies on joined up, suitable resourced staffing, without it patients’ lives are unfortunately put at risk.

MP visit to Julia’s House Children’s Hospice

On 30 April, Liberal Democrat Leader Sir Ed Davey visited Julia’s House Children’s Hospice. Sir Ed heard about the positive impact that short breaks for respite provided by children’s hospices have on children and families, in addition to their wider economic impact. He recognised the need for more health care workers, therefore determined to be the voice of carers. You can also read the full news coverage.

Scottish government urged to take Cost of Living action

In a recent debate on ‘Supporting Scotland with Cost of Living and reducing Child Poverty’, Together for Short Lives and CHAS was mentioned by Miles Briggs MSP. Briggs called on the Scottish government to act on the additional energy bills that are faced by the families of children with life-shortening conditions and people with terminal conditions in Scotland.

Briggs highlighted that children with life-limiting conditions are 50 per cent more likely to be living in the most deprived parts of Scotland. He also referred to Together for Short Lives’ Cost of Living findings, quoting that families with seriously ill and disabled children pay double what an average household pays for their energy bills due to the running of life-saving equipment and other vital equipment to a hospital-at-home service. He also highlighted CHAS’s call on the government to do more to provide direct and targeted support to families, for a scheme to be developed to enable families to recoup some of the running costs of life-saving energy-intensive equipment. You can also read the full debate.

NHSE children’s and young people’s health policy update

NHSE recently published new guidance to help ICBs meet their duty in the Health and Care Act 2022 to identify members of their boards to be explicitly responsible for children and young people.

The NHS Long Term Plan set out the vision for an NHS focused improved outcomes for children and young people. Each ICB should receive funding from the Children and Young People’s Transformation Programme to deliver the commitments in the NHS Long Term Plan. The guidance sets out that the executive lead should have a line of sight of delivery of all children and young people commitments led by the ICB, such as mental health, safeguarding, learning disability and autism, health, and injustice, SEND, neonatal care. You can also read the full guidance.

Up to 12 weeks of extra leave and pay for parents

The Neonatal Care (Leave and Pay) Bill, introduced by Stuart C McDonald MP, reached Royal Assent on 24 May and is now law. The Bill aims to provide additional leave and pay for employees with responsibility for children receiving neonatal care. Parents who meet the qualifying criteria, could be offered up to 12 weeks extra leave and pay.

Qualifying criteria:

· You meet the minimum service and earning requirements

· You are an employee

· Your baby is cared for in a health setting for more than 1 week before they reach 28 days of life

It is important to note that whilst, this has now become law, the implementation of the Neonatal Care (Leave and Pay) Act is estimated to be in April 2025. Therefore, until then you will not be able to claim.

New law to protect Carer’s rights in the workplace

The Carer’s Leave Act 2023 received Royal Assent in May and it will be implemented in 2024. This new legislation will introduce a new and flexible entitlement to one week’s unpaid leave per year for employees who are providing or arranging care for a relative. It will also protect employees who wish to take leave for planned or unplanned caring commitments. This is a significant change, offering the same employment protections to employees taking this leave that are associated with other forms of family-related leave, meaning they will be protected from dismissal or any detriment because of having taken time off. You can also read more about this new law.

APPG AGM March 2023

We hosted the annual general meeting (AGM) of the APPG for Children Who Need Palliative Care on Tuesday 7 March at Westminster. The AGM marked the launch of Together for Short Lives’ brand new 10-year strategy Making Every Moment Count.

During the meeting, Manraj Sanghera, shared her son Arjun’s experience of receiving 24/7 palliative and end-of-life care.

The following MPs and Peers attended the drop-in:

· Siobhain McDonagh MP

· Peter Dowd MP

· Alex Sobel MP

· Lord Balfe

· Baroness Finlay

Lord Balfe was elected as co-chair of the APPG and Baroness Finlay was elected as Vice-Chair.



Campaigners outside parliament

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