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Winter policy roundup for families 2023

News and comment

The latest policy information for families.

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Thank you for campaigning to #savethegrant

Following a campaign to save the grant NHS England (NHSE) Children’s Hospice Grant by Together for Short Lives, families, children’s hospices in England and MPs, Minister of State for Social Care Helen Whately has confirmed that NHSE will be renewing £25 million of funding for children’s hospices in 2024/25. This is a good outcome and follows the verbal commitment she gave to the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care meeting during Children’s Hospice Week.

However, neither the minster nor NHSE officials have publicly confirmed how the money will be distributed. We have continued to engage with officials about this and are expecting NHSE to write to children’s hospices.

Thank you for your support on our #savethegrant campaign, which has helped secure parliamentary activity since Children’s Hospice Week and nearly 5,000 signatures on our petition to the Prime Minister.

Watch this space for news on the grant as we get it.

Martha’s rule

In September 2023, Secretary of State for Health and Social Care Steve Barclay said that the UK government was exploring introducing a new rule which would allow patients or their families to request a clinical review of their case from a doctor or nurse if their condition was deteriorating or not improving as expected. To be known as ‘Martha’s rule’ after the case of Martha Mills, who died of sepsis after clinicians dismissed extensive bleeding as a normal side effect of an infection, the rule would be similar to a system in Queensland, Australia, known as ‘Ryan’s rule’. The government said the rule had saved lives in Queensland, and the NHS was looking into whether similar measures could improve patient safety in the UK.

New Nuffield report recommends help to resolve care disagreements

We have welcomed a new report that recommends that more help is given to parents and professionals to prevent and resolve disagreements in the care of critically ill children. Now we want to see ministers, the NHS and others work together to implement the report’s recommendations.

The report Disagreements in the Care of Critically Ill Children was commissioned by the UK Department of Health and Social Care and written by the Nuffield Council on Bioethics (NCoB), and was prompted by a number high-profile disagreements between parents of critically ill children and the professionals treating them. It followed a commitment under the Health and Care Act 2022 to undertake a review of the causes of these disagreements.

NCoB has found that these disagreements are almost always about how suitable and appropriate care and treatment for a child is, but that there is no single or dominant reason for why simple differences of opinion escalate. NCoB concludes that they often stem from:

  • People’s pre-existing experiences and perspectives
  • Questions arising directly relating to a child’s care and treatment
  • Communication challenges
  • Mismatched expectations
  • A lack of information available to parents.

NCoB has made a total of 16 recommendations for the UK Government, NHS organisations, the Royal College of Paediatrics of Child Health (RCPCH) and others. A key call to action is for organisations to work together to produce accessible information for families about the role and potential benefits of palliative care – and to ensure that all healthcare professionals working with children are aware of and have access to it.

Review of disabled children’s social care law in England

Following a request from the Department for Education, the Law Commission has begun a review of the law on disabled children’s social care in England. The law in this area is currently governed by a patchwork of legislation, some of which dates back more than 50 years. This has contributed to variation in the amount and quality of support provided by local authorities, and unnecessarily complicated routes to accessing support for the parents and care givers of disabled children.

The Law Commission project was recommended in the 2022 Independent Review of Children’s Social Care, which heard from families of disabled children struggling to understand what support they were entitled to and how to access it. The project will play a role in the UK Government’s ongoing programme for the reform of children’s social care and the system for supporting children and young people with special educational needs and disabilities.

The overarching aim of the review will be to simplify and strengthen the law, ensuring that the system is fair and works for children, parents and other care givers, and local authorities. The review will focus on the provision of support and services in family-based care.

The Law Commission has started preliminary work on this project, with the aim of publishing a consultation in Spring 2024. The Commission will be engaging with a range of people and organisations with experience of social care for disabled children in the coming months to inform this process. In particular, the Commission hopes to engage with parents and carers through a combination of online discussion sessions and surveys to better understand the current barriers to accessing social care.

The Law Commission is a statutory, independent body. You can access more information about the commission here and the review, including the terms of reference, here.

Major conditions strategy approach for England includes palliative care, children and rare conditions

The UK Department of Health and Social Care (DHSC) has published a case for change and strategic framework to inform its new major conditions strategy.

The strategy is one of DHSC’s key health policy initiatives; ministers hope that it will set out a strong and coherent policy agenda that sets out a shift to integrated, whole-person care, building on measures that it has already taken forward through the NHS Long Term Plan.

Through this all-age strategy, ministers aim to improve outcomes for people in England with these conditions over the next five years. DHSC cites evidence that 16% of children up to 15 years old had one or more longstanding condition in 2017 to 2018, increasing to one in 4 for those aged 16 to 24.

Despite the focus on the most prevalent conditions, the scope of the strategy is actually wider: DSHC state that they will also consider how they can ensure that systems are in place to identify and treat conditions which are rare in each age group. It cites cancer as an example which is rare during childhood, adolescence and young adulthood and which creates challenges starting with diagnosis. DHSC says it will explore how it can best support services and people experiencing rare forms of cancer.

DSHC also state the following on children with cancer:

  • Ministers expect support to be tailored to children’s specific needs.
  • NHSE has introduced the under-16 Cancer Patient Experience Survey for patients and their parents or carers so that DHSC can learn from their experience.
  • There is a clear opportunity to deliver improvements to support people while children are in hospital, and NHSE is working with DHSC on initiatives to ensure that carers are fed, and children can access play facilities and therapy.

Palliative and end of life care is also referred to several times in the framework. DHSC has stated the following:

  • High-quality palliative and end of life care ought to include the opportunity for individuals to discuss their wishes and preferences so that these can be taken fully into account in the provision of their future care (advance care planning).
  • As part of this strategy, DHSC will explore how best it can use ACP for those with a major condition or multiple conditions.
  • It acknowledges evidence that highlights inequalities in access to palliative and end of life care.

We update families on the progress of the strategy – and what it could mean for you in practice – in future roundups.

A manifesto for palliative and end of life care

We have developed a joint manifesto for palliative and end of life care in partnership with Hospice UK, Marie Curie, the National Bereavement Alliance and Sue Ryder.

Ahead of the next UK general election, we call upon all political parties and candidates to commit to policies aimed at making sure everyone affected by dying, death and bereavement gets the best possible care and support.

We’re proud to work jointly with friends and partners across our sector to ensure that politicians from all parties are aware of the challenges we are facing in providing high quality end of life care in the UK. As representatives and providers of end of life care and bereavement support in communities across the country, we have worked together to identify solutions that will make sure families who need us are well supported long into the future.

Palliative and end of life care is a vital part of a healthcare system, and we look forward to working with NHS and government partners to achieve our five goals:

  1. Deliver a new funding solution for hospices and palliative and end of life care to end the postcode lottery in access
  2. Introduce a national delivery plan for palliative and end of life care in every nation to support delivery of local services
  3. Guarantee that palliative and end of life care services meet each individual’s needs, including those of people dying at home
  4. Act to ensure that nobody dies in poverty and tackle inequalities in palliative and end of life care
  5. Improve support for families and carers of people with a terminal illness.

Party conference roundup

The recent Autumn conference season gave the strongest hints yet as to what the parties that will contest the next general election are likely to commit to in their manifestos.

For Labour, Shadow Health and Social Care Secretary Wes Streeting promised:

  • an extra £1.1bn to help the NHS beat the backlog, with extra clinics at evenings and weekends
  • faster treatment for patients.
  • extra pay for NHS staff
  • a ‘neighbourhood health service’ that pioneers cutting edge treatment and technology, preventing ill-health, not just treating it
  • mental health support in every school and hubs in every community
  • a 10-year plan for a National Care Service

Conservative Secretary of State for Health and Social Care Steve Barclay:

  • stated that he wanted to give patients more choice and control over their care
  • announced a “new £30 million fund to speed up the adoption of tech in the NHS
  • citing the NHS workforce strategy, he committed to shorter degrees, new roles and more ways onto the NHS career ladder for professionals
  • committed to cutting down on wasted government spending, focussing on patient outcomes and prioritising frontline resources.

Liberal Democrat leader Ed Davey focussed on his aim to:

  • reduce cancer waiting times,
  • increase the number of GPs, so that everyone can get an appointment within seven days, or twenty-four hours if it’s urgent
  • increase investment in the latest technology from MRI scanners to radiotherapy machines
  • increase the number of carers
  • develop a new plan for social care and family care.

For the SNP, Scottish First Minister Humza Yousaf committed to £100 million to cut waiting lists in the NHS in Scotland. He stated this would maximise capacity, build greater resilience into the system and deliver year-on-year reductions in the number of patients who have waited too long. He stated that this would also reduce waiting lists by an estimated 100,000 patients by 2026.

New guidance on deprivation of liberty orders (DoLs) in unregistered settings

Ofsted have published new guidance for providers, social workers and placement commissioners on placing children, subject to a deprivation of liberty order (DoL), in unregistered settings.

A DoL order makes it lawful for a child to be deprived of their liberty. The court authorises the order and any restrictions are set out clearly in the order.

Children of any age, subject to a DoL, generally require high levels of care and supervision. This means that a child subject to a DoL will likely be placed in a children’s home or a care home service.

Updated quality standard on transition from children’s to adults’ services expected in December

We have responded on behalf of our members to the National Institute for Health and Care Excellence’s (NICE) consultation on its proposed updates to the quality standard on transition from children’s to adults’ services. NICE have proposed two new quality statements, which we have 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.

NICE expect the updated standard to be published on 14 December 2023.

You can read the existing standard (QS140), which was published in 2016, here. NICE quality standards apply in England, Northern Ireland and Wales, but not Scotland.

Updated national guidance for child protection in Scotland

The Scottish Government has published updated National Guidance for Child Protection in Scotland.

The new 2023 version replaces the Guidance document published in 2021 which is used to set out the responsibilities and expectations of everyone who works with, or comes into contact with, children and young people, families and carers in Scotland. It brings together a range of materials, research evidence, guidance and training to help leaders responsible for child protection and their colleagues to enhance and implement new ways for agencies to work together with children and young people, families, carers, and communities to protect children and young people from abuse, neglect and exploitation.

Dorset, Lincolnshire and Wolverhampton councils deliver government children’s social care programme

The Department for Education’s (DfE) has set up the Families First for Children (FFC) programme to test new ways to reform the children’s social care system. DfE aims for FFC to help children to stay with their families in safe and loving homes while protecting vulnerable children where needed.

FFC testing will include:

  • a move towards locally based, multi-disciplinary family help services and focus on greater family group decision-making
  • family network support packages (FNSPs) which aim to remove financial or practical barriers faced by families in accessing services
  • specialist child protection social workers in children’s services departments
  • a scheme to strengthen data sharing among partner agencies in a drive towards improving safeguarding partnerships.

Four local authorities – Brighton and Hove, Sunderland, Gateshead and Telford and Wrekin – have also been chosen to test a family networks pilot, backed by £7.8m of funding.

Scottish ministers reiterate commitment to new palliative care strategy

Responding to a question in the Scottish Parliament, Minister for Public Health and Women’s Health Jenni Minto has stated that the Scottish Government is developing a new National Strategy for Palliative and End of Life Care for Scotland. As part of this work, it is gathering data on current and projected needs for palliative care at a population level, mapping services and support across Scotland, and building on its understanding of people’s experiences of palliative and end of life care.

The minister stated that the outputs of this work will give the Scottish Government a clearer picture of how palliative care is provided and accessed across Scotland – and will inform a new strategy that reflects what matters to people experiencing serious illness, dying and bereavement.

The Scottish Government aims to publish a draft strategy for consultation in Spring 2024.

Scottish hospice funding request rejected

Responding to a separate question, Jenni Minto has stated that the Scottish Government is facing the most difficult financial situation since devolution, and therefore wrote to the hospice sector on 17 August 2023 to let them know that their request for funding of £15.5 million is currently unaffordable.

Northern Ireland neurology plan published

The Department of Health in Northern Ireland has published an overarching Independent Neurology Inquiry (INI) Implementation Plan, which includes over 70 recommendations for improving the safety of neurology services.

Ofsted to review Start for Life services in England

In the report ‘The best start for life: a vision for the 1,001 critical days’, published in March 2021, the UK Government committed to identifying opportunities to make proportionate improvements to the early years regulatory framework. The government re-stated this commitment in ‘The best start for life: a progress report on delivering the vision’, published in February 2023. As a first step to meeting this commitment, the government has asked Ofsted to carry out a joint thematic review with the Care Quality Commission (CQC) of Start for Life services, including their delivery through the family hub model.

Plans to close rail ticket offices in England scrapped

Plans to close hundreds of rail ticket offices in England have been scrapped. Transport Secretary Mark Harper said the government had asked train operators to withdraw their proposals because they failed to meet high passenger standards. The plans had led to several protests and threats of legal challenges from disability campaigners.

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