The latest policy information for families.
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Chancellor’s Spring Statement
On 23 March the Chancellor of the Exchequer delivered his Spring Statement which, as the Treasury has been aiming to present it, includes tax cuts to support families with the cost of living. However, as prices rise sharply, we call on the government to go much further to help families of children with life-limiting and life-threatening conditions.
In his statement he set out the following tax and spending announcements:
£500 million for the Household Support Fund in 2022/23. This allocation extends the fund, which received an initial allocation of £500 million for the period 6 October 2021 to 31 March 2022. It is distributed by councils in England through small, direct payments to support vulnerable households meet daily needs such as food, clothing, and utilities.
- An increase to the level of earnings at which people start paying National Insurance contributions (NICs) from £9,880 to £12,570 in July 2022. The rise aligns the NICs thresholds (the primary threshold and lower profits limit) with the point at which people begin paying income tax on their income (the income tax personal allowance). The NICs thresholds and personal allowance will both then be unchanged until April 2026. They would normally be increased by inflation each year.
- Reducing Class 2 NICs to zero for the self-employed with profits between the small profit’s threshold (currently £6,515) and the lower profits limit (currently £9,568), from April 2022. Currently, Class 2 NICs are paid at a flat rate of £3.05 if you have self-employed profits of £6,515 or more.
- A temporary 12-month reduction of 5p per litre on fuel duty, starting from 6pm on 23 March.
- A decrease, in April 2024, to the basic rate of income tax from 20% to 19%.
- An increase in the employment allowance (which allows employers to reduce their NICs payments up to a certain amount) from £4,000 to £5,000, from April.
- Reducing the rate of VAT on energy saving materials (such as solar panels) from 5% to 0%, for five years from April 2022. Wind turbines and water turbines will be added to the list of energy savings materials.
- HMRC and DWP received additional funding to collect tax, prevent and detect fraud and error, and collect debt.
Health and Care Bill: new duty on NHS to commission palliative care
Following months of work with our campaign partners Marie Curie, Hospice UK, Sue Ryder and the Alzheimer’s Society, the government has agreed that new local NHS bodies will have legal duty to plan and fund palliative care for people of all ages, including children and young people.
This welcome news came in the form of an amendment to the Health and Care Bill which was debated and then passed by peers on the 1 March. The amendment means that a new legal duty will be placed on integrated care boards (also known as ICBs, new NHS bodies which will be responsible for plan and fund health services from July) to commission palliative care.
In other good news, and following our joint campaigning as part of the National Children’s Bureau’s Health Policy Influencing Group, specific commitments have now been made by the government during a debate in the House of Commons in relation to children and the new integrated care systems (ICSs):
- Integrated care boards (ICBs) will be required by primary legislation to set out the steps it will take to address the needs of those aged 0-25 in their forward plan.
- NHS England will issue statutory guidance, stating that each ICB must nominate an executive children’s lead, ensuring much – needed leadership for babies, children and young people on every ICB.
- NHS England guidance will require ICB annual reports to include reporting on how they are delivering their safeguarding duty, from April 2023.
- The government will issue bespoke guidance for babies, children and young people, including provisions for integrated care partnership (ICP) strategies to consider child health outcomes and integration of children’s services, as well as providing that the ICP should consult local leadership, as well as children and families themselves.
The government also acknowledges the distinct and serious challenges with sharing relevant information about children and is committed to delivering change in this area. The government aims to set out a report before Parliament within a year setting out:
- The government’s policy on a single consistent identifier for children and its approach to improving information sharing more generally.
- How this can be achieved across health, children’s social care, police, and education settings.
- The cross-government actions that will be taken to implement the policies set out in the report.
Amendment proposed to offer resolution on disputes between parents and medical professionals
Crossbench peer Baroness Finlay of Llandaff had been working with the Charlie Gard Foundation to try to change the law on resolving disputes. On 30 March, the amendment was defeated in the Commons by 259 votes to 147.
The reform would have applied where, in the words of the amendment, there is a difference of opinion between a parent of a child with a life-limiting illness and a doctor responsible for the child’s treatment about the nature or extent of specialist palliative care that should be made available for the child. It would also apply where there is a difference of opinion on the extent to which palliative care provided to the child should be accompanied by one or more disease-modifying treatments.
Under the new law, where the authorities responsible for a health service hospital became aware of the difference of opinion, they would need to take all reasonable steps:
- to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to, and considered
- to make available to the parent any medical data relating to the child required to obtain evidence to inform the parent’s proposals for the child’s treatment (including obtaining an additional medical opinion)
- to allow the provider of an alternative treatment that is being advocated by the parent to provide evidence, in person or remotely, to the mediation process and subsequently to the court
- to demonstrate the reasons that significant harm would be likely to be caused by the proposed treatment
- where the two parties are unable to resolve their difference of opinion, to allow for a mediation process, acceptable to both parties, between the parent and the senior doctor with overall clinical responsibility.
The amendment states that nothing in the above would require doctors or institutions to provide any specific treatment by a doctor or institution or provide the resources for any treatment. It also not requires a doctor to provide treatment that they consider likely to be “futile or harmful, or otherwise not in the best interests of the child.” Read the full text of the amendment.
When an amendment on this issue was tabled at the bill’s Committee Stage, Together for Short Lives had significant reservations about its potential to alter the current legal test that the court applies when resolving a dispute between professionals and those with parental responsibility for a child, which is the best interests of the child. Following the Committee Stage, we held constructive discussions with Baroness Finlay and the Charlie Gard Foundation, which we are grateful for.
Despite this development, Together for Short Lives briefed MPs ahead of the House of Commons vote. The government opposed this and, because of the Conservatives’ majority in the Commons, the amendment was removed from the bill following a vote. However, MPs accepted the government’s own amendment, which will place a duty on the health and social care secretary to carry out a review into the causes of disputes between parents and professionals and report within one year. We are asking the government to include us and make sure that families, professionals, and services have opportunities to be involved too.
Changes to death certification and cremation forms from 24 March
The Coronavirus Act 2020, which changed the processes for certifying deaths and arranging cremations, expired at midnight on 24 March 2022. This means that informants will need to register deaths in person, not remotely. The provision which meant that any medical practitioner could complete a medical certificate of cause of death (MCCD) has also ended.
Some changes have been retained on a permanent basis, however. The period before death within which a doctor completing a MCCD must have seen a deceased patient remains 28 days (prior to the coronavirus pandemic, the limit was 14 days). It will also still be acceptable for medical practitioners to send MCCDs to registrars electronically.
The government’s intention is that the form Cremation 5 will not be re-introduced. The following emergency provisions are changing with the expiry of the Act:
A new approach on life with COVID-19 proposed by the Government
On 21 February, the Prime Minister made a statement in the House of Commons about the government’s ‘Living with COVID’ plan.
The plan was based on four principles, including protecting the most vulnerable with targeted vaccines and treatments. The government accepted Joint Committee on Vaccination and Immunisation (JCVI) advice for new spring booster for those aged 75 and older, older care home residents, and those over 12 who are immunosuppressed.
On page 18 of the plan, the Department of Health and Social Care announced that from 1 April, there will be some limited ongoing free testing. Limited symptomatic testing will be available for a small number of at-risk groups and the government will set out further details on which groups will be eligible.
Advice on vaccinations for children
The UK’s Joint Committee on Vaccination and Immunisation has advised that that it is safe to offer COVID-19 vaccinations to children aged 5 to 11. The UK nations have released statements that children aged 5 to 11 will be offered the COVID-19 vaccination sometime this year. Clinically vulnerable children aged 5 to 11 in all four nations have already begun to be offered a lower dose of the Pfizer vaccine. This offer will be extended to include 5- to 11-year-old children for whom parents/guardians give consent.
A revised standard of care published for disabled children and young people up to 25
The National Institute for Health and Care Excellence (NICE) has published a new guideline on integrated service delivery and organisation across health, social care and education for disabled children and young people up to 25 with severe complex needs. The guideline includes important references to palliative care, in addition to the actions that commissioners, provider organisations and professionals should take to join up services.
Changes to allow children and young people fast track access to financial support in their final year of life
The Department for Work and Pensions (DWP) has announced that children, young people and adults in England and Wales who are thought to be in their final year of life will be able to receive fast track access to financial support through the ‘Special Rules’. The current rules only allow for children thought to be in their final six months of life to access this financial support. Those who are eligible will not be subject to a face-to-face assessment or waiting periods, and in many cases, they will receive the highest rate of benefits.
DWP has already laid regulations in Parliament which will change the rules for some working-age benefits. Primary legislation is needed to change others, including those currently available to disabled children and their families. This will require legislation to be introduced in the 2022/23 parliamentary session, which will begin in May.
New care plan prioritises children and young people’s needs in the care they receive
An advance care plan (ACP) sets out the actions that should be taken when a child’s condition becomes unstable or deteriorates or they develop potentially life-threatening complications of their illness. ACPs detail collaborative discussions between professionals and families regarding their wishes for the care of the child. These actions should be discussed and agreed by the family and the child, when appropriate. If a child is approaching the end of their life, this planning is particularly important.
The purpose of these plans is to try to ensure that the child’s care runs smoothly and in accordance with theirs and their family’s wishes. This may, for example, ensure the care happens in a place that they choose, or prevent inappropriate admissions to hospitals.
On 17 March, the Department of Health and Social Care (DHSC) published Universal Principles for Advance Care Planning for people in England who need palliative and end of life care. DHSC states that the principles should be applicable to everybody, but that the detail that sits behind each of the high-level principles may need to be adjusted to meet the diverse needs of people, due to their age, condition, or circumstance.
Together for Short Lives would like all children and young people who need palliative care and their families to be offered an opportunity to make an advance care plan (ACP). We believe that a set of additional universal ACP principles for children and young people could help to bring about more equitable access to these important conversations and plans. We are keen to work further with NHS officials to develop such principles.
Professionals need specific skills to be able hold the potentially challenging conversations involved in developing an ACP for a child or young person. For these reasons, we are continuing to work with NHS England and NHS Improvement to develop a set of principles which can underpin ACPs for children and young people. We recognise that the tools used to develop ACPs vary across regions and care settings in England; we are working with the Children and Young People’s ACP Collaborative to further develop a tool for professionals. We are also working with partners to develop core competencies for children’s palliative care professionals, including in advance care planning.
You can read more about ACPs for children and young people in our Care Planning in Advance factsheet which is available to download here.
British Sign Language is set for legal recognition
A bill introduced by Labour MP Rosie Cooper aims to promote British Sign Language (BSL) amongst public bodies. It would ensure that the government helps deliver better public services to deaf people, so that a more inclusive and accessible society is possible for them. The bill would also require government departments to follow guidance on how the use of BSL can be put in place across services.
Charities in Wales will benefit from £3m funding over the next three years
21 Charities supporting people in Wales through bereavement will benefit from £3m in funding over the next three years, Lynne Neagle, Welsh Government Deputy Minister for Mental Health and Wellbeing, Lynne Neagle, announced on the 18 March. The organisations awarded cover a wide range of areas and will provide funding for a variety of support, including providing help to children and young people who have lost a loved one and funding training for volunteers to help them support the bereaved.
Those awarded funding from the Bereavement Support Grant are:
- Sandy Bear Children’s Bereavement Charity
- Nightingale House Hospice
- Paul Sartori Foundation
- Tŷ Hafan Children’s Hospice
- Sands (Stillbirth and Neonatal Death Society)
- Aberystwyth and District Hospice at Home Volunteers (HAHAV)
- Mid & North Powys Mind
- Tẏ Gobaith and Hope House Children’s Hospices
- Black, Asian and Minority Ethnic Mental Health Support
- Cruse Bereavement Support
- Marie Curie
- Diverse Cymru
- Age Cymru
- City Hospice, Cardiff
- Ponthafren Association
- ACE – Action in Caerau and Ely
- The DPJ Foundation
- Options Pregnancy Crisis and Post Abortion Service (IPAC Options)
Unpaid carers in Wales will receive payment for their ‘pivotal role’
On 23 March, the Welsh Government announced that more than 57,000 unpaid carers in Wales will receive a £500 payment in recognition of the ‘pivotal role’ they have played during the pandemic. The payment is part of a £29m investment in unpaid carers from the Welsh Government and recognises the financial and emotional hardship many have experienced. Unpaid carers who are receiving Carer’s Allowance on March 31st this year will be eligible for the payment.
An unpaid carer is someone who cares for a partner, relative or friend who has an illness of disability. They will be able to submit their claim to local authorities later this year. Further details on how and when to register for the payment will be available shortly.
The payment is being launched after a survey of more than 1,500 unpaid carers found nearly half had to use their personal savings and give up work or study to care, while more than half had to give up on hobbies or personal interests because of their caring role.
Government paper encourages the integration between children and adult care
On 9 February, the Department of Health and Social Care (DHSC) published the Integration White Paper. For adults, this proposes:
Shared outcomes which prioritise people and populations which bring organisations together to deliver on a common purpose for the people they serve. DHSC envisage a shared framework between organisations and local authorities to bring about changes that serve the needs of their communities. Implementation of shared outcomes will begin from April 2023.
- Strong leadership and accountability: local leaders, the NHS and citizens will have a unique understanding of, and relationships with, their populations through formal place-based arrangements for health and care services in each area, to give everyone shared access by Spring 2023. These place – based arrangements – will align with existing integrated care board (ICB) boundaries as far as possible. These proposals will not change the current local democratic accountability or formal accountability officer duties within local authorities or those of the ICB and its chief executive.
- Finance and Integration: integration of finances between local authorities/NHS, to ensure better use of resources to address immediate needs, but also support long-term investment in population health and wellbeing. Existing pooling arrangements (e.g. section 75, NHS Act 2006), with a view to simplifying the regulations for commissioners and providers across the NHS and local governments to pool their budgets to achieve shared outcomes. This will be determined on what both parties consider to be fair and appropriate contributions.
- Digital and Data: Maximising transparency and personal choice: ensuring that all patient information is in one shared area for their access, maximising transparency, personal choice, and accountability. DHSC says that this is aimed to be achieved for all citizens by 2024. Basic digital, data and technology skills will be included in the training of all health and care staff. To support place-based organisations, ICSs will develop digital investment plans for bringing all organisations to the same level of digital maturity.
- Delivering Integration through workforce and carers: proposals in this paper build on the proposals to support the social care workforce as outlined in the Adult Social Care Reform White Paper, People at the Heart of Care. At the heart of this again is the partnership/integration of work and support amongst ICSs/health and care workforce, working with national and local organisations.
- People and communities: the principles set out in this paper aim to support a better joined up health and care system, with people’s wishes and wellbeing at its heart. Access to information, more transparency and the ability for people and communities to hold decision makers to account. It aims to remove barriers in various areas/regions in the UK, the ongoing struggle against postcode lotteries.
While children’s social care is not directly within the scope of this paper, it encourages systems to consider the integration between and within children and adult health and care services wherever possible:
- DHSC states that ICSs represents a huge opportunity to improve the planning and provision of services to make sure they are more joined up and meet the needs of babies, children, young people, and families.
- The Independent Review of Children’s Social Care is reviewing the fundamental needs, experiences and outcomes of the children supported by Children’s social care; government will review their recommendations once they have published their final report.
- Joined up care and expanding family hubs to more areas across the country, funding key programmes such as Supporting Families and supporting the Implementation of the Early Years Healthy Development Review.
- Budget: recently announced £500m package for these services, to provide support for families so they can access the help and care that they need.
Welsh children’s hospices’ funding to increase
Hospices in Wales will receive an extra £2.2million as part of the Welsh Government’s end-of-life care review. Of the funding, £888K will go to the two children’s hospices, Tŷ Hafan and Hope House, with the remainder contributed to adult hospices. We have welcomed the news.
This all falls under phase one of Wales’ end-of-life review, with phase two commencing from April 2022, looking at wider end-of-life provisions.
The Welsh Government states that the additional £2.2m funding provides hospices across Wales with a significant increase to their core funding allocations and offers a level of certainty on which they can plan and deliver future service provisions.
Objectives for 2022/23 set out focus on bettering health access and outcomes
NHS England has published its 2022/23 priorities and operational planning guidance, setting out the objectives and priorities for the year ahead. And a new target date of 1 July 2022 has been agreed for statutory arrangements to take effect and integrated care boards (ICBs) to be legally and operationally established.
The document sets out a strong focus on tackling health inequalities and access, improving outcomes in population health, preventing ill – health, and supporting broader social and economic development.
Priorities for 2022/2023 include:
- Investing in the workforce
- Responding to COVID-19 more effectively
- Delivering significantly more elective care to tackle the elective backlog
- Improving the responsiveness of urgent and emergency car
- Improving timely access to primary care
- Improving mental health services and services for people with a learning disability and/or autistic people
- Continuing to develop the approach to population health management, prevent ill health and address health inequalities
- Using digital technologies to transform the delivery of care and patient outcomes and making the most effective use of resources
- Establishing ICBs and collaborative system working
Key priorities set out for children and young people:
- Delivery plans being prepared across elective inpatient, outpatient and diagnostic services for adults and children (including specialised services) for April 2022 to March 2023.
- Expanding specialist care and treatments for infants, children, and young people by increasing the support provided through specialist perinatal teams for infants and their parents up to 24 months.
- Continuing to expand access to children and young people’s mental health services. PCNs and mental health trusts are asked to continue to use the mental health practitioner ARRS (Additional Roles Reimbursement Scheme) roles to improve the care and treatment for adults, children and young people.
- A strong commitment to reducing reliance on inpatient care for both adults and children with a learning disability and/or who are autistic, consistent with the ambition set out in the NHS Long Term Plan, and to develop community services to support admission avoidance and timely discharge. This will include access to community mental health services; support for autistic children and young people and their families; and access to the right support and housing.
- Ensuring preventative services are provided and accessible for socio-economically deprived populations and certain ethnic minority groups with a particular focus on obesity, which has seen a major increase in children during the pandemic.
Concerns about access to radiotherapy addressed
Concerns about access to radiotherapy during a House of Commons debate. Health and social care minister Maria Caulfield tried to reassure colleagues that, during the pandemic, cancer had remained an absolute priority. She stated that the cancer backlog is not necessarily in treatment, but in diagnostic procedures. She also reiterated that the use of radiotherapy must be a clinical decision and that its use is hard to accurately establish. She warned against giving patients the impression that they should be asking for radiotherapy instead of surgery and chemotherapy.
Government has placed health and social care needs for disabled children and families at the heart of its spending review
In response to a question from Caroline Lucas MP on whether the government will clarify how spending review funding will meet the health and social care needs of disabled children and their families, children’s minister Will Quince said:
- he believes it is right for local authorities to determine what services are required locally, including short breaks
- this year, councils have access to £51.3 billion to deliver their core services, including a £1.7 billion grant for social care
- the government has also given over £6 billion in funding directly to councils to support them with the immediate and longer-term impacts of the COVID-19 spending pressures; this includes children’s services
- the department will continue to work with other government departments, including the Department for Levelling Up, Housing and Communities, to ensure the needs of children’s services are met.
Working parents across Northern Ireland will receive bereavement leave and pay
The Northern Ireland Assembly has passed a new law, the Parental Bereavement Leave and Pay Bill, which will provide support for working parents across Northern Ireland, to take paid time off from work to come to terms with the loss of their child if they choose to do so.
As a result, all employees will have a right to statutory parental bereavement leave of at least two weeks from the day they start their job, regardless of how long they have worked for their employer.
To qualify for statutory parental bereavement pay during this time, the parent must have worked for their employer for at least 26 weeks at the time of their child’s death, and a minimum earnings threshold will also apply. Provision will not be available for self-employed parents.
Following Royal Assent, this new employment right will be introduced this year.