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Winter policy roundup for families

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The latest policy information for families. To receive the latest policy roundup, sign up to our family newsletter here.

Children’s palliative care mapping

Together for Short Lives presented the final findings from our mapping work to the annual general meetings of the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care on 25 November. We also discussed a series of draft, recommended policy actions for the government, NHS England and NHS Improvement (NHSE/I), Health Education England, integrated care systems (ICSs) and others.

We are finalising the policy recommendations with the APPG and hope to publish the report, service information and digital maps early in the New Year. The maps will show when and where key elements of palliative care are commissioned and will be accessible for seriously ill children and their families, by NHS integrated care system (ICS), by local authority and by Westminster constituency.

Many thanks to everyone who helped to encourage their local MP(s) to attend the APPG meeting. In addition to the APPG’s co-chairs Dr Caroline Johnson MP (Conservative, Sleaford and North Hykeham) and Siobhain McDonagh MP (Labour, Mitcham and Morden), the Parliamentarians who took part were:

  • Danny Kruger MP (Conservative, Devizes)
  • Chris Green MP (Conservative, Bolton West)
  • Stephen Timms MP (Labour, East Ham)
  • Lord Wigely (Plaid Cymru)
  • Peter Dowd MP (Labour, Bootle)
  • Dan Carden MP (Labour, Liverpool Walton).

Additional winter funding for hospices in England

HM Treasury and NHS England and NHS Improvement (NHSE/I) have decided to provide up to £20.79million per month to children’s and adult hospices in England for the period December 2021-March 2022 inclusive. The funding will be distributed by Hospice UK and NHSE/I are expected to confirm hospices’ individual allocations shortly. In return, hospices will be expected to complete the NHS Capacity Tracker, provide monthly financial returns and a short report in February setting out how the funding is being used.

The funding was confirmed in NHSE/I Chief Executive Amanda Pritchard’s letter to NHS system leaders on 13 December.

Department for Education (DfE) updates COVID guidance for specialist settings

The DfE’s updated guidance for England states that social care services for disabled children which provide respite care should continue to operate. This includes residential and non-residential respite services and both formal and informal care in the family home. As of 17 December, its guidance on using of personal protective equipment (PPE) in education, childcare and children’s social care remains unchanged.

NHS to fund specialist consultant in West Midlands

As reported by the BBC, the specialist paediatric palliative medicine consultant is to be funded by the NHS at Birmingham Children’s Hospital. The post has been previously been funded by a charity, Molly Olly’s Wishes, in a three-year project. The NHS money means it will now become a permanent role.

Mandatory vaccination to be introduced for everybody working in the NHS and social care from 1 April 2022

In November, Health and Social Care Secretary Sajid Javid announced that, in England, everybody working in the NHS and in social care must be vaccinated against COVID-19. This means that only those who can show that they have been vaccinated can be deployed in health and care settings, except for those who do not have face to face contact with patients or where somebody is medically exempt. Parliament approved the regulations necessary to enact this on 14 December and the requirement will come into place on 1 April 2022.

The government published its full response to the consultation on compulsory vaccination. This includes an impact statement. In the consultation response the government gives more detail about how this requirement will apply. On the guidance, it is important to note that only staff with face to face contact with patients will be required to be vaccinated – not all those entering the setting as with care homes.

We have been in touch with the Department for Health and Social Care (DHSC) to clarify the guidance from the point of view of hospices. The Department said that this refers to the extension of the setting based legislation only (i.e. that everyone entering a setting/care home in an employment capacity would need to be vaccinated unless specific exemptions). Therefore the activity based regulations which are to be introduced will apply to hospice staff who provide Care Quality Commission (CQC) regulated activities (unless exempt).

NHSE/I have published new guidance today on mandatory vaccinations for healthcare staff. On page 20 of the guidance, NHSE/I states “Whether to be vaccinated or not is a personal decision based on many factors and it is important to bear in mind that in most cases a decision not to have the vaccination is not a disciplinary or conduct issue.”

Adult social care white paper includes transition and young carers

The government published its adult social care white paper on 1 December. In the paper, the government recognises that social care supports adults of all ages – including young people moving into adulthood and those of working age. It includes the following commitments relevant to young disabled people in England who need social care and young carers:


The government’s ambition is for CQC to use its powers and duties to help improve outcomes for people who draw on care and support by assessing how local authorities are meeting individual’s needs. It says this could include CQC assessing how local authorities manage transitions between services – for example, between health and social care, and the transition from children’s to adults’ services.

Supporting young carers

  • The government believes that young people should be protected from inappropriate and excessive caring responsibilities, and that adult and children’s services need to work together and take a ‘whole family’ approach to the identification and support of young carers.
  • It highlights local authorities’ existing duty to offer young carers assessments and consider young carers’ needs when assessing support for adults.
  • The Department for Education (DfE) has highlighted young carers’ needs in their guidance to schools on use of education recovery programmes and funding (including their recovery premium and pupil premium guidance, and list of vulnerable children who can access schools or educational settings).
  • DfE will, for the first time, take steps to better quantify the numbers of young carers and understand the direct impact that being a carer has.
  • DfE will amend the school census, at the earliest opportunity, to include young carers. The government says this will raise the visibility of young carers in the school system – and will provide demographic evidence on the young carer population. It will also show what educational outcomes they are achieving, enabling the government to understand the impact of caring, and understand more about attendance and absenteeism.
  • From this, the government says it will be able to establish long-term trend data, and evidence the impact of any future support or investment that it may introduce as a result of the new evidence base.

Education and training for social workers

  • The government says that it is committed to improving the quality of social work education and training, and maintaining a sufficient supply of social workers with the right skills, knowledge and values.
  • It also says that, over the course of the next 3 years, it will work with the Chief Social Worker for Adults, Chief Social Worker for Children and Families, DfE, and Social Work England to improve the overall pre- and post-qualification landscape for social workers.

Health and Care Bill update

The government’s Health and Care Bill, which would put integrated care systems (ICSs) in England on a legal footing, has completed its passage through the House of Commons. The key changes made by MPs have been:

  • clause 59, which now would confer statutory power for the Care Quality Commission (CQC) to regulate ICSs, with priorities set by the Secretary of State for Health and Social Care
  • new clauses 60 and 61, which would give the Secretary of State a greater role to intervene where they deem local authorities fail to meet their duties under the Care Act
  • to exclude council-funded contributions from the government’s new £86,000 cap on social care costs for adults, only counting individual costs
  • individuals with significant private interests would now be banned from a seat on integrated care boards (ICBs).

This NHS Confederation blog describes these amendments in more detail.

In addition, Emma Hardy (Labour MP for Kingston upon Hull West and Hessle) tabled a Committee Stage amendment based on the proposed Charlie’s Law. This sought to achieve five things:

  1. Require the Secretary of State to put in place measures to improve early access to mediation services in hospitals where conflict is in prospect.
  2. Provide for access to appropriate clinical ethics committees, so that both doctors and parents are supported in making difficult decisions by impartial ethical experts.
  3. Provide the means necessary to obtain second medical opinions swiftly and to ensure that, when requested, parents receive access to their child’s full medical data, so that the second opinions are fully informed.
  4. Provide access to legal aid to ensure that families are not forced to employ costly legal representation or to rely on outside interest groups to fund representation in court.
  5. Create a new legal test of whether an alternative credible medical treatment would cause a child a disproportionate risk or significant harm in deciding whether a parent is able to seek that treatment for their child.

Ministers did not respond to the amendment.

We understand that judging what is in a child’s best interests is incredibly challenging for parents, health providers and the court. We understand that when conflict arises, both parties will, in the majority of cases, advocate proposals which have been developed with what they consider the child’s bests interests to be in mind.

However, we believe that where mediation fails or is not possible, the best interests of a child should be the primary consideration for the court in determining a course of action. We believe that the court should be free to objectively judge what a child’s best interests are without being legally obliged to make any assumptions or presumptions about whether proposals made by parents or health providers are in the child’s best interests.

Should peers choose to table amendments to the bill in the Lords to the effect of that tabled by Emma Hardy in the Commons, we would be keen to work with them to make sure that the legal framework that relates to resolving conflict between parents and health service providers reflects the principle of the child’s best interests. We are not convinced that the new proposed test of significant harm would help to improve the current legal framework and make sure that the court is able to objectively judge what is in a child’s best interest, or would operate clearly with and alongside the Children Act 1989.

All peers will now have the opportunity to propose changes to the bill at the House of Lords Committee Stage, which will begin on 11 January. We are working with Marie Curie, Hospice UK and Sue Ryder to campaign for an amendment to Clause 16 tabled by Baroness Finlay and Lord Patel that would ensure that integrated care boards have a legal duty to arrange for the provision of specialist palliative care services. With our partners on the Children and Young People’s Health Policy Influencing Group (HPIG), we are also campaigning for peers to amend the bill to:

  • improve accountability for children’s health and care services in ICSs
  • improve the extent to which data about children is shared between services, as the bill already proposes for adults
  • extending the Better Care Fund to children as well as adults
  • put guidance for ICSs on children on a statutory footing.

These issues were raised in speeches by Lord Bichard, Baroness Tyler, Baroness Hollins, Lord Farmer, Baroness Meacher, Lord Shinkwin, Baroness Uddin, Baroness Finlay and Baroness Walmsley during the House of Lords Second Reading debate.

New Child Disability Payment replaces DLA in Scotland

The Child Disability Payment replaced Disability Living Allowance (DLA) for children in Scotland on 22 November. This means that, in Scotland, for the purpose of fast-tracking applications for the payment, a child will be deemed to be terminally ill on the basis of a clinical judgment, and not whether they are judged to be in the last six months of their life, as is the case in the rest of the UK. In Scotland, Benefits Assessment for Special Rules in Scotland (BASRiS) forms should now be completed instead of DS1500 forms.

Law to change terminal illness rules for social security progresses in Northern Ireland Assembly

The Social Security (Terminal Illness) Bill has passed both the Second Stage and the Consideration Stage in the Northern Ireland Assembly. The bill is proceeding via accelerated passage, which means that there has been no Committee Stage. If the bill becomes law, it will change special social security rules which currently apply where life expectancy is six months or less to where life expectancy is 12 months or less.

Disabled Children’s Partnership Open Letter

On 26 November, we joined our fellow Disabled Children’s Partnership (DCP) members by writing to the Secretaries of State for Education and for Health and Social Care. We asked for urgent clarification on how unringfenced funding announced in the spending review – for local authority services; for NHS backlogs; and for education recovery – would be used to meet the needs of disabled children and their families. In the absence of dedicated funding for disabled children’s health and care services, it is vital that this funding is used to address the impact of the pandemic and to begin to fill longstanding shortfalls in support such as short breaks and respite care.

New acquired brain injury (ABI) strategy

The government has announced that it will develop an ABI strategy for children and adults. This follows a campaign by Chris Bryant (Labour MP for The Rhondda) and charities including The Children’s Trust. The government says that the strategy will be informed by a call for evidence early in 2022. This will be an opportunity for stakeholders including healthcare professionals, people living with an acquired brain injury, their families and carers, to put forward their views about what should be prioritised within the strategy. These could include:

  • research into the societal, congenital, medical and environmental causes of ABI
  • the provision of relevant services for diagnosing ABI
  • identifying adults and children with ABI
  • assessing needs
  • planning services.

Work to develop the strategy will be overseen by a dedicated programme board, which Gillian Keegan, Minister of State for Care and Mental Health, will co-chair with Chris Bryant. The government says that once published, the strategy will be kept under review and may be revised periodically.

Special educational needs and disability (SEND) review

On 1 December, Children’s Minister Will Quince was subject to an accountability hearing from the House of Commons Education Select Committee. He told MPs on the committee that it was his job to make sure that the government completed the SEND review; a green paper with proposals for public consultation would be published the first three months of 2022. The minister described the review as a huge overhaul of the SEND system in England. He also stated that:

  • the Department for Education’s (DfE) communication and expectation management with parents, the SEND community and stakeholders “has been regrettable”.
  • the £2.6billion investment in SEND announced at the Spending Review will help build more special schools, improve early identification and potentially build new units within mainstream schools
  • DfE is looking at how the system can improve skills among all teachers, in initial teacher training or as part of ongoing professional development
  • the focus on support must move from late intervention and acute need to early intervention and getting support.

Northern Ireland 10-year health and social care report details children’s palliative care progress

The Department of Health in Northern Ireland has published a report setting out the progress made so far in achieving its ‘Health and Wellbeing 2026: Delivering Together’ strategy, which was published in 2016. In the report, the department states that the Paediatric Palliative Care Strategy work has been prioritised across the health and social care (HSC) trusts. It describes how, through the regional paediatric palliative care network:

  • the Paediatric and Life Limited Service (PALLS) has delivered a dedicated specialist nurse working alongside families of babies and children at the end of their lives to provide access to a bed at Northern Ireland Children’s Hospice or the child’s own home
  • a dedicated regional paediatric palliative care consultant has been appointed and is currently in training in Great Ormond St Hospital in London
  • appointment of paediatric palliative care leads across the trusts have brought a much greater focus to the co-ordination of services to drive forward improvements to pathways for this cohort of children.

Scottish Government outlines plans to support children experiencing chronic pain

The Scottish Government is consulting the public on a draft framework that sets out its vision to improve the quality of life and wellbeing for people with chronic pain in Scotland. In the document, the Scottish Government states that there is evidence to suggest that there is a lack of information and training resources on pain and its management for professionals working in children’s services. It goes on to state thar work is currently underway to assess the current status of paediatric pain management services across Scotland with the aim of identifying opportunities to further improve support for children with chronic pain and their families. Outcomes for this group will be delivered in partnership as part of cross-cutting government policy work on paediatric care and the transition to adult services, and not in this framework.

National review of early help, care and support and transition for disabled children in Wales

Care Inspectorate Wales has published ‘Let me flourish’, a national review of early help, care and support and transition for disabled children in Wales. It has found:

  • that local authorities and their partners recognised safeguarding as a priority. There was evidence of good joint working to ensure disabled children were safeguarded
  • a lack of sufficient service provision to promote the well-being of disabled children.
  • variable practice across Wales regarding how well the voice and choices of disabled children were sought, heard and captured
  • data submitted by local authorities identified very few parents/carers of disabled children had received an assessment of their needs nor a support plan.

New bereavement framework in Wales

The Welsh Government has published National Framework for the Delivery of Bereavement Care. Primarily designed for health boards, local authorities and providers of bereavement services, the Welsh Government uses the framework to set out the following principles:

  • People who are bereaved will be treated with compassion, empathy, and kindness, have their wishes, choices and beliefs listened to, considered and respected by all.
  • Pre-bereavement will also be recognised, to offer support before the death wherever possible.
  • People’s needs and grief reactions are recognised and acknowledged as being different at different times, (for example, the need for practical help and/or emotional support). People may need to return several times for these different types of support following a bereavement.
  • There is help to know where to turn for additional support when it is needed, this should be available for bereaved people affected by any cause of death, at a time and place when they can access it easily.
  • The needs of bereaved people with protected characteristics, as outlined in the Equality Act 2010, of the Public Sector Equality Duty (age, disability, gender reassignment, marriage or civil partnership, pregnancy and maternity, race, religion or belief, sex, sexual orientation) are recognised.

Welsh Government publishes plan for implementing strategy for unpaid carers

The Welsh Government’s new document includes a plan for meeting its objectives to:

  • develop a national model for break options in Wales
  • understand how break options can be redefined to meet individual need, including alternatives to the ‘traditional’ model of overnight care for the individual with care needs
  • work towards a better understanding of how a break from caring can be accessed, funded and delivered by a range of providers
  • explore how innovative approaches to break options, including the Scottish model of ‘respitality’ can be introduced in Wales.

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