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Summer 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.

England’s ‘ambitions for palliative care’ refreshed

The ‘Ambitions for Palliative and End of Life Care: A National Framework for Local Action’ in England has been refreshed and published for 2021-26.

The framework sets out six key ambitions that describe good outcomes in palliative and end of life care for people of all ages, including their carers and others who are bereaved. It has been co-produced by a partnership of 27 national organisations, including Together for Short Lives.

This blog written by Professor Bee Wee explains the framework and the work of the partnership.

The ambitions are:

  1. Each person is seen as an individual
  2. Each person gets fair access to care
  3. Maximising comfort and wellbeing
  4. Care is coordinated
  5. All staff are prepared to care
  6. Each community is prepared to help.

What the 2021 election outcomes in Scotland and Wales mean

Elections were held across the UK on 6 May with Wales and Scotland both re-electing the governing parties who have guided them through the pandemic. In Wales, this means that Mark Drakeford remains as First Minister at the head of a minority Labour government with 30 MSs. In its manifesto, Labour committed to ensuring that the NHS continues to focus on end of life care. It also committed to reviewing patient pathway planning and hospice funding. You can read Welsh Labour’s manifesto here.

Prior to the elections, the Welsh Government published three important documents.

1. A Strategy for Unpaid Carers: this included commitments on short breaks and respite, saying that unpaid carers should have equal access to different and innovative forms of short breaks and / or respite taken with or without the person they care for. It also said that the Welsh Government would work towards a better understanding of how short breaks can be accessed, funded, and delivered.

2. The National Clinical Framework which stated that the End of Life Care Programme would continue.

3. A written statement on child burials and cremations. This announced that a contribution of £500 will be made available to any family in Wales that has lost a child. This will be a universal offer regardless of the family’s income. There is no obligation to accept the payment should the family not want it.

In Scotland, the Scottish National Party (SNP) remain in power with 64 seats – one short of a majority. In its manifesto, the SNP committed to ensuring children with palliative care needs receive the highest quality palliative care – underpinned by annual public funding of £7 million to ensure children’s hospice care is sustainably resourced.

You can read the SNP’s manifesto here.

New health and social care law fails to focus on children

In May, the government published the Queen’s Speech, setting out its legislative programme for the coming year. The central theme was ministers’ commitment to ‘build back better’ following the pandemic and its levelling up agenda, set out in the Conservatives’ 2019 election manifesto. Yet ministers missed the opportunity to level up for children who need palliative care. You can read our CEO Andy Fletcher’s reaction here.

The government’s programme for 2021/22 includes a Health and Care Bill which will establish integrated care systems (ICSs) in law in England. This was introduced to parliament in July 2021. While the reforms offer important opportunities to more effectively plan, fund and provide children’s palliative care, they hold a number of risks. We have joined more than 30 other children’s health charities highlighting the fact that the benefits of integrating care only seem to have been considered from the perspectives of adults and the services adults use. Read the group’s open letter to Health and Social Care Secretary Matt Hancock here.

New 10-year government genomics plan

The government has published its first implementation plan to achieving its 10-year genomic healthcare strategy, Genome UK, which envisages the UK developing an advanced genomic healthcare system to improve outcomes for patients through improved diagnosis, treatment, and prevention. You can read more here.

Ask your MP to become a Disabled Children’s Champion

Disabled children and their families are being #LeftInLockdown and shut out of the public conversation on COVID-19 recovery. Research from the Disabled Children’s Partnership (DCP) has shown that despite lockdown easing, too many families still cannot access life-changing services, still are facing grave mental health challenges, and are still more socially isolated than the rest of the population.

Every MP has a responsibility to stand-up for those in our society that are facing the worst injustices. Every MP has disabled children in their constituency. Every MP should be a champion for them.

The Disabled Children’s Partnership is calling for MPs from all parties to show their support for disabled children and families across the country by publicly signing up to become a ‘Disabled Children’s Champion’ – backing our #LeftInLockdown campaign for targeted COVID-19 recovery policies for the whole family. Find out how you can ask your MP to become a disabled children’s champion here.

#care247: children’s palliative care at home, out of hours and at weekends

Together for Short Lives would like seriously ill children and their families across the UK to be able to access the palliative care they need at home, when they need it, 24 hours a day, seven days a week. Sadly, we know that this is regularly not the case. Too often, whether or not families can access children’s palliative care at home, outside of normal working hours, depends on where they live.

In the autumn, Together for Short Lives will launch a campaign which calls on government and the NHS to change this. We want to encourage politicians, the media and as many members of the public as possible to engage with ministers and officials on this crucial issue.

To do so, we need permission to publish as many compelling stories as possible from young people and families about their experience of out of hours children’s palliative care at home. This could include access (or lack of) to:

  • support to manage a crisis at home, such as an infection, a sudden change in symptoms, or a piece of vital equipment failing.
  • short breaks for respite at home out of hours and at weekends, whether for a few hours or for a few days.
  • round the clock end of life care at home.

Please contact if you have a story that you would like to share. If we can gather enough case studies to share with politicians, officials, the media and the public, it could be the factor that helps us secure vital new resources to achieve 24/7 palliative care for every seriously ill child who needs it across the UK.


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