Councillor Skelt will propose and Councillor Hands will second:

·        Research from palliative care charity, 'Together for Short Lives', shows that NHS funding for local children’s hospices in England varied by as much as £483 per child in 2022/23.

·        The charity found a huge variance in local NHS spending on lifeline care for seriously ill children, as well as a lack of understanding on the number of children who need palliative care, and is calling urgently for fair, long-term NHS funding to sustain crucial children’s hospice services.

·        In 2022/23, Norfolk and Waveney spent the highest amount per child of any Integrated Care Board, averaging £511 for every child in the area with a life-limiting condition. In contrast, the Integrated Care Board covering Gloucestershire spent an average of just £58 per child.

·        Thanks to a successful campaign to save the Children’s Hospice Grant, the Minister of State for Social Care has promised £25 million of NHS funding for children’s hospices in 2024/25.

·        However, neither the UK Government nor NHS England has confirmed how the grant will be distributed.

The Council is concerned that:

·        Due to the disparity of funding for children with life-limiting conditions, those suffering in Gloucestershire may not get the additional support that they may need.

·        The lack of clarity and certainty on how and when the grant will be distributed means children’s hospice services cannot plan effectively how they can help local families.

The Council calls on the Leader of the Council to write to the Minister of State for Social Care:

1.                To confirm as a matter of urgency how much of the £25 million each children’s hospice in Gloucestershire will receive in 2024/25 and when they will receive it.

2.                To do what they can to remove the inequality in local funding for children’s palliative care so that every family caring for a seriously ill child can access the support and care they need – when and where they need it.

108.8         The Mayor referred to the Notice of Motion, as set out on the Agenda and indicated that, in accordance with the Rules of Procedure, it was necessary for the Council firstly to decide whether it wished to debate and determine the Motion at this evening’s meeting, or whether it wished to refer the Motion, without debate, to a Committee for consideration with authority either to make a decision on the matter or bring a recommendation back to Council.

108.9         Upon being proposed and seconded, it was

RESOLVED          That the Motion would be discussed at this evening’s Council meeting.

108.10       The Motion, as set out on the Agenda, was proposed and seconded.   The proposer of the Motion indicated that children’s hospices were doing amazing work across the whole country in supporting children with life-limiting illnesses in difficult financial circumstances.  The Leader of the Council’s recent charity fundraiser for James Hopkins Trust highlighted the need for hospices to fundraise to ensure they could deliver their essential work.  According to ‘Together for Short Lives’, the UK’s leading health charity for children, 99,000 babies, children and young people in the UK were living with health conditions that were life-limiting or life-threatening and that number was rising.  Many of these children had complex conditions that needed specialist care 24 hours a day, seven days a week.  ‘Together for Short Lives’ was campaigning for consistent funding nationally and this Motion would add the Council’s voice in support of the campaign by calling on the Leader of the Council to write to the Minister of State for Social Care to confirm, as a matter of urgency, how much of the £25M each children’s hospice in Gloucestershire would receive in 2024/25 and when they would receive it; and, that they would do what they could to remove the inequality in local funding for children’s palliative care so that every family caring for a seriously ill child could access the support and care they needed when and where they needed it.

108.11       The seconder of the motion stated that, as with many public services, funding cuts and uncertainty had contributed to the current inequality in children’s hospices.  The work of children’s hospices was so important for many reasons, not least to give parents and other family members respite from the pressures and demands of having a child with additional needs.  Aside from the physical and financial pressures of a parent, guardian or sibling of a child who needed 24 hour care, their mental wellbeing was also severely affected. Having somewhere that a parent felt they could safely access advice, support and respite for their child was vital. The residents of Gloucestershire deserved transparency and certainty in how their public services were funded. 

108.12       A Member welcomed the Motion, having previously expressed concern about supporting young children with additional needs.  She was aware that children undergoing cancer care currently had to travel to Bristol and Birmingham as there were no facilities within Gloucestershire and she hoped some of the funding could go towards helping children to receive care for cancer treatment.  A Member proposed an amendment to the Motion in order to refer this matter to the Gloucestershire Health Overview and Scrutiny Committee.  He felt there were many questions which needed to be asked of the Gloucestershire Integrated Care Board and clinicians and he raised concern that Members were being asked to make a decision based on limited information, for instance, there was no mention of the actual number of children with life-limiting illnesses within the Gloucestershire Integrated Care Board, what the definitions were and where responsibility lay for those moving to the county, for example, those at National Star who were considered to have long-term, life-limiting illnesses, furthermore, there was no information about how paediatric teams took decisions about putting young people onto clinical trials rather than moving them to palliative care and how that sat within the National Institute for Health and Care Excellence (NICE) guidelines.  He also questioned what support was available for respite care, including short breaks, and pointed out that this was multi-agency. The Council’s representative would be able to raise all these matters at the Gloucestershire Health Overview and Scrutiny Committee where they could ask the questions directly of the Gloucestershire Integrated Care Board and clinicians and report back to the Overview and Scrutiny Committee and Council accordingly.  Individual Integrated Care Boards had a duty to determine the level of NHS funded hospice care required locally and to ensure the provision of palliative and end of life care services to meet local need.  To hold Integrated Care Boards to account, NHS England was including palliative and end of life care in the list of topics for regular performance discussions at national and regional level and all of that information should be available to the Gloucestershire Health Overview and Scrutiny Committee.  His suggestion would be to ask the Gloucestershire Health Overview and Scrutiny Committee to do a deep-dive and call expert witnesses who would be able to give the evidence; the Department of Health and Social Care had already issued a statement in relation to this in January 2024 and he was confident that would be the response to a letter sent by the Leader of the Council.  He hoped the proposer and seconder would consider amending the motion on that basis and stressed that he did not intend to denigrate the losses felt by parents but felt the Gloucestershire Health Overview and Scrutiny Committee should do the hard work and report back via the Council’s representative to Overview and Scrutiny Committee and Council.  The Leader of the Council welcomed the amendment which he felt strengthened the Motion but he would like to write to the Minister of State for Social Care in addition to that.  The proposer and seconder of the Motion confirmed they were happy with that approach and this subsequently became part of the substantive Motion.

108.13       A Member explained that he worked as a Fundraising Manager for a children’s hospice in Oxford which was the first in the world when it was established in 1982 so these facilities had only been around for just over 40 years.  It was often the case that the things people did not want to think about were the last to be introduced and, as with many statutory services, charities were taking the burden.  It was a catch 22 situation insofar as the NHS looked at its budget and saw it did not spend a lot on children’s hospice care and therefore did not need to in the future so that cost was being absorbed by charities which were also subject to cost of living strain.  He welcomed the amendment and agreed that the Gloucestershire Health Overview and Scrutiny Committee would be best placed in terms of access to information to ensure that the county received its fair share so that children were able to access the care they needed; however, he felt it was important to get this message across wherever possible and agreed that the Leader of the Council should also write to the Minister of State for Social Care - the Council should be doing all it could to ensure that families at their lowest point were receiving the funding they needed and were entitled to.

108.14       A Member questioned how many children’s hospices there were in Gloucestershire and the UK in total as this would make a difference in terms of the level of grant the county may be entitled to.  Whilst Norfolk and Waveney may have spent the highest amount per child of any Integrated Care Board, averaging £511 per child with a life-limiting condition compared to £58 per child in Gloucestershire, she felt it was necessary to know the numbers behind that as it could be there were less children with life-limiting conditions in the county.  She felt it was an important Motion and agreed the Council should do everything it could - she was glad to hear the additional questions and the suggestion to take it to the Gloucestershire Health Overview and Scrutiny Committee and felt it would be beneficial to write to the Minister of State for Social Care as well.  The Council’s representative on the Gloucestershire Health Overview and Scrutiny Committee indicated that she fully supported the Motion and would be happy to take it to that Committee.  She had additional queries about how many children were counted within the financial calculation as there was quite a lot of variation and it was not clear if the same metrics were being used.  A Freedom of Information request had suggested there were 75 children in hospice care in Gloucestershire but the Integrated Care Board did not fund hospices in Gloucestershire, they funded a group of hospices shared across Worcestershire and other regions so that was another query which should be raised.

108.15       Accordingly, the substantive Motion was proposed and seconded and it was

RESOLVED           1.To refer the matter to the Gloucestershire Health Overview and Scrutiny Committee.

2.That the Leader of the Council write to the Minister of State for Social Care:

i)    to confirm as a matter of urgency how much of the £25million each children’s hospice in Gloucestershire will receive in 2024/25 and when they will receive it; and

ii)   to do what they can to remove the inequality in local funding for children’s palliative care so that every family caring for a seriously ill child can access the support and care they need – when and where they need it.