Merseyside and Cheshire Children and Young People’s Palliative Care Zonal Network

Tuesday 16th December 2014

Claire House Hospice

Present / Apologies
Lynda Brook (Chair) / / Norma Currie /
Alison Williams / / Jan Sutherland Oakes /
Fiona Ryan / / Jane Uglow /
Lizzi Aizlewood / / Caroline Boyle /
Bev Walley / / Ann Marie Curran /
Katie Coxhead / / Gill Dixon
Lesley Fellows / / Dianne Corrin /
Helen Dunning /
Viki Higgins /
Fauzia Paize /
Lesa Chappell /
Wayne George /
Zeba Jamal /
Agenda item / Main discussion points / Actions/ outcomes / Owner/ timescale
Welcome and apologies /
  • As above
  • The Network agreed that they were happy to meet alternating Claire House with Zoe’s Place rather than Alder Hey
/ Add Fauzia to the mailing list / LB Mar 2015
Minutes of the last meeting /
  • Minutes of the Merseyside and Cheshire Zonal Network and the End of Life group agreed
  • All the CCGs have or are in the process of confirming commissioning intentions to continue the End of Life partnership arrangements for the next two years. The initial aim had been for full collaborative commissioning but this would have required formal procurement.

Merseyside Children’s End of Life Project and Best Supportive Care for the Dying Child /
  • The CCG managers meeting reviewed End of Life Care project performance reports and discussed these with reference to the service specification. No issues or concerns were identified
  • The number of children accessing End of Life Care Project is lower than expected but the project has facilitated opportunities to work differently across the project footprint including innovative working with children and families who would not otherwise access the hospice.
    A few of the operational meetings have been cancelled recently
  • The CCGs in the project footprint all have slightly different reporting requirements for the project team to report against the service specification. It was suggested that these reports could be aligned with the reporting requirements for the Specialist Palliative Care team at Alder hey
  • The independent evaluation of the project from Edge Hill is now complete and a draft report is in preparation. The outcomes of the evaluation will be an important source for commissioning of the ongoing service.
  • There is a meeting with clinicians and commissioners scheduled for January 2015 to discuss End of Life Care in Cheshire. The plan is for a general meeting incorporating generic community children’s nursing and palliative care and then if necessary two separate working groups will be set up
  • The Greater Manchester Network has undertaken a point prevalence study in Royal Manchester Children’s Hospital to identify inpatients with palliative care needs using the Spectrum of Children’s Palliative Care Needs. It was suggested that it would be useful to repeat this exercise at Alder Hey
  • Alder Hey is currently implementing a new PAS system MEDITECH 6. In the second phase of implementation there will be questions around the 12th activity of daily living based on the Spectrum of Children’s Palliative Care needs. This will help to identify children who may benefit from palliative care support
  • There is also scope to replicate the Stairway project undertaken by Bev Walley and the team from Leighton. This has been very well received and been actively promoted as an example of best practice by the Leighton executive team. The Stairway project was undertaken as a quality improvement project within Leighton hospital undertaken to raise the profile and evaluate understanding of paediatric palliative care. Professionals from the neonatal, paediatric and adolescent areas were asked to complete a series of questions based on the Together for Short Lives Care Pathways. The rationale for the project was that you cannot take the elevator to success in paediatric palliative care you need to use the stairs. In this case the “stairs” are represented by the stages in the Together for Short Lives Core care pathway.
  • Respondents included band 6 and 7 nurses, consultants and community children’s nurses. The team found that professionals were reasonably confident about breaking bad news and end of life care but less confident in other aspects such as planning to go home or co-ordination of care. Neonatal staff didn’t perceive a role in multidisciplinary team meetings or discharge planning or considering an alternative setting for care when babies were dying. Interpretation of palliative was mainly focussed on the last hours and days of life.
  • Following the Stairway project the Leighton team are developing an education and training programme including identifying children who may benefit from palliative care using the Spectrum of Children’s Palliative Care needs. Transition to adult services was also recognised as an area where improvement was necessary and a working group has been set up to look at CQC recommendations an improve transitional care.
  • It was discussed that there are important parallels when looking at transition from neonatal care to general paediatrics and from paediatric medical specialties/ long term conditions to adult services. These include recognition that patients are moving from Specialist Commissioned to CCG commissioned services.
  • There is a real challenge in getting Specialist and CCG commissioners together to discuss collaborative commissioning. On an individual level parallel planning can help with this. On a more strategic/ population based level collaborative work between networks for example the Neonatal and Palliative Care Networks can help facilitate.
  • It was noted that for neonatal palliative care the services and pathways generally exist but are not being consistently utilised.
/ Forward Alder Hey Specialist Palliative Care Team reporting schedule
Forward the executive summary/ abstract from the independent evaluation of the End of Life Care project when this is available
Repeat the Spectrum of Children’s Palliative Care prevalence study
Circulate the Stairway Project report / LB Mar 2015
JSO/LF Mar 2015
LB/FR/HD Jun 2015
BW Mar 2015
Implementation of the Partnership Working for End of Life Care at home policy /
  • Network members were unsure whether they had received the final version of the policy
  • The aim was to implement the Policy at Alder Hey but unfortunately not feedback was available from the Specialist Palliative Care team. It seems likely that this has not progressed
  • It was agreed that specific people within each team or service in the Network (including neonatal and general paediatrics) would need to be tasked with ensuring implementation of the Policy within their organisation, team or service
/ Resend the final version of the Policy
Request progress report
Identify organisation/service leads for implementation / LB Mar 2015
LB Mar 2015
LB Mar 2015
End of life care plan/ Chester Palliative Care Pathway and links with “Journeys” /
  • Jan has had some paperwork back from MCPCIL. They have a proposed way to progress the Best Supportive Care for the Dying Child work across the network
  • Viki is still working on local end of life care guidelines for the Countess of Chester. These are mainly around pain and symptom management, and checklist for inpatients at the end of life. It was suggested that the guidelines should make reference to the doses in the APPM Master Formulary which is more comprehensive and more appropriate for end of life care than the BNFC.
  • The Chester guidelines are aimed at providing practical guidance for end of life care on the ward including children with previously recognised life threatening or life limiting conditions and those suffering from a previously unanticipated or acute illness. Separate guidelines will be for neonatal end of life care
  • There was some discussion that different consultants have different ways of managing end of life care in the unit and that this poses specific challenges.
  • It was noted that the West Midlands Toolkit includes e-learning modules for end of life care.
/ Set up a small group meeting to discuss next steps
Review West Midlands e-learning resources
/ JSO Mar 2015
JSO/ All Mar 2015
Strategy project updates / Parent Voices Count
  • Lizzi explained that Parent Voices Count is a group of parents or carers who have experienced caring for a child with a life threatening or life limiting condition. Parent Voices Count is working with the Network to use their experiences to improve services.
  • Parent Voices Count has produced their first Newsletter. The plan is to make this a regular publication
  • The main focus for Parent Voices Count for the 2015-17 Network Strategy is raising awareness of the group and increasing representation at meetings and through other forums
  • Parent Voices Count is also working on an A-Z guide produced by parents for parents and providing helpful hints and tips related to having a child with a life threatening or life limiting condition. This project also has a secondary objective of reaching outside the immediate Parent Voices Count group to engage with new families.
  • Parent voices count is also working on a Directory of Services aimed at families rather than professionals but with similar content to the Northwest Directory of Children’s Palliative Care Services. There was some discussion that there are already a range of directories aimed at families on the internet particularly because Local Authorities have to make information on the services they provide for children with disability available as part of the Local Offer. It is hoped that the Services Directory will empower families to find and if necessary request referral to the services they need. Kids-up-North
  • There are response cards for the A-Z guide available and details are also on the Parent Voices Count website.

Visioning event “the perfect integrated children’s palliative care service”
  • This has been discussed at previous meetings. The scope of the event would include medical cover for the network, patient flows including referrals, minimum dataset, reporting and governance systems. The event would be more specialised that the locality workshops but include both professionals, commissioners and service users
  • It was agreed that the workshop was good idea but not a priority and should be revisited again in around 6 months time
/ Schedule for discussion at future meeting / LB Sept 2015
Alder Hey Locality workshop 2nd December
  • Fiona has been leading on developing the Locality Workshop on behalf of the Zonal Network. The workshop will now be held in June as it was felt that winter pressures would make it very difficult for nursing staff and junior doctors to be released to attend the day.
  • A core group of professionals including representatives from PICU, HDU, the wards, CCG, community matrons and hospices are meeting regularly to plan the day. The next planning meeting will be on 27th January.
  • The programme will have an Alder Hey focus and concentrate on addressing the needs of professionals who have had little palliative care training and are finding palliative care anxiety provoking. A flyer is now available.
  • The agenda as it stands includes an introduction from the Trust CEO Louise Shepherd, cases studies, an outline of the work of the Specialist Palliative Care team and hospices, communication and breaking bad news, child and family choices. There will be a “market place” at lunchtime for teams and services to provide information about their services. There may also be scope to raise awareness of the Journeys suite of documents to support children’s palliative care.

Other project work / NWAS DNA-CPR
  • The Northwest unified DNA-CPR Policy and Advance Care Plan work continues. There are three strands to the project: development of the policy and documentation, local implementation within each Trust or service and supporting education and training. The children’s steering group is chaired by Peter-Marc Fortune from Manchester PICU.
  • The team has recognised the need to undertake further awareness raising and it was suggested that half day workshops were offered to each of the DGHs within Merseyside and Cheshire
  • With regard to local implementation the Merseyside and Cheshire Advance Care Plan may be slightly different to the overarching Northwest model because it currently includes more detailed information on medication, feeds and things like tracheostomy tube size or gastrostomy tube size
  • Implementation models will also vary slightly across the Network depending on whether the master document is being stored in paper or electronic form.
  • Further detailed discussion is needed at the next meeting when the final documents from the overarching children and young peoples advance care planning collaborative are available
  • The document also needs neonatal and/or baby clearly added in so that neonatal practitioners will be confident to use it
/ Forward half day awareness raising programme
Forward final overarching documents and ensure time for detailed discussion at next meeting / LB Mar 2015
LB Mar 2015
Network bereavement policy/ guidelines
  • To be carried over to the next meeting

Medical cover for the network
  • Lynda has drafted an outline paper detailing options for medical cover for children’s hospices which is awaiting sign-off from Claire House and Zoe’s Place.
  • Discussions have started with the Eaton Road Medical Practice to provide GP cover for the hospice
  • Understandably Alison expressed concern that at present if a patient at Zoe’s place needs medical review they are taken to A&E at Alder Hey. Alison agreed to support Zoe’s Place’s approach to the CCG/ Local GP practice for GP cover
  • Claire house team commended that they very rarely need to use GP out of hours services even for end of life care, if a good symptom management plan is in place with anticipatory prescribing and a GP visiting in normal working hours.
/ Circulate paper when signed off / LB Mar 2015
Northwest Network Strategy 2015-17 /
  • The Network strategy was outlined. The main strands comprise engagement of strategic leaders, frontline professionals and families, education about what children’s palliative care means for these groups and empowerment through the two proceeding steps.
  • The key tasks for 2015 are to engage with Strategic leaders in Merseyside and Cheshire and across the Northwest to raise the awareness of children’s palliative care and emphasise that this is much more than end of life care. This needs to be followed by a specific request for funding particularly to support the work of Parent Voices Count and the Northwest Database of Serious and Potentially Life Threatening Conditions as well as support for professionals to receive education and training.
  • It was noted that the Northwest Children’s Palliative Care Network does not receive any recurring funding unlike the other Specialist Commissioned Networks such as Neonatal or Long Term Ventilation. Greater Manchester and Lancashire Strategic Clinical Network has also provided a small amount of funding to the Children’s sector for End of Life Care Education and training but this has not been replicated in Merseyside and Cheshire
  • Parent Voices Count, as outlined above, is working on increasing engagement of Parents and Carers.
  • Lisa Kaufmann is pulling together a working party to pull together Education and Training standards for the Network based on previous local and national work. Members of the Merseyside and Cheshire Zonal Network will be invited to be part of this group. The draft standards will then go out to the whole network for consultation.
  • Next steps are to draft a more detailed workplan for the Network Strategy, identifying leads for each workstream and local engagement
/ Develop and circulate Strategy Workplan / LB Mar 2015
Neonatal palliative care /
  • The Northwest Neonatal Network began working with the Northwest Children’s Palliative Care Network in September with the aim of producing comprehensive neonatal palliative care referral pathways and guidance to be implemented across the whole Northwest region. This was followed recognition that neonatal palliative and end of life care could be improved and that neonatal units were frequently not considering or interfacing with wider palliative care and bereavement services such as children’s hospices that may be able to benefit babies and their families
  • The project is being chaired by Karen Hughes with support from the Neonatal Network Facilitator Caroline Travers.
  • Seven working groups have been identified as follows:
  • Care planning – Lead Lydia Bowden, Palliative Care Network link Anna Oddy
  • Family Care – Lead Kylie Hodges, Palliative Care Network link Shirley Potts
  • Transport – Lead Debbie Massey, Palliative Care Network link Jo Rigg
  • Pain and comfort – Lead Fauzia Paize, Palliative Care Network link Suzie Holt (nominated in her absence)/ Lynda Brook
  • Staff – Lead Anna Spicer/ Michaela Barnard, Palliative Care Network link also Michaela Barnard and Jan Sutherland-Oakes (nominated in her absence)
  • Documentation and communication – Lead Jaqui Morgan, Palliative Care Network link Lis Meates
  • Hospice and community – Lead Karen Hughes, Palliative Care Network link Adrienne Hickman and Flo Berquist (Self nominated but unable to attend NW Network meeting on 5th December)
  • These have been tasked with reviewing a wealth of information and guidance obtained from other teams and services across the UK and making recommendations for core documents to be adapted and adopted by the Northwest. It is envisaged that this resource would be available ideally in electronic web-based format but recognised that in some areas a paper version will also be needed. Ideally the Neonatal Palliative Care Guidance would interface closely with the Journeys suite of documents to support children’s palliative care.
  • The number of people from the Palliative Care Network involved in the individual project groups is not fixed and additional input will be welcome subject to approval of the individual workstream leads

Transition to adult services /
  • The Healthy Liverpool programme, led by Liverpool CCG but including all of the Liverpool City footprint including Local Authority, aims to improve the health of the Liverpool population with a particular focus on long term conditions.
  • There is a transition to adult services workstream within the Healthy Liverpool programme. This is working closely with Alder Hey to identify young people with complex long term conditions who require transition to adult services, develop an overarching Transition Policy Framework so that there is some consistency across the city and to support development of appropriate target services in the adult sector for young people who are currently stuck in children’s services.
  • The Merseyside and Cheshire Strategic Clinical Network is also undertaking work on transition to adult services. We do not have detailed information at this stage regarding the key deliverables from the SCN work or how this work could or should interface with the Healthy Liverpool work
  • The Countess of Chester team have undertaken work on transition to adult services for rheumatology patients. They are seeking funding from commissioners to support this. There are established transition pathways for epilepsy and pathways in development or in place for other specialties including respiratory. Sarah Jackson is working to progress transition for complex neurodisability patients which includes engagement of GPs. John Gibbs is leading with this together with the Lead Nurse for Children’s Services within the Trust. Funding is one of the reasons why transition to adult services is not always optimal
  • CLIC Sargent provide support for young people up to their 24th birthday but there is no equivalent service beyond this for young people to transition into
  • David Pastor (Claire House CEO) and Jan Sutherland Oakes are linked into the Northwest Transition Taskforce facilitated by Together for Short Lives

Updates locality feedback / Brief updates were provided as time was limited at the end of the meeting
  • Wayne reported that there have been a lot of changes in the CLIC Sargent team recently. Wayne is acting up for Tracey Cosgrave who is also acting up in a regional post.
  • Helen reported that the Alder Hey Specialist Palliative Care team has recently appointed Donna Rodaway to the Band 6 secondment post. Donna has worked in HDU previously and is due to start with the team in February. The band 7 permanent post within the team is now vacant and will be advertised shortly
  • Lizzie asked to be notified of any education and training or other events to put on the Newsletter and website
  • Building work is complete at Claire House

Date and time of next meeting / 17th March 09:30 – 12:30 Zoe’s Place

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