Scottish Children & Young People’s Palliative Care Network

Note

Tuesday 03rd March 2020

10:30am – 12:30pm

Meeting held at:University Hospital Crosshouse

VC from:

Robin HouseRachel House

GGCTogether for Short Lives

CO-CHAIRS: Dr Sarah Coy & Clare Smillie

Attendees:Crosshouse: Dr Sarah Coy, Clare Smillie, Aileen Crichton, Joanne Henderson, Arleen GibbonsRachel House: Danielle Harley, Jayne Grant, Susan Smyth, Kirsteen Cowling, Derek JollyRobin House: Kate McCusker, Nicky BridgesGGC: Diana McIntosh, Johnny Downie, Jackie ReillyTogether for Short Lives: Dan Steer

Apologies:Salena Begley, Yvonne Caie, Victoria Causer, Elizabeth-Anne Cunningham, Elizabeth Gillespie, Libby Gold, Caroline Porter, Anne Wilson

Welcome, introductions and apologies:Sarah Coy welcomed all to the meeting, introductions were given and apologies noted.

Notes of last meeting:Note agreed as a true reflection of the meeting on Tuesday 10th December 2019.

Matters Arising:Butterfly fund, It is believed the pilot is still ongoing, Caroline Porter to confirm.

Discussion Topics: 1. CHAS Community Pharmacy Network

Kate McCusker, Lead Pharmacist presented on CHAS Community Pharmacy Network

1 year pilot launched January 2020 within NHS Forth Valley, the first of its kind for children in the UK. 14 community pharmacies in Forth Valley who are part of the existing adult palliative care network aim to support children & young people with life-shortening conditions and their families by providing access to specialist medicines and paediatric palliative care advice within the local community. Once the network has been established within Forth Valley, CHAS aim to spread this network across Scotland.

Discussion Points: The number of children with life shortening conditions in Scotland continues to

increase with almost 16,000 in 2017. 64% of those children had no hospital contact in the past year CHAS support the most complex children but only have capacity to support 465

children, 3% of the 16,000 Address the disparity that exists in the community between children and adult

services NHS Forth Valley are relatively small/medium health board and were keen to be

involved with the pilot Conversations ongoing with other health board areas, NHS Lanarkshire keen to

move forward with the pilot The impact on families to be evaluated Pilot does not relate to only end of life, any child with life shortening condition to

be identified by pharmacies

2. Enhancing Children’s Palliative Care Services using Project ECHO

Danielle Harley ECHO Coordinator and Jayne Grant ECHO Facilitator presented on Enhancing Children’s Palliative Care Services using Project ECHO

Project ECHO (Extension of Community Healthcare Outcomes). First launched in 2003. It is a national and globally recognised model of medical education and care management that empowers clinicians to provide better care to more people. It increases access to speciality treatment in rural areas by providing ongoing tele-mentoring to equip primary care practitioners with the knowledge they need to provide high quality speciality care.

Discussion Points: Provides a safe space, support, knowledge and confidence Everyone is a teacher and learner

Sarah Coy very positive about the project, she can join from home, or within hospice/hospital. Simple to use. She also encourages students/trainees to use and become familiar with the system

Currently 2 cohorts Diana McIntosh has set up education sessions which are not consistently

attended Very positive feedback on the project as well as praise for the

presenters/speakers Limited to approximately 12/15 sites in the community. Too many sites gives

limited time to speak and can also cause IT issues Open to new suggestions Danielle to confirm if CPD points can be applied for which might increase future

sign up

Service Updates:

1. CHAS

Maria McGill retired from CHAS 31 January 2020. Her successor, Rami Okasha, will continue to work with staff and volunteers to reach more children and families. He will also continue to ensure that CHAS works effectively with all of its partners across Scotland.

The new CHAS Strategic Plan is almost complete. Staff, volunteers, families and our external colleagues have been involved in its development. Once it is finally agreed internally we will communicate externally our plans to reach more families.

CHAS has been gifted the beautiful Ardoch Estate in West Dunbartonshire. This is an amazing place for families, staff, volunteers and service partners. It will help us support more families in new and diverse ways.

A nursing text entitled ‘Neonatal Palliative Care for Nurses’ was launched at the Neonatal Palliative Care Conference, Leeds in February 2020. It contains a chapter written by Evelyn Rodger, Carla Halkett, Pat Carragher and Edile Murdoch. It explores circumstances when a baby in a neonatal unit may be considered to have palliative care needs and highlights some examples of support that can be offered to the baby and family residing in Scotland. Collaborative work across disciplines and services in promoting quality care is highlighted as a key aspect.

An ECHO (Extension for Community Healthcare Outcomes) community of practice called ‘Young Adults and Transition and Beyond’ has been developed with various adult hospices and staff from NHS Boards across Scotland. Twenty nine participants have signed up for it.

ECHO is a hub and spoke knowledge sharing network which is led by experts using multi-point video conferencing to conduct virtual clinics. It allows practitioners to learn from speciality centres which it turn increases access to quality healthcare for patients in their own community in a culturally appropriate setting.

Unfortunately we still have not yet managed to recruit a DCN for Highland. Discussions continue with our Highland colleagues.

2. SPENS The last meeting was 19 December 2019 at Rachel House.

Libby Gold fed back to the network from the RCN Children and Young People Nurse Leaders’ Summit, London 6 December 2019 that she attended on behalf of Helen Bauld. There were representatives from England, Scotland, N Ireland and Wales. Five key issues that had arisen from an RCN survey were discussed:

Safe staffing Leadership Education Clinical Research

The group was asked to identify the key issues and opportunities under these headings. Fiona Smith and Dave Clark presented these to the RCN forum groups in February 2020. Actions will be fed back. The SPENS annual conference entitled: ‘Choices and Challenges for Children’s Nurses: Promoting Resilience in Children and Young People’ is being held Tuesday 3 March 2020 in Edinburgh.

3. NHS Sites

Ayrshire & ArranAileen Crichton advised that they are currently recruiting to nurse bank to sustain service of providing end of life care at home.

BordersPaediatric service review ongoingIntroduction of attend anywhere clinics/consultationsEstablish more community bases currently work in progress

Glasgow50+ patients seen since September 2019Teams are embracing the service and benefitsAttend anywhere introduced which works well with very positive feedback

4. Children’s Health ScotlandNo updates

5. Together for Short Lives Improving transitions for young people

The Improving Transitions for Young People Fund is our funding programme, seeking to address the cliff edge in care experienced by young adults in their transition from children’s to adult services

The fund supports innovative projects taking a fresh approach to supporting seriously ill young people. With a focus on encouraging co-ordination between services and engaging with care professionals, the fund helps to test these new approaches and smooth the process of moving to adult services, so young people can focus on what’s important to them

The key beneficiaries are teenagers and young adults aged 14-25 with a life-limiting or life-threatening condition, and their families

The Improving Transitions for Young People Fund is supporting ten projects – two that began in late 2017 and a further eight that began in late 2018.  All projects are undertaking a local evaluation that will inform an overarching national evaluation.  An evaluation report of the Fund will be published in Autumn 2021

This is me

We’ve launched a special creative engagement project for young people with life-limiting conditions. It’s an opportunity for young people to express themselves through creative arts – writing, drawing, photography or spoken word, anything that helps young people to explore their identity and tell their story in a meaningful way

We’re going to be sharing the This is Me exhibition at our conference in March. Entries close on 9th March

Hospice UK, Marie Curie and Sur Ryder

We have linked up with Hospice UK, Marie Curie and Sue Ryder to look at reviewing and publishing new research governance guidance for the hospice and palliative care sector

NHS England/Improvement match funding

In December 2018, Simon Stevens, Chief Executive of NHS England, was quoted in an NHS England statement which committed NHS England to match fund increases in children’s hospice charity funding made by CCGs by up to £7million per year, in addition to the Children’s Hospice Grant

However, in the Long-Term Plan, published a few weeks later, NHS England changed the wording of the commitment to include other palliative care services

NHSEI has informed the successful CCGs how much they are likely receive next year. However, it not make this public until it has officially issued the allocations from the start of the financial year in April. We recommend that hospices wishing to know the outcome of the bids they were involved in contact their CCGs to find out more. Alternatively, Andrew Cheesman at NHSEI has let us know that he is willing to take queries from members.

Officials have not made any final decisions about 2021/22 and beyond; it is possible therefore that CCGs which did not submit a bid for 2020/21 may have an opportunity to do so for future years. NHSEI also say that they may reduce money allocated to CCGs in future years if they have find that they have not invested their half of the match funding.

Meanwhile, NHSEI is continuing to develop the new children's palliative care commissioning framework. The specialised service specification is yet to be finalised amid continuing discussions about what the NHSEI specialised commissioning team and CCGs should be responsible for paying for. We will let members know as and when there is news to share on this. 

Children’s hospice grant

We welcome NHS England’s recent decision to ring-fence and increase the Children’s Hospice Grant to £25 million by 2023/24

Non-recurring £25 million

On 20 August, 10 Downing Street announced that it would commit the additional £25 million with the aim of keeping hospices open and improving the quality of end of life care. It also said that the money will support the sector in relieving workforce pressures as well as introducing new services, such as out-of-hours support, respite care and specialist community teams.

The £25 million in 2019/20 will be funded from existing budgets and in future years will be sustained at appropriate levels through mainstream NHS funding. The Prime Minster said that this was just the beginning of an important programme of work.

AOCB : Dates and venues for remainder of 2020 to be arranged. Sarah Coy suggested alternating between Tuesday and Thursday to hopefully encourage new faces to attend. Any suggestions for future topics to be emailed to Sarah and Clare.

Meeting Dates for 2020 (Tentative) Thursday 11th June 2020, 10:30am (CHAS hosting) Tuesday 08th September 2020, 10:30am – (Borders hosting) Thursday 10th December 2020,10:30am - host to be arranged