One of our priorities, as outlined in End of Life Palliative Care Delivery Plan 2016 -2020, is ensuring that Advance Care Planning is promoted and is facilitated effectively to enable people to express their wishes and care preferences.

Members of the Specialist Palliative care team, including CNSs and doctors, carry out ACP as part of their role.  In addition the chronic conditions ANPs, Dementia Specialist Nurses and some other site specific specialist nurses are involved to some extent in ACP, particularly in relation to the statement of wishes and preferences which is available on the Hywel Dda University Health Board intranet. Hospice Day Centre staff are starting to complete ACPs with people attending the day centres.

ACP training and awareness raising sessions particularly around Dying Matters week are delivered through the Health Board in Primary and Secondary Care and to Care Homes.

LD and Mental Health services are engaged and working closely with SPCT in raising awareness.  However we are aware that further work is required in relation to this patient group.

Initiative	GP cluster funded ACP project – Paul Sartori (see Attachment 1)
Aim	To provide an ACP service within Pembrokeshire. The project aims to ensure that patients maintain their dignity and autonomy whilst being offered support with care directed by the patient’s wishes
Funding Identified and Source:	GP Cluster funded
Provider(s):	North GP cluster £61,274 South GP cluster, up to £14,000, numbers of referrals allocated to each practice. 56 in total.
Start Date (actual or planned):	Current on going until March 2019
Progress to date:	3 Registered nurses delivering ACP service, working a 1.5 WTE post.
Capital/Non-Recurrent Costs:	Approx £75,274

Initiative	Two Free Full Day Workshops entitled “ Handling Difficult News, Uncertainty and Advance Care Planning in Paediatrics” Underpinned by Paediatric Advance Care Plan E-Learning Course accessed via ESR, NHS Wales
Aim	To coordinate and  implement a consistent approach to Advance Care Planning in Children and Young people 0-18yrs within HDUHB and throughout Wales
Funding Identified and Source:	End of Life Care Board via HDUHB / Paediatric Palliative Care All Wales Managed Clinical Network
Provider(s):	Hywel Dda Paediatric Palliative Team in association with the All Wales Managed Clinic Network for Paediatric Palliative Care
Start Date (actual or planned):	First workshop planned for 21st November and second in 2019
Progress to date:	Venue, equipment hire and refreshments. Administration: co-ordination of advertising, bookings and programme, liaison with speakers. Fees for speakers travel and accommodation costs Production of printed materials handouts Miscellaneous expenses
Capital/Non-Recurrent Costs:	Non-Recurrent Cost: winter pressure funding £2855

Initiative	Specialist Palliative Care Clinical Nurse Specialists discussing and completing Do Not  Attempt Cardio-Pulmonary Forms for Adults in Wales. CNS team in Carmarthen piloted the initiative and following successful evaluation rolled the pilot out to include all SPCT CNS’s in Hywel Dda.
Aim	To provide timely discussions with patients and those close to them. Nurse led policy and education development for nurses competence in completing DNACPR forms
Funding Identified and Source:	Training delivered in house
Provider(s):	Joint working between SPC CNS team and Resuscitation nurse lead
Start date (actual or planned)	2017
Progress to date:	The pilot has been extended to include the training of 3 District Nurse Team Leaders in Carmarthen and 3 Clinical Nurse Specialists including COPD, Interstitial Lung Disease and Liver CNS
Capital/Non-Recurrent Costs:	None

Initiative	Ceredigion Specialist Palliative Care Poetry Residency – a collection of bilingual poems capturing the feelings and emotions
Aim	To provide a collection of bilingual poems to be used as a starting point in training days with all health, social care and third sector staff to discuss the subject of end of life and mortality. A resource for patients and carers and  the public to be used broadly as a creative tool to discuss end of life care plans.
Funding Identified and Source:	Literature Wales: £1,700 Byw Nawr: £500
Progress to date:	Poems are available online http://www.literaturewales.org/our-projects/lit-for-wellbeing/poetry-residency-palliative-care-unit/ and in booklet format, and will be freely available to share and use across Wales. Evaluation of project is ongoing.

Initiative	Palliative Care Core Study Day
Aim	Education. Topics covered including ACP, Anticipatory Care Planning, Advance Statements, ADRT, LPA, DNACPR
Funding Identified and Source:	End of Life Care Board via HDUHB / Paediatric Palliative Care All Wales Managed Clinical Network
Provider(s):	HDUHB Specialist Palliative Care Team
Start Date (actual or planned):	Ongoing – 3 monthly
Progress to date:	Ongoing
Capital/Non-Recurrent Costs:	None

Initiative	Compassionate Communities Pembrokeshire
Aim	This is a Community Development approach to Advance Care Planning and is about facilitating activities in Communities to enable people to think about their care plans for the future and to work collaboratively with their Health Professionals.
Funding Identified and Source:
Provider(s):	Community Choice and Inclusion
Start Date (actual or planned):	The project has been running for 2 years and started in September 2016
Progress to date:	The activities range from Compassionate Film Clubs, Compassionate Conversation Pop-Up Cafes, Advice sessions in GP surgeries, Coffin Making workshop!! (a great way to engage men in the conversation!) and workshops to write down your Statement of Wishes. We are seeking to extend our work and share our learning with other groups around Wales to enable them to develop this collaborative approach and if you want to know more.
Capital/Non-Recurrent Costs:

Compassionate Communities Pembrokeshire NOS-DA: (*)  A Compassionate Friends Project

The main aim of our project is to address the emotional support needs of people dying alone with limited or no family friendship networks and living in the area around Pembroke/ Pembroke Dock and hinterland. To do this, we aim to address one of the deepest and most challenging issues affecting this group of people living in end of life care, namely, social isolation and loneliness.

 It is estimated by Age Cymru that 50,000 elderly people living in Wales are socially isolated (a). Among those isolated, many have life limiting conditions and consequently die alone. Anecdotal evidence would suggest that in Pembrokeshire between 80 and 120 patients a year die in a Hospital or Care Home environment without any family or friendship Networks (b).   

Our NOS-DA, Compassionate Friends Volunteer project aims to put an end this sad and desperate occurrence in Pembrokeshire by setting up a Pilot initiative and working in the area around the South Pembrokeshire Hospital in Pembroke Dock to develop a unique and compassionate Educational Volunteer Training programme for a group of 6-8 Compassionate Friend and to support them overtime to make bonds of friendship and address the needs of some of the most vulnerable people in our communities.

The vision for the NOS-DA Volunteer project is to provide one to one compassionate support by listening, comforting and providing companionship for people who have been identified as being in the last few months and weeks of life, particularly for those with few or no visitors who would otherwise be alone. The emphasis is on providing emotional support by ‘being there’, alongside working collaboratively with Ward staff, District Nursing Teams, Nursing Homes, Paul Sartori and the South Cluster of GP practices among others. Above all, the Compassionate Friend Volunteers can ensure the patient knows they are cared for emotionally, valued and will not have to face the prospect of dying alone and in isolation.

To do this we are currently scoping out a training and operational plan and a funding strategy to initiate the project over a 15 month timescale and to use the learning outcomes to develop a rolled out programme to cover other parts of Pembrokeshire and put an end to loneliness at end of life.

Further information via Luke Conlon, (Director, Community Choice and Inclusion)

(*) 

NOS DA is the Welsh word for Good Night and in English stands for No One Should Die Alone. This really encapsulates what we are trying to achieve.