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Volume 1, Issue 1 April 2017 GPCS Volume 1, Issue 1 Page 1 Welcome to... the Gwent Palliative Care Strategy Introduction This Introduction precedes the launch of a Newsletter every two months to keep you updated with the work that is taking place within Gwent Palliative Care Strategy and within each of the eight workstreams. Introduction Gwent Palliative Care Strategy was developed in partnership with Hospice of the Valleys, St. David’s Hospice Care and Macmillan Cancer Services. My Role as MacMillan Palliative Care Service Improvement Lead entails managing the Implementation of the Strategy across ABUHB, SDHC and HOV in the period 2015 to 2018 and embedding it within the Palliative Care Patient Pathway and End Of Life Processes. The Strategy was officially launched on 07/10/2015 at Hospice of the Valleys and the event was well attended by Secondary, Primary, Community Care and Social Services. Implementation of the strategy involves and needs collaboration between Primary and Secondary Care, Third Sector Organisations and Social Services in the implementation of the various Workstreams. I am very keen for the Strategy to be successfully implemented across ABUHB and the partner organisations within the 3 year period 2015 to 2018 and also keen to work in collaboration/partnership with the other specialties, divisions and organisations to achieve that. Therefore I would be very grateful if we can find ways of working together to achieve that. Benefits of the Strategy The main benefit of the Gwent Palliative Care Strategy is that all organisations providing palliative care are working together to provide a seamless, equitable, co-ordinated approach to care delivery across Gwent. This approach prevents duplication and silo working. Other Benefits of the successful implementation of Gwent Palliative Care Strategy include: Care Planning – ensure Advance Care Planning for those who are identified as approaching the end of life (workstream 2) Care Co-ordination – ensure improved communication and co-ordination of care across the whole care pathway including all care settings, improved implementation and reporting tools, promoting integrated priorities for last days of life. (all workstreams) Care environments – enable more patients to be cared for at their chosen preferred place of care; overcoming barriers and managing associated risks. (workstream 6) Place of death – enable more patients to die at their chosen preferred place of death, overcoming barriers and managing associated risks. (workstream 6) Access – increase the proportion of patients with non malignant disease receiving palliative care, ensure 24/7 access to specialist care and support when needed. (workstreams 1, 3, 4, 6) Quality standards – ensure compliance with quality and clinical standards and performance targets. (workstream 7) Training – identify and address staff training needs to improve skills in planning for and delivering palliative care and end of life care. (workstream 5) Engagement in the Research and Development agenda. to ensure that services delivered are evidence-based (workstream 8) Gwent Palliative Care Strategy – An Introduction

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Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 1

Welcome to... the Gwent Palliative Care Strategy Introduction This Introduction precedes the launch of a Newsletter every two months to keep you updated with

the work that is taking place within Gwent Palliative Care Strategy and within each of the eight

workstreams.

Introduction

Gwent Palliative Care Strategy was developed in partnership with Hospice of the Valleys, St. David’s

Hospice Care and Macmillan Cancer Services. My Role as MacMillan Palliative Care Service

Improvement Lead entails managing the Implementation of the Strategy across ABUHB, SDHC and HOV

in the period 2015 to 2018 and embedding it within the Palliative Care Patient Pathway and End Of Life

Processes.

The Strategy was officially launched on 07/10/2015 at Hospice of the Valleys and the event was well

attended by Secondary, Primary, Community Care and Social Services. Implementation of the strategy

involves and needs collaboration between Primary and Secondary Care, Third Sector Organisations and

Social Services in the implementation of the various Workstreams.

I am very keen for the Strategy to be successfully implemented across ABUHB and the partner

organisations within the 3 year period 2015 to 2018 and also keen to work in collaboration/partnership

with the other specialties, divisions and organisations to achieve that.

Therefore I would be very grateful if we can find ways of working together to achieve that.

Benefits of the Strategy

The main benefit of the Gwent Palliative Care Strategy is that all organisations providing palliative

care are working together to provide a seamless, equitable, co-ordinated approach to care delivery

across Gwent. This approach prevents duplication and silo working.

Other Benefits of the successful implementation of Gwent Palliative Care Strategy include:

Care Planning – ensure Advance Care Planning for those who are identified as approaching the end

of life (workstream 2)

Care Co-ordination – ensure improved communication and co-ordination of care across the whole

care pathway including all care settings, improved implementation and reporting tools, promoting

integrated priorities for last days of life. (all workstreams)

Care environments – enable more patients to be cared for at their chosen preferred place of care;

overcoming barriers and managing associated risks. (workstream 6)

Place of death – enable more patients to die at their chosen preferred place of death, overcoming

barriers and managing associated risks. (workstream 6)

Access – increase the proportion of patients with non malignant disease receiving palliative care,

ensure 24/7 access to specialist care and support when needed. (workstreams 1, 3, 4, 6)

Quality standards – ensure compliance with quality and clinical standards and performance targets.

(workstream 7)

Training – identify and address staff training needs to improve skills in planning for and delivering

palliative care and end of life care. (workstream 5)

Engagement in the Research and Development agenda. to ensure that services delivered are

evidence-based (workstream 8)

Gwent Palliative Care Strategy – An Introduction

Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 2

THE EIGHT WORKSTREAMS

The 8 work streams of GPCS are mapped against the 6 delivery themes from the Welsh Government End

Of Life Delivery Plan up to March 2017 are as follows:

(the 3 Workstreams in Plum font are Priority Workstreams for 2015-16 & the 3 Workstreams in Green font

are Priority Workstreams for 2016 – 2017)

Workstream 1

Early identification of patients with a palliative care

need

Workstream 2

Advance care planning

Workstream Lead:

Dr Anish Kotecha, MacMillan GP Facilitator [email protected]

Workstream Lead:

Dr Aoife Gleeson, Palliative Care Consultant, ABUHB [email protected]

The Aim of Workstream (1) is the early identification

of patients with Palliative Care and/ or End of Life

needs in order for them to be offered timely

intervention.

The Aim of Workstream (2) is Facilitation of effective

advance care planning throughout the patients’ illness

with a focus on end of life

Workstream 3 Promoting well organised, co-ordinated care

Workstream 4

Supporting families and carers

Workstream Lead: Stephanie Thomas, CNS, SDHC [email protected]

Workstream Lead:

Clare Walters, Divisional Nurse – Community Division (BG

& Torfaen, ABUHB) [email protected]

The Aim of Workstream (3) is to promote well-

organised and co-ordinated care: Facilitating an

integrated, seamless service across boundaries and

settings

The Aim of Workstream (4) is to support the family and

carers of those who are receiving palliative care, who

are dying or who have recently died, throughout the

end of life care process and in to bereavement

Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 3

Workstream 5 Education & training

Workstream 6

Preferred place of care/preferred place of death

Workstream Lead:

Joanne Lane, Palliative Care Lead Nurse, ABUHB [email protected]

Workstream Lead: Tanya Strange, Divisional Nurse for Primary Care and

networks, ABUHB) [email protected]

The Aim of Workstream (5) is to ensure an

adequately trained workforce who are educated

to deliver excellence, who continuously improve

patient/service user experience and demonstrate

effective leadership

The Aim of Workstream (6) is to promote choice and

facilitate Preferred Place of Care (PPC) / Preferred

Place of Death (PPD)

Workstream 7 Performance & Quality

Workstream 8

Research & Development

Workstream Lead:

Fiona Baldwin, Divisional Planning, Performance

and Partnership Manager & Directorate

Manager for Palliative Care [email protected]

Workstream Lead:

Prof. Simon Noble, Palliative Care Consultant, ABUHB

[email protected]

The Aim of Workstream (7) is to demonstrate a high

quality service through measurable outcomes and

compliance with quality standards

The Aim of Workstream (8) is to engage in the research

agenda and to develop the skills and competencies to

generate as well as implement evidence in practice

If you are interested to know more about or participate in any of the above Workstreams please do

not hesitate to contact me on [email protected]

Please let me introduce myself, my name is Amal Shandall and I started a 3 year post as Macmillan

Palliative Care Service Improvement Lead at the end of June 2015 and my main role is to implement

Gwent Palliative Care Strategy across ABUHB and the partner organisations (Hospice of the Valleys and

St David’s Hospice Care) by the end of June 2018.

Amal Shandall April 2017

Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 4

Aneurin Bevan University Health Board, Hospice Of The Valleys, St David’s

Hospice Care

The Aneurin Bevan University Health Board (ABUHB) specialist palliative care service delivers specialist

palliative care to a population of 639,000 covering Caerphilly, Blaenau Gwent, Torfaen, Newport and

Monmouth across five community localities, three hospital sites, four day care centres and a specialist

inpatient Hospice The Hospital inpatient team also attend Cancer Site Specific Multi disciplinary team

meetings.

The Health Board Specialist Palliative Care Team is comprised of a team of Consultants and doctors in

palliative medicine, a Nursing Team which includes a Lead Nurse, Clinical Nurse Specialists and Health

Care Support Workers, a MacMillan Occupational Therapist and administrative staff. The Consultants in

Palliative Medicine cover Primary and Secondary Care, Community Services and St Anne’s Hospice.

The ABUHB Clinical Nurse Specialists (CNS’s) cover all Hospital Sites.

The Palliative Care Team work closely with the part time MacMillan GP Facilitators and the MacMillan

Palliative Care Service Improvement lead.

A full Multi Disciplinary Team (MDT) structure is in place; at hospital sites, all patients are discussed at

weekly MDT meetings. Community patients are reviewed fortnightly during consultant led case reviews.

All notes are recorded on CANISC.

The Specialist Palliative Care team review patients with malignant and non malignant palliative care

needs. Referrals are accepted on the basis of need, not diagnosis or prognosis. The team also provide a

specialist resource for those patients who have complex and often intractable symptoms, through

assessment, advice and evaluation and provide information to patients and their family about their

disease and support networks available to them.

The Specialist Palliative Care team provide specialist advice and support in end of life care

management and assist other ward-based teams to address the multi-faceted psychosocial issues with

patients and their families. Involvement in complex discharges of palliative patients forms part of the

role of the Specialist Palliative Care team to ensure continuity of care.

The Team’s aim is to provide a service that improves patient quality of life, facilitate patient choice and

treats patients and carers with dignity and respect.

This is achieved by provision of evidence based, individualised, symptom control, complex psychosocial

care, terminal care for all patients with advanced disease and liaison with specialist community

Palliative Care Services.

The team is committed to education, audit, research and supporting ward based health professionals in

their care of patients with palliative care needs.

The service received many awards and has had oral and poster presentations at National and

International conferences.

Working hours: Monday to Friday 9:00am to 5:00pm.

Weekend support is provided by a HPCT CNS covering all hospital sites contactable through hospital

switchboard 9:00am to 5:00pm.

To Contact the Service Monday to Friday

Royal Gwent Hospital and St Woolos Hospital 01633 234934

Ysbyty Ystrad Fawr 01443 802232 / 01873 732643

Nevill Hall Hospital 01873 732777

Out of Hours Advice Service

Available from on call Palliative Medicine accessed through hospital switchboard or Holme Towers

Marie Curie Centre, Cardiff, telephone no. 02920 426000.

Advice is available from Palliative Medicine Consultants 24 hours a day.

Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 5

Hospice of the Valleys and St David’s Hospice Care provide nursing care in the community setting. This

structure can support joint working and communication but can also be logistically demanding and

result in triumvirate working. It requires commitment from all providers and dedicated leadership to

achieve true integration.

Hospice of the Valleys - Originally known as “Hospice of the Marches”, the organisation was started in

Hereford in 1985 by Dr Richard Lamerton and his wife, Patricia. Richard worked in Palliative care and

trained at St Christopher’s Hospice, London under the guidance of Dame Cicely Saunders, a world

renowned expert in palliative care.

Hospice of the Valleys was formalised as an incorporated company in March 1986 and registered with

the Charities Commission in July of the same year, the work of Hospice of the Marches became known

in nearby Blaenau Gwent when a local District Nurse Manager, Jayne Medlicott, heard Richard deliver

a lecture on his work at the Postgraduate Medical Centre, Nevill Hall Hospital in Abergavenny. Jayne

knew, from personal tragic experience, how valuable such a service would be to the people of the

borough and persuaded Richard to extend the service into Blaenau Gwent.

By 2000, the organisation employed several nurses, a social worker and a fundraiser and had changed

its name to “Hospice of the Valleys” reflecting its aim to care for the people of Blaenau Gwent in the

valleys of south east Wales.

Hospice of the Valleys is a registered charity and it is THE Blaenau Gwent Hospice, caring for over 500

patients every year, with a team of specialist palliative care professionals dedicated to providing

hospice care; taking care not only of people’s physical needs, but also providing for their psychological,

spiritual and social needs; helping them to live as actively as possible after diagnosis to the end of their

lives, however long that may be and the highest value is put on respect, choice and quality of life.

The Hospice employs 46 staff, including a range of multi-disciplinary specialist palliative care

professionals, supported by more than 170 volunteers. It is the preferred provider of specialist palliative

care in Blaenau Gwent for Aneurin Bevan University Health Board and provides services on a 24/7 basis.

Because of the high levels of illness in this deprived area, largely as a result of its industrial past, the

Hospice continues to grow and extend its services. In an updated report by the Joseph Rowntree

Foundation (Monitoring of Poverty and Social Exclusion in Wales 2013) the South Wales Valleys continues

to have the highest rate of unemployment in Wales.

Added together with the fact that Blaenau Gwent is one of the most deprived areas in the UK this

greatly impacts on our service, particularly the services of the social workers and welfare rights advisors

whose services continue to be in great demand.

Richard Lamerton’s original vision of high quality holistic Hospice care, providing for the physical, social,

psychological and spiritual needs of patients and their families has been consistent throughout and

remains central to the ethos of the organisation today, some 25 years later.

Working Hours: 9am–5pm Monday to Friday

Address: Hospice of the Valleys, Festival Drive, Ebbw Vale NP23 8XF

Phone: 01495 717277

e-mail: [email protected]

Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 6

St David’s Hospice - In 1979, Heulwen Egerton, a nurse tutor at Newport’s Royal Gwent Hospital set up

the ‘Gwent Hospice Project Group.’ The group was made up of like-minded individuals who were

concerned at the lack of palliative care available to the people of Gwent. From the first year of

operation, when St. David’s cared for six patients, St. David’s has grown to become the UK’s largest

provider of hospice at home care, caring for over 3,200 patients and families every year, at a cost over

£5.8 million.

In September 1979 the Domiciliary Care Pilot Scheme commenced and Miss Egerton was working in a

voluntary capacity. The introduction of a night nursing service in 1984 was followed by the extension of

Domiciliary Care Service to the whole of Gwent in 1986. Miss Egerton was also awarded an MBE for her

work later on in the same year. The Ystrad Mynach Day Hospice opened in 1995 and three years later

Day Hospice patients moved from Cambrian House to the Panteg Day Hospice. New premises were

secured for Panteg Day Hospice in 2000.

The year 2001 marked the opening of a 2-bedded Palliative Care Unit in a nursing home in Newport, the

opening of a Resource Centre in Chepstow, contracted nurses appointed to Hospice at Home service

and the launch of Tele-Medicine video conference project. The Family Support Team was established in

2002. In 2005 a 2-bedded Palliative Care Unit opened, based in a nursing home in Torfaen.

St David’s Hospice merged with a day hospice in Brecon, Usk House, in 2010. In 2011 St David’s

Hospice started providing Hospice at Home services to Mid & South Powys.

In 2012 a new state of the art Day Hospice Centre opened at Blackett Avenue, Newport and re-

opened at Ystrad Mynach Hospital, Caerphilly.

St David’s Hospice has a team of specialist nurses who work throughout the local community. The team

of specialist nurses offers advice and support to patients, families and carers from diagnosis onwards.

The team is also the first point of contact between families and St David’s. They may refer patients to

other St David’s services such as family support, day hospice, hospice at home or complementary

therapies. St David’s nurses also work very closely with patients’ GPs, Hospital Teams and District Nurses

to provide the highest levels of care for patients.

St David’s Hospice provide a Hospice at Home service to enable the patients to remain in their own

homes, and to die at home, if that is their choice.

There are four St David’s Day Hospice Centres offering a range of activities, treatments and respite for

patients and their families and carers: Ystrad Mynach, Panteg Hospital Pontypool, Usk House in Brecon

and Blackett Avenue, Newport

St David’s Hospice offer bereavement support to children via the Unicorn Service. Although

bereavement is a normal feature of growing up sometimes children and young people require

additional help and support to help them cope with the death of someone close to them.

Working Hours: 9am–4pm Monday to Friday

Address: St David’s Hospice Care, Blackett Avenue, Newport, NP20 6NH

Phone: 01633 851051

Email: [email protected]

Volume 1, Issue 1 April 2017

GPCS Volume 1, Issue 1 Page 7

Upcoming Events

Byw Nawr Annual Event – 11/05/2017

Annual Byw Nawr Event (Dying Matters in Wales)

Swalec Stadium Cardiff Thursday May 11th 2017

Living Well, Leaving a Legacy.

What can you do? What can we do together?

http://www.dyingmatters.org/blog/digwyddiad-blynyddol-byw-nawr-annual-byw-nawr-event

Partners’ events - please check the following links:

http://stdavidshospicecare.org/events/

Inflatable 5k – 23/04/2017

Location: Chepstow Racecourse, Chepstow, Monmouthshire, NP16 6BE

Event Type: Inflatable 5k Obstacle Run

For Tickets or more information, please contact:

Fundraising on 01633 851051

Download sponsorship form

To book your place call 01633 851048

http://hospiceofthevalleys.org.uk/support-us/events/

LAP THE LAKE – Sunday, April 23

Location: Parc Bryn Bach, Tredegar

Event type: Six mile race starts at 10:30am Fun run starts at 1pm

Click here to enter online or

Phone 01495 712936 for a form

Coming up in the next Edition of GPCS Newsletter ........

Interesting facts about EOL/ Palliative care

Information from the recently issued all-Wales End of Life Care Annual Report

What end of life care involves

Gwent Palliative Care Strategy updates

The story behind one of the Workstreams (told by the Workstream Lead) – each edition of the

newsletter will contain the story behind one of the Workstreams until all 8 workstreams are

covered

Contact details for:

Hospices in ABUHB area

Community Resource Teams and Local Authority teams in the 5 Boroughs

I hope that you find this newsletter useful and informative. As you are aware, I am very keen for the

Strategy to be successfully implemented across ABUHB and the partner organisations within the 3 year

period 2015 to 2018 and also keen to work in collaboration/partnership with the other specialties,

divisions and organisations to achieve that.

Therefore I would be very grateful if we can find ways of working together to achieve that.

“You matter because you are you. You matter to the last moment of your life. We’ll do all we can, not

only to help you die peacefully, but to LIVE until you die.” Dame Cicely Saunders Founder twentieth

century Hospice movement.