cardiff & vale university health board end of life ... · end of life delivery plan – cvuhb...

CARDIFF & VALE UNIVERSITY HEALTH BOARD

END OF LIFE DELIVERY PLAN

2016

End of Life Delivery Plan – CVUHB Health Board

Page 1 of 25

1. BACKGROUND AND CONTEXT “Together for Health – Delivering End of Life Care” was published in 2013 and provides a framework for action by health boards and NHS trusts working together with their partners. It sets out the Welsh Government’s expectations of the NHS in Wales in delivering high quality end of life care, regardless of diagnosis, circumstance or place of residence in Wales. The Delivery Plan sets out clear ways in which the voice of the individual, supported by those closer to them, is heard and respected at the centre of the services they need. It sets out:

Delivery aspirations we expect

Specific priorities for 2013-2016

Responsibility to develop and deliver actions

Population outcome indicators and NHS performance measures What do we want to achieve? The Delivery Plan sets out action to improve outcomes in the following key areas:

Supporting living and dying well; informing and supporting patients to make arrangements in advance for the end of life

Detecting and identifying patients early; people with palliative care needs are identified early to enable the best care to be planned in advance

Delivering fast, effective care; People receive fast, effective person-centred care in order to maintain quality of life for as long as possible

Reducing the distress of terminal illness for patients and their families; patients entering the terminal phase of their illness and their families feel well cared for

Improving Information

Targeting research 2. Cardiff & Vale University Health Board’s Delivery Plan The Cardiff & Vale University Health Board (CVUHB) produced its first delivery plan in 2014. In last year’s delivery plan we set the following priorities:

Develop GP Facilitator posts for Cancer & Pallative Care

Fund all Nursing Home clinical leads / matrons to complete the End of Life Care module

Develop the hospice at home health care support worker (HCSW) team

Establish the clinical reference group for palliative care

Increase numbers of patients dying in their preferred place of care


Page 2 of 25

Considerable progress has been made against these priorities as highlighted below:

GP Facilitators are in post and programme of work established.

22/25 Care Homes have engaged with the End of life Module programme. 17 matrons have completed the module.

A Hospice at Home HCSW team has been commissioned via an existing contract with Marie Curie and is due to commence in January 2016.

A Palliative Care Reference Group has been established and includes representatives from all providers and actively engaged in audit, clinical governance and quality improvement projects.

Increased numbers of patients are being supported at home through Continuing Health Care. 100% of patients who wished to remain in Care Homes for the last days of life, did so in 2014-15 in some Homes within Cardiff with the support of George Thomas Hospice Care (GTHC)

In delivering end of life care services, there are a number of service improvements that we have implemented locally that have had a real impact on patient care. Examples of this include:

Improved fast track discharge pathways for patients wishing to return home from hospital or hospice, resulting in more timely discharges.

Third Sector support for patients through their Welfare Rights officer and their Social Worker with access to grants and support for housing, carers and the extra cost cancer and terminal illness can bring.

We have responded to the extra demand for counselling especially for young people and children. Throughout 2015, 46 referrals were seen by one community provider alone.

A Third Sector team are now well established to provide support to carers in their own homes, for example, sitting with patients in order for the carer to have some time out or attend their appointments etc.

3. The Vision: For our population we want:

People in Wales to have a healthy, realistic approach to dying, planning appropriately for the event

People dying in Wales to have access to high quality care wherever they live and die whatever their underlying disease or disability, devoid of any prejudice in relation to their personal situation

We are monitoring three high-level outcomes to track over time how well we are doing. These are:

whether people are cared for and die in their preferred place of care, whether that is at home, in hospital, a hospice or in a care home;


Page 3 of 25

the number of individuals who receive specialist palliative care prior to their death and recognising the inevitable closing of their life; and

what individuals and their families say about the care they receive.

We are identifying ways to improve the recording of preferred place of care on CANISC including the development of shared palliative care assessments to be used by all providers across Cardiff & Vale to improve communication and prevent repetition for patients.

The community Macmillan GPs are working with Care Home staff to improve the uptake of Advanced Care Plans to support patient’s wishes and avoid inappropriate admissions to the acute areas.

In 2014-15, 83% of urgent referrals were seen within the two day target in Cardiff & Vale compared to the national average of 71%.

In 2014/15, 320 returns of ‘I want great care’ feedback were returned with an average score of 9.48 compared to the average for Wales of 9.42. We are continuing to look at ways to increase the numbers of feedback.

George Thomas Hospice Care undertake an additional annual patient satisfaction survey sent to all patients and the named carer of an deceased individuals – 35% were returned, of which 90% of people reported that they were very satisfied with the quality of care delivered.

Marie Curie also carry out patient satisfaction surveys on all their services in addition to the ‘I want great care’ survey – results awaited.

4. The Drivers: There are clear reasons for end of life care remaining a top priority in Wales. Everybody is affected by the death of a family member or friend who has gone through a final phase of illness. Not only do people need rapid assessment and the best possible treatment, they also need ongoing support and information about choices when treatment may no longer be effective. The NHS must be able to explain clearly the options and their implications to an individual and their family at the end of life. The NHS in Wales must be committed to taking the lead, working with its partners, to delivering this at every stage of the patient journey. The recently issued all-Wales End of Life Care Annual Report reported that:

Each year around 32,000 people die in Wales, around 250 of these are children and young people; this equates to 88 people a day. More than half of these die in hospital.

Of these 32,000 people, over 20,000 are aged 75 or over.

The Office for National Statistics1 predicts that the number of deaths in Wales will increase by almost 10% to around 35,000 by 2037.

The majority of deaths follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia.

1 http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-318453


Page 4 of 25

About 39% of deaths occur in people’s usual place of residence, either at home (22%) or in a nursing / care homes (17%). 56% of deaths occur in NHS hospitals.

A survey undertaken by Demos on behalf of Sue Ryder: “A time and a place”2 considers the relationship between people’s preferred place of death and the medical, environmental, personal and practical outcomes viewed as important at the end of life. The research indicated that people’s priorities for their end of life are:

To be free from pain and discomfort (78% of respondents said this would be important to them).

Being surrounded by their loved ones (71%).

Having privacy and dignity (53%).

Being in familiar surroundings (45%).

Being in a calm and peaceful atmosphere (45%). There are clear reasons why supporting people at their end of life is a high priority for Cardiff & Vale UHB

It is estimated that 75%3 of people dying have some form of palliative care need. This would mean that of the 32,000 people who die in Wales each year, about 24,000 will have palliative care needs.

Of these over 8,000 are recorded on a GP palliative care register and will be in receipt of either supportive or palliative care.

During 2014-15, across Wales 9,480 patients received specialist palliative care. Just over 5,800 patients were referred to specialist care within 90 days of their death.

In 2014, 78% of people who died from cancer received specialist palliative care compared with 13.8% of those who died from another illness.

Over the years the number of patients with non malignant disease has increased significantly to 24% of all palliative care referrals. The largest diagnostic groups include chronic obstructive pulmonary disease, Alzheimer’s disease and dementia, heart failure and frailty.

We are working closely with the Heart Failure team who are developing an extended community based service for patients to ensure appropriate palliative care support

GTHC provide a breathlessness management programme to patients overseen by the physiotherapist.

There is a slight increase in the recording of patients on the palliative care register during 2014. The Macmillan GPs are working to increase this number through the use of education sessions and support.

The recently established multi disciplinary MND clinic receives regular Consultant palliative care support and review of patients.

2 A time and a place, Demos and Sue Ryder 2013, http://www.sueryder.org/~/media/Files/About-us/A-

Time-and-a-Place-Sue-Ryder.ashx 3 How many people need palliative care: http://pmj.sagepub.com/content/28/1/49


Page 5 of 25

5. ORGANISATIONAL PROFILE Organisational Overview Cardiff and Vale UHB is an integrated organisation providing primary, secondary and tertiary care services employing over 14,000 staff. There are two acute district hospitals, the University Hospital of Wales (UHW) and the University Hospital of Llandough (UHL). In addition, there are four hospitals providing medical and mental health inpatient beds. The UHW is the third largest University hospital in the UK. The UHB acts as a tertiary unit from around Wales for many cancer site specific diseases; this increases the flow of cancer patients through the organisation in addition to the local community. The UHB has a Teenage Cancer Unit and hosts the Children’s Hospital for Wales. The specialist palliative care services are comprised of a consultant led hospital team which covers all the hospital sites, in addition there is a separate consultant led team for paediatrics. The community service is comprised of two separately commissioned consultant led specialist palliative care services. Marie Curie Cancer Care provide a 30 bedded inpatient Hospice based in Penarth and in addition provide a community service to the Vale and to Cardiff south. The hospice receives patients into the inpatient beds from all areas of Cardiff and the Vale. Marie Curie also provides a day therapy service to the Vale and its Cardiff south patients. George Thomas Hospice Care provide a community service to the north and central Cardiff zones; they do not provide inpatient beds but they do provide a day centre for access by their community patients. The Clinical Nurse Specialists provide a seven day face to face service for hospital and community patients, supporting the generic teams at weekends and bank holidays for new urgent referrals, for patients who are at the end of life or for patients who develop uncontrolled symptom problems, such as intractable pain. The Medical Consultants provide a 24 hour on-call service to support generic teams and hospices across South East Wales. Generic palliative care is provided by multidisciplinary teams across all care settings. End of life care at home is managed by GPs and out of hours primary care, nursing care is provided by a 24 hour district nursing service supported sometimes by care agencies. Night care is contracted and provided by Marie Curie Health Care Support Workers. The annual numbers of patients referred to the whole specialist palliative care service within Cardiff and Vale has been difficult to capture as many of the patients will be referred as ‘new patient referrals’ to at least two services; with many of the patients actually rotating between hospital, community and hospital depending on their needs. The caseloads are predominately cancer patients but there is evidence of increasing numbers of non-cancer referrals to the services.


Page 6 of 25

Overview of Local Health Need and Palliative Challenges

1. Timely access to District Nursing for end of life care provision due to the high demands on their service

2. Review of the newly implemented hospice at home service end of life care at home

3. Working closely with generic leads through the Delivery Group to improve end of life care

4. Further review and ensure robust governance arrangements 5. Reviewing the CVUHB Specialist Palliative Care Services and third sector

provision going forward, to ensure they can respond to changing demands and the actions from the Delivery Plan

6. Strengthening links with the third sector teams and the statutory teams 7. Further develop links with all third sector providers to maximise resources 8. Rotating staff to develop and maintain core skills 9. Improve feedback on end of life care from families in all settings 10. Driving up standards of end of life care through education 11. Improve communication between providers

6. Development of (Cardiff & Vale Health Board) Local Delivery Plan for

End of Life Care In response to the “Together for Health – End of Life Delivery Plan” (2013), Health Boards are required, together with their partners, to produce and publish a detailed local service delivery plan to identify, monitor and evaluate action needed within timescales. The HB Executive Leads for End of Life Care will need to report progress formally to their Boards against milestones in these delivery plans and publish these reports on their websites annually. Following our assessment of progress against priorities we have reviewed how service provision may need to change, we have drawn up actions to be undertaken during the period of the national delivery plan and in particular actions and outcomes we want to see happen this year. In addition to this, the palliative care lead clinicians have been tasked with assessing what we are currently doing, to look at what we can do differently or collectively and to set priorities for next year within this Plan 7 OUR PRIORITIES FOR THE COMING YEAR This delivery plan includes actions against each of the 2016 milestones within “Together for Health – End of Life Delivery Plan” (2013). The latest all-Wales End of Life Annual Report showed a number of areas of good practice. However a number of areas where further progress is required or where new issues need to be addressed:

More consistent early identification of patients who are probably in their last year of life, and who may require palliative care support.

Ensuring that systems are in place to allow more people to receive care and die in the place of their choice.


Page 7 of 25

Ensuring that there are sufficient nursing and care home places available to meet the future needs for end of life care for an aging population.

Reducing unnecessary emergency and hospital admissions for those at the end of their lives through effective advanced care planning

Ensuring that people are better prepared for their deaths To support this, the End of Life Implementation Group has set a number of national priorities for this year. These are:

Repatriation of hospice funding to LHBs

Encouraging more open conversations and focussing on improving communication skills

Improved identification in general practice of patients in last 12 months of life Cardiff & Vale University Health Board will support the implementation of these priorities by:

We are reviewing the referral process into our services to make this more explicit for referrers

We will maximise our resources to ensure co-production with all providers to achieve more effective patient care

Improving medicines management for palliative care to ensure symptoms are effectively managed in a timely fashion in their preferred place of care

Implementation of the new Care Decisions tool throughout the organisation and Care Homes to help ensure end of life care is well planned with full discussion with the patient and those important to them

Community and hospital specialist palliative care teams will lead on existing educational programmes which aim to encourage improved communication by clinicians with patients and families regarding their wishes at the end of life

To show sustained improvement seen in 2014-15 of the number of patients included on the GP register and GP practices who carry out regular MDT case review of this patient group

In addition to these national priorities Cardiff & Vale Health Board highlights the following priorities for 2016 which reflect the needs of the local population. Supporting living and dying well The priorities for 2016 are:

Further roll out the palliative care module into Nursing/Care Homes across the whole of Cardiff and Vale

Further embed the Macmillan GP facilitator role

Promote the use of the Advanced Care Planning tools and work with care homes and GPs to embed this in practice

Implement the new All Wales Care Decisions for the last days of life


Page 8 of 25

Detecting and identifying patients early The priorities for 2016 are:

Improve the use of primary care registers

Improve the referral process into specialist palliative care

Embed the role of the GP facilitator in supporting end of life care in primary care

Support the Care Home staff to complete the palliative care module and translate to practice

Monitor the non-cancer patients referral rates and continue to work collaboratively with other specialist teams to improve patient care

Develop single core assessment for Specialist Palliative Care for all providers Delivering fast, effective care The priorities for 2016 are:

Implement the bespoke HCSW service for palliative care patients who are assessed as meeting fast track Continuing Health Care

Review and be assured the delivery of palliative care aligns with and can respond to the Delivery plan aspirations

Review our governance and reporting mechanisms

Review our models of specialist palliative care provision across the area

Review our procedures and policies for medicines management across the area in respect of palliative care

Reducing the distress of terminal illness for patients and their families The priorities for 2016 are:

Monitor our ability to achieve ‘preferred place of care’

Monitor effective use of hospice beds

Improve our end of life hospital to home transfer times

Monitor our new referrals and follow up response rates for all services

Implement the new Care Decisions tool for end of life care across the area Improving Information The priorities for 2016 are:

Improve links to OOHs GP systems

Maximising use of CANISC outcomes for dashboard audit and monitoring of all UHB and third sector specialist palliative care outcomes

Improve feedback to clinical areas from palliative care reference group

Review of information challenges with provider leads Targeting Research The priorities for 2016 are:

Develop sustainable access to research for palliative care patients across all care settings. Exemplar study is set up: Optcare Neuro which will recruit from Cardiff and Vale and community settings, utilising George Thomas Hospice


Page 9 of 25

Care and Marie Curie Cancer Care community teams. A key priority is successful recruitment to this study.

Mitigating against risk of access to NISCHR research nurse support during NISCHR restructuring to Health & Care Research Wales. Palliative patients have complex needs and represent a vulnerable research population. Excellent working relationships have been developed with a dedicated palliative care research nurse resource, loss of which would jeopardise the Research Plan.

8. PERFORMANCE MEASURES / MANAGEMENT The “Together for Health – End of Life Delivery Plan” (2013) contained an outline description of the national metrics that LHBs and other organisations will publish:

Outcome indicators which will demonstrate success in delivering positive changes in outcome for the population of Wales.

National performance measures which will quantify an organisation’s progress with implementing key areas of the delivery plan.

Progress against these NHS outcomes and assurance measures will form the basis of each health board’s annual report on neurological services. Our latest annual report highlights our progress against these measures. Our next annual report will be published in July 2016.


Page 10 of 25

ACTION PLAN 2016

Supporting living and dying well

Priority Actions to date Actions required 2016 Expected outcome Lead Timescale

Support training for primary care teams to encourage patients to have in place plans for end of life care

Leads are identified in each locality for Advance Care Planning for Care Home staff. GPs have been offered the tools and some training to undertake Advance Care Planning with Nursing Home residents. Two Macmillan GP facilitator posts have been supporting with this work. The Macmillan GP Steering Group is monitoring progress on specific training on ACP work as part of GP protected learning time and education related to end of life care. In paediatrics there has been good progress with the development and implementation of the All Wales Paediatric Emergency Care Planning document.

Further expand the education and implementation of the use of ACPs in all care homes ECP to obtain governance approval from C&V UHB after which approval will be sought from all Welsh Health Boards

Increased numbers of ACPs Should be ratified after which the launch and implementation can begin

Macmillan GP Facilitators Dr Richard Hain

Review Progress –continual improvements July 2016 Jan 2017

Deliver training for GPs and primary care professionals to provide care in the community

Uptake on all education programmes is monitored. The appointment of the GP Facilitators will see the development of some bespoke programmes for GPs in Cardiff

The education of GPs and primary care professionals will continue to be monitored through PCIC. Community

Improved care for patients as evidenced by increased education to staff and less concerns around

EOL Delivery Group Third sector community palliative care

Sept 2016


Page 11 of 25

and Vale. Cardiff University has now revalidated the End of Life/Palliative Care Module for nursing and now for allied professions. 300 qualified nurses (180 District Nurses) have completed the module. All C&V and Vale of Glamorgan Nursing Home Matrons will have completed the module in 2016

palliative care, Macmillan GP facilitators and Cardiff University will be providing some of the specialist education. The additional need for education in Care Homes has been recognised by the End of life Board and additional non recurring funding to support that has been identified. The best way to utilise this is being reviewed through the Delivery Group.

EOL care organisations and Macmillan GP Facilitators

March 2016

Improve communication skills of health professionals and social care teams to talk to patients regarding end of life plans

This is an on-going part of the education programme and is part of both the GP short course and the EOL/Palliative Care Module which can be accessed by all nursing and allied professionals. Continued Palliative Care education of hospital professionals though regular input to under-grad and post-graduate courses

Further support is necessary from Clinical Boards to ensure that 10% of their qualified nurses have completed the EOL module. As a result of the new C21 Curriculum all 3rd medical student will now spend one week with Specialist palliative

Better trained workforce as measured by less concerns and positive feedback

Mel Lewis Dr Mel Jefferson

Review Sept 2016 Sept 2016


Page 12 of 25

Initial links to local authority teams have been made to establish opportunities to improve access to established communication courses for staff.

care in all settings resulting in greater understanding at an earlier stage n their training than previously We need further exploration of the role of the third sector in supporting this programme of work

Delivery Group Delivery Group

Review Sept 2016 Review Sept 2016

Specific focus on paediatrics to ensure engagement at the right time with families

There is an ongoing programme of workshops in place with paediatric clinicians

According to national educational plan

Dr Richard Hain Dr Jo Griffiths

Sept 2016

Put in place lead pharmacists in the UHB to support improvement of medicine management at the end of life

There is an identified lead pharmacist in Cardiff and Vale UHB who supports CVUHB Palliative Care Delivery Group In addition, the lead pharmacist in UHW, UHL and Marie Curie are meeting regularly to improve the delivery and development of services between all providers. A Task & Finish Group is reviewing the management of medicines in palliative care across the area; this will include, for example, the use of opioids,

Need to review outcomes from Medicines Task And Finish Group Further develop support for the single handed pharmacist in the Marie Curie Hospice

Less concerns and improved processes re medicines management in EOL care Joint working and sharing of expertise within pharmacy services between Marie Curie and CVUHB

Delivery Group Daryl Baker

July 2016


Page 13 of 25

the role of prescribers and agreement about anticipatory prescribing.

Detecting and identifying patients early

Priority Actions to date Actions required 2016

Expected outcome Lead Timescale

Work with GP practices to encourage the use of Palliative Care Registers, including children, with less than one year life expectancy including those with non-cancer diagnosis.

All GP practices in Cardiff and Vale have Palliative Care Registers, the use of the registers and the conduct of MDTs is being monitored.

In 2014-15 we saw an increased use of the palliative care register and its effect on patient care and we intend to further enhance this. It is envisaged that the GP facilitators will be further supporting this process

Improved numbers of patients registered

PCIC Clinical Board Director & GP Facilitators

Review continual improvements Sept 2016

Promote the benefit of regular multi-disciplinary team meetings to discuss patients on the Palliative Care register.

All CVUHB SPC teams are holding MDT meetings at least three monthly to discuss caseloads. This is being monitored through Primary Care Performance data and EOL Audit

Greater co-production between SPC and primary care teams to strengthen this process

All GP practices will hold at least three monthly MDTs

PCIC Clinical Board Director

Review Continual improvements 2016

Encourage professionals to improve their communication and clinical skills to recognise patients entering the palliative

Hospital and inpatient hospice wards are being encouraged and supported to aim for 10% of their nursing workforce to have completed the EOL/Palliative Care Module. This is regularly being monitored

Greater focus on clinical areas where there is less uptake of the module

More staff educated in EOL care

Delivery Group

Sept 2016


Page 14 of 25

phase of illness. and many areas have already exceeded the 10% target. There are some areas where there has been less uptake – some of these are the core medical ward areas. Ongoing education to all staff as outlined above The launch of the new Care Decisions tool we would anticipate that a greater focus on communication and clinical skills will result and be central to its implementation

An implementation programme has been developed with a CNS leading on the project throughout the organisation

Full implementation by March 2016

Mel Lewis

March 2016

Provide information so generalist teams know how to access support from specialist palliative care

Information has been disseminated via the UHB intranet and newsletters. Further work is on-going to provide easier and explicit links to all the specialist palliative care services Task and Finish Group already working on improving referrals pathway

Update of hospital palliative care intranet pages and link to the internet via the Cancer services website Third sector providers reviewing their websites in light of the outcomes from Improving. Referrals Pathway Task & Finish Group

Better access for information for staff patients and families

Delivery Group Delivery group

July 2016 July 2016


Page 15 of 25

Delivering fast, effective care Priority Actions to date Actions required

2016 Expected outcome Lead Timescale

Plan and deliver high quality evidence based end of life care services through well organised MDTs in line with national guidelines such as The Welsh Markers for End of Life Care.

All specialist palliative care teams have weekly multi-professional MDT meetings, There is a UHB palliative care audit dashboard for all specialist providers with performance monitoring. This will help identify the demands on services and the prudent use of resources.

Further work is needed around joint data collection for SPC services to ensure services are providing quality equitable services

Collection of joint qualitative and quantitative data to guide service delivery and improvements

Delivery Group July 2016

Ensure effective sharing of information between services.

Third sector providers now have access to the C & V clinical portal and monitoring of the use of CANISC is taking place through the palliative care dashboard. Further work is being undertaken (Task & Finish Group) between the services to assist in improving information sharing.

Review outcomes of the Information sharing Task and Finish Group

Collection of joint qualitative and quantitative data to guide service delivery and improvements

Delivery Group Task and Finish Group lead Dr Anthony Byrne

July 2016

All NHS and Third Sector provider

Joint audits across providers are identified in the clinical

Further identification of joint audit projects

Improvements in standards of care across

Dr Mel Jefferson Continual improvements


Page 16 of 25

organisations providing end of life care must participate in relevant audits.

reference group Third sector services carry out annual patient/family satisfaction audits. All services are contributing to the iwantgreatcare Welsh questionnaire.

will be identified from the Task & Finish Groups Further work is needed to improve the number of returns on the iwantgreatcare questionnaire

settings 2016

Work through the Palliative Care Implementation Board to plan strategically specialist facilities and community hospital at home style provision.

Further work is being undertaken between the Specialist Services and the UHB through the Shaping Our Future Wellbeing Strategy to take a more strategic approach to the planning and prudent use of our services including the new health and wellbeing centres Progress and outcomes will be available early 2016. Collaborative Task & Finish Group has been developed to maximise palliative care resources

To ensure the palliative care priorities are linked to the Strategy and to the organisational aims The Palliative Care Delivery Group will review the outcomes of the provider task and finish groups and feedback to the provider leads

Better co-ordinated services

Delivery Group

July 2016 March 2016


Page 17 of 25

The delivery board has previously identified the need for a dedicated hospice at home service to support district nurse core provision of care

This service has now been developed through the Marie Curie contract and will commence in Jan 2016

Improved collaborative care between services Flexible service with reduced admissions and improved discharges with more people achieving their preferred place of care

Jan 2016

Collaborate with the Palliative Care Implementation Board and WG to address capital investment needs such as redesign of specialist units.

The CVUHB Palliative Care Delivery Group will lead on the wider vision and strategy for End of Life Care & Palliative Care provision working closely with the third sector

Respond to changes that affect the population as a result of the Transforming Cancer Services in South East Wales Review. Review of future hospice provision should be considered depending on these outcomes and the wider population expectations

Fiona Jenkins Sept 2016

Establish mechanisms to gather and act upon feedback from

Iwantgreatcare is used across all the Specialist palliative care services Outcomes are reviewed as

Continue to encourage use and evaluate performance

Continual improvements in 2016


Page 18 of 25

individuals and families.

part of the performance monitoring and sharing the outcomes from this through the Palliative Care Reference Group

Reducing the distress of terminal illness for patients and their families Priority Actions to date Actions required


Plan, secure and deliver well co-ordinated palliative and end of life care on a 24 hour basis

Seven day services are in place throughout the CVUHB area. Further work is being undertaken as Task & Finish Groups to maximise the use of resources across the area, including reviewing of models of care/assessment, spread of resources, medicines management and information sharing Development and commissioning of a new HCSW service to deliver core care to patients at home, supporting district nurses to provide end of life care

Review all outcomes from SPC Task & Finish Groups in 2016 Monitoring and evaluation of the new service to ensure it meets patient needs

Improvements in the number of patients being supported to remain at home a t the end of life

Delivery Group Kay Jeynes

March 2016 Jan 2016


Page 19 of 25

Support all providers to participate in the All Wales audit of the Integrated Care Priorities.

The new All Wales Care Decisions Tool for the End of life has been released in Nov 2015. This will enable and encourage direct communication between clinicians and families regarding the management of care in the last days of life. A programme of work has been established with all specialist providers to implement the change throughout the organisation by end of March 2016

Monitor progress through the Steering Group and feedback to the national audit

Improvements in comfort, dignity and patient and family communication around end of life care

Mel Lewis April 2016

Clear funding streams for specialist palliative care services.

Specialist Palliative Care and the third sector contracts are managed through one Clinical Board. Escalation procedures for reporting any concern are in place through the Clinical Board and Executive Director of Therapies and Health Sciences.

Review of Service level Agreements in 2016 with the third sector providers

Kay Jeynes April 2016

Support participation in regular surveys of the experience of

We have the national iwantgreatcare survey and in addition each provider has

Improvements have been made in numbers of survey

Dr Marged Capel GTHC Dr Jo Hayes,

Review Sept 2106


Page 20 of 25

palliative care patients and their families.

their own patient experience audits which are carried out regularly

returns. We need to continue to respond to the survey outcomes

MCCC Dr Melanie Jefferson, C&V

Ensure transition arrangements from child to adult palliative care services are in place

Some transition arrangements are in place but this does require further work. A transition group has been established by the Children and Women’s Clinical Board with a particular focus on this group of children. A post for transitional care for patients across Wales is due to be advertised

Appointment of consultant to establish and further develop the existing MDT team

Improved services for children who are transitioning into adult services

Dr Richard Hain July 2016

Put in place 24 hours paediatric palliative care advice rota

A rota has been developed which only has 2 Consultants on it and it is anticipated that the new consultant for transition and local paediatric palliative medicine leads will be join in due course

A sustainable medical OOHs advice rota will be established

Improved OOHs support and advice for clinical staff caring for paediatric palliative car patients

Dr Richard Hain Sept 2016

Create a patient and families reference group to support the work of the delivery board

A group has been established through the hospice and the agenda of this group will be built on to widen its focus and facilitate engagement with the delivery board

To establish this across all care setting in CVUHB

To improve engagement Dr Jo Hayes July 2017

Ensure CaNISC is accessible and links

CaNISC is available to all specialist palliative care

Task and Finish Group to report back

Dr Anthony Byrne March 2016


Page 21 of 25

with other relevant IT systems

clinicians; access for the Emergency Unit is currently being worked on. This has been taken forward by the acute oncology service

to the Delivery Group

Improving information

Priority Actions to date Actions required 2016

Expected outcome Lead Timescale

Regularly review information available to ensure it is targeted to meet the needs of patients and their families.

Macmillan Cancer Information Service is well developed in University Hospital of Wales and has been rolled out to University Hospital Llandough and Barry Hospital

Link to patient experience in order to further expand services

To maximise patient and family information

Patient experience Sept 2016

Ensure the best possible IT and communication links to give clinical staff fast, safe and secure access to information needed.

CVUHB has improved availability of information by providing access to Clinical Portal across the primary care and third sector palliative care services.

Further evaluation of this service will take place though the provider reviews

To maximise patient care through information exchange

Kay Jeynes July 2016

Publish transparent information on the performance of NHS and voluntary sector providers

The CVUHB Annual Report sets out information on services, together with Annual reports and Peer Reviews from Third sector providers

To produce annual report which will be available on the internet regarding our services and progress

To provide information about progress, challenges, integration work and developments

Fiona Jenkins Sept 2016


Page 22 of 25

Record and use clinical information for all palliative care patients using CaNISC

This is in place for all specialist Palliative Care and Cancer services with all new patients and re-referrals recorded

To monitor the quality and governance

Dr Melanie Jefferson

Sept 2016

Report performance against specific end of life quality indicators to the Implementation Board annually

The Annual Report addressed this objective.

To produce annual report which will be available on internet

To provide information about performance, progress, challenges, integration work and developments

Dr Melanie Jefferson

Sept 2016

Publish regular and easy to understand information about the effectiveness of palliative care services

A collaborative review of specialist services has taken place in 2015 and the outcomes of the effectiveness of the services have been distributed This information will be more widely available once the whole work plan has been completed by the Delivery Group early 2016 All Wales data and benchmarking of services has been made available as part of the All Wales Annual Report on Palliative Care

Review outcomes of work streams and produce strategy for CVUHB and public information regarding the services

Transparent information about the services will be available

Delivery Group July 2016


Page 23 of 25

Targeting research Priority Actions to date Actions required


Foster a strong culture of research

The Optcare Neuro Study is now open to recruitment. It is an HTA funded study and C&V is one of five UK centres. It represents unique research collaboration with patients being recruited via C&V clinics and the intervention undertaken by both community palliative care teams. Assessment is made by the HCRW research nurse. The study has allowed development of understanding of the research process amongst community teams and fostered increasingly strong relationships between those teams and the research workforce and C&V R&D department. The latter developed a study specific agreement with the hospices which can act as a template for future collaborations.

Complete recruitment of patients and submission of data to research centre

A clearer understanding of the needs of this patient group

Dr Anthony Byrne Jan 2017


Page 24 of 25

Work closely with the National Institute for Social Care and Health Research (NISCHR)

NISCHR has now been re-branded as Health and Care Research Wales. There is an excellent relationship between palliative care services and the HCRW workforce with 4 studies currently open to recruitment across Cardiff

Increased participation in clinical trials


Work in partnership with cancer research organisations throughout Wales.

Palliative Care is a core workstream in the newly established Wales Cancer Research Centre and Cardiff has a strong leadership role within the Centre with representation at Executive Board level and as leader of the supportive and palliative care workstream.



Offer all appropriate patients access to a relevant clinical trial.

The portfolio of research and clinical trials in C & V is active and recruitment is monitored.


Dr Anthony Byrne Sept 2016

cardiff & vale university health board end of life ... · end of life delivery plan – cvuhb...

Documents