Palliative Care Wales
Feedback from Greynog 2014

Gregynog 2014


The All-Wales Palliative Care Research Conference has been held each year at Gregynog since 2001. This conference provides an opportunity to showcase the breadth of work being undertaken in Wales. This enables us to develop a culture of innovation and dissemination of good clinical practice in Wales.


The 2014 conference had speakers from North and South Wales, as well as several from England, with a broad range of experience from medical students to research colleagues and nursing staff to senior palliative care consultants – opportunities for seasoned presenters and for those new to presenting.


There were also poster presentations illustrating the depth and breadth of the work being carried out in Wales.


The winner of the poster competition was Dr Clifford Jones from Aneurin Bevan Health Board, “Developing Advance Care Planning in Nursing Homes and the Community Setting.” An evaluative study of setting up training in advance care planning in nursing homes and community settings, up-skilling the nursing workforce (district nurses and nursing home staff) with supporting documentation and resources and evaluating uptake.



Feedback was consistently positive and constructive. In summary:

  • 97% rated the relevance of this meeting to their educational needs as highly or mostly relevant.
  • 97% rated the overall quality of the education offered by this meeting as good to excellent.
  • 97% classed the effectiveness of the conference for CPD purposes as very effective or definitely effective.



Overviews of the presentations are below.


The 15th All Wales Annual Palliative Care Conference will be on 8th & 9th October 2015. The deadline for abstract submissions is 31st July 2014. Further details, and a brochure, can be obtained by e-mailing the conference organiser -




Presentation Title




Next steps


Hyoscine Hydrobromide or Glycopyronium for Rattle: Should we continue to use it?

(Dr Marlise Poolman)


To consider, and generate discussion, regarding the role of these medications.


Literature review of the evidence underpinning practice.

Notably, “the current literature does not support the standard use of antimuscarinic drugs in the treatment of death rattle”. (JPSM 2014, systematic review)


Challenge to adapt practice to reflect evidence.

Develop into a research proposal.

Questionnaire evaluation from Gregynog handout.




The Cardiff University GP Short Course in Palliative Medicine

 (Dr Jo Hayes)

A reflection on this course and consideration of its future.




History of the evolution of the course.

Review of the numbers and locations of courses delivered.

Value to participants.


No similar courses in England – a marketing opportunity?

Adapting model for use in secondary care, out-of-hours services or other professional groups.



“I think XXX is going to finish me – I’ve been moved to coming every 2 weeks”

 (Dr Fiona Rawlinson)

A point survey looking at interactions for a hospice day care setting.


Of the last 10 possible attendances:

- 9 of 35 patients achieved 100% attendance,

- 20 of 35 achieved 70% or more attendance.

Social interaction, medication advice and physiotherapy input were the most observed interactions.


New referral forms (pilot) assessing symptoms at first assessment.

Qualitative review of service users.

Prospective data collection, ongoing.



The PELICAN Study: Patient experience of living with cancer associated thrombosis

 (Hayley Prout)


To evaluate the experiences of patients with cancer associated thrombosis, to have an understanding of its impact and to find ways to improve their quality of life.


Patients experienced symptoms related to their thrombosis rather than to those connected with cancer.

Delay in presentation due to patients’ lack of knowledge

Delay in diagnosis due to health professionals not recognising symptoms.

Patients not being told about the risk of thrombosis (most common oncological complication).


Increase awareness of cancer associated thrombosis (and specialist clinics in several areas of South Wales).

Further research planned into cancer associated thrombosis.




Predictors of End-Stage Neurodegenerative Conditions; Outcomes of two specialist palliative care services

(Shivali Fulchand)

Primarily, to establish the prevalence and frequency of triggers identified by the NEoLCP.

Also, to determine the number of admissions (hospital and hospice) in the last year of life for these patients.


The time from SPCT referral to death: the mean was 5.7 months and median 2.5 months.

A marked rise in ‘trigger symptoms’ in the last month of life were identified. Typically identified as ‘significant complex symptoms’.


This is part of a wider UK study, which is ongoing.

Increase awareness of potential cost savings as timely input may prevent the need for unscheduled care.





Investigating the Provision of end of life care for end stage alcoholic liver disease patients in Swansea hospitals

 (Dr Gillian Warwick)

This audit was a retrospective case note analysis of patients admitted with ALD. Standards were drawn from the NICE Quality Standards for End of Life Care for Adults.

Low awareness of SPCT of those dying with ALD. Felt that this reflects poor recognition of dying patients at the ward level and challenges around capacity and communication.

Reinforce, and support, need for recognition of dying patients.

Development of an information leaflet to support staff, patients and families about the end stages of liver disease.


Giving Birth to Guidance

 (Ros Johnstone)

Description of the evolution of the Integrated Care Priorities following the Neuberger review on the Liverpool Care Pathway.


“Inevitability of change”.

From an audit in January 2014 the quality of care in the last days of life provided in different care settings across Wales was rated highly, whether or not the ICP was used.


Development of new guidance; currently out for comments.




What uses does the integrated palliative care outcome scale (IPOS) have: The experience of a SPCT in a Tertiary Cancer Centre

(Dr Gareth Watts)


This tool, undergoing formal validation studies, was trialled for inpatient referrals at Velindre Cancer Centre.




1.      Tool fitted into routine assessments.

2.      Focused concerns and facilitated communication.

3.      Aided service evaluation managerially.



1.      Unvalidated tool.

2.      Paper heavy.

3.      Need for clerical support and data entry.


IPOS is growing in popularity (but so have many tools in the past) - there is a need to be clear what question the tool is seeking to answer.


Wider discussion is needed about appropriate outcome scales in Wales. Validation studies anticipated to complete in December 2014.




A case of missed Paracetamol overdose in a patient with metastatic breast cancer

(Dr Charlotte Milne)


A case presentation to highlight the issue of (unintended) staggered Paracetamol overdose.


Limited records of this presentation.

Mortality is 37% (higher than that for impulsive / one off Paracetamol overdose)


N-acetyl cysteine should be given irrespective of Paracetamol level in circumstances where the overdose is staggered or there is doubt over the time of ingestion.


Sexual health and wellbeing in Cancer and Palliative Care

(Dr Aoife Gleeson)


This multidisciplinary group sought to identify the needs and improve sexual health literacy in ABUHB.



Sexual health was not routinely assessed for most patients by SPCT, primary care or district nursing teams.

There was minimal use of models to assess sexual issues.


Review of available training.

A draft ‘sexual health pathway’ is in development.

Develop and roll out training

(E.g. PLISSIT model)



Medication for the Last Days of Life: Choice or Conundrum?

(Dr Helen Mitchell)


A review and discussion of the contents of the just in case boxes.


Cost was not seen to be a primary influence.

There was further discussion about the evidence base for some medications, namely those for ‘rattle’.

Ongoing concerns, from community settings, about arranging prescription for drug administration when needed.


To consider including medications that the family can administer (e.g. sublingual Lorazepam).



Metastatic Spinal Cord Compression (MSCC) awareness cards (Empowering patients). An audit of their use

(Dr Nikki Pease)


This audit, with completion of the audit loop, looked at the use of MSCC awareness cards.

The local trust policy was for all patients with spinal metastases to be aware of this potential complication and have a card.


Initial audit had ‘patchy’ usage of the cards. (Nov 2013)

This precipitated a quality improvement programme.

At re-audit (April 2014) nearly half of appropriate patients were given an awareness card.


Promotion of routine documenting that card has been given in the ‘Alerts’ section within Canisc.

Local process developed so any radiology report with spinal metastases identified is highlighted to the SPCT so that an awareness card can be given to the patient (by the most appropriate professional).


What makes a good patient representative?

(Mrs Betty Foster)


A reflection on being a patient representative.


This highlighted the value of engaging the patient representative and maximising their contribution. Simple aspects included introductions to the clinical team and breaking down technical terms.


Not applicable.



Improving the experiences of palliative care patients out of hours (OOH): A Quality Improvement Approach

(Dr Siwan Seaman)


Following anecdotal reports this project sought to improve access to specialist palliative care advice for palliative care patients in the community in Cardiff and the Vale.



Several barriers were identified, including: GP awareness of the specialist palliative care advice line and that only a small proportion of patients known to specialist palliative care have ‘special notes’ on the OOH computer system.


Specialist palliative care team able to e-mail updates to the out of hours hub.

Development of CPD sessions and information packs for the out of hours teams.

Promotion of e-learning module ( on quality improvement projects.



MSCC in North Wales: survey of clinicians knowledge and audit of time to radiological diagnosis

(Dr Lauren Price)


The aims were to assess frontline clinicians’ understanding of the clinical presentation and the initial management of MSCC.


More than half of responders were not confident of their ability to identify potential MSCC.

Only 50% knew that MRI was the appropriate investigation.

None of the responders had had formal teaching on this topic in the last 5 years.


Education to improve knowledge around the presentation and management of MSCC.




Verification of Expected Death (VOED) by senior Hospice at Home nursing assistants

(Sophie Thomas)

The aim was to improve the after death service provided to service users. The presentation went on to reflect on some of the challenges that arose.



Review of the law (2003) recommended that more staff be trained in the verification of death. The local coroner did not have any concern with nursing assistants being trained for this role.

Concerns raised by community nursing teams about this, so (currently) VOED by nursing assistants has been temporarily stopped.


The way forward:

In discussion with Hospice UK (although some confusion between verification and certification has arisen).

Suggestion was to liaise with teams in other rural areas (i.e. Scotland) as to how they manage the verification of expected deaths.



ACP Education: Understanding what we do not know…

(Dr Marlise Poolman)


This reviewed the experience of an advanced care planning study day (including input from a lawyer).

This was a valuable investment in terms of time; not only raising the profile of this issue but also in recognising the need to be clear about what we are defining within “ACP”.

Following the study day participants were prompted to develop ways to put theory into practice within their clinical settings.

Further education sessions have been arranged and incorporated as part of the professional development program for all SPCT members.



Advance Care Planning: A Pilot Study of Implementation by Nursing Home Matrons

(Dr Rachel Lee)


A pilot project in 5 nursing homes seeking to increase the number of ACPs. It also sought to empower senior staff; who are having these conversations now.

Less take up than was anticipated. Degree of dependence on the willingness of the primary care team.


9 ACPS were completed within the pilot project. It was felt that 7 hospital admissions were prevented as a result of this


Team looking into ACP documentation when individuals do not have capacity.

More training for care homes, including with HCAs.

2 Macmillan ACP CNS have recently been appointed.


Family caregiver perceptions surrounding place of care for their relatives at the end of life: A Qualitative Systematic Review and Thematic Synthesis

(Caroline Woodman)


A qualitative systematic review exploring the opinions of family caregivers towards place of care for their relatives at the end of life and a thematic synthesis.

18 articles identified including more than 500 patients.

2 main themes identified:

1.      Preferences and perspectives

2.      Impact of caring (positive and negative aspects)

Healthcare professionals need to facilitate open discussions surrounding the feasibility of caring for a loved one at home, including patients’ and family caregivers’ preferences.



Carer’s and Healthcare Professional’s (HCP’s) Views on caring for dying patients in their own homes in North Wales

(Jackie Pottle)


A qualitative study looking into the experience of relatives and healthcare professionals in supporting patients die in their own homes.

Support that helped:

•         Respect for patient’s choice and control

•         A supportive team of extensive family prepared to actively care

•         A range of professionals involved in care and

•         Communication, co-ordination and consistency, including provision of adaptive equipment in a timely manner.

Support that did not help:

•         Poor communication and poor continuity.

Advocate for key workers to be appointed.

Promote active involvement of carers in developing care plans.



Development and Audit of a monthly Complex Pain MDT

(Dr Gareth Watts)


To identify earlier patients who might benefit from interventional analgesia, with more timely referrals.

In the audit, by case note review, 1 in 5 patients could have been discussed in the complex pain MDT, with input from a wider group, but were not.

On discussion: the MDT focused on physical pain rather than other elements of ‘total pain’.

Increased use of pain services, from acupuncture to cordotomy


Referral criteria to the MDT were amended following this audit.

Suggested that referrals come from other MDTs, rather than individuals, to raise its profile.

Developing links with chronic pain team (e.g. botox clinics)

Considering research potential as well as professional development opportunities.



It might be prison but it is my home

(Dawn Casey)


This project looked at palliative care in the hospital wing of a prison. It sought to educate and empower the healthcare team there.

Several cancer awareness days and training days were provided for all the staff and wardens on the wing.

Some systems needed to be adapted (e.g. supervision and support of staff supporting others through loss, dying and bereavement).


Developing a distance learning training tool.

Identify prison staff to undergo training and support to deliver these courses in the long run.

Rolling out the programme to other prisons.



Marie Curie Palliative Care Dementia Service

(Monika Borkowska)


A qualitative and quantitative analysis of a year of this service. This dementia service is intended to have a case management role.


Many patients had multiple co-morbidities and were referred with a prognosis of months.

(74% of patients referred died within 6 months)

Coordination of care was improved.

Increasing the confidence and skills of carers helped 87% of patients achieve their preferred place of death.


To share their knowledge and skills; especially through existing tools like the ABBEY pain scale.

To identify patients earlier in their diagnosis.