Contents

Introduction 3

Development of Research Infrastructure 4

Infrastructure Milestones 5

Patient, Family and Public Involvement in Developing Research Projects 6

LOROS Research Themes 6

Strong Collaborations 7

Initiated Approach to External Researchers 7

Approaches from External Researchers 8-10

Success in Applications for Funding of Research Studies 11

Funding Applications 11-13

More Staff who are Research Active 13

Staff Involvement in Research 14-15

Study Events about Evidence Based Practice & Research Skills 16-19

Increased Outputs Including Publications & Other Methods of Dissemination 20

Patient, Family and Public Involvement in Research 20

Dissemination of Research: Papers, Posters, Reports & Conference Presentations 21

Invited Oral Presentations 22

Impact of Research on Practice & Care 23

How our projects are changing what we do 23-29

Research Newsletter 29

Staff Views 29-31

Impact on Patient Care Beyond LOROS 31-32

A Specific National Profile in the Research & Palliative Care Communities 32

Appendices

Appendix 1: LOROS Patient/Carer Interviews 33-37

Appendix 2: Information Leaflet about Research for Patients & Families 38

Appendix 3: Journal Publication of Findings 39-43

Appendix 4: Conference Presence 44-45

Vs.1, November 2014

3

Introduction

In 2011 The Board of Trustees decided that research should form a larger part of the work

undertaken at LOROS and a three year strategy (2012-15), linked with education, was developed

to take this forward. The ambition of the education and research strategy is for LOROS to become

a centre of excellence for education, training and research in palliative, supportive and end of life

care. As such a centre of excellence LOROS needs its staff to deliver exemplary clinical services

with a high level of knowledge and expertise, be skilled in sharing that expertise, and also be

actively engaged in developing the evidence base that informs that expert practice. As we come

towards the end of the three years it is important to reflect on the impact this strategy and the

development of research has had.

The goal for research articulated in the strategy is that there will be a focussed programme of

research that builds on the unique contributions of LOROS services and skills of its staff and

contributes to the care of patients and their families and the development of practitioners. In this

report we consider how far we have moved towards this goal and what impact the strategy has

had on LOROS as an organisation, on our staff and on the care we provide. We also consider the

impacts beyond LOROS.

In our strategy we considered that success would look like:

A clear statement of intent around a small number of research themes

Strong collaborations with teams that have overlapping research themes but add different

knowledge, skills and perspectives

Success in applications for funding of research studies

More LOROS staff who are research active

Increased outputs including publications and other methods of dissemination

Integration of research findings into LOROS education and clinical services

A clear link between research and change in clinical practice

A specific national profile in the research and palliative care communities

4

Development of Research Infrastructure

To deliver the objectives’ required resources. In the 2011/12 financial year the LOROS Board of

Trustees agreed the first discrete research budget and the change in the job plan of Christina Faull

to lead the development of research (1 day a week).

A LOROS Research Committee was formed in early 2011 with the dual remits of development and

governance. The development of other key structures that support research at LOROS are

described in table 1.

Patient, Carer and Public Involvement (PPI) is a key aspect of development of the breadth of our

research activity. We have developed a range of ways of PPI engagement and the depth and

scope of this is growing. We have a patient and a carer as members of the CPEP Operational

Group; both of whom also actively support research at LOROS. All of the projects that we have

developed at LOROS have patients or carers involved in some way. For an individual project this

will involve some or all of: the development of the research questions; the design of the study; the

steering of the project through data collection, analysis; and dissemination of findings. This

involvement is shown in more detail in table 2. A research newsletter has focussed on the

experiences of two of those people who have been involved in this way and one reflecting

involvement as a research participant (appendix 1).

Most recently we have sought the views of the LOROS Patient and Carer Participation Group

(PCPG) on an information leaflet about research for patients and families. They were very

supportive and this is now in print and will be displayed at LOROS and on the website (appendix

2). In 2013 this Group discussed and gave guidance on the display of research posters at the

hospice.

5

Table 1: Infrastructure Milestones:

2012 2013 2014

March CPEP* launch at the House of

Commons – with Christina Faull as Co-Chair (alongside Prof. Jayne Brown)

May CPEP officially opened and

inaugural lecture Professor Mike Nolan

Professor Jayne Brown commences at DMU

September Idaliza Garner commenced

post as Research Support & Administrator

Research given its own phone line and email at the Hospice.

October First edition of Research

Newsletter Research posters from

conference events on display at the Hospice

November UHL RM&G support agreement

renewed CPEP 1

st annual lecture

Professor Jayne Seymour December Reda software licence

purchased to link LOROS with research database used by RM&G at UHL

April NVIVO research software

purchased May

Dr Zoebia Islam commenced as Senior Research Fellow

June Volunteer administrator, Kathy

Castleman, joined the research team.

October Staff survey on research

activity at LOROS Christina Faull invited to

Honorary Professorship at De Montfort University

January Desk space for associate

‘visiting’ researchers. March Research pages of the new

LOROS website ‘go live’. June Findings from the Oct’13

research survey shared with staff

August First meeting of the Research

Reference Group, formed in response to recommendations from the 2013 research questionnaire.

September Paige Murney joined the

Research Team for one day a week, supporting administration

October LOROS became a ‘site’ on the

NIHR Clinical Research Network portfolio (Site ID: N0019991)

*CPEP: the DMU-LOROS Centre for the Promotion of Excellence in Palliative Care

6

Table 2: Patient, Family and Public Involvement in Developing Research Projects

Study Consultation on Project

Development Project Steering Group

Improving Palliative Care for Tomorrow (ImPaCT)

1

Withdrawal of ventilation at the request of a patient with MND

1

VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care: Video analysis of patient doctor consultations

5 3

Knowledge Transfer Partnership Development of community pathway for chronic lymphoedema

4 2

Enabling preference, interdependence and choice for adults from South Asian communities at the end of life: The EPIC project

10 (1 as named collaborator) Study not open as yet

Developing a Palliative Care Self-Management Programme for patients with incurable or advanced cancer and their families: HELP (HOPE, Education, Learning, Positivity)

1 (co-applicant) Study not open

LOROS Research Themes

Following an expert advisor and researcher collaborator event in December 2011 the Research

Committee developed the focus for research at LOROS building on our clinical strengths,

understanding of patient and family needs, our interests and likely opportunities for funding and

collaboration. The themes are:

1. Innovation in Palliative Care

2. Diversity and Disadvantage

3. Education, Including Communication Skills

4. Lymphoedema

5. End of Life Decision Making and Advance Care Planning

7

Strong Collaborations

Collaborations may be initiated by LOROS or by researchers approaching us. Over the past 3 years the number of researchers approaching us has

increased and the diversity of projects and disciplines has broadened. Some of these approaches we have declined, some we have engaged with but

they have not, as yet, born fruit. Others have become established and have developed into productive areas of research. The key collaborations are

described in tables 3 & 4.

Table 3: LOROS Initiated Approach to External Researchers:

Proposal/Study Name

(who the collaboration is with) Organisations

Withdrawal of Ventilation at the request of a patient with Motor Neurone Disease (MND): A retrospective exploration of the experience of doctors, non-medical health professionals and close family.

Kay Phelps Emma Regen Dr David Oliver Dr Chris McDermott Karen Pearce

University of Leicester Wisdom Hospice, Rochester & University of Kent Sheffield Institute for Translational Neuroscience, University of Sheffield Motor Neurone Disease Association (MNDA)

Enabling preference, interdependence and choice for adults from South Asian communities at the end of life: The EPIC project

Professor Swaran Singh Professor Heather Wharrad Professor Jayne Brown Professor Mark Johnson Professor Joe Kai Professor Louise Wallace Dr Kristian Pollock Dr Irfana Musa Dr Yasmin Gunaratnam Mrs Gurpreet Grewal-Santini Louise Clayton Emma Wilkinson Karen Lord

University of Warwick University of Nottingham De Montfort University Coventry University University Hospitals of Leicester NHS Trust Goldsmiths College, London University of Bedfordshire

Transitions between Children’s Hospice and Adult Services: Sorted.

Dr Sat Jassal Prof Swaran Singh Dr Moli Paul Prof Panos Vostanis Prof. Doug Simkiss Prof Jayne Brown

Rainbows Children’s Hospice Warwick University University of Leicester De Montfort University

8

Table 4: Approaches from External Researchers:

Green shading denotes approaches which have resulted in research activity. Red shading denotes those with successful grant applications.

Month Researcher/Organisation Proposal/Study Outcome

2011

February De Montfort University PhD Pharmacy Research Student, Jo Griffin

Are Clostridium difficile spores surviving the infected linen wash, within the parameters of NHS policy HSG (95)18?

Housekeepers at LOROS collected bed sheets for analysis. Unfortunately the PhD student did not complete her work due to illness.

2012

July Professor Irene Higginson Palliative Care Head of Department, Department of Palliative Care, Policy & Rehabilitation, King’s College London

Early Specialist Palliative Care (ESPC) for patients with metastatic non-small-cell lung cancer: randomised controlled multicentre trial (ESPECiaL)

Study did not receive funding.

October Mr Andrew Dickman: Programme Lead, The Marie Curie Palliative Care Institute Liverpool; Consultant Pharmacist - Palliative Care, Blackpool Teaching Hospitals NHS Foundation Trust

The Chemical Compatibility of Drug Combinations used in End of Life - The ChemdEL Study.

Study considered by Research Committee, who felt the potential level of work required would outweigh any benefits to LOROS.

2013

January Nottingham Dissertation student, Olivia Hill Excellence in Practice: a comparison of hospice nurses' perspectives of care of the dying patient in the United Kingdom and North America.

3 staff participated in interviews July-August 2013

February De Montfort University pharmacy preregistration student, Janinder Toor

The role of the community pharmacist in life limiting conditions: The views of practice and hospice nurses.

5 members of the CNS team participated in a focus group in February 2013.

March Dr Carol Grant-Pearce, Senior Researcher, Applied Research Centre in Health and Lifestyle Interventions, Coventry University. Dr Andrew Turner, Senior Research Fellow, Coventry University.

Understanding the needs of patients with recurrent,

incurable and advanced cancer and their families for

a Palliative Care Self-Management Programme

HELP: (Help, education, learning, positivity).

Two bids developed with Christina Faull co-applicant, but unsuccessful in obtaining funding.

April Dr Ruth Parry, University of Nottingham VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care

Evidence base developed for protocol for recording and using video of doctor-patient consultations. Successful funding applications to Health

9

Foundation in 2012 and 2014 with Christina Faull and Luke Feathers as Co-applicants. Ruth Parry NIHR 5 year Senior Fellowship in 2014 for continued work in collaboration with LOROS and in other hospice settings additionally

April Christina Mungoshi, Social Work student at DMU

What are the potential barriers for social workers in addressing spiritual issues with service users receiving palliative/end of life care?

Christina met with social workers at LOROS.

May Dr Simon Conroy, University Hospitals of Leicester

Thinking ahead in dementia Christina Faull co-applicant. RfPB bid may 2014 unsuccessful; resubmission 2015.

July Sheffield Hallam University in partnership with Derby Hospitals Foundation Trust and Sheffield Teaching Hospitals Macmillan Lymphoedema Service

Developing a 3D surface scanning system to measure breast volume: A low cost option for use in the clinic that meets service provider needs.

Questionnaire completed by Amanda Honnor.

August Dr Vaughan Keeley, Consultant in Palliative Medicine, Derby Hospitals NHS Foundation Trust.

A feasibility study looking at the clinical and cost effectiveness of CDT in women with lymphoedema following breast cancer treatment.

Study did not receive funding.

September Raksha Pandya-Wood, Senior Research Fellow and Regional Lead in User Involvement NIHR, University of Leicester

Understanding the impact that service user

involvement has on cancer research and its usability. Christina Faull became a research participant

September Lisa Ingleby, Trainee Clinical Psychologist, University of Leicester.

Clinical Genetics in a Palliative Care Setting: A Qualitative Exploration of the Barriers and Levers Staff Report when Discussing Family Risk

Completed data collection LOROS October 2014, 13 nurse & doctor participants.

October Dr Julie Fish, Reader in Social Work & Health Inequalities, De Montfort University

Seeking a member of staff who might wish to join a stakeholder steering group for her project: around Improving the Cancer Journey for Lesbian, Gay, Bisexual and Trans (LGBT) people.

Penny Goss joined the steering group.

October Professor Christine Moffatt, CBE, Nottingham University & 3M Health Care Ltd, Loughborough

Christina Faull was approached by Prof. Moffatt with a view to collaborating on a KTP project to look at development of a pathway for the treatment of patients with chronic oedema in the community.

High level stakeholder event hosted at LOROS. Charitable donation of £4k to LOROS by 3M. Lymphoedema team key stakeholders and collaborators in project

October Nicola Turner, PhD student, University of Nottingham.

Young people living with and caring for a parent with palliative care needs.

Commenced recruitment at LOROS in September 2014.

10

November Professor Paddy Stone at St George’s University of London

The prognosis in palliative care study –II (PiPS2) Study has not received funding as yet

November Louise Robinson, Professor of Primary Care & Aging, Newcastle University

Approached Christina Faull to become a member of an external advisory group for NIHR programme Grant: Supporting Excellence in End of life care in Dementia (SEED programme).

Christina Faull external advisor role on 5 year programme of work in advanced dementia

November Professor Irene Higginson, Kings College London

Dr Andrew Wilcock (Nottingham University) approached Christina Faull about NIHR funded OPTCARE Neuro (Optimising palliative care for people with long term neurological conditions) study. Seeking sites for project.

LOROS/UHL may become a research site in 2015 if support from Clinical Research Network available

2014 March Professor Susan Corr, Head of Research and

Development at Leicestershire Partnership NHS Trust

Asked to meet with Christina Faull to discuss research development.

March Professor Jane Seymour, Nottingham University.

The ACTION project. A European funded, multisite project looking at the outcomes of facilitated advance care planning discussions with patients

Christina Faull PI at UHL to support palliative care team there who will be a site for this

May Mr David Bowrey, Consultant General / Oesophagogastric Surgeon & Honorary Senior Lecturer, Dept Cancer Studies, University Hospitals of Leicester NHS Trust

Potential collaboration on an NIHR bid: Internal and external barriers to initial consultation for patients with newly diagnosed oesophageal and gastric cancer.

Christina Faull co-Applicant. Bid submitted in January 2015

July Dr Karina Croucher, Lecturer in Archaeology, University of Bradford

Collaboration on a cross-disciplinary project looking to evaluate the use and impact of archaeological findings in promoting discussions about death and dying within professional training and with the general public

Successful application to Arts and Humanities Research Council for £200k. Christina Faull co-applicant working with CPEP. To commence April 2016

September Dr Barbara Lopes Lecturer in Psychology Faculty of Health and Life Sciences De Montfort University

Request for Collaboration and Endorsement of a Research Project on Social Media and Compassionate Mind Training for Cancer Patients.

11

Success in Applications for Funding of Research Studies

It is said that the ratio of application to success is perhaps 1:5 for research grants. Our grant

seeking activity and the outcomes are shown in table 5. We have been awarded £311961 of

research funding. Of course, not all of that comes to LOROS as many of the bids were successful

because of collaboration with others who have a lesser or greater role in the specific projects.

Table 5: Funding Applications:

Date Funder Lead

Applicant(s) Project Outcome

Amount Awarded

University of Nottingham

Ruth parry Christina Faull co-applicant

VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care

Granted 750

January 2011 Amyotrophic Lateral Sclerosis Association (USA)

Christina Faull Withdrawal Of Non-invasive Ventilatory (NIV) Support in ALS at the request of the patient: A retrospective exploration of the experience of close family.

Unsuccessful

February 2011

Association for Palliative Medicine Bursary

Jane Wale A study to explore hospice workers’ knowledge of, and attitudes towards, organ and tissue donation

Granted 1,650

March 2012 British Medical Association Vera Downs

Christina Faull Withdrawal Of Non-invasive Ventilation (NIV) from Patients with Motor Neurone Disease (MND): A retrospective exploration of the experience of doctors.

Unsuccessful

June 2012 MNDA Christina Faull Withdrawal of Ventilation at the request of a patient with Motor Neurone Disease (MND): A retrospective exploration of the experience of doctors, non-medical health professionals and close family.

Granted 50,000

July 2012 National Institute for Health Research

Professor Irene Higginson, King’s College London. Christina Faull co-applicant

Early specialist palliative care for patients with metastatic non-small-cell lung cancer.

Unsuccessful

March 2013 BMA Strutt and Harper

Christina Faull How can GPs improve their identification of patients with non-malignant illness who are in the last year of life, discuss patients’ wishes and develop advance care plans with patients?

Unsuccessful

April 2013 Association for Palliative Medicine Bursary

Laura Clipsham How do nurses working within an inpatient adult palliative care unit identify and support children, aged 18 years and

Granted 1,886

12

under, in need of additional bereavement support when they have a parent who is expected to die?

April 2013 Health Foundation,

Ruth Parry, Nottingham University Christina Faull and Luke Feathers co-applicants

VERDIS: Video-based communication research and training in decision-making in supportive and palliative care

Granted 196,041

August 2013 Patient & Public Involvement award from National Institute for Health Research Research Design Service

Zoebia Islam Pre-protocol work with family carers, patients, and members of Black, Asian and Minority Ethnic (BAME) communities who have an understanding or interest in palliative care/ end of life care services.

Granted 494

October 2013 MNDA Christina Faull Withdrawal of Ventilation at the request of a patient with Motor Neurone Disease (MND): A retrospective exploration of the experience of close family and non-medical health professionals (funding for further phase).

Granted 12,000

December 2013

HOPE against Cancer

Prof. Jayne Brown Christina Faull co-applicant

Understanding the needs of patients with recurrent, incurable and advanced cancer and their families for a Palliative Care Self-Management Programme HELP: (Help, education, learning, positivity).

Unsuccessful

Dimbleby Cancer care

Coventry University Christina Faull co-applicant

Understanding the needs of patients with recurrent, incurable and advanced cancer and their families for a Palliative Care Self-Management Programme HELP: (Help, education, learning, positivity).

Unsuccessful

February 2014

National Institute for Health Research: Research for Patient Benefit (RfPB) Programme

Dr Simon Conroy, Leicester University Christina Faull co-applicant

Thinking ahead in dementia care Unsuccessful

April 2014 Association for Palliative Medicine Bursary

Richard Kitchen How do surgeons and anaesthetists make decisions about surgery in patients who are frail, and what factors influence these decisions?

Unsuccessful

13

May 2014 Marie Curie Christina Faull Zoebia Islam co-applicant

Enabling preference, interdependence and choice for adults from South Asian communities at the end of life: The EPIC project

Unsuccessful

August 2014 Arts and humanities research council

Karina Croucher, University of Bradford, Christina Faull co-investigator

Continuing Bonds: Exploring the meaning and legacy of death through past and contemporary practice.

Granted £198,000

September 2014

MNDA Christina Faull Audit of NIV withdrawal and undertake development of guidelines.

Granted £13,600

November 2014

Health Foundation,

Ruth Parry, Nottingham University Christina Faull and Luke Feathers co-applicants

VERDIS: Video-based communication research in assessment and management of pain

Granted £37,426

More LOROS Staff who are Research Active

The development of a small research department has of course made those five team members

very research active. Research activity however, goes far beyond the research team’s roles and

includes:

Membership of LOROS research committee

Assisting with identifying and approaching patients and families who might be eligible and wish to participate in specific studies at LOROS

Assisting in data collection

Being a participant in research that recruits from staff at LOROS

Being a member of a research project steering group

Developing and undertaking a research project

In the 2013 staff survey, completed by 126 members of staff, we identified that 43% of

respondents were involved in research. Examples of involvement are shown in table 6.

14

Table 6: Staff Involvement in Research:

Aspect of research activity Details Number of staff 2011-current

Membership of LOROS research committee

Committee meets 4 times a year 14

Assisting with data collection Care in the last days of life for people with cancer: aspects of decision making: A qualitative study of the perspectives of clinical staff and bereaved relatives.

1

Assisting with identifying and approaching patients and families who might be eligible and wish to participate in specific studies at LOROS

VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care. Meet and greet teams Ward manager and nursing staff Day care

6 meet & greet admin staff 2 5

Being a participant in research that recruits from staff at LOROS

Exploring the experiences of ward nurses in identifying and supporting children with a parent who is dying Clinical Genetics in a Palliative Care Setting: A Qualitative Exploration of the Barriers and Levers Staff Report when Discussing Family Risk VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care: Video analysis of patient doctor consultations NIV Study: Phases I & II

14 13 16 3

Being a member of a research steering group

VERDIS Experiences of LGBT people with cancer

4 2

Developing a research project How do surgeons and anaesthetists make decisions about surgery in patients who are frail, and what factors influence these decisions? Exploring the experiences of ward nurses in identifying and supporting children with a parent who is dying

2 SpRs

Writing a paper or article for publication

11 (See table 9).

6 Consultants 9 SpRs 7 Educators 2 Nursing Staff 1 Family Support 1 Broadening Horizons 1 Research 1 Enablement Team 1 chaplain

15

Attending a conference March 2012: 9th Palliative Care Congress October 2013: Help the Hospices Conference March 2014: 10th Palliative Care Congress

1 Consultant 3 SpRs 1 Enablement Team 1 advancing practice

3 Consultants 3 SpRs 1 Nursing Staff 2 Educators

Presenting project findings as a poster

28 (See table 9).

Undertaking research qualification

30 credit module with the Open University: Investigative & Mathematical Skills in Science. MSc

1 Admin 1 OT completed 1 nurse educator doing dissertation 2014

Member of research reference group

Initiated in summer 2014 as grass roots development

2 research 4 education 1 home visiting service 1 OT 1 Day Therapy

Staff have been supported to develop their interest, skills and confidence in research activity

through a number of initiatives. These have included short sessions that have focussed on the

findings of our research, training in key competences such as consent and the required Certificate

for researchers (Good Clinical Practice) and a range of study events about evidence based practice

and research skills. Table 7 describes the events and the evaluation.

16

Table 7: Study Events about Evidence Based Practice & Research Skills:

Date(s) Event No.

of Attendees

2011

September Leicestershire, Northamptonshire & Rutland Academic Research & Audit Half Day. (Not evaluated). Not recorded

2012

May Leicestershire, Northamptonshire & Rutland Academic Research & Audit Half Day. (Not evaluated). Not recorded

2013

January Presentation of findings from: Care in the last days of life for people with cancer: aspects of decision making: A qualitative study of the perspectives of clinical staff and bereaved relatives. Hosted by Professor Jane Seymour and Professor Jayne Brown. (Not evaluated).

Not recorded

June Consent Training, run by UHL through LOROS. (Not evaluated). 7

June

Leicestershire, Northamptonshire & Rutland Academic Research & Audit Half Day. Learning I am most able to apply to my work is:

More engaged in decision making literature

I need to learn about grounded theory

Relatives (and patients) have adequate information and support re mesothelioma

Awareness of various research projects around and the approaches adopted

Discussion of pros and cons of handover process

Contacts to tap into – e.g. researchers

Handover is very important in a hospice setting. This needs to be well planned and thorough, but also carried out in a timely manner

The course will inform my practice by:

Reading decision making literature

Ensuring engagement with other researchers/activity

Spending time observing chaplains working

Documenting handover

14

June Good Clinical Practice training, run by UHL through LOROS. (Not evaluated). 5

2014

January Evidence Based Practice module of the Foundation degree, run by Zoebia Islam, for 11 weeks (part of the Fd programme, open to all staff to offer a better understanding about research).

6

17

Evaluation comments:

Very interesting. I learned a lot

The module was very interesting and informative

Have learnt some good research sites

Introduction of new area of study. Overall look at research. Well explained and supported

Have learned a lot about researching

How could it be improved:

No improvements

I feel no change is needed

Explain the jargon

Some of the module would benefit year 1 students

Not sure - perhaps more examples of completed pieces of research

February First Cup O’ Learning & A Slice O’ Cake lunchtime presentation (looking at the Broadening Horizons Project). (Not evaluated).

Not recorded

February

Good Clinical Practice training, run by UHL through LOROS. (Not evaluated).

14

May Cup O’ Learning & A Slice O’ Cake: VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care study What impact will this have on care you provide/work that you do?

Will consider and discuss topics that might be suitable for research with wider team

Raised awareness of research taking place

What attracted you to this session?

To gain an overview and update about VERDIS

Interest in topic and hearing about process involved

I wanted to learn more about video based research

I am very committed to good communication skills among the clinical team and wanted to hear how video is being used in teaching

Interested in the research taking place at LOROS

8

July Cup O’ Learning & A Slice O’ Cake: Excellence in Practice: a comparison of hospice nurses' perspectives of care of the dying patient in the United Kingdom and North America. What attracted you to this session?

The opportunity to learn more about cross-cultured difference/similarity in palliative care

Looking at hospice nurses perspectives

6

18

General interest about research in EOLC

To know about differences in EOLC in USA compared to here

Interest in difference between UK and USA and had contact with Olivia when she first enquired about placement at LOROS

Interest in topic and research methods

July A Beginners Guide to Research study day; run by Zoebia Islam. The learning points I am able to apply to my work are:

Understanding and accessing research in order to fulfil link nurse role

Using ethical approval correctly and applying these practices to day to day work in order to go about things properly

The course will inform my practise by:

Developing research skills for practice and link nurse role

Giving me some areas to think of with regards to my project. To also give me areas of thought about improving the EBP culture in my workplace.

To be able to inform colleagues about the importance of research, the importance of reading the studies and applying evidence based practice

Applying and allowing justice between all parties involved within the research project

8

September Leicestershire, Northamptonshire & Rutland Academic Research & Audit Half Day. What impact will this event have on your future practice:

More understanding of research in practice

Reflect on my practice/my service and change accordingly

Encouragement of SpRs in their research mainly

Contacts of researchers

Some interesting refs to read

Sharing collaboration

Greater integration of research across East Midlands and AHP beyond nursing

Thought provoking

16

September Cup O’ Learning & A Slice O’ Cake: LOROS’ Research in Motor Neurone Disease: Use of Ventilation & it’s Withdrawal

What attracted you to this session?

Subject matter - aware of my own ignorance surrounding MND

I work with people who have MND so wanted to improve understanding of issues

The subject and working with MND patients in the hospice

Interested in palliation of MND symptoms/discussions/ethical issues/research

18

19

Need to know more about MND and NIV

The withdrawal of NIV and MND patients is a really rarely discussed subject good to talk about it

Do not know a lot about NIV

Ethical viewpoints vs emotional problems

Wanted to know more about issues faced by patients and staff

Christina Faull always very interesting and have specialist interest in MND

October Cup O’ Learning & A Slice O’ Cake: Acceptability of Early Intervention services in mental health for BAME communities: Some lessons learned. What attracted you to this session?

Interesting subject matter-issues transfer to palliative care

Zoebia's enthusiasm

Mental health issues in the communities

8

October

Evidence Based Practice module of the Foundation degree, run by Zoebia Islam, for 11 weeks (part of the Fd programme, open to all staff to offer a better understanding about research). (Not yet evaluated).

4

20

Increased Outputs Including Publications & Other Methods of Dissemination

A very key ‘output’ to being research active is the number of people that have been recruited to participate in research. There is strong indication in many branches of medicine that patients who are involved in research have better outcomes including a sense of fulfilment and feeling of contributing to improvements for future patients. We know that patients in palliative care are very keen to be involved in research for a range of reasons. Less is known about the benefits to staff of involvement in research but it is a marker of an organisation that is willing to reflect and learn. Table 8 shows the number of research participants by group and study. We have more studies that recruit staff as participants than patients or carers reflecting the larger focus in our portfolio of work to date on development of services and staff expertise.

Table 8: Patient, Family and Public Involvement in Research:

Study Patient

Participants Family/Carer Participants

Staff participants

Improving Palliative Care for Tomorrow (ImPaCT)

12 6 2

The donation of post-mortem tissue samples, for use in ethically approved research projects, from consented LOROS patients.

9 N/A N/A

Care in the last days of life for people with cancer: aspects of decision making: A qualitative study of the perspectives of clinical staff and bereaved relatives.

N/A N/A 14

Withdrawal of ventilation at the request of a patient with MND

N/A 17 50 (none from LOROS)

VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care (Video analysis of patient doctor consultations)

11 5

16 (+ 1 external medical

student)

VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care:

37 17 5 doctors

21 other professionals

Clinical Genetics in a Palliative Care Setting: A Qualitative Exploration of the Barriers and Levers Staff Report when Discussing Family Risk

N/A N/A 13

Young people living with and caring for a parent with palliative care needs.

2 3 N/A

Excellence in Practice: a comparison of hospice nurses' perspectives of care of the dying patient in the United Kingdom and North America.

N/A N/A 3

Exploring Hospice Nurses’ Experiences of Identifying Children’s Bereavement Needs Before the Death of a Parent

14

TOTAL 58 43 66

21

Table 9 gives an overview of these outputs. The full list of these is extensive and included in

appendix 3. The National Palliative Care Congress takes place very two years (2012 and 2014) and

is a key conference for our research activity to be presented. The Research Committee have

awarded bursaries to enable attendance at these and other meetings. Appendix 4 describes our

conference presence in detail.

Table 9: Dissemination of Research: Papers, Posters, Reports & Conference Presentations:

Journal papers

Conference poster

abstracts Articles

Evaluation reports

Conference oral

presentations

2012 1 9 1

2013 5 4 2 1

2014 4 15 1 2

We have received invitation to discuss our work at local, regional and national meetings. These

are described in table 10. This includes an invitation to discuss how LOROS has become more

research active and the challenges in this at the regional Help the Hospices conference in 2014.

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Table 10: Invited Oral Presentations:

Conference Topic Speaker Invitation From

September 2011: Sue Ryder research network seminar ImPaCT project: Evaluating a new foundation degree in palliative and supportive care.

Prof. C Faull Sue Ryder Care Centre

June 2012: MNDA National Care Centre Day Ethical issues around the withdrawal of treatment Prof. C Faull Karen Pearce Director of Care (South), MNDA

September 2012: Regional MNDA Study Day Respiratory management (including how NIV is managed)

Prof. C Faull Helen McClean, RCDA Northern Ireland MNDA

May 2013: St Christopher’s Hospice and King’s College London Annual National MND Conference

Ethics of treatment withdrawal Prof. C Faull Dr. Nigel Sykes, Medical Director

November 2013: Association for Palliative Medicine National Advanced Neurological Diseases Special Interest Forum study day

Research exploring Ventilation withdrawal in MND Prof. C Faull Association for Palliative Medicine Advanced Neurological Diseases Special Interest Forum

March 2014: Local training programme Presentation on NIV study - delivered as part of UHL Core Medical Trainee Teaching Programme's session on Palliative Care.

Prof. C Faull Dr Jenni Harrison, Academic Clinical Fellow - Geriatric Medicine University of Leicester

June 2014: Regional Help the Hospices roadshow The Realties of Driving Innovation Prof. C Faull Antonia Bunnin, Director of Hospice Support & Development, Help the Hospices

March 2015: Association for Palliative Medicine National advanced neurology special interest Group study day

Withdrawal of ventilation research Prof. C Faull Aruna Hodgson, local oraniser

June 2015: St Christopher’s Hospice and Kings college London Annual National MND Conference

Ethics of tracheostomy ventilation Prof. C Faull Dr. Nigel Sykes, Medical Director

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Impact of Research on Practice & Care

The focus of our research activity is to improve the care of patients and their families and the

development of practitioners and services. It is important therefore to take stock of how the past

three years has impacted on these stated objectives and how our projects are changing what we

do.

How our projects are changing what we do:

Mariam George Opioid Conversion Chart: Introduction of a User-Friendly Version

The Registrar, Mariam George, developed a user friendly Opioid Conversion Chart to help nursing

and medical staff quickly and safely make changes in pain management for patients. A

questionnaire evaluation endorsed it’s usefulness amongst nursing, medical and education staff,

and Mariam presented her work in a poster at the National Palliative Congress in 2014 (figure 1).

A Study to explore the use of patient and carer feedback in a Foundation Degree (by Dr Rachael

Dixon, July 2011)

Recommendations were made for education practice and personal development of HCA staff at

LOROS, outside of accredited courses. This, together with findings from the ImPaCT study of the

LOROS-University of Northampton Foundation Degree in palliative and supportive care, has helped

inform some of the foundation degree and communication skills work with support workers and

health care assistants.

The withdrawal of ventilation at the request of a patient with MND.

The influence of this programme of work is still in its early stage. However several key actions

have been taken. Because the findings suggested that many doctors felt very alone and

unsupported in this challenging area of work a National position statement has been written by

the Association for Palliative Medicine and welcomed by doctors. The LOROS guidelines have

been revised and are available to all via our website and the MNDA website. National Guidance

and audit will be developed in 2015. Word of mouth knowledge about the work has led several

Consultants to approach Professor Faull for advice and support and would appear to have led to

excellent outcomes for patients, the consultant and the team involved.

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Figure 1. Poster of Evaluation of an Opioid Conversion Diagram. Presented at PCC 2014.

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Hospice workers’ knowledge and attitudes to organ and tissue donation study (by Dr Jane Wale)

Recommendations for LOROS:

Increase staff awareness and knowledge – a teaching session ideally facilitated by a member of the tissue donation team at UHL. A brief teaching session to be included as part of staff induction.

Clear guidelines on who can donate what and how. Guidelines on who can donate what are constantly changing, by establishing links with the donation team at UHL; information is more likely to be up-to-date.

Establish the demand for donated tissue – there is currently a national shortage of approximately 500 corneas / year for transplantation and more are needed for research, but for the bone bank scheme, how many donations would be too many? There is a risk of causing distress if donation is wanted by patients and families as a result of discussions with hospice staff, but then is not achievable or needed.

Increase patient awareness of the option of tissue and organ donation. Currently this is only done in response to patient cues, but if we knew someone was on the organ register, it may be appropriate to initiate a conversation.

Consider asking ‘do you carry a donor card’ as an admission question, and to explore and discuss the options, at a later date, if the patient answers ‘yes’. This is to be discussed at a patient/carer forum to see how acceptable this feels for patients.

Discussions should happen with patients when they have the mental capacity to make informed decisions.

Discussions about organ and tissue donation should not be initiated with relatives after the patient’s death. This was felt to be traumatic, adding to distress and to be inappropriate.

The following changes have been implemented and described in a poster presentation at the National Palliative Care congress in 2014 (Figure 2):

Links established with local and national Organ & Tissue Donation Teams

These links have resulted in teaching sessions for LOROS staff

How to approach Organ & Tissue Donation with patients, discussed at Patient & Carer Participation Group

Written information being compiled for patients /carers

Electronic way of recording patient’s wishes to be identified

Guidelines being developed for clinical staff to refer to

Figure 2. Poster presentation about changing practice in the light of research findings presented

at PCC 2014.

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Exploring the experiences of ward nurses in identifying and supporting children with a parent

who is dying (by Dr Laura Clipsham)

Another Registrar, Laura Clipsham, has explored the challenges and gaps in knowledge, confidence

and services in supporting the children of patients who come in to LOROS. An initial audit led to

a task group working to improve this aspect of care. A second audit showed that we have

improved against the National standards of care. The findings of Laura’s interviews with Nurses,

awarded a National bursary by the Association for Palliative Medicine, are being digested and

discussed and an action plan agreed to take the recommendations forward. Laura presented her

work in a poster at the National Palliative Care congress (Figure 3.)

Figure 3. Poster presentation at the PCC 2014 of work by Dr Laura Clipsham exploring the

experiences of Nurses of supporting children of patients admitted to the LOROS ward.

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It is vitally important to integrate findings from research into the care at LOROS. This can assure

that we have the highest quality, evidence-based services and patient outcomes. It is also

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important that the resources that have been invested in research (financial, personnel and

research participants) are effectively used. Both findings from our own research and from the

work of others need to be communicated, discussed and actioned to get research into practice.

The actions leading to such integration require considerable organisational focus in order that

change is achieved. In this section we have captured some examples of how this is happening at

LOROS.

Research Newsletter

Launched in autumn 2012 there have been 6 editions of the research newsletter, showcasing

research activity and findings to staff across LOROS and to a wide database of external

professionals. We have sought their views, and often their involvement, in contributing to articles

that discuss the value of research at LOROS, to their care and support. Feedback has shown how

this newsletter may be a vehicle for influencing practice both in LOROS and beyond:

‘The latest research newsletter is an enjoyable and extremely informative read and has again

broadened and deepened my understanding of the issues around end of life care’ David Lindley,

LOROS Trustee

‘It makes really interesting reading and is very impressive. I was struck in particular by its focus on

research into practice and how enticing it makes it feel’ Heather Richardson, National Clinical

Lead, Help the Hospices

‘I was really pleased to see the article about donation, it’s very satisfying to see that the outcomes

of my study have been acted on and things may change as a result. It makes it more worthwhile!’

Dr Jane Wale, Palliative Care Consultant, Milton Keynes

Staff views

We have sought the views of staff about how they think research is impacting on them, the care

they provide and on the care of patient and families:

‘Being directly involved in the research project Sedation at End of Life has made me more aware of the impact that pre-emptive prescribing has on nursing practice.’ Penny Goss Staff Nurse

‘I am very committed to good communication skills among the clinical team and wanted to hear how video is being used in teaching.’ Feedback from VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care, Cup O’ Learning session.

‘The withdrawal of NIV and MND patients is a really rarely discussed subject - good to talk about it.’ Feedback from NIV withdrawal Cup O’ Learning session.

The Staff Survey gave us insight into staff views about research in a more general context:

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‘LOROS is a centre of excellence in palliative care and is a good place to integrate research,

practice and education.’

‘Research continually shapes our practice. Research is part of my professional code.’

‘Because greater knowledge means a better understanding of how to treat and care for patients’

‘LOROS needs to know of all new developments, information and findings’

‘Patients often like to participate in research - feel that they are helping, to benefit others if not

themselves’

‘Without research LOROS will never be able to move forward’

‘As an organisation we need to be actively working in research to ensure the delivery of patient

care is current’

‘For care to be effective it needs to have a sound basis. This is found through research’

‘Practice is dynamic and constantly evolving we should keep up to date with changes and new

knowledge and concepts’

‘We are a centre of excellence and need to promote and establish best practice’

‘We cannot be inward thinking - for LOROS to continue as a gold standard educator we must be

involved in research’

‘There is always room for improvement, no matter how well an organisation is doing so research is

important to be even better when looking at different ways with strengths and weaknesses’

What staff said about their learning gained from attendance at the 2014 Palliative Care Congress

and how this will impact on care:

The importance of the emotional response to breathlessness was made clearer to us. We are now considering how we can promote and teach nurses, occupational therapists and physiotherapists about their role in the management of breathlessness.

Watching a very moving and powerful play about assisted suicide “An instinct for kindness” – made me understand more about the impact of living with a disabling illness. The practical challenges of actually going to Dignitas were unknown to me.

“Mindfulness” as an approach has stimulated several members of the team to read around this and get some training, so we can offer this approach to patients within the service

We have already used some of the material around Decision Making Theory, for a training session with our community nurse specialist team. In particular, some of the thinking errors that we need to consider when helping patients undertake advance care planning. We have used some of the material to start an ethics forum/discussion group to make space to discuss

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some of our practical ethical challenges – e.g. the ethics of discharging patients against their will, who are not immanently dying, to allow admission of the next symptomatic patient.

There was a useful discussion with a national lead around patient outcome measurement, including a project with the MND association on using patient outcomes to help stratify/direct level of intervention in a team with different levels of seniority.

Highlights for me included a lecture on cachexia - which included definitions of pre-cachexia, cachexia and refractory cachexia. Explanation about the underlying causes and pathology as well as treatment options, including exercise, we could start using more proactively locally.

Developing the role of volunteers to support the inpatient setting, and the different training available to develop this at LOROS, was of particular interest.

Using the resources developed in the North West called “Opening the Spiritual Gate” and liaising with the chaplaincy team about programmes available to raise awareness of spirituality among clinical staff. Also understanding better the relationship and differences between spiritual distress and religious distress. The ultimate objective - to enable people to strengthen the inner person and minimize catastrophe.

Venous thromboembolism: learning more about the second leading cause of death in Cancer patients and how the experience of having a VTE has a significant impact on the cancer journey and on daily living. While a 'blanket approach' (as in acute settings) is not needed or appropriate for all, this area of focus made me think that we should be more proactive in risk assessment e.g., prevalence higher in some cancers and during cancer treatment.

Impact on Patient Care beyond LOROS

The research we do will have an application beyond LOROS to other hospices, professionals and organisations. The dissemination of findings is key to having this impact. That may be through papers published in journals [indeed journals have an impact factor that relates to how much the findings are looked at]; through conferences; through our website pages; and through the newsletter.

It can be very difficult to identify how our work has a direct impact on care beyond LOROS but we have some clear examples related to our work on the withdrawal of ventilation at the request of a patient with MND.

Contacted by three Doctors who were caring for patients with MND who wished their ventilation to be stopped. They had heard of Christina’s work thought study days and through help the hospices on line and wished to discuss the care.

Contacted by a family member offering support for the study, after having seen a write up written by Christina Faull through MNDA Twitter.

Christina also developed the Association for Palliative Medicine of Great Britain and Ireland 2013

position statement concerning the withdrawal of ventilation at the request of an adult patient

with advanced neurological disease.

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Mr Mike Roberts, Head of Service at the UHL Bone & Tissue Bank, emailed Dr Luke Feathers to say that the two inspectors from the Human Tissue Authority had spent time inspecting the Bone Bank over a three day period, and were ‘very interested in the LOROS project’. He added that ‘They were very impressed; they felt it [was] a very worthwhile project. Also they could not find fault with any of the documentation or the stored specimens’.

A Specific National Profile in the Research & Palliative Care Communities

It is early days in LOROS research development and reputation requires the building of a body of work. We believe however that in the past three years we have grown a reputation in research in the areas of:

Withdrawal of ventilation in MND

Communication skills in palliative care. Through our growing collaboration with Ruth Parry at Nottingham University and our high level educational provision.

We are also known for our interest in applied research in end of life decision-making with the

diverse strands of ethnic diversity, dementia and the utilisation of humanities. This focus is on

enabling professionals to support patients more effectively and our work involves generating both

primary understanding and testing educational interventions.

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Appendices

Appendix 1

LOROS Patient/Carer Interviews

David Barnard

How did you come to be involved in research?

I’ve been interested in research for some years, but in different fields to the medical profession, until, really, for my son’s sake I had to start looking. Often my son was too tired or too ill to take anything in, or to do anything, so you develop a joint way of working within a family

There is of course research, and ‘research’ – it’s like saying there are statistics and damn lies basically. There are also screaming media and internet headlines on miracle cures, especially for cancer. Being human, and in pain/anguish/need, we grasp at straws – we become vulnerable.

All those things I’ve become aware of, which makes our family more aware of the constraints on the professional people, so in effect you begin to share not only knowledge but understanding of each other.

Why do you think it is important for LOROS to be involved in clinical research?

I feel that research is important to LOROS.

LOROS is very different to the NHS; smaller, calmer, quieter. It can offer unique insights, not only into the medical care but also into patient/carer/professional interaction and, in particular I feel, in to providing understanding, care and development, in treating the whole person rather than just the apparent illness.

Do you feel that the perspective of lay representatives/patients can bring an important viewpoint to research meetings, such as stakeholder or focus groups?

I think it’s probably one of the most important developments happening at the moment. I felt for a long time as a Social Worker and quite senior Social Work Manager that clients and families should be more actively involved in decision making. Now, after our direct experiences of medical services, I feel even more strongly on this subject. I feel that whether this happens or not depends on whether the professional agencies and the individual staff have the self-confidence in their abilities and empathies with patients/carers to face up to possible challenges or suggestions they may not really like.

How do agencies and their staff understand the effect of their services – their attitudes, their collective conventional wisdom - on the people they are supposed to be assisting, if they don’t allow those people to tell them. After all, many patients/carers have been professional people themselves, or qualified, and experienced in many other walks of life, used to discussions and making decisions in very difficult areas.

If you can build up people to be involved in every sphere of the services...who else can give LOROS the information that they need. And it need not be at high level – think of all the small, well

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thought out, lower key levels of research you can do – as with the 5 senses – where you can smooth out administrative problems that people are facing because you know about them...It’s not only in the medical sense, it’s also in the sense of a well-run organisation.

In what ways do you feel that research can make a difference to patients and carers?

It’s a two-way street basically, because my involvement at a low key level in research – and more I think in participation – has helped me to learn a great deal which I can pass on to my wife and son and to other people, without being a specialist in those kind of things or trying to dress myself up as a specialist.

It widens knowledge and understanding but it also makes you much more aware of what the professional person faces every working day of their lives. The constraints, the stress, the tension, the problems….You begin to understand more about what’s happening.

In effect, you begin to share not only knowledge but understanding of each other.

Do you think there are any assumptions about research that deter people from becoming involved?

Yes. I feel the reluctance is due more to patients and carers feeling they have little or nothing to offer, or unsure about attending meetings etc., and with professional staff. That’s really why I’m so glad that LOROS is making such an effort in helping patients and carers to participate in every sphere of research; because I think if people can start to participate at one level, then they can move on because they gain confidence, and they realise they do have something to offer. I really do feel it is important for the development of any agency really, not just LOROS, to listen to those people.

People may also be wary or frightened of exposing the kind of pain and anguish that they’ve been through.

And that means that LOROS has to develop the skills to draw those people in.

What do you think LOROS should do in order to help that?

It’s important that LOROS uses every opportunity – whether that’s posters, pamphlets, whatever – and it does to a great extent – to involve, and to draw people in; and, in my experience of the Patient and Carer Participation Group, that is happening.

What value do you think there is in research having more of a presence - a ‘face’ - at LOROS; i.e. through patient leaflets/posters?

I think it’s one of the emerging areas that hospices and other voluntary agencies, like LOROS, have to work on.

It’s very important. I think it needs to develop so that it draws people in gently. I would see research as possibly the further end of a progression of involvement by patients/carers. I don’t think it’s something you can suddenly grab hold of somebody and say “would you like to be involved in this research”, unless they’ve already made some kind of commitment to LOROS, in whichever way they’re doing it.

It’s preparation – getting people to understand the benefits for others and for the medical professional staff.

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If it can’t be done in an agency like LOROS, then it won’t be done in the vast agencies out there.

What would your advice be to other patients/carers who are interested in becoming involved in research?

What I would suggest is pretty simple really…firstly, accept that you do have something to offer by being a patient or a carer. You have direct experience of being on the receiving end, and what you receive is sometimes not what you want or what you need.

Also, do not try to become a professional yourself…remain what you are; someone who wants provisions for people to improve and develop. What I’ve said is that you have the experience which the professional staff, in the main, don’t have, which is being on the receiving end. The professional staff give and you have to take, but what seems to have been forgotten over the years is that the people who take can also give back.

Things work better if the provider and the receiver actually work together to understand and then you find out that you have something to give as well.

I also feel that it’s important to understand the need for confidentiality on the part of the patient/carer representative when becoming involved in this way.

Jeanne Rae

How did your links with LOROS develop, after your husband died?

I had always wanted to give something back to LOROS but it took around four years after my husband died before I finally felt able to become more involved. I responded to an appeal for help in a copy of the *LOROS+ magazine but I wasn’t sure what I could offer.

In the magazine they talked about patient/carer committees, so I volunteered to be a representative on the Patient and Carer Participation Group as I am particularly interested in the dialogue between patients and carers and I’d had such a brilliant experience with the communication here [at LOROS].

Whilst at a patient/carer meeting I happened to see the doctor who cared for my husband. I told him this was an area I was interested in and a short while later I was contacted by LOROS about the VERDIS: Video based communication research and training in decision making and empathy in supportive and palliative care study. I thought it sounded very interesting and said I would very much like to be involved. I subsequently spoke in more depth to Ruth Parry, who is leading the research.

Good communication is about being very sensitive to the other person’s needs. Sometimes your desire to say something can be greater than that person’s need to hear it; it’s a finely judged balance.

For example, one of the doctors who cared for my husband told me that she was able to recognise when I’d had as much as I could take when I started to respond to her questions in a particular way. At that point she used to say, “I'll stop talking to you now because I can see you can’t take any more”. That experience has stayed with me. I thought it was extremely caring, very intuitive and so helpful.

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The staff [at LOROS] deal with people at their most exposed; people who may normally be very controlled. LOROS provided an incredibly safe space for me to be able to talk frankly about my concerns without feeling as if I was being disloyal to the patient.

Do you feel that the perspective of lay representatives/patients can bring an important viewpoint to research meetings, such as stakeholder or focus groups?

Very much so. Care is about people. With research or stakeholder meetings there are protocols, systems and processes that have to be followed but it’s important to remind yourself that this is about people.

Research is like a hot air balloon in the sky; all the protocols and processes are the fire and the balloon, but underneath there’s a basket with people in. Like the balloon, the processes and procedures need to be strong, but without the people you’ve just got a balloon floating free.

Do you feel it’s important that LOROS continues to go down the road of research and looks at what research findings can do to help benefit the patient experience?

Absolutely, because for all I’ve had brilliant experiences here, I’ve had some dreadful experience of patient communication in the NHS. Not because staff are cruel, but because they’re busy and it’s not their focus.

I think hospices, in the main, get it right. Research can help ensure that they carry on getting it right, and some of the results may cascade out to other professionals, which I think is brilliant. That’s why I wanted to be involved.

Have you found that you are more aware of research generally now, as a result of your involvement (i.e. what is happening in the newspapers /TV with a research focus)?

Because my husband had prostate cancer and was involved in trialling drugs [within the NHS], I was aware of some of the processes through which drugs are researched.

VERDIS has definitely given me an insight into how rigorous the whole research process is.

What would your advice be to other patients/carers who are interested in becoming involved in research?

One of the things that held me back a little was the length of time that had passed before I volunteered. I wondered what value I could add after such a gap?

I’ve realised that just because you can’t do something immediately, your experience is still valuable and can be made use of. If you feel you want to do something, just get in touch with LOROS.

How would you encourage professionals to ask if patients/carers would like to become involved in research?

The VERDIS research looked in great detail at how and when people are contacted with regard to studies. In my case the article in the magazine acted as a good prompt but I know from patient groups that it’s a real challenge for professionals to know when it’s a good time to encourage people to get involved.

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Hospice care is one of those things that you don’t think about until you need it, and then when you need it, you’re busy dealing with illness. Some people may wish to be involved in the immediate aftermath of bereavement whilst others, like me, need more time.

There’s no one answer. I think the only thing you can do is keep channels open, and remind people that there are many ways they can support LOROS, including research.

Julie Gardner

Do you feel that the perspective of lay representatives/patients can bring an important viewpoint to research meetings, such as stakeholder or focus groups?

I definitely do. I think it’s difficult for professionals sometimes because in the medical field, or in the educational field that I work in, there’s understandings we take for granted, but I think talking to people who are lay people, if you really listen, and really work out what they’re trying to say, often not having the vocabulary to say it because they’ve not got that jargon, I think that's where early insights can happen.

Do you think there are misconceptions about research?

That it’s clever, highfaluting stuff – it’s not for me!

From your experience of being interviewed for a study, do you think that is the case?

I don’t think that’s the case.

I think of research as being something that’s academic, but it doesn’t have to be, does it. Research can be, in simple terms, we want to know what you think or what your experience is. A lot of people, I suspect, if you said to them “Would you be interested in taking part in research?” might be put off by that; but if you said to them “We really want to know what you think and what your experiences have been, because that will help us in the future” that would be a very different way of putting it.

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Appendix 2

Information Leaflet about Research for Patients & Families

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Appendix 3

Journal Publication of Findings

2012

Papers

POULTNEY, J. WISEMAN, F. WATERHOUSE, E. FAULL, C. (2012) The impact on bereaved carers of being involved in medical student education. Pall Med, 26 (2), pp. 185-6 doi: 10.1177/0269216311415453.

Abstracts

ROWE-HAYNES, C. FAULL, C. and OLIVER, D. (2012) Exploring issues for doctors surrounding the withdrawal of NIV at the request of patients with MND. BMJ Supportive Palliat Care, 2:Suppl 1.

WALE, J. FAULL, C. (2012) An evaluation of hospice staffs' knowledge of organ and tissue donation. BMJ Support Palliat Care 2012;2:Suppl 1 A32 doi:10.1136/bmjspcare-2012-000196.92.

FAULL, C. (2012) What is the impact of training nurses in resuscitation decisions in advanced illness? BMJ Support Palliat Care 2012;2:Suppl 1 A33 doi:10.1136/bmjspcare-2012-000196.95.

ROWE-HAYNES, C. FAULL, C. OLIVER, D. (2012) Exploring issues for doctors surrounding the withdrawal of NIV at the request of patients with MND. BMJ Support Palliat Care 2012;2:Suppl 1 A34 doi:10.1136/bmjspcare-2012-000196.98.

FAULL, C. PHELPS, K. HANDSLEY, S. WALE, J. NOGUERA, A. (2012) What are the impacts of communication skills in a foundation degree for support workers? BMJ Support Palliat Care 2012;2:Suppl 1 A35 doi:10.1136/bmjspcare-2012-000196.101.

FAULL, C. BEECHING, J. (2012) A review of the symptoms experienced by patients sent home from hospital as rapid discharges at the end of life. BMJ Support Palliat Care 2012;2:Suppl 1 A49 doi:10.1136/bmjspcare-2012-000196.141.

DE VOS, S. BADGERY, K. NOBLE, S. METCALFE, M. STEWARD, W. COOKE, C. (2012) Hospital palliative care team survey of symptom control requirements of pancreatic cancer patients. BMJ Support Palliat Care 2012;2:Suppl 1 A71 doi:10.1136/bmjspcare-2012-000196.206.

ATKINSON, R. (2012) A service development to educate healthcare assistants about physical rehabilitation which focusses on independence in an inpatient hospice unit. BMJ Support Palliat Care 2012;2:Suppl 1 A76-A77 doi:10.1136/bmjspcare-2012-000196.223.

POWELL, B. (2012) Supporting staff wellbeing within the MND team. BMJ Support Palliat Care 2012;2:Suppl 1 A79 doi:10.1136/bmjspcare-2012-000196.231.

DE VOS, S. BADGERY, K. NOBLE, S. METCALFE, M. STEWARD, W. COOKE, C. (2012) What end of life care do pancreatic cancer patients receive at a tertiary hepatobiliary unit? BMJ Support Palliat Care 2012;2:Suppl 1 A100-A101 doi:10.1136/bmjspcare-2012-000196.296.

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2013

Papers

PAL, L. DIXON, R. FAULL, C. (2013) Utilising feedback from patients and their families as a learning strategy in a foundation degree in palliative and supportive care: a qualitative study. Nurse Educ Today. 2014 Mar; 34(3):319-24. doi: 10.1016/j.nedt.2013.06.012. Epub 2013 Jul 6.

WALE, J. ARTHUR, A. FAULL, C. (2013) An analysis of knowledge and attitudes of hospice staff towards organ and tissue donation. BMJ Support Palliat Care doi:10.1136/bmjspcare-2012-000416.

FAULL, C. WINDRIDGE, K. OCKLEFORD, E. HUDSON, M. (2013) Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter? BMJ Support Palliat Care, doi:10.1136/bmjspcare-2012-000193

OLIVER, D. FAULL, C. (2013) Non-invasive ventilation in amyotrophic lateral sclerosis/motor neurone disease. Minerva Pneumologica 52(1): 27-38.

HIRSCH, CA. MARRIOTT, J.F. FAULL, C.M. (2013) Influences on the decision to prescribe or administer anticholinergic drugs to treat death rattle: A focus group study. Pall Med, doi: 10.1177/0269216312464407. Palliat Med, September 2013 vol. 27 no. 8 732-738.

Abstracts

TAPLIN, S. (2013) But what happens in a Hospice? Interprofessional Learning in the Workplace. BMJ Support Palliat Care 2013;3:Suppl 1 A26-A27 doi:10.1136/bmjspcare-2013-000591.70. BROADHURST, D. BROWN, J. (2013) ENTER - Enabling Nurses to Engage in Research: Developing a Culture of Enquiry in Clinical Environments. BMJ Support Palliat Care 2013;3:Suppl 1 A30-A31 doi:10.1136/bmjspcare-2013-000591.81. BRANT, F. WILFORD, B. MAHONEY, A. CLEMENTS, A. OLIVANT, M. HENFREY, M. BROWN, J. (2013) Providing a Seamless Service - Assistant Practitioners Working Across Hospice and Community Settings: A Pilot Study. BMJ Support Palliat Care 2013;3:Suppl 1 A45-A46 doi:10.1136/bmjspcare-2013-000591.123 KAVANAGH, J. FAULKNER, S. FAULL, C. (2013) VALE: Volunteers at Life’s End, the LOROS Care Homes Project. BMJ Support Palliat Care 2013;3:Suppl 1 A11 doi:10.1136/bmjspcare-2013-000591.26

2014

Papers

PARRY, R. PINO, M. FAULL, C. FEATHERS, L. SEYMOUR, J. (2014) Evidence-based guidance for the

design of video-based research. Society for Research in Rehabilitation, Clinical Rehabilitation.

Submitted

41

CLIPSHAM, L. ISLAM, Z. FAULL, C. (2014) "I'd want somebody to get it right for my kids": Experiences of hospice inpatient nurses in supporting children before the death of a parent. International Journal of Palliative Nursing. In press.

MARKHAM, S. ISLAM, Z. FAULL, C. (2014) I never knew that!: Why do people from Black and Asian

Minority ethnic groups in Leicester, access hospice services less than other groups? A discussion

with community groups. Diversity and Equality in Health and Care, Volume 11, Numbers 3-4,

September 2014, pp. 237-245(9).

FAULL, C. ROWE-HAYNES, C. OLIVER, D. (2014) The issues for palliative medicine doctors

surrounding the withdrawal of NIV at the request of a patient with MND: a scoping study. BMJ

Support Palliat Care, doi:10.1136/bmjspcare-2013-000470.

Articles

E-Hospice article: Newman H. ‘Soul Space – a weekly ‘time-out’ to support the wellbeing and

spiritual care of hospice staff’, published online 30 Sept. 2014: http://www.ehospice.com/uk/ArticleView/tabid/10697/ArticleId/12431/language/en-GB/View.aspx

Abstracts

WALE, J. ARTHUR, A. FAULL, C. (2014) An analysis of knowledge and attitudes of hospice staff towards organ and tissue donation. BMJ Support Palliat Care 2014;4:1 98-103 Published Online First: 18 April 2013 doi:10.1136/bmjspcare-2012-000416.

FAULL, C. ROWE HAYNES, C. OLIVER, D. (2014) Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Support Palliat Care 2014;4:1 43-49 Published Online First: 29 July 2013 doi:10.1136/bmjspcare-2013-000470.

PARRY, R. FAULL, C. FEATHERS, L. (2014) Views of hospice staff, patients and their Significant others on video-recording consultations for use in research and teaching. BMJ Support Palliat Care 2014 4: A2-A3 doi: 10.1136/bmjspcare-2014-000654.6.

CLIPSHAM, L. VOSTANIS, P. O'REILLY, M. FAULL, C. (2014) Exploring Hospice Nurses' Experiences

of Identifying Children's Bereavement Needs Before The death of a Parent. BMJ Support Palliat

Care 2014;4:A15 doi:10.1136/bmjspcare-2014-000654.41.

FAULL, C. PHELPS, K. REGEN, E. OILVER, D. MCDERMOTT, C. ROWE-HAYNES, C. (2014) Withdrawal

of NIV at the Patient's Request in MND: Exploration of the Issues Related to Communication. BMJ

Support Palliat Care 2014;4:A25 doi:10.1136/bmjspcare-2014-000654.68.

PILSWORTH, A. BLANKLEY, K. FAULL, C. (2014) Influencing Nurses' Communication Style Through a

Two Day Interactive Communication Skills Course. BMJ Support Palliat Care 2014;4:A36

doi:10.1136/bmjspcare-2014-000654.101.

42

KITCHEN, R. PATEL, R. FRENCH, G. FAULL, C. (2014) How Do Surgeons and Anaesthetists Make

Decisions About Surgery for Patients who are Frail, and What Factors Influence These Decisions?

BMJ Support Palliat Care 2014;4:A37-A38 doi:10.1136/bmjspcare-2014-000654.104

FAULL, C. PHELPS, K. REGEN, E. ROWE-HAYNES, C. OLIVER, D. MCDERMOTT, C. (2014) Withdrawal

of Ventilation at the Patient's Request in MND: Doctors Views on the Ethical Challenges Involved.

BMJ Support Palliat Care 2014;4:A39 doi:10.1136/bmjspcare-2014-000654.108.

PICKARD, J. FEATHERS, L. (2014) Putting Research into Practice: Making a Difference to Care. BMJ

Support Palliat Care 2014;4:A64 doi:10.1136/bmjspcare-2014-000654.182

CLIPSHAM, L. PICKARD, J. (2014) Use of a Task and Finish Group to Improve Children's Support

Before the Death of a Parent. BMJ Support Palliat Care 2014;4:A88 doi:10.1136/bmjspcare-2014-

000654.254.

GEORGE, M. SHARMA, A. POWELL, B. BRONNERT, R. (2014) Meeting Palliative Care Needs at the

End of Life in Patients with Interstitial Lung Disease. BMJ Support Palliat Care 2014;4:A90

doi:10.1136/bmjspcare-2014-000654.258.

FEATHERS, L. DECAESTECKER, S. NORRIE, P. FOWLER, J. FAULL, C. (2014) Developing Skills in

Communication in End of Life Care: Evaluation of a 3 Day Pilot Course for Core Medical Training.

BMJ Support Palliat Care 2014;4:A38 doi:10.1136/bmjspcare-2014-000654.105.

FAULL, C. FAULKNER, S. KAVANAGH, J. (2014) VALE, Volunteers at Life's End: The LOROS Care

Homes Project. BMJ Support Palliat Care 2014;4:A97 doi:10.1136/bmjspcare-2014-000654.278.

FAULL, C. PRASAD, R. GRIFFITHS, A. PEARSON, W. WONG, R. GRAY, S. J. FEATHERS, L. BROWN, J.

(2014) Transforming End of Life Care Through Clinical Template Design and Training. BMJ Support

Palliat Care 2014;4:A97-A98 doi:10.1136/bmjspcare-2014-000654.280.

GEORGE, M. WILKINS, C. GARNER, I. POWELL, B. (2014) Opioid Conversion Chart: Introduction of a

User-Friendly Version. BMJ Support Palliat Care 2014;4:A104 doi:10.1136/bmjspcare-2014-

000654.299.

POWELL, B. AGRAWAL, S. (2014) Development of a Hospice Referral Pathway for Patients with

Advanced Interstitial Lung Disease. BMJ Support Palliat Care 2014;4:A107-A108

doi:10.1136/bmjspcare-2014-000654.309.

Evaluation Reports

2013

Transforming End of Life Care Project: A baseline audit and evaluation of end of life care for Leicester City Clinical Commissioning Group Carried out by the Centre for the Promotion of Excellence in Palliative Care (CPEP),

43

De Montfort University & Commissioned by Leicester City Clinical Commissioning Group (LCCCG) Professor Jayne Brown, Dr Christina Faull, Dr Adam Griffiths, Alison Seymour November 2013.

VALE Service: Volunteers at Life’s End.

Evaluation of the Pilot of a New LOROS Service in Care Homes Dr Christina Faull. June 2013.

44

Appendix 4

Conference Presence

Table 12: Poster abstracts:

Conference Venue Title

June 2010: 6th

Research Congress of the European Association for Palliative Care

Glasgow Education changed my life.

June 2010: 6th

Research Congress of the European Association for Palliative Care

Glasgow A study of the most important elements in the patient and support worker relationship.

November 2011: International Alliance of ALS/MND Associations – APF

Sydney, Australia The effects of withdrawal of non-invasive ventilation on the professionals involved

March 2012: 9th Palliative Care Congress

The Sage, Gateshead

Knowledge of Organ & Tissue Donation within the Hospice Environment.

Exploring Issues for Doctors Surrounding the Withdrawal of NIV at the Request of Patients with MND

What are the impacts of communication skills in a foundation degree for support workers.

A study of the most important elements in the patient and support worker relationship.

June 2012: 7th

World Research Congress of the EAPC

Trondheim, Norway

Evaluating the Impact of a Foundation Degree in Palliative and Supportive Care: What are the Consequences for the Career and Role of Health and Social Care Support Workers?

The Practical Difficulties of Seeking Patient Feedback as a Formative Part of Education.

Boulders and Flowers: The Perceived Benefits of Seeking Patient Feedback as a Formative Part of Education

December 2012: MNDA Allied Professionals Forum

Chicago Withdrawal of Ventilation at the Request of a Patient with Motor Neurone Disease (MND)

September 2013: NAPCE Conference

Northamptonshire

VALE: Volunteers at Life's End: the LOROS Care Homes Project

Developing skills in communication in end of life care: evaluation of a 3 day pilot course for core medical training

What is the Impact of Training Nurses in Resuscitation Decisions in Advanced Illness?

October 2013: Macmillan Cancer ‘Voices’ Conference

Gatwick Right Care, Right Patient, Right Plan: Individualised Approach to End Of Life Care Through service re-design and training

October 2013: RCGP Annual Conference

Harrogate Transforming end of life care through clinical template design and training

October 2013: Help the Hospices Conference

Bournemouth International Centre

ENTER - Enabling Nurses to Engage in Research: developing a culture of enquiry in clinical environments

45

Providing a Seamless Service: Assistant Practitioners Working Across Hospice & Community Settings: A Pilot Study

VALE: Volunteers at Life's End: the LOROS Care Homes Project

March 2014: 10th

Palliative Care Congress

Harrogate Withdrawal of Ventilation at the patients request in MND: Doctors Views on the Ethical Challenges Involved

Withdrawal of NIV at the patients request in MND: exploration of the issues related to communication

Transforming end of life care through clinical template design and training

VALE, Volunteers at Life's end : The LOROS care homes project

Deciding Right Project: Right Care, Right Plan for the Right Patient

Putting Research into Practice: Making a Difference to Care

Developing skills in communication in end of life care: evaluation of a 3 day pilot course for core medical training

Exploring Hospice Nurses’ Experiences of Identifying Children’s Bereavement Needs Before the Death of a Parent

Use of a Task & finish Group to Improve Children’s Support Before the Death of a Parent

Development of a Hospice Referral Pathway For Patients With Advanced Interstitial Lung Disease

Opioid Conversion Chart: Introduction of a User-Friendly Version

Influencing Nurses’ Communication Style Through a Two-Day Interactive Communication Skills Course

How do doctors make decisions about surgery in frail patients, and what factors influence these decisions?

Table 13: Oral presentations at conferences:

Conference Venue Topic

March 2012: 9th Palliative Care Congress

The Sage, Gateshead

A study of the most important elements in the patient and support worker relationships in Palliative Care

December 2013: 24

th International Symposium

on ALS/MND

Milan Withdrawal of NIV at the Patient’s Request: Exploration of the Issues Related to Communication.

March 2014: 10th

Palliative Care Congress

Harrogate Views of Hospice Staff, Patients and Their Significant Others on Video-Recording Consultations for use in Research and teaching

December 2014: 25

th International Symposium

on ALS/MND

Brussels Withdrawal of ventilation at the request of a patient with MND: exploring experiences of those involved.