The Realities of Driving Innovation

Professor Christina Faull Consultant in Palliative Medicine

& Lead for Research

June 2014

Professor Christina Faull Consultant in Palliative Medicine. LOROS Lead for Research and Medical Lead for Education. Honorary Professor in the De Montfort University and LOROS Centre for Promotion of Excellence in Palliative Care (CPEP)

The LOROS Research Team

Dr Zoebia Islam Senior Research Fellow. Senior Research Fellow Birmingham and Solihull Mental Health Foundation Trust. Honorary Lecturer De Montfort University. Honorary Research Fellow University of Warwick

Professor Jayne Brown Professor of Palliative Care in the De Montfort University and LOROS Centre for Promotion of Excellence in Palliative Care (CPEP) and Honorary Professor at LOROS

Idaliza Garner Research Support & Administrator

The mission statement for LOROS says:

LOROS has a commitment to research in order to improve the

standards and techniques of palliative care.

In 2011 the LOROS Board of Trustees supported the expansion

of research at the hospice through a change in the job plan of

Professor Faull and a separately identified budget.

A Strategy was developed, highlighting the vision for

Education & Research at LOROS, from 2012 – 2015.

Support for the Development of Research at LOROS

Goal 1: Clinical services will be integrated with education and research services

Goal 2:

All staff will be supported in their personal development Goal 3:

LOROS will provide education programmes that are innovative and relevant and influence practice to achieve better outcomes for patients and their families

Goal 4: 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.

Goals of the Education & Research Strategy

Growth and development of research will be seen in the following ways:

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.

Goal 4: The Research Strategy

January 2011: SLA with University Hospitals of Leicester for RM&G March 2011: Formation of the LOROS Research Committee, to support LOROS in developing its research capacity and in increasing research output, whilst assuring the governance of research undertaken with patients, carers, staff or volunteers April 2011: The LOROS Board of Trustees agreed the first discrete research budget for non-pay expenditure for the 2011/12 financial year (salaries were included from 2012/13) November 2011: Formation of the Education & Research Committee, chaired by Professor John Feehally, LOROS Trustee, to oversee implementation of the Education & Research Strategy September 2012: Appointment of a designated administrator, to support research administration and oversee governance processes February 2013: Appointment of a Senior Research Fellow January 2014: Designated office space set aside for the research team and associate (external) researchers May 2014: Submission of first major National grant application as lead applicants

Milestones for the Department

Our Four Strands of Work

• Defining what research we want to do and what difference it will make

• Developing programmes of research, including linking with external researchers

• Developing staff and the culture of the organisation o openness to research activity and researchers coming to LOROS o willingness to participate in research themselves o facilitation of research participation of patient and carers o skills, confidence and support to undertake research projects

• Using the findings to influence practice

1. Innovation in Palliative Care Services

2. Diversity & Disadvantage

3. Education, Including Communication Skills

4. Lymphoedema

5. End of Life Decision Making & Advance Care Planning

The Five LOROS Research Themes

The Levels of Progress

LOROS Progress Against The Levels

Level 1

Awareness of Research

Website Pages Devoted to Research & Innovation

Innovative Research Newsletter

• Evidence Based Practice Module for the Foundation degree

• Cup O’ Learning & A Slice O’ Cake lunchtime learning sessions

• Good Clinical Practice sessions

• Consent Training

• Academic Research Days

• Study Days

• Presentation of Findings

Research & Education

Listening to What Our Staff Say

Staff Survey seeking views on things such as:

• What could help to support them to become more research active

• What could help them to better understand the importance of a research culture at LOROS

• What barriers currently exist

Listening to What Our Staff Say

Almost half of all staff completed the questionnaire, and all were in agreement that it is important for LOROS to be actively involved in research.

As one individual stated:

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

An action plan is now being developed in conjunction with the LOROS Research Committee to look at how recommendations from the questionnaire can be taken forward. You said we did

Evidence Based Care & Services Findings currently shared in a number of ways:

• Multi-Disciplinary Team

• LOROS Clinical Governance Team

• Research Posters /Newsletter /Noticeboards

• Formal events to allow presentation of study findings

CPD/conference learning :PCC impacts:

• Breathlessness: LOROS is considering how it can promote and teach nurses, Ots and physios about their role in the management of breathlessness

• “Mindfulness”: stimulated several members of the team to read around this and get some training

• Decision Making Theory: training session with our community nurse specialist team

• Opening the Spiritual Gate: Use resources developed in the North West

• Role of volunteers to support the inpatient setting, and the different training available to develop this at LOROS

Level 2

Engagement in Research Activities Generated by Others

Collaborative Working

• Funding for 2 Patient and Public Involvement Groups

• Contribution from the LOROS Patient & Carer

Participation Group

• Patients/Carers Consultations for VERDIS Study • Lay Representatives at key meetings; including

the NIV withdrawal project, CPEP Operational Group, ImPaCT project and VERDIS study

• Posters on display at the hospice, to enable

patients/carers to share in research findings • Work underway to develop patient leaflets

about research

Patient & Family Engagement in Research

Research Governance at LOROS • University Hospitals of Leicester provision of a research

management and governance service

• Designated staff to ensure adherence to governance processes

• A LOROS Research Committee, with representatives from key departments within the hospice, meet every 3 months to discuss new and current research activity and to assure the governance of research undertaken with patients, carers, staff or volunteers

• Research activity monitored by LOROS Board of Trustees regularly

• A Research Policy is in place to guide research activity at LOROS

Our Governance Structures Education & Research Committee

Purpose: To support achievement of the vision for LOROS as a centre of excellence in training, education and research by overseeing implementation of the overall strategy agreed in principle by the Board in March 2011.

Membership:

LOROS Trustee, Professor John Feehally (Chair)

Director of Education & Training

Medical Lead for Education & Research LOROS

Trustee (Non-Clinical)

Director of Care Services

Trustee (Clinical)

LOROS Chief Executive

Medical Lead for LOROS

LOROS Research Committee

Purpose: To enable LOROS to develop its research capacity and increase research output. To assure the governance of research undertaken with patients, carers, staff or volunteers.

Membership:

Consultant Research Lead (Chair)

Lead Consultant

Specialty Registrar

Director of Care Services

Education Lead

Finance Manager

Research & Development Manager UHL

Head of Inpatient Services

Director of Education and Training

Jayne Brown, Professor of Palliative Care, De

Montfort University

Up to 3 LOROS staff with Masters or PhD Research

Degrees

Level 3

Generating & Leading Research

Current Projects

• Withdrawal of Non-invasive Ventilation in Patients with MND

• How do nurses working within an inpatient adult palliative care unit identify children, aged 18 years and under, in need of additional support when they have a parent who is expected to die?

• VerDIs: Video analysis of patient doctor consultations

• Knowledge Transfer Partnership: Pathway for Community management of chronic (Lymph)oedema

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

• Decision making for frail patients who have surgical problems

Completed Projects

• ImPaCT Project: Five Year Evaluation of the Foundation degree in Health & social Care (Palliative & Supportive Care): Lead

• Feedback to support workers on the foundation degree: Lead

• Bone Bank Tissue Donation: Site

• Organ Donation: Lead

• Sedation Research: Site

• Excellence in Practice: a comparison of hospice nurses' perspectives of care of the dying patient in the UK and North America: Site

• Sheets for patients and Clostridium difficile : Site

Developing the Confidence & Skills of Researchers

• Mentoring

• Support to navigate approval and governance processes

• Investment in staff training and conference attendance

• Designated office space for visiting researchers, with access to IT and research software, such as NVIVO

• Strong links with the University Hospitals of Leicester library, offering support to access journals and relevant articles

• Accessible and user-friendly library services at LOROS

• A dedicated Education Department at LOROS, on hand to offer advice on funding, course and career progression for those seeking to undertake higher degrees or specialist professional training

• to

The DMU & LOROS Centre for the Promotion of Excellence in Palliative Care (CPEP)

Launched at the House of Commons in March 2012

CPEP’s mission is to integrate listening to and learning from patients and their carers, within education programmes and research activity.

CPEP aims to transform the care of patients by informing the practice of professionals.

The DMU & LOROS Centre for the Promotion of Excellence in Palliative Care

May 2012 Jayne Brown started as Professor of Palliative Care

January 2013 a Macmillan Clinical Academic Nurse Researcher appointed to the UHL palliative care service and CPEP

Autumn 2013, CPEP welcomed it’s first PhD student

The East Midlands Healthcare Workforce Deanery funded a 2-year medical education fellowship and Dr Richard Kitchen is now undertaking a MEd; his research focuses on decision making by surgeons and anaesthetists for frail patients

Summer 2013 the Leicester City Clinical Commissioning Group (CCG) commissioned with Macmillan support a programme for improvement in the end of life care provided for their patients. 4 GP’s have are mentors to practices in their locality

CPEP secured a bid to Leicester City CCG to provide a baseline evaluation of end of life care in primary care, funding from which also allowed recruitment of two part-time researchers

CPEP evaluated a project, funded by the Healthcare Workforce Deanery, for LOROS to work with Leicestershire Partnership Trust to pilot Trainee Assistant Practitioners

The ‘ENTER’ project (Enabling Nurses to Engage in Research) empowered senior nursing staff to confidently guide their teams on research processes in order to maintain a long-term philosophy of enquiry within their individual healthcare settings

National & International Conference Presence

• 23rd International Symposium on ALS/MND, in Chicago in December 2012

• 9th National Association of Palliative Care Educators Conference, in August 2013

• 2013 Help the Hospices Conference, in Bournemouth

• 24th International Symposium on ALS/MND, in Milan in December 2013

• March 2014 Palliative Care Congress, in Harrogate

• CPEP Palliative Care Research Conference, at De Montfort University, March 2014

Research at LOROS

We are happy for you to contact us:

research@loros.co.uk 0116 231 8498

www.loros.co.uk