Conference guide
#HUKConf19 Specialise in hospice leadership and management cass.city.ac.uk/cce
MSc in Voluntary Sector Management The Centre for Charity Effectiveness at Cass Business School (Cass CCE) [email protected]
2 | Dying for Change: Evolution and Revolution in Palliative Care Contents
4 27 Welcome Session descriptions 5 37 General information Profiles of plenary speakers 9 40 Conference events and meetings Posters 13 41 Sponsors and exhibitors Exhibitor directory 14 46 Floor plans Acknowledgements 16 Programme www.hospiceuk.org We will be 020 7520 8200 Tweeting throughout @hospiceuk the conference using @hospiceukPA #HUKConf19 /hospiceuk Please use this hashtag in all your Tweets Hospice UK about the event. Hospice House 34 – 44 Britannia Street London WC1X 9JG
©Hospice UK 2019. Company Limited by Guarantee, Registered in England and Wales No. 2751549, Charity registered in England and Wales No. 1014851 and in Scotland No. SC041112. VAT No 731 304476.
www.hospiceuk.org/conference | 3 Welcome
Welcome to the ACC Liverpool for our flagship national conference – Dying for Change: Evolution and Revolution in Palliative Care.
We know hospices are facing challenging times, with pressure on costs, a difficult fundraising environment and increasing demand. We simply cannot afford to stand still. The conference theme is therefore intentionally bold and dynamic, with a programme geared towards supporting you to meet these challenges.
Over the next three days you will be kept abreast of all aspects of running a hospice and delivering care, with sessions covering overseeing organisational change, the latest clinical developments and new models of care, as well as fresh ideas for income generation and workforce planning, to name just a few. You will also have the opportunity to hear about what is happening in the wider healthcare community.
I am sure you will also be looking forward to catching up with colleagues from other hospices, toasting the winners of our Hospice UK Awards at our conference dinner, meeting our rich array of exhibitors, and participating in the exciting new aspects of conference including the ‘shedful’ of ideas and the Camper Van of Dreams.
Hospice care is at a crossroads right now, and we need to change and adapt in order to make sure we are fit for the future. But we cannot do this alone.That is why events like this conference are so vital, and we are delighted that you have joined us to deconstruct what we do, look to where we are headed, and devise a bold new strategy to meet the challenges we face.
Tracey Bleakley Chief Executive Hospice UK
4 | Dying for Change: Evolution and Revolution in Palliative Care General information
ACC Liverpool Accreditation Hospice UK is delighted to be holding our We have applied for 15 Clinical External national conference at ACC Liverpool. See Credits. If you require a Certificate of pages 14 and 15 for plans of the areas we Attendance, please ask at the registration desk. will be using. Assisted listening Galleria (ground floor) An infra-red system is installed across all of the auditorium spaces and breakout rooms. Two Registration desk, cloakroom/left luggage, types of receivers are available from the Guest coffee shop, business centre and guest Relations desk – one to make use of delegates’ relations. Tele-coil hearing aid if they have one, and one that is suitable for those without, or those who Lower level simply require increased volume. Lower Galleria: Bookstore, Camper Van Badges of Dreams For security purposes, participants are asked Exhibition, posters, catering Hall 2: to wear their badges at all times while on and refreshments the conference site. Anyone not wearing a badge may be stopped and refused entry to Upper level the conference. Should you lose your badge please come to the registration desk. Conference sessions: Main auditorium (Hall 1A), Hall 1C; rooms 3, 4 and 11 Conference registration is only valid for the person in whose name it has been made Speaker preview: Room 6 and multiple-day tickets cannot be shared amongst several people. This is for security Opening times purposes and because it creates logistical difficulties in our: issuing CPD certificates Tuesday 19 November 16:00 – 20:00 which are linked to individuals’ attendance at conference; meeting attendees’ specific Wednesday 20 November 08:30 – 19:30 dietary requirements; ensuring that we have Thursday 21 November 08:00 – 17:30 the correct number of conference packs and printed programmes. Friday 22 November 08:00 – 17:00
www.hospiceuk.org/conference | 5 General information (continued)
Business centre Cloakroom and left luggage Located in the Galleria, the business centre A free, staffed cloakroom and left luggage offers a range of services, for which there is store is available in the Galleria at the following a charge, including printing up to A0; faxing, times: scanning and laminating; courier services; Wednesday 20 November 08:30 – 20:00 foreign exchange. Thursday 21 November 08:00 – 17:15 Cash Machine Friday 22 November 08:30 – 15:45 ACC operates a cash back facility at Guest No responsibility will be accepted by the relations. The cost is £1 for this service. ACC management, Hospice UK or their staff Alternatively the nearest cash machine is in and agents for any property lost, damaged Albert Dock. or stolen. Catering Delegates are advised that cases and bags left in the cloakroom should be locked, as no Refreshments will be available during official responsibility can be accepted for individual breaks. Lunch will be served in the exhibition items found to be missing from such baggage. hall on each day of the conference. (The size This will also apply to property left on or in the of the hall does not allow for seating for all pockets of coats etc. delegates but our intention is that delegates will also take advantage of breaks to visit the Discount cards exhibition and posters.) Discount cards for use in a range of local If you have specific dietary requirements which restaurants and attractions are available from have not been met, please speak to one of registration. ACC’s ‘Allergy Champions’, recognisable by their green aprons, who will be able to advise and assist you. Emergency procedures In the event of an emergency, an When the conference is open, delegates can announcement will be made asking delegates, buy refreshments outside official break times exhibitors and organisers to leave the building from the coffee shop in the Galleria, which will by the nearest available exit. The muster be open at the following times: point is on the piazza outside the Jury’s Inn. Wednesday 20 November 08:45 – 17:30 Delegates with access requirements will be guided to the nearest refuge point by a Thursday 21 November 07:45 – 17:30 venue steward, where they will receive further Friday 22 November 08:15 – 16:00 assistance. No one is to return to the building until official announcements have been made by ACC Liverpool.
6 | Dying for Change: Evolution and Revolution in Palliative Care Exhibition Mobile phones and pagers The exhibition is located in Hall 2 and will be As a courtesy to speakers and other delegates, open throughout conference. (See page 14 for we ask that all mobile phones and pagers a plan of the exhibition.) Don’t forget to enter are switched to silent during all conference the prize draw, and to follow the Liver Bird sessions. Trail during the dedicated Exhibitor Hour on Thursday 21 November (14:45 – 15:45). Mobility All areas of ACC Liverpool are accessible. If Feedback you require any assistance, please let the staff We welcome your feedback to help inform know at the registration desk. the format and content of future conferences. We will be sending delegates an electronic Parallel sessions feedback form immediately after conference. Rooms for all sessions are of a good capacity Completed entries will be entered into a prize and we do not anticipate any difficulties in draw. delegates being able to attend the sessions of their choice. The exception to this is the First aid Revolution Workshop (13:30 – 16:45 on If anyone requires first aid, please contact an Wednesday 20 November) for which people ACC Steward – recognisable by their black have registered in advance. Access will be jackets and blue ties – who will be able to on a purely first-come, first-served basis and assist. access may be denied if rooms become full.
Guest relations Photography and filming ACC’s Guest Relations team is located in the We have commissioned a photographer to Galleria and can help with restaurant bookings, take pictures during conference. These are for transport needs, supplying prayer mats or promotional purposes and images may appear assistance with tours to Liverpool’s attractions. in future leaflets, flyers and on websites. We will also be filming some session, which will be Lost property available on our YouTube channel. Please visit the registration desk for any matters relating to lost property.
www.hospiceuk.org/conference | 7 General information (continued)
Poster presentations Speaker preview Posters are on display throughout the Speaker preview is located in Room 7 on the conference in the exhibition hall. Posters will upper level. remain in place throughout the conference If you are speaking at the conference but will allowing delegates the opportunity to view them not be using PowerPoint or any other form of at any time. We have asked that at least one electronic presentation, you should still visit author of each poster is available to answer speaker preview so that you can advise the questions and discuss their content during the technicians in your session accordingly and refreshment and lunch breaks. so they can confirm any other requirements with you. Press If you are speaking during a morning session, Any press enquiries should be passed to your presentation should be with speaker Suzanne Stevenson via the registration desk. preview the day before you are speaking. If this is not possible, please ensure it is handed to Recycling speaker preview at least two hours before the start of the session. Recycling bins have been provided within the If you are speaking during an afternoon conference venue and we ask you to make use session, your presentation should be with of the facilities wherever possible. speaker preview by lunchtime – or a minimum of two hours before the start of the session Registration whichever is the earlier. The main registration desk will be staffed throughout each day and is located in the Taxis Galleria. Please visit the desk if you have any Taxis can be ordered from Guest Relations in general enquiries or lost property. the Galleria. Smoking Wifi Smoking is not allowed in ACC Liverpool nor is To access free Wifi, please use the following the use of e-cigarettes. If you wish to smoke, instructions: please make your way to the Riverside Exit of the Galleria where there is a dedicated • Go to your internet settings and select the smoking area. network option FREE_WIFI • This will take you to ACC Liverpool’s landing page. • Click the ‘Free Wi-Fi Access’ button.
You should now be connected to the internet.
8 | Dying for Change: Evolution and Revolution in Palliative Care Conference events and meetings
Throughout conference the van and, with individuals’ permission, are transmitted via a rooftop megaphone or Meet Hospice UK tweeted to create a stream of hope. The Camper Van of Dreams is based on Join Hospice UK staff and associates at the theory that by declaring an aspiration it stand 17 to: becomes a possibility. Over 4,500 participants • discuss programmes of work and areas of have entered the van dreaming of justice, interest innovation, love, forgiveness and connection. It • learn more about Project ECHO is a creative space for re-imaging – individually or collectively – to declare what really matters. • find out about Hospice UK’s People in Partnership forum which brings the voice At Hospice UK’s national conference, we’re of those with personal experience into the inviting people to share their dreams for heart of the work of Hospice UK and Dying revolutionising end of life care. Matters • meet members of the Forum of Hospice A ‘shedful’ of ideas Chairmen. The conference is jam packed with innovation Bookstore and ideas. Many of these form the content of conference sessions or as displayed posters, Bookmark, a specialist bookseller which but what about the ideas that aren’t part of the provides titles on palliative and end of life care formal programme or which occur to people to hospices and individuals, will be in the area while at conference? This is where the ‘shed’ adjacent to the exhibition hall with a display of comes in. new and bestselling titles offered at specially reduced prices. Purchases can be made by During conference, the shed will be a meeting card or by invoicing your organisation, as place for delegates to share information, required. request help or to look for likeminded individuals to help develop, shape and share Camper Van of Dreams ideas that will enable end of life care to flourish. The Camper Van of Dreams is a place of The concept is simple: come to the shed, write imagination, a creative space for people to find your idea and contact details on a card and the courage to speak their dreams. The van is pin it up on the wall. During conference other an initiative of hope, an interactive space for visitors to the shed will browse the cards, and shared stories. be able to add their own ideas and take your contact details to get in touch during or after Since 2014, the van has been at schools, conference. We hope that this simple method colleges, festivals and conferences will broker introductions to other likeminded encouraging people to enter the van and people who delegates may not meet in any articulate a dream. The dreams are spoken other way. into a microphone within the safe space of
www.hospiceuk.org/conference | 9 Conference events and meetings (continued)
Wednesday 20 November
Hospice Quality Partnership AGM Early evening event Room 4 (09:30 – 10:00) Drinks reception sponsored by Vantage Technologies Lunchtime events Exhibition Hall (18:00 – 19:30)
Writing for Publication Hospice UK and Vantage Technologies Hall 1C (12:40 – 13:25) would like to invite you to a drinks reception. Introducing … The Cicely Everyone is welcome to join us for a relaxing glass of wine after a busy first day Saunders Society of conference. This will give you a great Room 3 (12:40 – 13:25) opportunity to chat with all the exhibitors and catch up with your colleagues.
V A N T A G E TECHNOLOGIES www.vantage-technologies.co.uk Data Management Software for your Hospice or Charity!
Software Modules. Phone.
Asset Management & Maintenance Health & Safety 0114 247 9500 Audit and Inspection Incident Management Complaints and Compliments Policy Management Email. Contract Management Risk Management [email protected] Contract Staff Lists Safeguarding CQC Compliance Management Safety Alerts File Store Service Access Request Facilities Management & Maintenance Training Management COME AND SEE US AT GDPR (Register of Process Activity) Vehicle Management Helpdesk/Support Web Forms STAND 25 10 | Dying for Change: Evolution and Revolution in Palliative Care Hospice and Charity Specialist Auditors and Advisors We are one of the largest auditors to hospices in the UK. The number of hospice and care charity clients and our wide sector experience mean we have dealt with many of the issues you face and are able to provide you with accurate and pragmatic advice.
Come and see us at Stand 16 and get your free copy of this year’s Hospice Accounts Report.
Anna Bennett Siobhan Holmes Charities Partner Senior Manager T 020 7969 5542 T 020 7969 5601 E [email protected] E [email protected]
www.haysmacintyre.com @haysmacintyre haysmacintyre
Thursday 21 November
Lunchtime event Research café Room 11 (12:40 – 13:25)
Exhibitor Hour, poster viewing and Liver Bird Trail Exhibition Hall (14:45 – 15:45)
Head to the Exhibition Hall so you don’t miss out on the wonderful opportunity to spend a dedicated hour networking with our lovely exhibitors! This is also your chance to win some fantastic prizes by taking part in the Liver Bird Trail!
www.hospiceuk.org/conference | 11 Conference dinner, Hospice UK Awards sponsored by Towergate During dinner, we will be making Insurance (Room 3 at ACC) presentations to winners of the Hospice UK Awards, supported by the National Garden Pre-dinner drinks are available at a cash Scheme. bar, from 19:00 onwards, and dinner will be served promptly at 19:30. The dinner is The Innovation Awards are made in four only for those who booked in advance. categories – Care, Income Generation, You should bring your conference Partnership Working, and Tackling badge with you as this doubles as your Inequalities. Awards are also made to the dinner ticket. Towergate Hospice Team of the Year and to a Dying Matters initiative. We regret that we cannot take any more bookings for the dinner unless any We also recognise the special contribution tickets have been returned. to hospice care made by individuals in the following categories: Volunteer of the Year Subject to availability, returned dinner and Volunteer Gardener of the Year. tickets will be re-sold at the registration desk and payment will be required at In 2019, the categories of Awards were the time of purchase. Invoices cannot be extended to include The Michael Howard issued for any dinner tickets purchased Award and the Dementia Care at Home at the registration desk but a handwritten Award supported by Hope for Home. receipt will be provided.
STABILITY AND EXPERIENCE YOU CAN TRUST
We insure over 100 of the UK’s independently owned hospices and have been working in this sector for over 25 years. Our policy includes several key benefits such as:
l Volunteer and fundraising protection l Medical Malpractice Liability l Charity Trustees Liability
We’re proud to partner with Hospice UK, working closely with them to understand the intricacies of the sector and continually develop products to better assist hospices. Our passion is bolstered by the support and encouragement of The Ardonagh Group and our registered group charity, Ardonagh Community Trust (ACT). The trust supports our employees in helping causes important to them and since its launch ACT has supported 44 community and charity projects with over £150,000 of funding. For more information on how we can help you manage risk or to find out more about the projects that Ardonagh Community Trust has supported please visit us on Stand 23.
Call us on: 0330 123 5173 Visit us at: www.towergateinsurance.co.uk /hospice-insurance
All cover subject to insurers underwriting criteria
Towergate Insurance is a trading name of Towergate Underwriting Group Limited. Registered in England No.4043759. 12Registered | Dying address: for 1 Minster Change: Court, Mincing Evolution Lane, London andEC3R 7AA. Revolution Authorised and regulatedin Palliative by the Financial Care Conduct Authority.
1073NS011019 - CAR000104 TIB Hospice UK Conference Advert.indd 1 03/10/2019 13:48 Sponsors and exhibitors
Stand Exhibitor Stand Exhibitor No. No. 2 Acopia Limited 11 Lisclare 42 Arjo UK Ltd 5 Marie Curie 43 Ashtons Hospital Pharmacy Services 24 National Garden Scheme 41 Association of Chartered 14 Oralieve / Stockdale Martin Physiotherapists in Oncology and 13 OSKA Palliative Care 37 Pharmaceutical Press 8 Association of Hospice and Palliative Care Chaplains (AHPCC) 19b Pure Cremation 6 Association for Palliative Medicine of 7 Real Talk / Loughborough University Great Britain and Ireland and e-ELCA 32 Relias Learning 34 Blue Stream Academy 1 RLDatix 14b BPR Medical Limited 15 Skyline Business Services 18 Care Database 44 SMI Care 4 Choice Textiles Ltd. 36 SORT UK 31 CIPHR Ltd. 9 St Helena – My Care Choices and 22 D E Ford Insurance Brokers, PIB Atlas of Value Risk Management & PIB Employee 39 The Open University Sexuality Benefits Alliance 27 EMIS Health 38 Together for Short Lives 28 Establishment Genie 23 Towergate Insurance 26 Guldmann 40 University of Liverpool Management 16 Haysmacintyre LLP School, Trajectory Touchpoint Technique 20 Hospice Quality Partnership 25 Vantage Technologies 17 Hospice UK 19 Wil-U / PxTech 33 Immersive Technologies 29 Wissner-bosserhoff / LINET UK 12 KKE Architects 21 Your Hospice Lottery 10 Kudos Software 3 Lloyds Pharmacy 30 Local Hospice Lottery
www.hospiceuk.org/conference | 13 Floor plans
Lower level Exhibition Hall and Lower Galleria
Shed 7 8 39 40 6 9 38 41 Posters Posters 5 10 17 25 26 37 42
4 11 16 24 27 36 43 44 3 12 15 18 23 28
32 29
14b 19b 31 30 34
Posters 2 Posters 14 19 21 22 1 13 20 33
Entrance Lift Lift Stairs
Camper Van of Dreams
Escalator Toilets Bookstore Key: Seating Food and areas drinks
14 | Dying for Change: Evolution and Revolution in Palliative Care Upper level
Toilets Toilets
Main auditorium
Hall 1a Stairs Lift Lift Stairs
14 Hall Hall 1b 1c 13 3b
11 10 7 3 12 9 6 4
8 5
16 15 Stairs Stairs Escalator
Rooms in use balcony
Rooms not in use Riverside
www.hospiceuk.org/conference | 15 Programme Wednesday 20 November 2019
08:30 onwards Registration and exhibition opens
10:45 – 11:15 Official opening Hall 1A Tracey Bleakley, Chief Executive, Hospice UK
11:15 – 12:00 Plenary 1 Hall 1A Palliative care, the media and me! Dr Mark Taubert, Clinical Director, Consultant Physician and Honorary Senior Lecturer in Palliative Medicine, School of Medicine, Cardiff University Chair: Tracey Bleakley, Chief Executive, Hospice UK
12:00 – 13:30 Lunch, exhibition and poster viewing, and lunchtime sessions (LS)
12:40 – 13:25 Writing for publication (LS) Hall 1C Clare Partridge, Deputy Editor, BMJ Open Chair: Professor Kate Flemming, Department of Health Sciences, University of York; Head of Research and Clinical Innovation, Hospice UK
12:40 – 13:25 Introducing … The Cicely Saunders Society (LS) Room 3 Professor David Clark OBE, Wellcome Trust Investigator, University of Glasgow; Vice President, Hospice UK Chair: Melanie Hodson, Head of Information Support, Hospice UK
13:30 – 14:45 Parallel sessions 1
1.1 Conference papers: Delivering care to community Room 4 groups (abstracts selected via the Call for Papers)
Life’s hard and then you die: PhD exploring end of life priorities within the UK homeless population Wendy Ann Webb, PhD Student, University of Worcester
Dying as a homeless person: how can we help? Dr Barbara Sheehy-Skeffington, Consultant in Palliative Medicine, Royal Trinity Hospice
16 | Dying for Change: Evolution and Revolution in Palliative Care Hospice counselling team community network Tracy Tuffs, Counselling Service Team Lead, St Barnabas Hospice, Lincoln
Chair: Libby Milton, Lead Nurse, Marie Curie Hospice Edinburgh and West Lothian
1.2 Thinking ahead and looking back Hall 1A James Norris, Founder, My Wishes; Barbara Altounyan, Chief Executive and Founder, Hospice Biographers; John Greenwood, Hospice Biographer Chair: Suzanne Stevenson, Head of Media and PR, Hospice UK
1.3 Developing and equipping our workforce for the future Room 3 Professor Caroline Nicholson, Professor of Palliative Care and Ageing, University of Surrey; Dr Gill Horne, Director of Patient Care, Rowcroft Hospice; Dr Diane Laverty, Macmillan Nurse Consultant Palliative and End of Life Care, London Ambulance Service NHS Trust; Dr Liz Forbat, Associate Professor, Faculty of Social Sciences, University of Stirling Chair: Anita Hayes, Head of Learning and Workforce and Lesley Goodburn, Chair, People in Partnership Forum, Hospice UK
1.4 New therapeutics: an update Hall 1C Professor Tony O’Brien, Consultant Physician in Palliative Medicine, Marymount University Hospital and Hospice; Dr Ros Taylor MBE, Clinical Associate, Hospice UK; Medical Director, St Giles Hospice Care; Lancet Value of Death Commission Chair: Dr Mike Miller, Medical Director, Martin House (retired); Trustee, Naomi House and Jacksplace; and Trustee, Hospice UK
13:30 – 16:45 Revolution workshop Room 11 (The workshop runs concurrently with parallel sessions 1 and 2. Attendance is for people who pre-booked.) Jake Garber, Worldwide International Global Solutions
14:45 – 15:30 Refreshments, exhibition and poster viewing
15:30 – 16:45 Parallel sessions 2
2.1 Conference papers: Informing service development Room 4 (abstracts selected via the Call for Papers)
Findings from the first round of the National Audit of Care at the End of Life (NACEL) Dr Elizabeth Rees, NACEL Co-Clinical Lead/Lead Nurse for End of Life Care, Leeds Teaching Hospitals NHS Trust
www.hospiceuk.org/conference | 17 Wednesday 20 November 2019 (Continued)
Creating a community of outstanding practice: We’re still standing better than we’ve ever been Linda Prendergast, Education and Learning Facilitator and Louise Pickford, Education and Learning Facilitator, Mountbatten Hospice
Preparing the way: evaluating support for children before the death of a parent or sibling Alison Penny, Director, Childhood Bereavement Network
The donor experience: value creation and the role of the donor in supporter-led fundraising Katie Mitchell, Head of Fundraising, John Taylor Hospice
Chair: Carrie James, ECHO Transitions Project Manager, Hospice UK
2.2 Is your culture eating your organisation for breakfast? Room 3 Sarah Pugh, Chief Executive, Heart of Kent Hospice; David Robinson, Chief Executive, Derian House Children’s Hospice Chair: Elizabeth Palfreman, Head of Hospice Support, Hospice UK
2.3 Primary Palliative Care – where the action is! Hall 1C Dr Sarah Mitchell, GP and NIHR Doctoral Research Fellow, Warwick Medical School and Macmillan GP and Clinical Lead for Children and Young People, Sheffield CCG;Dr Diane Laverty, Macmillan Nurse Consultant Palliative and End of Life Care, London Ambulance Service NHS Trust Chair: Carole Walford, Chief Clinical Officer, Hospice UK
2.4 Engaging effectively with people with lived experience Hall 1A Lesley Goodburn, Chair, People in Partnership Forum, Hospice UK and Senior Improvement Manager Patient Experience, NHS Improvement and NHS England; Joanna Goodrich, Associate, Point of Care Foundation; Joe Potts, Clinical Project Manager and Kevin Chesters, Social Worker, Douglas Macmillan Hospice; Dr Clare Smith, Palliative Care Consultant, Princess Alice Hospice Chair: Ian Leech, Community Engagement and Supportive Care Manager, St Giles Hospice Care
16:45 – 17:00 Break to move rooms
18 | Dying for Change: Evolution and Revolution in Palliative Care 17:00 – 18:00 Plenary 2 Hall 1A Too much, too late. Data, drugs and dying Lucas Morin, Aging Research Centre, Karolinska Institutet, Stockholm Chair: Dr Ros Taylor MBE, Clinical Associate, Hospice UK; Medical Director, St Giles Hospice Care; Lancet Value of Death Commission
18:00 – 19:30 Drinks reception and exhibition viewing (all welcome) Exhibition Hall
Thursday 21 November 2019
08:00 onwards Registration and exhibition opens
09:00 – 10:00 Plenary 3 Hall 1A Vision for nursing Ruth May, Chief Nursing Officer for England Chair: Carole Walford, Chief Clinical Officer, Hospice UK
10:00 – 10:45 Refreshments, exhibition and poster viewing
10:45 – 12:00 Parallel sessions 3
3.1 Conference papers: Symptom management and Room 4 treatment (abstracts selected via the Call for Papers)
Improved outcomes with a centralised metastatic spinal cord compression coordinator service Lena Richards, MSCC Coordinator/Educator, The Christie NHS Foundation Trust
Deactivation of cardiac defibrillators at end of life: Integrated working is essential Joy Ross, Consultant in Palliative Medicine, St Christopher’s
Use of subcutaneous furosemide in the community setting in end stage heart failure Joy Ross, Consultant in Palliative Medicine, St Christopher’s
The CARIAD study Dr Marlise Poolman, Clinical Senior Lecturer in Palliative Medicine, Bangor University
Chair: Dr Fiona Rawlinson, Reader, School of Medicine, Cardiff University
www.hospiceuk.org/conference | 19 Thursday 21 November 2019 (Continued)
3.2 Getting started with large-scale change: an introduction Room 11 Elaine Bayliss, Senior Improvement Manager and Co-Lead Virtual Academy of Large Scale Change, Improvement Directorate, NHS England and NHS Improvement; Dr Iain Smith, Programme Lead for Improvement Methodology, Sustainable Improvement Team, NHS England; Dr Liz Bryan, Education Consultant, St Christopher’s Chair: Anita Hayes, Head of Learning and Workforce, Hospice UK
3.3 Strategic alliances: the only way demand for end of life Hall 1C care can be met? Steve Curry, Chief Executive, Harlington Hospice; Wayne de Leeuw, Chief Executive, Dorothy House Hospice Care Chair: Elizabeth Palfreman, Head of Hospice Support, Hospice UK
3.4 Dementia and palliative care – what’s possible? Room 3 Dr Emma Hodges, Group Chief Executive, St Giles Hospice Care; Dr Emily Oliver, Consultant Admiral Nurse South West England and South Wales, Dementia UK; Dr Nathan Davies, Alzheimer’s Society Senior Research Fellow, UCL, University of London Chair: Dr Ros Taylor MBE, Clinical Associate, Hospice UK; Medical Director, St Giles Hospice Care; Lancet Value of Death Commission
3.5 Transition and change – an unexpected generation: Hall 1A supporting our move into adult life and adult services Carrie James, ECHO Transitions Project Manager, Hospice UK; Dr Maddie Blackburn, Chair of The Open University Sexuality Alliance; Dr Sarah Earle, Director, Health and Wellbeing Priority Research Area, The Open University; Lucy Watts MBE, Chair and Leah Booth, Deputy Chair, AdversiTeam; assistance dog Molly Chair: Carole Walford, Chief Clinical Officer, Hospice UK
12:00 – 13:30 Lunch, exhibition and poster viewing, and lunchtime session (LS)
12:40 – 13:25 Research café (LS) Room 11 Professor Kate Flemming, Department of Health Sciences, University of York; Head of Research and Clinical Innovation, Hospice UK; Professor Gunn Grande, Professor of Palliative Care, The University of Manchester; Dr Sally Boa, Head of Palliative Care Education, Research and Practice Development, Strathcarron Hospice
20 | Dying for Change: Evolution and Revolution in Palliative Care 13:30 – 14:45 Parallel sessions 4
4.1 Conference papers: Rehabilitation and addressing Room 4 unmet needs (abstracts selected via the Call for Papers)
Rehabilitative palliative care: research and practice Dr Karen Clarke, Chief Executive and Olivia Beeney-Bennett, Clinical Nurse Specialist, St Michael’s Hospice, Hastings and Rother
An exercise and nutritional rehabilitation (ENeRgy) trial in patients with incurable cancer Dr Charlie Hall, Medical Research Fellow, St Columba’s Hospice
Supporting family carers of people with MND: adaptation of the CSNAT intervention Dr Gail Ewing, Senior Research Associate, University of Cambridge
Legal needs towards end of life: Definition, experience and implications for policy and practice Dr Colette Hawkins, Academic Consultant in Palliative Medicine, St Oswald’s Hospice
Chair: Dr Sally Boa, Head of Palliative Care Education, Research and Practice Development, Strathcarron Hospice
4.2 Workforce modelling and scenario planning for Room 11 the future Dr Amy Proffitt, Deputy Medical Director, St Christopher’s and President Elect, Association for Palliative Medicine; Michael Crowther, Chief Executive, Kirkwood Hospice; Peter Lacey, Director, Whole Systems Partnership Chair: Anita Hayes, Head of Learning and Workforce, Hospice UK
4.3 Long term care and palliative care – what is the interface? Hall 1C Kerry Bareham, Nurse Consultant, St Barnabas Hospice, Lincolnshire; George Coxon, Owner and Director, Pottles Court and Summercourt Care Homes; Tiffany Barron Gutierrez, Dietetic Practitioner, Nightingale House Chair: Dr Ros Taylor MBE, Clinical Associate, Hospice UK; Medical Director, St Giles Hospice Care; Lancet Value of Death Commission
www.hospiceuk.org/conference | 21 Thursday 21 November 2019 (Continued)
4.4 Too much too late? De-escalation of curative Hall 1A treatment – a challenge for all Dr Mike Miller, Medical Director, Martin House (retired), Trustee, Naomi House and Jacksplace and Trustee, Hospice UK; Dr Michelle Koh, Consultant in Paediatric Palliative Medicine, University Hospital Southampton and Naomi House and Jacksplace; Sonya O’Leary, Lead Nurse, Children’s Services, Keech Hospice Care; Dr Jan Aldridge, Consultant Clinical Psychologist, Paediatrics, Leeds Teaching Hospitals and Martin House Children’s Hospice Chair: Liz Searle, Chief Executive, Keech Hospice; Advisory Council Representative (East of England) Hospice UK
4.5 Understanding the impact of hospice care: Room 3 emerging findings from the HOLISTIC study Jonathan Ellis, Director of Policy and Change, Hospice UK. Other speakers to be confirmed. Chair: To be confirmed.
14:45 – 15:45 Exhibitor Hour, poster viewing and Liver Bird Trail Head to the Exhibition Hall now! Don’t miss out on the wonderful opportunity to spend a dedicated hour networking with our lovely exhibitors! This is also your chance to win some fantastic prizes by taking part in the Liver Bird Trail!
15:20 – 15:45 Refreshments
15:45 – 16:45 Plenary 4 Hall 1A Human: solving the workforce crisis in healthcare Mark Britnell, Chairman and Partner, Healthcare, Government and Infrastructure, KPMG Chair: Tracey Bleakley, Chief Executive, Hospice UK
19:00 – 22:30 Drinks followed by conference dinner
22 | Dying for Change: Evolution and Revolution in Palliative Care Friday 22 November 2019
08:30 onwards Registration and exhibition opens
09:00 – 10:15 Parallel sessions 5
5.1 Conference papers: Workforce support and Room 4 development (abstracts selected via the Call for Papers)
Welcoming FREDIE Dallas Pounds, Chief Executive, Royal Trinity Hospice
Staff wellbeing in UK children’s hospices (SWiCH): A mixed-methods study Dr Andrew Papworth, Research Fellow, University of York
Using Project ECHO to deliver palliative care education and support across multiple settings Dr Janet Diffin, Evaluation Fellow, Hospice UK
Recommendations for comprehensive person-centred carer support: UK survey of current provision Dr James Higgerson, Research Associate, University of Manchester
Chair: Linda McEnhill, Chief Executive, Ardgowan Hospice
5.2 Are we really supporting family carers? Room 11 Kirsten Alderson, Chief Executive, Suffolk Family Carers; Professor Gunn Grande, Professor of Palliative Care, The University of Manchester; Professor Philippa Hunter-Jones, Director of Ethics, University of Liverpool Management School Chair: Esther Green, Senior Policy and Advocacy Officer, Hospice UK
5.3 Lions and tigers and bears – financial and strategic Hall 1C risks facing hospices Anna Bennett, Charities Partner, haysmacintyre; Toby Porter, Chief Executive, Acorns Children’s Hospice Chair and contributor: Craig Duncan, Chief Operating Officer, Hospice UK
5.4 Triple value and population healthcare Hall 1A Mark Jarman-Howe, Chief Executive, and Dr Karen Chumbley, Deputy Chief Executive and Medical Director, St Helena; Dr Tim Wilson, Managing Director, Oxford Centre for Triple Value Healthcare Chair: Kathleen Caper, Head of Policy and Advocacy, Hospice UK
www.hospiceuk.org/conference | 23 Friday 22 November 2019 (Continued)
5.5 How can the Dying Matters campaign help your Room 3 hospice and your community? Toby Scott, Head of Communications and Campaigns and Stephanie Owens, Senior Communications Officer, Hospice UK;Diane Parkes, Head of Brand and Media, John Taylor Hospice; Julie Kay, Project Coordinator, WIRRAL Older People’s Parliament Chair: Sarah West, Director of Campaigns and Communications, Hospice UK
10:15 – 11:00 Refreshments, exhibition and poster viewing
11:00 – 11:45 Hospice UK AGM followed directly by Plenary 5 Hall 1A In conversation with Matthew Reed, reflecting on his first year in post and his vision for the future Tracey Bleakley, Chief Executive, Hospice UK; Matthew Reed, Chief Executive, Marie Curie Chair: Christine Gibbons, Deputy Chair, Hospice UK
11:45 – 13:00 Lunch, exhibition and poster viewing
13:00 – 14:00 Parallel sessions 6
6.1 Conference papers: Community engagement Room 4 and collaboration (abstracts selected via the Call for Papers)
How can communities support carers: developing community capacity and capability? Gemma Allen, Diversity and Inclusion Lead, Mary Stevens Hospice; Gina King, NHSE EoL Lead and Hospice UK Associate
Last Aid – Taking a European approach to aid development of Compassionate Communities in Highland Siobhan Neylon, Learning and Development Practice Lead, Highland Hospice
Care improvement and end of life: a partnership approach Emily Pardoe-Billings, Dementia Advisor, St Giles Hospice
Chair: Bridget Moss, Head of Education, St Francis Hospice
24 | Dying for Change: Evolution and Revolution in Palliative Care 6.2 Gypsies and Travellers Hall 1C Sarah Sweeney, Communications and Health Policy Coordinator, and Avril Fuller, Outreach and Youth Coordinator, Friends, Families and Travellers Chair: Melanie Hodson, Head of Information Support, Hospice UK
6.3 Supporting fundraisers to be resilient Hall 1A Hannah Massarella, Founder, Bird Consulting; Claire Warner, Consultant, Trustee of Forget Me Not Children’s Hospice and former hospice fundraiser Chair: Elizabeth Palfreman, Head of Hospice Support, Hospice UK
6.4 Towards a new national data set for hospice care: Room 11 findings of proof of concept Kathleen Caper, Head of Policy and Advocacy and Emily Dobson, Project Manager, National Data Programme, Hospice UK Chair: To be confirmed.
6.5 ‘To err is human’: patient safety in hospice care Room 3 Jane Eades, Associate Director of Quality and Safety, Marie Curie Chair and contributor: Karen Taylor, Director of Clinical Services, Martlets Hospice
14:00 – 14:15 Break to move rooms
14:15 – 15:00 Plenary 6 Hall 1A Dr Margaret Heffernan, Entrepreneur, Chief Executive and Author Chair: Tracey Bleakley, Chief Executive, Hospice UK
15:00 – 15:15 Conference close and drinks to go
www.hospiceuk.org/conference | 25 26 | Dying for Change: Evolution and Revolution in Palliative Care Session descriptions
Wednesday 20 November
Official opening, Chief and scope of the newly established Cicely Saunders Society, which has been formed Executive’s keynote and to promote appreciation and understanding Plenary 1 of the life and work of the founder of the (10:45 – 12:00) modern hospice movement. Reflecting the overall theme of the conference, Plenary 1 David will then go on to examine both the ‘revolutionary’ and the ‘evolutionary’ aspects Palliative care, the media and me! of Dame Cicely’s approach, and to assess Dr Mark Taubert will talk on the theme some of the ways in which her legacy of palliative care and the media – his speaks to our current situation. experience of promoting palliative care via mainstream and social media, the Details of The Cicely Saunders Society can opportunities that storytelling presents, the be found on https://www.stchristophers.org. pitfalls and perhaps how engaging with uk/cicely-saunders-society/ media can support the ‘revolution’ to help Follow the Society on Twitter palliative care be better understood. @CicelySociety He will share how we can use the media bravely to share key messages about Revolution workshop challenging topics such as resuscitation and (13:30 – 16:45) advance care planning. He will also touch on how the arts, theatre and music, are Unlike other sessions at conference, important channels for public messages. which are open to all, this workshop is for people who registered in advance and participants will plan the beginnings of their Lunchtime sessions own revolutionary approach to end of life (12:40 – 13:25) care. Writing for publication The hands-on and practical workshop will Join Clare Partridge, Deputy Editor at BMJ give participants ideas and practices for Open, for advice on getting your research thinking and working differently. It will be into publication. led by Jake Garber, Director of Worldwide International Global Solutions and co-author Introducing … The Cicely Saunders of ‘Dying for Change’. Jake has extensive Society experience of supporting radical innovation In this session, Professor David Clark in a range of sectors, and participants will (University of Glasgow) will outline the aims hear from hospices who are already on their own revolutionary journeys.
www.hospiceuk.org/conference | 27 Parallel sessions 1 overall aim is to ‘optimise the potential and (13:30 – 14:45) contribution of people to deliver high-quality end of life care’. 1.1 Conference papers: Delivering We will be discussing four important topic care to community groups areas that have been highlighted by the This session includes four presentations of sector with a view to: abstracts submitted via our Call for Papers. The abstracts are published in an online • sharing our current thinking and providing conference supplement produced by BMJ examples of good practice Supportive & Palliative Care, an official • highlighting any practical resources that journal of Hospice UK. people can take away 1.2 Thinking ahead and looking back • where possible, beginning to map any James Norris will explore his journey with other good practice identified in the session digital and death! He will explain how he intends to utilise the My Wishes software to • seeking interest from participants make forward planning a part of all our lives. to contribute to ongoing work after James will share how My Wishes is being conference. used as part of a public engagement project There will be short presentations followed in Staffordshire and provide a live demo of by opportunities for discussion in groups. the platform. The topics include: hospice and palliative Barbara Altounyan has founded a charity care career pathways and associated that trains people in how to review the lives training (including the volunteer pathway into of terminally ill patients in a structured way. caring); developing resilience and equipping The discussion is then captured as a legacy staff to care for themselves; developing and for patient and family. She will share the equipping staff to care for older people; new story of how the charity came about and the roles within team working, including nursing scale it is now reaching. John Greenwood associates and the impact of future nurse will give a first hand account of what it feels proficiencies. like to be a Hospice Biographer, the intimacy 1.4 New therapeutics: an update and the drama. The session will look at two critical issues 1.3 Developing and equipping our relevant to therapeutics in palliative care. workforce for the future Dr Tony O’Brien will bring the audience up to In order to ensure maximum interaction date with issues related to cannabis-based in this interactive session, we would like medicines. There will be an update on the to hold numbers at 60 participants. evidence for effectiveness, clarity over the This session relates to the Hospice UK changing prescribing situation and the future workforce logic model and aims to support therapeutic options. the ‘Identification of the training and Dr Ros Taylor will reflect on the growing development needs of individual staff, carers dangers of polypharmacy in palliative care, and volunteers to enable them to provide the ethics and practice of de-prescribing. patients and families with high-quality There will be hot tips and key messages for palliative and end of life care that meets all clinicians. their individual and support needs.’ Our
28 | Dying for Change: Evolution and Revolution in Palliative Care Parallel sessions 2 design of services to support palliative care (15:30 – 16:45) for children and young people. Following a long career in hospice and 2.1 Conference papers: Informing hospital palliative care, Dr Diane Laverty service development will talk about her new role in the London This session includes presentation of four Ambulance Service as their end of life lead, abstracts submitted via our Call for Papers. the changes she hopes to see, and how The abstracts are published in an online hospices and palliative care teams could conference supplement produced by BMJ work with their local ambulance teams. Supportive & Palliative Care, an official journal of Hospice UK. 2.4 Engaging effectively with people with lived experience 2.2 Is your culture eating your Learning from the experience of people organisation for breakfast? using our services is critical to improving Peter Drucker, the father of postwar care. With insights from the hospice and management development thinking acute sectors, join us to find out how the famously said ‘Culture eats strategy for NHSI Patient experience improvement breakfast’. Much is made of strategy but framework can help improve patient does your organisational culture help or experience and how clinicians shadowing hinder progress towards your goals? patients and families can help us to see care During this presentation, hear from Sarah through a new lens. Pugh, Chief Executive at Heart of Kent Hospice and David Robinson, Chief Plenary 2 Executive at Derian House Children’s (17:00 – 18:00) Hospice about the circumstances they faced when joining their organisations and how Too much, too late. Data, drugs and they tackled the prevailing culture to bring dying about change. The process was not easy but essential in order to improve care and Lucas will share compelling themes from his reach. work on ageing and frailty near the end of life, the use of medications of questionable In this frank session, you will have the clinical benefit, and the impact of spousal opportunity to share your views and bereavement on health in old age. He has experiences of this difficult but critical issue. key messages for the UK about the value of big data – and presents in a way that non- 2.3 Primary palliative care – where statisticians can understand. the action is! Dr Sarah Mitchell will share her vision for primary palliative care in the UK, the impact of the Macmillan GP model, current barriers and challenges in terms of GP continuity and the changes in general practice. There will be key messages for hospices. She will also share learning from her PhD on the
www.hospiceuk.org/conference | 29 Are you finding it challenging to obtain stock medication?
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Thursday 21 November
Plenary 3 landscape and will challenge us to consider (09:00 – 10:00) how we can further that reach across all care settings. Vision for nursing The challenge to end of life care and hospice settings is the same as those for our Parallel sessions 3 community and NHS colleagues. Hospice (10:45 – 12:00) UK is aware that our members need to further engage with the development of 3.1 Conference papers: Symptom integrated care systems and to be present management and treatment within the local, region and national debate This session includes presentations of four to ensure future care models meet the needs abstracts submitted via our Call for Papers. of our diverse population. Part of the solution The abstracts are published in an online will be to work more closely across our care conference supplement produced by BMJ settings and, through collaboration, to break Supportive & Palliative Care, an official down some of the perceived barriers. journal of Hospice UK.
Ruth May, Chief Nursing Officer for England, will share her thoughts as to where she sees our engagement in the current healthcare
30 | Dying for Change: Evolution and Revolution in Palliative Care 3.2 Getting started with large-scale care delivery in partnership with other change: an introduction organisations. In this session hear how their We have an increasing unmet need for approaches differ and how their ideas might palliative care and by 2040 this may spark inspiration in your own organisation. increase by up to 42%. 3.4 Dementia and palliative care: Sustainability of hospice services for the what’s possible? future and meeting unmet need depends Dr Emma Hodges will be talking about on our ability to work in partnership, deliver her PhD exploring dementia models and an integrated approach across a whole hospice care, her plans for a regional system and be able to navigate increasing Midlands Dementia Strategy and her complexity. We need to equip our teams partnership with Hammond Care in with change skills to work across complex Australia. systems, for teams to be resilient and align to Dr Emily Oliver, Consultant Admiral Nurse, deliver high-quality person and family-centred will share her wisdom around relationship- care. This is also happening at a time when centred care and dementia, its impact on we are time limited and have potentially nurses, what she learnt from her PhD, the many more people to communicate with, for interventions which were valuable, and example acute trusts, care homes, social what may be relevant for nurses working in care, integrated care systems, CCGs, health palliative care with increasing responsibility and care boards, CQC and other charities. for dementia care. This Large Scale Change workshop is a Dr Nathan Davies, Marie Curie dementia real opportunity to: consider system-wide researcher will talk about heuristics/rules of working; share knowledge and practical thumb in dementia care, what they are and examples of successful Large Scale how they can help us. He will also describe Change; provide an introduction to the 10 the ground-breaking EMBED research core principles for Large Scale Change and programme exploring dementia care at the their application; signpost to key literature end of life and resources to support making change successful and sustainable. 3.5 Transition and change – an 3.3 Strategic alliances: the only way unexpected generation: supporting demand for end of life care can be our move into adult life and adult met? services How is your organisation approaching the This session will consider the challenges growing need for end of life care? With faced by the unexpected generation, demographic changes, increasing costs young people who have lived beyond their and a national shortage of skilled end of life expected years and now make the transition care staff what is your approach to these from children’s services into adulthood. challenges? It will do this through an overview of the Dorothy House Hospice near Bath covers a current landscape, a synopsis of the predominantly rural area. Harlington Hospice Hospice UK ECHO Transition project and in North West London serves a densely a presentation of a recent collaborative populated urban area. Both are undertaking research project. We will hear from the
www.hospiceuk.org/conference | 31 Open University and members of and consider new approaches to strategic AdversiTeam, the group of young people workforce planning for hospices, providing with experience, as they present the some practical examples and opportunities ‘Talking about Sex’ project. This will include for discussion an overview of the research project as We will hear about the challenge for medical well as introducing the new online open workforce planning for the future, a current educational resources, the third edition of case study shared by a hospice chief the Guidance and Standards. There will also executive along with evidence-based theory be opportunities to discuss presented video and practice about strategic workforce clips. planning. The workshop session will provide an opportunity for learning and discussion Lunchtime event and we will be engaging in active audience (12:40 – 13:25) participation. Research café 4.3 Long-term care and palliative The research café is an informal session care – what is the interface? that aims to facilitate discussion around both Tiffany Barron Gutierrez will share her undertaking and implementing research in experience of the impact of good nutrition hospices. We will be joined by Professor for the frail older person, the innovations Gunn Grande, from the University of implemented at Nightingale Care Home in Manchester, Dr Sally Boa from Strathcarron South London, and how she has influenced Hospice and Professor Kate Flemming from other care staff. There will be messages for Hospice UK to explore your experiences palliative care staff working with frail older and to discuss research-related matters. people in all settings.
George Coxon will share his views and Parallel sessions 4 experience on integrated health and social (13:30 – 14:45) care in long term care, how collaborations with palliative/hospice team work – and what 4.1 Conference papers: Rehabilitation makes a care home outstanding. He has and addressing unmet needs previously spoken at the Kings Fund Care This session includes presentations of four Home Conference, with key learning points abstracts submitted via our Call for Papers. for those working in palliative care. The abstracts are published in an online conference supplement produced by BMJ Kerry Bareham will focus on how St Supportive & Palliative Care, an official Barnabas Hospice has won CCG funding journal of Hospice UK. to massively scale up their support for care homes in Lincolnshire via Project ECHO. 4.2 Workforce modelling and She will share the journey, the barriers, top scenario planning for the future tips for others – and how they persuaded Given the challenge of future service the CCG to invest. sustainability and demographic changes together with the known workforce shortages, this session will focus on palliative care need at a population level
32 | Dying for Change: Evolution and Revolution in Palliative Care 4.4 Too much, too late? will also hear about plans for next steps, De-escalation of curative and will have the opportunity to share their treatment – a challenge for all views. This conference session considers the shifting lines between intensive, disease- Plenary 4 directed treatment and palliative care. It (15:45 – 16:45) addresses the inherent dilemmas that this brings and the challenges that are faced. Human: solving the workforce crisis It will draw on the experience of clinicians in Healthcare working in the children’s hospice setting where complex, skilled-based care is increasingly in demand and the divergent views of young people, their parents/ carers and the healthcare team who meet in associated challenging conversations. The subject will be framed through a case study approach and then an interactive, facilitated discussion.
This session is relevant for all working within end of life care – as we now all face the question, ‘Is it a case of too much too late?’.
4.5 Understanding the impact of Visit stand hospice care: emerging findings from the HOLISTIC study 37 In January 2017, Hospice UK was in the commissioned by NHS England to exhibition hall undertake a study to examine the effect of hospice-led interventions on the amount of time that people spend in hospital at the end of life.
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FOR MORE INFORMATION VISIT 33 about.medicinescomplete.com/hospiceuk_o er Friday 22 November
Parallel sessions 5 focus on what’s happening, and what (09:00 – 10:15) could be done, from the following three perspectives. 5.1 Conference papers: Workforce support and development Anna Bennett, Charities Partner at This session includes presentations of four haysmacintyre, will talk about financial risk abstracts submitted via our Call for Papers. and how to manage it without becoming The abstracts are published in an online paralysed. Toby Porter, Chief Executive at conference supplement produced by BMJ Acorns Childrens Hospice, will offer a case Supportive & Palliative Care, an official study on strategic and financial risk and journal of Hospice UK. lessons learned from Acorns. Craig Duncan, Chief Operating Officer at Hospice UK, 5.2 Are we really supporting family will present the national picture and trends carers? across all charities. Kirsten Alderson will discuss the innovative range of services offered to carers by the 5.4 Triple value and population award-winning Suffolk Carers service. She healthcare will explore the challenges of supporting St Helena has been working with the Oxford carers and offer top tips for hospices from the Centre for Triple Value Healthcare and experience in Suffolk. Imperial College London to create a triple value population healthcare system for end Professor Gunn Grande’s presentation will of life care in North East Essex. Triple value focus on implementing person-centred carer is about value for the individual, technical assessment and support in hospice care, value and value for the whole system. including lessons learnt from hospices and Population healthcare management is an how to move forward. integral element of integrated care systems Professor Philippa Hunter-Jones will and a priority within the NHS Long Term present the Trajectory Touchpoint Technique Plan. innovation to capture patient and carer This new thinking builds on work to develop experience. She will explain the essentials an integrated end of life care model in North of the technique, and will share examples East Essex over the last five years. The end of the palliative voices collected – and how of life care programme has been used as a hospices/palliative care teams can embed test-bed for prototyping new ways of working this technique to evaluate user experience to both improve end of life outcomes for the 5.3 Lions and Tigers and Bears – whole population and to generate learning for other programmes across the Integrated financial and strategic risks facing Care System. hospices This session will look at the financial This session will: and strategic risks facing the sector both • introduce the concepts of triple value and nationally and locally. It will have a practical population healthcare in the context of palliative and end of life care
34 | Dying for Change: Evolution and Revolution in Palliative Care • describe how an integrated approach AGM for Hospice UK to end of life care has been embedded within the Integrated Care System and Plenary 5 (11:00 – 11:45) • introduce the first ever Atlas of Value for end of life care The AGM is open to everyone at conference • highlight how St Helena is developing a but voting is restricted to the representatives capitated model for commissioning and of full member hospices. It is followed by funding end of life care to transform end plenary 5: a conversation with Matthew of life care outcomes across Suffolk and Reed, reflecting on his first year in post North East Essex. and his vision for the future. 5.5 How can the Dying Matters Parallel sessions 6 campaign help your organisation (13:00 – 14:00) and your community? Would you find it easier to do your job if 6.1 Conference papers: Community people talked about death? Do you know engagement and collaboration how to get your local community involved This session includes presentations of three in talking more about death, dying and abstracts submitted via our Call for Papers. bereavement? Can you help patients The abstracts are published in an online and families to address end of life care conference supplement produced by BMJ arrangements, death wishes and funerals? Supportive & Palliative Care, an official journal of Hospice UK. Find out how the Dying Matters campaign could help your organisation and local 6.2 Gypsies and Travellers community talk more about death, dying How can you make a difference to the care and bereavement. Hear from others about of Gypsy and Traveller communities? their experiences of running death cafés and grave talks and try out practical exercises on Struggling with high levels of bereavement how to break the ice with people on talking and carer stress, along with poor access to about this notoriously difficult subject. healthcare services, Gypsies and Travellers are known to face some of the most severe Discover how you can get involved with the health inequalities in the UK today. Find Dying Matters campaign and join the 12k out how to make a difference by joining this people already part of the Dying Matters absorbing workshop hosted by Friends, community. Learn about the benefits and the Families and Travellers on the cultures of information we can provide. Gypsy and Traveller communities around dying and bereavement and personalised end of life care.
www.hospiceuk.org/conference | 35 6.3 Supporting fundraisers to be During this session, discover how hospice resilient fundraisers really feel about the support Resilience can be described as the ability they receive from their organisations both of a substance or object to spring back into within their day-to-day work and when shape, the capacity to recover quickly from times get tough. In this session you’ll also difficulties. The 2015 Hospice UK report learn how you can ensure that everyone on resilience focused on clinical staff and in your organisation feels supported and the literature review stated that no work on sees themselves as part of the income income generation teams had been found. generation team.
Responsible for raising more than £1bn of 6.4 Towards a new national data voluntary income each year, the hospice set for hospice care: findings of fundraising environment is becoming proof of concept increasingly difficult. Income streams are reaching maturity and there is increasing Palliative and end of life care in the UK competition for the local fundraising pound. lacks a consistent, national data set Combined with the increasing demand for that helps us understand everything care and stretched resources, who in your from inequalities in access to numbers organisation is ensuring that you have a of people supported. Hospice UK has resilient fundraising team who can spring been testing a new data set, focussed back in shape when there are knockbacks? on patient characteristics and automated reporting.
Come and hear what we found in the data from 15 partner organisations and what Mum of two Pamela, was unable to afford treatment the new data set could mean for hospice for advanced breast cancer. With no access to care. palliative care she lived with untreated wounds and only paracetamol for her pain. Home-based care 6.5 ‘To err is human’: patient supported by Hospice Care Kenya changed her life. safety in hospice care What are the most important areas to focus on in order to improve patient safety in hospice care? What are the foundations for patient safety improvement?
This session will consider the foundations, provide an update of the current national and local contexts and feature practical examples to support improvement in this area.
In Kenya, 8 in 10 people do not survive cancer, Participants will have time to reflect and yet only 1 in 10 has any access to palliative care. feedback on priorities for hospices. Please help us reach more people in need in Kenya. Donate or read more at www.hospicecarekenya.com Speaker profiles
This section includes profiles of our plenary topics at the Edinburgh Fringe Festival and at speakers. Profiles of other speakers can Hay Literary Festival. be found on the conference website. A few years ago he had a brief brush with www.hospiceuk.org/conference fame, when his posthumous letter to David Tracey Bleakley Bowie, which covers the components of good end of life care, went viral on the internet and in Tracey is the Chief Executive of Hospice UK, global newsrooms. The letter has been made the national charity for hospice and palliative into a classical music composition which was care. aired on BBC Radio 3, and has been publicly read out by various celebrities and drifters in Tracey joined Hospice UK in January 2016 locations including New York, London, Hay-on- before which she was Chief Executive Wye, Edinburgh and Berlin. of the Association of Police and Crime Commissioners. Her previous roles include Apart from working for Velindre University NHS Chief Executive of the Personal Education Trust, Cardiff University, and the Welsh End Group (pfeg) where she led a successful Of Life Care coalition Byw Nawr, he is also a campaign for financial education to be included Bevan Commission Senior Fellow. He is also in the National Curriculum. She was also UK the Welsh national strategic lead for Advance Director of the charity MEND, which tackles & Future Care Planning. A further role is as a obesity and promotes health living, and spent teaching faculty member for Harvard Medical 13 years in management consultancy with School’s Global Clinical Scholars Research Price Waterhouse, Accenture and ITV. Tracey Training (GCSRT) programme, and he is is currently a trustee of Independent Age. on the editorial board for BMJ Supportive & Palliative Care journal. She holds an engineering degree, MBA, postgraduate qualifications in International and Lucas Morin Social Policy and is a Chartered Director. Lucas Morin is an epidemiologist at the Aging Dr Mark Taubert Research Centre of Karolinska Institutet in Stockholm, Sweden. He uses routinely Mark Taubert is a palliative care doctor and collected administrative and healthcare senior lecturer. He created the TalkCPR.com data (‘big data’) to explore issues related to website and app and has given a Ted Talk palliative care, medication use in old age, and on why language and wording is important bereavement. in palliative care. He writes for international newspapers and web based media outlets on These topics reflect his research interests contemporary medical topics. Mark took part which include the use of potentially inadequate in a BBC Horizon programme on palliative medical interventions at the end of life, the care alongside Kevin Fong, and has also done impact of spousal bereavement in old age, extensive media work with television, radio and quality of end of life care in nursing homes, online resources. He has talked about medical polyphamarcy and inappropriate drug use among older people.
www.hospiceuk.org/conference | 37 Speaker profiles (continued)
Before joining the Karolinska Institutet, He is one of the foremost global experts on Lucas was Director of the French National healthcare systems and has a pioneering Observatory on End of Life Care in Paris, and inspiring global vision for health in both France. the developed and developing world. Mark has dedicated his entire professional life to Ruth May healthcare and has led organisations at local, regional, national and global levels – provider Ruth enjoyed national appointments with NHS and payer, public and private. Over the past Improvement and Monitor as well as regional nine years, he has worked in 77 countries on and Trust leadership roles before becoming circa. 300 occasions, gaining a unique first- the Chief Nursing Officer for England in hand experience. January 2019. As Regional Chief Nurse for the Midlands and East, she championed the Mark was appointed Chief Executive of ‘Stop the Pressure’ campaign; nearly halving University Hospitals Birmingham in 2000. He the number of pressure ulcers in the region, masterminded the largest new hospital build in improving care for patients, and delivering cost NHS history, established the Royal Centre for savings to the NHS. Defence Medicine and developed one of the highest performing healthcare organisations in Ruth is passionate about nurturing the next the UK. generation of NHS nursing, midwifery and AHP leaders, encouraging professional development He went on to run the NHS region from Oxford opportunities and putting in place the optimal to the Isle of Wight before joining the NHS cultural conditions for all NHS employees to Management Board as a Director-General at thrive. This includes advocating for improved the Department of Health, where he developed mental health awareness, championing High Quality Care for All with Lord Darzi. He volunteer activity to support the frontline joined KPMG as Global Chairman and Senior workforce, and she is a vocal supporter of the Partner for Health in 2009 and has established Workforce Race Equality Standard agenda and a successful worldwide health practice. increased diversity across the NHS. Between 2014 and 2018, Mark sat as a Proud mum to her wonderful daughter, Ruth is member of the Global Agenda Council on a great believer in a healthy professional and the Future of the Health Sector for the World home life balance for all. Economic Forum. Mark is the author of In Search of the Perfect Mark Britnell Health System, published by Palgrave As the Global Chairman and Senior Partner Macmillan. His new book, Human: solving for Healthcare, Government & Infrastructure at the global workforce crisis in healthcare was KPMG International, Mark oversees revenues published by Oxford University Press in March of $6 billion supporting 40,000 staff across 157 2019. countries.
38 | Dying for Change: Evolution and Revolution in Palliative Care Mark has been a Non-Executive Director at Margaret Heffernan Dr Foster, a trustee of the British Pregnancy Advisory Service and a board member of Margaret produced programmes for the BBC Prostate Cancer UK. for 13 years. She then moved to the US where she spearheaded multimedia productions for Matthew Reed Intuit, The Learning Company and Standard & Poors. She was Chief Executive of InfoMation Matthew became Chief Executive of Marie Corporation, ZineZone Corporation and then Curie in 2019 having previously served as iCast Corporation, was named one of the Chief Executive of The Children’s Society, Top 25 by Streaming Media magazine and Chief Executive of the Cystic Fibrosis Trust and one of the Top 100 Media Executives by The a director of Christian Aid. Hollywood Reporter.
Before that, Matthew was a parish priest where The author of five books, Margaret’s third he had the privilege of caring for a number of book, Willful Blindness: Why We Ignore the people in the last chapter of their lives. Obvious at our Peril, was named one of the most important business books of the decade He is passionate about social justice and by the Financial Times. In 2015, she was ensuring that everyone who is dying – and awarded the Transmission Prize for A Bigger their families and loved ones – have the very Prize: Why Competition isn’t Everything and best holistic support for life and clinical care How We Do Better, described as ‘meticulously they can. Matthew is now leading Marie Curie researched…engagingly written…universally whose aspiration is that everyone who is dying, relevant and hard to fault’. and their loved ones, have the best possible quality of life and, when the time comes, a Her TED talks have been seen by over nine dignified and ‘good’ death. million people and in 2015 TED published Beyond Measure: The Big Impact of Small Matthew has a degree in Theology from the Changes. She is Lead Faculty for the Forward University of Oxford, a degree in Engineering Institute’s Responsible Leadership Programme and Management from the University of and, through Merryck & Co., mentors CEOs Nottingham, and a Masters in Management and senior executives of major global from the University of Surrey. organisations.
Margaret holds an honorary doctorate from the University of Bath and continues to write for the Financial Times and the Huffington Post.
www.hospiceuk.org/conference | 39 Posters
Abstracts submitted via a Call for Papers • Patient care were selected for display as posters by a • Service development, models and group of reviewers. Posters are grouped collaborative working thematically and will be on display throughout conference in the Exhibition • Supporting bereavement, loss and grief Hall. They are grouped under the themes • Workplace business and culture listed below: Abstracts of all the posters, and of those • Communication and conversations presented orally in the Conference Papers • Communities and community engagement sessions, are published in an online conference supplement produced by BMJ • Developing and supporting the workforce Supportive & Palliative Care, an official journal • Generating research, knowledge and of Hospice UK. outcomes
Is your oxygen equipment compliant?
There have been several incidents in hospices involving fire and medical oxygen where patients’ lives may have been saved, or their injuries limited, if firebreaks - devices that stop the flow of oxygen in the event of a fire - had been fitted.
If your hospice owns oxygen equipment for use by patients, either in the form of cylinders, liquid, or concentrator, it is your responsibility to understand the legal requirements and recommendations around firebreaks.
For more information – or for details of our all-in-one Oxygen Administration Kit for Quality you can trust, hospices and care homes - drop by our stand and talk to our team or visit firebreaks.info/uk people you can count on.
Tel: 01623 628281 | Fax: 01623 628289 | [email protected] www.bprmedical.com 40 | Dying for Change: Evolution and Revolution in Palliative Care Exhibitor directory
Associations and membership Charitable organisations bodies Marie Curie Association of Chartered Physiotherapists in Stand: 5 Oncology and Palliative Care Tel: 0800 090 2309 Stand: 41 Web: www.mariecurie.org.uk/support Tel: 02392 250001 Marie Curie Support Line: Web: https://acpopc.csp.org.uk [email protected] Contact: Maggi Hardcastle National Garden Scheme Email: [email protected] (Awards Sponsor) Association of Hospice and Palliative Care Stand: 24 Chaplains (AHPCC) Tel: 01483 211535 Stand: 8 Web: www.ngs.org.uk Tel: 01934 423900 Contact: Vicky Flynn Web: www.ahpcc.org.uk Email: [email protected] Contact: Karen Murphy Together for Short Lives Email: Stand: 38 [email protected] Tel: 0117 989 7820 Association for Palliative Medicine of Great Web: www.togetherforshortlives.org.uk Britain and Ireland and e-ELCA Email: [email protected] Stand: 6 Tel: 01489 668332 Cremation services Web: www.apmonline.org Pure Cremation Contact: Nadine Bondsfield Stand: 19b Email: [email protected] Tel: 07535 975989 Web: www.purecremation.co.uk Book sellers Contact: Tony Boultard Books you Need Email: [email protected] Tel: 0117 967 2928 Website: www.booksyouneed.co.uk Contact: John Tuffney Email: [email protected]
www.hospiceuk.org/conference | 41 Exhibitor directory (continued)
Healthcare e-Learning Higher education Blue Stream Academy The Open University Sexuality Alliance Stand: 34 Stand: 39 Tel: 01773 822549 Tel: 07739 988716 Web: www.bluestreamacademy.com Web: www.open.ac.uk/health-and-social-care/ Contact: Jo Eastwick research/sexuality-alliance Email: [email protected] Contact: Maddie Blackburn Email: [email protected] End of Life Care for All (e-ELCA) e-learning programme (at the Association for Palliative University of Liverpool Management School, Medicine of Great Britain and Ireland stand) Trajectory Touchpoint Technique Stand: 6 Stand: 40 Web: Tel: 0151 795 3018 www.e-lfh.org.uk/programmes/end-of-life-care Web: www.liverpool.ac.uk/management/ Contacts: Patricia Howe and Dr Rich Kitchen research/impact/dying-with-dignity Email: [email protected] Contact: Professor Philippa Hunter-Jones Email: [email protected] Real Talk – Loughborough University Stand: 7 Insurance Tel: 01509 228879 Web: www.realtalktraining.co.uk D E Ford Insurance Brokers, PIB Risk Contact: Becky Whittaker Management and PIB Employee Benefits Email: [email protected] Stand: 22 Tel: 01904 784141 Relias Learning Web: www.deford.co.uk Stand: 32 Contact: Stewart Archdale Tel: 0800 975 2941 Email: [email protected] Web: www.relias.co.uk Contact: Dee Enright Towergate Insurance Email: [email protected] (Dinner sponsor) Stand: 23 Tel: 07484 070309 Web: www.towergateinsurance.co.uk/hospice-insurance Contact: Harpreet Sahota Email: [email protected]
42 | Dying for Change: Evolution and Revolution in Palliative Care Lotteries Lisclare Stand: 11 Local Hospice Lottery Tel: 07714 767689 Stand: 30 Web: www.lisclare.com Tel: 01245 228945 Contact: Stephen Hignell Web: www.localhospicelottery.org Email: [email protected] Contact: Cheryl Bunkle Email: [email protected] Oralieve Stand: 14 Your Hospice Lottery Tel: 01582 436 069 ext 225 Stand: 21 Web: www.oralieve.co.uk Tel: 0800 285 1390 Contact: Emily Baker Web: www.yourhospicelottery.org.uk/become- Email: [email protected] a-hospice-partner.aspx Contact: Gemma Zweck OSKA Email: [email protected] Stand: 13 Tel: 0845 3810600 Medical equipment and suppliers Web: www.oska.uk.com Contact: Wesley Elkins Arjo UK Ltd Email: [email protected] Stand: 42 Tel: 07780 955468 Wissner-bosserhoff / LINET UK Web: www.arjo.co.uk Stand: 29 Contact: Kim Buttress Tel: 01548 843586 Email: [email protected] Web: www.wi-bo.com/en-WI Contact: Rob Marsden BPR Medical Limited Email: [email protected] Stand: 14b Tel: 01623 628281 Medical information Web: www.bprmedical.com Contact: Angela Owen The Care Database Email: [email protected] Stand: 18 Tel: 01932 239425 Guldmann Web: www.thecaredatabase.com Stand: 26 Contact: Tom Bradley Tel: 01347 825287 Email: [email protected] Web: www.guldmann.com Contact: Jack Wray EMIS Health Email: [email protected] Stand: 27 Tel: 0113 380 3000 Web: www.emishealth.com Email: [email protected]
www.hospiceuk.org/conference | 43 Exhibitor directory (continued)
Pharmaceutical services Professional services Ashtons Hospital Pharmacy Services Haysmacintyre LLP Stand: 43 Stand: 16 Tel: 01273 224604 Tel: 020 7969 5542 Web: Web: www.haysmacintyre.com http://hospice.ashtonshospitalpharmacy.com/ Contact: Anna Bennett Contact: Graeme Whittaker Email: [email protected] Email: KKE Architects [email protected] Stand: 12 Lloyds Pharmacy Tel: 01905 358626 Stand: 3 Web: www.kkearchitects.co.uk Tel: 07736 472693 Contacts: Jorge Eguiguren and Phil Kavanagh Web: www.lloydspharmacy.com/ Email: [email protected] outsourcedpharmacyservices Contact: Gwyn Williams Recyclers Email: [email protected] Choice Textile Ltd. Pharmaceutical Press Stand: 4 Stand: 37 Tel: 020 8965 6699 Tel: 020 7572 2361 Web: www.choicetextile.com Web: https://about.medicinescomplete.com/ Contact: Michael Bloedorn Contact: Louise Whittaker Email: [email protected] Email: [email protected] SORT UK Procurement Stand: 36 Tel: 07841 399933 Hospice Quality Partnership Web: www.sorttextilesuk.org Stand: 20 Contact: Mark Watson Tel: 01625 509198 Email: [email protected] Web: www.hqp.org.uk Contact: Tracey O’Keefe Retail services Email: [email protected] Acopia Limited Stand: 2 Tel: 01243 833067 Web: www.acopia.co.uk Contact: Terry Gardner Email: [email protected]
44 | Dying for Change: Evolution and Revolution in Palliative Care Skyline Business Services RLDatix Stand: 15 Stand: 1 Tel: 020 8050 7514 Tel: 020 8971 1940 Web: www.skylinebusinessservices.co.uk Web: www.rldatix.com Contact: Barry Moles Email: [email protected] Email: [email protected] SMI Care Wil-U / PxTech Stand: 44 Stand: 19 Tel: 0115 922 9241 Tel: 01332 921300 Web: www.smicare.com Web: www.wil-u.com Contact: Nicola Waite Contact: Chris Richards Email: [email protected] Email: [email protected] St Helena – My Care Choices and Atlas of Value Software companies & Stand: 9 HR Systems Tel: 01206 851560 CIPHR Ltd. Web: https://mycarechoices.online/ Stand: 31 Contact: Mark Jarman-Howe Tel: 01628 814242 Email: [email protected] Web: www.ciphr.com Vantage Technologies Contact: Steve Spires (Drinks Reception Sponsor) Email: [email protected] Stand: 25 Establishment Genie Tel: 0114 247 9500 Stand: 28 Web: www.vantage-technologies.co.uk Tel: 07971 106265 Contact: Martyn Goodhand Web: www.establishmentgenie.com Email: Contact: Richard Cooper [email protected] Email: [email protected] VR and Simulation Technology Kudos Software Stand: 10 Immersive Technologies Tel: 01548 843586 (Water Bottle Sponsor) Web: www.kudos-software.co.uk Stand: 33 Contact: Charlotte Savege Tel: 01704 548396 Email: [email protected] Website: www.immersive.co.uk Contact: David Salt Email: [email protected]
www.hospiceuk.org/conference | 45 Acknowledgements
Hospice UK would like to thank the Jed Jerwood, Clinical Academic Researcher following people, who contributed to and Art Psychotherapist, John Taylor Hospice the reviewing and scoring of abstracts and Birmingham and Solihull Mental Health submitted via the Call for Papers. Trust Nikki Archer, Director of Supportive Care, Bridget M Johnston, Research Assistant, Public St Giles Hospice Health and Primary Care, Trinity College Dublin
Dr Caroline Belchamber, Professional Linda McEnhill, Chief Executive, Ardgowan Education Lead, Sue Ryder Hospice
Jane Berg, Deputy Director Skills, Knowledge Libby Milton, Lead Nurse, Marie Curie Hospice and Research, Princess Alice Hospice Edinburgh and West Lothian
Dr Sally Boa, Head of Palliative Care Dr Ollie Minton, Macmillan Consultant in Education, Research and Practice Palliative Medicine; Honorary Senior Lecturer, Development, Strathcarron Hospice St George’s University Hospitals NHS Foundation Trust Matthew Bodley, Grants Coordinator, Hospice UK Bridget Moss, Head of Education, Saint Francis Hospice Lizzie Chambers, Director of Insight and Programmes, Together for Short Lives Elizabeth Palfreman, Head of Hospice Support, Hospice UK Karen Charnley, Head of Institute, All Ireland Institute of Hospice and Palliative Care Dr Fiona Rawlinson, Reader, School of Medicine, Cardiff University Dr Janet Diffin, Evaluation Fellow, Project ECHO Hospice UK and Northern Ireland Carole Walford, Chief Clinical Officer, Hospice UK Dr Helen Findlay, People in Partnership Group, Hospice UK We would also like to thank: Dr Lorna Fraser, Senior Lecturer, Department • Compleat Conference Company for their of Health Sciences, University of York; management of the Call for Papers and Director, Martin House Research Centre other aspects of conference.
Professor Gunn Grande, Professor of Palliative • BMJ Supportive & Palliative Care, an official Care, University of Manchester journal of Hospice UK, for their generous provision of a prize for the poster exhibition. Dr Erna Haraldsdottir, Head of Education, Practice Development and Research, St Columba’s Hospice
Melanie Hodson, Head of Information Support, Hospice UK
46 | Dying for Change: Evolution and Revolution in Palliative Care Thank you to our sponsors
www.hospiceuk.org/conference | 47