(For FORTHCOMING talks –  see “Future Events”)

2023

21st March 2023: Asian Institute for Bioethics and Health Law at Yonsei University, Ethics of End-of-life care: From Discourse, Policy to Practice, 20th – 22nd  March 2023, South Korea. We delivered the keynote on 21st March: “From empirical research findings – to legal change – a case study from the UK”

24th March 2023 – contributed 3 sessions to “PDoC and the application of the Mental Capacity Act NHS training event” in Somerset

 3rd-4th May: Jenny Kitzinger spoke on: “Innovation, online learning and end-of-life care for people in Prolonged Disorders of Consciousness”  at the Centre for Death and Society Conference,  “Innovation at the end of life”, 3rd-4th May

20-22 June: Dr Julie Latchem-Hastings and Dr Geraldine Latchem-Hastings presented on: “Developing and piloting immersive simulation in severe brain injury health care education: translating research findings into innovative interventions for pre and post registration training.”, at the COMET conference, Cork, Ireland

7th September: we contributed to the Intensive Care Society study day on Neuroprognostication

2022

This year saw the launch all our training as a series of online courses that can be done at a time convenient to learners – all available at www.cdoctraining.org.uk

Talks given in 2022 included:

22 Feb 2022 Borderlands of Living (Denmark), we spoke on ‘Consciousness and Uncertainty’

16-17th June 2022 contributed to “Disorders of Consciousness and MDT conference”, Holy Cross hospital

August – Jenny Kitzinger did a podcast interview with the Brainy Speech Therapist

6th October 2022 Spoke at Northwick Park, RHRU​’s virtual conference on “Translating the PDoC Guidance into Practice” 

November 2022, “Legal & Ethical – Adverse Outcomes – Case Review on the ICU”, Intensive Care Societies Legal & Ethical Advisory Group Study Day – spoke on. ‘When survival may be an adverse outcome’ – a recording of this talk is available at: https://vimeo.com/776524644/8f63037b38

30 November 2022, “Rising to the Challenge: Managing the diverse challenges in the field of brain injury”,Elysium Conference, London, Presented on:  “Facing difficult life and death decisions on behalf of a loved one with a disorder of consciousness: Changes to the law on CANH”

Grant success – ESRC IAA award to develop medical simulations to improve care for PDoC patients. Dr Geraldine Latchem-Hastings and Dr Julie Latchem-Hastings led this bid for funding – we filmed a PDoC clinical scenario and a ‘family meeting’ to use in student training

We also contributed to other online and face-to-face training events e.g see powerpoint from  SWL Clinical Webinar 28th April 2022.

2021

Lots of training and talks delivered this year. But the big news was that Celia Kitzinger and Jenny Kitzinger won a national award from the ESRC for “Impact on Public Policy”

You can see a film about this here:

 

 

2020

30 October 2020 Interviewed about the representation of coma – with Rod Quinn on ABC’s “Overnights”  (Australian Broadcasting Company) (Starts 3hrs 35 mins) https://www.abc.net.au/radio/programs/overnights/overnights/12809264

1 October 2020. The ‘Journalism News’ outlet published a short piece about our training for journalists to improve reporting of the vegetative and minimally conscious state  https://twitter.com/journalismnews/status/1311629375645810689

September 2020, we completed the final seminars for our “Caring for PDoC Patients” course – thank you to all the healthcare professionals who signed up for this course and shared their experiences and learning with us. (see cdoctraining.org.uk)

21 July 2020 Jenny Kitzinger did a live interview on BBC Gloucester Radio Anna King show – exploring the media representation of induced coma, coma and the vegetative state, and exploring perceptions of recovery

13 July 2020 Jenny Kitzinger launches the #PDoCMediaWatch online course exploring media representation of the long term vegetative state. 140+ people register for this course including journalists, healthcare professionals, media studies students, people doing Masters in medical ethics, and family members of patients in PDoC.

15 June 2020  Celia Kitzinger and Gillian Loomes Quinn launch the ‘Open Justice’ in the Court of Protection project,  @OpenJusticeCoP.  This initiative supports public observers to witness best interests decision-making in practice across a wide range of CoP hearings and promotes transparency

8 April 2020 –  Talk by Celia Kitzinger for the online seminar organised by the Public Law Project: “Remote Justice: access to courts and tribunals during the pandemic” 8th April 2020 (see https://publiclawproject.org.uk) Record of talk available at youtu.be/und737YOcTU (Presentation to a virtual seminar live audience of 100 participants, further engagement with another 100+ views). 

29 March 2020 Following attending the first ever all remote CoP hearing (due to Covid-19), Celia Kitzinger wrote the following blog about the impact of ‘remote justice’ from the point of view of the daughter of the person at the centre of the case http://www.transparencyproject.org.uk/remote-justice-a-family-perspective/

5 March 2020 We spoke at a study day on Advance Decisions in Gregynog, Wales, with around 100 healthcare professionals working in this area (eg Advance Care Planning nurses) #ADRTStudyDay

 

2019

November-December 2019 – we made a series of visits to key rehab centres to review feedback on our e-learning, collect additional film for and further develop the materials

24-29 November – We participated in the Rockfeller event, Bellagio, as part of the Lancet commission on ‘The Value of Death’, Bellagio, Italy. The report we worked on there will be published in 2020

20 November 2019 – Celia Kitzinger spoke at the Centre for Social Ethics and Policy, Manchester University, addressing an audience of around 40 bioethics academics


19 November –  Julie Latchem-Hastings and Jenny Kitzinger visited the Royal Hospital for Neurodisability and Northwick Park to reflect on our e-learning about PDoC with a dozen e-learners and collect additional interviews from additional allied health care professionals to expand the resource materials.


18 November 2019 – We’ll spoke alongside a range of key clinical and legal experts at the discussion of the revised  RCP guidelines (to be published in early 2020).  Attended by around 80 healthcare professionals, the conference was titled: ‘Vegetative and minimally conscious states: diagnosis, management and end-of-life decisions to inform clinical and legal practice”. www.rcplondon.ac.uk/events/vegetative-and-minimally-conscious-states-diagnosis-management-and-end-life-decisions-inform

 


16th, 23rd, 30th October We ran our second set of 3 Webinars for CDoC e-learning participants.  These webinars covered: communicating with families, best interests decisions making, medical treatments, law and ethics.


14 October  2019  We spoke on CANH – supporting decision making and best practices to a group of around 40 allied healthcare professionals at the De Vere Conference in London. www.healthcareconferencesuk.co.uk/assets/conferences-and-masterclasses/conferences/2019/oct-2019/clinically-assisted-nutrition-and-hydration-oct-2019.pdf.


 

10 October  – Person centred working in Dementia Care: All Wales Forum. We talked to a mix of 50 doctors, AHPS, and clinical psychologists about decision-making on life sustaining treatment, Aberystwyth University. https://www.pcwdc.rhiwen.com


 

7 October 2019 – Croydon Medical Society – we led a discussion with around 25 doctors about their role in medical treatment decisions for patients without capacity to make decisions for themselves.


2 October – We contributed to the study day for Parenteral and Enteral Nutrition Group [PENG] (a specialist group of the British Dietetic Association). Celia Kitzinger spoke about the new CANH guidance, and more generally about the decision making that should take place with regards patients lacking mental capacity. (The Studio in Birmingham; attendees approximately 120 dietitians)


2  October 2019 Webinar for CDoC e-learning participants, 2pm ‘The challenge of caring for PDoC patients’ – ran by Dr Julie Latchem-Hastings and Dr Geraldine Latchem-Hastings

 


 

30 September 2019 -. Dr Julie Latchem-Hastings and Dr Geraldine Latchem-Hastings ran a morning of inter-professional for a mixed  group of 110 physios and operating department practitioners.


 

25 September Webinar for CDoC e-learning participants, 2pm ‘Definitions & Diagnosis of PDoC’ – run by Dr Julie Latchem-Hastings and Dr Geraldine Latchem-Hastings


 

24 September 2019 – Celia Kitzinger ran a session on the CANH Guidelines at a Study Day at Glan Clwyd Hospital in Bodelwyddan, Denbighshire, Wales (organised by the Betsi Cadwaladr University Health Board). The day  involved about 80 staff members including GPs, hospital doctors, nurses,  and care homes staff.  

 


 

23 September – Oxford Medical Law Conference. Jenny Kitzinger spoke to around 45  lawyers (many specialists in clinical negligence) about the role of lawyers in best interests decisions at this conference organised by Serjeants’ Inn & Oxford Neurosurgery  at Pembroke College, Oxford. https://www.serjeantsinn.com/seminars/10th-serjeants-inn-oxford-neurosurgery-medical-law-conference/


 

17 September 2019 – Jenny Kitzinger presented a discussion of ethics and decision-making about life-sustaining treatment at the University Hospital Wales as part of the MA in palliative medicine (to about 80 healthcare practitioners e.g. palliative care doctors).


3 September  – Derick Wade and Celia Kitzinger presented jointly on best interests at the National Conference of the Court of Protection Practitioners’ Association  in Leeds (to about 120 CoP practitioners).


8 July – 2019  Exploring the potential for creative and arts-based methods for applied psychological research.  Jenny & Celia Kitzinger contributed to a Seminar in the  British Psychological Society Seminar Series, University of the West of England, Bristol. About 70 psychologists attended.


 

28 June 2019 – Future Care Planning conference – we attended the day and contributed to workshop discussions about future care planning in Wales – with around 100 health care practitioners


 

27 June 2019 – Sue Ryder conference on Human Rights at the End of Life. Jenny Kitzinger discussed the importance of Advance Decisions as one tool to help defend human rights. Further info: https://www.sueryder.org/for-healthcare-professionals/education-and-training/human-rights-end-of-life-care/conference. We will also had a display and information stall available to the delegates. There a 120 attendees, working across health and social care.


 

25 June 2019 Jenny Kitzinger was part of a plenary  panel discussing the Mental Capacity Act at the Institute of Medical Ethics annual conference, Cardiff Metropolitan University,  24th to 26th June 2019. She presented on ‘Best Interests’ alongside Idris Baker and Lucy Series to around 80 delegates training or working in medical ethics http://ime.datawareonline.co.uk/Event-Booking/EventId/1042.  


25 June  – Celia Kitzinger gave a presentation at the Annual Conference  of the British Association of Brain Injury Case Managers, The Vox Conference Centre,  Birmingham. About 200 case managers attended this conference. Celia’s  focus was on the new guidance on clinically assisted nutrition and hydration from the British Medical Association and Royal College of Physicians

https://www.babicm.org/2019/01/08/headline-speakers-announced-for-the-babicm-annual-conference-2019-crisis-what-crisis/

 

 


 

15 May 2019 – Celia Kitzinger contributed to the “Let’s Talk about Dying” (Event for Dying Matters Awareness Week) Presenting on Advance Care Planning (advance decisions, advance statements, lasting power of attorney). University Hospital Leicester  (Audience consisted of 200 doctors and nurses, mostly working within palliative care).


15 May – Dr Julie Latchem-Hastings and Dr Geraldine Latchem-Hastings ran a session for 47 allied health care professionals on caring for PDoC patients as part of their MSc Studies in the School of Healthcare Sciences at Cardiff University.  The teaching had a global reach from the UK to the Middle East and Asia


 

14 May 2019 – Study Day organised at the Royal College of Speech and Language Therapists, London. We ran a workshop on Clinically Assisted Nutrition and Hydration and Advance Care Planning. (Attendees: 40 SLTs)


 

11 May – “Dying for Life” – Dying Matters Awareness Week, Cambridge. Presented on advance planning – advance decisions, advance statements and lasting power of attorney, Arthur Rank Hospice (audience – 60 members of the public)  https://www.dyingforlife.co.uk  


 

10 May 2019 – We presented on: “Missed opportunities for death and decision making for incapacitated patients” at the Annual Scientific Meeting of the Neuroanaesthetic and Critical Care Society​ of Great Britain and Northern Ireland (NACCS) 9-10 May. University of Strathclyde Technology and Innovation Centre, Glasgow. (200  anaesthetists and critical care doctors)

https://naccsgbi.org.uk/annual-scientific-meeting/2019-programme/


2 May – Spoke at “The Future of Advance Decisions in Mental Health and Mental Capacity Law”, Birmingham. Speakers included: Alex Ruck-Keene, 39 Essex Street and Kings College London; Samantha Halliday, University of Huddersfield and  Magdalena Furgalska, University of Birmingham. (40 Participants, mix of academics and clinicians). Further info see eventbrite


 

1 May – Co-ran PGR Workshop on “Academia and activism”, School of Law and Politics, Cardiff University. (15 PostGrad students in Law)


24 April 2019 – Celia Kitzinger spoke at a Continuing Professional Development Workshop alongside Derick Wade, Lynne Turner-Stokes and Andrew Hanrahan. The session on “Patients in a Prolonged Disorder of Consciousness – diagnosis and management” was attended by 40 professionals from a wide variety of background (neuro-rehab, legal,  palliative care, case management)

_____________________________________________________________________

24 April 2019 – Media Appearances and Interviews

Engagement with news of a ‘miracle’ recovery from a 27 year ‘coma’

Jenny Kitzinger gave a series of media interviews about this story – including on ‘Good Evening Wales’, Radio 4’s “World at One’, The Vanessa Feltz show and a series of other programmes – you can listen to these below.

Good Evening Wales – Radio Wales

 

_________________________________________________

World at One – Radio 4


 

The Sun newspaper – Video


 

Vanessa Feltz – Radio London

 


 

Drive – Radio 5 live


 

The James Whales show – Talk Radio

 

 


We also wrote a blog critiquing the early media coverage that was published in ‘The Conversation’ – which you can see here 

https://theconversation.com/can-you-wake-up-after-decades-in-a-coma-the-story-behind-the-headlines-116192

This was subsequently reprinted in a wide range of media outlets – including in translation.


 

Ongoing media work 2019

We continued to engage with journalists to try to correct inaccuracies and improve reporting. This was picked up on by international media such as reports such as:

https://www.univision.com/noticias/salud/no-es-como-en-las-peliculas-expertos-explican-el-caso-de-la-mujer-que-desperto-de-un-estado-de-coma-tras-27-anos.

https://www.thejakartapost.com/life/2019/04/28/awakening-from-decades-long-coma-very-rare-experts.html?

 


“It’s not like in the movies”: experts explain.

 



10 April
2019 – Acquired Brain Injury South Wales Forum. We talked about decision-making about feeding tubes, the meeting was at Swansea University, Singleton Park Campus, Room 226, Glyndwr Building. (18 attendees, including social workers, case manager, nurses, psychologists, doctors)


7-9 March – Third International Conference on End of Life Law, Ethics, Policy and Practice, Ghent, Belgium See the Programme here. Plenary was given by Celia Kitzinger on “Withdrawing Clinically Assisted  Nutrition and Hydration: New Supreme Court and professional guidance in England and Wales” (8 March) ( Audience consisted of around 150 clinical and legal experts from Europe, North America, Asia and Africa.

____________

6-7 April – Teaching on Law and Medical Practice – 25 doctors and allied health care professionals  (part of an MA), Cardiff Medical School

 

6 March  – Training on the new BMA/RCP  for Gowerton Surgery – and GPs from surrounding surgeries (23 GPs)


22 January 2019Training on the new BMA/RCP guidance for Awel-y-Mor care home, and associated medical team. (25 staff – including a range of  allied health care staff, GPs, ICU & neuro-rehab consultants and health board representatives).