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/
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
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)
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
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:
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 March – Training on the new BMA/RCP for Gowerton Surgery – and GPs from surrounding surgeries (23 GPs)
22 January 2019 – Training 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).