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Get In Touch

Email: support@total.com
Phone: 1-800-Total-Theme
Address: Las Vegas, Nevada

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Frequent Speech/Presentation Themes

  • Communication in healthcare – how to get it right every time (including “difficult conversations”)
  • Palliative care, my experiences and how it has transformed and enriched my life and enabled me to live well and exceed my prognosis (well, all of them!)
  • Advance care planning, my experiences, “difficult conversations” and empowering professionals to have these conversations – and get them right
  • My experiences of personalised care, which may include any/all of the following – Personal Health Budgets, shared decision making, personalised care and support planning, supported self management, patient activation and patient choice – and often touches on the empowering nature of personalised care
  • Palliative care in the UK and universal health coverage, for my international palliative care work
  • Children’s and young people’s palliative care and being a young adult with a life-limiting condition
  • Sexuality for young people with life-limiting and life-threatening conditions
  • Patient involvement, coproduction, and running patient involvement/advisory/coproduction groups
  • Molly, Assistance Dogs and Dog Assistance in Disability (Dog A.I.D.)
  • Transition to adulthood, my experiences and how we can improve it and get it right for every young person – and what we can do to empower young people (where able) to step up, and support parents (where able) to step back, as I feel parents are the missing link in planning for transition to adulthood
  • Finding my voice and becoming a prominent patient leader, patient advocate, activist, speaker and consultant – how I got to where I am today
  • Living beyond your prognosis – and learning to live with your own death
  • My story generally and within the lens of specific aspects, topics or needs (i.e. sepsis, life on artificial nutrition, living with complex health needs, having a life-limiting condition etc.)

Upcoming Speeches

17.09.19 - Cambridge MCN Palliative Care

Topic:

I’ll be talking about my experiences of palliative care and of transition.

Date: Tuesday 17th September 2019

Location: Cambridge

20.09.19 - Care of Dying Adults in the Last Days of Life

Topic:

The care of adults in the last days of life, my experiences as a life-limited palliative care patient, advance care planning, difficult conversations, empowering patients, supporting family carers, the importance of care/treatment escalation plans in addition to a personalised care and support plan and an advance care plan, personalising end of life care, Personal Health Budgets and end of life care, and the NICE End of Life Care Quality Standards, End of Life Choice Commitment, Ambitions for End of Life Care and Carer’s Assessments.

Date: Friday 20th September 2019

Location: De Vere West One, Great Portland Street, London

04.10.19 - TEDxNHS

Topic:

To be confirmed.

Date: Friday 4th October 2019

Location: Indigo at the O2, London

14.10.19 - SHADA

Topic:

I will be speaking alongside my colleague Dr Sarah Earle (through our Open University Sexuality Alliance) about sexuality for young people with life-limiting conditions and launching our new resources, as well as talking about our Sexuality Guidance and Standards (third edition currently in process).

Date: Monday 14th October 2019

Location: London

18.10.19 - PHBs for the Health Financial Management Association

Topic:

My experiences of Personal Health Budget.

Date: Friday 18th October 2019

Location: Newmarket

07.11.19 - Suffolk Personalisation Event

Topic:

I’ll be talking about my experiences of personalised care and personal health budgets.

Date: 7th November 2019

Location: Suffolk

21.11.19 - Hospice UK Conference - OU Sexuality Alliance Work

Topic:

Alongside my Open University Sexuality Alliance colleagues, I’ll be talking about our work and specifically around the involvement of young people in our work and setting up the AdversiTeam Young Advisory Group and our experiences around sexuality with our life-limiting conditions.

Date: Thursday 21st November 2019

Location: Hospice UK 2019 Conference, Liverpool

05.12.19 - NHS Elect: Patient experience & quality improvement – breaking down silos for co-creation

Topic:

I am speaking at the “Patient experience & quality improvement – breaking down silos for co-creation” conference by NHS Elect, for which I will also be presenting some awards as part of the 2019/20 Patient Experience & QI Awards. My speech will be titled: “It’s personal” – Being a young patient with disability and life-limiting illness with complex health needs accessing NHS health services.

Date: Thursday 5th December 2019

Location: Central London

2019 Speeches

23.07.19 - Advocacy and Personal Health Budgets

Topic:

I shared my experiences of Personal Health Budgets and how advocacy over the years has played an essential part in me securing, setting up and managing my PHBs and helping me to advocate for myself in meetings to ensure the meetings and processes are always kept person-centred and personalised.

Date: Tuesday 23rd July 2019

Location: London

20.07.19 - Cass Business School - Hospice Leadership and Management module for the MSc in Voluntary Sector Management

Topic:

I gave a brief speech about my thoughts for the future of hospice care and hospice leadership, as well as helping to evaluate the individuals’ projects around the future of hospice care.

Date: Saturday 20th July 2019

Location: Cass Business School, London

17.07.19 - Chatham House Palliative Care Event

Topic:

I gave a brief speech about my experiences as a palliative care patient, how I benefit from palliative care and living in a country with universal health coverage, asked the World Health Organisation and everyone in the room to ensure everyone who needs palliative care has access to it – no one left behind – and reminded everyone that this is about people, at the end of the day, not policies, statistics, guidelines, processes etc. although they are essential to achieve palliative care for all.

Date: Wednesday 17th July 2019

Location: Chatham House, London (albeit I joined remotely)

15.07.19 - Brighton & Hove CCG - CHC & Personal Health Budgets

Topic:

My experiences of Personal Health Budgets (PHBs), including an overview of my life and needs, social care direct payments, the Continuing Healthcare (CHC) process, my Integrated Personal Budget (50% health funding (CHC) – 50% social care funding) and then my first PHB, the personalised approach we fought to secure for mum to be paid on the package, the falling apart of that PHB when mum became unwell, getting a directly commissioned package and that loss of autonomy and control and its devastating impact on me, then getting back onto a PHB, up to now with a partial PHB and my plans for the future of Phase 2 of my PHB which we’re in the process of setting up so my full 24 hour care will be on a PHB.

Date: Monday 15th July 2019

Location: Hove Town Hall

11.07.19 - Westminster Health Forum

Topic:

I spoke on a panel at the Westminster Health Forum Seminar titled “Innovation and technology in the NHS – development, uptake and workforce engagement” in the session entitled Key issues for technology use in health and social care – supporting integrated care, utilising data and responding to the pace of technological advances.I spoke about my experiences of technology in my care and possibilities for the future.

Date: Thursday 11th July 2019

Location: Royal Society of Medicine, Central London

09.07.19 - Eastern Region PHB Network - Transition Day

Topic:

I spoke at the event about my experiences of transitioning to adult services and adult life, including my fantastic social care transition and the transition social worker who ensured it went smoothly, my not-so-good (aka terrible) health transition in which I was “evicted” from paediatrics the week of my 16th birthday, and about my experiences of Personal Health Budgets and Integrated Budgets and of social care direct payments and how these fitted into my transition.

Date: Tuesday 9th July 2019

Location: Cambridge

13.06.19 - Lancet Series Launch on Communicating with Children About Life-Threatening Conditions

Topic:

I will be attending the launch of the Lancet series “Communicating With Children About Their Own or A Parent’s Life-Threatening Condition” and co-hosting the panel at the launch, including sharing my experiences.

Date: Thursday 13th June 2019

Location: Wellcome Trust, London

10.06.19 - St Francis Hospice Schwartz Round on Intimacy at End of Life

Topic:

I will be attending St Francis Hospice to talk about sexuality and intimacy for patients with life-limiting conditions and at end of life, at their Schwartz Round. I will be using some clips from our work with the Open University Sexuality Alliance as well as talking about my own personal experience and the broader experiences around intimacy from people with life-limiting conditions and our needs, wishes and desires. Schwartz Rounds “provide a structured forum where all staff, clinical and non-clinical, come together regularly to discuss the emotional and social aspects of working in healthcare.

Date: Monday 10th June 2019

Location: St Francis Hospice, Havering-atte-Bower

06.06.19 - Personalised Care and Personal Health Budgets in Essex Event

Topic:

Myself and some NHS England Personalised Care (Eastern Region) colleagues have organised an event on Personalised Care and Personal Health Budgets in Essex, to be held in Margaretting on 6th June. I will be co-facilitating the event as well as presenting a few different sessions throughout the day around personalised care and support planning, Personal Health Budgets and strategic coproduction.

Date: Thursday 6th June 2019

Location: Best Western Ivy Hill Hotel, Writtle Rd, Margaretting, Essex, CM4 0EH

10.05.19 - Clinically Assisted Nutrition and Hydration - De Vere West One

Topic:

I will be delivering a speech at the conference on my experience of Clinically Assisted Nutrition and Hydration (CANH) – in the form of intravenous nutrition (Total Parenteral Nutrition – TPN) and intravenous fluids which I rely on day-to-day for survival and have done for 8 years now, prior to that also relying on CANH for 2 years in the form of enteral feeding. This is due to having type 3 Intestinal Failure as a result of Chronic Intestinal Pseudo Obstruction (CIPO) and a rare form of Mitochondrial Disease. I will also discuss advance care planning and withdrawal of CANH and what steps I’ve had to take to ensure my TPN and fluids will be withdrawn in line with my wishes should I lack capacity to make that decision for myself.

Date: Friday 10th May 2019

Location: De Vere West One, Portland Place, London

05.04.19 - Gold Standards Framework Event

Topic:

I delivered a talk on communication, the importance of advance care planning, the vital need for professionals to give people permission, language, tools and support to talk about death and dying, and my experiences of communication, advance care planning and palliative care. I then delivered a workshop on communication and personalised care later on in the day at this same event.

Date: Friday 5th April 2019

Location: Ambassadors Hotel, Euston

29.03.19 - CYPMeFirst Communication Champions Event

Topic:

I delivered a talk called “Conquering Difficult Conversations” on communication, difficult conversations, giving the right information at the right time, supporting parents, talking to children about death and dying and even more so, helping young people talk about their illness, condition, prognosis and about death (and the importance of peer support) and my experiences of communication, end of life conversations and facing death and dying.

Date: Friday 29th March 2019

Location: South London

19.03.19 - Personalised Care and Helplines Event

Topic:

I delivered a talk on my experiences of personalised care, Personal Health Budgets and my use of helplines over the years.

Date: Tuesday 19th March 2019

Location: London

14.03.19 - Personal Health Budget Quality Improvement Workshop

Topic:

I delivered a talk on my experiences of Personal Health Budgets and wider personalised care to a room full of professionals working in Continuing Healthcare and Personal Health Budgets.

Date: Thursday 14th March 2019

Location: Crawley/Gatwick

11.03.19 - QNI/NHS England Personalised Care Event

Topic:

I spoke about my experiences of personalised care including shared decision making, Personal Health Budgets, personalised care and support planning, supported self management, patient activation, and my experiences as a patient and as a person with a complex, life-limiting illness.

Date: Monday 11th March 2019

Location: East Sussex National Hotel, Golf Resort & Spa, Uckfield

08.02.19 - King George's Hospital End Of Life Conference

Topic:

I delivered a speech about communication, difficult conversations, advance care (end of life) planning, my experiences as a patient with a life-limiting illness and how palliative care has transformed my life.

Date: Friday 8th February 2019

Location: King George’s Hospital, Ilford

18.01.19 - Care of Dying Adults in the Last Days of Life

Topic:

I delivered a speech on the care of adults in the last days of life, my experiences as a life-limited palliative care patient, advance care planning, difficult conversations, empowering patients, supporting family carers, the importance of care/treatment escalation plans in addition to a personalised care and support plan and an advance care plan, personalising end of life care, Personal Health Budgets and end of life care, and the NICE End of Life Care Quality Standards, End of Life Choice Commitment, Ambitions for End of Life Care and Carer’s Assessments.

Date: Friday 18th January 2019

Location: De Vere West One, London

17.01.19 - Personal Health Budget Quality Improvement Workshop

Topic:

I delivered a talk on my experiences of Personal Health Budgets and wider personalised care to a room full of professionals working in Continuing Healthcare and Personal Health Budgets.

Date: Thursday 17th January 2019

Location: Cambridge

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2018 Speeches

11.12.18 - Havering East Rotary Club

Topic:

I shared my story, my experiences and about my work, and also talked about Molly, her training and Dog A.I.D. (Assistance in Disability).

Date: Tuesday 11th December 2018

Location: Upminster Golf Club

04.10.18 - Redbridge End Of Life Conference

Topic:

I spoke about my experiences as a palliative care patient, sharing my story, about advance care planning and a bit about being a young person and transition to adulthood.

Date: Tuesday 4th December 2018

Location: Ilford

03.12.18 - Caldicott In End Of Life Conference

Topic:

I shared my story in brief and then spoke about information sharing especially for palliative/end of life patients, how myself and my mother have had to be our own information-sharers as there’s often little information sharing amongst professionals/hospitals/services/systems, about how SystmOne has improved this locally, information sharing being essential for advance care plans, the various care plans I have, about Electronic Palliative Care Co-ordination Systems (EPaCCS) and how vital these are, about having conversations early, patients being able to give informed consent about how their data is shared and used, empowering patients and carers, multi-agency working, and also about my Personal Health Budget, about Carer’s Assessments, and the power professional’s have to change lives.

Date: Monday 3rd December 2018

Location: De Vere West One, London

27.11.18 - Hospice UK Conference

Topic:

I spoke about sexuality for young people for life-limiting conditions and the work of the Open University Sexuality Alliance in the session “4.1 Living with life limiting illness: children and young people” with Dr Susan Madge, Consultant Nurse and Associate Director of the Adult CF Centre Royal Brompton Hospital; and Sacha Langton-Gilks, bereaved parent, teacher and writer.

Date: Tuesday 27th November 2018

(Whole conference was Monday 26th-Wednesday 28th November)

Location: Telford International Centre

16.11.18 - Sexuality Citizenship Day

Topic:

I shared the work of the Open University Sexuality Alliance.

Date: Friday 16th November 2018

Location: YHA, St Pancras, London

14.11.19 - NHS Peer Leadership Academy

Topic:

I spoke about my experiences of personalised care and Personal Health Budgets on the final day of the Autumn 2018 NHS Peer Leadership Academy.

Date: Wednesday 14th November 2018

Location: Burleigh Court, Loughborough University

13.10.18 - Muscular Dystrophy UK Conference

Topic:

I spoke and co-hosted a session in the Young Person’s Conference at the Muscular Dystrophy Conference on “Living The Life You Want”

Date: Saturday 13th October 2018

Location: Hilton London Tower Bridge

12.10.18 - IHUG Celebration, Ipswich Hospital

Topic:

I spoke about patient involvement, my work as a patient leader, my achievements and about change-making, to inspire and empower the members.

Date: Friday 12th October 2018

Location: Ipswich Hospital (ESNEFT)

21.09.18 - Honorary Degree, Open University, Acceptance Speech

Topic:

During the graduation ceremony in which I received my Honorary Degree of Master of the University from the Open University, I gave a short acceptance speech.

Date: Friday 21st September 2018

Location: The Barbican Centre

02.07.18 - Havering End Of Life Conference

Topic:

I shared my story, my experiences, and talked about palliative care from the patient perspective, my experiences as a palliative young adult, transitioning into adult services, advance care planning and how palliative care has transformed my life.

Date: Monday 2nd July 2018

Location: Maylands Golf Club

25.06.18 - Lancet Palliative Care Report Launch at the Global Health APPG

Topic:

I spoke about my experiences of palliative care and my privilege of living in the UK with our universal health coverage package (the NHS), free access to palliative care and hospice services, access to life-sustaining interventions to meet my complex medical needs, and access to symptom-relieving medications in formulations I can take (since intestinal failure means oral medications are futile).

Date: Monday 25th June 2018

Location: House of Lords, Palace of Westminster

19.06.18 - St Giles Hospice "Social Media in Palliative Care" Conference

Topic:

I shared my story in brief, living with a life-limiting illness, learning I am going to die young and the impact on me and my family, my digital legacy plans – what they are, and why they’re important to me (including my legacy blogs, social media posts, my social media will, a legacy “documentary” about my life and live-streaming my funeral to Facebook), how I was creating my digital legacy before I knew what a digital legacy was, my work with the Digital Legacy Association, how crucial a role social media plays in my life and the lives of people with complex illnesses/disabilities, how social media accounts become digital grave sites where people can mourn those they have lost – and even mentioned Molly’s very successful Facebook blog!

Date: Tuesday 19th June 2018

Location: St Giles Hospice, Lichfield

23.05.18 - Reform Think Tank Conference

Topic:

I spoke about my experiences of personalised care including shared decision making and Personal Health Budgets, alongside James Sanderson, Director of the Personalised Care Group at NHS England, and Baroness Cumberlege.

Date: Wednesday 23rd May 2018

Location: One Great George Street, London

10.05.18 - Sexuality Policy Day, Keech Hospice

Topic:

I spoke about my experiences as a young person with a life-limiting illness, about sexuality for young people with such conditions, around policy considerations, our rights, needs and wishes and how we can best be supported and to create a supportive and enabling sexuality policy.

Date: Thursday 10th May 2018

Location: Keech Hospice, Luton

02.05.19 - North London Transition Taskforce Regional Action Group Meeting

Topic:

I spoke about patient leadership, including for palliative care patients, how I founded the international palliative care patient and carer network, Palliative Care Voices, and about involving patients in all levels of organisations, hospices, advocacy work and so on.

Date: Wednesday 2nd May 2018

Location: Marie Curie Hospice Hampstead

16.04.18 - Commonwealth Disabled Youth Roundtable Event, House of Lords

Topic:

I gave a speech at this Commonwealth Disabled Youth Roundtable Event, organised by Include Me TOO and chaired by Baroness Uddin, on the Sustainable Development Goal (SDG) 11: Make cities and human settlements inclusive, safe, resilient and sustainable including accessible and inclusive transport and public spaces. I talked about how essential accessibility is, how equality is vital and equality of access to buildings and cities is part of equality, about how equality is not giving special treatment but making adjustments to put us on an equal footing to others, my experiences of a lack of accessibility and how it is so often an afterthought, I talked about equality extends to accessible toilets and the vitally important Changing Places toilets, and how we need to make sure society is inclusive and accessible for all – and how this positively impacts everyone, not just disabled people.

Date: Monday 16th April 2018

Location: House of Lords

08.02.18 - Hospice UK People in Partnership Forum (Palliative Care Voices speech)

Topic:

I spoke about the Palliative Care Voices network that I founded, an international palliative care patient and carer advocacy network, to support and influence the involvement of direct stakeholders in palliative care advocacy, services and organisations, locally, regionally, nationally and internationally.

Date: Thursday 8th February 2018

Location: Linklaters

07.02.18 - APPG on Children Who Need Palliative Care

Topic:

I gave evidence to the APPG on Children Who Need Palliative Care, talking about my experiences as a young person who needs and benefits from palliative care, including transiting to adult services, young adult hospices, home care packages, lack of multi-agency working, society not understanding this new generation of young people who previously would not have survived childhood and the difficulties I/we face.

Date: Wednesday 7th February 2018

Location: House of Commons

23.01.18 - NHS70 Webinar

Topic:

I spoke on my experiences in the NHS70 webinar, as a patient of the NHS with a complex life-limiting condition who owes her life to the NHS and the professionals, teams and services within it.

Date: Tuesday 23rd January 2018

Location: Virtual/online

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2017 Speeches

19.12.17 - East of England Transition Taskforce Regional Action Group Meeting

Topic:

I spoke about patient leadership, youth involvement, involving palliative care patients in hospices, services, campaigns and advocacy efforts and my experiences as a patient leader and palliative care advocate.

Date: Tuesday 19th December 2017

Location: East Anglia Children’s Hospice (EACH) Milton, Cambridge

23.11.17 - Patient Leadership Workshop Event - Health Education England & EAHSN

Topic:

My experiences as a patient leader and the involvement of patient leaders in the NHS and social care

Date: Thursday 23rd November 2017

Location: Bury St Edmund’s

10.11.19 - Queen's Nursing Institute (QNI) Transition of Care Conference

Topic:

I spoke alongside Kath Evans (Experience of Care Lead, NHS England) and Amy Frounks on young people’s experiences, useful resources, our ideas for the future, previous work, transition to adult services, empathy, role modelling, and seldom heard voices (do not call them hard to reach!).

Date: Friday 10th November 2017

Location: Royal College of GPs, London

25.10.17 - Leigh Lion's Speech

Topic:

I spoke about Molly and her journey from pet to Assistance Dog and we gave a much-enjoyed demonstration of a variety of her tasks.

Date: Wednesday 25th October 2017

Location: Leigh-on-Sea

13.09.17 - Voiceability/Total Voice Northamptonshire

Topic:

I spoke on my personal experiences of advocacy and the tremendous impact advocates have had on my life, the crucial role they’ve played in me being able to live my life – the life I choose – and secure the care and support I need to do so, and saying to all the advocates to not underestimate the impact they have on peoples’ lives.

Date: Wednesday 13th September 2019

Location: Northampton

07.09.17 - RISE4Disability Maidstone

Topic:

I spoke and gave a demonstration with Molly of many of her tasks and about her journey from pet to Assistance Dog and about Dog Assistance in Disability (Dog A.I.D.)

Date: Thursday 7th September 2017

Location: Maidstone

14.07.17 - NCPC the Big Conversation

Topic:

Via pre-recorded video (due to a hospital admission) my mum and I spoke about our experiences as patient and carer, parent and daughter, around my life-limiting condition, palliative and hospice care, and the support for carers – or lack thereof.

Date: Friday 14th July 2017

Location: (appeared via pre-recorded video)

21.03.17 - Rayleigh Trefoil Guild

Topic:

I gave a full speech about Molly and our lives together, Molly’s tasks and how she has transformed my life, and then gave a demonstration of her tasks.

Date: 21st March 2017

Location: Rayleigh

22.02.17 - RISE4Disability East

Topic:

I spoke about my life, my experiences and my work, and then I spoke and gave a demonstration with Molly of many of her tasks and about her journey from pet to Assistance Dog and about Dog Assistance in Disability (Dog A.I.D.)

Date: Wednesday 22nd February 2017

Location: Peterborough

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2016 Speeches

20.10.16 - Rayleigh Trefoil Guild

Topic:

I spoke about my experiences and my work as well as a bit about Molly and Dog A.I.D.

Date: 2oth September 2016

Location: Rayleigh

13.09.16 - National Advocacy Conference

Topic:

Title: “Be Your Client’s Hero”. I spoke about my experiences of advocacy, how advocacy and my advocates have transformed my life, and how essential advocacy has been as part of my life and my illness in getting the care and services I require.

Date: Thursday 13th October 2016

Location: National Exhibition Centre (NEC), Birmingham

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2015 Speeches

01.12.15 - NHS Takeover Event

Topic:

I co-chaired and spoke about my experiences as a young person.

Date: 1st December 2015

Location: Cabinet Office, London

09.10.15 - P.O.R.T. Charity Patient Information Day

Topic:

I shared my story and my experiences of living with Chronic Intestinal Pseudo Obstruction.

Date: 9th October 2015

Location: Wingate Institute of Neurogastroenterology, Whitechapel, London

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2014 Speeches

22.11.14 - The J's Hospice Ball

Topic:

I gave a speech about my experiences of being a young person with a life-limiting condition, the support the J’s have given me and what I’ve been able to achieve with their help.

Date: 22nd November 2014

Location: Stanstead Airport

20.11.14 - Leaders of Care Event

Topic:

I delivered a speech alongside my palliative care nurse, Bev Barclay, about being a young person with a life-limiting condition, palliative care and particularly about transition.

Date: 20th November 2014

Location: London

19.11.14 - Children's Health and Wellbeing Partnership

Topic:

I spoke about my experiences as a young person with a life-limiting condition, transition, young people’s involvement and palliative care.

Date: 19th November 2014

Location: London

10.10.14 - Children and Young People's Health Outcomes Forum

Topic:

I talked about my experiences as a young person with a life-limiting condition, transition to adulthood and palliative care.

Date: Wednesday 10th September 2014

Location: Skipton House

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2013 Speeches

19.11.13 - Together for Short Lives House of Commons Reception

Topic:

I spoke about my experiences as a life-limited young person, of palliative care and of the transition to adult services and adulthood more broadly.

Date: Tuesday 19th November 2013

Location: Stranger’s Dining Room, House of Commons

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