The National Heart Patient Charity. Empowering cardiovascular groups to improve awareness, education, prevention and treatment options

Transcription

1 The National Heart Patient Charity Empowering cardiovascular groups to improve awareness, education, prevention and treatment options Registered Charity No WHO S WHO BOARD OF TRUSTEES January

2 Arthur Kenneth Timmis MBE JP ACIE Cardiovascular Care Partnership (UK) formerly Heart Care Partnership (UK) October present President Treasurer until 1 April 2008 Trustee British Cardiovascular Society 2008-present Elections Committee 2008-present BCS Council 2008-present RCP/BCS Joint Specialty Committee for Cardiology 2008-present Guidelines and Practice Committee (Amalgamated 2008-present Clinical Standards Committee) in 2010 British Cardiovascular Intervention Society 2009-present Patient representative on Clinical Standards Group British Heart Foundation 2004-present Hearty Voices Graduate and member of committee to organise membership records. Department of Health 2009-present Heart Disease Programme Board CHD Primary Care and Heart Failure Sub Programme Board (now defunct) Wolverhampton Coronary Aftercare support Group (Patient and carer charity, based at the Coronary Care Unit, New Cross Hospital, Wolverhampton from Following a move, has become the sole charity for Wolverhampton Heart and Lung Centre since October 2004) April 1991 present Chairman 1990 present Member Wolverhampton Heart and Lung Centre, New Cross Hospital Oct 2004-present 2005-present 2005-present 2004-present 1993-present Member - Charitable Funds Committee Patient Representative Primary PCI Group Patient Representative - Cardiovascular Research Group Patient Friend (one to one counselling of patients) Daily Tea Rounds (Cardiology, Stroke, ICCU & Cardiothoracic Wards) Wolverhampton CVD LIT (merged with Programme Board in 2010) 2000-present Patient Representative 2

3 Wolverhampton PCT CVD Programme Board 2008-present Patient representative Black Country Cardiovascular Network 2008 present 2002-present 2002-present 2004-present 2005-present Patient Representative at Clinical Leads Meetings Patient Lead for Wolverhampton on Network Board Patient Representative on Clinical Cardiac and Governance Advisory Group Member - Cardiovascular Steering Group Helper on Annual Stroke Awareness Day West Midlands Cardiac Surgery and Tertiary Cardiology Steering Group 2003-present Patient Representative Cardio & Vascular Coalition (CVC) 2007-present Patient Representative on Steering Group and Working Group Royal College of Physicians Patient and Carer Network Board 2008-present RCP/BCS Joint Specialty Committee for Cardiology NHS Evidence 2009-present Patient Representative Arrhythmia Alliance 2006-present Volunteer Other Ken retired after spending 35 years working for Barclays bank. Is also a Church Treasurer and Boys' Brigade District Treasurer, with over 45 years experience at each, and so has much experience in running charity accounts. Ken suffered a heart attack on 5 th January 1990 and, in response to the care received from Doctors and Nurses at New Cross Hospital, Wolverhampton, joined the local Coronary Support Group in order to repay the debt he owed to them. He became Chairman of the Group and in January 2000 received an MBE from the Queen in recognition of his services to the Coronary care Unit. He has since expanded his voluntary work for heart patients and their carers both regionally and nationally. His Support Group received The Queen s Award for Voluntary Service in 2008, the highest accolade for a Group of its kind and equivalent to an MBE. 3

4 Suzie Hutchinson Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) Treasurer since April 2008 June 2013 Trustee since September 2004 British Heart Foundation Part of the CVC Congenital Heart Disease Working Group, which is part of the BHF working team, looking specifically into the care of children with Congenital Heart Disease. Department of Health Currently, part of the services framework team working with all Congenital Cardiac Groups to take forward the recommendations for change raised by the Kennedy and Munro reports (post The Bristol Inquiry). The Team are working with Roger Boyle, Sue Dodds and Sheila Shribman to provide a user voice during the review of Paediatric Cardiac services and the agenda for change within Paediatric care services. Little Hearts Matter (Little Hearts Matter is a national charity that offers support and information to children, and their families affected by single ventricle heart disorders. From the time of diagnosis, treatment and life at home the charity works to support and empower families. The charity also works to raise awareness of the needs of these children and their families. The charity also works with the many families who have lost a child to these complex disorders). April 2003 Present Chief Executive British Congenital Cardiac Association An associate member of the British Congenital Cardiac Association (BCCA) and represent the voice of the user, or provide the voice of the user and carers, at a number of national and regional meetings. Other Originally qualified as an adult and then a children s nurse working within the health service for over 20 years. Trained at both the Royal London and Great Ormond Street Hospitals. Spending over 15 years as part of the cardiac care team at Birmingham s Children s Hospital; the last 9 years of which were as the cardiac liaison sister with a special interest in the needs of children, and their parents, diagnosed with non-correctable heart disorders. Married to a surgeon and has two children. Her husband has helped her to understand the pressures within the health service and her children have helped her understand a parents need to protect. 4

5 Felicity Astin PhD, MSc, BSc(Hons) RN Service Users & Carers have a vital role in shaping NHS services, informing health services research and supporting the education of health professionals. Felicity joined Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) Co-opted member from February 2010 To become trustee from June 2010 British Association of Nurses in Cardiac Care Member; 2004 to current Council of Cardiac Nurses & Allied Professionals Member of Education Committee developing curriculum for post registration nurses across Europe; 2009 to current. NHS Improvement-Heart Member of working group involved in developing national guidance about information provision for service users and carers treated with primary angioplasty; 2010 to current. Editorial Board Member; British Journal of Cardiovascular Nursing 2008-current CHD Services Leeds Member of working group commissioning CHD services in Leeds; Honorary Lecturer Monash University, Australia; 2003-current. CCP UK to make this happen. Felicity has worked as a clinical nurse specialist, lecturer and researcher during her career. She is currently Associate Professor in Cardiovascular Care in the School of Healthcare at the University of Leeds. She works closely with NHS partners, patients and carers with the shared goal of improving cardiac care services and reducing health inequalities. She has successfully attracted funding from the National Institute of Health Research to support several collaborative projects. She has a particular interest in angioplasty and has conducted research both in Australia and UK to explore patient s patterns of recovery after this treatment. This work has informed the development of patient centred health information resources for use in clinical practice. Felicity also plays an active role in the education of undergraduate and post graduate students at the University of Leeds. She incorporates findings from project work into teaching sessions to give students a real insight into patients and carers experiences of cardiac services. 5

6 Liz Clark My involvement with CVD work was instigated by a Consultant Cardiologist who invited me to join the Peninsula Cardiac Managed Clinical Network, and through my network contacts I got involved with Heart Care Partnership (UK). Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) 2006 present Trustee British Cardiovascular Society 2008 present Working Group on fitness to fly guidelines for patients with heart disease taking flights. Peninsula Cardiac Network (Devon and Cornwall) 2003 present Patient Co-ordinator Peninsula Network Management Group Chairman, Peninsula Cardiac Network Patient & Public Group Patient Representative - Cornwall Local Implementation Group 2007-present Patient Representative Peninsula Commissioning Group North and East Devon Local Implementation Group Heart Failure CoNNeCT Steering Group Cornwall Patient Representative - Cornwall Local Implementation Group Heart Failure Steering Group Devon GPSi Steering Group Service Improvement Managers Group East Devon Patient Transport meeting Care Pathway North Devon Cardiac Rehab Focus Group Healthcare Commission 2006 Consultation group on patient involvement Focus group meetings 2005 Hospital audit Department of Health 2009-present Heart Disease Programme Board 2006-present NSF Regional events CHD Primary Care and Heart Failure Sub Programme Board (now defunct) Black Country Network Patient visitor Manchester Network 2007 Stroke/Cardiac Conference - delegate National Institute for Health and Clinical Excellence 2007 Health Technology Appraisal meeting 2007-present Guideline Development Group member South West Strategic Health Authority Primary Angioplasty Panel Member 6

7 Dr E Jane Flint Bridgewater BSc MD FRCP Consultant Cardiologist (Semi-retired 2011), Lead Consultant Cardiologist Dudley Group NHS FT Postgraduate Clinical Tutor Chair and subsequently Trustee Dudley Clinical Education Centre Council Charity Medical Director Action Heart Honorary Senior Lecturer University of Birmingham Senior Academy Tutor for Medical School, Dudley Academy. Black Country Cardiovascular Network Clinical Director Chair Clinical Cardiac and Governance group Deputy Chair Network Board Chair Clinical Pathways into Heart and Lung Centre, Wolverhampton Champion for patient representative on all Network groups and PPI Strategy Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) Founder Member on behalf of British Cardiovascular Society Council Steering Group Chair Founding Trustee 2003 to date Clinical Lead 2006 to date Co-ordinated HCP (UK) Core Grant submission enabling National Conference , Enabling the Patient Voice 2012 Lead Author: What the patient wants to know, and how they wish to be told OPD Booklet. British Cardiovascular Society Elected Council Representative for Women in Cardiology Chair Working Group for Women s Heart Health 2006 to date Elected DGH Council Member Membership of Professional Standards and Peer Review , Fifth Joint Report 2002, Workforce , Women in Cardiology Working Group , Training and Manpower Committee , Technicians Committee , District Working Party British Heart Foundation Professional Trustee 2006 to date Member Prevention and Care Committee 2007 to date Previous membership of Cardiac Care and Cardiac Rehabilitation and Secondary Prevention Committees Royal College of Physicians DGH member Cardiology Committee

8 Department of Health Member External Reference Group for National Service Framework for CHD as President of British Association for Cardiac Rehabilitation National Clinical Advisor for Cardiac Rehabilitation to NHS Improvement (Heart), (leading 4 Annual Surveys of Cardiac Rehabilitation Development across the English Cardiovascular Networks ) Member CVD Outcomes Strategy Group 2012 British Association for Cardiac Rehabilitation Steering group member 1992 Council member 1993 President Elect 1995 President (incorporating BCS Epidemiology, Prevention and Rehabilitation Committee 1999) Working Group for PbR tariff for Cardiac Rehabilitation as part of National Campaign for Cardiac Rehabilitation 2007 British Nuclear Cardiology Society Treasurer 1988 Chairperson 1990 Member Joint Professional Societies working Party for NICE Report on Myocardial Perfusion Scintigraphy Jane continues to be very active in her semi-retirement with all her special interests: reporting and teaching myocardial perfusion imaging (her MD sub-specialty); teaching medical students as a Senior Academy Tutor; Medical Director of Action Heart, Dudley, frontier Cardiac Prevention & Rehabilitation programme; leading British Cardiovascular Society s recommendations and progress statement for Women s Heart Health; developing Patient Empowerment as Founding Trustee and Clinical Lead of HCP (UK); Hon President HUGS (Dudley), founding Patient Education and Interprofessional Learning Grants from Cardiology & Education Centre Charity; Member Prevention & Care Committee and Professional Trustee of the British Heart Foundation.. 8

9 Anne Jolly Cardiovascular Care Partnership (UK,) formerly Heart Care Partnership (UK) Re-appointed as Secretary to Heart Care Partnership (UK), at the HCP (UK) Annual General Meeting, 30/11/2007 Trustee SADS UK Founder and Chair of the cardiac charity SADS UK, Sudden Arrhythmic Death Syndrome; a charity providing national annual conferences giving information and updates with regard conditions of the conduction system of the heart. Patient Support Seminars & Retreats assist those affected and by the donation of AEDs (Automated External Defibrillators) and cardiac equipment the charity aims to save lives. The charity played a significant role in the introduction of new Department of Health Guidelines, NSF Chapter 8, Arrhythmias and Sudden Cardiac Death. British Heart Foundation Steering Group British Heart Foundation Teen Website Heart Support Group affiliated member Department of Health Steering Group Sudden Cardiac Death Delivery Steering Group Pathologist/Coroner Interest Meetings Other National Accredited BACP Counsellor NCP Critical Incident Debriefer Trustee of the Genetic Interest Group (GIG) Steering group reviewing UK Cardiac Genetics Network - PHG Foundation (Foundation for Genomics and Population Health) Heart Rhythm UK Extraordinary Council Member (SADS UK fed into the position statement Clinical Indications for Genetic Testing in Familial Sudden Cardiac Death Syndromes: an HRUK Position Statement) Heart Rhythm Congress, SADS UK Conference, including overview of conditions, dilemma in diagnosing cardiac or neurological condition, possible genetic implications, prospect for new treatment, emergency services and defibrillation and the pathologists and coroner s perspective Victims Voice Bereavement liaison meetings for families to assist in improving services for the bereaved Ministry of Justice Responding to the coroners reform Medical Technology Group helping gain equity for patients in gaining access to medical technology Member of the International Alliance of Patient Organisations Member of the Arrhythmia Alliance Arrhythmia Awareness Week Partner 9

10 Other Regional PTHREE (Patient, Public and Professionals) Group, Essex Cardiac Network Arrhythmia Workstream Meetings, Essex Cardiac Network SADS UK annual Patient Support Seminars Other Anne set up the cardiac charity SADS UK after the sudden and inexplicable death of her 16 year old son Ashley Jolly. As well as working with a plethora of organisations in the UK to assist with the work of SADS UK, Anne works with SADS organisations overseas and hosted the 1 st International SADS Conference in 2002 at the Royal College of Physicians, London. 10

11 Trudie Lobban MBE Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) Trustee STARS (Syncope Trust And Reflex Anoxic Seizure) Present Founder & Chief Executive of STARS Member of STARS Medical Advisory Board Arrhythmia Alliance Present The Heart Rhythm Charity (Offers telephone/ support to all affected by syncope and cardiac arrhythmias on average number of enquiries received per year included 132,000 e mails and 22,600 telephone calls). Founder & Trustee Member, A-A Executive Committee Chair of Arrhythmia Awareness Week (AAAW) Committee Founder & Chair of World Heart Rhythm Day (WHRD) STARS-US Present Founder and Chief Executive Atrial Fibrillation Association (AFA) 2007 Present Founder and Chief Executive 11

12 Heart Rhythm Congress (HRC) Present Founder & Chair British Cardiovascular Society (BCS) Council Member BCS Council member of VOICE (BHF CVD Committee) British Heart Foundation (BHF) Steering Group - BHF Arrhythmia Care Coordinator Steering Group - BHF Teen Site Council member of VOICE (CVD Committee) Department of Health (DoH) Member of HRMDC (Heart Rhythm Medical Device Committee) DoH Implementation Board Expert Group of NSF Chapter 8 on Arrhythmia & SCD Heart Rhythm UK (HRUK) formerly BPEG Council Member National Campaign for Cardiac Rehabilitation Committee Member Trudie Lobban has also contributed to medical papers and books as well as presenting at national and international meetings from Japan to USA and Norway to South Africa. She continues to provide 24/7 support and information to patients and their carers as the Helpline is switched through to her home evenings and weekends. Over a period of 16 years Trudie has personally spoken with hundreds of thousands of patients via the telephone and e mail. Trudie Lobban is recognised as a world expert representing patients and their carers as well as working closely with all those involved in the care and treatment of people affected by cardiac arrhythmias and sudden cardiac death. 12

13 Paul Willgoss MBE Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) Trustee since September 2005 Grown Up Congenital Heart Patients Association (GUCH) Co-opted member of the GUCH Patient Associations Patient Representative Group - main role is to provide liaison and networking with other charities and organisations with an interest in the care of GUCHs. Member, Management Committee of GUCH Patients Association Vice Chair for the last 6 years, successfully representing GUCH at a number of international conferences, participating as a mentor at Outward Bound courses for teenage GUCH s and has spoken on how to best to communicate with your cardiologist. Recent activities (2007): - Over the last year, has given presentations to medics, nurses and parents on life as a GUCH. - Worked with other groups of patients across Europe to start organising an effective European umbrella organisation (ECHG). - Organised the effective contribution to various NICE and learned society consultations ensuring that the voices of GUCHs are heard by decision makers. - Also set up the GUCH Walking Club, a social group of GUCH who walk in various parts of the country. The group also raised sponsorship this year by walking the Hadrian's Wall path, defying the expectations that many have of GUCHs. Children s Heart Federation present Trustee Civil Service Disability Network Founding Chair Represents the views of around 40,000 disabled civil servants and lectured at the National School for Government during the events supporting the European Year of the Disabled. Other Born with Fallot s Tetralogy in 1971, Paul had his first open heart surgery on his 4 th Birthday. Post-graduate qualification in Occupational Health. Member of the Royal Entomological Society and the Chartered Institute of Personnel and Development. 13

14 Julie Wootton Cardiovascular Care Partnership (UK), formerly Heart Care Partnership (UK) Trustee since August 2009 Max Appeal Founder and chair of trustees. Max Appeal is the national charity for families affected by 22q11.2 deletion. This is the most common of the rare disorders with an estimated incidence of 1 in 2,000 of the population, and approximately 75% of people with 22q11.2 deletion have congenital heart defects. Max Appeal is the largest parent-led organisation for this condition globally. Children s Heart Federation Trustee since 2002, chairman since CHF is the national umbrella organisation for all charities for children with heart defects. Currently there are 23 member organisations either condition specific or based around a paediatric cardiac unit. CHF is the patient representation for the NHS Safe and Sustainable review of paediatric cardiac surgery in England that is currently being undertaken. Other Organisations CCAD (Central Cardiac Audit database) steering group for paediatric congenital cardiac surgery outcomes (lay rep) Corience, pan European web based platform for information sharing on congenital heart disease ECHDO European Congenital Heart Disease Organisation VCFSEF - European network International 22q Foundation worldwide group Julie Wootton is leading the production of a national consensus document for the care and management of 22q11.2 deletion, and is a major contributor to the international consensus. She has collaborated with many research programmes such as the Cambridge University Intellectual Developmental Disabilities Research Group's work on the Life-long Health and Well Being of People with syndromic based neurocognitive disabilities, which it is hoped will be extended to form a formal network of 11 charities. She has also contributed to the cardiac nurses teaching book "Cardiothoracic Care for Children and Young People A Multidisciplinary Approach. Julie Wootton is recognised as being an expert on the various aspects of the 22q11.2 deletion, being the principle author of the Max Appeal Handbook for the condition. She has spoken at many national and international meetings, and parliamentary events, and personally supports families as she mans the Max Appeal telephone helpline, enquiries and Facebook profile saw the first International Scientific Meeting in the UK for 22q11.2 deletion at the Ricoh Arena in Coventry. An international panel of experts has been pulled together by Julie Wootton for the two day programme and 65 international speakers with back to back scientific and family 14

15 programmes. Julie is part of the organising committee for the International Foundation s 2012 Conference in Florida, where she will also speak. Julie Wootton would like people with congenital heart disease to be treated appropriately to their specific needs, and as they age being able to access the network of services available to people with coronary/acquired conditions, including rehabilitation and physiotherapy programmes. Julie has been married to Paul for 20 wonderful (!?!) years and has two delightful children, Georgia aged 18 and Archie aged 12. Her first son, Max, died of septicaemia in 1999 at the age of four months. This was due to complications arising from 22q11.2 deletion, those being complex congenital heart defects and a poor immune system. Following his death she established Max Appeal and so became embroiled full-time in the world of 22q11.2 deletion and congenital heart disease! 15