empowering cardiovascular groups to improve awareness ... · cardio & vascular coalition (cvc)...

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The National Heart Patient Charity

Empowering cardiovascular groups to improve awareness, education, prevention and treatment options

Registered charity no 1131564

WHO’S WHO

BOARD OF TRUSTEES

June 2010

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Heart Care Partnership (UK) was set up in 2003 in response to

a request from the British Cardiovascular Society, to draw

together users that could represent patients and carers within

the process for cardiac service improvement.

Heart Care Partnership (UK) embraces all organisations which

support patients and carers, specifically those with

cardiovascular disease and associated conditions.

Our aims are:

To bring together groups supporting heart patients,

their carers and other family members to share good

practice and streamline care pathways.

To raise awareness of heart conditions.

To advance public education about the problems

experienced by heart patients and their families.

To develop patient empowerment.

To work to improve the treatment of heart disease

and, where possible, its prevention.

Have your say

Communication

Patient empowerment

Over 40 groups are members of HCP(UK)

Membership is free to support groups and individuals.

For further information telephone 020 7383 3887, email [email protected]

or visit the website at www.bcs.com and click on ‘affiliates’

mailto:[email protected]

http://www.bcs.com/

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Arthur Kenneth Timmis MBE JP LCIE

Heart Care Partnership (UK)

2008-present 2007-2008 2005-2008 2004-present

President President Elect Treasurer Trustee

British Cardiovascular Society 2005-2007 Clinical Practice Sub Committee (now defunct) 2005-2007 Workforce Sub Committee (now defunct) 2008-present BCS Council 2008-present BCS Elections Committee 2008-present RCP/BCS Joint Specialty Committee for Cardiology 2008-present Clinical Guidelines and Practice Committee

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 2010-present Cardiac Rehabilitation Commissioning Pack Reference Group 2009-present Heart Disease Advisory Group 2006-2009 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 1985 – 2004. 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 Member - Charitable Funds Committee 2005-present Patient Representative – Primary PCI Group 2005-present Patient Representative - Cardiovascular Research Group 2004-present Patient Friend (one to one counselling of patients) 1993-present Daily Tea Rounds (Cardiology, Stroke, ICCU & Cardiothoracic Wards)

Wolverhampton CVD LIT 2000-2010 Patient Representative

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Wolverhampton PCT CVD Programme Board 2009-present Patient representative

Black Country Cardiovascular Network 2008–present Patient Representative at Clinical Leads Meetings 2002-present Patient Lead for Wolverhampton on Network Board 2002-present Patient Representative on Clinical Cardiac and Governance Advisory Group 2004-present Member - Cardiovascular Steering Group 2005-present Helper on Annual Stroke Awareness Day

West Midlands Cardiac Surgery and Tertiary Cardiology Steering Group 2003-present Patient Representative

CVD Specialist Library Steering Group

2008-present Patient Representative

Cardio & Vascular Coalition (CVC) 2007-present Patient Representative on Steering Group and Working Group

Royal College of Physicians

2007-present 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

The UK Transcatheter Aortic Valve Implementation (UK TAVI) Trial

2009 – present Patient Representative

Other

Ken suffered a heart attack on 5th 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.

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Suzie Hutchinson

Heart Care Partnership (UK) Treasurer since April 2008 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.

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Carol Elizabeth Reilly

EN, DEN, RGN, DN, DIP. in Community Health Studies FEATC, PGCE Cert. Ed. Po CET Diploma in Management Level 5

I am involved in HCP (UK) because I believe patients and carers can make a difference to the NHS. I wanted to be part of an organisation that can lead the way in this field to drive government policy forward.


Trustee since September 2004 Appointed as Secretary August 2009

Black Country Cardiovascular Network

20th August 2007 to date Network Manager

To lead the development and implementation of long-term cardiovascular disease and primary care strategies and take responsibility for developing related policies for the Black Country Cardiovascular Network. Ensuring these strategies are in line with national guidance and local needs and are responsive to the needs of patients and carers in line with patient led NHS. Review these regularly to respond to changes and uncertainty.

To work in partnership with the British Cardiovascular Society, British Heart Foundation, Department of Health and the Stroke Association.

To act as Network Cardiovascular and Primary Care Lead, developing and implementing strategies and policies in line with a Patient led NHS, ensuring inclusion of all the PCTs and Practice Based Commissioners within the Network

To gain corporate agreement across normal organisational boundaries, to ensure equitable implementation of relevant national guidance

To provide expert advice to all primary care, voluntary and private sector organisations in the Network on implementation of relevant national strategies e.g. National Service Framework for CHD, National Stroke Strategy, NSF for Older Persons

To provide management leadership to the Network Standard and Cross Cutting Groups e.g. Cardiovascular Steering Group, to ensure work plans, portfolios and standards are developed to comply with National standards

To interpret overall health service policy and strategies in order to establish goals and standards. To translate policy into network service developments

To deputise for the Network Director including taking a wider corporate role for specific projects or duties where appropriate professional and/or management intervention is required across the Network

To represent the Black Country Cardiovascular Network at national events and in national groups, as appropriate

To be an executive member of the Cardiovascular Network Board January 2005 to August 2007 Service Improvement Lead, Black Country Cardiac Network

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February 2001 to January 2005 Acting Programme Manager, Black Country Cardiac Network

Walsall Hospice Trustee December 2005 to February 2010

University of Wolverhampton Honorary Research Fellow since September 2007

National Health Service Employed by the NHS since 13th May 1980 September 1997 to January 2001 Continuing Health Care Coordinator, Cardiff and Vale NHS

Trust June 1984 to August 1997 RGN, District Nursing Sister, Cardiff and Vale NHS Trust

November 1996 to February 1997 undertook a 3 month secondment creating the Continuing Care Coordinator Role.

April 1991 to December 1993 RGN, District Nurse, Cardiff and Vale NHS Trust February 1991 to April 1991 RGN, Day Unit/Out-Patients, Department, Rhydlafar Hospital January 1990 to February 1991 Student Nurse EN-RGN, Conversion Course June 1984 to January 1990 District Enrolled Nurse, Barry June 1982 to June 1984 Enrolled Nurse, Children‟s Ear Nose and Throat Hospital,

South Glamorgan Health Authority May 1980 to June 1982 Pupil Nurse, Charles Frear, School of Nursing, Leicester.

Personal Church and choir member, steward and council representative Tangent member and president 2005/2006 Rotary member from October 2008, International chair 2009/2010, Junior-Vice President and Community and Vocational Services chair 2010/2011 Rotary District Member since October 2009

Rotary Group Study Exchange Team Leader 2010/2011

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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).


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 2005-2007 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


2009-present Heart Disease Programme Board 2006-present NSF Regional events 2006 – 2009 CHD Primary Care and Heart Failure Sub Programme Board (now defunct)

Black Country Network

2006 – 2007 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

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Peter Diamond


2003-present Founding Trustee 2008-present HCP (UK) representative on THRIVE – gardening for disabled people


2005-present Member, Heart Health Advisory Board 2002-2008 Member, Patient Advisory Group – Head Office 2001 Organiser of meetings in 18 N.W Heart Support Groups 1995-present Committee Member, Chester Branch

Cheshire & Merseyside Cardiac Network

2008-present Implementing stroke strategy Patient Representative 2008-present N.W Cardiac Research Programme – What do patients want in cardiac surgery? 2007-present N.I.C.E Expert Patient Representative – assessment of Altepace 2004-present C.H.D Patient Representative -present RCP/BCS Joint Specialty Committee for Cardiology 2008 Organising committee for patients‟ away day

Chester Heart Support Group

1996-2005 Chairman 1989-present Founder member

Countess of Chester Hospital

Member of Heartbeat CCU Building Appeal (£980,000 in 8 months) 1995-1999 Patient Representative Health Improvement Committee 1994-present Patient Representative Cardiac Rehabilitation Committee

West Cheshire PCT

1995-present C.H.D, L.I.T Committee Patient Representative

Wirral PCT

1999 C.H.D, L.I.T Committee Patient Representative

Health Care Commission

2005 National C.H.D Audit – 3 N.W Hospitals – Expert Patient representation

Other

1983-1986 Consultant Scientist, Kuwait Institute for Scientific Research 1948-1983 Senior Research Scientist, Shell Research Ltd

Peter had a triple by-pass operation in 1990. He has expanded his voluntary work for heart patients and their carers both regionally and nationally.

Sailing Coach for British Association for Sports for the Disabled Sailing Coach, Seamanship Foundation, Sailing for the Blind and Visually Impaired

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Dr E Jane Flint BSc MD FRCP

Lead Consultant Cardiologist Dudley Group of Hospitals 1988 to date Postgraduate Clinical Tutor 1998-2004 Chair and subsequently Trustee Dudley Clinical Education Centre Council Charity Medical Director Action Heart

Black Country Cardiovascular Network Clinical Director 2003-2008 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


Founder Member on behalf of British Cardiovascular Society Council Steering Group Chair 2002-2003 Founding Trustee 2003 to date Clinical Lead 2006 to date

British Cardiovascular Society Elected Council Representative for Women in Cardiology 2005-2009 Chair Working Group for Women‟s Heart Health 2006 to date Elected DGH Council Member 2000-2004 Membership of Professional Standards and Peer Review 2001-2004, Fifth Joint Report 2002, Workforce 2003-2004, Women in Cardiology Working Group 2003-2004, Training and Manpower Committee 1991-1999, Technicians‟ Committee 1991-1995, District Working Party 1992-1994.

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


DGH member Cardiology Committee 1998-2002


Member External Reference Group for National Service Framework for CHD 1998-2000 as President of British Association for Cardiac Rehabilitation National Clinical Advisor for Cardiac Rehabilitation to NHS Improvement (Heart), 2008 to present

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British Association for Cardiac Rehabilitation Steering group member 1992 Council member 1993 President Elect 1995 President 1997-1999 (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 2002-2003

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David H. Geldard MBE


2004-2008 Past President

British Cardiovascular Society

2007-2009 BHF/BCS led Coalition of Voluntary Groups to Champion CVD through the next decade

2006-2008 BCS Elections Committee 2004-2008 BCS Council 2004-2008 BCS Industry Liaison Committee 2004-2008 RCP/BCS Joint Specialty Committee for Cardiology


2007 Founding member of Cardio and Vascular Coalition 2003-present Graduate and promoter of BHF Hearty Voices Programme.

Graduate of Heart Improvement Programme, Stronger Voices Scheme


2009-2010 Invited senior stakeholder in DoH sponsored Ipsos MORI Review of the first ten years of the National Service Framework

2004-2009 Member, CVD Programme Board 2004-2005 Expert Patient Representative Witness and representative of the DoH Heart

Team to the DoH Mega Consultation on Choosing Health 2003-2006 Member, CHD Task Force 2002-2005 Trustee, pilot project “Choice in Cardiac Surgery”

Greater Manchester and Cheshire Cardiac Board

2001-2008 Board Member -present Patient representative lead on Network Board, its PPI Steering Group, and

the Patient and Professional Partnership Group -served on the Clinical Governance, Senior Appointments, PCI Development Groups - Member of pilot steering project BHF/GMCCB Promoting Hearty Voices within the SE Asian Population.


2004-2008 Member, Patient Involvement Panel 2004-2008 RCP/BCS Joint Specialty Committee for Cardiology

Bury and Rochdale Health Authority

1997-2001 Chairman 1995-2001 CHD Task Force, member

MINAP

2006-present MINAP Board, MINAP Patient Reference Group

NICOR

2008-present Patient representative and board member

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NIHCE

2008-present NIHCE expert patient member of Guideline Development Group for Acute Coronary Syndrome non STEMI

2008-2009 Expert patient witness for appraisal of Prasugrel 2007-2009 NIHCE, expert witness for assessment of Varenicline 2006-2009 NIHCE, Community Specialist, Programme Development Group for Smoking

Cessation

SUSTRANS

October 2007 SUSTRANS Award of Merit for Services to Promoting Public Health, Cycling and Walking within the Department of Health and National Health Service

Cardiac Rehabilitation

2009-present Expert patient witness on DoH select committee on a Commissioning Pack for Cardiac Rehabilitation

2008-2010 Parliamentary lobbyist with BHF for promotion of Cardiac Rehabilitation 2006-present Planning Group, Campaign for Cardiac Rehabilitation, NACR, BACR, BHF,

HCP (UK)

Health Care Commission/Society of Cardiothoracic Surgeons

2006-2007 Pilot project on ”Windows of Choice in Cardiac Surgery”

Society of Cardiothoracic Surgery in Great Britain and Ireland

2008-present Patient representative and executive board member

Other

2006-present North West Cardiac Research Programme, “What do patients want in Cardiac surgery?”

2001-present Delegate, chairman and speaker to various Conferences, Symposia and Planning Groups concerning CHD, CVD and Stroke

David retired from teaching with thirty years as an education officer in the Prison Service and a spell as a college faculty director.

Developed severe angina in 1994 and had a six way coronary artery bypass graft in 1995. Turned to cycling during cardiac rehabilitation and undertook two overseas fund-raising rides in Israel and Jordan and the London to Brighton nearer home, all in aid of the British Heart Foundation. Since then has cycled in Europe, India, USA, Indo China and South Africa with the Cyclists' Touring Club, and other tours with his own club.

Felt so much better and alive following surgery wanted to put something back into the system and in 1995 was invited to represent patient interests on the AHA Cardiac Task Force. Since those pioneering days, life has got more and more interesting.

David is a Past President and Trustee for thirty years of Littleborough RUFC; President of Trans Pennine Cycling Club; Trustee of Rochdale Ancient Parishes Educational Trust; Provincial Grand Charity Steward for the Masonic Province of East Lancashire, and Trustee of East Lancashire Masonic Charity 2004-2010.

1998, appointed Serving Brother in the Order of St John for the development of first aid training and family life education in the Prison Service and local community.

2008, appointed MBE for voluntary service to people with cardiovascular disease.

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Anne Jolly


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.


Steering Group British Heart Foundation Teen Website Heart Support Group affiliated member


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

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Trudie Lobban MBE

Heart Care Partnership (UK) Trustee

STARS (Syncope Trust And Reflex Anoxic Seizure) 1993 - Present Founder & Chief Executive of STARS Member of STARS Medical Advisory Board

Arrhythmia Alliance 2003 - Present The Heart Rhythm Charity (Offers telephone/e-mail 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 www.aaaw.org.uk Founder & Chair of World Heart Rhythm Day (WHRD) www.arrhythmiaalliance.org.uk

STARS-US 2006 - Present Founder and Chief Executive

Atrial Fibrillation Association (AFA) 2007 – Present Founder and Chief Executive

Heart Rhythm Congress (HRC) 2006 - 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

http://www.aaaw.org.uk/

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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

IAPO Congress Committee Member

NICE Guideline Committee for TLoC Member

MTG Member

STARS Medical Advisory Committee

Atrial Fibrillation Association Medical Advisory Committee

Arrhythmia Alliance Executive Committee

EHRA Committee member 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.

In 2009, Trudie was awarded the MBE in the Queen‟s Birthday Honours list for her work for STARS and services to healthcare.

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Paul Willgoss

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 2008- 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 4th Birthday. Post-graduate qualification in Occupational Health. Member of the Royal Entomological Society and the Chartered Institute of Personnel and Development. Co-opted members to be added:

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Julie Wooton

Heart Care Partnership (UK) Trustee since August 2009

Max Appeal Founding member and chair of trustees. Max Appeal supports families affected by DiGeorge syndrome, Velo-Cardio-Facial syndrome and 22q11.2 deletion. This is the most common of the rare disorders and about 75% of people have congenital heart defects. Max Appeal is the largest organisation for this group of conditions globally.

Children’s Heart Federation

Trustee since 2002, chairman since 2003. CHF is the national umbrella organisation for all charities for children with heart defects. Currently there are 23 member organisations either condition specific, such as single ventricle defects and cardiomyopathy, or based around a paediatric cardiac unit, such as Young at Heart (Birmingham Children‟s Hospital). 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 group for psycho-social aspects of life with congenital heart disease. VCFSEF - European network CDC - Congenital Heart Disease Coalition – new group being formed to cater for the lifelong needs of people with congenital heart disease. Julie Wootton is leading a national consensus for the care and management of 22q11.2 deletion patients 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 will be extended to form a formal network of 11 charities. She has also contributed to the cardiac nurses teaching book "Cardiothoraccic 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 which is distributed to parents and professionals at the main centres in the UK. She has spoken at many national and international meetings and personally supports families through the national helpline and web site. 2010 sees the first International Scientific Meeting in the UK for 22q11.2 deletion at Ricoh Arena in Coventry. An international panel of experts has been pulled together by Julie Wootton for the two day programme which will also overlap with a two day family programme.

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Felicity Astin

Heart Care Partnership (UK) Co-opted member from February 2010 To become trustee from June 2010

Felicity Astin has worked as a clinical nurse specialist, lecturer and researcher during her career. She has recently been promoted to Director of Research and Innovation in the School of Healthcare at Leeds University. 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 collaborative projects. She has a particular interest in angioplasty and has conducted research both in Australia and UK to explore patient‟s recovery after this treatment. This work has informed the development of „patient centred‟ health information resources for use in clinical practice. More recently Felicity joined an NHS Improvement-Heart working group. This group is developing national guidance about health information provision to assist clinicians developing primary angioplasty services. Felicity also plays an active role in the education of undergraduate and post graduate students at the University of Leeds. She uses findings from project work to give students a „real‟ insight into patients‟ and carers‟ experiences of cardiac services. As well as being on the Board of Trustees for HCP UK she also serves on the Education Committee of the Council of Cardiovascular Nurses and Allied Professionals with the remit of curriculum development for post-registration cardiac nurses in Europe. More locally she is involved on a working group redesigning cardiac services in Leeds.

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APPLICATION TO BECOME A MEMBER OF HEART CARE PARTNERSHIP (UK)

CHARITY NO 1131564

AFFILIATED TO THE BRITISH CARDIOVASCULAR SOCIETY

REPRESENTATIVE NAME: -------------------------------------------------------------- ADDRESS: ----------------------------------------------------------------------------------- ----------------------------------------------------------------------------------- ----------------------------------------------------------------------------------- ----------------------------------------------------------------------------------- ----------------------------------------------------------------------------------- ----------------------------------------------------------------------------------- TELEPHONE NO: ------------------------------------------------------------------------------ EMAIL ADDRESS*: -------------------------------------------------------------------------- (Please provide an email address as communication is carried out via email)

A BRIEF OVERVIEW OF YOUR ORGANISATION‟S WORK: ------------------------------------------------------------------------------------------------- ------------------------------------------------------------------------------------------------- ------------------------------------------------------------------------------------------------- ------------------------------------------------------------------------------------------------- ------------------------------------------------------------------------------------------------- ------------------------------------------------------------------------------------------------- MEMBERS OF THE HEART CARE PARTNERSHIP WILL RECEIVE INFORMATION ON MEETINGS, TRAINING COURSES AND EDUCATION AND INFORMATION SERVICES Please tick this box if you are happy for your information to be given to the British Cardiovascular Society for use when sending information on cardiac related issues

MEMBERSHIP OF THE HEART CARE PARTNERSHIP IS FREE TO USERS

Return to: HCP (UK), 9 Fitzroy Square, London, W1T 5HW Tel: 020 7383 3887 Fax: 020 7388 0903 Email: [email protected]

mailto:[email protected]

empowering cardiovascular groups to improve awareness ... · cardio & vascular coalition (cvc)...

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