SADS UK If you have any queries or information you would like to share contact: Anne Jolly, SADS UK, 22 Rowhedge, Brentwood, Essex, CM13 2TS Tel: 01277 230642 e-mail: info@sadsuk.org Web: www.sadsuk.org JANUARY 2006 SADS UK NEWSLETTER Sensitive Hearts Patient Support Seminar Manchester, April 29th Key Speaker Professor Clifford Garratt ***** Arrhythmia Awareness Week 12th – 19th September 2006 & UK Heart Rhythm Congress 2006, SADS UK National Conference 21st Sept. SADS UK are grateful for input to the Newsletter, please contact Anne Jolly, details given above. Any opinion or statement by the author of any article does not necessarily represent the opinion of SADS UK or its committee. Articles relating to health are for information only. SADS UK reserve the right to edit articles. The primary purpose of this publication is for general information and is not to be used as medical advice, diagnosis or treatment. Please tick and return, together with your address, if you no longer wish to receive the newsletter NSF CHAPTER 8, ARRHYTHMIAS & SUDDEN CARDIAC DEATH Arrhythmia Awareness Week 12th – 19th September 2006 Subsequent to the 1st Arrhythmia Awareness Week Campaign important National Service Framework guidelines were published to assist those with arrhythmias & safeguard those at risk from sudden cardiac death. Arrhythmia Awareness Week Partners, STARS, CMA and SADS UK are holding their THIRD Arrhythmia Awareness Week campaign which focuses on efficient healthcare delivery of the NSF guidelines and concludes with the UK Heart Rhythm Congress 2006, a three day conference for patients through to healthcare professionals; including discussion and updates on the new National Service Framework for Coronary Heart Disease, Chapter 8, Arrhythmias and Sudden Cardiac Death. We urge you to raise awareness during the Arrhythmia Awareness Week campaign, as we know that raising awareness can save lives. Just complete and send the enclosed Arrhythmia Awareness Postcard invite to receive further information about the many different ways in which you can take part. Patient Support Seminar, April 29th 2006 - Manchester SADS UK are holding the charity’s patient support meeting in Manchester this year and will gain further views regarding NSF Chapter 8. You are urged to book now to avoid disappointment. See PATIENT SUPPORT SECTION for further information. UK Heart Rhythm Congress 2006, 19th – 21st September 2006 SADS UK will be holding their National Annual Conference during the UK Heart Rhythm Congress being held in Birmingham. The conference held by SADS UK will take place on Thursday 21st September, which will include discussion about NSF Chapter 8. See CONFERENCES & MEETINGS section for further information. NSF Chapter 8 Arrhythmias and Sudden Cardiac Death Event North Trent Network of Cardiac Care – March 1st 2006 SADS UK will be attending this important event being held in Rotherham. The aim of this action planning conference/workshop is to provide support and facilitation to the six health communities within North Trent in addressing the three quality requirements and the 20 markers of good practice, as identified in the new NSF Chapter 8. Mike Yates, Department of Health Chapter 8 National Manager will address the meeting. Heart Improvement Programme Meeting, Cardiac Networks - Nov 2005 SADS UK attended the Heart Improvement Programme meeting, along with the Arrhythmia Alliance. Cardiac Network personnel tasked with implementing the NSF Chapter 8 attended this significant meeting. The Head of the Government’s Heart Team Mike Yates gave a key presentation, speaking about the challenges ahead. The day included presentations by Dr. Ed Blair our colleague from the Oxford Genetics Knowledge Park giving his perspective as a Geneticist. Cardiac network perspectives and pathologists and coroners views were also given. It was good to see such a diverse team come together to give their unique perspectives. Intense workshops ensued in the afternoon and on our table the question of commissioning was a very important one (how are funds organised to implement these changes). The ‘market place’ held in the afternoon gave the opportunity for members of the cardiac networks to speak to the charities. Information leaflets and care pathway posters disappeared rather rapidly! If you would like copies of the care pathways to pass to medical establishments please let us know and we will send you copies. DONATION OF HEART MONITORS Medical establishments helping SADS UK in their aims Beneficiaries of medical equipment agree to assist SADS UK in our aims to prevent premature loss of life. Feedback to SADS UK has shown that the heart monitors are easy to use and convenient. Patients with life-threatening rhythm abnormalities can be identified quickly and referred on for specialist checks. Patients with innocent conditions are quickly reassured. Testimonies from beneficiaries of heart monitoring equipment ‘Whilst I obviously cannot give details of individuals, the equipment has been absolutely crucial in diagnostic support of patients suspected of having arrhythmia. I am now able to offer a same day service for fitting of these monitors and so this has had a great impact upon the efficiency of the service, and more importantly, the timely diagnosis of the patients’ condition.’ ‘I am impressed by how quick and easy it is to attach and download and also by the quality of the reports. We currently have a long hospital waiting list for this procedure. Having the device has enabled us to do more rapid tests and produce instant reports. Furthermore we have been able to do tests on patients whom we would normally perhaps just have reassured after a clinical history. Only this week I picked up a young lady with what sounded to be sinus tachycardia but the 24 hour ECG showed a wide complex tachycardia.’ ‘Very useful item of equipment – may well have to have a second one at some point as occasionally there is a waiting list and thus difficult to prioritise.’ In Memory of Ben Hoare Geoff Hoare receives donation to the Ben Hoare memorial fund from Dr Nigel Ryan, Headmaster of Spalding Grammar School Johnson Hospital Geoff with Spalding Grammar School Boys, Nurse Jacqueline Roberts and Peter Wasley Students staff and governors from Spalding Grammar School took part in a Sponsored Walk in support of SADS UK to provide heart equipment to Johnson Hospital. Despite the wet weather they were pleased to undertake the 20 mile walk from Spalding to Crowland in memory of their former pupil Ben Hoare who died from SADS. Kirton Surgery Geoff and Noreen Hoare (right) are pleased to donate another heart monitor. Kirton Surgery are the beneficiaries of Geoff and Noreen’s TENTH heart monitor. Courtesy of the Lincolnshire Free Press and Spalding Guardian In Memory of Sarah Dudhill Conisbrough Medical Centre Dr Kackar, Dr Jackson, Dr Boon and Dr Farrar, beneficiaries of the third heart monitor donated by Lynn Dudhill in memory of her daughter Sarah. This is the third heart monitor donated by Lynn and she is already working towards providing further medical equipment this year. In Memory of Jamie Coffey Josephine Coffey has donated a heart monitor to their local doctors surgery in memory of her son Jamie Coffey. See RAISING AWARENESS AND FUNDS. NEWS SADS UK Patient Support Seminar April 29th – See PATIENT SUPPORT section Health MOT’s (The NHS life check) – Key part of Government’s Health White Paper The new Health MOT announced by Health Secretary Patricia Hewitt to be offered to all patients at five points in their lives to prevent serious illness is a good initiative but many feel it does not go far enough. The MOT proposes that various health checks are made at birth, eleven, eighteen, after childbirth and as people reach their 50’s. SADS UK wrote in 2004 to the Government’s Heart Team in response to the consultation to NSF Chapter 8 Arrhythmias and Sudden Cardiac Death. The response included:- As a minimum requirement a questionnaire should be completed at the ages of 11yrs and 15yrs (with parental assistance) to establish if the child experiences signs and symptoms consistent with a cardiac condition, a family member suffers with heart rhythm abnormalities, has been a victim of sudden death, or there has been an incidence of SIDS. The questionnaire responses help ascertain whether the child should be referred for further tests to be carried out. SADS UK proposes that a questionnaire to determine cardiac conditions is added to the NHS lifecheck Health MOT. If relevant questionnaire and tests were included in the Health MOT it could save many lives. The charity’s proposals have been put forward to the Health Secretary The Rt Hon. Patricia Hewitt. Arrhythmia Awareness Week 2006 – Join our Campaign Arrhythmia Awareness Week(www.aaaw.org.uk) is an annual health awareness campaign organised by the charities (STARS, CMA and SADS UK). This year it runs from 12 – 19th September 2006 and will launch the first UK Heart Rhythm Congress (www.ukheartrhythm.org.uk). The Campaign will raise the profile of arrhythmias (heart rhythm disorders) among the general public and in the media. Hundreds of individuals and groups across the UK will join forces to raise awareness of arrhythmias and sudden cardiac death. Vital funds will also be raised. 2006 marks the THIRD anniversary of the Arrhythmia Awareness Campaign and we encourage all of our supporters to join us and make this awareness week the biggest and most successful ever. Why Raise Awareness of Arrhythmias? Cardiac arrhythmia affects more than one million people in the United Kingdom and is consistently in the top ten reasons for hospital admission. Cardiac arrhythmia is the number 1 killer, more so than lung, breast cancer and AIDS combined. Up to one-third of patients diagnosed with epilepsy may be misdiagnosed and many of these may be suffering from cardiac arrhythmias. Finding out about arrhythmia early could improve a patient’s chance of finding a successful treatment and in some instances even save lives. Who Needs to Know about Arrhythmias It is important for all people to know about arrhythmias and we rely on supporters like you to assist. One of the best and most effective ways to raise awareness of heart rhythm disorders is to start in your local community and workplace. Think about places where people congregate and invite your friends and colleagues to help distribute information and/or hold an event. Special posters and publicity merchandise to help support your activities are available. You will find the Arrhythmia Awareness Week Postcard invite enclosed. Just complete and send for information on how you can help. SADS UK will help you in whatever way they can. Its simple – do as little or as much as you feel able - Your help is vital. Don’t hesitate to contact the charity for further Arrhythmia Awareness Week campaign invites to send to others, just let us know how many you’d like. Why is the SADS UK Newsletter now entitled Sensitive Hearts? The name Sensitive Hearts comes from our Australian comrade, Julie Foley, Founder of the Australian SADS Foundation, which forms part of the worldwide network of SADS organisations that SADS UK works with. Julie sent us QT Koala, their furry ambassador, as a gesture of friendship and message of encouragement and support for the charity SADS UK and our families. We believe the charity SADS UK has a sensitive heart and agree with Julie that Sensitive Hearts is a good title for the newsletter, so we too would like to adopt this title. We’d be pleased to hear your thoughts. National Institute for Health and Clinical Excellence (NICE) are set to increase the number of patients receiving life-saving implantable cardioverter defibrillators (ICD’s). The health technology appraisal regarding the ICD commenced in 2003 and SADS UK and their patient expert were invited to provide evidence to the NICE ICD appraisal committee regarding the patient perspective and quality of life of people living with ICD’s. Louise was able to give an excellent personal account of living with an ICD since 1988 and Anne was able to speak from knowledge gained from speaking with members living with ICD’s and questionnaires provided by members which gave relevant information. Presenting their first evidence to the appraisal committee in 2003 and attending meetings up until last year, Anne Jolly and Louise Power are pleased to see such a positive outcome. The new guidance which updates NICE’s original guidance published in 2000 is set to increase the number of people who might benefit from an ICD. The NICE guidance recommends which categories of patients should be considered for an ICD which includes patients with specific cardiac abnormalities known to carry a high risk of sudden cardiac death. This includes people with familial conditions such as long QT syndrome and hypertrophic cardiomyopathy, as well as certain types of congenital heart disease. SADS UK North-West Co-ordinator, Angela Morris Last year was a busy one for Angela, and it doesn’t look like slowing down at all this year either. Between her important role of supporting the bereaved in her area, she has been attending important meetings covering aspects of genetics and sudden cardiac death. This year her diary is filling rapidly. Angela says her work helps get her through living without her son Colin Hankin and the work she carries out is in Colin’s memory. Dr Andrew Grace MB BS PhD FRCP FACC - Papworth Hospital I have been Medical Advisor to SADS UK for approximately 3 years. I am a Cardiologist with a large clinical practice also running a research group in Cambridge University investigating the underlying mechanisms of Sudden Cardiac Death. I therefore advise the organization on their activities in genetics, arrhythmias in general, prevention, patient care and education. I also advise on the best management of these conditions and some individuals I will see in Cambridge to advise on further management. Sudden Cardiac Death (SCD) is a major community health issue and the clinical manifestation of the arrhythmia, ventricular fibrillation, it is responsible for an estimated 70,000 deaths annually in the U.K. – in many of these the death is totally unanticipated, coming out of the blue leaving bleak devastation and profound grief. The service provided by SADS UK is to be there for the community with help and support should these events strike. Provision of accurate, up-to-date, clearly expressed information has provided knowledge leading to a cascade of support for affected families. In addition effective lobbying has helped lead to changes in national policy and strategy. The community is abruptly affected by sudden death – SADS UK realised early the need for immediate support – accordingly it raised its profile targeting individuals likely to confront the problem; especially health care professionals. This has been achieved directly through hard copy leaflets, posters, booklets and well-publicised information. These direct approaches have been assisted by newspaper, television, radio and web-based media reports. Their efficacy is clear to me as a specialist – the families I see from a broad referral base will almost invariably know of SADS UK and most likely have been assisted by them. The range of organisations with which they have established contact nationally and internationally is impressive. Sudden cardiac death (SCD) impacts on everyone – the activities of SADS UK have comprehensively addressed SCD issues broadly but also with deep and effective focus. At policy level, they have lobbied hard to get SCD on control government’s agenda, they have forced the funding agencies to provide research infrastructure and have encouraged the media to cover difficult underlying issues accurately and informatively. In the community, they have provided information via leaflets, websites, conferences and local meetings for all those needing to know more – they have also provided means for detecting those at risk. For individual, deeply-traumatised families they provide counselling and much-needed support, points of contact and mechanisms for expedited referral. Their impact has been enormous. SADS UK have clear objectives, have efficiently raised and deployed resources and effectively involved all those needed for the successful achievement of their goals. ................................................................................................................... Dr Andrew Grace is speaking at the UK Heart Rhythm Congress 2006. At the SADS UK Conference to be held on Thursday 21st September he will be speaking about indicators that would suggest a condition that can cause a sudden cardiac death and familial causes of these types of conditions and their diagnosis. ……………………………………………………………………………………………………………………………………. Sister Sarah Collitt In August 2005, Sarah an experienced cardiology nurse, began working on a Service Development Project run by the Regional Genetics Service, Manchester in the North West Genetics Knowledge Park (Nowgen). The project is funded by the Department of Health following an invitation to bid in 2003 based on the Genetics White Paper Our Inheritance, Our Future. A letter of support from Anne Jolly was included in the bid which helped to secure funding for this project. It is a two year project that will integrate research into clinical practice providing a service to people at risk of SAD. One of the aims of the project is to increase the uptake of genetics services by this group. The service is available to a variety of people with cardiac conditions including those with Long QT, Brugada, Cardiomyopathy, ARVC and Marfans. The service is also available to those who have lost a relative to SAD. The service will involve taking a detailed family history and use this to assess the risk to other family members, offering genetic testing, where appropriate, to affected patients and their families. Referring on to our medical and nursing colleagues, in cardiac services where it is appropriate, for further evaluation of their care. Genetic departments are different from many other hospital departments in that they offer a service to whole families, not just individuals. They are able to discus how a genetic risk may affect the whole family, and are aware that individuals within the family group may react differently to this news. This is especially important when the family have been bereaved, as people all react differently in this situation, and have individual ways of coping. By increasing the uptake of genetic services in the North-West Region it is hoped that further bereavements within these families will be prevented. Working closely with cardiac services, the project aims to improve care to these families, promoting their health and reducing the risks of further complications to these groups. ……………………………………………………………………………………………………………………………………… Sister Sarah Collitt will be speaking at SADS UK’s Patient Support Seminar in Manchester on Saturday April 29th about the work she is doing with families. Support Seminar registration details are enclosed. ……………………………………………………………………………………………………………………………………… Bliss Magazine – January 2006 Colette Agnew speaks about the heartbreak of losing her sister Ciara at such a young age and the anguish of the family when the tragedy struck. Colette has worked hard in Belfast where she organized a sponsored walk in memory of Ciara and raised funds which resulted in her donating a heart monitor to the community. Membership to SADS UK As you know SADS UK have channeled much of their efforts into education and support, providing forums for both families and healthcare professionals to achieve this. This year is no exception as the charity holds their Patient Support Seminar in Manchester and National Annual Conference in Birmingham. The charity extends grateful thanks to all their supporters, whose assistance and continued support over the years enables the charity to continue with their aims and objectives of preventing sudden cardiac death; supporting families living with cardiac conditions and those who have been bereaved. SADS UK membership form is enclosed (£12 per annum) for supporters who wish to commit to the charity. For those who would like to donate to the charity there is a section on the form for this also. Ablation Procedures Concern SADS UK members are being urged to write to the Prime Minister and Health Secretary regarding cancellation of some ablation operations. Oxfordshire, Buckinghamshire and Berkshire have put a stop to catheter ablations on the NHS except in high risk cases. Tony Blair had this ablation procedure in 2004 to correct the abnormality of his heartbeat and was back at the work the following day. Anne Jolly, Chair of SADS UK said ‘I have written to Tony Blair to express our concern. This seems unbelievable, especially after the new Government NSF guidelines being put in place to help people with arrhythmia. We are a member of the Arrhythmia Alliance and they have brought attention to this concern through television and newspaper media.’ SADS UK Member Geoff Hoare–Volunteer of the Year Award SADS UK member Geoff Hoare from Spalding, Lincs made it through to the London finals of Volunteer of the Year, prestigious award supported by the Home Office. The celebrations will be compared by Jon Snow; with Dame Kelly Holmes and Peter Waterman being just a couple of the celebrities and VIP’s attending the event at the Theatre Royal, Drury Lane on January 22nd 2006. Geoff and his guests will be treated to an afternoon of West end acts which will accompany the presentations of the Nationwide England Category Champions. Geoff has raised funds of over £20,000 since the death of his beloved 21 year old son Ben in 2002, who died from an undetected heart condition. The tragic death of his son compelled Geoff to work selflessly to the good of the community in Lincolnshire, to assist those who may also be at risk of sudden cardiac death. He has provided 10 heart monitors in the community. Yorkshire Television interview with Geoff Hoare Geoff was featured on Yorkshire TV when they interviewed Geoff about his fantastic achievement. Geoff spoke of his determination to prevent these tragedies and his support of SADS UK. The Medical Technology Group (MTG) The Medical Technology Group has established itself as a strong campaigning force for patients. Through its activities in Parliament, Whitehall and the devolved administrations, it is seeking to present a picture of a modern, effective NHS which responds to the needs of the patients. http://www.mtg.org.uk/PolicyAgenda.asp CONFERENCES & MEETINGS Promoting better understanding, diagnosis, treatment and Quality of life for individuals with cardiac arrhythmia Over the three days the Congress runs a wide range of presentations and activities including scientific sessions, live cases, discussion and updates on the new National Service Framework for Coronary Heart Disease, chapter 8, Arrhythmias and Sudden Cardiac Death will take place. The congress will also host the HRUK/BPEG "Cambridge Course", the "Bard Masterclass" an electrophysiology course for physiologists and other allied professionals and the HRUK Nurses course. There will be a series of presentations and lectures designed for doctors, physiologists, nurses and patient groups as well as a 3 day trade exhibition bringing together a wide range of commercial companies, charities and other groups. Presentations and lectures will focus on areas including Syncope, Atrial Fibrillation, Sudden Cardiac Death, Cardiomyopathy, Paediatric arrhythmias, ICDs, pacemakers, resuscitation and much more. SADS UK will be holding their conference on the last day of the UK HEART RHYTHM CONGRESS 2006 SADS UK Annual Conference, Birmingham – (Held last day of the UK Heart Rhythm Congress) SADS UK’s National Annual Conference will be held on the last day of the UK Heart Rhythm Congress, on Thursday 21st September 2006 at the National Motorcycle Museum, Solihull, West Midlands. The SADS UK National Conference will disseminate information about the new NSF Chapter 8 guidelines and potentially lifesaving knowledge. The objective is to provide GP’s and Primary Care Teams with information to assist in the prevention of sudden cardiac death. Families will also find the conference of great interest as they learn more about these conditions and support available. Invites will be sent directly to healthcare providers and you may also wish to speak with your healthcare provider to urge them to attend this important day. Key speaker Professor John Camm from St Georges Hospital London will provide information about medications and therapy for cardiac arrhythmia. Other eminent cardiologist, pathologist and geneticist will be presenting important information. The agenda includes Dr Andrew Grace, cardiologist, who will provide indicators to be aware of, that would suggest a person is at risk of sudden cardiac death; their diagnosis and treatment. Dr Ed Blair, geneticist will speak about the development of routine clinical testing for inherited cardiomyopathies and the Long QT Syndrome. Dr Margaret Burke, cardiac pathologist, will speak about the importance of accurate cardiac pathology. Meeting the support needs of relatives impacted by cardiac arrhythmia and sudden cardiac death will also be discussed. Registration to the SADS UK conference is £30 inclusive of refreshments and lunch. Contact SADS UK on 01277 230642. You may register online for the SADS UK Conference at www.ukheartrhythm.org.uk/html/registration.html PATIENT SUPPORT Patient Support Seminar, Nowgen Centre Manchester, April 29th 2006 Supporting those affected by Cardiac Arrhythmia and Sudden Cardiac Death The Support Meeting provides the opportunity for people living with cardiac conditions and those who have been bereaved through sudden cardiac death to gain and share information. The seminar will be held at the Nowgen (North West Genetics) Centre, Manchester on Saturday April 29th. Register now by ‘phoning SADS UK on 01277 230642. Professor Clifford Garratt MBBS MA DM FRCP SADS UK are delighted that Key Speaker Professor Clifford Garratt who initiated an important programme of clinical and laboratory based research into cardiac arrhythmias at the Manchester Heart Centre will be speaking at the seminar about assessment of risk in relatives of victims of sudden cardiac death. Sister Sarah Collitt from the Nowgen Centre and Specialist Nurse Jeanette Hornsey from Wythenshawe Hospital will speak about their work with families who have been affected by cardiac arrhythmia and sudden cardiac death. Anne & John Jolly will give information about the new NSF Chapter 8 and there will be a choice of two workshops:- 1) Support needs of those impacted by sudden cardiac death 2) Support needs of people living with cardiac conditions and devices. SADS UK North West Co-ordinator Angela Morris and Trustees Brenda and Barrie Irons look forward to meeting with you. Similar to the last patient support seminar held there will be the opportunity to meet for dinner in the evening and for coffee the following morning for those who would like to get together. The cost of the patient support seminar is £15 to cover lunch and refreshments. Registration details are enclosed with the newsletter. Anna Lane, Development Officer, Patient and Public Involvement What would you like your health care professionals to know about genetics? This was the question I posed at my presentation to the SADS UK Patient Support Seminar on Saturday 8th October 2005. I had travelled to Watford on a bright and sunny day for what promised to be an interesting and very worthwhile discussion with members of the charity, and I was richly rewarded with a warm welcome & enthusiasm. Professor Richard Sutton gave the first presentation, which included an overview of his work as an NHS Consultant Cardiologist and his involvement with the development of Pacemakers. He continues to research in the field of vasovagal syncope and now his interest has spread to cardiac resynchronization. Needless to say I felt his was a hard act to follow so I took the opportunity to ask everyone to stand up and have a stretch, smile at the person next to them and hopefully forget what a fantastic Speaker they had just had! Laughing and relaxed the audience took their seats again and I introduced myself and my role as Development Officer for Patient and Public Involvement on behalf of the NHS National Genetics Education and Development Centre, and the West Midlands Regional Clinical Genetics Unit. I outlined the work of the new Centre and described how we want the involvement of patients to inform the development of education and training in genetics for NHS staff. In developing our learning support materials we aim to use first hand accounts of patients to demonstrate the clinical utility of genetics and to tailor them to the needs of the different health care groups. The current experience of patients, and their views on the knowledge, skills and attitudes that health care professionals need for a positive patient experience will help focus genetics education appropriately. Therefore we need to gain an understanding of what patients want their health professionals to know about genetics. Activities where patients with genetic disorders, their families and carers, may wish to help include; • Advising on what you expect health professionals to know about genetics, • Recounting the usefulness (or otherwise!) of genetic information, • Sharing experiences, • Reviewing learning resources, • Reviewing our website. The SADS UK Patient Support Seminar also included discussions on aspects of Insurance and the new National Service Framework Chapter 8 Arrhythmia and Sudden Cardiac Death. It was clearly a very successful and enjoyable day, and I would like to thank Anne Jolly and SADS UK for inviting me. If you would like further information on how your views, opinions and experiences will help the Centre to develop genetics education in the NHS please contact me, Anna Lane, on 0121 623 6905 or email anna.lane@bwhct.nhs.uk Billericay, Brentwood and Wickford Patient and Public Involvement (PPI) in Health invite SADS UK to speak at public meeting Anne Jolly of SADS UK was invited by the Billericay, Brentwood and Wickford Patient and Public Involvement (PPI) in Health Forum to speak at the Old House. The PPI’s meeting is held quarterly and members of the public are invited to attend and learn more about specialist health subjects. Anne gave information regarding signs and symptoms of life-threatening cardiac conditions and the importance of detection and treatment of these conditions. She said ‘I am delighted to have been chosen as guest speaker for the public meeting held by the PPI, to speak about cardiac conditions and SADS. We recognise that disseminating information and raising awareness is crucial in preventing sudden cardiac death and know of several people who further to presenting SADS UK information leaflets to their health professional have subsequently received the correct treatment for their condition ’. Anne Jolly Anne spoke about the new National Service Framework Chapter 8, Arrhythmias and Sudden Cardiac Death and the guidelines for health professionals which were issued subsequent to campaigning by SADS UK and other charities and how SADS UK believe these guidelines will save many lives and improve the lives of those living with arrhythmia. The PPI in Health are groups of volunteers who visit NHS hospitals, doctors surgeries, pharmacies, etc., to obtain views and comments of patients and the public to present to the local NHS Trusts. Their constructive views and recommendations have led to several improvements in health services. Patient and Public Involvement (PPI) There is a Patient and Public Involvement Forum for every NHS Trust and Primary Care Trust (PCT) in England. They are made up of local people and have powers. The Forums play an active role in health related decision making within their communities. Members of PPI Forums, are provided with training and development opportunities to enable them to participate effectively. Each Forum is supported by a Forum Support Organisation and the Commission regional centre. PPI Forums are a key vehicle for raising awareness of the needs and views of patients and the public, and placing them at the centre of health services. They have a number of primary roles, which include: Obtaining views from local communities about health services and make recommendations and reports Making reports and recommendations on the range and day to day delivery of health services Influence the design of and access to NHS services Providing advice and information to patients and their carers about services PPI Forums work together to share experiences and to address common issues. ‘Life is not measured by the years you lived; but by the love you gave and the things you did.’ As many of the stories in this magazine often show our lives have an impact upon other people. The tragic loss of life, often at a young age, through conditions such as SAD disorders is horrific and terrible. Their loved ones remaining are left not only with fond memories of their life, but also an indescribable grief. Sadly it is often only when someone dies that we recognise the impact that their life, and personality, had on other people. Whilst I completely recognise the need to remember those who have lost their lives, and support their family and friends, I also feel it is necessary to remember that people are living with Long Q T Syndrome and other similar conditions. People who have Long Q T Syndrome have a story – a story of a life lived! If someone has a SAD condition they need not only have an impact through their death, but also through the life that they live. Those of us who have Long Q T Syndrome, or know someone who has a SAD condition have a story, and we have a role to play in that story. As the quote above states, we have ‘love to give’, and also a life to live! Part of that role is also in informing other people about SAD conditions, and letting medical professionals know about the positive and negative aspects of our treatment. My story begins when I was 18 years old and I was diagnosed with Long Q T Syndrome, just before leaving for university. Following further blackouts at 21 years old I was fitted with an ICD, thankfully since this has been implanted over the past 2 years my condition has been much more stable. Both of these incidents were life changing for me and admittedly I have experienced difficult times in processing and dealing with this diagnosis. Some seasons in life are tough… However, against these difficult times I am also so thankful! I am thankful for the life that I have, for the skill of Doctors and Nurses that have cared for me, for the medical technology that keeps me alive each day and for the support of my family and friends. In the summer of 2002 I had the privilege of sailing aboard a tall ship, ‘The Lord Nelson’ through the Mediterranean. Everyone was involved in both sailing, and the day-to-day running of the ship. This was particularly significant to me as the crew members were both able-bodied and disabled – people in wheelchairs were even hoisted to the top of the mast! I mention this because the motto of the ship is ‘ability not disability’, something that I am regularly reminded of. There was a real team spirit on this trip beyond anything else I have ever experienced before. It was amazing to have the opportunity to sail through the storms that we faced together, all playing our part, and all supporting each other, whatever our ability. After attending the recent SADS UK conference in Watford it seems that we are in a similar situation. There was a real sense of a team spirit and a mutual understanding during that day, but a lot of us have faced many storms in life. However, I found it an amazing opportunity to share my story with other people who understood, but it was also an opportunity to look at all of those experiences as a whole. The impact of all our stories is huge! I am encouraged that the organisation SADS UK not only provides us with the opportunity tell our account, but also to work together as a team, like my experience on board the Lord Nelson. After the conference I felt inspired to tell my story, but I would also like to encourage you to tell your story, remembering that ‘life is not measured by the years you lived; but by the love you gave and the things you did.’ Naomi Billingham The Heart Care Partnership (HCP) UK Training Resource The Heart Care Partnership UK are developing their British Cardiac Society affiliated group website to explore education and information in the empowerment of cardiac patients and their carers in an understandable format, including explanation of acronyms and jargon. Participation in a multidisciplinary team at continuing educational events and service development meetings is the best way forward for keen patient/carer representatives, their input is extremely valuable. These findings will help inform the evolution of the Heart Care Partnership UK Educational Resource. If you are interested in taking part in these types of forums please contact Anne Jolly. Further information about the Heart Care Partnership UK can be found on www.bcs.com Cutie (QT) the Support Koala Bear enjoys a day flying with Debbie Hughes I lost my husband Tony Hughes on the 21st March 2002 to SADS; he was just 35 years old. I work for British Airways as Cabin Crew so thought QT Koala would enjoy coming to work with me for a day. We started the day by flying from Gatwick to Luxemburg and back, and then out to Pisa in Italy and back Before our journey QT Koala visited the flight deck and met the Captain Peter Brice, and First Officer Jonathan Cottrell, then it was time to fasten our seat belts for take off During the flight QT was well looked after by all the Cabin Drew, Mary, Linda, Lucy and myself Debbie. QT Koala enjoyed looking in the luggage hold but was a little frightened because it was a bit dark. Next I found her sitting on the engine and she asked me if she could try wing walking next!! Maybe you’d like QT Koala to stay a day or two with you? SADS UK Penpals If you would like to write to others please send your contact details, age and interests to SADS UK and we will put people in contact with each other by mutual agreement. We have a database of young people waiting to hear from you. For Cardiac Support Joanne Kiddell, Norfolk Susan Murray, Cornwall suzynador@aol.com Brenda Irons, Herts BarrieIrons@aol.com Other Useful Resources Arrhythmia Alliance www.arrhythmiaalliance.org.uk The Cardiomyopathy Association www.cardiomyopathy.org BEREAVEMENT SUPPORT Northern General Hospital, Sheffield – November 2005 Genetic Heart Disease Study Day Professor Nigel Wheeldon gave the background to genetic heart diseases such as the Long QT Syndrome. Clinical genetics and DNA mutation analysis, together with the pathological aspects of genetic heart disease were also discussed. The genetics of cardiomyopathies was covered by Professor Bill McKenna and the Marfan Syndrome by Anne Child. Sheffield Teaching Hospitals has set up A new service to help patients and families at risk from inherited cardiovascular disease. Genetic Heart Disease Nurse Aliceson Minto spoke of her new role in the service and the importance of speaking with families affected. She invited Anne Jolly who spoke about the work of the charity SADS UK and the support needs of the bereaved and those living with hereditary cardiac conditions. Bereavement Support Availability It seems that death is a taboo subject in our society, especially that of a child or young person. It is of particular concern to the charity SADS UK that the bereaved receive the support they may need. We would like to hear from members about their experiences regarding bereavement support, together with accessing further cardiac tests and genetic counseling. If you would prefer to complete a questionnaire on any of these aspects, please contact Anne Jolly, 01277 230642 Lin Baldwin’s findings regarding bereaved parents spiritual experiences Dear Friends, I am writing to thank you for sharing your grief experiences with me, so many touching and poignant stories about your link with your children and proof to me that the bond continues after their death. I had always thought this to be the case, as sharing my thoughts with other bereaved parents, showed that there was ‘something else going on’ that, although not tangible, was definitely there. From the vast amounts of data that I have collected there are strong themes emerging and I hope to assimilate this information to put into a form that will validate this fact. Many counsellors use 'models' of grief which are linear and sequential ( very neat suggesting a beginning, middle and end to the process!) and based on psychoanalysis developed by Freud who stated that ‘mourning has a quite precise psychical task to perform; its function is to detach the survivor’s memories and hopes from the dead’. I have always thought that this is a load of rubbish and set out to argue against it. Newer thinking on parental grief - in its infancy and which does not seem to have 'filtered through' yet - is based on what bereaved parents actually experience. It strongly suggests that parents will 'continue bonds' with their children in a number of ways. Here are some of my thoughts:- ¨ The loss of a child has huge, far reaching and long term effects upon the bereaved parent in all aspects of their life. • Traditional models of grief which have been developed over the past 100 years and with a psychoanalytical or medical bias are inadequate to describe the complex, multidimensional nature of grief. • These models may be unduly influenced by culture and rooted in positivist philosophical assumptions but nevertheless remain prevalent within Western society. • The concept of ‘pathological’ grief which does not follow a prescribed staged and linear model pattern may be more damaging than helpful to grievers suggesting as it does an unhealthy attachment to the deceased. • The concepts of ‘letting go’, ‘moving on’ and ‘closure’ suggest an ending to grief and a resolution of it. This is often an unrealistic and unmanageable task for the bereaved and in particular for the bereaved parent. Empirical studies show that this does not actually happen. • The model which includes ‘continued bonds’ with the deceased child may be a more realistic representation of what actually happens as evidenced by many studies of the bereaved from an empirical, sociological and ethnographical standpoint and in common with the ‘zeitgeist of the time.’ • Parental grief because of the intensely physical, emotional and spiritual nature of the parent/child bond is qualitatively different and lasts much longer than any other grief –often for the lifetime of the bereaved parent - although it may change in form, at least outwardly, over time • The concept of continuing bonds with the deceased, addressed by new and evolving models of grief, suggest that these are healthy and normal. Reference to other times and cultures highlight this and show that continued bonds have and continue to be part of the human response to bereavement. • Continued bonds represented by memorialising, celebrating, ritual- sharing and other practices naturally happen within supportive groups of people and within many cultures. It is only predominately in the Western world and within the past hundred or so years that this aspect of grief has not been given credence or sanction within society. • Parents build ‘durable biographies’ of their deceased child as a way of continuing bonds and this is often achieved within a community of other bereaved parents. • Continuing bonds with the deceased child is an essential part of finding meaning for a bereaved parent. They may encompass experiences of an unusual psychic and spiritual nature which are not generally expressed for fear of ridicule but which are nevertheless described with great conviction. These types of psychospiritual experiences often remain private and are not generally given credence in our society. • That the child may become ‘ saint or bodhisattva’ or gateway to the transcendent for the parent is a way of maintaining continued bonds and may be seen as aiding the development of 'coping strategies following the 'ultimate loss' and leading to a widening perspective and spiritual development in many instances. Thank you again for your input and I look forward to speaking with you further. Lin Baldwin Bereavement Resources available through SADS UK The following books have been published and CD’s compiled to offer understanding and support to members who have lost a family member to SADS:- Life Without Colin by his mum, Angela Morris Calling Owls by Tom’s mum, Lin Baldwin ‘Re-unite’ cd in memory of Robert Manning, written by his friend Brian Walpole Sing Christmas Songs, in memory of Fiona Skinner SADS UK Tribute Book Please keep sending your tributes in. These may be to a loved one who has sadly died or about someone who is living with a cardiac condition; they must be original and written by the person submitting them. The Compassionate Friends TCF charity (support group for bereaved parents and siblings) are offering black silicone wristbands £1.50 ‘Loved today, yesterday and forever more’ www.tcf.org A Walk on the Wildside Retreat Due to popular demand we will be holding another Retreat in the future. Please contact Anne Jolly to register your interest. 01277 230642 For Bereavement Support:- Anne Jolly (Support and Counselling) CONTACT ANNE JOLLY FOR FURTHER DETAILS OF THE SUPPORT CONTACTS LISTED BELOW info@sadsuk.org Tel: 01277 230642 Susan Murray, Cornwall suzynador@aol.com Wendy Allum, Buckinghamshire Wendy.Allum@amersham.com Angela Morris, Woolston, Cheshire angela@morris114.freeserve.co.uk Susan Parker, Winford, Cheshire Beryl Peill, Staffordshire jeffrey.peill@ntlworld.com Nikki Kew, Heckfield, Hants Niki Hellyer, Southampton, Hants Joy Mason, Middlesex jmason@brooklands.ac.uk June Nicholls, Sutton Coldfield The Compassionate Friends helpline For the support of bereaved parents Office Tel No. 0845 1 23 23 04 (charged @local rate to callers) 0845 120 3785 Child Death Helpline Freephone: 0800 282986 Cruse Bereavement Care Helpline 0870 167 1677 National Bereavement Partnership 0845 226 7227 The WAY Foundation (for men and women widowed up to the age of 50) info@wayfoundation.org.uk 0870 011 3450 Bereavement Support for children:- Winston’s Wish General Enquiries Helpline 01242 515157 0845 20 30 40 5 Child Bereavement Trust Support and Information Line Also assists adults 01494 446648 RD4UWebsite designed for young people by young people. Part of Cruse Bereavement Care www.rd4u.org.uk RAISING AWARENESS AND FUNDS Justgiving.com SADS UK have subscribed to this easy way of giving. Members have set up webpages and found this an effective way to raise funds. Serco Solutions Coffee Morning Berni Brosnan raffled a Christmas Hamper and teddy bear which was kindly donated by her friends Val and George Ling. Berni and her colleagues raised a fantastic £166 in support of the charity. MOTHER TRIES TO SAVE LIVES BY KIND PERMISSION GLOUCESTER ECHO Josephine Coffey has donated a heart monitor to her local doctor's surgery in memory of her son. Seventeen-year-old football fanatic Jamie died having a kickabout with his mates in July, 2004. It was later discovered he had an undetected heart defect. Josephine set up a memorial fund to raise money to provide a heart monitor for Stoke Road Surgery in Bishop's Cleeve. A plaque will be placed in the surgery in Jamie's memory. The equipment cost £1,500 and means patients will not necessarily have to see a specialist at Cheltenham General Hospital. Josephine said: "I made a promise to Jamie when he died that we'd raise the money for a heart monitor and I'm over the moon that it's now in the surgery. "We'd love to prevent anything tragic happening like this again Jamie was playing in a Bishop's Cleeve park last July when he collapsed. Paramedics tried to revive him but he was pronounced dead at Cheltenham General Hospital. He died of a condition known as ischaemic heart disease which involves a lack of oxygenated blood. A football tournament, which raised more than £1,000 for the heart monitor, was held in June. It was organised by pupils at St Benedict's, where Jamie had been a pupil. Josephine has campaigned to make people aware of sudden adult death syndrome which affects adults who appear to be fit and healthy. The heart monitor is strapped to the patient for 24 hours and records their heartbeat. A computer program then identifies any irregularities. Dr Jim Moore said: "We're extremely grateful and delighted to have this equipment. "It will be able to give reassurance to both old and young patients and detect irregularities without people having to go to Cheltenham General." By kind permission Gloucestershire Echo Fund Raising Tip A popular way of raising funds has proved to be raffling Hampers. Make up a hamper from food items and wine donated by friends and family or even shops and supermarkets. Raffling a hamper is especially popular at Christmas and Easter, where the hamper is made up appropriately for that special time of year. Alternatively you could always collate a “healthy food /low calorie food hamper” – could go down well at your health and fitness club. Raffle the hampers at work or within a club where you are a member. Remember to ask permission to hold the raffle from the organisation where you intend to hold the raffle before you start to put a hamper together. Put a teddy in the hamper and name the teddy in the process. It’s an easy, fun way of raising funds. For further fundraising tips contact SADS UK – Tel: 01277 230642 or e-mail: info@sadsuk.org Christmas Cards 2005 An enormous thanks to everyone who bought SADS UK Christmas Cards. The funds raised from these are building year on year and assist the charity with much needed funds. We expect to have an exciting new range of cards this year. Brenda and I enjoyed meeting you at the Patient Support Seminar and speaking with you before Christmas. We look forward to meeting with you again at the Patient Support Seminar in Manchester and SADS Conference in Birmingham. We look forward to speaking later this year. In Memory of Jonathan Hooper Jonathan's family and friends took part in a sponsored walk on November 5th 2005, the first anniversary of his sudden death. The walk retraced the route of a charity "barrel push" undertaken by Jonathan previously. Over £500 was raised for SADS UK, a similar amount was donated to the BBC Children in Need Appeal, an event supported annually by Jonathan himself. As a family, we hope to continue to raise awareness and help prevent other families suffering such a tragic and devastating loss. In Memory of Ria Hickerton – BBC News Online Ria’s mother Andrea spoke to James Elliott BBC News health reporter about her struggle to find cause of death and the need for more research into Sudden Arrhythmic Death. SADS UK’s medical advisor Dr Andrew Grace said, ‘The problem is that we do not know all the genes that may be implicated at the moment and therefore once cannot screen for anything but a proportion of the relevant causes. What is more commonly done is to look at the ECG’s of siblings and possibly also take blood samples from them for later DNA analysis. Dr Grace said a national screening programme would not be a good way for doctors to find the small number of cases involved. Instead, a better way of finding out who was at risk was to look out for warning signs – such as faints or unexpected falls. Then the person should be referred to a specialist for investigation.’ In Memory of Daniel Young By kind permission of Leigh Journal In Memory of Chris Peill By Kind permission of Stafford Express & Star By kind permission of Stafford Newsletter In Memory of Kimberly Robinson My Auntie Hilary, Kimberly’s mum will be doing a sponsored slim and would be grateful if you would sponsor her. Auntie Hilary is raising funds on behalf of and in memory of her daughter Kimberly Robinson (Kim). Kim was a normal healthy girl who passed away from Sudden Adult Death (SAD) in February 2001 aged only 18 years old (quite similar to Sudden Infant Death Syndrome- a sudden unexplained death in an infant). It was of course very distressing and very shocking due to the suddenness of it all and a great loss for all family members, friends and especially my Auntie Hilary. Since Kim’s sudden untimely death Auntie Hilary has tirelessly been raising funds and raising awareness of SADS with the charity SADS UK. Over the past four years she has participated in 4-Flora Light Runs, 2-Nike Runs and 1-Bupa run, as well as collecting used stamps for the charity SADS UK, and in March 2004 successfully achieved the necessary funds of approx £4,000 + to purchase heart monitoring equipment which she donated to her own GP surgery in memory of Kim, which was reported in the local press. It is possible that Kim could have had a rare heart condition, and if detected earlier using equipment of this kind may have saved her life. Such efforts that Auntie Hilary has made will hopefully save the lives of others, and will be a testament to the memory of her daughter Kimberly. Thank you for sponsoring my Auntie, Tamarah BUPA 10k Run and Hydro Active Womens Challenge Hilary Robinson and Karen Doyle took part in their regular sponsored runs to raise funds in memory of Hilary’s daughter Kimberly. In Memory of Ashley Jolly BT local business support SADS UK with £7,500! Quiz Night The November Quiz Night raised an amazing £860. Enormous thanks go to Barrie and Brenda Irons for donating an exercise bike for the auction on the night and to his daughter Jayne for donating a dishwasher. Date for your diary:- Quiz Night on March 18th at Keys Hall, Brentwood, Essex. Marathon Sponsored Walk Greg Gower is planning a Marathon Sponsored Walk across the Downs in support of SADS UK. If you are interested please give SADS UK a call. In Memory of Ryan Bothamley Golf Day Graham Gosling raised from a Golf Day table draw and the auction of a signed rugby ball in memory of Ryan. By kind permission of the Sheffield Star Ryan Bothamley, Memorial Football Match – December 27th 2005 Enormous thanks go to Julie and Paul Carder, the players and all those involved with the day. A fantastic £300 was donated to SADS UK In Memory of Tony Hughes The Beached Boys - Sunday March 12th 2006 Devonshire Park Hotel, Eastbourne Angela Hughes, is hosting another evening in memory of her son Tony. The Beached Boys tribute band are set to have the house rocking with the Beach Boys greatest hits at the Devonshire Park Hotel, Eastbourne. The evening is sure to be packed to the gunnels, as the ‘Beached Boys’, the Beach Boys tribute band are set to join Angela on Sunday March 12th for an evening of great Beach Boys music. The Beached Boys magically capture the original sixties surfing sound of the Beach Boys the sounds of Brian, Mike, Carl, Al and Dennis who made up the inspirational and very different California group The Beach Boys. Contact SADS UK for further details and tickets for the evening. In Memory of Paul Curry Elisa Curry held a very successful walk as a tribute to her husband Paul, who died without warning at the age of 27yrs. We are grateful to those taking part and making it such a successful day. In Memory of Louis Carter We have set up a website set up to help raise money for S.A.D.S. in memory of Louis Carter a very close cousin and boyfriend. He was sadly taken from us last year Sept 24th aged 18 http://www.justgiving.com/louis_carter_sads Lisa Ellis and Lisa Waldren In Memory of Rebecca Holt Guide leader, Unit helper and Girlguides from St Mary’s Guides Langho raised funds from a Volunteer fair and a few weeks later from a raffle at their coffee evening in support of SADS UK. Raising £82.95 in memory of Rebecca Holt. ‘Rebecca was an enthusiastic Guide in our unit and is fondly remembered’ Denise In Memory of Andrew Mitchell Lisa and Andrew at Andrew’s 21st Birthday celebration. Lisa Bonnor has been supporting SADS UK in memory of her boyfriend Andrew Mitchell who died four years ago from SADS. She appreciated the fact that SADS UK kept in contact whilst she was struggling to come to terms with his sudden death. This year she ran the British 10K London run. This was a major undertaking for Lisa, as running was not her strong point, especially at school when she would avoid the ‘cross-country’ run at any cost! Skydiving for SADS UK Brave Nikki Kew it taking up the challenge. Good luck Nikki!! Contact SADS UK for details of how you too can take part - Only Daredevils need apply!! Tandem Parachute Jump –Allison Marlow takes the plunge! Sons Jack and Daniel don’t look like they want to let mum Alison go, but she was excited and determined and nothing would stop her now. Without any signs of nerves Allison took to the skies with five other jumpers in her plane. Friend Penny who witnessed the jump said ‘It was quite a spectacle as they jumped out one by one. One thing I know for sure is she thoroughly enjoyed the experience and definitely wants to do it again’ Thank you so much Allison for your courage & efforts & donating a tremendous £416 to SADS UK Edinburgh Marathon – Sunday June 11th 2006 The Edinburgh Marathon has exceeded in popularity in the last few years, with an expected turnout of 15,000 runners in the 2006 event. Over the last few years SADS UK runners have been confronted by an immediate uphill climb towards King Arthur’s Seat right at the beginning of the course and they fared extremely well; to see them at the 7 mile point looking as fresh as daisies was quite heartwarming and unbelievable! After 18 miles the course began to take its toll but the elation felt by those who’ve finished the course and the cheers of spectators in the Meadowbank Stadium made the grueling challenge all the more worthwhile. This year the course director has decided to be kinder to the runners and make the course flatter and therefore faster, yet still taking the runners past some beautiful landmarks. Enormous thanks go to our previous medal winners Michael Brazil, Derek Jolly, John Jolly, Dave Datson & Brian & Sue Hargis. SADS UK have ONE place left for the Edinburgh Marathon on June 11th. If you’d like to take part please call Anne Jolly on 01277 230642 Help Save Lives You too can help save lives by donating just a little time or money. Maybe a gift for a raffle at a fundraising event. Contact SADS UK for ideas. DONATIONS SADS UK send grateful thanks to the following for their kind donations:- R Horsley £25 Mr & Mrs N Dewhurst £195 in memory of Nina Jelen K Macleod £20 Nadine Higginson ran a half marathon in memory of her sister Karen & donated £50 T Herman £10 Deerfold Trust £100 £1,000 legacy in memory of Alice May Thomas Joy Mason in memory of Luke £25 D. Barrett £20 in memory of their grand-daughter Kim Stacey Brenda & Barrie Irons & Herts Motor Co. £150 from sale of welding machine D. Balcombe in memory of Philip Balcombe £25 K Johnson £30 from book sale June Bonnett in memory of Daniel J. Watts £30 Stephen and Britta Homer £100 Eileen Davis £20 £50 Jayne Bishop and partner from sale of bikes Heart Test Ltd £100 £31 from Badhams Pharmacy in memory of Jamie Coffey Langho Girl Guides £82.95 in memory of Rebecca Holt £100 from Frank and Gill Lester in memory of their son Richard Lester £166 from Berni Brosnan and Colleagues at Serco Solutions from raffle of hamper £80 from David and Brenda Brookes from sale of paintings and £20 from their friend G Jones DATES FOR YOUR DIARY March 12th The Beached Boys, Devonshire Park Theatre, Eastbourne April 29th SADS UK Regional Support Seminar, Manchester September 19 - 21 UK Heart Rhythm Congress, Birmingham September 21st 2006 SADS UK Annual Conference, Birmingham – held during UK Heart Rhythm Congress SADS UK – Tel 01277 230642 e-mail: info@sadsuk.org www.sadsuk.org