Introduction documents
On behalf of the Arrhythmia Alliance, we are publishing our Consultation Document for the new chapter of the NSF for Heart Disease, for your interest and information. As you see, this is a draft that is intended to provoke comment and contribution from the UK electrophysiology community and others in the NHS involved in commissioning care. We are all aware that patients with arrhythmias have not received a framework for their care in the way that patients with coronary artery disease and heart failure have over the last 5 years. Now there is the opportunity to change this in the Revision of the NSF for Heart Disease to be announced on 6/3/05.

As you see, voluntary contributions have been made by specialists in the care of patients with arrhythmias, nurses, patients themselves, and their advocates and supporters. The enthusiasm and determination have been impressive since the writing process only started on 7 June 2004, but the document was completed and distributed in time for the DoH consultation deadline of 4/8/04. Consultants from a number of specialties including cardiology, neurology, Accident & Emergency and General Practice also spoke and facilitated the A-A Conference on 1 June 2004 at the Royal College of Physicians, in a spirit of shared collaboration and enthusiasm. Over 140 delegates attended the event, which gave patients pride-of-place in proceedings. The final document itself is very patient orientated.

The result of that conference and getting together of Arrhythmia Stakeholders is the enclosed document, which we very much hope you will find enjoyable and enlightening. There is a great deal of work to do. 500,000 patients suffer with atrial fibrillation. UK pacemaker implantation rates are far behind Western Europe and 28,000 more patients need to be treated each year in the UK to catch up. Many more patients may require implantable defibrillators according to accumulating evidence. In the UK 125,000 patients suffer from supraventricular tachycardia and most could be completely cured. Blackouts are a major drain on healthcare resources, and cause 1% of all hospital admissions, with over 100,00 patients in the UK misdiagnosed with epilepsy.

All these patients need expert care, and in the UK they are often not getting it. The NSF should start to put this right by focussing attention on these patients, drawing resources toward them, (and in many cases simply using them more effectively), and establishing an initiative to grow the arrhythmia workforce. We commend this stakeholders document to you.

List Of Chapters (Adobe PDF format - click to open or right-click on link and select "save target as" to download to your computer).

1	Contents Page
	Contributors
2	Introduction
3	Executive Summary	Managing cardiac Rhythm Disorders in the UK : The Need for Change
4	Spectrum Of Cardiac Arrhythmias	The aim of this chapter is to provide a background to cardiac arrhythmias for a lay audience, to be built upon in the following chapters.
5	Symptoms and Sign of Cardiac Arrhythmias
6	Investigation of Symptoms of Palpitation
7	Dealing With Misdiagnosis of Epilepsy	A patients Story
7b	Patients Story	Julies Story
8	Carers Story	Joels Story
9	STARS - Syncope Trust And Reflex anoxic Seizures	Information on Syncope and Reflex anoxic Seizures, aims of STARS and services offered.
10	Investigation of Blackouts & T-LOC	Causes, diagnosis, management & care, use of technology ,care pathway, investigation standards & management, structuring resources and improving access,awareness and patient information.
11	Medical Management of Arrhythmias	This chapter ets out how the NHS can best use medical approaches in the management of arrythmias especially drug treaments.
12	Treament With Pacemakers	Benefits, economics, identifying patients requiring pacemaker implant and UK implantation rates.
13	The Effects of Supraventricular Tachycardia & What it is Like Being Cured With Ablation	A Patients Story
14	Ablation For Paroxysmal Supraventricular Tachycardia (PSVT)	Definition, impact of PSVT on health, people affected, influence of age on treatment options, assessment of patients, treatment and special clinical situations.
15	Effects of Atrial Fibrillation and What it is Like Being Cured With Ablation	A Patients Story
16	Mangement of Atrial Fibrillation & Other Atrial Tachyarrythmias	Why AFL, AT and AF are an important health problem, evidence based interventions, service models, milestones and measures of progress.
17	The Effects of Ventricular Tachycardia and What it is Like Being Cured With Ablation	A Patients Story
18	Catheter Ablation for Ventricular Tachycardia	Standards & treament models for non-drug therapy excluding device therapy (ICD therapy)
19	Dealing With the Effects of Sudden Death, Heart Failure and an Implanted Device	A Patients Story
20	Our Sudden Cardiac Death Nightmare	A Family Story
21	Prevention of Sudden Death With Drugs and Devices	Effective interventions, service models, milestones and goals and the NHS.
22	SADS - Sudden Adult Death Syndrome UK	Organisation that supports individuals and families who are predisposed to sudden death.
23	Lazarus Device and Sudden Death	Doctors Story
24	Screening For Sudden Death in Adults	Size of problem, inherited disease/chance finding in asymptomatic patients
25	My Hypertrophic Cardiomyopathy Story	A Patients Story
26	Cardiomyopathy Association	Information on the organisation
27	Arrhythmias in Children & Adults With Congenital Heart Disease	Arrhythmias in the child, foetus, child (normal heart structure ), child (abnormal heart structure). Treatment, pacemakers, EPS studies & Ablation.
28	Cardiac Risk in The Young	CRY - charity dedicated to raising awareness of sudden cardiac death in fit, heathly & young (under 35) people; providing information and support.
29	British Cardiac Patients Association (BCPA)	Independent voice of cardiac patients and their families and carers.
30	Role of Hospital Based Patient Support Groups	Benefits, contact methods, support, who needs support?, helping new centres provide quality care.
31	Role of Patient Advocacy (From One Patient to a National Alliance)	Involvement, aims & objectives, communication
32	Models of Care And Provision of Services	Management of Arrhythmias - Implantable devices, Ablation
33	The Arrhythmia Workforce	Pacemaker and ICD variation in UK, workforce issues.
33b	The Arrhythmia Workforce
34	Training Requirements For SPR's in Arrhythmia Management, Pacing and Electrophysisology	Management skills, curriculum for arrhythmia training.
35	Data Collection & Audit of Arrythmias in the UK	Lack of information, databases, standards, pacemakers, EP & Percutaneous Catheter Abalation, diseases & conditions.
36	Useful Contacts	Phone numbers and website addresses
37	Glossary of Definitions