STARS Issue 23, June 2005

JUNE 2005 : ISSUE 23 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION IN SYNCOPES AND REFLEX ANOXIC SEIZURES

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0800 0286362 +44 1789 450564 www.stars.org.uk trudie@stars.org.uk PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD, UK

REFLEX ANOXIC SEIZURES are a type of arrhythmia (heart rhythm disorder) occurring mainly in young children but can occur at any age. The sudden shock of pain, however slight, or indeed any unexpected stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become deathly white, the jaw to clench and the body to stiffen often with legs and arms jerking. After 30 seconds or so the body relaxes and the heart and breathing re­ start. The sufferer may remain unconscious for one or two min­ utes or for well over an hour. RAS is often misdiagnosed as breath­ holding or more seriously as epi­ lepsy.

SYNCOPE (pron: sin­co­pee), also known as Transient Loss of Consciousness (T­LOC) or black­ outs, is a result of the temporary cutting off of the supply of oxy­ genated blood to the brain. The mechanism of the syncope in susceptible individuals includes reflex cardiac standstill (always reversible) commonly following a surprising bump to the head or elsewhere. Recurrent syncope is perhaps one of the most chal­ lenging and, at the same time, most frustrating problems that is encountered in clinical practice.

Also known as: Reflex Anoxic Seizures; Reflex Asystolic Syncope; Neurocardio­ genic Syncope; Neurally Medi­ ated Syncope; White Breath Holding; Pallid Syncope; Anoxic Seizures; Vasovagal Syncope; Valsalva Syncope; Blood Illness Injury Phobia; Blue Breath Hold­ ing; Prolonged Expiratory Ap­ noea.

STARS member Julie Fear, is only just getting used to the prospect of a normal life after having a pacemaker following years of misdiagnosis.. But in March, she was the only patient representative to speak of her experiences at this year’s Coronary Heart Disease Collaborative Meeting, attended by then Health Secretary, John Reid. As regular readers will know, Julie’s pacemaker was fitted after she suffered 27 years of misdiagnosis and difficulties caused by vasovagal syncope.

“I was extremely nervous, I had never done any public speaking, so the whole thing was new to me. When the auditorium was empty it didn't feel so bad but as it started to fill up with all the delegates for the session before me it, suddenly hit me that this was something big! For the first time in my life all the eyes and ears of the medical profession were on me and they had to listen. They couldn't dismiss me because of another patient waiting or because I was a nuisance.”

I have been trying to bury, but I had to tell them my experience, it was my one opportunity I wanted, I needed maximum impact.

Behind me and at the side of me they had photo's of my family on a large screen every few seconds the photo would change, the photos always changed when I was talking about my girls or my parents this made it even more emotional. A couple of times I broke down but I managed to regain my composure and start again, even Trudie shed a tear or two. Finally Trudie read out a letter from my parents, this was how they felt seeing their daughter and granddaughter suffer with this condition. “

Julie is very clear on why she believes it was important to gather the courage to speak before so many people.

“I did it for every STARS member, I wanted every doctor and health care professional to realise that it isn't in our imaginations, that our children are NOT breath holdJulie’s speech, before 1500 delegates was ing or attention seeking, I wanted them to an emotional experience for her and for many realise what effect it has on, us as parents others hearing her. and on siblings. I wanted them to see what “ I had to recall many painful memories that an emotional experience it is not just during an attack but for days after and the dread we feel each day not knowing if today was the day it was going to happen all over again and what if this time they don't recover.”

Julie reports that many doctors later told her they had been shocked by her story.

She also had the opportunity to meet the Health Secretary, John Reid. (The position is now held by Patricia Hewitt MP) She says she hopes that her speech will leave a lasting impression on those present.

“I have been told that a week after the conference, the medical profession were still talking about my story, so lets hope it sticks and perhaps then they will think twice when the next l RAS suffer walks through their door.”

STARS Member, Julie Fear.

Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Sir Roger MOORE, TWIGGY Lawson & John BURTON RACE. Registered Charity No: 1084898

Since our last issue, we have taken part in the second Ar­ rhythmia Awareness Week, which saw the long awaited launch of the new Chapter on Arrhythmias National Service Frame­ work in the NSF for Coronary Dis­ ease. As a result of STARS’ work in this area, I have been invited to sit on New Programme Board to ad­ vise on implementation of the NSF chapter. I have also spoken at sev­ eral conferences from the Scottish Isle of Islay to New Orleans, raising awareness of the conditions that affect STARS members. Earlier this year STARS was also involved in a Blackouts conference at the Royal College of Physicians— keeping our issues high on the doctors’ agenda!

Lots of exciting developments have been hap‐ pening with the STARS web site. If you haven’t had a look recently, please take a few moments to log on to www.stars.org.uk.

We have a new Subscriber Only area where you can download leaflets with the click of a mouse.

We will also be adding more features over the com‐ ing months. You need a password to enter, so if you are up to date with your subs and would like a password, email: trudie@stars.org.uk.

We also have a new page for online sponsors— if you are planning to take part or organise a spon‐ sored event, let us know and we can create a spon‐ sorship form for you where people can sponsor and pay online. We even send out a reminder for peo‐ ple to pay after the event.

If you don’t receive our E‐bulletins, sent out once a month, email us and we can add you to the mailing list—this service includes all the latest STARS news and links to stories and research in the news about syncopes to keep you up to date.

Finally, we have our new STARS wristbands to help raise awareness. See the back page of the newsletter and the enclosed order form for details.

In recognition of our work, STARS came ‘Highly Com­ mended’ in the Glaxo Smith Kline IMPACT Awards demon­ strating excellence in the community. We were also ‘Highly Commended’ in the Beacon Awards prize for Leadership.

We’re hoping planning another Volunteer Day in Novem­ ber and a Family Conference in the autumn. Details will be with you soon.

Lastly, let me welcome our new patron, Chef, John Burton Race. He is most widely known for his TV series ‘Return of the Chef’. John has vasovagal syncope but is able to enjoy life to the full thanks to a pacemaker.

US company, Duska Therapeutics, has begun Phase II trials for a drug to identify patients with syncope due to an abnormally slow heartbeat who may benefit from pacemaker therapy.

Twenty leading medical centres in the US and Canada are expected to take part in the trial of ATPace(TM), a liquid formulation. 300 patients with various types of syncope and 250 control subjects are expected to be enrolled.

Syncope accounts for 3% of all emergency room visits and 6% of hospital stays. In older people it is associated with falls, significant medical costs and reduced quality of life.

As ever, if you need help or just to talk, get in touch.

Trudie Lobban

Hello again! In this issue of the STARS newsletter we have a round up of the new NSF and what you can expect in the coming years. Have a look at the fundraising ideas in this issue—after all, 2005 is the Year of the Volunteer and STARS really needs your help. If you have any other ideas, let us know.

As a parent, I’d like to pass on a personal tip that we have seen work wonders with Giorgio, our RAS son, who is one of life’s daydreamers. (I know many of you have similar children!) We have been giving him an Omega 3 fish oil supplement and we and his teacher have noticed a definite improvement in his concentration and his writing. A similar effect was noted in a recent study on fish oil supplements and schoolchildren you may have seen in the news.

Finally, I’d like to say a big thank you to those who used our STARS online sponsor form to sponsor my husband, Marco, when he ran the London Mara­ thon for STARS. The online system was a great help to us and I would encourage you all to register if you have an event coming up.

Enjoy the newsletter!

Tania Tirraoro, Newsletter Editor.

Welcome to STARS’ newest pa­ tron, Chef, John Burton Race.

John was happy to become a pa­ tron after reading about STARS’ work. He has himself suffered from Vasovagal Syncope and was fitted with a pacemaker some years ago.

The successful treatment means that John is able to energetically run his Devon restaurant, The New Angel, familiar to many after his second TV series, “Return Of The Chef”. The restaurant was recently awarded its first Michelin Star.

2

Daniel had his first seizure at six months old whilst trying to feed him his last bottle and it was over be­ fore I really knew what had happened. Over the next few weeks he had another one again while he was upset. I went to the clinic and explained what had been going on and told that it was tem­ per tantrums.

Daniel’s seizures started becoming more frequent to the extent of two to three a month. I was told again it was temper tantrums. I stopped going to the health visitor because I wasn't getting the help and support I needed then..

The final straw was when my husband Mark went upstairs to check on Daniel. He was banging around in his cot and it had suddenly stopped. He called me upstairs; he had lifted Daniel, who was blue and his eyes had rolled back into his head. He was lifeless.

It was the single most frightening moment of my life.

I thought I was going to lose my little boy. A few min­ utes later Daniel started to stir and cry. He cried for hours.

The next day I was alone with Daniel when he had another seizure in his cot. After he started to come round I lifted him to comfort him. The shock of being picked up put him into another seizure. After these experiences I knew that it wasn't temper tantrums.

I heard that my original health visitor had returned from maternity leave and I was first at the clinic to see her. I explained what had been going on and she told me that it wasn't temper tantrums and made an emergency appointment for the next day with his doctor. His doctor then referred him to the Sick Chil­ dren's Hospital in Edinburgh.

Over the next 16 months he was backwards and for­

“I am overcome with emotion after coming across your site. I have been struggling to find a diagnosis for my two year old daughter for months now.

When I read the description of reflex anoxic seizures I felt like someone had made a video tape of the "episodes" that she has been having..

She has the exact same trig­ gers as were described (fright,

wards to hospital. He ended up having 2 EEG’s and an ECG all of which were clear. He started at­ tending the seizure clinic four monthly, to check on his progress. At the first appointment it was said that there was a possibility of this being RAS. I hadn't hear of it before­ I was just so glad it wasn't epilepsy. But a different registrar disagreed and the next appointment and told us that it was most likely to be epilepsy. Then his third appointment came after a sleep deprived EEG which was clear. The registrar really listened and examined Daniel. As soon as he touched Daniel’s head, Daniel went blue and his eyes started rolling back. We man­ aged to divert the seizure to a near miss. It was then that the registrar said he was 98% sure of it being RAS. His last appointment was just at the end of October when we got to see his Consultant. For the very first time she confirmed that Daniel has RAS. He has been discharged from his clinic for the time be­ ing as his last seizure was in January and going to hospital gets him upset.

We were told that when Daniel’s sister arrived it might cause him to have more attacks due to his routine being out and not getting all of my time spent on him, but so far so good there is no sign of them starting again and he is really has adapted well to life with a new baby and keeps her in line.

I am really lucky to have had a diagnosis in 18 months I know it can take years. The really upset­ ting part was trying to make Daniel understand why he has to go to hospital for these tests. I just could­ n't find the words to make a toddler understand.

Throughout all this time I have had the help and support of a lot of people which has made a hard time a bit easier. I would like to thank Trudie and all at STARS from the bottom of my heart for all the help ad continued support they have given us and also his Health Visitors Wendy McGovern and Jac­ qui Stevens. With all their help and support Daniel has grown up to be a happy normal little boy that I'm so proud to call my son.

Nicola Horne

minor head bump, strong emo­ tion) every single time. I have been running back and forth from the paediatrician, to the ER, to a neurologist, thinking she has epilepsy.

When the tests came back fine I was treated by the profession­ als as though I was losing my mind.

I have never heard of anyone else going through this, and my husband has never been here when this happens” Michelle Darling

3

“I am 14 years old and have RAS. I saw an article in the last newsletter called “Is day­ dreaming" part of RAS?” I thought I should email you to tell you that recently I have been having 'daydreams' in which I am temporarily in an­ other world all together and I don’t see or hear anything go­ ing on around me. So, I think that ' daydreami ng' I S part of RAS” Louise.

Fundraising is vitally important to STARS. Syncope con‐ ditions sadly do not attract big funding from drug companies, and are not ‘fashionable’ causes. But they affect people in a very real and sometimes disabling way. If you think you could help raise funds, but don’t know how, here are a few ideas to get you thinking. * Charity Challenge is the UK's leading adventure travel company specialising exclusively in the organisation, leader‐ ship and administration of inspirational fundraising expeditions. Their expedi‐ tions include treks, mountain bike rides, mountain climbs, white water rafting, sailing, horse riding & Community Chal‐ lenges. They take place all over the world and cover four different difficulty levels, ensuring there really is something for everyone. There are several ways to fund your expedition, but whichever way you choose ‐ you will have the adventure of a lifetime and raise funds for STARS. www.charitychallenge.co.uk * Hydro Active Women's Challenge ‐ 11:00am, Sun‐ day 4 September 2005 (formerly Flora Light Challenge) It's just 5 kilometres, but £5 of your £15 entry fee goes to your chosen charity (just fill in STARS' name and ad‐ dress on your online sponsor form.) as well as any spon‐ sorship you raise. You can run in London, Birmingham or Liverpool, but you need to register soon to make sure you secure a place as it's a popular event. * Great Runs ‐ The Great South Run is in October. If you know someone planning an event, ask them to con‐ sider being sponsored for STARS—you could help them fundraise by getting a fundraising form or registering them on our Sponsor Me! Page. It’s free to register and really works to boost your sponsorship. * How about organising a coffee morning, an eve‐ ning supper or a BBQ, inviting your friends to your home and charging either a £5 entry for as much coffee as they can handle, or 50p a cup and 50p a slice of cake? Don't forget we also have STARS key rings and pin badges you can sell ‐ click here for more details on how to get some. * A simple way to help is to send us a book of first class stamps, which help enormously with our postage costs. If every STARS member sent in just one book of first class stamps every few months, we would be able to cut our costs dramatically (and cut down on time Charles spends in the Post Office!) * If you've been shopping to Calais, how about buying six extra bottles of wine and raffling them off? You can buy raffle tickets in any stationery store ‐ and sell the tickets at £1 a time. If you can't afford to buy six bot‐ tles, ask your friends or family to donate one bottle each. If they buy a raffle ticket too they could win six times what they put in! * Charity Days is an internet service provider. Using their service and nominating STARS as your charity means they will make ongoing donations. * Bright Minds is a mail order catalogue for fantastic education toys and resources. Each order you make with our source code earns up to 25% commission for STARS. If you would like a catalogue, or the source code to order online please email us. * And don’t forget our STARS collection tins too! If you have one you’re filling with loose change, please don’t forget to empty it out and send it what you have collected. Every penny helps!

STARS has benefit­ ted from the efforts of two marathon runners so far this year.

Many thanks to every­ one who helped our London Marathon Runner, Marco Tir­ raoro (left) raise more than £1,000 for STARS. Well done Marco! The total was boosted thanks to the STARS online Sponsor Me! system. The total raised was doubled by company matching by Marco’s employer, Fidelity International.

Well done also to STARS member Guy Cowie (right) who pounded the streets of Holland to raise money for STARS. Guy ran the Rotterdam Marathon in April.

His efforts raised more than £550.

Heartfelt thanks to both of you for your efforts.

If you want to try your hand at fundraising through run­ ning, there are a few ideas on the right of this page to get you going. STARS is not able to provide ‘golden bond’ places, but we can help you raise sponsorship with STARS’ Sponsor Me! Page— see the website for details of how to register.

P A Bennett; E A Beston; R C Blake; P Borrett; S Boxall; P Fairweather; J Fear; C Gemmell; A Hathaway; M Jones; K Moore; M Tirraoro; K Wil‐ liamson; Culter Primary School; Etone School; St Albans R C School; The Kings School.

Thank you to all those who bought and sold STARS Raffle Tick­ ets. The winners are: A Cunningham; J Garside; S Moody; L Gemmell; L Meacher; Pedro; D Jones; A Cook; D Larkin; P Kel­ lock; J Wade; C Sweetnam; Holbrook; Amanda; S Foster; R Poley. Congratulations to you all!

4

Chapter Eight of the National Service Framework for Coronary Heart Disease was published in March 2005. It’s the chapter about Arrhythmias that we’ve all been campaigning for and canvassing your views as to what should be in it. But what’s it all about? Below, we hope we can answer some of your ques­ tions.

What is a National Service Framework (NSF)?

An NSF is a blueprint for provision of services for a particular condition. NSFs exist for illnesses such as cancer, long term conditions and diabetes, as well as for older people and chil­ dren’s services. They set down the standards of services peo­ ple should accept in the NHS and a quality framework against which local services can secure improvements.

Why is there a new Chapter?

The NSF for CHD was published in March 2000, and set down 12 national standards to improve the diagnosis and treatment of people with diseases of their coronary arteries. The NSF has led to huge improvements in care for these people and a significant investment in the facilities to treat them. Coronary disease is different from arrhythmia (heart rhythm problems), and is treated differently by different people. The Department of Health recognised that it might be possible to see similar improvements in people with arrhythmias by widening the scope of the NSF beyond just that of coronary disease.

What is in the new Chapter and how will it affect us?

The Chapter defines certain “Quality Requirements” which describe the principles of care that clinicians and others will use to guide their practice.

Below are parts of the chapter that specifically affect people with syncopes and RAS. What are the specific requirements?

1. Patient Support: People with arrhythmias receive timely and high quality support and information, based on an assessment of their needs. This requirement seeks to ensure that people with arrhythmias receive an appropriate assessment of their needs, including dealing with problems such as anxiety and depression. Every person should receive this support from a named arrhythmia care coordinator. People should also re­ ceive good quality information about their condition, and young people with arrhythmias should receive care appropri­ ate to their age.

Markers of Good Practice: Y People with arrhythmias receive a formal assessment of their support needs and those at significantly increased risk of anxiety, depression or a poor quality of life receive appropriate care.

Y People with long­term conditions receive support in man­ aging their illness from a named arrhythmia care co­ordinator.

YGood quality, timely information about arrhythmic condi­ tions is given by appropriately trained staff.

For children and young people: YEvery child and young person receives age­specific prepa­ ration, treatment, support and follow­up.

YTransition to adult services does not automatically occur at age 16 but takes into account the individual needs and wishes of the young person.

assessment by an appropriate clinician to ensure accurate diagnosis and effective treatment and rehabilitation. This makes sure that people presenting with arrhythmia have their events documented and placed in their hospital re­ cords. It also states definitively which individuals should be referred to a heart rhythm specialist, and sets out stan­ dards for the ongoing treatment of those with arrhythmias.

Markers of Good Practice – Initial Treatment Y All patients receive a hard copy of the ECG docu­ menting their arrhythmia and a copy is placed in their re­ cords.

Y Patients with syncope or any other symptom(s) sug­ gestive of an arrhythmia with either a personal history of structural heart disease or a family history of premature sudden death OR syncope associated with palpitations OR Patients with syncope and pre­excitation OR Patients with recurrent syncope in whom a life­threatening cause has not been excluded OR Patients with unexplained re­ current falls, should ALL be referred to a heart rhythm specialist.

For children and young people: Y Any child with recurrent loss of consciousness, col­ lapse associated with exertion, atypical seizures with a normal EEG or with any documented arrhythmia is re­ ferred to a paediatric cardiologist.

Markers of Good Practice – Ongoing Treatment Y Mechanisms are in place for urgent referral of pa­ tients with sustained or compromising arrhythmias for pri­ oritisation of appropriate treatment.

Y Where further hospital treatment is not recommended, a care plan is agreed between the patient, GP and the arrhythmia care team, including follow up and support as required.

For children and young people: Y Treatments and service delivery for children, and adults with congenital heart disease, are tailored to meet their needs.

Markers of Good Practice Y Individuals who experience episodes of sustained palpitation and/or unexplained impaired consciousness, particularly if repeated or triggered by exercise, have rapid access to cardiac evaluation, including 12­lead and con­ tinuous ECG monitoring and 2D echocardiography.

For children and young people: Y Children and young people who have lost a family member receive suitable bereavement support and, if po­ tentially at risk themselves, appropriate clinical assess­ ment and treatment.

Further reading: www.dh.gov.uk/PolicyAndGuidance www.arrhythmiaalliance.org.uk If the care offered to you fell short of the standards in this new NSF, please get in touch with Arrhythmia Alliance at info@arrhythmiaalliance.org.uk and send a copy to your local MP. Only by applying pressure for change will patients get the best care they de­ serve.

2. Diagnosis and Treatment: People presenting with arrhyth­ mias, in both emergency and elective settings, receive timely

5

The launch of the first seven chapters of the NSF for Coro­ nary Heart Disease five years ago was preceded by and re­ ceived with, a great deal of anticipation, excitement and enthu­ siasm. It was a landmark for coronary heart disease in Eng­ land. (It does not apply to other countries in the UK) The pre­ vention, diagnosis and treatment of heart attacks, angina and heart failure, and the requirement for cardiac rehabilitation brought about major changes in services, resources and edu­ cation of health professionals and the public. The downside has been that it has cost, financially, far more than was ever envisaged and other areas of heart disease, including arrhyth­ mias became ‘Cinderella’ subjects. Being one of the very first NSFs was a big advantage and it also pre­dated the era of NICE (National Institute of Clinical Excellence) guidelines.

The decision to write chapter eight covering arrhythmias and sudden cardiac death was a breakthrough. Unfortunately the launch and publicity has not received the same level of atten­ tion in the medical press as five years ago, and may have passed un­noticed by many. The pre­election press attention focused on one lady’s postponed shoulder operation— in the weeks preceding, the NSF for Renal Disease was launched and there has since been a NSF for Long Term Conditions.

There are many different disease areas all competing for fund­ ing, educational and training opportunities and health care staff to work in the services. All are in short supply, and if you haven’t got a NSF or NICE guideline on the subject then your voice will not be heard. Cinderella has now been invited to the ball – but there is a lot of competition to get noticed.

So this is a new stage in getting the services that patients of all ages need, but there is a long way to go. Specialising in heart rhythm has long been regarded as an unattractive ca­ reer option for cardiologists compared to the more ‘fashionable’ balloons, by­passes and blocked arteries. One survey of doctors currently undergoing specialist training in cardiology supported this view with very few electing to choose to specialise in heart rhythm disorders. Hopefully Chapter Eight will give this field of heart rhythm cardiology the credibility and recognition it deserves and more will choose to specialise in this field of medicine.

Having specialists is absolutely critical. Without them it won’t be possible to train other doctors, nurses and other pro­ fessionals, including technicians, and develop services based on good evidence based care pathways. Other hospital doc­ tors will not come across the best ways of investigating, diag­ nosing and treating patients with arrhythmias and syncope, and will not be learning from ‘best practice’ . This is really important because when someone is admitted as a medical emergency they will be seen by the ‘on call’ team who will probably not be cardiologists. In turn, GPs don’t see their pa­ tients being investigated, diagnosed and treated following good protocols and care pathways. Without the experts other doctors and nurses will not know how to change what they are doing for the better. It is important to note that other specialist areas are experiencing difficulties in appointing consultants and specialist nurses who have the specialist skills and knowl­ edge that are needed.

For older people there is another glimmer of hope. The NSF for Older People was published in March 2001. This contains

a chapter on Falls and a ‘milestone’ or requirement that Falls Services should be set up by April 2005. Hospitals and PCTs (Primary Care Trusts) have had to report on their progress on achieving this milestone. Many areas of the country are struggling (again competing for doctors, nurses and therapists with the right skills and funding) but all will have made moves to establish a service and the importance of falls prevention and assessment is now acknowledged as important.

A number of older people who fall do so because of syncope, arrhythmias and related cardiac conditions. Preventing them from falling again requires investigations and treatment from hearth rhythm specialists. This will start to lead to links being forged with heart rhythm specialists and services being devel­ oped. To properly diagnose and treat these older people re­ quires heart rhythm specialists and the importance of doing this, and the cost of not doing so, is becoming clearer to those within the NHS who are locally responsible for commissioning services. One difficulty is that often a precise diagnosis is not made (a fall is a symptom not a diagnosis) or the same prob­ lem can be given several names and therefore several dis­ ease codes may be used. This results in the true scale of the problem remaining hidden. It has taken years to achieve this level of recognition and degree of change for falls– the wheels within the NHS can move very slowly.

The government is now recognising that there is a small per­ centage of people who have long term medical conditions, needing a lot of social care support, who should be looked after differently. In time it will become clear that a number of these patients have cardiac arrhythmias and they have not been properly investigated and/or treated and to continue in this way is costly in terms of the care they need. This will help to highlight the need to develop services. The new chapter also gives patients and carers some standards of care that in time they should come to expect.

Chapter Eight mentions setting up multi disciplinary clinics for blackouts and/or arrhythmias and innovative new ways of do­ ing things. The need for patient information, education and support is repeatedly mentioned. This needs a few examples of good practice around the country to show the difference these new services can make to patients and show value for money to lead to a more widespread breakthrough. Examples of good practice really do help to accelerate more widespread change.

Unlike previous NSFs there will not be the same level of checks to see how hospitals and PCTs are making progress.

There is a reference to phasing the implementation over the next five years and the inspection body, the Healthcare Com­ mission will have a role in monitoring the quality requirements.

In summary, this is a new stage in getting the right services for patients who have an arrhythmia and/or syncope. There is a long way to go, but now that there is Chapter Eight there are new possibilities. The Heart Team at the Department of Health are committed to seeing the quality improvement and markers of good practice becoming reality in the next few years. Other countries in the United Kingdom will watching and learning from these developments, and change will un­ doubtedly follow in time. It will take time but a new era is be­ ginning.

6

The cardiologist took about five minutes to diagnose Claire with deglutition syncope. He explained that the electrical sys­ tem in her heart malfunctioned sometimes while she was eat­ ing causing half of her heart to stop beating (heart block).

Structurally, her heart was perfect as the EKG and a scan showed. We had never heard of this condition, but fainting seemed to be much better than epilepsy!

Claire was given a 24­hour event recorder that recorded her heart while we kept a written record of her activities. We learned that Claire was having 2­3 second heart pauses with­ out exhibiting any symptoms. Our cardiologist told us that dur­ ing her faints, her heart pausing was much longer which con­ cerned him and suggested Claire be fitted with a pacemaker.

Again, we were shocked. A second opinion from another car­ diologist confirmed that a pacemaker was the only treatment for this kind of syncope – drugs wouldn't work. We also inves­ tigated whether a slight reflux problem could be contributing to the heart block, but a battery of tests ruled that out.

My internet searches revealed that swallowing­induced faint­ ing was rare, especially among children. The lack of informa­ tion was incredibly frustrating. Then I found Trudie and STARS. The information and resources she gave me were invaluable! Trudie shared Claire's case with several doctors who gave me a variety of perspectives on Claire's condition.

My husband and I debated over the pacemaker for months.

Claire hadn't fainted in a year, but she was regularly having 2­ 3 second heart block. What scared us even more was it hap­ pened a couple of times when she wasn't eating. Evidently, sometimes eating would tip Claire over the edge into fainting.

We finally agreed to have the pacemaker fitted when our doc­ tor told us he believed her heart block would get worse as she grew older. We had visions of Claire fainting while driving and crashing or hitting her head and ending up with brain injury (something our cardiologist had seen). So, just after her sev­ enth birthday, Claire got her pacemaker and she hasn't had any problems since. Currently her pacemaker kicks in 0.6 per­ cent of the time, which works out to be roughly every three minutes. She has adjusted well and is happy that she doesn't have to sit in a special chair in the school lunch room (to pre­ vent her from being injured if she falls). My husband and I don't have to worry and watch her like hawks during meals.

We are profoundly grateful that we had a neurologist who lis­ tened to us and sent us to a cardiologist relatively early in the process. When we realized how many people are misdiag­ nosed with epilepsy, we are so grateful that we didn't have to walk to that difficult road for very long.

During this whole process we've learned a lot about fainting and medical care in the United States. Luckily we have excel­ lent medical insurance. Without that, Claire's story would have been quite different. We also learned how much doctors don't know, and how much we have to educate ourselves. The ER doctors were caring and professional but relied on our descrip­ tion of events too much. We called the episodes “seizures” so we were tracked to neurology. I think if we had called the epi­ sodes “faints,” we would have immediately been tracked to cardiology. Again, I have to thank Trudie and STARS. I have­ n't found an organization like STARS in the US, so I hope one day Trudie might start something over here!

Mary Dickson Burke

Our daughter Claire was five years old when she fainted for the first time.

One evening two years ago, Claire fell into my arms during dinner. She simply stared and fell over. I didn't understand what was happening, but she recovered quickly and wanted to finish her dinner. My husband and I were alarmed, but she recovered quickly and even wanted to finish eating. As she seemed to be perfectly normal we attributed the incident to just being a kid. My husband did tell me something similar had hap­ pened a couple of months earlier, but at the time he thought Claire was just playing around.

The next day things grew more serious. During lunch, Claire was eating when again she stared off into space and then fell over. This time she wasn't so lucky, and she hit her head on the ceramic tile floor. Fortunately, all she suffered was a bump on the head but this time, I knew something was very wrong so I took her to our local children's hospital.

I described what happened to the doctors as a “seizure,” so the ER doctors brought in neurologists. My husband and I had no idea what a faint looked like except for what we had seen in old movies. What Claire did looked nothing like that. She didn't turn grey or clammy. She simply stared for a few seconds and then fell over. She recovered quickly each time and wanted to continue eating. The doctors gave Claire a CAT scan (normal) and hyperventilated her. When she almost passed out from that test, they diagnosed absence epilepsy and offered us the choice of two powerful drugs. We were devastated; epilepsy had never crossed our minds.

We decided to hold off on medicating Claire until we knew more about the medicines. We made an appointment to see another neurologist that week who agreed with that but recom­ mended an EEG and other tests which were all negative for epilepsy. Claire hadn't had an episode in the two months she had been having the tests and so we told neurologist we were sure everything was over and we would never see him again.

Of course, the next week I was proven wrong. Claire collapsed while eating dinner. She started staring and then fell out of her chair. She described feeling as if her head were “vibrating.”

We took her back to the neurologist the next day. He told us he suspected she was having seizures deep inside her brain but said the only way to verify it was exploratory surgery on her brain, which definitely wasn't called for. He couldn’t explain why these episodes happened only while Claire was eating, but suggested we take Claire to a cardiologist.

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My name is Jessica and I am 10 years old. I had my first RAS attack at 3 days old so I don‛t know what it‛s like not to have RAS. I was initially diagnosed as having epilepsy and the medicine they gave me made me feel sleepy all the time. It took until I was 7 to get the RAS diagnosis.

This is what it‛s like for me living with RAS: I feel scared when I have had an attack because feel all dizzy and wobbly. One of my worst attacks was when I was at Beavers. I was playing a game of tag and tripped over. When I woke up I was extremely frightened because I did not know where I was and what had happened to me. After an attack all I want is my mum. Sometimes I get worried when I go swimming someone is going to splash me with water and make me jump, or if I go to a party or somewhere I haven‛t been before I get nervous. At school I play netball and I am afraid that the ball will hit me or someone could bump into me and I could fall over and have an attack. If I have an attack at school I am more worried because my mum or dad are not there.

Y I wish..... the doctors, and nurses would listen more to what me or my parents say about RAS then maybe they would realise it‛s not as straight forward or simple as they think and that I am not a naughty or horrid girl trying to get my own way by “making “ the attacks happen.

Y I wish….. I didn‛t have RAS because it is scary and everybody asks me about it. When I go to parties at indoor play areas or swimming my mum has to stay and I get teased about not being able to go without my mum.

Y If only...... the doctors had listened to my mum and dad at the beginning. All of our lives would have been much better sooner. Seven years was a long time to wait to be listened to. If it wasn‛t for my mum looking for a reason for my attacks I don‛t think I would know now because the doctors were not interested. Also I wouldn‛t have had to take medicine I didn‛t need to.

Y I would like..... to be able to go anywhere I wanted and do anything I want to without my mum with me or being worried about having an attack.

Y My mum and I........ would love to see all children who present with the same or similar symptoms to mine get a diagnosis first time.

What's 'shining light on Blackouts?

Thousands people suffer from syncopes/ blackouts and Reflex Anoxic Seizures ­ yet the condition is still a mystery to many in the medi­ cal profession. We hope that by wearing a STARS wristband, you can help raise awareness for the conditions that blight the lives of so many. We can also send you wallet sized infor­ mation cards that you can give to people who express an interest in finding out more.

Why should I support 'shining light on Blackouts?

Supporting 'shining light on Blackouts' will help everyone with syncopes and RAS. The new NSF chapter on arrhythmias means that now, more than ever, is the time to make sure people who suffer with the conditions, whether they have been diagnosed or not, get the right treatment and care. The more your GP, local hospital A & E department, health visitor, schools and work­ place know about blackouts, the easier life will be for those affected now and in the future.

How can I get involved?

It's easy to support the campaign:

·

Order STARS wristbands for yourself, your family and friends. They cost £1 each plus £1 postage and packing per order. We will include printed information about Syncope with each band.

·

If you need more leaflets to give to your GP surgery / school / etc, you can either download them from the website, or contact us via phone on 0800 0286362 or email trudie@stars.org.uk

·

Order wristbands to sell at an event you are planning or involved with.

·

Ask your company/school/NCT group or other group you are involved with for sup­ port by allowing you to mount a small dis­ play on a table with leaflets and wristbands for sale. We can provide you with a STARS collection tin as an 'honesty box' to collect your money.

OK, What do I do now?

To order STARS wristbands, visit our online or­ der page on the STARS website. If you aren’t online, call us on 0800 0286362, or send your cheque with the enclosed order form.

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