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Make provision about screening for conditions leading to sudden cardiac |
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death in the young; and for connected purposes. |
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Be it enacted by the Queen’s most Excellent Majesty, by and with the advice and |
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consent of the Lords Spiritual and Temporal, and Commons, in this present |
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Parliament assembled, and by the authority of the same, as follows:— |
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1 | Action to be taken following a sudden death |
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(1) | If a post mortem undertaken following the sudden death of a young person, |
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(a) | unable to identify the cause of death, or |
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(b) | identifies the cause of death as a cardiac disease that has a genetic basis, |
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| the pathologist who carried out the post mortem shall append to the post |
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mortem report a pro forma and a statement recommending that first degree |
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relatives of the deceased young person be screened to see if they have a cardiac |
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(2) | Once the GP of the deceased young person has received the post mortem |
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report and appendices he shall attempt to contact first degree relatives of the |
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deceased and invite or recommend that they be screened to see if they have a |
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(3) | The minimum requirements of the pro forma and statement under subsection |
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(1) are prescribed in the Schedule. |
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(1) | Where a young person who— |
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(a) | has the relevant symptoms, or |
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(b) | has a first degree family member who, at under 40 years of age, has or |
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had a cardiac disease that has or had a genetic basis, |
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| presents himself to his GP, the GP shall advise him of the desirability of |
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consulting a relevant specialist. |
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(2) | For the purposes of subsection (1) the relevant symptoms are breathlessness |
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disproportionate to activity, palpitations, chest tightness on exertion, and |
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frequent faintness or giddiness. |
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3 | The role of the specialist |
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(1) | Where a relevant specialist finds that a young person has a cardiac disease that |
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has a genetic basis, the specialist shall— |
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(a) | advise the young person that it would be desirable for his first-degree |
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relatives to consult their GPs, and |
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(b) | issue to the young person a letter for his first degree relatives to give to |
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their GPs if they so wish. |
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(2) | The letter issued under subsection (1) shall state that a first degree relative of |
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the GP’s patient has a cardiac disease that has a genetic basis and it would be |
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desirable for the patient to be referred to a relevant specialist. |
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| “cardiac disease that has a genetic basis” means a cardiac disease that |
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close relatives are likely to suffer from, which includes but is not |
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limited to hypertrophic cardiomyopathy, coronary artery anomalies, |
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arrhythogenic right ventricular cardiomyopathy, Long QT/Brugada’s |
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syndrome, Marfan’s, mitral valve prolapse, Wolfe-Parkinson-White |
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syndrome, dilated cardiomyopathy and premature coronorary artery |
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| “relevant specialist” means a person with clinical or academic knowledge |
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of conditions predisposing to arrhythmia and sudden cardiac death in |
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| “young person” means a person under 35 years of age. |
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Statement and Pro forma under section 1 |
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1 (1) | The statement under section 1 shall indicate that— |
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(a) | a young person had recently died a sudden death and that the post |
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(i) | been unable to identify the cause of death, or |
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(ii) | identified the cause of death as a cardiac disease that has a |
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(b) | it would be desirable for first degree relatives to consult their GPs. |
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(2) | The following pro forma shall accompany the statement— |
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| Pro forma for next of kin of suspected cardiac deaths |
| | | | To: [NAME OF NEXT OF KIN] |
| | | | This form is sent whenever a young person dies suddenly. A |
| | | | proportion of sudden deaths are caused by underlying heart |
| | | | problems wth a genetic basis and therefore run in families. It is |
| | 15 | | possible that [NAME OF DECEASED] suffered from an |
| | | | underlying heart problem that may be genetic, so it is desirable |
| | | | that their parents, children and full siblings be screened for this |
| | | | condition. It is recommended that they present a copy of this |
| | | | | | 20 | | This form has been sent by a pathologist, [NAME OF |
| | | | PATHOLOGIST], who carried out an autopsy of [NAME OF |
| | | | DECEASED]. You can contact the pathologist at [ADDRESS |
| | | | AND PHONE NUMBER OF PATHOLOGIST]. |
| | | | The autopsy found that [RESULTS OF AUTOPSY, INCLUDING |
| | 25 | | THE NAME OF SUSPECTED CONDITION]. |
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Cardiac Risk in the Young (Screening) Bill |
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To make provision about screening for conditions leading to sudden cardiac |
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death in the young; and for connected purposes. |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | Ordered, by The House of Commons,
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| | | | to be Printed, 7th January 2004. |
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© Parliamentary copyright House of Commons 2004
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Applications for reproduction should be made in writing to the Copyright Unit,
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Her Majesty’s Stationery Office, St. Clements House, 2-16 Colegate, Norwich, NR3 1BQ
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PUBLISHED BY AUTHORITY OF THE House of Commons
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LONDON: THE STATIONERY OFFICE
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Printed in the United Kingdom by
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The Stationery Office Limited
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