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Cardiac Risk in the Young (Screening) Bill


Cardiac Risk in the Young (Screening) Bill

1

 

A

Bill

To

Make provision about screening for conditions leading to sudden cardiac

death in the young; and for connected purposes. 

Be it enacted by the Queen’s most Excellent Majesty, by and with the advice and

consent of the Lords Spiritual and Temporal, and Commons, in this present

Parliament assembled, and by the authority of the same, as follows:—

1       

Action to be taken following a sudden death

(1)   

If a post mortem undertaken following the sudden death of a young person,

is—

(a)   

unable to identify the cause of death, or

(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

mortem report a pro forma and a statement recommending that first degree

relatives of the deceased young person be screened to see if they have a cardiac

disease.

(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

deceased and invite or recommend that they be screened to see if they have a

cardiac disease.

(3)   

The minimum requirements of the pro forma and statement under subsection

(1) are prescribed in the Schedule.

15

2       

The role of the GP

(1)   

Where a young person who—

(a)   

has the relevant symptoms, or

(b)   

has a first degree family member who, at under 40 years of age, has or

had a cardiac disease that has or had a genetic basis,

20

   

presents himself to his GP, the GP shall advise him of the desirability of

consulting a relevant specialist.

 
Bill 1953/3
 
 

Cardiac Risk in the Young (Screening) Bill

2

 

(2)   

For the purposes of subsection (1) the relevant symptoms are breathlessness

disproportionate to activity, palpitations, chest tightness on exertion, and

frequent faintness or giddiness.

3       

The role of the specialist

(1)   

Where a relevant specialist finds that a young person has a cardiac disease that

5

has a genetic basis, the specialist shall—

(a)   

advise the young person that it would be desirable for his first-degree

relatives to consult their GPs, and

(b)   

issue to the young person a letter for his first degree relatives to give to

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

the GP’s patient has a cardiac disease that has a genetic basis and it would be

desirable for the patient to be referred to a relevant specialist.

4       

Interpretation

(1)   

In this Act—

15

   

“cardiac disease that has a genetic basis” means a cardiac disease that

close relatives are likely to suffer from, which includes but is not

limited to hypertrophic cardiomyopathy, coronary artery anomalies,

arrhythogenic right ventricular cardiomyopathy, Long QT/Brugada’s

syndrome, Marfan’s, mitral valve prolapse, Wolfe-Parkinson-White

20

syndrome, dilated cardiomyopathy and premature coronorary artery

disease;

   

“relevant specialist” means a person with clinical or academic knowledge

of conditions predisposing to arrhythmia and sudden cardiac death in

the young; and

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“young person” means a person under 35 years of age.

 

 

Cardiac Risk in the Young (Screening) Bill
Schedule — Statement and Pro forma under section 1

3

 

Schedule

Section 1

 

Statement and Pro forma under section 1

1     (1)  

The statement under section 1 shall indicate that—

(a)   

a young person had recently died a sudden death and that the post

mortem had either—

5

(i)   

been unable to identify the cause of death, or

(ii)   

identified the cause of death as a cardiac disease that has a

genetic basis, and

(b)   

it would be desirable for first degree relatives to consult their GPs.

      (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

 

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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

 
 

form to their GP.

 

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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

 

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THE NAME OF SUSPECTED CONDITION].

 
 

 

 

Cardiac Risk in the Young (Screening) Bill

 
 

A

Bill

To make provision about screening for conditions leading to sudden cardiac

death in the young; and for connected purposes.

 

Ms Dari Taylor,

 
 

supported by

 
 

Jim Dobbin, Kevan Jones, Shona McIsaac,

 
 

Mr David Drew, Ms Meg Munn, Andy Burnham,

 
 

Jean Corston, Dr Julian Lewis, Mr Eric Pickles,

 
 

Dr Vincent Cable and Mr Nigel Jones.

 
   
 

Ordered, by The House of Commons,

 
 

to be Printed, 7th January 2004.

 
 

© Parliamentary copyright House of Commons 2004

 

Applications for reproduction should be made in writing to the Copyright Unit,

 

Her Majesty’s Stationery Office, St. Clements House, 2-16 Colegate, Norwich, NR3 1BQ

 


 

PUBLISHED BY AUTHORITY OF THE House of Commons

 

LONDON: THE STATIONERY OFFICE

 

Printed in the United Kingdom by

 

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Bill 19(xxxxxx)53/3
 

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