STATUTORY INSTRUMENTS.

S.I. No. 451 of 2004 .

NATIONAL HAEMOPHILIA COUNCIL (ESTABLISHMENT) ORDER 2004.

S.I. No. 451 of 2004 .

NATIONAL HAEMOPHILIA COUNCIL (ESTABLISHMENT) ORDER 2004.

I, MICHEÁL MARTIN, Minister for Health and Children, (herein referred to as “the Minister”) in exercise of the powers conferred on me by Section 3 of the Health (Corporate Bodies) Act, 1961 ( Section 22 of the Health (Amendment) (No. 3) Act, 1996 ( No. 32 of 1996 ) and adapted by the Health (Alteration of Name of Department and Title of Minister) Order 1997 ( S.I. No. 308 of 1997 ) hereby order as follows:

1. This Order may be cited as the National Haemophilia Council (Establishment) Order 2004.

2. In this Order:

“Chairperson” means the Chairperson for the time being of the Council;

“Council” means the National Haemophilia Council established by this Order.

“Eastern Regional Health Authority” means the authority established under section 7 of the Health (Eastern Regional Health Authority), Act, 1999;

“haemophilia” means the following disorders: inhibitors to factors VIII and IX, inherited deficiencies of factors, I, II, V, VII, VIII, IX, X, XI, XIII and Von Willebrands Disease;

“health board” means--

(a) A board established under section 4 of the Health Act, 1970 , or

(b) An Area Health Board established by section 14 of the Health (Eastern Regional Health Authority) Act, 1999 ;

“Minister” means the Minister for Health and Children;

“officer” means an employee of the Council, unless the context otherwise requires.

THE COUNCIL

3. (1) A body to be known as the National Haemophilia Council is hereby established to perform the functions conferred upon it by this Order.

(2) The Council shall be a body corporate with perpetual succession and a seal and with power to sue and be sued in its corporate name and to hold land.

4. (1) The principal function of the Council shall be to advise the Minister, the Eastern Regional Health Authority, health boards, hospitals and other persons on any matter relating to haemophilia, on its own initiative or at the request of the Minister, the Eastern Regional Health Authority, health boards or hospitals.

(2) Without prejudice to (1) the Council may provide advice relating to:

(i) the care and treatment of persons with haemophilia;

(ii) protocols for treatment of haemophilia;

(iiii) health services (including counselling services) for persons with haemophilia;

(iv) education and training of staff who provide services for persons with haemophilia;

(v) education and health promotion for persons with haemophilia and their families;

(vi) the changing needs of persons with haemophilia, in order to help ensure that health services respond effectively to such changing needs;

(vii) developments arising from research into haemophilia;

(viii) appropriate support services for the families of persons with haemophilia.

(3) The Council may promote its functions through the publication of documents, organisation of conferences and recommending measures to promote the health of persons with haemophilia.

(4) The Council may request advice from any person in relation to the performance of its functions.

5. (1) The Council shall, not later than 30th June of each year, present an annual report to the Minister in relation to the performance of its functions during the preceding year and for the purposes of this provision the period commencing on the date of this Order and ending on 31st December, 2004, shall be deemed to be a calendar year.

(2) The Council shall submit to the Minister such information regarding the performance of its functions as the Minister may from time to time request.

MEMBERSHIP OF THE COUNCIL

6. The Council shall consist of not more than 11 members appointed by the Minister, of whom--

(a) 2 shall be appointed on the nomination of the Irish Haemophilia Society;

(b) one shall be the National Haemophilia Director;

(c) one shall be a consultant haematologist with an interest in paediatric haemophilia;

(d) one shall be a consultant haematologist working outside the functional area of the Eastern Regional Health Authority, who treats persons with haemophilia;

(e) one shall be a registered nurse with an interest in haemophilia;

(f) one shall be a member of a registered profession with an interest in haemophilia;

(g) one shall be nominated by the Chief Executive Officers of health boards;

7. The Minister shall appoint one of the members of the Council to be the Chairperson of the Council.

TERM OF OFFICE

8. The term of office of the Chairperson and of each ordinary member of the Council shall be 3 years from the date of appointment. Members may be appointed for more than one term of office. The Chairperson shall hold office until he or she ceases to be a member of the Council or until the Minister appoints another person to be Chairperson.

9. A member of the Council may at any time resign his or her membership by letter addressed to the Minister and the resignation shall take effect from the date specified therein or upon receipt of the letter by the Minister, whichever is the later.

10. A member shall cease to be a member of the Council on being requested by the Minister to resign.

11. In the event of a casual vacancy arising on the Council, the vacancy shall be filled by appointment by the Minister and where the vacancy arises from a member who was appointed on the nomination of a body referred to in Article 6 the appointment shall be made on the nomination of that body. The person appointed to fill a casual vacancy shall hold office as a member of the Council for the unexpired period of the term of office of the said member.

MEETINGS OF THE COUNCIL

12 (1) The Council shall hold such and so many meetings as may be necessary for the performance of its functions, and shall meet not less than 3 times per annum.

(2) The quorum for a meeting of the Council shall be 5, which shall include at least one member of the Irish Haemophilia Society.

(3) The Council may regulate by Standing Orders or otherwise, its procedures and business.

(4) The proceedings of the Council shall not be invalidated by any vacancy or vacancies among its members, or by any defect in the appointment of the Council or any member thereof.

13 (1) The Chairperson may, at any time, upon giving not less than five working days notice call a meeting of the Council.

(2) If the Chairperson refuses to call a meeting of the Council after a requisition for that purpose, signed by not less than five members of the Council, has been presented to the Chairperson, any five members of the Council may call a meeting of the Council.

(3) If the Chairperson, without so refusing, does not, within seven days of the presentation of a requisition for that purpose signed by not less than five members of the Council, call a meeting of the Council, any five members of the Council may call a meeting of the Council.

(4) For each meeting of the Council:

(a) the Chairperson shall, if present, chair the meeting;

(b) in the absence of the Chairperson, the members of the Council who are present shall choose one of their number by simple majority, to be Chairperson of the meeting;

(c) minutes of each meeting of the Council shall be kept by a person designated by the Chairperson and shall be agreed at the following meeting;

(d) the names of the members present at a meeting of the Council shall be recorded in the minutes of the meeting.

14. (1) All acts of the Council and all questions coming or arising before the Council may be done and decided by a simple majority of such members of the Council as are present and vote at a meeting of the Council.

(2) In the case of equality of votes on any question arising at a meeting of the Council, the person chairing the meeting shall have a second, or casting vote.

(3) A memorandum signed by all the members of the Council shall be effective for all purposes as if it was a resolution of the Council passed at a meeting duly convened, held and constituted.

REMUNERATION

15. (1) A person shall not receive any remuneration for acting as a member of the Council, but members of the Council may be paid travelling and subsistence allowances in accordance with such scales as may from time to time be approved by the Minister, with the consent of the Minister for Finance.

(2) The Chairman may receive such remuneration as the Minister, with the consent of the Minister for Finance, may determine.

COMMITTEES

16. (1) In order to facilitate the discharge of its functions, the Council may establish committees whose functions shall be to assist and advise the Council in relation to the performance of its functions.

(2) Membership of a committee established by the Council may include persons who are not members of the Council.

(3) Any committee so appointed shall act subject to such directions as may be given by the Council, and any expenditure of moneys by such committee shall be subject to the approval of the Council.

(4) A member of a committee established under this Article may be removed from membership by the Council, and the Council may appoint new members to a committee.

(5) The Council may dissolve a committee appointed under this Article.

(6) The acts of a committee established under this Article shall be subject to confirmation by the Council.

FINANCE

17 (1) The Council shall, not later than the 30th day of September in each year, submit to the Minister a statement of its estimated budgetary requirements in respect of the following financial year.

(2) The Minister may pay to the Council, in each year out of moneys provided by the Oireachtas, a grant or grants, of such amount or amounts as the Minister may decide.

(3) The Council shall keep all proper and usual accounts of all moneys received or expended by the Council, including an income and expenditure account and balance sheet and, in particular, shall keep all such special accounts as the Minister may from time to time direct.

(4) The financial year of the Council shall be the period of twelve months ending on 31st day of December in any year and for the purposes of this provision the period commencing on the date of this Order and ending on 31st day of December 2004, shall be deemed to be a financial year.

(5) A statement of accounts of the Council for each financial year shall be prepared and after such preparation be subject to audit by the Comptroller and Auditor General under Section (5) (First Schedule) of the Comptroller and Auditor General (Amendment) Act 1993 .

CHIEF OFFICER

18. (1) There shall be a chief officer of the Council who shall be known as, and is in this Order referred to as “the Chief Officer".

(2) The Chief Officer shall be appointed by the Council and shall hold office for such period and upon such terms and conditions (other than terms and conditions relating to remuneration and allowances for expenses) as the Council may, with the approval of the Minister, determine from time to time.

(3) The terms and conditions relating to the remuneration, superannuation and allowances for expenses of the Chief Officer shall be such as may be determined from time to time by the Minister, with the consent of the Minister for Finance.

(4) The Chief Officer shall carry on, manage and control generally, the administration and business of the Council and perform such other functions as may be determined by the Council.

(5) The Chief Officer shall not be a member of the Council but shall be entitled to attend all council meetings unless the Council otherwise decides.

MEMBERS OF STAFF

19. (1) The Council may, with the approval of the Minister, with the consent of the Minister for Finance, appoint such and so many officers as the Council may, from time to time think proper and in appointing any such officers, the Council shall comply with any directions given by the Minister relating to the procedure to be followed.

(2) The Council shall, subject to the approval of the Minister, with the consent of the Minister for Finance, determine the remuneration and conditions of service (including superannuation) of its officers.

(3) The Chief Officer shall, from time to time, assign such duties as he or she considers appropriate to each officer and each such officer shall perform the duties so assigned.

20. The Council may from time to time engage such consultants or advisers as it may consider necessary for the performance of its functions, and any fees due to a consultant or adviser engaged under this Article shall be paid by the Council out of moneys at its disposal.

SEAL

21. (1) The Council shall, as soon as may be after the establishment day, provide itself with a seal.

(2) The seal of the Council shall be authenticated by the signature of--

(a) the Chairperson of the Council, or some other member of the Council authorised by the Council to act in that behalf, or

(b) an officer of the Council authorised by the Council to act in that behalf.

(3) All courts shall take notice of the seal of the Council, and every document purporting to be an instrument made by the Council and to be sealed with the seal (purporting to be authenticated in accordance with paragraph (2) of this Article) of the Council, shall be received in evidence and be deemed to be such instrument without proof, unless the contrary is shown.

DISCLOSURE OF INTEREST

22. (1) Where the Chairperson, any other member of the Council, the Chief Officer or other officer, a consultant, advisor or other person engaged by the Council, has a beneficial interest in, or material to, any matter which falls to be considered by the Council, he or she shall comply with the following requirements:--

(a) he or she shall disclose to the Council through the Chief Officer, or in the case of the Chief Officer or a member of the Council through the Chairperson, or, in the case of the Chairperson directly to the Council, the nature of his or her interest in advance of any consideration of the matter;

(b) he or she shall neither influence nor seek to influence a decision in relation to the matter;

(c) he or she shall take no part in any consideration of the matter by the Council, save to such extent as the Chairperson, or where the Chairperson has such an interest, a majority of the Council, may permit.

(2) Where a question arises as to whether or not a course of conduct, if pursued by a person, would be a failure by him or her to comply with paragraph (1) of this Article, the question shall be determined by the Council and particulars of the determination shall be recorded in the minutes of the meeting concerned.

(3) Where a disclosure is made to the Council, particulars of the disclosure shall be recorded in the minutes of the meeting concerned.

23. A person shall not, without the consent of the Council, disclose any information obtained while performing duties as a member or officer of, or a consultant or advisor to, the Council or a committee established pursuant to Article 16 of this Order.

LOANS, PURCHASE AND SALE OF LAND ETC

24. For the purpose of the performance of its functions:

(a) The Council shall not borrow money without the prior consent of the Minister.

(b) The borrowing of money by the Council shall be subject to such terms and conditions as may be specified by the Minister.

(c) The Council may acquire land or buildings subject to the approval of the Minister.

(d) The Council may, subject to the approval of the Minister sell, exchange, let or otherwise dispose of any land or buildings vested in it.

(e) The Council may charge fees for services it provides, for publications it produces and for attendance at events it organises.

25. This Order will come into operation on the 22nd day of July 2004.

EXPLANATORY NOTE.

(This note is not part of the Instrument and does not purport to be a legal interpretation.)

The effect of this Order is to establish a Council to advise the Minister for Health and Children, health agencies, and other bodies, on all aspects of haemophilia, on its own initiative or at the request of the Minister.