Northern Ireland Assembly
Wednesday 5 June 2002
The Assembly met at 10.30 am (Mr Speaker in the Chair).
Members observed two minutes’ silence.
Siting of a Telecommunications Mast
Mr Alban Maginness has begged leave to present a public petition in accordance with Standing Order 22.
Mr A Maginness:
I beg leave to present to the Assembly a petition signed by over 1,000 North Belfast constituents objecting to a planning application to site a telecommunications mast at 138 Somerton Road, Belfast. The petition cites the potential health hazards, the loss of visual amenity and the adverse impact on the general environment as good reasons for opposing the mast. I support the campaign and present the petition to you, Mr Speaker, for forwarding to Mr Nesbitt, the Minister of the Environment.
Mr A Maginness moved forward and laid the petition on the Table.
I shall forward the petition to the Minister of the Environment and a copy to the Chairperson of the Committee for the Environment.
On a point of order, Mr Speaker. I notice from Hansard that after the debate on Tuesday 28 May on one elected position, one Member managed to take the subject of the debate to its logical conclusion and have his name recorded in both Lobbies. I refer to Mr McNamee who, according to Hansard, contrived to vote both for and against the motion.
I shall look into the matter, but there is nothing to prevent a Member from voting in both Lobbies. In fact, if a Member concludes that he has voted in the wrong Lobby, the only way of correcting that is to negate that vote by voting in the other Lobby.
I shall, however, check whether this is an error in the Hansard record or, perhaps, the first time that a Member has availed himself or herself of the opportunity of voting more than once — a practice not entirely unknown in Northern Ireland outside of the Assembly Chamber.
Mr J Kelly:
Further to that point of order, Mr Speaker. How do Members express their abstention from a vote? Pat McNamee’s understanding was that, to abstain from voting, Members must vote in both Lobbies. That was the reason for his decision.
The Member is absolutely correct. The only way to ensure that an abstention is recorded is to vote in that way. There have been those in the past, as the Member will recall, who have gone to some very considerable lengths to abstain in person. It is something that is not unknown in certain parts of Northern Ireland either.
I have received notice from the Minister of Health, Social Services and Public Safety that she wishes to make a statement on the outcome of the human organs inquiry.
Mr Paisley Jnr:
On a point of order, Mr Speaker. Members have only just received copies of the bulky report and the statement on the outcome of the human organs inquiry, and there has not been appropriate time to consider them. Is there a mechanism that allows more time to be given to Members prior to —
Order. There is no requirement on a Minister to provide material in advance of a statement. The only requirement is for a Minister to present the intention and the subject of the statement to the Speaker two and a half hours in advance so that the Speaker can decide whether to permit it. The purpose of most statements is to make available new material that the Assembly may wish to debate on foot of a normal motion. It is not possible to accommodate the Member’s request.
The Minister of Health, Social Services and Public Safety (Ms de Brún):
Go raibh maith agat, a Cheann Comhairle. Is mian liom ráiteas a dhéanamh ar thoradh an fhiosrúcháin ar orgáin dhaonna. I ndiaidh domh an ráiteas seo a dhéanamh, scaipfear tuarascáil an fhiosrúcháin chuig Comhaltaí, chuig na teaghlaigh a tháinig chun tosaigh ar lorg freagraí, chuig an tSeirbhís Sláinte agus chuig an phobal i gcoitinne.
Inniu, tá an tuarascáil ar fhiosrúchán na n-orgán daonna á foilsiú ina hiomláine agam. Agus sin á dhéanamh agam, ba mhaith liom mo bhuíochas a ghabháil leis an Uasal John O’Hara QC, a bhí ina chathaoirleach ar an fhiosrúchán, do bhaill an fhiosrúcháin, don Ollamh Eithne McLaughlin agus do Paddy Kelly Uas, as a dhíograisí agus a bháúla a bhí siad agus iad i mbun an fhiosrúcháin thromchúisigh seo. Tá sé 15 mhí ó shin nach mór ó d’fhógair mé go raibh fiosrúchán na n-orgán daonna á chur sa tsiúl agam. Ag an am, rith sé liom chomh tábhachtach agus a bhí sé beart a dhéanamh go práinneach le tacú le cearta agus le mianta na dteaghlach sin ar mór an méala leo bás duine clainne agus lena chinntiú nach ndéanfaí neamart ná faillí iontu. Ba mhian liom chomh maith muinín an phobail as na nósanna imeachta iarbháis a chothú in athuair.
Mar gheall ar an chleachtas a bhíodh ann maidir le baint as agus coinneáil orgán, ní bhíodh deis ag teaghlaigh ceadú a bhí bunaithe ar an eolas a thabhairt, rud a mhéadaigh go mór ar an mhéala agus ar an fhulaingt. Chuaigh an cleachtas a bhíodh ann sa réimse seo i gcion ar bheatha móran gnáthdhaoine anseo. Ba le deireadh a chur leis an chleachtas a bhíodh ann san am a chuaigh thart agus le creat daingean a cheapadh a bheadh mar mhúnla don chleachtas sa todhchaí a chuir mé fiosrúchán reachtúil ar bun. Tasc tromchúiseach a bhí san fhiosrúchán seo agus tá mé faoi chomaoin ag foireann an fhiosrúcháin, a thug go bríomhar, macánta báúil faoin dúshlán. D’obair siad go gníomach i gcomhar leis na teaghlaigh sin ar bhain na seanchleachtais dóibh, agus rinne siad gach dícheall le teacht ar na fíorais agus le teacht ar bhealaí le cleachtas níos fearr a cheapadh don todhchaí.
Is cuntas cothrom, tomhaiste tuisceanach é an tuarascáil seo agus molaim go hard í. Ní amháin go ndírítear aird ar leith inti ar na heasnaimh a bhí ar an chleachtas san am a chuaigh thart, ach tugtar faoi chleachtas a fheabhsú, faoi chearta agus chosaintí nua a chur i bhfeidhm lena chinntiú go mbeidh seirbhís againn a mbeidh lánmhuinín ag an phobal uilig aisti. Cuirtear ceisteanna sa tuarascáil seo faoinár gcumas mar sheirbhís comhairliú agus tacaíocht chuí a sholáthar do dhaoine agus duine ceana dá gcuid ag fáil bháis. Cuirtear ceisteanna inti chomh maith faoi chumas ár seirbhísí sláinte freagairt go práinneach, báúil cuí nuair a tharlaíonn géarchéim nach bhfuiltear ag súil léi.
I ndiaidh domh tuarascáil an fhiosrúcháin a bhreithniú go cúramach, tá sé de rún agam a cuid moltaí a chur i bhfeidhm ina n-iomláine. Is mian liom aird a tharraingt ar chuid de na príomhréimsí i moltaí na tuarascála.
Ba chóir an tAcht um Fhíochán Daonna a aisghairm go huile agus go hiomlán. Glacaim go hiomlán le moltaí an fhiosrúcháin gur chóir reachtaíocht úr a chur in áit na reachtaíochta atá ann faoi láthair sa réimse seo. Tá mé ag déanamh bearta láithreacha le moltaí i leith reachtaíocht úr a thabhairt isteach de réir mar a mholtar sa tuarascáil. Tá sé de aidhm agam iad a bheith i gclár reachtaíochta an Tionóil do 2003-04.
Ba chóir don Roinn treoirlínte a eisiúint ar úsáid blocanna agus sleamhnán sa todhchaí taobh istigh de shé mhí agus a dhearbhú nár chóir aon taighde nua a bhaineann le hábhair dhaonna a cheadú gan cead follasach a fháil. Roimh dheireadh na bliana, eiseoidh mé treoirlínte i gcomhar leis na coistí um eitic taighde maidir le húsáid blocanna agus sleamhnán. Eiseoidh mé fosta socruithe stiúracha do choistí um eitic taighde níos moille i mbliana. Faoi na socruithe seo beidh gá roimh ré le ceadú eitice le haghaidh aon taighde chliniciúil bheartaithe ina mbeidh úsáideoirí na Seirbhíse Sláinte páirteach agus atá á dhéanamh ag aon ollscoil nó ag aon fhoireann de chuid na Seirbhíse Sláinte.
Ba chóir do iontaobhais foirmeacha toilithe aonfhoirmeacha agus bileoga eolais a thabhairt isteach. Caithfear na dréachtaí deiridh a aontú le grúpa tagartha na ngaolta. D’iarr mé ar mo chuid feidhmeannach foirmeacha nua toilithe a ullmhú chomh maith le cáipéisí treorach agus cáipéisí comhairle, agus foilseofar iad roimh dheireadh 2002.
Chomh maith leis seo, aithním an ról luachmhar atá ag grúpa tagartha na ngaolta, a bhunaigh mé go príomha le tacaíocht a chur ar fáil do thuismitheoirí a bhfuair leanbh dá gcuid bás; ba sin a bhí ar intinn agam nuair a chuir mé an fiosrúchán ar bun. Déanfaidh mé leathnú ar a ról de réir mholtaí na tuarascála. Chuige sin, déanfaidh mé foirmealú ar an mhaoiniú a thugtar dó agus cuirfidh mé leis an am a bhí leagtha amach dó le go gclúdóidh sé an tréimhse idir seo agus teacht i bhfeidhm na reachtaíochta úire. Déanfar athmhúnlú ar théarmaí tagartha an ghrúpa a léireoidh an ról a bheidh aige san am atá le teacht.
Caithfidh iontaobhais a chur in iúl don Roinn gach bliain go bhfuil cleachtas iarbháis á chur i bhfeidhm de réir phrionsabail na tuarascála. Iarrfaidh mé forógra bliantúil ar iontaobhais maidir leis seo; agus déanfaidh mé mo mhacnamh ar cheanglas reachtúil a dhéanamh de seo faoin Acht um Fhíochán Daonna úr.
Ba chóir don Roinn tabhairt faoi fheachtas ilmheáin dhá bhliana le cur in iúl do thuismitheoirí gur féidir leo blocanna agus sleamhnáin a iarraidh ar ais. Coimisiúnóidh mé feachtas den chineál i gcomhar le grúpa tagartha na ngaolta a gcuirfear tús leis san fhómhar.
Tá moltaí ar leith ann maidir le feachtais oideachais agus faisnéise, lena n-áirítear: an Roinn an pobal a chur ar an eolas faoi scrúduithe iarbháis; oiliúint éigeantach á cur ar fhoireann chnáimhseachais, ar fhoireann nua-naíoch agus ar fhoireann phéidiatraiceach maidir le brón agus méala othair; agus socruithe ionduchtaithe do dhochtúirí nua, lena n-áirítear oiliúint éigeantach ar bhealaí le toiliú láneolach a fháil.
Beidh mo chuid feidhmeannach ag obair go díreach le Coláiste Ríoga na Paiteolaíochta, Ollscoil na Ríona, Béal Feirste, le Comhairle na nIarchéimithe um Oideachas agus Oiliúint TÉ agus le heagraíochtaí oiliúna eile agus le grúpa tagartha na ngaolta. D’iarr mé orthu teacht aníos le moltaí daingne i ngach ceann de na réimsí seo faoi fhómhar na bliana seo. Tá rún daingean agam moltaí an fhiosrúcháin faoi chúrsaí oiliúna a chur i bhfeidhm agus clár oideachais/feasachta pobail a cheapadh le toiseacht níos moille i mbliana.
Agus an tuarascáil agus a cuid moltaí á mbreithniú agam, chuaigh sé i gcion go mór orm an méid a bhí le rá san fhiosrúchán in alt 8.8, ainneoin go n-aithnítear an tionchur an-diúltach a bhí ag an chonspóid, ar sholáthar seirbhíse cuí paiteolaíochta:
Is de dhlúth is de inneach soláthar cuí Seirbhíse Sláinte Náisiúnta iad scrúduithe iarbháis. Tá tábhacht ag baint leo don phobal i gcoitinne, ach i gcás teaghlach áirithe tá siad ríthábhachtach.
Is fearr inniu ná riamh an córas atá i bhfeidhm anseo le toiliú le haghaidh scrúdú iarbháis a fháil ó ghaolta agus le heolas, comhairle agus comhairliú a thabhairt do na gaolta sin.
Tá ról barrthábhachtach ag scrúduithe iarbháis agus ag coinneáil blocanna agus samplaí fíocháin — ach ceadú cuí a fháil — má tá togha an chleachtais chliniciúil le forbairt agus má tá feabhas le cur ar shláinte othar. Luaitear samplaí sa tuarascáil den dóigh ar cuireadh chun cinn eolas cliniciúil agus ar sábháladh beatha naíonán de bharr cleachtais den chineál seo.
Luaitear san fhiosrúchán agus luaigh roinnt teaghlach a dteachaidh coinneáil orgán i gcion orthu an imní a bhí orthu nach raibh na socruithe ann le déileáil leis an tuile fiosrúchán a tháinig amach i ndiaidh an t-ábhar seo a theacht chun solais an chéaduair; agus aithním an imní sin. Tá sé tábhachtach go ndéanfaidh an taithí seo ár súile dúinn sa tSeirbhís Sláinte. Chuige sin, tá mé ag scríobh chuig cathaoirligh uilig na n-iontaobhas á iarraidh orthu athbhreithniú a dhéanamh ar na socruithe atá acu le tabhairt faoi ghéarchéimeanna nach bhfuiltear ag súil leo lena chinntiú go bhfuil pleananna acu freagar láithreach, éifeachtach cuí a thabhairt ar a leithéid de éigeandáil thobann. Beidh dearbhú air seo á iarraidh agam ina bhforógra bliantúil faoi chleachtas iarbháis. Tá rún agam plean gníomhaíochta a dhréachtú ina leagfar amach sceideal do na gníomhaíochtaí atá luaite thuas, agus cuirfidh mé Coiste Sláinte an Tionóil ar an eolas faoi sin sna seachtainí amach romhainn.
Tríd is tríd, creidim gur freagra cuimsitheach ar thuarascáil an fhiosrúcháin iad na gníomhaíochtaí a chuir mé os coinne an Tí inniu. Molaim an tuarascáil agus iarraim ar Chomhaltaí a thabhairt dá n-aire na gníomhaíochtaí atá beartaithe agam lena moltaí uilig a chur i bhfeidhm.
I wish to make a statement on the outcome of the human organs inquiry. Following the statement, the inquiry’s report will be circulated to Members, to the families who came forward seeking answers, to the Health Service and to the public.
Today, I am publishing in full the report of the human organs inquiry. In doing so I record my thanks to the chairperson of the inquiry, Mr John O’Hara QC, and to its members, Prof Eithne McLaughlin and Ms Paddy Kelly, for undertaking this difficult task with rigour and sensitivity.
It is nearly 15 months since I announced the establishment of the human organs inquiry. At the time, I was struck by the importance of taking urgent action to support the rights and expectations of families who had been touched by the intense sadness of the death of a loved one and to ensure that they were not set aside or ignored. I also wanted to rebuild public confidence in post mortem procedures. Past practice, involving the removal and retention of organs, did not enable families to give informed consent and led to a great deal of additional grief and suffering. The impact of that practice has affected the lives of many ordinary people here.
I established the inquiry to draw a line under past practices and to develop a firm framework for shaping future practice. The inquiry was not an easy task, and I am grateful to the team, which took up the challenge with energy, integrity and sympathy. Its members actively engaged with families who had been affected by former practices and were industrious in establishing the facts and devising solutions for developing better future practice. I commend the report as a balanced, measured and thoughtful account of past practice. Its focus was not restricted to finding out where past practice had been deficient; it also considered how to improve practice and build in new rights and safeguards to ensure that the service has the full confidence of everyone.
The report raises important questions about the service’s capacity to provide proper counselling and support for next of kin at the time of a loved one’s death. It also raises questions about our Health Service’s ability to provide urgent, sympathetic and appropriate responses when faced with unexpected crises.
Having given careful consideration to the inquiry’s report, I will implement its recommendations in full. I want to draw particular attention to several key areas covered by them. The Human Tissue Act (Northern Ireland) 1962 should be repealed in its entirety. I fully accept the inquiry’s recommendations on replacing the current legislation, and I am taking immediate steps to initiate the process of introducing proposals for new legislation along the lines recommended. I aim to include this in the Assembly’s 2003-04 legislative programme.
The Department should issue guidelines on the future use of blocks and slides within six months, and no research involving new human material should be permitted without explicit consent being obtained. I will issue guidelines on the use of blocks and slides before the end of the year in consultation with the research ethics committees. I will also be issuing new governance arrangements for research ethics committees later this year requiring prior ethical approval for any proposed clinical research involving Health Service users conducted by university or Health Service staff.
(Mr Deputy Speaker [Mr J Wilson] in the Chair)
Trusts should introduce uniform consent forms and information leaflets, the final drafts of which must be cleared with the Relatives Reference Group. I have asked my officials to prepare new consent forms, supporting guidance and advice documents for issue before the end of 2002. Alongside that, I recognise the invaluable role played by the Relatives Reference Group, which I set up at the same time as the inquiry primarily to offer support to bereaved parents. I will now develop its role in line with the recommendations of the inquiry, formalising its funding and extending it to cover the period up until the new legislation comes into force. The group’s remit will also be recast to reflect its future role.
Trusts must inform the Department annually that post mortem practice has been in accordance with the principles of the report. I will require trusts to make an annual declaration to that effect. I will also consider making that a statutory requirement under the new human tissue legislation. The Department should engage in a two-year multimedia campaign informing relatives that they may reclaim blocks and slides. I will commission the development of such a campaign, in liaison with the Relatives Reference Group, to be initiated in the autumn.
There are separate recommendations on education and information campaigns. They involve the Department educating the public about post mortems; obstetric, neonatal, and paediatric staff receiving mandatory training in patient grief and bereavement; and induction arrangements for new doctors, including mandatory training on obtaining fully informed consent. My officials will work directly with the Royal College of Pathology; Queen’s University, Belfast; the Northern Ireland Postgraduate Council for Education and Training; other training organisations; and the Relatives Reference Group to address those issues. I have asked them to come up with firm proposals in all of those areas by the autumn. I am committed to meeting the inquiry’s recommendations on training and to developing a public education and awareness programme for commencement later in the year.
In considering the report and its recommendations, I was struck by the statement in paragraph 8.8 that, despite the very negative impact that the controversy has had on the delivery of a proper pathology service
"Post mortems remain an important and integral part of the proper provision of a National Health Service. They are important to the public generally but to some families they are essential . The system of obtaining consent from relatives to a post mortem and informing, advising and counselling those relatives has never been better in Northern Ireland than it is today."
Post mortem examinations and the retention, with appropriate consent, of blocks and tissue samples are crucial to building and developing better clinical practice and improving health outcomes for patients. The inquiry report cites examples where such practices have advanced clinical knowledge and saved children’s lives.
I recognise the concerns expressed by the inquiry, and by some families affected by organ retention, that arrangements for managing the flood of enquiries when the issue first arose were deficient. It is important that the Health Service learn from experience. With that in mind, I am writing to all trust chairpersons, asking them to review their arrangements for dealing with unexpected crises to ensure that they have plans in place to respond quickly, effectively and appropriately to any sudden requirement of that nature. I will be asking them to include an assurance to that effect in their annual declarations regarding post mortem practice.
I intend to draw up an action plan to provide a schedule for the actions that have been outlined, and I will share that with the Assembly’s Committee for Health, Social Services and Public Safety in the coming weeks. I believe that, taken together, the actions that I have outlined today represent a comprehensive response to the inquiry report. I commend the report and invite Members to note my proposed actions to implement its recommendations in full.
Mr Deputy Speaker:
Before I call the Chairperson of the Committee for Health, Social Services and Public Safety, I remind Members that this is an opportunity to ask questions, not to make additional comments or statements.
The Chairperson of the Committee for Health, Social Services and Public Safety (Dr Hendron):
I welcome the human organs inquiry, which was chaired by Mr John O’Hara. I also welcome the Minister’s statement that she will take on board all the report’s recommendations. However, I am disappointed that, as far as I am aware, neither my Committee colleagues nor I had a chance to examine the report or the Minister’s statement earlier this morning. However, it is important that the report has been published. I also take on board your point, Mr Deputy Speaker.
I hope that the report and the implementation of the recommendations will bring to an end almost two years of heartache for families. The psychological trauma has been massive and many hospital staff have tried hard to help and console those most directly affected. There must be proper and informed consent.
The Minister referred to the repeal of the Human Tissue Act (Northern Ireland) 1962. The Department issued guidelines on the retention of blocks and slides and uniform consent forms throughout Northern Ireland. The Minister and the Committee have commented on that. Has a specific timetable been drawn up? The Minister has said that she will consult with the Committee. How will she ensure that the Committee is fully consulted and that it will have a part to play in advising the Minister on actions to be taken by her Department?
Ms de Brún:
This morning, I asked officials to inform the Committee Clerk that I will send the action plan to the Committee. I will work with the Committee, and I will ensure that it is involved fully.
With regard to a specific timetable, it is clear that if we want to include legislation in the 2003-04 Assembly timetable, we must examine the recommendations immediately. We must work with all those that the inquiry has recommended in order to ensure that the usual processes are progressed so that legislation can be included in the timetable.
Rev Robert Coulter:
I recognise the efforts that are being made to alleviate the pain and grief of the next of kin. However, will the Minister assure the House that the time taken to return organs after a post mortem will be reduced to an acceptable level, including a specific date for the return of the organs so that families can plan the second part of the funeral service?
Ms de Brún:
I will ensure that the best of current good practice is used throughout health and personal social services. Coroners’ post mortems are not within the remit of the Executive — we have no powers over coroners. However, I will send the report to the coroners and to the Northern Ireland Court Service, and I expect it to be an important input into the review of coroners’ powers and duties.
Mr Paisley Jnr:
According to the report, the scandal has resulted in fewer people consenting to post mortems, fewer people agreeing to donate their organs after death, and a decline in the number of pathologists because of the "siege" that they appear to be under. What is the Department doing to
"encourage doctors to think afresh about careers in pathology"?
Will the Minister give us the relevant statistics on the decline in the number of pathologists, the number of post mortems that have been refused and the number of organ donations?
Paragraphs 6.30 and 6.31 of the report are entitled ‘What do the Relatives want?’ That section states that relatives want recognition and apologies for what happened. Can the Minister, to use the word that seems to be avoided at all costs — "sorry"— express her sorrow to the relatives, as that would be very helpful to them?
Ms de Brún:
I draw the Member’s attention to the public apology I made on TV earlier this year when I announced that the inquiry was to be set up. I have no difficulty in ensuring that the relatives hear it again today, as I ensured they heard it then. I am extremely sorry for what happened, and I will make every effort to ensure that our service is carried out in a way that enables the next of kin to give fully informed consent. I shall ensure that all the matters drawn to the attention of the inquiry are fully addressed.
I do not have the relevant statistics to hand; however, the current problems in paediatric pathology are not specific to the North. I recognise the difficulties being faced by the paediatric pathology service and the additional pressures on it since the issue of organ removal and retention was highlighted. It is crucial that confidence in the service be restored if we are to attract new medical students to pathology. The report makes several recommendations, and an action plan is being prepared to put those recommendations into effect. In the meantime, my Department is working with boards and trusts to try to resolve the current difficulties and to restore full services as soon as possible.
Go raibh maith agat, a LeasCheann Comhairle. I thank the Minister for her statement and for her commitment to implement the report’s recommendations in full. It is almost 15 months since the scandal first came to light and since the Minister took action. Will those who are responsible for past failings be held accountable, because there is an issue about future breaches of practice? Queen’s University failed to declare that it had retained organs or tissue until the eleventh hour. Has the Minister had any contact with the Minister responsible for Queen’s University? Go raibh maith agat.
Ms de Brún:
The report has not called for any specific action to be taken against individuals. However, if any evidence of inappropriate conduct by specific individuals is brought to my attention, I shall consider it carefully. The main focus of my follow-up action will be to ensure that identified system failures are put right and that deficiencies in the legislation are corrected.
The report made recommendations about the Human Tissue Act 1962 and proposed introducing new legislation. A new law will be drafted to introduce legal sanctions that will be used in the event of individuals and organisations acting in breach of the Act’s provisions.
The report mentions several organisations. However, I have not spoken to Carmel Hanna about Queen’s University. I said in reply to a previous question that I will send a copy of the report to the coroner and the Court Service. I shall also send a copy to Queen’s University.
The Alliance Party welcomes the report. It is unfortunate that so many families have suffered such unnecessary pain, especially in recent days in the wake of further revelations. That has put enormous strain on the families concerned. Let us hope that the report’s implementation will — [Interruption].
Mr Deputy Speaker:
Order. Mr McCarthy, are you coming to your question?
Yes, Mr Deputy Speaker. I welcome the Minister’s apology to the families on behalf of the Department. I hope that it will go some way towards alleviating their worries.
Does the Minister agree that the outcome of this sorry saga has been a severe reduction in human organ donation throughout Northern Ireland, thus depriving many patients of that life-saving facility? If so, what action will she take to increase the number of organ donations to a reasonable level?
Ms de Brún:
I would not like to give the impression that the levels of organ donation have become unsatisfactory — they are far from it. I am pleased that people continue to donate organs. In the past year, I have done several things to promote organ donation, and I shall continue to do so.
I welcome the Minister’s statement. It may go some way to address the grief that parents have been through because of bereavement.
I note that the Minister said that the Relatives Reference Group may be included in the now mandatory training for obstetric, neonatal and paediatric staff, as well as in the induction arrangements for new doctors. After all, nobody is better placed than the parents to be involved in that training. It may not be enough for the Department to speak to the Royal College of Pathology and to the Postgraduate Council for Education and Training. On all future occasions, where possible, we must continue to involve the relatives.
Will the Minister answer Mr Coulter’s question on the time lag with post-mortems that exists as a result of the stress that the paediatric pathologist at the Royal Victoria Hospital has been put under? I have received letters from parents who are still grieving because they have not received the results of post-mortems — the wait goes on and on as a direct result of what has happened.
It is not sufficient for the Minister simply to send a copy of the report to the coroner. That is not joined-up government. Although the matter is reserved, we must take devolution seriously. I ask the Minister to include the coroner in any interdepartmental arrangements for implementing the recommendations, because the recent scandal over Queen’s University’s discovery that it had not submitted all its evidence had to do with the fact that some of that evidence comes directly from the coroner’s office —
Mr Deputy Speaker:
I believe that the Member posed a question at the beginning of that personal statement.
Mr Deputy Speaker, everything that I said led to a question. If you look at Hansard, you will find that there was no statement. Everything I said led to a question.
Mr Deputy Speaker:
Ms de Brún:
I have no difficulty whatsoever with people from the coroner’s office taking part in any group that I set up to examine future practice. However, I reiterate that the Executive have no powers over coroners. As I explained when the details of the inquiry were announced, coroners’ post-mortems are covered by separate legislation — they are not within my remit as Minister of Health, Social Services and Public Safety. However, I shall do all that I can to ensure that we have the best possible practice.
With regard to the time lag, I have already said that I shall do all that I can to ensure best practice and to ensure that relatives can have the results of post-mortems as quickly as possible. I shall also ensure that, through future work and through addressing the recommendations on respect to the Relatives Reference Group, relatives can become fully involved in future work if they wish.
I welcome the Minister’s statement. I hope that it gives closure to those parents who were so sadly bereaved. Having attended the first public inquiry, I saw real grief on the faces of the young people who had to give evidence. It was quite traumatic. I also witnessed chief executives say that they were guilty and that they were sorry. I hope that such an inquiry need never happen again.
I am glad that the Minister took the opportunity this morning to apologise once again to those relatives. How will she ensure that grieving parents will have all the information that they require before being asked to sign for a post-mortem? Last week’s disclosures of the amount of tissue and the number of foetuses laid aside were disturbing. Will the Minister ensure that there will be no more disclosures of that nature?
Ms de Brún:
I reiterate that matters of practice at Queen’s University are the responsibility of the Department for Employment and Learning, and are for the Minister to comment on. A thorough and open investigation will lay the foundation for the future and will help to ensure that public confidence is restored.
The key improvements will include developments in post-mortem practice and procedure, and the introduction of new legislation that ensures that the principle of fully informed consent is at the core of the service. There will be new accountability arrangements, development of training for all staff involved in patient care and post- mortems and public education and information programmes aimed at raising awareness and understanding of the practice of post-mortems.
I am confident that the inquiry’s recommendations will, when implemented, work towards increasing public confidence in the service and ensuring the highest possible standards.
I welcome the Minister’s statement. The subject is highly sensitive and emotive, and I urge the Minister to consider, and perhaps outline to the House, methods by which we can investigate ways in which coroners’ reports and research carried out at Queen’s University can be made subject to the new regulations. The matter remains one of great concern to many people. The House and the public will be reassured if real joined-up government can be brought into effect on that matter.
Will the Minister confirm that post-mortems that include the removal of the heart will be subject to the new regulations? Will she confirm that relatives will be informed of all procedures affecting their loved ones before and after they are carried out? Are the dates given by the Minister for the repeal of the Human Tissue Act (Northern Ireland) 1962 and for the introduction of new legislation the earliest on which that can be done? Must blocks and slides be reclaimed or will they be automatically returned to the relatives?
Ms de Brún:
The inquiry has recommended that there should be a two-year multimedia awareness campaign to ensure that relatives are aware that they can reclaim blocks and slides. It emerged during the inquiry that some people do not wish to be approached, and that the appropriate way forward is to make the information available so that those who wish to reclaim can do so.
The dates that I have given for the introduction of new legislation are the earliest possible dates.
As regards coroners’ reports and the research at Queen’s University, I shall do my best to ensure joined-up government. However, I am here to answer questions on matters that fall within my remit. It is not that I do not wish to answer other questions. I am neither able nor empowered to answer questions on matters that fall within the remit of another Department. I shall do my best to ensure that everything that I have responsibility for will be done.
Work has already begun on measures to standardise procedures for post-mortems.
I made it clear that all hospital post-mortem examinations must be covered by fully informed consent. That has been endorsed by the inquiry. I have asked departmental officials to review the Human Tissue Act 1962 in line with the inquiry’s recommendations. Other measures will be required to develop how consent to a post-mortem is obtained and by whom, ways in which health professionals can respond and how post-mortems are recorded and reported. The Department of Health, Social Services and Public Safety will work with health professionals, trusts and other key interested parties to ensure that those important measures are expedited. By working with the Relatives Reference Group, the Department will ensure that the measures are developed appropriately.
On a point of order, Mr Deputy Speaker.
Mr Deputy Speaker:
Points of order will be taken at the end.
I refer the Minister to my point about the removal of heart organs.
Mr Deputy Speaker:
Does the Minister wish to respond?
Ms de Brún:
Work will be undertaken with all key stakeholders to determine how we proceed with new guidance.
The idea of organ donations has been seriously damaged by the discovery made 15 months ago. How does the Minister propose to restore confidence in that successful and essential way to extend useful life?
Ms de Brún:
In 1999, there were 20 organ donors. In 2000, there were 21 and, in 2001, there were 33. The figures speak for themselves. The number of organ donations continues to rise. I refer the Member to answers that I gave this morning on public awareness of the issue and on the greater weight that is being given to asking people to donate their organs.
Mr J Kelly:
Go raibh maith agat, a LeasCheann Comhairle. I preface my question by thanking the inquiry membership and staff for this comprehensive report, and I thank the Minister for her comprehensive statement. It is hoped that both those statements will begin to put to rest the emotional trauma that the scandal of the organ retention issue has caused the families of those affected. I also welcome the Minister for Employment and Learning’s attendance this morning. Her presence will perhaps mark the beginning of addressing what happened at Queen’s University and the trauma that was caused by its late disclosures on organ retention.
I thank the Minister for her support for the families and the Relatives Reference Group. Does the Minister intend to put in train compensation for those who have been affected by the scandal?
Ms de Brún:
Individual families may decide whether they wish to pursue compensation.
Alongside the crucial point of trying to alleviate the suffering of concerned relatives, the Assembly should also recognise the value to medical teaching and medical research — hence the long-term health of the entire population — of having an archive of blocks and slides. Considering that, does the Minister agree that where the identity of materials cannot be established and where families do not ask for the return of organs after the two-year publicity and media campaign proposed in the report, the archive collections — as at Queen’s University Belfast, for instance — should be maintained for the general good?
Ms de Brún:
I recognise the benefits that arise, and I have referred to them in my statement. The inquiry dealt specifically with that issue. In future, any research that involves human materials for which explicit consent has not been given should not be permitted. The inquiry’s terms on that are very clear. As part of its recommendations, it requests a two-year multimedia campaign to ensure that those who wish to reclaim tissue and organs that are being held know that they can reclaim them. The inquiry was explicit in recognising that it would not be of benefit that that possibility should be lost to medical science.
The report clearly defines that there has been a loss of confidence in the system as a result of the revelations about past practices. There is a target date of 2003-04 for the implementation of new legislation. Can we have an assurance that the new legislation will be the Department’s number one priority? How realistic is that date? Public confidence should be restored; that is paramount. Every effort must be made to ensure that the target date of 2003-04, which is going on to the legislative programme, will be met. It is only by the introduction of new legislation that some degree of confidence will be restored to the public and, in particular, to those who are most affected.
Ms de Brún:
It is my aim that the legislation should be included in the Assembly’s 2003-04 legislative programme. However, that is not the only issue that the Department will address. In reply to an earlier question, I reported that key improvements will include not only the introduction of new legislation but new accountability arrangements, development in post-mortem practice and procedures and a public education information programme to make next of kin aware of what a post-mortem consists of and the safeguards that are in place. There will also be training for all staff involved in patient care and post-mortems.
In the next few weeks, I shall announce new proposals that arise from the consultation document ‘Best Practice, Best Care’. They will be aimed at ensuring that appropriate governance arrangements are in place in health and personal social services to provide assurances about the quality of health and social services delivered here. That will include arrangements for improved governance covering research conducted by, or within, health and personal social services organisations.
Mr Deputy Speaker:
I have received notice from the First Minister and the Deputy First Minister that they wish to make a statement on the Executive position report.
The First Minister (Mr Trimble):
With your permission, Mr Deputy Speaker, the Deputy First Minister and I wish to make a statement on the issues that will affect the Executive’s work to develop a Programme for Government and Budget for the financial year 2003-04 and beyond.
In his statement to the Assembly on 4 March 2002, the Minister of Finance and Personnel identified the main stages for this year’s Programme for Government and Budget cycle. A key first phase is the development of the Executive’s position report on the Programme for Government and Budget, which has been made available to all Members this morning.
The position report reflects our commitment, under the agreement, to agree each year a programme that incorporates an agreed Budget. It gives the Executive an opportunity to outline for the Assembly’s consideration the key issues affecting public services, which should influence the preparation of the next Programme for Government and the Budget that will support it. The report formally launches the consultation, with the Assembly and others, on the next Programme for Government and the Budget.
The position report is distinct from the annual report; the number of reports on this subject can result in confusion. The annual report, which will be produced before the end of this month, outlines the Executive’s performance in the past year on their first Programme for Government: where progress has, or has not, been made; reasons, where appropriate, for any lack of progress; and the action that has been taken. The position report projects how the Executive can refine their priorities in the Programme for Government to target more effectively the resources in the Budget in order to deliver progress.
The development of the Programme for Government has been continuous. Less than six months ago, the Assembly endorsed the current programme, which focuses on the financial year 2002-03, and its implementation began just over two months ago. The current cycle represents an important opportunity. For the first time, we intend to set plans for a three-year period, which will be informed by a more thorough analysis of the needs and effectiveness of our major public service programmes. Our approach will depend on the conclusion of the negotiations on the Treasury spending review, which will be known next month.
In December, the Executive indicated, through their spending plans for 2003-04, their determination to change the pattern of public services in order to reflect more fully the priorities of the Programme for Government. In addition, the reinvestment and reform initiative, which we launched on 2 May, adds several new dimensions to the debate that is needed on how our public services develop under the Executive and the Assembly, in co-operation with the North/South Ministerial Council and the other structures created under the agreement.
The development and annual revision of the Programme for Government, incorporating the Budget, is the core task of the Administration. Through that, they set out their policy direction, plans and priorities for the years ahead. Those plans and priorities will, in turn, inform budgetary decisions. We seek to develop, among the four parties in the Administration, a collective direction of agreed priorities, through which we shall continue to build the basis of the new democracy. Through discussion, debate and consultation, in the Chamber and further afield, we seek to draw together the views of the Assembly and society on the priorities for Northern Ireland.