(a) First Minister's Statement on "Opt Out" for Organ Donation

(b) Written Cabinet Statement by the Welsh Assembly Government

(c) Presumed Consent to Organ Donation

(d) 'Better focus' for renal patients'

(a) First Minister's Statement on "Opt Out" for Organ Donation

Inquiry into Presumed Consent for Organ Donation

The Health, Wellbeing and Local Government Committee, has started an inquiry into the potential for making changes to the way body organs are donated in Wales. Since organ donation can be a sensitive subject, the Committee is particularly interested in finding out the views of people in Wales.

FULL REPORT- Click here.

WKPA written response. Click Here

(b) WRITTEN CABINET STATEMENT BY THE WELSH ASSEMBLY GOVERNMENT

Members will be aware that I have been determined to increase the number of organ donors in Wales in an effort to improve the health and quality of life for people who need a transplant.

Currently, the legal framework governing organ donation is the Human Tissue Act which came into effect in 2006.

This current system requires a patient to consent by opting into the organ donation system before death. Health professionals should still consult with relatives, where possible, to find out if the deceased had spoken about their wishes and to encourage them to be respected. In this current system, a person may have registered their wish to donate organs on the UK Organ Donation Register but not have their wish respected. Currently in the UK, the refusal rates stand at 40%.

Organs are allocated on a clinical need basis across the UK by NHS Blood and Transplant and there is no intention to change this system.

The UK Organ Donation Taskforce report (2008) proposed reforms to the current system to identify and remove obstacles to organ donation within it. Whilst the recommendations will improve the current situation, a significant gap will still remain between the number of donor organs needed and the number of organs available for transplant.

The Organ Donation Taskforce report on Presumed Consent for Organ Donation recommended that an opt-out system should not be introduced in the UK at the present time.
 
The Health, Wellbeing and Local Government Committee held an inquiry into Presumed Consent for Organ Donation in 2008. Its report recommended that the Assembly should not, at this stage, seek a Legislative Competence Order, to allow the introduction of a system of presumed consent in Wales. The Committee also recommended that in any future detailed consideration of legislation to introduce presumed consent in Wales or in the UK a “soft” system should be used, where loved ones are consulted and their views are taken into account.

My response to the report stated that it would be premature to rule out seeking a Legislative Competence Order at this stage, although it did point out that the Committee did not oppose presumed consent in principle. The response accepted, in principle, that in any future detailed consideration of legislation that a ‘soft’ system be used, although the response did state that a decision would be made once there is a clear understanding of public opinion in Wales.

I have made clear that I am personally in favour of presumed consent as a way of increasing organ donation. However, I recognise that this is a sensitive and emotive subject. That is why I have wanted to spend time ensuring we gauged people’s views before coming to a conclusion.

The Welsh Assembly Government held Public Debates on this issue between October 2008 and January 2009. Following these debates, there was a clear public preference for either an opt-out system or a mandated choice system above sticking with the current one. There was also a preference for a soft rather than a hard opt out system. The report on the outcome of the debate formed the basis of a consultation paper.

On 8 May, I published the paper ‘Options for changes to the organ donation system in Wales’, launching a 12-week consultation period. It specifically asked the public if the Assembly Government should now move forward and propose a legislative change to introduce a soft opt-out system in Wales. The majority of responses supported a change to the organ donation system in Wales to a soft opt-out system. A report on the consultation has been published on the Assembly Government website at:
http://wales.gov.uk/topics/health/publications/health/reports/organdonation/?lang=en

Cabinet colleagues have agreed with my proposal to explore the possibility of introducing a soft opt out system for organ donation in Wales and that a bid for a Legislative Competence Order be submitted as part of the annual trawl for legislative items. This will take time to achieve so we must continue to do all we can to raise awareness of this issue and encourage people to sign up to the organ donation register.

Members will be aware that the Assembly Government has funded the Kidney Wales Foundation-led Donate Wales: Tell a Loved One campaign. The campaign has had considerable success in terms of helping to increase the numbers of people in Wales joining the Organ Donation Register.  Between 2007/08 and 2008/09, 60,000 more people in Wales joined the Register, bringing the total number to 810,000.

I have agreed additional funding of £13,000 in 2009/10 to help fund the Donate Wales ‘New Year Resolutions’ campaign, which aims to build on this success.

In addition, work continues on implementing the Organ Donation Taskforce recommendations.

All but one of the NHS organisations have appointed a clinical lead for organ donation and there is also now a network of transplant coordinators in all critical care units in Wales. I would expect the clinical leads and coordinators to have the skills to work with families at the most difficult time to help them through the decision.

Work is already underway on a new Welsh Assembly Government-funded £4.2million purpose-built Renal Transplant Centre at the University Hospital of Wales, Cardiff, which will increase current capacity and greatly improve the quality of life for renal patients.

My move to seek the power to introduce a legislative change will mean that Wales is leading the way in increasing organ donation rates.

I would encourage Members who may not have already signed up to the organ donation register to consider this. Members can find more information on this on the Donate Wales campaign website at www.donatewales.com

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Dai Lloyd AM - Questions to the Minister

C9 David Lloyd: A wnaiff y Prif Weinidog ddatganiad am ganiatâd tybiedig ar gyfer rhoi
organau? OAQ(3)1303(FM)

Y Prif Weinidog: Yr ydym yn gobeithio cyflawni mwy na chyfraith newydd yn unig.
Byddai creu cyfraith newydd i sefydlu'r egwyddor o ragdybio caniatâd yn gwneud
hanner y job yn unig. Yr ydym hefyd yn ceisio newid y diwylliant ymhlith y bobl, sef
'Sea change in public attitude' ys dywed y Sais. Dyna sy'n angenrheidiol os yw'r
gyfraith hon i weithio.

Q9 David Lloyd: Will the First Minister make a statement on presumed consent to organ donation? OAQ(3)1303(FM)

The First Minister: We are looking at achieving more than just passing a new law.
Creating a new law setting out the principle of presumed consent would do only half the
job. We are also trying to change the culture and public attitudes. A 'sea change in public
attitude', as we say, is essential if this new law is to work.

David Lloyd: Mae arolygon yn dangos bod rhyw 90 y cant o bobl yn cytuno â'r syniad o
roi eu horganau wedi iddynt farw, ond dim ond rhyw 22 y cant o bobl sydd wedi
cofrestru o dan y system bresennol o ddewis i gofrestru. Mae pobl sydd ar restr aros am
aren yn marw. Felly, onid ydych yn cytuno'n sylfaenol y byddai system o ganiatâd
tybiedig-hynny yw, system o eithrio'ch hun os nad ydych yn cytuno-yn adlewyrchiad
tecach o ewyllys y bobl na'r system bresennol?

David Lloyd: Surveys show that some 90 percent of people agree with the idea of donating
their organs after their death but, under the current system of opting in, only some 22 per
cent of people have registered. People on the waiting list for a kidney are dying. Therefore,
do you not fundamentally agree that a system of presumed consent-that is, a system of
opting out if you do not consent-would be a fairer reflection of the will of the people than
the current system is?

Y Prif Weinidog: Credaf y byddai'n adlewyrchiad tecach, a dweud y gwir. Tra
ydym yn aros am newid yn y gyfraith ac mewn diwylliant, yr ydym yn bwrw ymlaen
yn llwyddiannus dros ben gyda'r gofrestr sy'n dangos eich bod eisoes wedi rhoi eich
caniatâd. Yr wyf wedi cofrestru, ac yr wyf yn cario'r cerdyn yn fy mhoced bob amser.
Dylem annog pawb i wneud hynny. Yr ydym newydd gyrraedd y garreg filltir o gael
800,000 o bobl yng Nghymru ar y gofrestr, a chredaf mai James Herbert, myfyriwr
offthalmoleg ym Mhrifysgol Caerdydd, oedd yr wythcanmilfed person i gofrestru. Yr
ydym yn bwrw ymlaen at 1 filiwn yn awr, tra ydym hefyd yn anelu at ddeddfwriaeth
newydd.

The First Minister: I think that it would be a fairer reflection, to be honest. While we wait
for a change in the law and in people's attitudes, we are making extremely good
progress with the register that proves that you have given your prior consent to organ
donation. I have registered, and I always carry the donor card in my pocket.
We should be encouraging everyone to do that. We have just reached the milestone of getting
800,000 people in Wales on the register. I think that James Herbert, an ophthalmology student at
Cardiff University, was the eight-hundred thousandth person to register. We are forging
ahead towards the 1 million mark now, while also aiming for the new legislation.

Jonathan Morgan: First Minister, you will know that the Health, Wellbeing and Local
Government Committee did a very in-depth review of presumed consent and the whole
framework for organ donation. As a preface to my remarks, I place on record my thanks
to every member of the committee for the considerable amount of work that was put in
on a tricky and complicated subject. Bearing in mind that the committee did not rule out-
and it certainly did not rule in-the need to move towards a legislative competence
Order, is it now Government policy that we have a legislative competence Order and that
we move towards that over the next 12 months?

Jonathan Morgan: Brif Weinidog, gwyddoch i'r Pwyllgor Iechyd, lles a
Llywodraeth Leol gynnal adolygiad manwl ar ganiatâd tybiedig a'r holl fframwaith ar gyfer
rhoi organau. Fel rhagymadrodd i'm sylwadau, dymunaf gofnodi fy niolch i bob
aelod o'r pwyllgor am y gwaith sylweddol a wnaethpwyd ar bwnc dyrys a chymhleth. A
chofio bod y pwyllgor heb benderfynu'r nail ffordd na'r llall-sef nad oedd angen nac
ychwaith bod angen-symud tuag at Orchymyn cymhwysedd deddfwriaethol, ai
polisi'r Llywodraeth bellach yw ein bod yn cael Gorchymyn cymhwysedd
deddfwriaethol a'n bod yn symud tuag at hynny yn ystod y 12 mis nesaf?

The First Minister: Yes. We will pursue legislative competence for presumed consent
to reinforce the progress that has already been made, including reaching the milestone
of having 800,000 people on the register, when only 3 million people live in Wales.
There are probably 2.25 million adults in Wales-and I presume that it is only adults
who can consent to this-which means that about 40 per cent of adults have given their
consent. We are taking the twin-track approach of trying to achieve a sea change in
public attitude side by side with securing a change in the law. The law will not work
without that sea change in public attitude.

Y Prif Weinidog: Ie. Byddwn yn mynd ar drywydd cymhwysedd deddfwriaethol ar
gyfer caniatâd tybiedig er mwyn atgyfnerthu'r cynnydd sydd wedi'i wneud
eisoes, gan gynnwys cyrraedd y garreg filltir o gael 800,000 o bobl ar y gofrestr, pan nad
oes ond 3 miliwn o bobl yn byw yng Nghymru. Mae'n si?r bod 2.25 miliwn o
oedolion yng Nghymru-a thybiaf mai dim ond oedolion a gaiff roi eu caniatâd ar gyfer
hyn-sy'n golygu bod oddeutu 40 y cant o oedolion wedi rhoi eu caniatâd. Yr ydym yn
dilyn y trywydd dau lwybr, sef ceisio sicrhau newid mawr yn agwedd y cyhoedd ochr yn
ochr â sicrhau newid yn y gyfraith. Ni wnaiff y gyfraith honno weithio heb newid mawr
hwnnw yn agwedd y cyhoedd.

Jenny Randerson: First Minister, I am delighted that your Government and the
Minister for Health and Social Services decided to look so closely at the evidence that
the committee heard at some considerable length, and decided to take such a bold
interpretation of it and then to pursue a public consultation. Whatever our views on organ
donation, I think that we would all agree that the public consultation is fundamental.
However, given that well over 400 people are on the waiting list for organ transplantation in
Wales, I am concerned-and I could probably be forgiven for it-that time is of
the essence. I would be grateful if you could give us some outline of the anticipated
timetable for the public consultation before you intend to press ahead with an LCO, if
that is what you eventually decide to do.

Jenny Randerson: Brif Weinidog, yr wyf wrth fy modd bod eich Llywodraeth a'r
Gweinidog dros Iechyd a Gwasanaethau Cymdeithasol wedi penderfynu edrych mor
ofalus ar y dystiolaeth a glywodd y pwyllgor dros gyfnod maeth, a'u bod wedi penderfynu
ei dehongli mewn ffordd mor feiddgar ac yna fynd ar drywydd ymgynghori â'r cyhoedd.
Beth bynnag yw ein barn am roi organau, credaf y byddem i gyd yn cytuno bod
ymgynghori â'r cyhoedd yn hollbwysig. Fodd bynnag, a chofio bod ymhell dros 400 o bobl
ar y rhestr aros ar gyfer trawsblannu organ yng Nghymru, yr wyf yn poeni-ac mae'n
debyg y gellid maddau imi am hynny-bod amser yn brin. Byddwn yn ddiolchgar pe
gallech roi rhyw syniad inni am yr amserlen a ragwelir ar gyfer ymgynghori â'r cyhoedd
cyn ichi fwriadu bwrw ymlaen â'r Gorchymyn, os mai hynny fydd eich
penderfyniad yn y pen draw.

The First Minister: I do not have a timetable here. We pay tribute to the committee's
work. However, we did not come to the same conclusion. That demonstrates the differences
of view that you can have between the legislative and executive branches of the
Assembly. We believe that the use of community health councils is critical to try to
secure public views and public involvement. There are several options open to us,
including the soft and hard systems of presumed consent, where you do or do not
take account of relatives' views as well as the
wishes of the deceased person. The consultation will be about that kind of issue,
to see whether we can get the maximum number of people on board, while also trying
to reach 1 million people, as that would mean that almost half of all adults in Wales were
registered, and we would commend that. The best thing of all would be if everyone was on
the register, because then we would not need a new law. However, let us face it: that is not
going to happen.

Y Prif Weinidog: Nid oes gennyf amserlen yma. Rhoddwn deyrnged i waith y pwyllgor.
Fodd bynnag, nid yr un oedd ein casgliad ni. Mae hynny'n dangos y gwahaniaeth barn y
gallwch ei gael rhwng cangen deddfu a changen gweithredu'r Cynulliad. Credwn ei
bod yn hanfodol defnyddio cynghorau iechyd cymuned er mwyn ceisio sicrhau barn y
cyhoedd a'u cynnwys. Mae sawl dewis ar gael inni, gan gynnwys y system caniatâd
tybiedig lac a'r system gaeth. Mae'r naill yn ystyried barn y perthnasau yn ogystal â
dymuniadau'r ymadawedig ac nid yw'r llall yn gwneud hynny. Dyna'r math o beth y
bydd yr ymgynghori'n ymwneud ag ef, er mwyn gweld a allwn gael cefnogaeth y nifer
mwyaf posibl, gan geisio ar yr un pryd, gyrraedd 1 miliwn o bobl, gan y golygai
hynny fod bron hanner holl oedolion Cymru wedi'u cofrestru, a byddem yn cymeradwyo
hynny. Y peth gorau un a fyddai petai pawb ar y gofrestr, oherwydd wedyn, ni fyddai
angen cyfraith newydd arnom. Fodd bynnag, gadewch inni wynebu'r peth: nid yw hynny'n
mynd i ddigwydd.

Y Llywydd: Diolch yn fawr i'r Prif Weinidog am ateb ei holl gwestiynau.

The Presiding Officer: I thank the First Minister for answering all his questions.

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(d) 'Better focus' for renal patients'

Kidney services in Wales will be run by a single body in future in a move campaigners say will cut bureaucracy and improve access to dialysis.
Welsh health minister Edwina Hart is setting up an
All-Wales Renal Network to oversee treatment.
She said it would ensure improvements were consistent across Wales following her announcement in June of extra money to expand dialysis programmes.
Campaigners said services had been too fragmented in the past.
The All-Wales Renal Network will bring together bodies in the north and south.
"Work is already under way with local communities to deliver a programme of dialysis expansion across Wales and I have already agreed an additional investment of £2.5m for 2008/9 and £6.8m for 2009/10," she said.
She said the assembly government would also continue its work with the Kidney Wales Foundation to encourage more people to sign up to the organ donor register.
"We have also held a public consultation on changing the legislation on organ donation and we are currently considering the responses and options available," she said.

The WKPA is delighted that Edwina Hart has announced that there will be an All Wales Renal Network to oversee renal facilities in Wales. Patients’ representatives on the WKPA committee sat on the Renal National Service Framework published in May 2007 which set the standards for all renal replacement therapies. Your representatives continue to attend networks meetings, raising issues on your behalf. At the last South Wales network meeting on Friday 21st August 2009,John Reever raised the important issue that there has not been a Renal Social Worker appointed at UHW to replace Elin Owen.
We continue to raise matters that concern our members at every opportunity. The setting up of the all Wales Renal Network will make it easier for the WKPA to campaign on your behalf.

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