Motion to agree the general principles of the Human Transplantation (Wales) Bill, 16 April 2013

Posted on April 17th, 2013 in Uncategorized

Motion to agree the general principles of the Human Transplantation (Wales) Bill, 16 April 2013

NDM5199 Mark Drakeford (Cardiff West)

To propose that the National Assembly for Wales in accordance with Standing Order 26.11:

Agrees to the general principles of the Human Transplantation (Wales) Bill

The Human Transplantation (Wales) Bill and Explanatory Memorandum were laid before the Assembly on 3 December 2012.

The report of Health and Social Care Committee on the Human Transplantation (Wales) Bill was laid before the Assembly on 25 March 2013.

 

 

The Minister for Health and Social Services opened the debate and noted that deemed consent would move to an ‘opt in’ structure and that two members of the Committee could not agree with this on principle and that he respected their position but could not agree with this standpoint. He added that ‘three equally valued choices’ would be made available to the public –opting in, opting out or have deemed consent by ‘taking no action’.

The Minister stated that three avoidable deaths happened every month in Wales but did not believe that deemed consent would address this issue wholly but believed that as a package it would bring about ‘a cultural shift’ and ensure Welsh citizens communicated their opinions with each other.

The Minister noted that there was a large number of recommendations from the Health and Social Care Committees and noted that the Welsh Government would bring forward in Stage 2 an amendment that stated that novel forms of transplantation would not be part of deemed consent and also that if an appointed representative was unable to be contacted that the decision would be made by the family. He also added that people such as prisoners who weren’t in Wales out of choice would not be subjected to deemed consent and that this would be addressed in the code of practice.

The Minister stated that the role of the family was a contentious factor during the consultation period and noted that deemed consent donation would not go ahead in the absence of family members and this position would be reinforced on the face of the Bill and the Government would bring forward an amendment in Stage 2  to strengthen the position of the family and that the situation in practice and in law had to be ‘aligned to one another.’ He added that the donors view was ‘paramount and had to be respected’ and family members had to show that they were against donation.

The Minister noted that the position of students from outside of the country, living in Wales was protected by two family safeguards – that they had to have a family member present and also family members could rebut donation.

 

The Minister stated that he wanted to hold further rounds of discussion between faith groups and clinicians to ensure that the role of the family was clear.

The Minister stressed that an appointed representative could overrule the family and if an individual was anxious that the family would not represent their views effectively an appointed representative could be placed on the organ donation register.

The Minister noted that the Government had to inform the public effectively of the deemed consent system in order to conform to the Human Rights Act and the communication campaign was paramount with regards to this and had to reach groups that weren’t usually engaged in public awareness campaigns.

Vaughan Gething AM on behalf of the Health and Social Care Committee noted that surveys had shown support to deemed consent but that the committee had received more written evidence against deemed consent than in favour. He stressed that a communications campaign was imperative to educate the public.

Vaughan Gething AM noted that two members of the committee were against deemed consent, while other members were in favour. He added that ‘on its own the Bill’ would not drive up organ donation but that international studies had shown that as part of a ‘package’ it could lead to an increase.

Vaughan Gething AM noted that there was a consequence for critical care capacity, even with a moderate increase of donor numbers and believed that the Minister should prepare a detailed plan on the future of critical care in Wales before the end of Stage 1 and was looking forward to hearing more from the Minister.

 

Vaughan Gething AM stated that further information and clarity was needed on the role of friends and family and a ‘clear and consistent picture was not delivered to date’ and that there was at present a difference between what was in law and what was happening in practice but was interested in what the Minister had to say on the matter.

 

Vaughan Gething AM noted that appointed representatives were important, especially if individuals disagreed with family members and was glad that the Minister would ensure that names of appointed representatives would be recorded on the organ donation register.

Vaughan Gething AM stated that the Committee believed that some residents were not here voluntarily and was glad what the Minister had said that deemed consent would not apply for prisoners but asked the Minister to consider members of the armed forces also. He also added that he was glad that the Minister would consider the situation of overseas students.

Vaughan Gething AM noted that the committee believed that an update on the position of a single register across the UK was necessary as this was dependent on other administrations in the UK and also asked about the cost implications of this.

 

Vaughan Gething AM asked about the communication and educational campaign and that it was important that the public were made aware of deemed consent and that individuals had to be fully aware under the Human Rights Act and would any government be able to meet this but was glad that the Minister would address this. He also added that they ‘remained to be convinced’ if the resources were adequate and was glad that the Minister would look into this.

 

Vaughan Gething AM welcomed that a draft copy of the code of practice would be shared with committee members before the end of Stage 2.

Vaughan Gething AM believed that a robust evaluation strategy should be put in place as there would be immense interest in what happened in Wales and wanted the Minister to state what he believed success would look like.

The Chair of Constitutional and Legislative Affairs Committee noted that all good legislation should seek the highest levels of clarity and believed that the Bill as currently drafted should be ‘clearer’ as it was of immense public importance.

David Melding AM stated that clarity had to be sought with regards to the ranking of family members and how would the Bill complement and develop existing legislation when it came to this matter.

David Melding AM believed that communication was important to ensure the success of the Bill and believed that a duty should be on the face of the Bill that appropriate provision was made to ensure effective communication.

David Melding AM noted that the issue of novel transplants had to be addressed on the face of the Bill and not in a code of practice or in regulations. He also added that there had to be greater use of the super affirmative when it came to scrutinizing secondary legislation that may derive from the Bill to ensure maximum public and legislative scrutiny.

Darren Millar AM stated that this was an ‘emotive’ issue and that three people per month died in Wales while waiting for an organ and therefore better campaigning had to be made on the issue. However he stated that there would be a free vote on the Conservative benches. He added that the evidence was unclear that deemed consent would lead to a higher rate of organs donated and that the high rates in Spain was as a result of effective campaigns and not because of deemed consent.

 

Darren Millar AM was pleased that there would be better alignment of the role of the family in practice and in the Bill. He added that it was important to address the ranked list of family members and friends.

 

Darren Millar AM was glad that the Minister clarified the position of prisoners and overseas students and asked him to clarify the issue of the armed forces. He also asked that the Minister to increase the period of residency in Wales in order for deemed consent to apply from six months to twelve months, especially given that a communication campaign would be an annual occurrence.

 

Darren Millar AM spoke of his concerns at the lack of capacity in critical care. He also added that the budget set aside for a communication campaign was ‘insufficient’ and was looking forward to hearing more from the Minister on these two issues.

Mick Antoniw AM stated that the scrutiny of the legislation had been ‘very effective’ and had led to a number of ‘government concessions’ that would lead to better legislation. He believed that as part of a package of reforms this legislation could lead to an increased number of organs donated and that international research ‘backed’ this position.

Elin Jones AM noted that she was glad that there would be further clarification when it came to which organs would come under deemed consent and believed that novel transplantations should be exempted from this legislation and was looking forward to seeing the wording of the government amendment.

 

Elin Jones AM spoke of her concern at the lack of critical care capacity and called on the Government to publish a detailed plan on critical care and was glad that the Minister had agreed to this point. The Member also spoke of the position of students from outside Wales and stated that the Minister had said that students would be ‘safeguarded by a family veto’ on the face of the Bill but was concerned what would happen if families members could not agree with each other and what would happen in that position and if there should be ranked list of family members.

 

Elin Jones AM stated that Plaid Cymru would have a free vote on the matter. (The microphone was cut off by the Presiding Officer.)

Kirsty Williams AM noted that it was important to have clarity when it came to the role of the family and a great deal of confusion was caused by discrepancies made by the former Minister and added that she was glad that the new Minister had offered better clarity but that he admitted that further discussion was needed to ensure that this matter did not cause any confusion.

Kirsty Williams AM believed that potential donors were already being lost because of the capacity of critical beds and this had to be addressed otherwise the legislation would not be of any value.

Kirsty Williams AM stated that ‘nobody was convinced’ that the recourses allocated to the communication campaign was adequate. She added that the Welsh Liberal Democrats would support the legislation going forward.

Angela Burns AM noted she would ‘vote with he conscious’ and she was ‘instinctively against the idea of the state having sovereignty over her body’ but on the other hand people were dying as a result of the lack of organs available. She added that she would vote in favour of this in order that the discussion moved forward to Stage 2.

Angela Burns AM asked the Minister to ensure that the people of Wales knew what this legislation meant and spoke of the difficulty of ensuring this was done effectively. Angela Burns AM asked what organs would be donated under this legislation and also spoke of cross-border difficulties.

 

Simon Thomas AM stated that he was going to abstain but believed that what the Minister had said during the debate had given him further confidence. He added that he wasn’t against deemed consent but he wanted to ensure that this would not lead to a decrease in organs donated and wanted clarification when it came to the capacity of critical beds and would not want ‘to legislate for the sake of legislating.’

Simon Thomas AM noted that the Bill had ensured people were discussing the matter but more had to be done to ensure that services would support the legislation and that there would be an adequate communications campaign. He noted that he would abstain but hoped that he would be able to support the Bill in the future when amended.

Suzy Davies AM said that she was torn on the issue and ‘could be swayed’ by the debate. She added that it would be impossible to reach everyone in Wales but queried whether it was possible to deem consent by some who weren’t aware of the legislation.

 

Jocelyn Davies AM noted that she wanted to support the legislation but was unable too. She was pleased that novel transplantations would be exempted but did not believe that the Minister would be able to address her fundamental fears. She added that she decided to became a donor and had been on the register since 1985, but it was her decision and there was ‘nothing more precious that autonomy.’ The Member said that she would abstain and wanted to see other ways to increase the organs donated in Wales.

Byron Davies AM believed that the family had to have the final say and that this would reflect the cultural values of Wales. He added that the Bill before the Assembly did not make provision for this and therefore could be seen as a ‘hard opt out’.

Byron Davies AM was concerned that there had been a decrease in organ donation rates of 22% during the period of discussing the Bill. He believed that this legislation ‘should be put on hold’ but if it went forward it had to introduce an ‘unambiguously a soft opt out system.’

Russell George AM stated that he wished to see an increase of organs donated in Wales but was against the idea of deemed consent for organ donation and that the ‘vast sways of the country’ were unconvinced that legislation was the way forward. He added that Kidney Foundation Wales noted that the good will of the people of Wales was imperative to the success of the legislation but was concerned that any good will would fade away through legislation.

Russell George AM also spoke of his concern that there had been a decrease in organ donation rates during the period of discussing the Bill and believed that this was a ‘backlash’ of the government’s proposals.

Russell George AM said if the Bill would increase donors and save lives he would support it but he was still very unconvinced with this argument.

The Minister for Health and Social Services responded to the debate and noted that Wales would remain part of the organ donor system across the UK by staying close to the Human Tissue Act of 2004.

The Minister said that this was a debate on the nature of consent and would not want to react to the opinions of members such as Jocelyn Davies AM during the current debate. He added that he was heartened that a number of witnesses to the committee agreed with the principle of deemed consent.

The Minister stated that the fall in the rate of organs donated in the last year was as a result of the number of people who could be donors declining in that specific period and this was good news and had nothing to do with the deemed consent argument.

The Minister said that in relation to Darren Millar AM the armed forces would be covered by the same principles as prisoners.

 

The Minister stated that following Stage 1 the Bill would be clearer and clarification would be ensured on a number of issues and that the Bill would lead to a cultural shift in Wales.

 

 

Motion agreed – 41 in favour, 5 abstentions, 9 against

 

Supporting Documents:

The Human Transplantation (Wales) Bill

Explanatory Memorandum

Health and Social Care Committee report

Constitutional and Legislative Affairs Committee Report

 

 

 

Motion to approve the Financial Resolution of the Human Transplantation (Wales) Bill, 16 April 2013

 

View the background to item 12.

NDM5200 Lesley Griffiths (Wrexham)

 

To propose that the National Assembly for Wales, for the purposes of any provisions resulting from the Human Transplantation (Wales) Bill, agrees to any increase in expenditure of a kind referred to in Standing Order 26.69, arising in consequence of the Bill.

 

The Minister for Health and Social Services moved this motion.

Motion agreed – 41 in favour, 4 abstentions, 10 against*

 

*Please note that Gwyn Price AM had indicated at the end of plenary proceedings that he had made a mistake while voting.

 

A full transcript will be available here

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