 Good morning, and welcome to the 33rd meeting in 2015 of the Health and Sport Committee. I would ask everyone in the room to switch off mobile phones, as they can often interfere with the sound system, but I also ask people to know that you will see many of us round the table using tablet devices, which are instead of our hard copies of our papers. We have received apologies from Bob Doris and Michael Russell substitute members in joining us in his place. Welcome, Mike. Mr Russell's first appearance as a substitute member, and I would ask him to declare any relevant interests. The only one I can think of is I am a part-time professor in Governance University of Glasgow. Thank you, Mike. We proceed then quickly to the first item on our agenda today, which is stage 2, consideration of the carers Scotland Bill. Minister, you have got your same team with you today, I see. We will move right on then to our business continuation from last week. I call amendment... Oh yes, sorry, we have in my anxious nature to get through all of these things. I need to ask you, first of all, if you agree that we take business in private, and that would be agenda item number 5, which is about our approach paper to access newly-licensed medicines, so we have agreed that you would do that. Can you have that agreement? Now we will move minister to call amendment 25 in the minister's name. Group with other amendments as shown in the groupings. I can ask the minister to move amendment 25 and speak to all amendments in the group. Thank you very much, convener. I would like to introduce this group of amendments to the committee that concern responsibility for the preparation of the local carer strategy. Health boards have a vital role in identifying and supporting carers, and I agree with the Health and Sport Committee's recommendation that the carers bill should complement the new integrated health and social care arrangements to that end provision will be made so that all functions under the bill that relate to delivery of services to adult carers will require to be delegated under integration schemes under the Public Bodies Act 2014. For young carers, all functions are capable of being delegated to the local authority and health board. To further recognise the key role of health boards in identifying and supporting carers, we are up for amendment 25. This amends section 28.1 of the bill, so that the duty on local authorities to prepare a local carer strategy for each local authority area will be jointly on the local authority and the relevant health board. As a result of this key amendment, there are a number of amendments that fall on from this amendment 47. Amends section 28.5 to set out the definition of relevant health board in relation to a local authority. Amendments 48 and 49 place the existing duty on local authorities to the factors set out at section 29A to E in preparing local carer strategy and makes this a joint duty on local authorities and health boards. Amendments 50 to 57 are also consequential to amendment 25, modifying section 30 on publication and review of local carer strategies so that the duties and local authorities set out in this section are placed jointly on the local authority and relevant health board. I move amendment 25 and ask that members support the rest of the consequential amendments in this group. Thank you. No members have indicated they wish to speak. I don't suppose there is anything to add minister. Indeed not. Thank you. Then the question is that amendment 25 be agreed to. Are we all agreed? Thank you. I now call amendments 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37 and 38. All in the name of the minister. Previously debated. Can I invite the minister to move 26 to 38 on block? Moved on block and read up. Ask whether any member object to a single question we put on amendments 26 to 38. No objection. The question is then that amendments 26 to 38 are agreed. Are we all agreed? Thank you. We now call amendment 82 in the name of Rhoda Grant, group with amendments 104, 105 and 106. Rhoda Grant to move amendment 82 and speak to all amendments in the group. Can I move amendment 82 and speak to the others in the group? These amendments are concerned the local carers strategy. Amendment 82 ensures that the strategy looks at preventative support to decrease the number of carers who break down in their role. A good preventative strategy will also cut down the number of people who require an assessment. It's really important that we value the work carers do and support them to continue, and the carers strategy must deal with this. Amendments 104, 105 and 106 deal with equality issues and ensure that the strategy takes into account protected characteristics and how people in those groups can be supported in their caring role. The situation that they find themselves in and their ability to access services can be affected by language, culture and relationships. It's important that the strategy recognises those differences and makes sure that services are person-centred and delivered in a way that is accessible to all those who need them. Thank you. No other members have indicated they wish to speak. I thank the grant for bringing forward the amendments. I see the preventative approach as being very important. It is set out in the policy memorandum that is accompanied. The bill is one of the key principles underpinning. The bill contains provisions that aim to promote such an approach. For example, as I mentioned last week's session with the committee, we have removed the regular and substantial test for someone to be recognised as a carer so that all carers will have access to an adult carer support plan or a young carer statement, enabling people to request an adult carer support plan or a young carer statement as soon as they become a carer or offering one to adult carers and young carers, as soon as they are identified, should mean that the plan can be put in place at an early stage. That should reduce the need to deal with crisis situations. Less critical needs for support will also be considered as part of the adult carer support plan or a young carer statement process. Nonetheless, prevention is important. I can see that it could be merit in the local carer strategy setting out plans for supporting carers on a preventative basis, which is the main thrust of Ms Grant's amendment 82. I think that we need to consider that amendment further, but as it stands, there are questions about whether it would be possible under the bill for a local authority to reduce carers' needs for support once they have a risen, indeed other than by providing them with support. There is potentially a compliability issue here with the way that the bill is drafted. On that basis, I would ask Ms Grant to consider withdrawing amendment 82 on the basis that we can discuss the matter further and bring forth an amendment at stage 3 that seeks to achieve the aim of local carer strategy setting a preventive planning, but with no unintended consequences. It is also important that the provision set at the carers' bill meet the needs of carers with one or more protected characteristics. However, I believe that amendments 104, 105 and 106 are not required to achieve the aim. Local authorities and health boards are already under a general public sector equality duty under the Equality Act 2010, duplicating and existing legal duties are necessary and wasteful of compliance resources within local authorities. To the extent that amendment 104 might ask more than the current section 149 duty in the Equality Act 2010, it could potentially give rise to legislative competence concerns if compliance needs to be addressed. There are existing powers in the Equality Act to do that. As the statutory duty exists already, I therefore ask Ms Grant not to move amendments 104, 105 and 106, but to meet with me to discuss amendment 82 further. Rhoda Grant, you wind up. Pressure withdraw. I am happy to meet the minister to discuss amendment 82 and we will withdraw that in those discussions. I am concerned that he does not see the need for 104, 105 and 106. I think that this is one, certainly in committee, we took evidence on and it was quite clear that if this is not in the face of the bill that sometimes those issues are overlooked in drawing up the strategy. I have listened to what the minister said. I do not believe that he is willing to have further discussions on this, so I might move those when the time comes. Thank you. The amendment is withdrawn. Do any members object? No, thank you. I now call amendment 104 in the name of Rhoda Grant, already debated with amendment 82. Rhoda Grant, to move or not move? Move. The question is then, that amendment 104 be agreed to? Are we all agreed? Yes. We are not agreed, there will be a division. All those in favour of the amendment, please show. All those against the amendment, 5. The amendment is therefore not agreed. I now call amendment 83 in the name of Rhoda Grant, already debated with amendment 70. Rhoda Grant, to move or not move? No. Does any other member wish to move? No. We now move to call amendment 39 in the name of the minister, already debated with amendment 25. Minister, to move formally. It moves, convener. Thank you. The question is that amendment 39 be agreed to? Are we all agreed? Yes. Thank you. I now call amendments 40, 41 and 42, all in the name of the minister and all previously debated. Minister, to move amendments 40, 42 and block. It moves on block, convener. Does any member object to a single question being put on amendments 40 to 42? No. No, thank you. The question is then that amendments 40 to 42 are agreed to? Are we all agreed? Yes. Thanks. I now call amendment 84 in the name of Rhoda Grant, to move amendment 84 and speak to both amendments in the group. I now move amendment 84 and speak to both. The amendment ensures that colleges and universities are consulted during the development of carer strategies. Schools are already included in the bill as part of the local authority, but young carers are also concerned about the support that they receive from colleges and universities. Those amendments will ensure that colleges and universities look at how they support carers, allowing them to access further and higher education. Thank you. Is there no other member who wishes to speak? Minister. Thank you, convener. I am not entirely clear that amendments 84 and 85 are necessary on the face of the bill. They seem to be seeking to ensure that the needs of young carers approaching the transition table of carers are taken into account when preparing the local carer strategy. However, the bill already contains provisions to this effective provision. In section 284A, it provides that local authorities and health boards must involve whichever bodies are representative of carers. They consider appropriate in the preparation of their local carer strategy. In section 284B, it provides that they must take such steps as they consider appropriate to involve carers. The list is not exclusive if a local authority and health board believe that it is necessary to consult any educational bodies in that area. They can choose to do so. I am not convinced that it is necessary to legislate for that. On that basis, I ask the member to withdraw amendment 84 and not move amendment 85. Minister, will the grant to wind up pressure withdrawal? I do not think that colleges and universities would be seen as groups representing carers. I think that there is a real issue about young people accessing education. We have issues in schools, which I think that the bill will deal with, but we have issues in colleges and universities as well. We see that young carers are often penalised because they do not attend as often as they should and they do not get the support that they should quite often from colleges and universities. I believe that the bill requires this amendment, so I will move amendment 84. Is amendment 84 agreed to? Are we all agreed? No. We have a division. All those in favour of amendment 84, please show. All those against the amendment, the amendment is therefore not agreed. I now move to call amendment 43, 44, 45 and 46, all in the name of the minister and all previously debated. I invite the minister to move amendments 43 and 46 on block. I move the block, convener. Thank you. Do any members object to the single question being put to amendment 43 and 46? No. The question is then that amendments 43 to 46 are agreed to. Are we all agreed? Yes. Thank you. I now move to call amendment 105, in the name of Rhoda Grant, already debated with amendment 82. Rhoda Grant to move or not move? No. Not move. Do any other members wish to move the amendment? No. The question is then that amendment 47 be agreed to. Are we all agreed? Yes. Thanks. I now call amendment 85, in the name of Rhoda Grant, already debated with amendment 84. Rhoda Grant to move or not move? No. Members not move. Do any other members wish to move? No. The question is then that amendment 47 be agreed to. Are we all agreed? Yes. Thanks. Do any other members wish to move? No. No. I call amendment 106, in the name of Rhoda Grant, already debated with amendment 82. No. Members not move. Do any other members wish to move? No. No. The question is then that section 28 be agreed to. Are we all agreed? Yes. Thank you. I now call amendment 48, in the name of the minister, already debated with amendment 25. Do any other members wish to move? No. Thank you. The question is then that amendment 48 be agreed to. Are we all agreed? Yes. Thanks. I now call amendment 49, in the name of the minister, already debated with amendment 25. Minister to move formally. Thank you. The question is then that amendment 49 be agreed to. Are we all agreed? Yes. Thank you. The question is then that section 29 be agreed to. Yes. Thanks. I now call amendments 50, 51, 52, 53, 54, 55, 56 and 57. All in the name of the minister and all previously debated to invite the minister to move amendments 50 to 57. On block, ask, yes, you better, yes, you better. Yes minister. Do any member object to a single question being put on amendments 50 to 57? No. No. The question is then that amendments 50 to 57 are agreed to. Are we all agreed? Yes. Thank you. The question is then that section 30 be agreed to. Are we all agreed? Yes. Thank you. I now call amendment 58, in the name of the minister, in a group on its own. Minister to move and speak to amendment 58. Thank you, convener. Third sector organisations and carers have raised concerns that the bill is currently drafted, may be interpreted as imposing a requirement on local authorities to establish a new information advice service, where such a service or part of the service is already provided by organisations other than the local authority. You will recall that this was, of course, an issue picked up on by your committee during its consideration of the bill at stage 1. Amendment 58 proposes additional wording to section 31.1 to clarify the policy intention. Although local authorities will have a duty to establish and maintain an information advice service, it is not envisaged that this duty requires that local authorities should themselves provide all and every aspect of the information advice that is required under section 31.2 to be available. Rather, it is expected that local authorities will understand, co-ordinate and make effective use of other statutory or voluntary and independent sector sources that can and do provide information advice that are available to carers within their respective areas. I want the existing information advice that is provided so expertly by organisations such as carers centres and young carers projects and by health boards to remain. In establishing and maintaining an information advice service or ensuring the establishment maintenance of such service, I would expect each local authority to make the best possible use of what already exists. That amendment will make clear that, where sources of information advice for carers are already available within the local authority area, there is no requirement to create any additional information and advice service. Those will be made further clear in the guidance that will be issued to local authorities about information advice services, as well, convener. I move amendment 58. Thank you. No member has indicated that they wish to speak. I presume that the minister does not wish to add anything. Indeed not, convener. Okay. The question is then that amendment 58 be agreed to. Are we all agreed? Yes. I now call amendment 59 in the name of the minister already debated with amendment 4. Minister to move forward. It moved, convener. Thank you. The question is then that amendment 59 be agreed to. Are we all agreed? Yes. I now call amendment 86 in the name of Rhoda Grant, grouped with amendment 88. Rhoda Grant to move amendment 86 and speak to both amendments in the group. Can I move amendment 86 and speak to both? Amendment 88 legislates for the carers charter. I am aware that there is work on going to draw up a charter between carers groups. Carers groups are also keen to see this enshrined in legislation. The amendment does not prescribe what the charter is, but it ensures that carers are involved in drawing it up. It is important that when the charter is in place that carers are aware of it and the rights it enshrines, hence amendment 86 places a due to advice and information services to make carers aware of the charter and its content. Thank you. No other members indicated that they wish to speak. As Ms Grant alluded to, a carers rights charter is not a new concept in this shell, so she mentions that a carers rights charter is under development. It has been somewhat delayed. The charter arose out of the carers strategy that was intended for adult carers only. Although not required by the carers strategy, we commissioned separate work for a young carers charter. That work is also on-going, and we expected to see the latest draft of the young carers rights charter later this month from the Scottish Young Carers Services Alliance. The current charter under development includes expectations of what carers can expect to arrive from guidance as well as consolidating existing rights. The charter envisaged by amendment 88 is a bit narrow in scope in the charter. We are preparing it. It is not, in my view, necessarily a burning requirement to have the charter set out in legislation. However, I am happy to support Ms Grant's amendments today, but in doing so, I indicate that they will require something pressing at stage 3. Let me indicate to the committee some of the areas that may require further amendment at that stage. Looking at amendment 88, any other enactment would include UK legislation, but the Scottish Government may not be in the best position to provide up-to-date information. It is also important to be clear that the charter is where rights that have been conferred elsewhere are collated and set out in one place and should not create new rights of itself. That is because there would not be proper Parliament to scrutiny where any future Government seeks to bring forward new rights for carers if that was the case. It would not be right to establish new rights in such a document on that basis. Having set out the key areas that would require some further attention at stage 3, let me reiterate that I am happy to support the grant's amendments today that seek to put a carers rights charter in statute. Are the grant to wind up press or draw? I'll just press. You can do it. Quit well on my head. Quit well on your head. The question is then that amendment 86 be agreed to. Are we all agreed? Thank you. You now move to call amendment 60 in the name of the minister. Already debated with amendment 6. Minister to move forward. Thank you. The question is then that amendment 60 be agreed to. Are we all agreed? Thanks. Amendment 87 in the name of Rhoda Grant and a group on its own. Rhoda Grant to move and speak to amendment 87. Can I move amendment 87? This amendment places a duty on advising information services to make carers aware of bereavement support. Too often carers feel abandoned at bereavement. They're often given little time to find their feet and adapt to their new circumstances. There can be quite intensive intervention in the final days of life. A carer will be used to having people in and out of the house and then suddenly that all stops with bereavement and people can become very isolated. Carers have also quite often given up work, neglected friendships in order to carry out their caring role and therefore they need to be supported through the transition. Thanks. I'm sporting Rhoda Grant with this amendment. I hear from Marie Curie that a significant number of people feel totally bereft, apart from their proper bereavement, once the person they're caring for has died. It is very important to look after those people at the time of great need for them. Minister. Milne has just said that I too recognise that it can be difficult, even devastating, when the carer's caring role comes. To the end, I'm aware that some local carer centres continue to support carers after their caring role ends. A number of members spoke about this during the stage 1 debate. There is provision, which can provide support for carers when their caring role ends. Bereavement care is provided across Scotland to relatives and carers following a death in ways that are responsive to their needs and which reflect spiritual, religious and cultural requirements. Someone has died in information packs and has been developed to help people through the first few days of bereavement that is widely used across the NHS in Scotland. Bereavement zone in the NHS inform website offers a lot of practical advice after a death and coping with grief both offer specific advice for children or young people, which young carers may find particularly helpful information on how to access these local services can be found on the NHS board website or directly from NHS staff. National services such as breathing space and cruise bereavement care in Scotland are available to those who need someone to talk to. The caring role may come to an end for a different reason other than the death of the care for person. The care for person may, for instance, have been admitted to a care home. This situation may be very difficult for the carer. The bill is focused on providing access to support to carers in order to sustain their caring role. The person-centred outcomes approach will ensure that carers are supported at the right time. Part of that will be critical that outcomes are reviewed to ensure the continued relevance of supporting services for carers. This is important when carers are caring for someone coming to the end of their life. The information advice service provided by each local authority must provide information and advice about health and wellbeing, including counselling services for carers that we would envisage that counselling might include bereavement counselling. There are a good range of services that exist. I recognise that carers might have particular issues and challenges such as coming to terms with not having a caring role for a lover when they are trying to get back into work after not being in employment. A rodi grants amendment is however very wide in scope as it looks as if it covers information and advice and bereavement support for carers when people are other than the care for person. I don't think that's necessarily the intention here. I would like to work with rodi grants on the alternative amendment at stage 3. On that basis, I therefore ask her to withdraw when we are at stage 7. It can be a matter that we can discuss so that we can get it right for stage 3. I think that it is really important that carers get bereavement support and that it should maybe form part of their assessment of how they will be supported when their caring role ends. I take on board what the minister has said about the breadth of the amendment. I would want it to be that wide. I would want it to be when somebody's caring role ends. With that in mind, I will have further discussions with the minister and bring forward an amendment at stage 3. The member withdraws the amendment. Thank you. Any other member object? No. Can I now move to call amendment 61 in the name of the minister who is already debated with amendment 4? Minister, to move forward. The question is that amendment 61 be agreed to or are we all agreed? The question is that section 31 be agreed to or are we all agreed? The question is that section 32 be agreed to or are we all agreed? Thanks. I now call amendment 88 in the name of Rhoda Grant who is already debated with amendment 86. Rhoda Grant, to move or not move? Move. The question is then that amendment 88 be agreed to or are we all agreed? Yes. I now move to call amendment 107 in the name of Rhoda Grant in a group on its own. Rhoda Grant, to move and speak to amendment 107. Can I move amendment 107? This amendment ensures that the NHS identifies carers and ensures that their health needs are attended to. Often carers, especially young carers, CGPs and healthcare staff come and go from their home, but they are never asked how they are coping and if they are getting the support they require. NHS staff are ideally placed to identify carers of every age and refer them to support services. There are instances when this happens and it has proved that God sent for the carers involved. However, often it doesn't happen and carers feel abandoned and ignored without help or support. All the members have indicated that they wish to speak. Minister, thank you very much. I understand and fully appreciate the need to promote carers' health and wellbeing. Indeed, all the provisions in the carers' bill are designed to ensure that carers can continue to care if they wish to do so in good health. The identification of carers personal outcomes within the context of the adult carer support plan and young carer statement is central to this. Also, the focus of the specific integration national health and wellbeing outcome relating to carers is that carers are supported to look after their own health and wellbeing, including to reduce any negative impact of their care and role on their own health and wellbeing. I would like to take a little time to mention the new way forward for the GP contract that is relevant to supporting carers. The Scottish Government has set a direction of travel around the future arrangements for the GP contract in Scotland. It is designed to reduce bureaucracy and to free up GP time for face-to-face contact with patients. The GP contract supports the role of the GP in the wider community. As I have said, the whole purpose of the bill is to support carers' health and wellbeing. The new way forward for the GP contract will enable GP's to have more contact with carers, which will enable carers to ask for health checks where appropriate carers can also be encouraged through the adult carer support plan and young carer statement to visit their GP to maintain their own health and wellbeing. In the national review of out-of-hours primary care services led by Lewis Ritchie, who reported yesterday, recommends a multidisciplinary team-based approach for the delivery of urgent care services. The proposed new model of care will help to mitigate against issues such as recruitment and retention of GP's. It will also encourage health and social care staff to work better together. The person-centred and joined-up approach will help to improve the management of staff availability, especially during peak holiday times consistency of service and the public's expectation of the service. All of those crucial, wider developments will support carers' health and wellbeing. In future arrangements, GP's will have a focus in supporting the planning of services locally through clusters of GP practices coming together to plan and develop services for the local community. The work to develop and support GP clusters will be a key strand of work for the health and social care partnerships integration joint boards. Crucially, carers are to be represented on the integration joint boards and can, with GP's influence of work to plan and develop services for the local community. The new direction of travel for GP's will free up GP time to deal with patients with complex needs, including time to support their carers. I propose to write to NHS boards to encourage them to continue to identify carers and support them in health settings. These health settings include GP practices but other health settings such as hospitals and community pharmacists are just as important in supporting carers' health and wellbeing. On carer identification more generally there are a number of provisions in the bill to support that. A key one is that each local authority and relevant health board must prepare local carer strategies setting out their plans for identifying carers in its area and obtaining information about the care that they provide or intend to provide. That will support carer identification by GP's. In light of all that I have set out I would ask the member not to move amendment 107. No other members indicated. Rhoda Grant. I welcome everything the minister said. Those are small changes. There is a culture out there that does not recognise carers. There is a culture out there where some carers do not recognise themselves as carers and do not ask for help because they are so taken up with their care and role that they feel they need to continue. Health professionals are in a great place to identify carers but often do not. I myself wrote some years ago now to GP's asking how many young carers they had in their practice. I was surprised at the number of responses that came back saying none when we know about 25 per cent of young people are young carers. I do not think that has changed hugely between then and now and therefore I propose to move this amendment because I think it is really important that we make it a duty on everybody to identify and support young carers, especially those who are best placed to identify them. The question is then, that amendment 107 be agreed to, are we all agreed? No. We have a division for all those in favour of amendment 107, please show. All those against. The amendment is therefore not agreed to. The question then is that section 33 be agreed to, are we all agreed? No. I call amendment 62 in the name of the minister and a group on its own. Minister to move and speak to amendment 62. Thank you, convener. Section 33 of the bill is introduced in fair powers on Scottish ministers to issue guidance to local authorities in respect of their functions under the carers bill. It also allows Scottish ministers to issue directions to local authorities as to the manner in which there are functions. There is currently no equivalent provision in relation to the functions conferred by the bill on health boards and on directing authorities of schools. Amendment 62 will address this and will allow Scottish ministers to issue guidance and directions to health boards and directing authorities in respect of their functions under the bill. For example, in respect of the preparation of young carers statements by health boards for young carers where they are pre-school children, this provision will require to have regard to any such guidance and directions when performing their functions under the bill. I move amendment 62. No member has indicated that he wishes to speak. Please, you need to add in for the minister. He did not do that. The question is then that amendment 62 be agreed to. Are we all agreed? The question is that section 34 and 35 be agreed to. Are we all agreed? Amendment 63 in the name of the minister is already debated with amendment 4. The question is then that amendment 63 be agreed to. Are we all agreed? Amendment 64 in the name of the minister is already debated with amendment 70. The question is then that amendment 64 be agreed to. Are we all agreed? Amendment 89 in the name of Rhoda Grant is already debated with amendment 70. Rhoda Grant to move or not move? Not moved. Members not moving. Does any member wish to move? No. The question is then that section 36 be agreed to. Are we all agreed? I now call amendment 65 in the name of the minister and the group on its own. Minister to move and speak to amendment 65. Thank you, convener. The question is then that amendment 64 in the name of the minister is already debated with amendment 65. Are we all agreed? Are we all agreed? No. Are we all agreed? Are we all agreed? No. Are we all agreed? Are we all agreed? No. Are we all agreed? No. that is on the which it is exorcised, and certainly the case that unpaid caring is a complex area that could become more so in the future. It is possible, for example, as the Social Care Act 2013, which is in the early stages of implementation, becomes more prevalent if further types of mixed-care may emerge. In light of the committee's concerns, I have brought forward this amendment to make section 13 power subject to affirmative procedure and I move amendment 65. No member wishes to speak. Question is then. Amendment 65 be agreed to. Are we all agreed? Thanks. Call of amendment 866. The name of the minister already debated with amendment 17. Minister, do you move formally? Move, convener. Question is then that amendment 66 be agreed to. Are we all agreed? Thanks. Now call of amendment 67 in the name of the minister already debated with amendment 17. Minister, do you move formally? Move, convener. Question is then. Amendment 67 be agreed to. Are we all agreed? Thanks. Call of amendment 90 in the name of Rhoda Grant already debated with amendment 78. Rhoda Grant, do you move or not? No, I move. No, I move. Members not moving. Do any other member wish to move? No. Okay. We now move to call of amendment 68 in the name of the minister already debated with amendment 17. Minister, do you move formally? Move, convener. Question is then that amendment 68 be agreed to. Are we all agreed? Yes. Now call of amendment 91 in the name of Rhoda Grant already debated with amendment 88. Rhoda Grant, do you move or not? No, I move. Members not moving. Do any other member wish to move? No. Then we move to the question that section 37 be agreed to. Are we all agreed? Question is then that sections 38 and 39 be agreed to. Are we all agreed? Call of amendment 69 in the name of the minister already debated with amendment 81. Minister, do you move or not? Move, convener. The question is then that amendment 69 be agreed to. Are we all agreed? Question is then that the schedule be agreed to. Are we all agreed? Yes. The question is then that the long title be agreed to. Are we all agreed? Yes. Stage 2 consideration of the bill. Members should note that the bill will now be reprinted as amended. The Parliament has not yet determined when stage 3 of the bill will take place, but members can now lodge stage 3 amendments at any time with the legislation team. Members will be informed of the deadline for amendments once it has been determined. I suspend the committee at this point. We now move to our second item on the agenda this morning, which is a third oral evidence session on the Transplantation, Authorisation, Removal of Organs, etc. The Scotland Bill. I welcome and my target is the member for the bill who has joined us. I will have that opportunity at some point in the decision to ask some questions. We have with us this morning Sally Johnson, director of organ donation and transplantation, NHS Blood and Transplant. Liz Waite and Irene Young, specialist nurses in organ donation, NHS Blood and Transplant. Professor Alison Britton. Convener of the Society's Health and Medical Law Committee, Law Society of Scotland, and Lorna Marson, vice-president of British Transplantation Society. Welcome to you all. We are not expecting any opening statements, so we will go directly to questions. The first question is from Richard Lyle. Good morning, ladies. Can I direct my question to Sally Johnson? I'm sure that Irene Young and Liz Waite may wish to come in, but I welcome the other two witnesses to come in. In a recent visit to Spain, we found out that basically within the hospital in Madrid we went to, there was a specialist doctor who basically dealt with, these were located within the hospital, and they dealt with the families. Basically, it was put to us that that was one of the reasons why Spain's rates are superior to Great Britain's. What in your view, and I don't take away the work that you're doing, and what you're doing in your everyday capacity, but what in your view would improve the rates in Great Britain, would it be the case, similar to advocating what's happening in Spain, and could you please explain to us, just for the record, what exactly happens within the hospitals when, unfortunately, someone dies? Is it a case that the acute doctor speaks to the family after it, and then the specialist nurses are brought in, or is it a case that specialist nurses come in? I'd be interested to know what actually physically happens in the hospitals at this moment in time. OK, that's quite a wide-ranging question, so I'll endeavour to answer it, and I may call on my colleagues to give you a bit more discussion about what actually happens, because they're on the front line. Essentially, we have a very similar system to Spain in this country now. The difference being that we have a clinical lead for organ donation in every hospital in the UK, who is then supported by what we call an embedded specialist nurse. That's somebody like Irene, who is dedicated to working with one or more hospitals, who will support the hospital development end of things, so that there are policies and procedures in place to identify and refer organ donors when anyone can be an organ donor, and make sure that their family is approached after they've called in the specialist nurse. The best practice would suggest and is mostly followed, not always because these things are complicated, that the doctor would speak to the family and make sure that the family understand that their relative is either dead or irretrievably dying and unable to be helped. Once they've understood that, then normally the specialist nurse would come in and provide support in helping them to reach a decision about organ donation. So it's not radically different from Spain. It may be slightly different in that we run a non-call rotor, so it's not always the same nurse in every hospital, but we provide a 24-7 service, and there is always a nurse available to go and talk to a family when required. So I think from that point of view, much of what has been done in Spain has also been done in the UK following the implementation of the Organ Donor Task Force recommendations, and that's why donor numbers in the UK have increased by over 60% in the last six, seven years. I guess there are two things that's worth noting with regard to Spain. Their model of end-of-life care is very different from the UK. They have many more intensive care beds, and I think it's true to say that, as a result, they have more people who die from brain death, who spend longer in hospital, and their families are approached for organ donation. We don't have as many potential donors as Spain appears to have, and that is why our numbers are lower in one respect. There is also the issue of consent, but I think that this is quite complicated. There are two ways in which you can die to become an organ donor. You can either be brain dead or brain stem dead, as you normally describe it, and those are people who are ventilated following a serious brain injury. There is quite a lot of time with those patients normally to talk to the families, but there are limited numbers of patients who die in that way in the UK compared with Spain. As a consequence, we have developed a world-class donation after circulatory death service, so that's people who die in the way that we're all familiar with and people who die on television, or at least actors die on television. That is a slightly different prospect, because in those circumstances, this is somebody who is dying, but for whom further treatment is futile. We approach the family and seek agreement to proceed with organ donation. Obviously, if they say yes, then we call a retrieval team. The retrieval team has to wait for the person to die and then retrieve the organs. Predicting death is extremely difficult. Don't always die within the timescale where their organs will be usable, and therefore the number of people who go on to become actual donors from that pool of donors is much lower. If we look at the consent rates in this country, I think our consent rates for donation after circulatory death are probably some of the best in the world. We have a very wide field of donors that we look at, but actually 50% or more is quite a good rate for that group of donors. We still have a lower rate of consent for donors after brain death, although it's rising and the UK consent rate in October was 69.5%, which suggests that we are approaching moving towards world-class levels. That was a donor rate of 26 per million populations. That's in line with where we're going, with the UK-wide strategy and the Scottish plan for implementing that strategy too. I think there's quite a lot of similarities in terms of the processes compared with Spain, but there are some differences in terms of end-of-life care and the potential pool of donors. People often don't realise that the pool of potential donors is tiny. It's only about 5,000 people across the UK who die in circumstances where they can become organ donors, even though over half a million people die each year. That's part of our challenge. One of the things that struck me on the visit to Spain was the percentage of ex-pats that British residents in Spain donate to their organs at a higher rate than what there is in Great Britain. Is it a case that we don't... This sounds very... You know, encourage people to... Educate people to say that their organs can go on to save someone's life. In my last couple of years, my mother-in-law and father-in-law died, unfortunately. No one approached us at the time to ask whether we were to... I didn't think about it at that time to be quite honest with you, only this bill has made me think about it. Do we physically, with the greatest respect when I say this, approach families on a basis as and when to ask them, will you donate your organs to save someone else's life because, at the end of the day, it could possibly do so? I'm pretty confident that, in about 90 per cent of cases in Scotland, if someone can be a donor after brain death, that potential will be identified and referred to our service. It is lower in respect of donation of the circulatory death of a complicated situation to recognise that donation is possible. I suspect that the reason that you were not approached was because your relatives were not able to be donors, and we don't approach people where they're not able to be donors. In terms of education, I think that Scotland has had a long and very excellently sustained education programme in schools. You've had excellent campaigns, which has increased the number of people on the organ donor register to over 40 per cent in some parts of Scotland. Spain doesn't have an organ donor register, interestingly. They rely solely on family conversations, but from my understanding of the situation in Spain, there's often more time, and it's very difficult if people haven't thought about this issue previously to get them to think about it and reach a conclusion that's positive if they're incredibly shocked, grieving and this is coming to them absolutely new, which is why there's been such a focus on trying to get people to have a chat about organ donation while they're alive so that their family and friends know what they would want when they're dead. The reality is that whatever system you have, it is always helpful if people go into that conversation knowing what their relatives wishes are. But there's not always a correlation between the amount of people who have signed up in Sweden, very, very high rates of people, awareness, signing up to donate, but it doesn't equal a higher rate of donation. There is no magic bullet. You've got to get lots of stuff lined up. That's the point. I was just responding to some of your narratives there. I think that we both agree that it doesn't always equate to an increase in the Spanish focus in that important conversation, which is at the point where a donor can be identified and there's an outcome there that is to be sought after, I suppose, that the important conversation is at that time of death, if not when we all decide to sign up in the Saturday night or when the Chinese or something. We'll come to some of that later, maybe with the legal requirements and whatever. Thank you. I'm also a transport surgeon, as well as being vice president of the British Transportation Society, just to put whatever I say in context. Two points that Sally has raised which I think are worth reiterating. One is the provision of intensive care unit beds. I think that that is a real challenge for us around organ donation. While there is pressure on intensive care unit beds, then the length of time that is required to ensure those conversations are had without any sense of urgency and to allow the relatives to come to terms with what is happening, has happened to their loved one. I think that their care of the relatives, you like, could be improved with improved provision of intensive care unit beds. The second point that I want to make is really to emphasise the positive aspects of the publicity campaigns that have been run in Scotland. You're right, of course, the important conversations take place at a tragic time but one could envisage that it's much easier for a relative to make the decision for organ donation if they knew that that was the wish of the person who has just died and if they had already had that conversation. I think that the publicity campaigns are also very important as they encourage people to have the we-chats. Yes, it was weight. I have a question for what Lorna and Sally have said that if there is the potential for donation in either the intensive care unit or the emergency department, we are contacted and we would be having that conversation with those families if there is the potential for donation. We heard last week that somebody else had a question on intensive care beds. Does that mean that, if we had more, we would have more donations or more ICT units so we would have more donations? I think that our intensive care colleagues would probably say that we would be able to have more organ donors if we had more intensive care beds. I'm trying to recall these figures. There are about 10 per million population intensive care beds in the UK and I think that Spain has about 23 per million populations so there is quite a big gap. That would be the focus on the ICT units. That is where these conversations are more likely to take place. The other question that follows from that is that, in your evidence, you said that this bill could create another 70 transplants or so? My statistics department has done a quite complicated assessment and it does depend on the whole range of things. It does depend on making sure that every donor after circulatory death is referred and that we achieve concentrates which are broadly similar to the best in the world. That could be at the upper end of what we could expect to see. You went on to... I'm just thinking on this issue of capacity. The capacity of the ICU beds, the intensive care beds, the capacity within the workforce today. You're saying that if we generated these additional transplants where we're going to test the capacity that we've got, was that what you were suggesting in your evidence? Yes, that's true. I think that we'd have to work this through very carefully, but we have limited numbers of staff on call at any one time and they have to cover quite large distances as you can appreciate. I think that we may find that there are times when we would have to call in people who were not normally on call and that would put strain on the system. We might need some additional staff to cover the on call. To cope with any additional, even the additional 70, we would have to increase the levels of staff. I'm just trying to get at the point that this is not a silver bullet. There's a whole lot of issues here. In Scotland, we have about 100 donors a year. An extra 70 is quite a big high cup. That's quite a lot for the team to cope with. Is that like a capacity with the increase? We're coping with the capacity now. We're coping with the capacity, but we could do more if we had more intensive beds or we had more staff that would deal with any subsequent rise and those people who were prepared to donate. We could, but we should just be slightly cautious about assuming that the intensive care beds would automatically bring the extra number of donors. It would probably give us more capacity to admit people through an accident and emergency departments into intensive care. In reality, if you have more intensive care beds, they're mostly filled up with more people who need intensive care. Yes, I'm aware of that displacement. It's saving people's lives as well. We heard last week from clinicians that some clinicians are more enthusiastic about this. That might be part of the problem. My job is to try and save that person rather than bring about an ordination. There are priorities there. Is that an issue in terms of... You say that you have clinical leads for transplantation in Spain. There is a division between those clinicians who are actively fighting to save that person. They decide that person can't be saved. They go through the normal procedures and agreement that the person has been in there. Then they hand it over to a completely different team. In our case, this is part of the team that they would hand to. If we agree that some clinicians' consultants are more keen on transplantation and ordination, we have the hierarchy that exists, whether we like it or not, about how much nurses have influence on that process. It's against the consultant influence on that process. You have two different areas of work. One is the acute situation, a potential donor in the intensive care unit. The other aspect is a lot of groundwork that has gone on as part of the outcome of the Organ Donation Task Force to work with the intensive care society and intensive care units across the UK to promote organ donation. You are right. Arguably, it's a conflict for many intensivists as they work so hard to save people's lives. I think that even some of the clinicians historically particularly have struggled with changing their viewpoint to consider organ donation. A huge amount of work has done and NHSBT has already described have set up the clinical leads for organ donation. They are consultants, usually have some input into intensive care, either as anesthes or as intensive care consultants. They understand the workings of the intensive care unit and they are our ambassadors for organ donation at consultant level across the UK. This is part of a huge amount of background work to work with all parts of that team to encourage organ donation and promote organ donation. That has been a key part of the work of the last seven years now, hasn't it? When they're not there, they're not there 24 hours but if they've done the background work, if they've done the work on the ground about promoting organ donation and working with their colleagues to actually encourage them to believe in organ donation, then that will continue even if they're not there. That is what we've seen and that's why we've seen in Scotland an 82% increase in the number of organ donors since they've worked. We don't lose out on organ donations because the consultant is not there or the nurse is an iding young desperate to get in there and just say, no we don't. Part of my role is to work with the clinical lead in my hospital and my role is to audit deaths within the unit as well as education and I'll go into the unit every day to see whether there's somebody who could become a potential donor on that given day and because of the work I'm doing with my clinical lead if someone slips through the net, that particular consultant will be challenged by my clinical lead at their weekly senior medical staff meeting. In a way it's almost like a drip feed system that we've had. As the medical staff have become more comfortable with our role, they're more comfortable discussing potential donors with us because they see us going into the unit every day and if they do forget an inverted commas to refer a potential donor to us then either my clinical lead or myself will pick that up to our daily visits or weekly meetings in the unit and that's replicated through all hospitals within Scotland. If you want me, it's a safety net. I think what's also very important to say is that a lot of our referrals for donation do come out of ours and I think that's through a lot of the work that we've done in the hospitals as Lorna and Sally have alluded to there's a huge amount of work going on with the clinical leads and with us as a service so they know how to refer they know how to get in touch with us and we do run a 24-7 on-call service so that we would be able to go in. Malcolm Chisholm. Quite a lot of your evidence was about the role of proxies and the authorised investigating persons and that's come up in previous evidence to areas and I suppose the other issue I'm interested in reflected in some of the evidence is how what's proposed in the bill compares with what already happens in other parts of the UK. Starting with proxies I think there's an issue about the number and there's three proposed and I believe there's two in other parts of the UK so I imagine that wouldn't be an issue of principle in terms of the Scottish bill but could you tell us how much of the UK is similar or different to the role envisaged in the bill? It's very similar I think one of the things that perhaps people aren't aware of I think at the moment we've got 15 people registered as proxies across the UK despite the fact that that's been possible for some time now because you have to provide a witness evidence that somebody wants to be a proxy it's not as easy to do but then again you can't really just send somebody else's details off to NHS Blood and Transplant to go on a register without their authorisation to do so so we do have to make sure that the processes are right to get people authorised so I don't think my specialist nurses have ever actually dealt with a proxy that's so rare just directly with the families But for whatever reason it's not been used but in principle is the role similar and would they be able to one of the issues is the relationship in the bill that would arise between proxies and families but potentially could that kind of situation arise in other parts of the UK even though it doesn't tend to because there aren't any It could, yes there's always a challenge in different roles trying to agree on the same thing The nurses would probably say that it's hard enough sometimes to get family members to agree without throwing anything else into the mix Professor Bitton wants to respond Malcolm I think we had said in our submission that the appointment of a proxy does seem to be an accepted form of medical decision making and we would have support the appointment of the proxy However, we do have concerns that the bill provides that the proxy does not need to be informed of their appointment and find that quite incomprehensible at such an intimate moment such an important decision to be made such a responsibility that the individual might not even know particularly when time may of the essence that such a decision is going to be made So presumably an amendment could be proposed but it wouldn't change the principle you support the idea and also you're saying it's established practice across the UK I think that's quite useful because some of the evidence on the bill has suggested that this is some new idea that why is it being introduced and it may well be that In other forms of decision making if the patient for example becomes incapacitated for a proxy or somebody acting in an advocate's role would not be unusual but the emphasis on the face of the bill is looking for this three tiered cascading proxy process we would not want to see that the family are being marginalised in any way the role of the family seems to us to be absolutely fundamental and if the other one is sitting round the bedside surely they would be the ones to have this conversation with rather than taking the time to find a proxy who may or may not know that they have even been appointed I would like to really reiterate what Professor Britton just said I'm not clear what added value a proxy would bring in this set of circumstances I think that we have to understand that there is an urgency about the decision making process and that already some families withdraw authorisation for organ donation because of the length of time that it takes to do that I think the other thing is that we are reliant on the family as professionals, as specialist nurses particularly to gain as much information about the donor as possible the medical information their behavioural information about the donor in order to assess the safety of those organs for transplantation and we've recently had high profile cases of transmission of donor disease into recipients elsewhere in the country we are reliant on the families for much of that information and therefore anything that marginalises those families from this decision making I think has potential to be detrimental to the process and to the safety of those organs for transplantation Okay, thanks for that Can I go on to the authorised investigating person my understanding is that there is such a role in Wales and therefore again I'm wondering or do you see it as different from the role in Wales In Wales the specialist nurse approaches the family as they do currently I was trying to describe the difference between the different legal systems in Wales and currently anybody in the UK can join the organ donor register can record a refusal to donate or can appoint a proxy except within Scotland or appoint a representative In the UK accepting Wales as of today if you haven't done one of those three things it is your family's responsibility to make your organ donation make the organ donation decision on your behalf If in Wales you have done none of those things you have deemed your consent by your inaction and the expectation is unless the family has strong evidence that you did not wish to be a donor that you will then go on to donate If we look at the authorised investigating person then it seems to me from what I have been able to understand from reading this that they need to apply a series of cascading tests to determine whether there is any reason why you should not be an organ donor and then authorise the donation and certainly that does not appear to be a role which is entirely consistent with supporting the family through this process so it appears to be an additional role and I am unclear as to how that would work with the other people involved in this process how the timing would work and what that might do in terms of the family experience of organ donation I think the intention is that it is not an additional role I mean it may be that the member will ask you questions about that but the intention is that is why I drew the Wales analogy that the role of the specialist nurse changes and is that not the case in Wales the role of the specialist nurse has changed with the new legislation that starts today I think that is the analogy that is intended They have a more presumptive approach when they talk to the family but it is still about working it through with the family there is not a suggestion that the family at the end of the process and certainly the discussions that we have had with our nurses is a certain sense that being an authorised investigating person and the legal requirement of that presents some conflicts with their family care role I think that the Law Society has a view it would be interesting to hear you on that I think that just following through on what was said there this looks very complex and onerous role because you are not only applying the interpretation I agree that you are looking at this cascading set process in relation to proxy decision making but at the end of the day there is nothing in the face of this bill or in the policy memorandum or in the explanatory notes that even mentions consent the focus of this bill is about authorisation and the buck stops with the AIP that they take the final decision whether or not authorisation can be given or not so this individual I think should probably not be a healthcare professional because to me that would seem to be a conflict of interest and on the one hand you have somebody advising the family counselling the family taking medical history they may have one view that this authorisation needs to be given so we remain unclear who exactly would take on this role I think that certainly merits a lot further investigation but my understanding is the intention is it should not be a new role but it should be a changing role of the people who deal with these matters at present The buck stops with the family the family to yes, if somebody has given authorisation on the organ donor register they have given authorisation but we are in a uniquely sensitive arena and we want to work with the consent and cooperation of the families not just because we think it's best for the family but also because it's best for the potential transplant recipient what we don't want is a family who doesn't cooperate and doesn't give us all the information that we require to make sure the transplant is going to be safe and we know, you saw evidence from some of the families, some of the questions we have to ask are quite difficult and quite intrusive it's hard enough asking those questions to a family that has said they want to be a support organ donation it would be very much harder for a family that didn't wish to support organ donation but surely there's no suggestion in the bill that is there any other response Professor Britton that you must be my final point surely there's no suggestion in the bill that the wishes of the family are going to be overridden there's obviously an issue when there's a proxy which may be in a small number of places but it's not clear to me that there will be 70 plus extra donors which is I would have thought a very strong argument for the bill but then you go on to say that the law is currently proposed may result in conflict with the families but it's not clear to me why it will because the families are still being asked and there's no suggestion that the nurse is going to disregard the views of the family My reading of the bill and the accompanying memorandum was that if the authorised investigating person authorised donation then that would proceed regardless of the family's situation I didn't unless the family had strong evidence that the individual had said they were not prepared to authorise organ donation then it read to me as though the AIP would authorise regardless and that's where I think the concern arises I agree with Ms Johnson in our submission I actually pointed out the confusion here on the face of the bill the family are consulted only to clarify what the wishes of the patient may have been and the policy memorandum at paragraph 37 says and I quote the bill does not allow relatives to block the removal of organs their own views and preferences about organ donation they are consulted only to help established whether the deceased person had expressed any objection and then paragraph 55 again of the policy memorandum says the current position of not removing organs if doing so would cause significant distress to the family even if authorisation exists and says nothing in the bill changes this given the importance that we've heard about the role of the family that is really not clear at all what the role of the family is actually going to be yes, I agree I think from a practical point of view I think the AIP we're dealing with families that have a very very sensitive period in their life and I think if an outside agency or outside persons coming in who's maybe not clinical if they decide that donation is to go ahead and the family don't agree with that I think that may cause problems part of my role when a family says no is to try and find out why they're saying no it may be because they don't actually understand the process so my job is to try and tease out from them why they're saying no and quite often if we can correct their misconceptions about their understanding about the donation process they then change their mind and go on to say yes if you've got an AIP in this role that part may go and you may lose a potential donor the tasks that are described that would be carried out by the AIP are standard they're not a contention you're establishing whether it's a good donor whether the person is resident in Scotland all legal requirements so the tasks themselves are would be standard or maybe could be described even more so so is it not a question of clarity because we've identified some problems earlier on sometimes about the complexities within the system about some more in terms of capacity or some clinicians more enthusiastic than others and the different priorities are not a role and a more presumptive organ donation scheme or a retrieval scheme that somebody whether it be I think it was described last week's evidence that it was described that the specialist nurses actually do a lot of this now so it's not about whether this job needs done or whether it would be better if this was on a more legal footing or not would that aid the presumption the direction that we've travelled I think from an NHSBT perspective it's really important we'll work with him whatever legal framework we're given obviously that's what our role is but we do want to make sure that it's as easy for all of the families and clinical staff involved to come to what we believe is the right outcome so yes to donation and that it's clear about who's responsible for what how the different parts work and that it happens smoothly and importantly quickly because we know that particularly for donors after circulatory death these are often families who have had no rest you know it's they are absolutely strung out and they can't take very much more time to make a decision and therefore the longer it takes the more likely it is that you end up with the wrong outcome Rhoda Grant I suppose can I turn the questions on their heads slightly my understanding is the role of the EIP is to give people a bit of comfort that things are done properly and that you know everything is being properly investigated and people's organs are not being taken without their consent how can we achieve the same level of confidence maybe using the specialist nurse what kind of precautions would have to be on the face of the bill and what happens anyway to make sure that this would never happen to give that level of comfort I suppose I'm partly quite shocked the idea that people think that organs are taken without appropriate authorization at the moment so I hope that that's not the case that's not what I meant because the bill has changed so how do you in a presumptive situation I think it is about being able to set out very clearly what the expectation is of the people of the country in which you are so what Wales has done is have very much said you've got choices you need to make decisions but if you don't make decisions this is what will happen with a very intensive communications campaign which has lasted two years and which has certainly done leaflet drops to every single household twice plus an additional drop to everyone approaching the age of 18 so something about getting everybody to understand what the law is that's operating and you know it's day one today so they haven't quite done the launches kind of now which is where I was going to be that's fine so to some extent you know we're this is new in terms of how you deal with families and make sure that they have confidence but the expectation is that the nurses will explain to families that you know this is how the law works in this country these are the options that people have we've checked the organ donor register and this is what your relative had decided either they had recorded a decision or they hadn't if they hadn't recorded a decision then the expectation is that they would go on to be organ donors but there is permission within the law in Wales to practice clear expectation that if somebody doesn't join the organ donor register but very clearly makes their wishes known to their family so by that I think you have to test for reasonableness about their unwillingness to be a donor and that would be something along the lines of the nurses exploring with the family they haven't recorded a decision on the register they're expected therefore to donate because they've deemed their consent have you any information otherwise and if the family said oh well that they told us they didn't want to be a donor the nurse would then need to go on to explore what that conversation was like so was it a flippant remark on the way out to make a cup of tea that said well they wouldn't want my liver so you know not after all I've drunk so don't sign me up for that or is it a proper discussion between the family about what they wanted to happen and clearly if it is the latter then donation would not proceed because that would be clear evidence that person didn't wish to be a donor if it were the former then the nurse would need to test that out with the family to see how strong that intention was and that's how you give confidence with the family in much the same way as we do currently really okay just a brief observation on that that on the face of the bill just now a proxy decision maker may not necessarily be a family member and the provision is that they would be consulted in this three stage cascading process perhaps even before any family member is approached I think I'll leave the proxy just to the side because I think that was instead of a family member and certainly people representing the views of looked after children for example we're very keen on a proxy because they didn't have close family who could make that decision for them so I don't think we see a proxy as the normal it's the exception to the rule but going back to the AIP we took evidence earlier in the process from clinicians who said even under this bill they have a duty of care towards the family as well and that is normal so if it looked as if the presumption to donate was going to cause additional distress to the family bearing in mind that they're already distressed additional distress to the family and they wouldn't go ahead with that in spite of the family not having a role on the face of the bill the duty of care on clinicians would actually give that protection to families I think that's absolutely one of the most important issues to my mind about this bill is that ultimately it is very unlikely that any of us that work in the clinical arena will go directly against the wishes that are at the beginning of what will be an intense grieving process and I think that's right I think it's right as a clinician I think it's right but also I think it's right because we've all seen the power of negative publicity and it would only take one bad story about transplanters taking organs from somebody whose family didn't want them to actually have a significant impact on the number of organ donors we see and we've seen that historically with organ retention scandals in the past it does impact on people's behaviour so I think for lots of lots of reasons it is right that even irrespective almost of the legislation that the family's wishes are taken into account and my colleagues work every day with families such as these to try and encourage them towards organ donation but ultimately to accept if their views are strongly held against it and that will not change should not change Do you want to test it? We have some evidence to you about the ECHR and does feel where it would come in if we just... Yes, if I can just ask one final question on that do we need the role of the AIP then? Having specialist nurses carry out the protections of the bill I think my concern about the role is that if you've got a family who are against donation and the AIP decides for it my role is to find as Lorna and Sally have explained earlier on is to find out as much information about the donor as possible to make sure that the donation is safe and that you make a decision that goes against their direct wishes how co-operative would that family be with me when I need to find out some of the most important information I can find out for the transplantation I think that would be my big concern if you bring another role in or another person into the equation that the family aren't quite sure who they are I think that that may cause problems I think that there's also a huge amount to say that of the relationship that we have with families just now and the work that we are doing it is a dreadful time for them as we've heard already from our speakers and I think to change things dramatically would potentially cause problems at the moment we work collaboratively with the intensive care units and the ED departments they form a relationship if they can with those families to take them through a dreadful grieving process for them we equally support that in the collaborative work that we do in coming in with our condemnation and having that chance to form the relationship and gain all the understanding and information that we need from that family at that difficult time following on from a legal point of view if that engagement with the family was on-going then we would not see the IP in this role of possible conflict with the family needing to legally arbitrate what if a decision could not be reached but if you are having this clinical approach that time is taken with the family from people who are experienced in this area and have been experienced for years in this area we would certainly see less potential for conflict there I think it was in that context that if the family's wishes were overruled then it could engage article 8 of ACHR is that something that you would see happening? I don't think we actually we didn't look at that in our submission in article 8 right to private life again maybe I'd have to take this way which I will do but briefly today I don't think that you would be invoking anything different in examining the rights under article 8 that you may not be looking at already you would be looking at the autonomy of the individual what views did they have can we build a picture on what their views and preferences would have been there and in the absence of any evidence to that state then I would think that there may be a challenge but I'm not really seeing a situation given the conversation that we've had today that the values of the family the views of the individual would not be fully explored Can I finally just based on what Irene Young said earlier so if the family didn't agree to donation and I think we are agreed but we're talking almost the worst case scenario I think we're agreed that if the family don't agree nobody would put them through that but as an added protection without the role of the AIP if the family felt that they were in some way being pushed into this and they didn't agree they just withdraw their information about the potential donor and then share it I suppose potentially they could and that would be to the detriment of potential transplantation because if I can't with a limited amount of information but the danger with that is that you could transmit potentially life threatening conditions to the person who's receiving the transplant so it's vitally important that we're able to build up a relationship with the family so they trust us and they will impart information to us we also contact the family GP and other clinicians who are involved in the patient's care but it's vital that we get information from the family about the day to day that person GP's may not know everything about somebody you may have a patient that doesn't regularly attend the GP at all so it's really important that I gain the family's trust to enable them to give me that information Mike Mackenzie Thank you, convener The bill seems to me to carry the fundamental implicit assumption that introducing an opt-out system rather than the current opt-in will in of itself give rise to a greater supply of organs would you agree with that fundamental assumption and if not, why not I don't think that the evidence based on the international evidence based on the Spanish model or Belgium or other countries that have an opt-out legislation is clear that that in itself increases the numbers of organs for donation I don't think that we know the answer So we can't really see one way or another Some of those opt-out systems have been set up for 20 years for example in Belgium and so actually if they're not clearly increasing the number of organ donors in themselves then one could argue that in itself that changing legislation is not going to make a difference going down in numbers Thank you Any other witnesses with views on that or even if you're reluctant to state a particular view it would be interesting I think for the committee to consider the arguments on either side because some previous witnesses have suggested reasons why they feel it may have the opposite effect and there are those of course that feel it would increase the supply so from your perspective I think it would be useful for the committee to hear the pros and cons as it were From a legal point of view we would be asking the question what would legislation in this area bring to the debate that is not already there or to the process but we cannot comment on the medical side in relation to statistics Accepting that that will not be the only factor and there are many factors that will influence this Is it not the case that those countries with the soft opt-out generally have higher organ donations There is some evidence that there is a correlation between a high donor rate and soft opt-out but there is no cause and effect between the two Absolutely proven That's the difference That's helpful If you think about Spain and Belgium you know Spain has been pursuing 40 donors per million population since 1989 We've been at this game since 2008 We're doing pretty well in catching up and so I think it's just there are I would caution against thinking that anything is a magic bullet I wish the world one otherwise I'd be far away but what we're searching for is if we could do better If this is all about partly about cultural change changing attitudes within those people who work in that area would this be an aid would this generate that debate that takes us that other step It's incremental We're not implying any criticism at all about the current system I think we're examining a proposal that seeks to take us that other step to make some additional progress I think that's what we're examining It might be worth One of the things that is definitely evidenced in Wales is that when they started on this journey hardly anybody in the country thought about organ donation and their latest survey I think I can't remember the exact figures but they would certainly be able to tell you now has something like over 80% of the population is aware of the legislation So they have got something into the consciousness of the public through going through a legislative process accompanied by a very thorough communication process We wait to see what will happen Yes That's the interesting point, isn't it? I think it's whether a very good communication process without the change in legislation would have the same impact We don't know that certainly in Scotland we have as I mentioned already run publicity campaigns where there is evidence that that has led to an increase in the number of people signing up for the organ donor register Is it possible then to argue irrespective of the bill going any further or not that in engendering the conversations that we've had covering areas tangential to the subject matter of the bill even that sort of benefit so this bill is already creating a benign, a good, a helpful effect There seems little doubt that it has raised the profile chaired through the media conversations it's reaching people's homes people's consciousness and this really should be about dialogue, good communication so if it contributes towards that good communication then yes it is a positive thing Last week the committee heard from a gentleman who I think he was a bioethicist but he specialised in ethics and it seems to me a fairly theoretical discussion which seemed to centre about his view that we own our organs even after death that was a concept I struggled with in terms of I can't imagine that we want anything else after our death but are you able to give or shed light on a more from a more practical standpoint on the ethics that attend this issue There is many different views as there are ethicists I think it's a discussion and a topic of debate Do your organs belong to the state whatever that is at the time of death or do they belong to you or do they belong to your family and I suppose being a clinician and being a surgeon so at the practical end of the clinical side I would say clearly that's an important argument to have as a bioethicist but actually if you're faced with these decisions in the middle of the night we adopt a rather more pragmatic approach and I think that is around making the right decision for the transport community but for the donor family as well and I think that we have to remember in this that donor families who do agree to donate organs gain a huge amount sometimes of solace and I'm sure you've heard from donor families during this discussion that some good has come out of this tragedy so I would avoid the question by responding in a more pragmatic way Yes Professor Black I think it's all about respect at the end of the day rather than trying to focus on the legal ownership of organs which yes that debate is there but if you reach an agreement at the end of the day where the families fail that the adults, their loved ones' wishes have been respected there has been an agreement and organ donation hazard has not taken place I think that would have more value under those scenarios rather than arguing about ownership Elizabeth Wade I think that on behalf of the families that we've worked with I think that they feel that their loved ones are giving something absolutely huge for the benefit of others Thank you Dennis Robertson Thank you convener and good morning I wonder if I could maybe turn to the organ donation register that has been basically set up from the Welsh system some areas seem to me and I think that the law society indicated that there was an issue maybe about data protection with regard to proxy would that be the case I mean if we don't have that signature from the proxy or the representative and that signature has been witnessed therefore it wouldn't be compliant and couldn't be turned into the register would that be the case That wasn't something we made a submission on we talked about the proxy decision maker knowing that they would be involved in this process but we didn't personally see that the value in looking at whether or not any signatures had been made there wasn't something we submitted on With regard to data protection where would we stand if we were entering in details of a proxy without their consent The data protection would not be compromised unless you were forcing the proxy decision maker to make a decision at that time and there's nothing on the face of the bill which would suggest that the proxy decision maker would be being forced into making a decision so on that case they're then not being a proxy and they're not representing the wishes or views or values of the adult in question then they would not be a proxy at that time and that would not be compromised So there's no compromise to data protection at all within the register In my view if the proxy decision maker who has been appointed without their knowledge refuses then to make any decision there would not be any compromise So there's one last point Sally Jones My understanding and the advice that I have received is that we cannot hold data about people that has not been given to us by the person So even if you don't have it witnessed and all of that rigmarole I can't volunteer Liz as my proxy and ask the organ donor register to hold her data without her consent to do that So that's really important So you're saying that the information could not be entered into the register then Not without the agreement of the person who's been nominated Okay I wonder if you mean if I could move to the age of consent because there obviously is a difference and the organ tissue Scotland Act 2006 basically a 12-year-old can enter their cells into the register so they can opt in without parental consent but we're also looking at the age of consent within England Wales as a child being under the age of 18 whereas being proposed at 16 in Scotland Does that present a degree of conflict that does it make it difficult then in terms of entering information to the register There's three observations there The first one that the current position as you rightly say is that a young person from the age of 12 can opt in and our view is that it's perhaps a different question whether or not we're deemed to be opting in unless they opt out so I think it is a slightly more onerous decision for them to make and we would prefer that they had that opportunity to weigh up the pros and cons of making that decision Age of Legal Capacity Scotland Act allows a young person from the age of 16 to consent or refuse consent to medical treatment to be thought about further I'm not sure that agreeing to organ donation is actually medical treatment but the last point and perhaps the most important is if we are looking for a consistency in relation to the United Kingdom the Welsh provision has provided for aged 18 so it also hopes that if somebody from another jurisdiction who's got a young person from Scotland in Wales it puts them in quite a difficult position if they're maybe 17 and their organs are going to be taken whereas if they're 18 years of age there's a consistency across the UK if this is again about informing the public to make informed choices it's probably easier to apply this consistency if the age limit is the same in Wales as it would be perhaps in Scotland or in the UK that takes this on board respond to that age question I'm thinking it wouldn't cause you a problem would it in terms of 16 or 18 it adds a complexity so as I understand it the law is currently written says was the individual resident in Scotland at the time of the death so you could be resident in Scotland at the time of your death but you might die on a day trip to London and these things do unfortunately happen and then you have inconsistencies in the approach you know we have to train all of our nurses to understand the law in each country because death sadly is no respecter of country boundaries and therefore the more complexity there is the higher the risk of getting it wrong that's the only thing that we would say it's just an operational matter trying to remember all the twiddles in the different laws if they're all different Dennis the other area that we really haven't explored terribly much is this time factor I'm slightly confused because I don't know what the time factor is in terms of the discussion with the family and what the window would be in terms of organs being available for donation because we are aware that this discussion needs to take place and it needs to take place fairly quickly the bill refers to the time frame but we don't have so many hours or days or whatever what is this time frame that they do have for instance if someone has a sudden death on a theatre table the family everyone's going to theatre I suppose has a degree of risk but you can have sudden deaths or unexpected deaths how do we deal with that and what is the time frame we take it away from sudden death and look at what we were speaking about before with the brainstem death and the time frame where there's going to be a series of tests that are carried out and there's also going to be a discussion from a clinician that that person is not going to survive there's then going to be the added discussion of futility that we're going to look at options and one of them would be potentially organ donation with that family and the same in the donation after circulatory death so there will be a planned conversation with a collaborative conversation and that family to take forward the discussions around organ donation the other time frames for that is if the family do say yes is how we actually plan that whole process and that's where timings come in for the families and for the units we could have somebody donating a number of organs all organs have to be offered out and placed across the country so that can take time we have blood tests and things to perform we've spoken already about the safety of transplantation so there are elements within that process that we have to follow that takes time there's also theatres to be set up and there's also the expertise of the surgical teams who will come out and retrieve those organs so that is all within the time frame these are all the discussions in the training that we've had in how we take the families through that whole process and explain to them what that time frame may be looking at 10 to 16 hours from a conversation to get everything set in place before the death could happen for that person particularly in the nation after circulatory death and before organs are retrieved and that is the timings that we speak about in how we take that family forward in those very important discussions and information setting Would we require to have a time frame in legislation or is it so flexible that you wouldn't and maybe not on the face of the bill but maybe in the guidance notes or whatever should we have that specific time frame in order that people are very much aware that it is time restraint that conversations need to happen very quickly we don't have days We don't have days but I think that the time frames can be flexible with the families in how we take the process forward OK Is there any member who hasn't asked any question who wishes to ask a question Richard Lyle Thank you, Cynunia Can I go back and first of all my first question was and I complimented what the work that you're doing so no one's criticising me but can I ask Irene Young and Liz how many hospitals actually do you cover because data shows that the consent rate rises around 33% when specialist nurses for organ donation are involved in the approach but also the same data shows that specialist nurses for organ donation are only involved around 76% of approaches to families so do we actually physically need more of you to have one see nodding heads for specialist nurse in a hospital I don't know how many hospitals you cover but you're 24-7 and you're out of hours and I compliment you on the work that you're doing but I've been interested to know how many hospitals actually you personally both of you do cover At the moment for the service we have 26 and 18 hospitals 26 in Scotland so we cover all the hospitals and all the people who are on call as you say that in the statistics that you quoted there are times when we're not involved that could be dependent on our travel to those hospitals it could be out of hours when we're being called and we're trying to get there and there are some times that these conversations may happen with the clinicians with the families pretty quickly because they have asked a question already there are families who do raise donation and they may have asked that question if you're on route to that hospital and that we will take part in those discussions and we will take forward donation if that's agreeable but it may well be that clinicians have started the process already in some of those cases that you've mentioned where we're not present It would be very hard for you with the greatest respect to if a clinician had a discussion with the family and they've said no they're distressed and all the different things it's very hard for you to come in get them back into the room to re-discuss it would be very difficult and in those situations we have not been involved in many of them where you would go back and speak to the family again they've probably given very good reasons and the clinicians as well we've already spoken about the education of our clinicians the clinicians will also try to explore why the family have any misconceptions and maybe not wanting donation to go forward part of our I'm based in the Royal Infirmary in Edinburgh so part of my role is to go down to the unit every day and say hello how are you basically what's happening in the unit today and by doing that what we're trying to do is to get the clinicians to refer patients to us as early as possible I may not be on call that day but I can start the process for my own call colleague and then make their way through to the hospital and they'll take over from me and carry out the rest of the process overnight and the reason behind us doing that is to make sure that we're cutting the time down as much as possible we're not putting the family through a long drawn out process so that's the idea behind having an embedded snod in each hospital most of us will cover either one hospital or two I'm based, I only cover the Royal because it's quite a big hospital several intensive care units in an emergency medicine department some of my colleagues will cover two of the smaller district general hospitals because there's less potential there sorry, can you just last line I'm going to ask you if we had a specialist nurse in every hospital in Scotland would that raise the organ donation rate yes or no? I don't think we can be certain one of the things that we are testing currently is whether if a nurse engages in approaches more families in a role that's called a designated requester role whether they become more expert and get higher rates of consent the early evidence from that is promising therefore if you put a nurse in every hospital at the moment on average our nurses do 15 approaches a year a designated requester does about 60 if you had a nurse in every hospital 15 to lower and you might actually lower your rate of consent thank you very much there be one in every intensive care unit at the moment there is availability in Scotland that there will be a nurse in every intensive care unit in particularly the big donating hospitals in the district general we have supplementary where somebody else will cover that hospital to intend some purposes that's already happening in practice yes and given that they will only engage with a few families annually what are the other aspects of the role of education communication there's education, there's promotion there's the whole hospital development of the whole hospital approach to look at organ donation throughout that hospital so there's a huge amount going on and the audit we mentioned the audit before every single death which is very important to show that we're not missing anybody is there any other member's question Dennis Robertson I don't know the figures but in terms of donations do we have figures to give us an indication how many donations are under the age of 18 from the paediatric side and the adults are there more the younger age group I can let the committee have the donors broken down by age over the last few years if that would be helpful I don't carry that data in my head for Scotland yeah, thanks do you think that the younger age are a minority no, well the average age of our donors is over 50 yeah, we're in Spain it's over 60 and the majority of their donors and they're doing older for older one caution that's why you're here we use all but about 5% of organs from our donors so what we have is a situation where we don't retrieve an organ from a donor unless we have a transplant unit prepared to implant it mostly when they get the organ and they look at it they go fine and they put it in sometimes they look at it I think that's going to be too risky and so a very small percentage of organs are discarded at the point of before transplantation our discard rate is significantly lower than our Spanish colleagues and we need to be pursuing transplants not donors right yep, that's an intuition wouldn't he leave us with the other one here that we touched on briefly in terms of our day trip to London that is the habitually resident we have had some evidence in written submissions that the continuous six month period was too short when you take into account certain groups, international students, foreign contractors all of that sort of stuff is there any views on that I think a year is safe I think a year is safe just to make sure people have time to find out about the law and be informed and it would also give us consistency with our colleagues in Wales and potentially Northern Ireland who are of course looking at their bill next week lost society was endorsed and a year seems a reasonable period of residency okay just finish on an area of cost and again from your evidence I think we've covered a number of areas where there would be a cost but an outcome of maybe 70 more organs available are people donations but you don't mention the other side of the equation and I don't know whether there is another side of the equation and that increased donations will reduce people on dialysis so how does the committee take your evidence on terms of the issues proper issues about lack of capacity whether we be able to retrieve another 70 all of that given the overall figure in Scotland which was quite surprising so what are the other side of the cost here what are we actually saving as well how does that balance you already save money if you don't put somebody else on to dialysis to replace somebody who has taken off so you actually have to close down your dialysis unit if you get cash releasing savings presumably they're not going on for fun they're not going in for fun but it's the laws of supply and demand are difficult it's a health service I'm afraid indeed I think the other thing that's there are obviously choices about investment in all of this process and if you invest in the things that enable the consent process to change the authorization process to change then you also have choices about whether you also invest in things like the new technologies to perfuse organs which may give us just as many transplants so we're in a situation now where transplant surgeons are developing clever boxes that they can put organs into from the point at which they're removed from the body which effectively replicate the circumstance of the body as closely as possible and which can improve the functioning of the organ so one of the things we're looking at is can you make the untransplantable organ transplantable so there are a whole range of opportunities that the funders are faced with our colleagues in the Scottish Government about what they give us money for whether it be changing consent systems whether it be for new technologies being able to transplant hearts from people who've died after circulatory death which we're in the process of evaluating currently it's about £35,000 just for the organ retrieval in that circumstance but the outcomes look promising so there are some choices to be made and you know what you've proposed because you've identified a number of areas that says this will cost this will cost us money the proxy will cost us money identifying people will cost us money the communications programme will cost us money is there a figure in all of any of that? Not from NHSBT but I believe my colleagues in the Scottish Government have done some work on that. All right, we'll ask them then. London Marson I suppose I'm privileged in the sense that I don't have to worry too much about it I just spend the money, I don't really worry about it but in a sense transplantation is one of the most cost-effective treatments for people in the history of the NHS really and if you give the example of kidney transplantation which is the highest number of transplants in terms of single organ then there is no doubt that after one year a successful transplant is more cost-effective than a year of dialysis benefit continues year on year and in Northern Ireland where they have over the last five years really been very proactive in their renal transplant programme they have now been able to shut down some dialysis not units but time so the twilight time is the worst time for patients to go on dialysis so now for one or two days a week in Belfast they don't need twilight dialysis slots because they have increased their number of transplants on such an extent that fewer dialysis slots are required so it is a highly cost-effective treatment Sally's point is well made where we invest the money to obtain those gains is a question of on-going debate and the novel technologies is an interesting area but it is a highly cost-effective treatment OK Ann-Marie Tigers Thank you Thank you and welcome and I thank again the committee and the members and the witnesses for today's evidence and also I'll put on record my best wishes and good luck to my Welsh colleagues who start kick-off today and also for my Northern Ireland somebody mentioned that earlier we're slightly ahead in Northern Ireland with this system than what we are here really just to say thank you and I applaud the work that you all do and I sincerely applaud you all you're at the front line of it you're the ones with the most knowledge experience I salute you all the bill itself has came around because we do have to look at we need to increase our organ donations we know and you'll know just as well as I do 571 or 72 you can correct me awaiting an organ transplant today we aren't one of the witnesses mentioned earlier about you know we do have a great publicity campaign and yes we do and yes everything that we have done to date has been wonderful it's been great however as the convener mentioned earlier where do we go from here we need to do more we need to be able to do more we need to save more lives three people die daily in the UK we are all aware of that we have to do something different because what we're currently doing is not fit for purpose in a sense we're not reaching the targets that we said we would reach and can I take on before the convener moves me on Sally Johnson about the increase in donations so can I have your view on we have well I have here there's figures deceased donor rates have fell by 7.5% the number of deceased donor transplants fell by 13% and the second quarter figures for this year indicate that there may well be a 16% decrease in deceased donor rates for 2015-16 can I ask for your views on that I'm pleased things have turned round we had our highest ever donor numbers in October we had 143 donors across the UK 365 transplants that's 26 donors per million population that's the level that we are aiming to be at every month by 2020 so that suggests to me that something's right in terms of what we're able to do here as to whether changing legislation will give more impetus to that I'm not in a position to tell could I supplementary on that nope go on you're right to state the 2020 figures they are looking at the Scottish Government has set the target to increase 17.9 per million population in 2012-2013 to 26 per million population by 2020 now you'll be well aware of that figure of what we've just mentioned that will have increased in the past three years this rate has only increased by 0.3 per million persons now if we're looking for an increase of what 17.9 per million per population it's only increased in three years by 0.3 per million we have a new strategy and part of the thing about strategies is that they don't take off like that they take off like that and I think we are beginning to see some of the strategic things that we've put in place begin to bear fruit whether that be designated request as some of the other processes that we've got and that I think is why we had 26 donors per million population for a month, last month but you know there isn't an organ donation system in the world that just steadily increases even Spain goes down and back up again and you just have to keep plugging away new initiatives to change things and to make sure that everything is done perfectly I'm absolutely aware that what we spoke about is not the silver bullet and this isn't the be all end all and will not be a 100% increase just with this legislation however we have seen from international evidence and I don't think we can shy away from the international evidence that we have seen I mean it's not just a couple of years that's been going on for 20, 30, 40 years this evidence is not just yesterday's news I know I think it was probably you, Ms Marston that mentioned it so do you want to comment on that about the international evidence I don't think the international evidence is clear in Spain the opt-out legislation existed far before they saw the increase in organ donor numbers they then introduced practical, logistical and structural changes to the way organ donation happened similar to the way that we've done that since 2008 and that is when their organ donor numbers increased it did not seem to be temporarily related to their legislation Croatia has the second highest donors per many population and they have an opt-in system so I don't think that the legislation in isolation is what makes the difference I think I would tend to disagree with you there because the international evidence has clearly indicated that no legislation will be the silver bullet however this is a means to get an increase in organ transplants and could I also rectify something that I did mention last week convener within the committee and get that on record it was my mistake and I apologise for that last week's evidence I stated that international evidence they see a 15 to 20% increase please excuse my mistake it's actually a 25 to 30% increase potentially so can I just have that on record and I think my last question will be around some of the some of today's conversations was around you know the role of the AIP and where that buck would stop for that decision making but are you aware that currently the law states that the family cannot legally deny organ removal for transplantation if a deceased was on the organ donor register yes we are aware but then you're looking at policy and process and protocol which is widely and generally recognised that the families are consulted and that would not change with this bill may the society then respectfully ask please would you revisit the policy memorandum to try and provide clarity because I think all of us have recognised the importance of good communication so any ambiguity that's such a difficult time there is absolutely no way we would want to see any clinicians any snods, clods whoever is doing that front line task for that to be any more complicated than it certainly is and it wouldn't be changing that role would not be changing so yes thank you very much for your word on that and I will get back to it my other question was the age of consent we have here convener had changes in the age of consent for various things including voting but I take on board what the panel and respect their wishes so may we look at this from the outset this bill is not certainly a tablet of stone it is, I aim for this bill to be workable and for the benefit of all that need it it's not there are possibilities for amendments there's possibilities I want to hear what evidence that the committee I think again the idea of consistency at a time I think our colleagues here said time is of the essence to try and have a clarity and consistency of approach and if other jurisdictions within the UK are going to embark on this path to again have the same age limit is going to promote decision making at this time can I explain where that evidence that why that's within the bill convener that came through some of the evidence that I had taken on the road tripping with the bill and getting some consultation with it that was young people themselves felt that well if they were able to vote now at 16 we're able to do a lot of things at 16 why can't we and a lot of them just now there's the age of 12 but we're concerned with your parents or your guardians and I'm grateful for Rhoda Grant for picking that up the proxy part of that was in the youth parliament that young people sometimes don't have a family member and that leaves them in a difficult position but also you'll be well aware that sometimes families don't agree either aha and that was really just given because people wanted to write an example of that we had a person who was filling out our forms for us for to give evidence and they had said I definitely know my husband I definitely want to denate Morgan's but my husband don't let him decide for me whenever I pass away because that he'll definitely not allow that to happen and she didn't want that to be her wishes so it kind of works both ways and that's why the proxy aspect was in there but also the proxy aspect is there because that is in line with the UK governments that the current it's a nominated person I think it's called just now so it's not any different it would bring us in line with what the UK currently do any response thank you very much to Emma Taggart and all of our panel here this morning I found it very interesting and informative session thank you very very much for your precious time I hope we can reflect some of your views in our subsequent report again we suspend now we get to private session at this time as previously agreed