3.1 Within Government
As well as Better Regulation Unit and Health and Social Care Analysis, Health Protection Division had direct contact and discussion with the following divisions and agencies which has informed the development of the proposals:
SG Family and
SG Looked After Children Unit
SG Adults with Incapacity Policy Review
SG Cohesive Communities
NHS Blood and Transplant ( NHSBT)
Scottish National Blood and Transfusion Service ( SNBTS)
NHS National Services Division
NHS Health Scotland
NHS Healthcare Improvement Scotland (Scottish Health Council)
Population Healthcare – Welsh Government
Population Health – UK Government
3.2 Public Consultation
The Scottish Government carried out a public consultation over 14 weeks from 7 December 2016 to 14 March 2017. The consultation sought views on increasing numbers of successful donations in Scotland. The consultation looked at two ways to potentially increase numbers of deceased organ and tissue donors – by seeking to increase numbers of referrals and by seeking to increase the number of times when donation is 'authorised' to proceed. In particular, the consultation looked at the introduction of an opt out system of donation if this can be developed in a way which will do no harm to trust in the NHS or to the safety of transplantation.
Notification of the consultation was sent to 260 stakeholder groups and the consultation was launched by Aileen Campbell MSP, Minister for Public Health and Sport and accompanied by a news release which received wide media coverage in newspapers and broadcast news.
The consultation responses were independently analysed and the analysis was published on 28 June 2017 Analysis of Responses to Consultation on Organ and Tissue Donation and Transplantation
There were a total of 824 responses to the consultation, including a petition with 18,500 signatures in support of moving to an opt out system (which was counted as a single response). A significant number of respondents were individuals (95%).
The consultation responses showed strong support for moving to a soft opt out system from individuals (84%) and overall (82%). The responses from organisations, including those representing health professionals, are more mixed (53% support) but where this is not support, or no view on opt out in principle, there remains support for the system as proposed in the consultation if it is introduced.
3.2.1 Qualitative research
In addition to the public consultation, Focus groups were carried out with young people and people with learning difficulties to understand what they thought about particular elements of the proposals and what should be taken into consideration as they are developed. The focus groups were facilitated by the Scottish Health Council and a summary of each group is below. Link to full report Gathering Views on Organ Donation
Two groups took part. Overall the first group felt organ and tissue donation and transplantation was an important issue and they were in favour of the soft opt out system. They agreed that 16 was an appropriate age to give authorisation to donate; however they felt that it was still important for younger teens to learn about organ donation and have discussions with their parents. It was also thought to be essential that people have the right to change their mind at any time. All participants thought it was a good topic to learn more about and would like to be kept informed through school, social media, adverts and a formal letter informing them (should the soft opt out system go ahead).
The second group also found the topic interesting and important and indeed something young people should have an opinion on and to have that opinion heard. Whilst the general feeling of the group was that the age groups identified in the proposal seemed to be right, some participants thought that "maturity" was more important than age in being able to make such decisions. The group felt that it was important to be able to change your mind and it was equally important that parents should respect the wishes of their children. In relation to updating them with information, it was identified that perhaps the message should continue to be dispersed in a range of ways, including the range of social media used by this age group, structured sessions during school sessions and by using the Young Scot rewards website.
People with learning difficulties
People First worked with the Scottish Health Council to carry out two focus groups. The participants in the first group had an interest in the topic of organ donation and would welcome the opportunity to discuss it in their own group and with their family and friends. They also acknowledged that there needs to be more conversation in general about major health issues and decisions, such as organ donation or blood donating, etc. This should come from the Scottish Government in conjunction with the local NHS health board. They unanimously agreed that any printed media must be in an easy ready format (prepared in consultation with those with learning difficulties). The group also felt that "supported decision making" must be taken into consideration, so that the individuals can make an informed decision, and not feel that their families are taking ownership.
The second group thought it was important that people should have a choice and there should be more done to increase the awareness of donation so families have the conversation and make a choice and it is not left to the bereaved family member. The group thought that it feels slightly 'forced' upon if put in to law. The group thought it was important that information is in a format that is easier to understand, rather than it being assumed that people cannot understand it. The group thought family members or advocates could have a conversation with individuals about donation in a way that is understood, or medical professionals could do the same and add the decision onto medical records. The group suggested lots of ways to communicate the change, including through talking mats and organisations like People First. The group advised against relying on social media alone as some people don't have access, and thought although it might be a good idea, giving information out when people fill in forms on other issues may cause stress. The group thought a 'blanket' letter similar to those about voting in elections would be unhelpful.
3.3 Business consultation
It is not envisaged that the legislation will result in any impacts on businesses.
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