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LEGISLATION RELATING TO ORGAN AND TISSUE DONATION AND TRANSPLANTATION: ANALYSIS OF CONSULTATION RESPONSES

CHAPTER 2: THE CONSULTATION PROCESS

TIMING OF CONSULTATION

The consultation became "live" on 18 March 2004 and closed officially on 11 June 2004 (although a few responses were received after this date and have been included in this analysis). Staff in the Health Planning and Quality Division of the Scottish Executive's Health Department supported the exercise.

NATURE OF CONSULTATION

The consultation paper was in the form of a 17 page document divided into 3 sections. The first part dealt with transplantation from people who have died, the second with transplantation from those who are still alive and the third concerned tissue banking. Sixteen issues were highlighted as those on which views were particularly welcome although consultees were also invited to provide their views on any other aspects of the proposed legislation.

DISTRIBUTION AND ADVERTISING OF CONSULTATION DOCUMENT

To launch the consultation over 100 copies of the consultation paper were distributed to a wide range of people and organisations in the public, private and voluntary sectors. ⁴ Further copies were sent out on request. Consultees were invited to share the invitation to comment with others and the consultation was advertised on the Scottish Executive website.

The scale of the consultation was wide in terms of distribution to stakeholders, but modest in terms of the number of responses received. Consultees included individuals and organisations in the public, private and voluntary sectors.

WHO WERE THE RESPONDENTS?

The full list of the 62 respondents is documented in Annex 1. Respondents could be grouped into broad categories as shown in Table 1 below.

Although the consultation attracted only 62 responses, the respondents represented 8 different consultee sectors. The largest group of respondents (42%) comprised individual respondents - a mix of members of the public providing lay views and other individuals who could provide a perspective based on their current or previous professional experience of the issues.

Gaps in Respondent Type

Despite relatively low numbers of responses to the consultation (compared with other government consultations), almost all of the categories of consultees were represented amongst the respondents. In particular the "NHS/Medical Body" and "Educational Body" groups were very well represented. As has emerged in other consultations, one noticeable gap comprised the views of representative minority ethnic organisations. In view of the particular issues under consideration, it may also have been useful for the consultation to have sought even more lay response, with young people in particular and older representative bodies perhaps proactively encouraged to provide comment.

Naming Respondents

The convention adopted for this consultation has been to preserve anonymity of individual respondents and organisations by attributing their comments and quotes to their unique reference number combined with an abbreviation to represent the grouped respondent category to which they fitted. In this way, individual requests for anonymity are met and a further depth is added to the analysis by providing some contextual information about the respondent type. The terms used to describe the different category of respondent are as follows:

NATURE OF RESPONSES

The structure of the consultation document provided a strong steer in promoting a consistency in form of response. Questions raised were interspersed with relevant text and respondents tended to follow their order and focus. Responses tended to be short with many examples of one word "answers" or very brief comments addressing the consultation questions. The general mood of responses was one of support for the efforts to update legislation, raise the profile of organ and tissue donation and transplantation, and by doing so encourage higher levels of practice. Some of the responses contained both comments on the specific questions raised and relatively detailed points concerning the consultation drafting.

REFLECTIONS ON THE CONSULTATION PROCESS

The Research View

The consultation attracted a relatively small volume of responses but represented a wide range of respondent categories. Responses tended to follow closely the topics raised with any additional comments focusing largely on detailed drafting points. A number of the questions posed had several elements to them and have been broken down in the analysis into each aspect. On occasions, it was evident that the complexity of a question may have confused some respondents with a few responses appearing to address a slightly different issue to the one raised. This is noted in the analysis of responses as appropriate.

The Respondents' View

Several respondents from a range of different respondent categories commented on the consultation exercise. A selection of their comments follows:

" It is of concern that organ donation levels are not higher and obviously an initiative such as this which aims to clarify and simplify the process of donation and retrieval is to be applauded" (5 NHS/Med)

" the layout is logical and easy to follow and the tone and content of the paper is excellent; it is a difficult subject which is dealt with in a considered and thoughtful manner" (19 Educ)

" very clear and mostly straightforward" (31 Prof Rep)

" overall we find the paper admirably clear" (44 Acad)

However, a few respondents, noticeably amongst the individual respondent sector, highlighted difficulties they had experienced with some of the questions. Typical comments included:

" some of the questions posed ask more than one question, this is not helpful - I suggest one question at a time for future consultation papers" (1 Indiv)

Some questions were, " very awkward to answer, since each case involves its own special problems" (12 Indiv)

However, these comments contrasted with others such as:

" ..members commented that they found the paper easy to read and considered the format of asking for responses to questions very helpful" (20 Pub Rep)

Finally, one respondent called for an extension to the consultation period in order to:

" make a point of asking Scottish people and those who live in Scotland who have actually been through the current transplant process what they think of the new Scottish legislative process" (42 Indiv)

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