Neurological care and support: consultation report

Introduction

Background

1. The Scottish Government recognises the need to support improvements in healthcare for everyone and wants to ensure that people living with neurological conditions have access to the best possible care and support. The National Advisory Committee for Neurological Conditions (NACNC) was established in 2016 to drive improvements in the care, treatment and support available for people living with neurological conditions.

2. Subsequent to this, the Scottish Government and NACNC developed a draft National Action Plan on Neurological Conditions, setting out a vision for driving improvement in the care, treatment and support available to people - and their carers - living with neurological conditions. The Plan's vision is that everyone with a neurological condition will be able to live independently with care and support as needed.

3. On 13 November 2018 the Scottish Government published its National Action Plan on Neurological Conditions (draft for consultation), setting out a five-year plan with a vision that everyone with a neurological condition in Scotland is able to access the care and support they need to live independently, on their own terms. This is focused on adults aged 16+ and there is separate work being conducted, which considers how best to support disabled children and young people and their families. There are separate strategies already in place for stroke, dementia and learning disabilities, so these are not specifically considered within the National Action Plan (NAP).

4. The NAP defines 'neurological conditions' to include a wide range of conditions, disorders and syndromes affecting the brain, spinal cord, nerves and muscles.

5. The consultation opened on 13 November 2018 and closed on 8 February 2019.

Respondent Profile

6. In total, there were 145 responses to the consultation, of which 49 were from organisations and 96 from individuals.

7. Respondents were assigned to respondent groupings in order to enable analysis of any differences or commonalities across or within the various different types of organisations and individuals that responded.

8. A list of all those organisations that submitted a response to the consultation and agreed to have their name published is included in Appendix 1.

Table 2: Respondent Groups

9. As Table 2 shows, the two largest organisation sub-groups were third sector organisations and those in the NHS / Health sector.

Methodology

10. Responses to the consultation were submitted using the Scottish Government consultation platform Citizen Space, or by email or hard copy.

11. It should be borne in mind that the number responding at each question is not always the same as the number presented in the respondent group table. This is because not all respondents addressed all questions. This report indicates the number of respondents who commented at each question.

12. Some of the consultation questions contained closed, tick-boxes with specific options to choose from. Where respondents did not follow the questions but mentioned clearly within their text that they supported one of the options, these have been included in the relevant counts.

13. In undertaking analysis of responses to this consultation, the researchers took into account the full range and nature of views provided by respondents, while ensuring that responses from individuals were balanced against responses from different types and sizes of organisation, some of which were representing thousands of individuals. The report summarises the main themes and issues emerging and reflects the full range of views submitted.

14. The researchers examined all comments made by respondents and noted the range of issues mentioned in responses, including reasons for opinions, specific examples or explanations, alternative suggestions or other comments. Grouping these issues together into similar themes allowed the researchers to identify whether any particular theme was specific to any particular respondent group or groups.

15. When considering group differences however, it must also be recognised that where a specific opinion has been identified in relation to a particular group or groups, this does not indicate that other groups did not share this opinion, but rather that they simply did not comment on that particular point.

16. While the consultation gave all who wished to comment an opportunity to do so, given the self-selecting nature of this type of exercise, any figures quoted here cannot be extrapolated to a wider population outwith the respondent sample.