Neurological care and support: consultation report

Summary of the key themes from our public consultation on a draft national action plan for neurological conditions.

Implementation of the Plan

153. The draft plan noted that there is a need for co-ordinated action across the Neurological Community in order to achieve its vision. It is intended that the Scottish Government will consult members of the Neurological Community on the content of the draft plan to ensure there is wide support for the commitments. It noted,

We will:

1. Consult the Neurological Community on the commitments in this plan.

2. Develop an implementation plan to support delivery of the commitments over a 5-year period.

3. Appoint a National Implementation Lead who will work to develop a national network of Local Implementation Leads in Integration Authorities and NHS Boards to help deliver the plan across Scotland.

4. Invite proposals for testing new models of care and support from Integration Authorities, NHS Boards and third sector organisations.

5. Align the role of the National Advisory Committee for Neurological Conditions, to support the implementation of the National Action Plan.

154. A total of 94 respondents, across all sub-groups, took the opportunity to answer this question, and a number of key themes emerged. To an extent, many of these comments echoed elements of the plan.

155. Some respondents commented generally on the plan and the commitments, and a few noted their support for the plan, its aims and commitments, although a similar number also noted the need for further detail such as what funding and support will be available, or more clarity in timescales or what services should look like.

156. A few respondents noted the plan is too ambitious and needs to be more realistic, or that the commitments will need to be strengthened. One or two respondents were cynical as to whether this will actually be implemented. As at some previous questions, there were requests from a small number of respondents for a list of all neurological conditions.

157. A key theme was on consultation and communication over the plan. A significant number of respondents noted the need to include the views of those living with a neurological condition, their carers or their family members, with some requests for them to be involved in not simply providing feedback but to also be involved in implementation of the plan. A number of these respondents referred specifically to the need to include individuals with ME.

158. A few respondents - mostly third sector organisations - noted the need to include the views of third sector organisations, in the detail of the implementation plan. Small numbers of respondents also made reference to including the views of professionals, decision-makers and purse-holders.

159. Other suggestions relating to communication and consultation, each made by only one or two respondents included;

  • A need to communicate the plan at a workforce level.
  • Holding roadshows or workshops at a local level to look at the different pathways.
  • A need for an awareness-raising exercise or media strategy.

160. Another key theme emerging at this question related to the health and social care workforce. Some respondents referred to the need for sufficient staff or specialised staff in order to meet the aims and commitments. Linked to this, some others referred to the need for training to ensure that staff have the required expertise.

161. A small number of respondents noted the importance of having a National Implementation Lead and Local Implementation Leads.

162. Another key theme related to service provision, with a number of respondents commenting on the need for consistency in services across all areas of Scotland, including the more rural and remote areas; as well as providing appropriate services for all neurological conditions.

163. There was also reference to a need for integrated services and co-operation between different organisations and Health Boards, so that there is a truly multi-disciplinary approach offering full integration in the development of an appropriate workforce.

164. Linked to this, there was also reference to the need for funding and resources, with some respondents referring specifically to the need for specialist centres, or the need for resources for specific neurological conditions such as ME, while other respondents simply noted the need for adequate funding so that all necessary services can be provided in a timely and accessible manner. One Health and Social Care Partnership referred specifically to the need for resources to help support Partnerships to develop local action plans that link with existing strategic plans.

165. The need for timescales for implementation was cited by a few respondents.

166. A small number of respondents also made specific reference to the need for improved IT systems and development of a national digital platform.

167. Another key theme referred to reporting and accountability. Some of these respondents referred to the need for detailed targets and identified milestones, and others noted the need for tools for outcome measurement and assessment so as to ensure the plan when implemented is effective. Overall, there was a perception of a need to ensure that detailed monitoring is undertaken, with regular reporting of success and the need to hold NHS Boards to account.

168. Small numbers of respondents referred to the need for strong leadership to ensure the aspirations of the plan are met, with a couple of respondents referring to the need for ministerial leadership and ownership of the National Action Plan. Allied to this, there were a small number of comments that there will also need to be ownership of the plan across the neurological community including third sector organisations and NHS staff. One third sector organisation noted that there are differences in accountability between national government, NHS Boards and Integrated Authorities and that these will need to be addressed for the plan to be effectively implemented.

169. A few respondents noted the need for the development and sharing of good practice. Two organisations in the NHS / Health sector suggested utilising good practice that already exists and ensuring that existing teams and their expertise are well utilised.

170. Finally, at this question, a number of respondents - mostly individuals - commented on the need for research, with most of them referring specifically
to ME.

171. Question 34 of the draft National Action Plan went on to ask 'What is the most important thing we need to change to improve the NAP?' A total of 86 respondents answered this question.

172. To a large extent, many of the comments made in response to this question echoed those seen at earlier questions. The key themes emerging included the need:

  • For the plan to be realistic and succeed, and have a clear approach to leadership and governance; and professional leadership within and across statutory organisations working closely with third sector partners. There also needs to be clarity over where responsibility sits for delivering each commitment and how progress will be monitored. One third sector organisation noted a need for external scrutiny of standards by Health Improvement Scotland and the Care Inspectorate alongside clear processes for clinical and care governance at a local level to ensure delivery of all the Aims and Commitments.
  • For clear definitions of some of the terms used in the document.
  • For the plan to link into other strategies and policy areas, and have clearer reference to existing clinical guidance and standards. Also to have more clarity on the relationship between Health and Social Care Standards, the new Health Improvement Scotland neurological standards and the Neurological Action Plan.
  • To ensure sufficient and additional funding is set aside.
  • To develop effective targets and milestones, measurement tools for the plan and its outcomes to be robustly monitored and evaluated regularly and consistently.
  • For data collection and research, for example, to understand the prevalence of different neurological conditions or to provide evidence of the services needed across Scotland.
  • For an enhanced workforce to meet demand, with sufficient staff who can provide knowledge, skills and experience across the full range of neurological conditions and across Scotland.
  • For support for individuals with neurological conditions; easy and equitable access to co-ordinated support and care provided by a multi-disciplinary team, and also timely access to the necessary support and reduced waiting times. This support should be offered to individuals with a wide range of neurological conditions, including prisoners and those with Functional Neurological Disorder (FND), ME and MS.
  • For increased awareness and training on neurological conditions, so that those within the workforce are aware of the impact of these conditions. There was also some reference to the need for GPs to have training on these conditions as they are often the first port of call for initial diagnosis.
  • For improved and integrated IT infrastructure and systems so that all necessary professionals can access and share relevant data. One third sector organisation noted the need for more integration and dissemination across specialisms and between tiers of service.
  • For recognition of all neurological conditions as well as recognition of the different contexts and needs of progressive neurological conditions; there was some specific reference to ME and MS.
  • The needs of individuals with ME will not be addressed by this Plan as they were excluded from the two key pieces of work commissioned to underpin the report (the report on the prevalence of neurological conditions and the mapping of neurological services).
  • Clarity over what constitutes good practice.

173. Other comments made by respondents included suggestions for the ParkinsonNet to be referred to in the final Action Plan, and a request for clarity over whether the National Care Framework for Huntingdon's Disease will be used as a template for people with other neurological conditions.

174. The final question of the consultation gave respondents an opportunity to provide any other comments or suggestions, and most comments echoed those seen at previous questions. Some individuals within organisations took the opportunity to provide come background to their organisation to help set their responses in context and some individuals provided information on their lived experience with a neurological condition.

175. Some respondents welcomed the opportunity to respond to this consultation.

In summary:

A number of key themes emerged at this question. These included some comments that while there is support for the Plan, there were concerns that it is too ambitious as it stands and that there needs to be further detail; for example, what funding and support will be available, clarity in timescales and what services would look like.



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