Neurological care and support: consultation report

Aim C and Commitments 11-13

102. The National Action Plan explained that Healthcare Improvement Scotland have recently revised the 2009 Neurological Services Clinical Standards, which support the development of joined-up health and social care, and reflect the National Health and Social Care Standards. The new standards apply to anyone living with a neurological condition in Scotland and set out the same high level of care and support for all adults regardless of their condition, location, service provider or their individual circumstances. Aim C and commitments 11-13 refer to these standards.

103. A total of 16 respondents provided general comments in relation to this aim and the related commitments. While some of these respondents noted their support for these, they also noted some concerns over available funding, the need for fully trained professionals and an adequate workforce, the need for guidance to ensure that standards are adhered to, and a need to include those with ME in the plan. One third sector organisation noted a need to conduct a comprehensive evidence-based scientifically verifiable epidemiological study of neurological conditions in Scotland. Two individuals also referred to their specific situation and lived experience with a neurological condition.

Aim C

Ensure high standards of effective, person centred, and safe care and support.

104. Respondents were asked to say if they agreed with this aim and the following table demonstrates that no respondents disagreed with this Aim.

Table 19: Q20 Do you agree with Aim C

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	9	-	2
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	6	-	1
Third sector (24)	22	-	2
Other (3)	3	-	-
Total organisations (49)	43	-	6
Individuals (96)	89	-	7
Total respondents (145)	132	-	13

105. A small number of respondents - mostly third sector organisations and individuals - made comments specifically in relation to Aim C. Again, comments tended to echo those seen at earlier questions. While there was general support for this aim, there were also some references to the need for funding, monitoring and scrutiny, and the need for a holistic service with multi-disciplinary teams delivering effective, safe and person-centred care. There were a small number of concerns including how this would be achieved in rural areas, how this would be implemented and the need to address workforce pressures. One third sector organisation requested stronger wording so that this reads 'we will implement …. '

Commitment 11

106. The National Action Plan then went on to note that the Scottish Government has worked with Healthcare Improvement Scotland to support the development of the standards through a shared ethos in bringing the greatest benefit to all people living with neurological conditions, regardless of their diagnosis.

We will promote and support the implementation of the Healthcare Improvement Scotland General Standards for Neurological Care and Support 2019.

107. Respondents were asked to indicate their agreement or otherwise with Commitment 11. As table 20 demonstrates, almost all respondents agreed with this Commitment.

Table 20: Q21 Do you agree or disagree with Commitment 11?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	6	-	1
Third sector (24)	20	1	3
Other (3)	3	-	-
Total organisations (49)	40	1	8
Individuals (96)	81	4	11
Total respondents (145)	121	5	19

108. A total of 15 respondents provided commentary in relation to Commitment 11 and the key comment was support for this, albeit there were some qualifying comments such as requests for more definition in some of the terminology used or the need for a commitment to scrutiny as well as information on how organisations who do not meet the standards will be held to account.

109. Other comments made, each by only one or two respondents included:

• The need to record data for ME in order to ascertain its prevalence and for the standards to be updated to recognise ME and remove Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as recommended treatments.
• Current data is inconsistent as different Health Boards use different approaches.
• HIS standards need to be backed up with governance and leadership, together with a framework for improvement.
• There is a need for condition-specific standards. These should be considered before ratifying the general standards.
• The wording should be changed to include 'we will ensure the implementation …. '

Commitment 12

110. The National Action Plan then explained that through work with NHS Information Services Division (ISD), it had been concluded that it is not currently possible to identify exactly how many people there are in Scotland living with a neurological condition. Commitment 12 noted,

We will work with NHS Information Services Division and others to:

• Understand the gaps in prevalence, and how best to improve the data.
• Enhance capture of already routine collected data.
• Further develop systems and processes that support service planning and workforce development based on this information.
• Explore the feasibility of developing a national reporting framework that includes key performance indicators for neurological care and support and measures improvements in care and support.
• Explore the feasibility of developing effective measures of experience and outcome of person centred care and support, for people with neurological conditions.

111. Respondents were asked to indicate their agreement or otherwise with Commitment 12 and almost all respondents agreed; only three individuals disagreed.

Table 21: Q22 Do you agree or disagree with Commitment 12?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	6	-	1
Third sector (24)	22	-	2
Other (3)	3	-	-
Total organisations (49)	42	-	7
Individuals (96)	85	3	8
Total respondents (145)	127	3	15

112. A total of 34 respondents provided commentary in relation to Commitment 12 with a number of comments in support of this commitment. These comments included the importance of gathering high quality population level data, the need to support research and the need for the development of meaningful outcome measures with measurement tools or standards and a reporting framework that allow for the capacity to have comparisons between different organisations.

113. The key comment, across all sub-groups, was support for this, albeit there were again qualifying comments. These qualifying comments included the need for:

• Robust scrutiny and a commitment to review and assess performance against the standards so as to ensure accountability.
• Baselines to be set and areas for improvement identified.
• The need for KPIs which are easily measurable to provide useful data.
• Guidance on pathways of how to access and use information at a local level to influence the development of services.

114. A range of other comments were made, each by small numbers of respondents. These included reference to the need to record the numbers of individuals with ME, the need to refer to specific conditions by name, and the need for electronic health records to be robust and person centred to enable the collection of data.

115. A small number of respondents referred to other links or developmental work being undertaken by different organisations. These included reference to the Personal Outcomes Network and the developmental work being undertaken and Cancer Registry work.

116. A small number of respondents also noted a need for references to palliative care, the need for qualitative data as well as quantitative data, and reference to psychological function.

117. A similar number of respondents also referred to the need to strengthen this commitment so that effective measures will be implemented.

Commitment 13

118. The National Action Plan then noted that health and social care and support need to be effective and a need to learn from user feedback and service reviews, participation in development and improvement activities, a willingness to consider new paradigms and apply new findings from research. Commitment 13 noted,

We will support the neurological research agenda, promoting the work of the Chief Scientist Office and the Scottish Neuro-progressive and Dementia Research Network, and opportunities for people with neurological conditions to become involved in research trials; highlighting the need for further qualitative research on the impact of living with a neurological condition and on the identification of outcome measures that are meaningful to people who use care and support services that could be used across the Neurological Community.

• Explore the feasibility of developing effective measures of experience and outcome of person centred care and support, for people with neurological conditions.

119. Respondents were then asked to indicate their agreement with Commitment 13. Once again, there was almost universal agreement, and only two respondents disagreed with this Commitment.

Table 22: Q23 Do you agree or disagree with Commitment 13?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	6	-	1
Third sector (24)	21	1	2
Other (3)	3	-	-
Total organisations (49)	41	1	7
Individuals (96)	85	1	10
Total respondents (145)	126	2	17

120. A total of 22 respondents provided commentary in relation to Commitment 13. As with the previous commitments, the key comment was support for this commitment and acknowledgment of the need for research and clinical trials. A small number of respondents commented on the importance of including third sector organisations as many are currently key contributors to research; others noted the importance of including those who live with a neurological condition and who have multiple and complex needs.

121. A few individuals commented on the importance of having research trials to ascertain the causation of ME.

122. Other comments, each made by only one or two respondents included a need:

• For referral guidelines.
• To ensure this informs development and improvement in services.
• To conduct research that considers the roles and contributions of all team members.

123. A third sector organisation suggested inclusion of the wording 'improve equitable and timely access to care and support across Scotland'.

In summary:

All respondents supported Aim C; almost all supported Commitments 11-13. Once again, there were references to the need for funding, monitoring and scrutiny, and the need for a holistic service with multi-disciplinary teams delivering effective, safe and person centred care.

Commitment 11: there were some requests for more definition in some of the terminology used and the need for commitment to scrutiny and accountability.

Commitment 12: there were calls for robust scrutiny as well as a commitment to review and assess performance so as to ensure accountability, along with requests for key performance indicators (KPIs) that are easily measurable. There were also requests for guidance on pathways on how to access and use information at a local level to influence the development of services.

Commitment 13: there were comments on the need to include third sector organisation as many currently contribute to research.