Neurological care and support: consultation report

Vision, Scope and Approach

The Vision

17. The vision laid out in the National Action Plan noted 'Everyone with a neurological condition will be able to access the care and support they need to live well, on their own terms'. Question 1 of the consultation asked 'Do you agree with this overall vision?'

18. As shown in Table 3, almost all respondents who answered this question supported the vision.

Table 3: Q1 Do you agree with this overall vision?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	9		2
Pharmaceutical / manufacturing (2)	2	-	-
Representative organisation (7)	6	-	1
Third sector (24)	22	-	2
Other (3)	3	-	-
Total organisations (49)	44	-	5
Individuals (96)	87	3	6
Total respondents (145)	131	3	11

19. A total of 19 respondents made general comments about the National Action Plan (NAP), most of whom noted their support for the Plan. Very small numbers of respondents also noted:

• A need for appropriate resources to enable implementation of the Plan; as well as a need for appropriate resources to be provided for different neurological conditions.
• Services are currently too fragmented.
• A need for references to Community Pharmacists and Occupational Therapists.
• A need for more detailed information.

20. Only a small number of respondents made specific comments about the Vision. There was a request for inclusion of an ambition to improve our understanding of neurological conditions and for the words 'with support as required' to be incorporated to ensure that individuals who lack mental capacity are included.

21. Within the National Action Plan, the term 'neurological conditions' is used to include a wide range of conditions, disorders and syndromes affecting the brain, spinal cord, nerves and muscles. Question 2 asked, 'Do you agree with the decision to maintain a broad view of neurological conditions rather than include every neurological condition by name in the plan?' As Table 4 shows, a higher number of respondents agreed with this decision than disagreed. The organisation sub-group showing the highest level of disagreement was third sector organisations.

Table 4: Q2 Do you agree with the decision to maintain a broad view of neurological conditions rather than include every neurological condition by name in the plan?

	Number
	Yes, agree	No, disagree	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	6	1	4
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	5	1	1
Third sector (24)	14	7	3
Other (3)	2	1	-
Total organisations (49)	30	10	9
Individuals (96)	55	34	7
Total respondents (145)	85	44	16

22. A number of respondents made comments specific to the scope of the Plan, with some of these welcoming this part of the Plan. That said, some respondents outlined conditions they felt should be specifically referred to and these included MS, ME, dystonia, MND, fibromyalgia and myasthenia gravis, and a small number of respondents also suggested there is a need to define what is (and what is not) included or to illustrate the range of conditions encompassed by the Plan. The key reasoning behind this was that this will ensure all individuals with neurological conditions will be represented or that inclusion of a range of conditions will ensure a consistent approach, reduce barriers and improve equity so that all individuals will be able to access appropriate treatment. A small number of these respondents felt that failure to include a range of specific neurological conditions could lead to generic criteria that would mask their complex needs. One third sector organisation noted that the current approach does not reflect the variety of neurological conditions in terms of their symptoms, the complexity of health and care support required or the way in which these can impact on peoples' lives.

23. A small number of third sector organisations suggested the Plan needs to differentiate between static neuropathies and progressive neurological conditions.

24. A small number of respondents - primarily representative organisations - suggested a need for a more detailed Implementation Plan as this would provide more detail on specific programmes of work for specific conditions.

25. There were also comments that there is a need to work with, and link into, other policy areas such as dementia and mental health.

26. The National Action Plan is focused on adults aged 16 or older, as there is separate work within the Scottish Government considering how best to support children and disabled young people and their families. There are already separate strategies in place for stroke, dementia and learning disabilities so, although these are neurological conditions, they are not specifically considered within the NAP.

27. Question 3 then asked, 'There is separate work by the Scottish Government considering how best to support children and young people with disabilities and their families, so we decided to consider the needs of people who are 16 years and older in the Plan. Do you agree with this decision?' As Table 5 demonstrates, a large majority of respondents across all sub-groups were supportive of this decision. Once again, the largest number of organisations who disagreed with this question was in the third sector.

Table 5: Q3 There is separate work by Scottish Government considering how best to support children and young people with disabilities and their families, so we decided to consider the needs of people who are 16 years and older in the Plan. Do you agree with this decision?

	Number
	Yes, agree	No, disagree	Not answered
Health & Social Care Partnerships (2)	1	1	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	5	-	2
Third sector (24)	14	6	4
Other (3)	2	-	1
Total organisations (49)	31	7	11
Individuals (96)	80	9	7
Total respondents (145)	111	16	18

28. A total of 18 respondents opted to provide commentary in support of their response to question 3. The key theme was that children should be included in the Plan as their exclusion will not address the current disparity in the provision of services. There were also comments that this will result in a disconnect between children and adult services or that there could be duplication across programmes.

29. Some other respondents, while they were supportive of the approach outlined, noted the importance of ensuring a well co-ordinated progression for young people from child to adult services and effective transition for service development and configuration so that young people do not receive a different service and support. A few respondents highlighted the need to ensure co-ordination of planning, policy and services to ensure smooth transitions as well as a need to ensure all neurological conditions have equal access to support and services.

30. The NAP then explained that the Scottish Government commissioned several overlapping pieces of work so as to ensure that people with lived experience and their families and carers were placed at the centre of the Plan. Question 4 asked, 'Developing the National Action Plan involved a range of activities to make sure we identified the right priorities. Do you think we included the most important priorities in the plan?' As shown by Table 6, a large majority of respondents agreed with this question. Once again, it was primarily third sector organisations who disagreed.

Table 6: Q4 Developing the National Action Plan involved a range of activities to make sure we identified the right priorities. Do you think we included the most important priorities in the plan?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	6	2	3
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	5	-	2
Third sector (24)	15	6	3
Other (3)	3	-	-
Total organisations (49)	32	8	9
Individuals (96)	63	19	14
Total respondents (145)	95	27	23

31. A total of 16 respondents chose to provide additional commentary in support of their response at question 4 and outlined a number of other priorities that should be included in the Plan. These included a need for:

• More education on neurological conditions, with some specific reference for the need for GPs to be able to recognise conditions.
• A commitment to identifying and delivering curative treatments.
• Clarification on how organisations would be supported to develop innovative ideas.
• Reference to individuals living in care homes that are not suitable for their needs and the importance of addressing their needs.
• Stronger focus on partnership working and improved pathways to ensure specialist knowledge is shared; with some reference to the need for a pan-neurological condition information resource; greater consideration of service delivery integration and co-ordination between specialities and services.
• Greater priority for mental health services and support.
• Commitment to report on progress on an annual basis.
• Greater focus on premature mortality.
• Acknowledgement of the greater numbers of individuals who will have a neurological condition in the future.
• Greater prominence for social care.
• Greater focus on rehabilitation.
• Greater focus on individuals who are physically able but who have complex cognitive difficulties, which are not immediately evident.
• Gap analysis and needs assessment to identify what level of support and focus will be needed by organisations for each neurological condition.
• Reference to palliative end of life care.

32. The National Action Plan outlined five aims, each of which contained a number of commitments. The following chapters outline responses to each of the Aims and their corresponding commitments.

In summary:

Almost all respondents agreed with the vision; a majority agreed with the scope, and a large majority agreed with the approach. Some respondents wanted to see a list of specific conditions so as to ensure all individuals with neurological conditions are represented and to ensure there is a consistent approach to appropriate services and treatment for all. There were also some requests for further detail.

Some respondents felt that children and young people should be included in the Plan to ensure parity in services across all age groups, and well co-ordinated progression for children and young people to adult services as well as effective transition for service development and configuration.

While a large majority agreed that the most important priorities have been included in the Plan, there were some comments of a need for partnership working, improved pathways and creating higher awareness levels of all neurological conditions.