Neurological care and support: consultation report

Aim B and Commitments 4-10

57. The National Action Plan then noted that the current model of primary, secondary and tertiary care works well for some people with neurological conditions, who are able to be referred to specialist teams, and can benefit from new therapies and medicines. However, for some individuals the current structure creates barriers to people accessing care and support when and where they need it, whether due to waiting times for appointments, the need to travel long distances to attend a specialist neurology clinic, or differences between referral and prioritisation criteria for housing adaptation, respite care, and provision of specialist, personalised equipment.

Aim B

Improve the provision of co-ordinated health and social care and support for people with neurological conditions.

58. In the first instance, respondents were asked whether they agreed with Aim B. As the following table shows, all bar one individual agreed with Aim B.

Table 11: Q11 Do you agree with Aim B?

	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)	21	-	3
Other (3)	3	-	-
Total organisations (49)	42	-	7
Individuals (96)	91	1	4
Total respondents (145)	133	1	11

59. A total of 75 respondents, across all sub-groups, opted to provide a response to Qs 11-19 in relation to Aim B and Commitments 4-10. Some of these provided general comments, while others referenced the Aim or a specific Commitment.

60. Only a small number of respondents opted to provide any comments about Aim B. Most welcomed this aim, although there were some qualifying comments in terms of the need to ensure there is a commitment from all stakeholders and providers to work together so there are joined up services across Scotland, offering consistency in care.

61. There were a few comments on the need for this aim to be more ambitious or that the wording is too vague. One third sector organisation noted the need for more accurate prevalence data given the role this plays in service planning.

62. A total of 30 respondents opted to provide general comments in relation to these Commitments. A key theme was support for the Commitments although, once again, there were some qualifying comments. These included queries on how success will be measured, and on how parity will be achieved across all the NHS Boards, as well as the need for funding as the NHS is overburdened and under-resourced. An HSCP welcomed the links to other strategies and their application to individuals with neurological conditions.

63. Another key theme which emerged was the need for funding to be able to achieve these commitments, with one NHS respondent noting that this should not be at the expense of existing primary care and acute sector services. This theme was cited by NHS / Health Boards, third sector organisations and individuals.

64. Other themes noted by small numbers of respondents included:

• A need for clear signposted pathways to access information, care and support. Two third sector organisations also commented that access to care at present is too inconsistent.
• A need for more education, specialisation and understanding of neurological conditions, with some specific reference to increasing knowledge for GPs, with some noting the need for increased knowledge of ME specifically.
• A need for specialist roles for specific conditions.
• A need to ensure individuals with neurological conditions can have access to a wide range of services such as therapeutic services, preventative therapies and so on.
• Requests for more information or detail such as how different services will be integrated to offer a high quality of care to individuals with neurological conditions; or more clear definition for some of the terminology used.

Commitment 4

We will work to ensure legislation, policy and guidance recognises the complex needs of those living with disabilities due to neurological conditions, and those of their carers. This should enable Integration Authorities - taking account of local accountability and priorities - to reduce inequalities and variation in the provision of care and support services, prioritisation of referrals, respite care and provision of bespoke equipment.

65. The next question asked respondents to provide their agreement or disagreement with Commitment 4. As the following table demonstrates, almost all respondents agreed with this Commitment.

Table 12: Q12 Do you agree or disagree with Commitment 4?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	-	-	2
Representative organisation (7)	6	-	1
Third sector (24)	20	1	3
Other (3)	3	-	-
Total organisations (49)	39	1	9
Individuals (96)	86	2	8
Total respondents (145)	125	3	17

66. A total of 24 respondents opted to provide commentary in relation to Commitment 4, with a key theme being support for the commitment, although again there were a number of qualifying comments. There were references to the need for funding, a need for guidance for Integrated Authorities and Health and Social Care Partnerships and a need to review eligibility criteria.

67. Another key comment - primarily from individuals - was the need for access to all tiers of support services for individuals with ME (Myalgic Encephalomyelitis).

68. Other comments raised by only one or two individuals included:

• Queries over whether there will be any reviews to ensure inequalities are reduced.
• Queries over whether there will be a reporting and governance structure.
• A need for guidance to be provided to Integrated Authorities given their lack of experience with neurological conditions and to Health and Social Care Partnerships. That said, one third sector organisation noted that guidance can be interpreted in different ways or simply ignored.
• A need for stronger wording in the commitment that will reflect the narrative constructed in Aim B. One third sector organisation suggested inclusion of the words 'recognises' and 'strives to meet'. An individual wanted to see the words 'We will create legislation …. ' and 'This will enable integration authorities ….'. A third sector organisation felt that this Commitment was non-specific and should outline the actions that will be taken forward to reduce variation in the quality of care and health inequalities.
• A need for services to work together and remove barriers to integrated service provision and support.
• A need for improved communication for all services, particularly at times of transition.
• A need to refer to technological solutions at this commitment.
• A separate commitment for residential care to explore this issue further; as well as reference to the differences of younger adults moving to care homes.

Commitment 5

We will work with key partners such as the Disabled Children and Young Peoples Advisory Group and other stakeholders to develop policies and procedures for good transitions for people living with neurological conditions.

69. The draft National Action Plan noted that that some individuals experience a lack of joined up care. The next question asked respondents to provide their agreement or disagreement with Commitment 5. As the following table demonstrates, almost all respondents agreed with this Commitment. Only three individuals disagreed.

Table 13: Q13 Do you agree or disagree with Commitment 5?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	7	-	4
Pharmaceutical / manufacturing (2)	-	-	2
Representative organisation (7)	6	-	1
Third sector (24)	22	-	2
Other (3)	2	-	1
Total organisations (49)	39	-	10
Individuals (96)	86	3	7
Total respondents (145)	125	3	17

70. A total of 16 respondents opted to provide commentary in relation to Commitment 5. Once again, a key theme was support for having a focus on transition, although again there were a number of qualifying comments.

71. A key theme was concerns over the effectiveness of transition from Children and Young People Services to Adult Services, with some comments on the need to plan for transitioning very early and / or offering gradual transition. Moreover, it was noted that Adult Services are not as effective or widespread as those for Children and Young People (CYP) and for a need to improve Adult Services so they are in line with those offered to CYP. One individual pointed out that a neurological condition may impact on a child's development together with their potential for independence and that transition should be allowed to occur at an older age.

72. A small number of respondents felt the National Action Plan should include individuals of all ages.

73. Other issues raised by one or two respondents included:

• A need for more detail in this commitment, with specific reference to the complex needs of children and the inclusion of education to increase awareness of neurological conditions.
• Age-appropriate care provision is lacking in many areas.
• The importance of communication, particularly during the transition period, and the need to work with the young person, their carer and a range of stakeholders and services. One third sector organisation suggested reference to the Scottish Transitions Forum about transition planning.
• A need to include palliative considerations.

74. One third sector organisation suggested some alternative wording so that the commitment refers to 'We will work with the third sector ….. and others to support local and national reform'.

Commitment 6

75. The draft National Action Plan noted the value of third sector organisations as key partners in developing, delivering and trialling new services and look to actively support them in creating a sustainable environment, particularly in areas where these organisations may be best placed to deliver services and support.

We will work with COSLA; local partners in social services, the wider health and social care landscape and in housing; communities; people with care needs and carers; and others to support local reform of adult social care. We are currently developing a national programme for this work together, which will include publishing a refreshed implementation plan for self-directed support. We will also look to actively support third sector organisations as key partners by striving to create a sustainable environment for the care and support they provide.

76. The next question asked respondents to provide their agreement or disagreement with Commitment 6. As the following table shows, almost all respondents agreed with this Commitment.

Table 14: Q14 Do you agree or disagree with Commitment 6?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	-	-	2
Representative organisation (7)	6	-	1
Third sector (24)	21	1	2
Other (3)	2	-	1
Total organisations (49)	39	1	9
Individuals (96)	85	2	9
Total respondents (145)	124	3	18

77. A total of 27 respondents opted to provide commentary in relation to Commitment 6. The key theme was support for this Commitment, although again there were a number of qualifying comments. The key qualifying comment was of the need to include a broad range of stakeholders, organisations and individuals so as to improve services available. The primary emphasis was on inclusion of third sector organisations having an active role as key partners, rather than simply as providing a service, as these organisations have a great deal of specialist expertise in neurological conditions that should be used.

78. Another key theme referred to the provision of a broad range of services for all neurological conditions and the need to ensure they can be quickly accessed; with one respondent pointing to the need for information sharing across the NHS to improve upon service provision and reduce inequality of care.

79. Another key theme - mentioned by third sector organisations - was in relation to self-directed support (SDS), with comments that there has been inconsistent implementation across local authorities, that individuals need more control over their SDS budgets to be able to access specialist support and that most social care is not provided via SDS because of the choice allowed in personal budgets.

80. Once again, there were some references to the need for increased budgets and requests for further clarity or information.

81. A third sector organisation requested information on the timescale for this work and clarity on what this would mean in practice.

Commitment 7

82. The draft Plan then went on to note the need to harness digital technology as a means of improving communication and overall care for people with neurological conditions.

We will support the use of technology and the exchange of digital information between people with neurological conditions and those who provide care and support, and within and between Integration Authorities and Boards, through the extension of the national initiatives described above.

83. Respondents were then asked to indicate their agreement or otherwise with Commitment 7; and almost all respondents noted their agreement.

Table 15: Do you agree or disagree with Commitment 7?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	7	-	4
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	6	-	1
Third sector (24)	21	-	3
Other (3)	3	-	-
Total organisations (49)	40	-	9
Individuals (96)	88	1	7
Total respondents (145)	128	1	16

84. A total of 18 respondents opted to provide commentary in relation to Commitment 7. Again, most of these respondents noted their support for this Commitment, although again there were a number of qualifying comments.

85. The key qualifying comment was in relation to the use of technology and the need to ensure that it is used to improve services to individuals with neurological conditions. There was also some reference to the need for better use of modern technologies, with support during diagnosis and support for individuals with mental health issues being cited as times when technology could be used.

86. There were also a small number of comments on the need to improve the existing IT infrastructure and its interoperability so that all systems can communicate with each other. In this way, it should be possible to have integrated services that are intelligence-led and support the provision of seamless services.

87. A small number of respondents also noted a need for a degree of caution so that there is not an over-reliance on technology as some individuals will need access to non-digital support. Allied to this, there were some suggestions that services cannot be 'digital by default' as some impairments can create difficulties in using technology. Although digital technologies can help to support people to remain connected with video consultations, social media, social prescribing and access to social groups, there was some concern that an over-reliance on technology could lead to an increase in social isolation for some individuals with neurological conditions.

Commitment 8

88. The draft Plan outlined that some individuals noted the need to share information between members of care teams, and the importance of anticipatory care plans for some people with neurological conditions, and that an anticipatory care planning approach is now being embedded across all areas of work in Healthcare Improvement Scotland and the Living Well in Communities Programme.

We will work with Healthcare Improvement Scotland to promote the development of anticipatory care planning approach by NHS Boards and Integration Authorities, to ensure these are widely available to people with neurological conditions.

89. Respondents were then asked to indicate their agreement or otherwise with Commitment 8; and almost all agreed with this Commitment.

Table 16: Q16 Do you agree or disagree with Commitment 8?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	8	-	3
Pharmaceutical / manufacturing (2)	-	-	2
Representative organisation (7)	6	-	1
Third sector (24)	20	2	2
Other (3)	3	-	-
Total organisations (49)	39	2	8
Individuals (96)	85	2	9
Total respondents (145)	124	4	17

90. A total of 21 respondents opted to provide commentary in relation to Commitment 8. Some of these respondents noted their support for this Commitment, although again there were a number of qualifying comments, with references to the need for adequate and sustained funding, that care professionals need to be properly trained and offer a flexible service.

91. There were some queries on how health professionals would work together and what mixture of expertise, skills and knowledge would be needed so as to provide support in an integrated way, along with references to the need for good communication channels between neurological services and mental health services.

92. One NHS / Health sector organisation noted their concern that the wording of Commitment 8 could raise expectations of service delivery where there are not the resources to back this up.

93. Again there were references to the need:

• To ensure that a range of professionals provide input to any arrangements.
• For speed and accuracy in diagnosis and the implementation of individual plans.
• For this to be informed by the experience of individuals with neurological conditions in trying to access health services.
• For a greater focus on future care needs.
• To consider care at home as well as access to specialist services.
• To learn from current good practice.
• For progress to be assessed in relation to anticipatory care planning during organisational reviews of compliance with national neurological standards.

Commitment 9

94. It was noted that many people with neurological conditions experience deterioration in their condition over time and services will need to develop more proactive approaches to offering information, care, support and rehabilitation to people that enables them to maintain their independence, health and wellbeing. The draft Plan proposed to test projects that assess and support people with common neurological symptoms.

We will support Integration Authorities to improve services and support for people with neurological conditions, with a commitment to evaluation and testing of generic / neurology community based multi-disciplinary team models and testing of innovative ways of delivering health and social care to people with neurological conditions, including new roles and new arrangements for co-ordinating care and support.

We will work with Healthcare Improvement Scotland's Improvement Hub to review neurological rehabilitation care and support across Scotland, identifying aspects of good practice and integrated models of care.

95. Respondents were then asked to indicate their agreement or otherwise with Commitment 9. Once again, almost all respondents agreed with this Commitment.

Table 17: Q17 Do you agree or disagree with Commitment 9?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	7	-	4
Pharmaceutical / manufacturing (2)	-	-	2
Representative organisation (7)	6	-	1
Third sector (24)	21	1	2
Other (3)	2	-	1
Total organisations (49)	38	1	10
Individuals (96)	87	1	8
Total respondents (145)	125	2	18

96. A total of 21 respondents opted to provide commentary in relation to Commitment 9. Again, there were high levels of support for this commitment, although there were also references to the need to ensure the involvement of third sector organisations and individuals with neurological conditions to ensure that the necessary specialist skills exist within multi-disciplinary teams.

97. There were also a small number of comments of a need for models that can be adapted for specific needs such as ME and access to condition-specific specialists, with one NHS / Health organisation cautioning that there should not be a dilution of specialist condition-specific expertise.

98. A few respondents requested further detail such as which health professionals would constitute these multi-disciplinary teams and how they would operate.

Commitment 10

99. The draft Plan noted there is also potential to explore whether existing community based models of care and support such as those used in some specialist neurological services, acquired brain injury, stroke and dementia could be enhanced and extended to those with other neurological conditions.

We will work with the Neurological Alliance of Scotland, and other stakeholders to explore the potential of National Care Frameworks - such as that used by the Scottish Huntingdon's Association - and how these can inform neurological care.

100. Finally, in relation to Aim B, respondents were asked to indicate their agreement or otherwise with Commitment 10. As table 18 demonstrates, only one respondent - an individual - disagreed with this Commitment.

Table 18: Q18 Do you agree or disagree with Commitment 10?

	Number
	Yes	No	Not answered
Health & Social Care Partnerships (2)	2	-	-
NHS / Health (11)	7	-	4
Pharmaceutical / manufacturing (2)	1	-	1
Representative organisation (7)	6	-	1
Third sector (24)	22	-	2
Other (3)	3	-	-
Total organisations (49)	41	-	8
Individuals (96)	86	1	9
Total respondents (145)	127	1	17

101. Only 8 respondents provided commentary in relation to Commitment 10. The key theme was a need to work with third sector organisations to make use of their specialist expertise and advice.

In summary:

Almost all respondents were supportive of Aim B and Commitments 4-10. Some respondents commented on the need to ensure there is commitment from all stakeholders and providers to work together to ensure services are joined up across Scotland, offering consistency of care to all individuals with neurological conditions. Across the Aim and Commitments, there were calls for funding, for the provision of good practice and queries on how success will be measured.

Commitment 4: there were requests for funding and guidance for Integrated Authorities and Health and Social Care Partnerships, as well as a need to review eligibility criteria.

Commitment 5: there were again concerns over the effectiveness of transition from Children and Young People Services to Adult Services with some respondents suggesting that the National Action Plan should include individuals of all ages.

Commitment 6: respondents focused on the need to include a broad range of stakeholders, organisations and individuals so as to improve available services. There was also a focus on ensuring third sector organisations have an active role as key partners so as to make use of their expertise and experience of neurological conditions. There were also some concerns that self-directed support (SDS) has been implemented inconsistently across local authorities and that individuals with neurological conditions are unable to access some services as they are not included within SDS parameters.

Commitment 7: while there was broad agreement on the need to use technology to improve services, there was reference to the need to make better use of advancing technologies and improve the existing IT infrastructure and its operability so that all systems can communicate with each other. It was felt that this would allow for the delivery of fully integrated services that are intelligence-led and support the provision of seamless and preventative services.

Commitment 8: Again, there was reference to a need for adequate and sustained funding as well as fully trained care professionals who can offer a flexible service. There were some queries as to the mixture of expertise, skills and knowledge that would be needed to provide support in an integrated manner.

Commitment 9: There was reference to the need to include third sector organisations and individuals with neurological conditions so as to ensure the necessary specialist skills exist within multi-disciplinary teams.

Commitment 10: The key theme was of a need to work with third sector organisations to make use of their specialist expertise and advice.