Neurological care and support: consultation report

Aims A and Commitments 1-3

33. Initial discussions showed that individuals wanted the National Action Plan to focus on personal outcomes and for them to be partners in their care and support. Data from the Lived Experience^[1] showed that while some people may feel listened to, others perceived a lack of understanding on the part of clinicians, practitioners and other staff.

Aim A

Ensure people with neurological conditions and their carers are partners in their care and support.

34. Respondents were asked whether they agreed with Aim A. As the following table shows that the vast majority of those answering this question agreed with Aim A.

Table 7: Q6 Do you agreed with Aim A?

	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)	85	3	8
Total respondents (145)	128	3	14

35. A total of 59 respondents, across all sub-groups, opted to provide a response to Qs 6-10 in relation to Aim A and Commitments 1-3. Some of these provided general comments, while others referenced the Aim or a specific Commitment. The following paragraphs outline general comments.

36. The key theme emerging from a few respondents who made general points was that the Aim and Commitments are commendable but, while these look good in theory, there is a need for follow through in practice. A small number of respondents felt the language used was rather vague. A few respondents also outlined a number of conditions they felt should be included in the A to Z list of common illnesses and conditions; these included Mysathenia Gravis, ME, Dysautonomia, Small Fibre Neuropathy and EDS.

37. The key comment in relation to Aim A, albeit only made by a small number of respondents was support for this Aim, with comments that there is a need to include people with neurological conditions in their care and support or that they should be central to decision making. One third sector organisation noted that there needs to be a focus on the rights of people with neurological conditions in line with commitments given in 'A Fairer Scotland for Disabled People'. Other issues raised by very small numbers of respondents included a need:

• For independent trained advocacy to ensure all views are well represented.
• To consider guardianship and incapacity.
• For health and social care workers to have condition specific knowledge and to work closely with organisations in the third sector.

Commitment 1

We will support the development of shared decision making and personalised models of care and support for people with neurological conditions and their carers, including self-management support where appropriate in all services' and work with the Health and Social Care Alliance to identify shared learning from projects funded through the Self-Management Fund.

38. Question 7 asked if respondents agreed or disagreed with this Commitment and the following table shows that almost all answering this question agreed with this commitment. The only disagreement came from two third sector organisations and three individuals.

Table 8: Q7 Do you agree or disagree with Commitment 1

	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)	19	2	3
Other (3)	3	-	-
Total organisations (49)	37	2	10
Individuals (96)	85	3	8
Total respondents (145)	122	5	18

39. A total of 27 respondents opted to provide commentary in relation to Commitment 1; support came from all sub-groups. The key theme emerging, albeit by a relatively small number of respondents, was welcome for this Commitment, with comments such as the importance of ensuring that shared decision making is at the centre of care or the need to involve carers. A small number of these respondents made qualifying comments including a need to provide a definition of self-management or that not all individuals with neurological conditions will have an ability to self-manage.

40. A few respondents focused on services for individuals with neurological conditions, with comments such as a need for the specialist workforce to be expanded, that access to specialist staff can be difficult, that there is a lack of services at present or that there is a lack of people with the appropriate knowledge to understand neurological conditions and invisible impairments. These comments came primarily from organisations within the third sector. Allied to this point, a small number of respondents noted that it can be difficult to recruit and retain care workers and that financial resources need to be improved in order to offer the services that are required by individuals with neurological conditions.

41. While a small number of respondents also noted their support for the involvement of individuals with neurological conditions or their carers, a small number also noted concerns that this commitment places an onus on the individual or their carer to identify their own needs and access the necessary services and support.

42. Some respondents commented on the issue of self-management, with a small number noting that the concept of self-management will not work for individuals with rapidly progressing conditions. Others referred specifically to the Self-Management Fund and felt this is limited in terms of the projects it can support, that some of the projects it supports are too short-term, or that it is limited in the change that it is able to deliver and that some services offered under this are not specific to some neurological conditions.

43. A small number of organisations in the third sector referred to the need for partnership working across the health service in the provision of support.

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

• The need to reach individuals who may not identify as a carer.
• The need to conduct an annual review to ascertain what changes have been brought about and to identify any issues that need to be addressed.
• Requirements for further information, for example, how the Scottish Government would make shared decision making and personalised models of care and support a reality.
• A need to use technology to help meet this commitment.

Commitment 2

We will work with NHS Inform, and stakeholders across the Neurological Community to improve the information available on neurological conditions, awareness of the NHS 24 Care Information Scotland resource, and support the further development of a local Information System for Scotland (ALISS) as a national resource for sign-posting people with neurological conditions to care and support.

45. Question 8 asked if respondents agreed or disagreed with this Commitment and table 9 shows almost all those answering this question agreed with this commitment.

Table 9: Q8 Do you agree or disagree with Commitment 2?

	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)	19	2	3
Other (3)	2	-	1
Total organisations (49)	37	2	10
Individuals (96)	86	3	7
Total respondents (145)	123	5	17

46. 19 respondents then chose to provide commentary in support of their response to question 8. Most comments were made by only small numbers of respondents. Once again, some of these respondents noted their support for this Commitment but a small number reiterated the importance of clear signposting and access to information.

47. A small number of organisations also pointed out the need for information to accommodate different abilities and for information to be provided via a range of different channels and in different formats.

48. Some respondents commented specifically on ALISS (A Local Information System for Scotland), with reference to the need for the presentation of information to be more accessible and user-friendly. A small number of respondents suggested improvements to ALISS and these included an improved search function and presentation of information by place name rather than postcode. There were also queries on how information is checked to ensure it is up-to-date and what guarantees there are for funding to continue.

49. One organisation in the NHS / Health sector suggested reference could be made to existing and development of new evidence-based SIGN guidelines, in relation to identifying and informing good practice.

50. Reiterating comments made in relation to Commitment 1, there were comments that:

• There is a need for greater resources.
• Care services and support are too fragmented across Scotland.
• Technology should be better utilised.
• There is a need to reach those who may not identify as a carer.

51. The draft NAP went on to note that staff are sometimes reluctant to share information with peoples' families and carers and that their carers were not given the information or help they needed. It also noted the key role of unpaid carers and the need to support their health and wellbeing.

Commitment 3

We will work with stakeholders including third sector organisations and local carer information and advice services to develop approaches to enable improved access to training materials that will support carers as required under the Carers Act, in addition to working to make carers of people with neurological conditions aware of their new rights to support. We will work with stakeholders, including carers and local carer information and advice services to explore the need and potential delivery routes for further support to carers in the use of equipment and interventions to support those with neurological conditions, for example through the development of guidance on the content and delivery of training programmes for unpaid carers. We will encourage the involvement of people with neurological conditions and their carers in the development of Integration Authorities' local carer strategies.

52. Question 9 asked if respondents agreed or disagreed with this Commitment and table 10 shows almost all of those answering this question agreed with this Commitment.

Table 10: Q9 Do you agree or disagree with Commitment 3

	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)	3	-	-
Total organisations (49)	40	1	8
Individuals (96)	87	2	7
Total respondents (145)	127	3	15

53. 19 respondents then chose to provide commentary in support of their response to question 9. Most comments were made by only small numbers of respondents.

54. Three key themes emerged in response to this question. First, a number of organisations, mostly in the third sector and NHS / Health organisations noted their support for this commitment. Second, there were references of a need to ensure partnership working across the health service and third sector organisations to ensure that training, support and best practice is consistent and there is no disconnect in advice and support. Linked to this latter point, the third key theme was that there will need to be additional training and access to training for carers, with some suggesting condition-specific training and others noting the relevance of training beyond conditions to encompass mental and emotional health and wellbeing.

55. A small number of respondents also noted the need to consider carers and their needs and to ensure they can access training in a variety of ways and not just through digital technology.

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

• A need for training and planning for service staff.
• The need for resource to ensure appropriate training can be delivered.
• A need for clear signposting to training and support.
• The importance of involving carers so they can support individuals with neurological conditions.
• A need for explicit reference to respite care that is age-appropriate.
• Concern that Local Integration Authority Carer Strategies will not consider the involvement of patients and carers with specific neurological conditions and are likely to have a much broader based approach to carer support.

In summary:

A majority of respondents supported Aim A and Commitments 1-3, although there were some comments of the need to follow through on these.

Commitment 1: there were some requests for a definition of 'self-management'; additionally, there were some comments that self-management will not work for individuals with rapidly progressing conditions. In order to deliver on this commitment, there were requests for the specialist neurological workforce to be expanded; as well as ensuring this workforce has the necessary skills and expertise. There was also reference to the need for partnership working across the sector.

Commitment 2: there were some requests for clear signposting and access to information; and for information to be provided via a range of different channels and in different formats. Comments about A Local Information System for Scotland (ALISS) were that the presentation of information needs to be more accessible and user-friendly, as well as up-to-date.

Commitment 3: there were comments of a need for partnership working across the health sector and third sector organisations so as to ensure that training, support and best practice is consistent, and there is no disconnect in service provision, advice and support.