Neurological care and support: consultation report

Executive Summary

The Scottish Government and the National Advisory Committee for Neurological Conditions (NACNC) developed a draft National Action Plan on Neurological Conditions (NAPNC), setting out a vision for driving improvement in the care, treatment and support available to people and their carers who live with neurological conditions.

On 13 November 2018, the Scottish Government published its National Action Plan on Neurological Conditions (draft for consultation) setting out a five-year Plan. The National Action Plan defines 'neurological conditions' to include a wide range of conditions, disorders and syndromes affecting the brain, spinal cord, nerves and muscles. A consultation to gather views on this Plan ran from 13 November 2018 until 8 February 2019. The final Plan was published on 18 December 2019 and has been retitled 'Neurological Care and Support in Scotland - A Framework for Action 2020-2025'.

Respondent Profile

In total, there were 145 replies to the consultation, of which 49 were from organisations (broken down as below) and 96 were from individuals.

Table 1: Respondent Groups

	Number
Health and Social Care Partnerships	2
NHS / Health	11
Pharmaceutical / manufacturing	2
Representative organisation	7
Third sector	24
Other	3
Total organisations	49
Individuals	96
Total respondents	145

Key Themes

A number of key themes were evident across questions as well as across respondent groups and these are summarised below.

• While there were high levels of support for the Vision, Scope, Approach, Aims and Commitments, there were some concerns that the Plan is too ambitious and it may be difficult to achieve, particularly in the current economic climate.
• Respondents noted the importance of partnership working across all stakeholders, including third sector organisations who are seen to have built up a great deal of expertise and knowledge about different neurological conditions. It was also seen as important to include individuals with neurological conditions, as they have lived experience of the impact of these conditions.
• Linked to the importance of partnership working, there were also calls for integrated service delivery and co-operation between different services and Health Boards, so as to ensure a truly multi-disciplinary approach.
• Respondents identified a need for appropriate funding and resources to be made available so as to be able to offer the wide range of services that are needed; some also pointed to the need for this funding to be long term so that services can be planned properly and sustained in the future.
• Linked to this latter point, there were requests for parity in services across the whole of Scotland; rather than the fragmented services seen at present; and some references to the inconsistent implementation of self-directed support as well as inconsistency across Health Boards in terms of the services available.
• There were calls for a workforce with the necessary skills, expertise and knowledge to deal with a wide range of different neurological conditions, with some references to existing problems in relation to recruitment and retention within the health and social care sector.
• While there was support for the Plan, there were also some calls for all age groups to be included in this, so that there is consistency in service offerings for all ages. At present, there are concerns that services available to Children and Young People are not then necessarily available within Adult Services.
• There were also requests for timescales for the introduction of the NAP to be provided, particularly given the need to increase the size and expertise of the workforce to enable the wide range of services to be available to all individuals with neurological conditions.
• While there was support for increased use of technology, there were some concerns that current systems are unable to communicate with each other and that there is a need for interoperability across all systems so as to be able to meet the aims and commitments laid out in the NAP.
• In a number of instances, respondents requested further detail and information on aspects of the NAP.

Consultation Questions

The following paragraphs summarise the main findings from each of the consultation questions.

Main Findings: Vision, Scope and Approach

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.

Main Findings: Aim A and Commitments 1-3

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.

Main Findings: Aim B and Commitments 4-10

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 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.

Main Findings: Aim C and Commitments 11-13

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 organisations as many currently contribute to research.

Main findings: Aim D and Commitments 14-15

There was almost universal support for this Aim and its related Commitments.

Commitment 14: Again, there were references to the need for funding and resources, the need to consider workforce requirements and to see how different networks can work together. There were some requests for rapid access neurology clinics to be extended to conditions other than epilepsy; and some reference to the need for treatment-specific protocols rather than generic protocols.

Commitment 15: There were requests for a realistic timeframe to be stated as well as comments that the The Scottish Atlas of Variation should not just be limited to NHS services.

Main Findings: Aim E and Commitments 16-17

Again, there was almost universal support for this Aim and Commitments.

Commitment 16: There were references of a need to ensure overall access to services, as well as timely access to services. There were also requests for reference to the need for a wider range of professionals in order to deliver the necessary services to individuals with neurological conditions.

Commitment 17: There were references to the need to ensure the provision of information and appropriate training for all staff, and the need to consider barriers to recruitment and retention in the sector.

Main Findings: Implementation of the Plan

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.