Neurological Programme review of 2017

Our Neurological Programme review activities over 2017 for our annual report.

In a challenging year, where we were heartbroken by the death of Paula Aldin-Scott who had led the first year of work of this programme with passion and great commitment, we are however building on her legacy and have moved forward and are playing a key role in shaping the Action Plan for Neurological Conditions which is due to be published in autumn 2018.

Supporting the development of the action plan.

At the NACNC in Autumn 2017 they set out to map services for adults with neurological conditions as well as map the workforce. Alongside this the Neurological Programme is leading in partnership with Neuro Alliance the work on collecting and engaging with the views of those with lived experience to help shape priorities and the future national action plan. Working closely with Our Voice coordinator a report has been developed to learn from existing data on lived experience; including research by leading neurological charities and also learning from stories from Care Opinion. This report sets out a series of themes which were identified for action.

The emergent themes identified in 2017 were:

Diagnosis and Care Pathways

Suggested priorities in this area: Co-production of clear pathways for neurological conditions

Carers support and development

Suggested priorities in this area:

• Support for care organisations to train care staff to properly support people with neurological conditions
• Increase respite services for people with neurological conditions
• Clearer information and support to navigate the range of benefits and support available to carers

Communication

Suggested priorities in this area:

• Develop a framework for clear lines of communication – via different means – between people and health professionals
• Include clear points at which information needs to be given out
• Embedding shared decision making with people at the centre

Care Coordination

Suggested priorities in this area:

• Better care coordination between healthcare professionals
• Increasing the provision of named persons to act as care coordinators for people with neurological conditions

Specialists and education

Suggested priorities in this area:

• More awareness of neurological conditions across all therapy providers
• Development of training for GPs and other health professionals on the impact of neurological conditions

Community Neurology Services

Suggested priorities in this area:

• Increased community based services supporting people to live well, including services like specialist physiotherapy as well as third sector provision
• Identifying the prevalence of people with neurological conditions within care homes and considering where home support packages maybe more suitable.
• Implementing training programmes on neurological conditions for care home staff

Information and active self management support:

Suggested priorities in this area:

• Signposting embedded in GP practice communication
• Developing/Improving directory of services
• Wider awareness/prevalence of peer support
• Creation of information materials relating to rights and options particular to people with neurological conditions

In early 2018 a number of focus groups are being held across Scotland to check out these themes. A survey will also be developed to deepen the understanding and ensure recommendations are shaped by as wide a group of people living with neurological conditions including the seldom heard communities. If you want to get involved email Audrey.birt@alliance-scotland.org.uk

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