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Alliance Strategic Plan 2014 - 2017

The Alliance Executive Committee has recently established a strategy sub group responsible for developing the next strategic plan for 2014 - 2017. The strategic plan will be underpinned by the main priorities of the wider membership identified via the recent members priorities survey (see below) which form strategic objectives for the Alliance work going forward.

The plan sets out four key aims of the Alliance for the next three years which are:

To raise awareness of neurological conditions amongst the public and key decision makers

To improve the diagnostic process for those with suspected neurological symptoms.

To ensure those affected by Neurological conditions received the right care, at the right time, in the right location regardless of where they live.

To ensure that people with a neurological condition have access to the information they need.

The strategy group are currently reviewing the draft plan to ensure it is consistent with Scottish Government policy and improvement methodologies. Once a final draft is available it will be made available to the Alliance Executive Committee for comment and then circulated to the wider Alliance membership for feedback.


Members Priorities Survey

We recently conducted a survey with the Alliance membership in order to identify what they believe are the main issues of importance and concern for the individuals that their organisation represents. The survey included thirteen position statements that the Alliance believes reflect important issues and concerns for people affected by neurological conditions. Members were asked to rank their top five priorities from the statements and responses were collated and coded to arrive at a final five of shared priority. The Alliance will develop and target its future strategic and campaign activity based upon these five areas of collective importance. The top five shared priorities were:

1. Awareness
Awareness of neurological conditions is low compared to many other long term conditions. The impact of neurological symptoms on quality of life and in particular better understanding of hidden symptoms is needed.

2. Diagnosis
The diagnosis process of people with neurological conditions could be significantly improved. Symptoms are not being taken seriously by health professionals; diagnosis is taking too long and is often not confirmed by a neurologist.

3. Variations in Care
Some people with neurological conditions face unwarranted and unacceptable variation in the health and social care services available to them depending on where they live. Shortcomings and disparities should be addressed in order to ensure consistent and equitable access to appropriate specialist care across the country for all people with neurological conditions.

4. Rehabilitation
Everyone with a neurological condition should be able to access appropriate rehabilitation services to support independent living, including participation in their communities. Rehabilitation services should be provided to people with stable and degenerative conditions as well as those who require rehabilitation as part of their recovery. Rehabilitation services should recognise the importance of rehabilitation in preventing or delaying deterioration, and enabling the person to cope with changes in their condition

5. Access to Information
People with neurological conditions should have access to the information they need to make informed choices about their care, including information about; medicines, treatments, palliative and end of life care, financial support, social care services and support for carers.

Neurological Alliance of Scotland AGM 2013

Our AGM was held in June and members in attendance heard presentations from the Child Poverty Action Group and SCVO on the topic of welfare reform.

Mark Willis, Expert Rights Worker, Child Poverty Action Group gave a presentation about the main changes and the timeline of the Welfare Reforms. Mark described how the Coalition Government’s unprecedented cuts have impacted greatly on disabled people and that many of the changes yet to take place will be of concern to organisations representing people with neurological conditions.

Lynne Williams, Policy Officer SCVO presented some of the findings in SCVO’s recently published welfare mapping report and advised that SCVO understands the significant policy challenges that are having significant impact in Scotland. There are gaps in service and many third sector organisations have seen a significant increase in enquiries about benefit changes. SCVO are keen to hear views of organisations to feed into their policy work.

Chair of the Alliance, Craig Stockton outlined the work of the Alliance over the last year and thanked Staff and Executive members for their continued commitment.

Neurological Health Service Experience Survey

The Neurological Alliance of Scotland undertook a survey of people affected by neurological conditions in 2011 in order to capture information on people’s most recent encounter of their neurological health service. The final report sets out the findings of the survey and discusses some of the implications and limitations of the information gathered.

The aim of the survey was to provide independent information to NHS Boards and Healthcare Improvement Scotland (HIS) regarding local NHS Neurological Health Services. Questionnaires were distributed via relevant Neurological Alliance of Scotland member organisations and a total of 485 people with different conditions responded.

Read the final report here.

The Alliance is now part of a small working group with the NNAG and some of its stakeholders to design and undertake a second survey of people using neurological health services. It is envisaged that this second survey will be circulated via Alliance member organisations and NHS in the next couple of months.

Alliance Response to Integration of Health and Social Care Proposals

The Alliance has submitted a response to the Integration of Adult Health and Social Care Proposals. Click here to read our response.