Wednesday, 3 August 2016

Lived experience and neurological conditions: A personal challenge

Our latest post comes from Paula Aldin-Scott of the ALLIANCE's Neurological Programme on her personal motivation and supporting the voice of lived experience to improve neurological services across Scotland.
I moved into the not for profit sector in 1999, after 17 years in other sectors. I found the third sector allowed me to share and enjoy hope, empowerment, fairness, respect, and equality in the work I do and support.
My previous role was with the National Neurological Advisory Group (NNAG) whose purpose was to support and monitor the implementation of the Clinical Standards for Neurological Health Services which aimed to improve the journey from referral into services and ensure everyone who accessed a service experiences a quality of care that gives confidence.  Hearing the voice of lived experience was a vital element to this work, through the Neurological Voices Programme which sought to connect and empower people to get involved in improving local services.

There have been many successes in the delivery of improvement, as we championed the development of co-produced care plans for those living with neurological conditions and gave those committed to improving neurological services a forum to share learning and good practice.  One of the Neurological Voices’ success stories was the lowering of a pavement outside a NHS Greater Glasgow and Clyde Neurology Department which improved accessibility.

The challenges to creating a working environment that delivers on improvement come, ironically, from change. Changes in government, new legislation and policy, budgets, culture, demographics, roles and relationships. The most significant change to me being the enactment of the Public Bodies (Joint Working) (Scotland) Act 2014 and the advent of health and social care integration. This has shifted the landscape of health and social care in Scotland to which the neurological community, including individuals, organisations and health and social care providers, will have to adapt. 

Jamie Hepburn MSP, Scotland’s Minister for Health Improvement until May’s Scottish Parliament election, said in March: “The recently published A National Clinical Strategy for Scotland makes it clear that we want everyone, including people with neurological conditions, to receive care in their own homes or as close to home as possible.” 
I’m proud to say that the Neurological Programme, recently launched at the ALLIANCE, has these values at its core:
·         Co-production
·         A seamless health and social care service
·         Learning from the voice of experience
·         Collaborative working
The programme will strive to have the voice of lived experience heard and acted upon. 
Linking in with the Chief Medical Officer’s First Annual Report, Realistic Medicine, Dr Catherine Calderwood states that: “Shared decision-making is core to the safety, effectiveness and person-centeredness of care and therefore resonates with Scotland’s Healthcare Quality ambition. The person centred portfolio in Scottish Government is driving and supporting policies and quality improvements that help reshape health and care through the lens of people using services.”
As a reflection of this our Stakeholder Event on 28th July and Involvement Network event on 18th August seek to engage with organisations and individuals with interests across a wide range of sectors such as acute care, rare diseases, palliative care, advocacy and social care. 
My personal challenge as we move forward is to adapt my knowledge and experience from previous roles to support and empower this voice. I am grateful that what I have previously learned is not lost but is going to be built on in the future, and that people who live with neurological conditions will continue to be able to bring their knowledge and expertise to bear.  
Paula Aldin-Scott
The ALLIANCE’s Neurological Programme

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