It’s been an incredible 20 years!

Overview of NAoS timeline

Now that we’re 20 years old, we’d like to tell you a little bit about our story. It took a while to gather a timeline together of our history and so this blog is one way we can create a public record of our achievements.

The Neurological Alliance of Scotland formed in 2004 with just three member charities, the MS Society Scotland, Parkinson’s UK and MND Scotland. Over the last 20 years we have worked together to co-ordinate priorities amongst neurological charities and to amplify the voices of people living with neurological conditions. We now stand at 54 member charities who support a wide range neurological conditions.  We have achieved a huge amount on a tiny budget and we want to celebrate this in this blog.  

2004-2010

The initial priority for creating NAoS was to call for a cross sectoral approach to creating national standards of care for people with neurological conditions. Things started off well when we managed to get a meeting with the then First Minister, Jack McConnell together with JK Rowling, to talk about this.

After five years of campaigning the Neurological Health Services Clinical Standards were published in 2009, followed by the Clinical Standards for Neurosurgical Services in Scotland the following year. These standards had significant input from NAoS in their drafting and development.

2011-2012 

As NAoS was becoming more established, we set up the Neurological Voices programme to empower those in Scotland affected by neurological conditions to contribute to the development and improvement of neurological services.

We cannot find records of when the programme was initially set up, however we know from Scottish Government records that as of 2012, £100,000 had been granted to the Neurological Voices programme. 

The National Neurological Advisory Group (NNAG) was also established in 2012 to ensure continuing commitment to improve services for people with neurological symptoms and conditions throughout Scotland and to further cement the relationship between the Neurological Alliance of Scotland, NHS Boards, Scottish Government and the wider neurological community, including people living with neurological conditions. 

2015-2019 

Unfortunately, in 2015 NAoS lost its funding from the Scottish Government. We had to say goodbye to our members of staff and the operations of NAoS fell solely on the shoulders of trustees. While this was challenging, we now had 38 members and were still able to achieve a great deal 

Crucially in this period, we contributed to the review of the national landscape for neurological conditions by the Scottish Government. This was really important as it resulted in a change to the structure and leadership of the NNAG leading to the formation in 2016 of the National Advisory Committee for Neurological Conditions (NACNC), which is what we have today.

The Chair and Vice Chair of NAoS have represented the neurological third sector on the NACNC (affectionally known as the ‘NACKNICK’) ever since.

Through 2017, NAoS contributed to a project looking at the key issues for those living with a neurological condition across Scotland. NAoS was invited by the Scottish Government to lead on the planning and administration of a series of national engagement events to facilitate the production of the National Neurological Action plan. We supported members to engage and respond with the framework at development stage and continued to do this as the framework moved into implementation stage.

In July 2018, we became a Scottish Charitable Incorporated Organisation, otherwise known as a SCIO. 

2019-2020 

The revised General Standards for Neurological Care and Support were published in March 2019 by Healthcare Improvement Scotland. NAoS was heavily involved in the development of these standards which were developed to take account of the priorities and principles of the Scottish Government’s national neurological action plan and to ensure consistency in the approach to neurological care and support services.

The standards set out what care people can expect to experience throughout Scotland, regardless of the type of neurological condition they have, their geographical location, care setting or personal circumstances and aim to ensure individuals have appropriate access ‘to the best possible care’. 

On the 18th December 2019, Joe FitzPatrick MSP, the then Minister for Public Health, Sport and Wellbeing launched the Scottish Government’s first Neurological Framework for Action at the William Quarriers Scottish Epilepsy Centre. This was a major milestone for the sector and the start of the £4.5m investment into collaborative cross sectoral projects aimed at improving the support available to people affected by neurological conditions. 

In August 2020, the Neurological Alliance of Scotland secured grant funding from the Scottish Government to engage a co-ordinator so that we could deliver greater engagement with our members, act as a conduit between government and our members, and to support the delivery of the Framework.

Once we had our Programme Co-Ordinator onboard, we began holding regular open meetings with all members, launched our monthly members’ newsletter and social media accounts and started having regular monthly meetings with Scottish government.

2021-2024 

We started 2021 with a new 3-year strategy, which focused our activities on three central pillars: Inform, Connect and Influence. We established a policy group to guide our influencing work and publish useful ‘What to Expect’ SDS factsheets.

We published a Scotland policy report in June 2022 from the Patient Experience Survey, called “Together for the 1 in 6” which secured significant media coverage and Parliamentary attention, securing a debate in the Scottish Parliament which led to commitment of ongoing framework funding. 

Seeing the correlation between neurological conditions and poor mental health through the data from the Patient Experience Survey, we then established a Mental Health subgroup, which published a report this year.

Working on the Patient experience survey brought us closer to the English, Welsh and Northen Irish Neurological Alliances, enabling us to later collaborate with them with our Brain Awareness Week campaigns in 2023 and 2024.

This period also saw us expand a lot of our work towards supporting carers, including the carers mapping project, the knowledge sharing event and production of resources in collaboration with our members

2024 

We turned 20 in 2024 with 54 members. In collaboration with members we launched our new 2024-7 strategy which continues to focus on Inform, Connect and Influence but with a new strategic aim to Sustain.

Reflecting on these past twenty years inspires us for what lies ahead in our next two decades. Working collaboratively to speak with one unified voice has led to: the creation of national standards in neurological care and support; a neurological framework action plan adopted by all health boards with a £4.5 million pledge by Scottish Government; a National Advisory Committee for Neurological Conditions which influences policy makers at the highest level; and a network of interconnected organisations which share knowledge, skills and expertise to make the sector stronger. These are significant achievements and we are proud to have been part of them. Now we need to focus on making the next 20 years just as worthwhile. 

 

Loading