As we start the new calendar year, I believe it’s always worth a quick glance in the rear-view mirror to reflect on what we’ve done and what we have learned from the last 12 months.
Since I joined the Brain & Spine Foundation in early 2019, my appreciation of the need for high-quality information and support – both at time of immediate crisis and along the journey of “living well with” a long term condition – has grown. I’ve learned more about why our core services are well used and appreciated, and why there is still more for us to do in order to improve the lives of those affected by a neurological problem.
In November I was pleased to have been elected to the Board of Trustees at the Neurological Alliance – the membership organisation for charities operating in the neurological sector. I look forward to working with the Alliance staff, the Chair and the Trustees; as well as the other member charities to help guide the organisation in its mission to improve the care and lives of those with neurological problems in the UK.
As this year begins it is also equally important to look at the road that lies ahead of us, and in our case to look at how we can develop our services to reflect the needs of the community that we serve.
In 2020, we’re looking to expand the capacity of our core services in response to the varied and complex needs of those who contact us. We’ve been told that more support around mental health issues would be appreciated, as would help to address some of the practical and social impacts that living with a neurological problem brings.
To this end, we are exploring how to involve more specialist staff in our helpline services, so that they may be able to answer your questions in a timely, expert and appropriate way. We’re also looking at how we can enhance our information and content on our website and social media channels for you to access the right sort of information and support in a way that best suits your needs.
Equally, we recognise that many of our community are of working age, and are facing challenges of getting into work, or returning to employment after – and we realise that these issues are multi-faceted. The challenges are there for those directly affected, particularly as neurological problems can be ‘invisible’ or lead to hidden disabilities, as well as their family and friends, their carers and, in this instance, their employers too.
For this reason, we are working on the development of information and support to help these groups address the needs of people affected by neurological problems in the work place.
We’re also excited to be exploring the development of community based support groups where the needs of those with more complex needs are recognised and catered for at local community level. This concept of a regularly held or permanent drop-in centre based in the local community is being developed in collaboration with Primary Care and Community Neurology Society and others. Look out for news of ‘NeuroCafes’ in future newsletters.
As a learning organisation in a dynamic field, we’re always seeking to ensure our information and services are kept up-to-date. In 2020, we will be expanding our online knowledge base by updating our comprehensive A-Z of neurological topics.
We will be including more neurological problems and conditions, alongside relevant sources of information, support and community services. We are already hard at work on this project and hope to have this refreshed database published and accessible through our website in the coming months.
As we look forward to an exciting year, I would like to thank you for your continued support and encourage you to get even more involved: use our services, spread the news of what we do and encourage others to contact us. Please also let us know how and where we can improve what we do for you.
Marc Smith, CEO