Neurological Alliance of Scotland

Making the case for change is absolutely critical. Please help build a picture of treatment, care and support for people affected by neurological conditions throughout the UK and the Republic of Ireland – fill out My Neuro Survey here: bit.ly/3A1kpzi #MyNeuroSurvey

Our next policy group meeting will be chaired by Mark Jackson from the PSPA. Having a rotating policy group chairperson gives all our 57 member charities the chance to take the helm on where we focus our attention as an alliance. Big concerns currently include the sustainability of the third sector, with emergency spending controls recently put in place by Scottish Government putting even more pressure on charities who are already competing for ever-decreasing funding pots. Our policy group is open to all our member charities and it's a very friendly group. So, if you haven't been yet, come along next Wednesday!

We are delighted that the #MyNeuroSurvey is now live! Your voice matters. Be part of the largest survey of people affected by neurological conditions in the UK & Republic of Ireland. Share your experiences of treatment, care and support. Children, young people, adults and the people who care for and support them can all take part – fill out My Neuro Survey here: https://bit.ly/3A1kpzi

Today our Programme Director Alice Struthers (nee Ferrero) and Chair of our trustees Morna Simpkins spent the day at Stormont with the other UK neurological alliances; the Northern Ireland Neurological Charities Alliance, The Neurological Alliance, and the Wales Neurological Alliance to explore areas for collaboration including the 2024/5 My Neuro Survey and the general election. It was wonderful to share ideas across our four corners of the UK, working together for the 1 in 6 people affected by a neurological condition.

We have a busy agenda for today's meeting - we'll be welcoming Fola Afolabi from the English Neurological Alliance The Neurological Alliance to talk about the next wave of the UK-wide My Neuro Survey (2024/5), as well as the Regional Network Co-ordinators, Susan Dillon and Karen Ormiston who are coming to update us on the self-evaluation of neurological standards. But that is not all, we are also welcoming Amy Dalrymple from Marie Curie for a discussion about the right to palliative care in Scotland. We are looking forward to seeing members online shortly.

Today, coinciding with the start of #MentalHealthAwarenessWeek, we have published our new report with six recommendations to better support the mental health of people affected by neurological conditions. Our report highlights how the underfunded neurological third sector is struggling to cope with the volume and intensity of demand for mental health support amongst those affected by neurological conditions who cannot get support from the NHS. There have been significant increases in calls to helplines since 2017, charities are increasingly having to deal with safeguarding issues as carers reach burnout and there are reports of increasingly complex calls to helplines, including suicidal ideation and complex post-traumatic stress disorder (PTSD). In addition, the report points out that the NHS routinely refers people to neurological charities for social and emotional support yet does not provide the third sector with enough funding to deal with these referrals. It is noted that a steady year-on-year increase in the prevalence of neurological conditions, coupled with extended NHS waiting times and difficulty accessing services has led to overwhelming demand on the neurological third sector. We highlight how early intervention to support mental health at the earliest stages of diagnosis of a neurological condition, often provided by third-sector specialists, has a huge cost benefit.  This is particularly true for children and young people who are being routinely failed by long waiting times to access CAMHS as well as for those affected by complex, degenerative, or fluctuating conditions. You can read our report here: https://lnkd.in/gHQH8A9X Mental Health Foundation

Everyone working in the third sector at the moment will relate to this clip from one of our members The Oxygen Works. They are looking for sponsors for their black tie fundraiser. For any runners out there, they have 3 discounted charity spaces for the Loch Ness marathon in September - see below for details.

After a very busy period, we're delighted to announce the publication of two new resources: * Neurological Conditions in the Community: Information for professionals This digital leaflet provides a guide for adult social care professionals on how best to support people in the community who have a/multiple neurological conditions. You can download this leaflet here: https://lnkd.in/euPApAu4 * Information for Unpaid Carers and Professionals This digital leaflet lists neurological conditions from A-Z as represented by members of our alliance, and signposts the reader to information and support provided by our members. This resource also includes information on carer centres and National Carers Organisations to help readers access specific support for unpaid carers, and to help carer centre staff have a handy directory of relevant organisations. You can download this leaflet here: https://lnkd.in/euKvn63G A huge thank you to all our members who helped to develop these resources, with a special thank you to our contacts at North Lanarkshire Carers Together and Connecting Carers for their invaluable advice and expertise. #UnpaidCarers #NeurologicalConditions #Directoryofinformation #A-Z #Caring #Information #Support #Neurologicalthirdsector #thirdsector #neurology

As part of #BrainAwarenessWeek, we'd like to celebrate our own organisation which marks 20 years this year. Founded by a handful of neurological charities in 2004, we now have 57 members in Scotland, covering 35 neurological conditions. Our members also include pan-neuro charities, supporting people with complex long-term conditions, irrespective of the diagnosis. Their services can include providing hyberbaric oxygen chambers, physiotherapy, self-management advice, complimentary therapies, peer support, advocacy support, and support for carers. We are proud of our growth over the past 20 years and of the strength of our membership which amplifies the voice of people with neurological conditions. We are committed to ensuring compassionate care and support for everyone affected by a neurological condition in Scotland. To see who our members are in more detail, or if you'd like to find support outside of Scotland, click on this linktree which will take you to the members page of all four UK neurological alliances: https://lnkd.in/dWwEvb3q #OneNeuroVoice

Our second members' meeting of 2024 is coming up next Wednesday 20 March from 10.30 - 12.30pm. We will be welcoming the Minister for Social Care, Mental Wellbeing and Sport for a 40-minute discussion about the National Care Service. We hope to come away with a better understanding about what the Scottish Government believes the NCS to be (and what it includes), what meaningful changes we can expect to see through the NCS over the first five years of implementation, and how it will be financed.