This week I have taken part in a series of Workshops organised by the Neurological Alliance of Scotland, which shared information and experience of services to support people living with Neurological conditions in Scotland.
Every area and condition is different and what works in one area may not in another, but it was brilliant to hear from many different organisations across Scotland describing their projects and how they support people with Neurological conditions.
There were representatives speaking from a number of organisations and projects that I thought would be helpful to share with you. Though many of the projects discussed were focused on a specific geographical area, a lot of the information they provide is relevant wherever you are located.
There is shift in focus to patient centred care and the belief that people should be able to access the care they need no matter where they live.
Digital support has also developed hugely over the last 2 - 3 years and there's a lot of information out there that can help, especially if you live in a remote area or mobility or ability to travel is restricted. Sometimes there's so much out there it can bamboozle you but there are many out there who can help you get the right support that you need.
Throughout the 3 days of workshops, the importance of good communication between healthcare providers and third sector charities and organisations out there really stood out. The NHS doesn't have infinite resources and staff to reach out to the growing number of patients with Neurological conditions as much as they would like to, so the role of third sector charities and organisations is crucial and by working together, care and support can be improved for everyone.
The workshops were really helpful and it was great to see what work is going on in other regions to support people with Neurological conditions. Something that stood out and was a common theme throughout the 3 days, was the importance of looking after mental health as well as physical health.
There were challenges before the restrictions of the Covid pandemic, but lengthy periods of isolation, not being able to attend certain treatments, socialise, talk about things or get the support and treatments needed took a massive toll on people. Not just physical health, but mental health, and many charities and services have reported an increase in people seeking treatment and support since Covid restrictions lifted.
Whether you are newly diagnosed with a Neurological condition, or have been living with a condition for a while, it is important to be able to get the care and support that you need, for physical and mental health. As conditions develop, symptoms alter, new treatments are introduced, or you have questions about anything to do with your condition, it is important to get the support you need and deserve.
Neuro Hebrides are here for support for people with Neurological conditions and their carers. We meet regularly and have a fantastic network of people who have living experience of many Neurological conditions and can understand and support you. We also work closely alongside healthcare providers and other third sector charities to help to campaign for improvements in the care and support for people with Neurological conditions.
You will never be judged or defined by your condition and come come to Neuro Hebrides and be yourself. If you would like to join Neuro Hebrides, you would like to hear more about us or need to reach out for support, please get in touch.
Here is an outline of many of some of the speakers from the 3 days of workshops. The projects are brilliant and there's not enough space to write about them all in a lot of detail, but you can click on the link for more information.
The first day discussed projects which were focused on self care.
Parkinsons Connect. A great support service which seek to engage with people from the point of diagnosis: What is Parkinson’s Connect? | Parkinson's UK (parkinsons.org.uk)
Revive support people living with MS, including family and carers, enhancing their well-being and empowering them to live full and productive lives. Revive MS | Support For People Living With MS | Scotland (revivemssupport.org.uk)
Epilepsy Connections provides services that support people with epilepsy, their family, friends and carers, as well as the professionals working with them in the Greater Glasgow & Clyde, Forth Valley, and Ayrshire and Arran health board areas Epilepsy Connections Home - Epilepsy Connections
provide in-person and remote self-management support for people living with long-term health conditions or facing challenging life situations. Thistle Health and Wellbeing -
Quarriers provide practical care and support for vulnerable children, adults and families who face extremely challenging circumstances. We challenge poverty and inequality of opportunity to bring about positive changes in people’s lives Quarriers
The second workshop focused on Digital Healthcare and discussing the importance of self-care and referral through digital solutions, something that was made more important during the Covid pandemic. But it is important to note that although many people feel digital healthcare solutions very beneficial, they should not be the only option available and are not suitable for everyone all of the time.
The MS Society Scotland have the MS Wellbeing Hub, a website which has a lot of information and support for people with MS in Scotland. The MS Society carried out some research and found that after they ran an awareness campaign for the Wellbeing hub, they found that 70% of people seeking help on their website were new referrals reaching out for support and guidance for the first time since diagnosis. Wellbeing hub (Scotland) | MS Society Spina Bifida and Hydrocephalus Scotland discussed how they have launched a SBH healthy wellbeing app. You can record and track your symptoms, feelings, and so much more. SBH Scotland | myCarepod App
The final day discussed improving integrated care.
Healthcare Improvement Scotland spoke about a self evaluation tool for Neurological standards. The tool aligns with the HIS Quality management system. It sets out what good care looks like. It is transparent and impartial. Tools for monitoring and evaluation - Tools and resources - Public Health Scotland
Midlothian Wellbeing service then spoke about Midspace | Midlothian Wellbeing Service (Thistle Foundation and Midlothian Health and Social Care Partnership)
They commissioned Artlink to carry out their engagement work.
Cerebral Palsy Scotland spoke about their project CP Connect Cerebral Palsy Scotland
A project which came from the increased number of people seeking help after suffering declined physical and mental health following the Covid pandemic.
Breakthrough series Collaborative Breakthrough Series Collaborative - Quest
Moira Flett from NHS Orkney, project lead for MS and MND. Developed an electronic source of information on Neurological conditions. It also has links to advice on things like eating well and sleeping well. Neurology | NHS Orkney (scot.nhs.uk)
Thank you for reading and take care.