After people receive a diagnosis of Functional Neurological Disorder (FND) in Northern Ireland, there is no care pathway or specialised healthcare services available, and they are provided with no comprehensive information about the diagnosis or where to access support. We wanted to develop a project that would connect those with FND to the FND community, create an information booklet based on the needs of those with FND in NI and raise awareness of the condition within the community, healthcare, educators and politicians.
Over a six-month period, we have been able to create a new FND information booklet. The booklet has been developed with input from our volunteers and service users, community groups, counsellors and health providers. We have also been able to put 8 extra people through our counselling service. We were aable to provide the organisation with much needed technology (computer). We were also able to hold an extra drop in in Portadown as well as Belfast. We have an online peer support group which consists of 300 people, where we posted what we were doing as well as advertising our counselling service. We also have a weekly zoom peer support where we collected input for our booklet. We also held drop ins in both Belfast and Portadown. We’re we collected data. Two of our volunteers put together a questionnaire regarding more drop ins and received feedback from over 100 participants.
Our booklet will go out to all newly diagnosed patients as well as health professionals and other institutions such as schools. Very little is known about FND, but by raising through more social media activity our profile our numbers have increased. By involving people through volunteering, has increased their self-worth and confidence. Many of our volunteers have also held awareness events to raise funds e.g., abseiled down the Europa, sponsored cycle, Halloween event. We also have the YMCA hold a coffee morning and a VW club holding an awareness rally. We also approached a publicity organisation and now have free publicity in 5 shopping centres across NI (electronic boards). We are raising the profile of FND and now receive referrals from consultants and other Health professionals. We have now had over 100 people through our counselling service in 3 years.
The focus of our mentoring support was on organisational skills and social platforms (how to set up twitter). We spoke about the best way to take the organisation forward and how our volunteers can help us with that. We have become more aware of the important role of our volunteers. How we engage volunteers and how social media is important to getting our message across. We were delighted to visit fellow mentee, Brookville’s Enterprises community garden. It was great to understand the different approaches to improving health and wellbeing and addressing health inequalities.
We have a better understanding of the wide-ranging issues of health inequalities and the importance of addressing these issues. We shared the learning on the importance of community/volunteer involvement regarding health inequalities at our weekly peer support group. This is a significant issue for our group as nearly all have faced health inequalities. We feel more confident in addressing these issues, as well as developing the organisation regarding volunteer involvement and awareness raising. We feel confident to approach these issues with health professionals and politicians as well as the general public.
Being able to produce new booklets will be so important for raising awareness of FND going forward, as well as providing those with the condition the much-needed information that is currently not provided by health professionals.
"Having a mentor to guide and support you is so valuable. We felt we had someone on our side and our confidence in ourselves as an organisation grew. We are so glad we got involved with Elevate, the funding was important to help us change health inequalities that exist for those with FND but having a mentor for ourselves was the turning point in our organisation, she gave us the confidence and encouragement to carry on the important work of involving people to shape their own services. Thank you, Jenny, and Elevate we feel enriched by your support.
Jeanette Bramald, Co founder and volunteer, FND Matters N.I.
