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Status
Received: on time
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Income
£35.0K
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Spending
£31.2K
Public benefits
The direct benefits flowing from our purpose is that by raising awareness of FND we hope to bridge the gap between health professionals and patients within the FND community. To share our understanding of the long term impact of FND and to promote that view to the wider community, legislative, healthcare and educational bodies and by doing so we
can influence and inform policy makers to support improvements to those with FND. To bring FND patient experience, voice and ideas to work together as a united voice on behalf of people with FND. We also wish to address the fact that when patients are first diagnosed with FND no literature is available through the NHS but until that is available our leaflets can be given to newly diagnosed patients to enable them to access help and support. The direct benefit of our specialised Counselling service is that it is easily accessed and waiting times are usually within 4 weeks, whereas this service is not available through the NHS and no other charity offers this specialised service. The benefits can be identified by the fact that the health professionals and the general public are becoming more aware of FND, and this has been brought about by targeting GP's, elected representatives and healthcare professionals with leaflets, we have also conducted workshops for health professionals and advised on Speech & Language and Dysphagia leaflet content, this has resulted in the fact that FND patients are now being referred by Healthcare professionals to FND Matters NI. Feedback forms are also being returned through our Counselling service and to date we have received 20 forms back from the approximately 36 people who have gone through Counselling. We have 9 currently going through Counselling and a waiting list of 4. Of the 20 forms we have a rating of excellent (17) Good (2) Fair (1) when they were asked to rate the service. When asked - did counselling help you understand your condition/problems better - a little (0) somewhat (3) a great deal (17). No harm arises from any of the purposes. The charities beneficiaries are those diagnosed with Functional Neurological Disorder, their carers and families. Very little support is available through the NHS, and FND Matters NI being the only charity in Northern Ireland offering support through it's specialised Counselling service, peer group support and signposts advice services. No private benefit.
... [more] [less]What your organisation does
The organisation carries out its purpose by increasing awareness of the needs by issuing leaflets detailing symptoms etc, services available form GP's, neurologists, neuropsychologists, occupational therapists and also details of our specialist counselling service. These leaflets were also sent to to GP surgeries in Northern Ireland, all elected
representatives in Northern Ireland, several Consultant Neurologists, all CAHMS centres, some speech and language therapists and several schools attended by our Young Persons Group. FND Matters NI are members of NICVA, and Northern Ireland Neurological Charities Alliance. We are heavily involved in co-production initiatives such as PPI and ICPS raising the profile of FND. We also support and encourage those with FND to seek a proper diagnosis from a neurologist and to insist on the proper follow up treatment from a health professional as unfortunately no proper medical pathway is in place as yet for FND sufferers. Unfortunately FND Matters NI have no premises at present, but do have a list of volunteers, some of whom we have trained as befrienders. We also have a weekly peer group meeting via Zoom and also a bi-weekly young persons group. By meeting via Zoom participants can interact with one another and help relieve the feeling of isolation which can be overpowering. Our website was established in 2019 and gives a comprehensive overview of FND. We also held face to face conferences in 2019 and 2020 at which our speakers were leaders in FND. In 2021 our conference was held virtually and our main speaker was Professor Jon Stone who is a world renowned expert in FND. The conference is available on UTube. In November 2020 we set up our Counselling service with 3 Volunteer Counsellors and they were trained in FND by Dr Nigel Lyttle and Jeanette Bramald.They also received specialist Trauma Counselling. We now pay them fees which was enabled by a National Lottery Grant and by fundraising
... [more] [less]The charity’s classifications
- The advancement of health or the saving of lives
Who the charity helps
- Carers
- General public
- Mental health
- Physical disabilities
- Voluntary and community sector
- Volunteers
- Youth (14-25 year olds)
How the charity works
- Advice/advocacy/information
- Community development
- Counselling/support
- Disability
- Education/training
- Human rights/equality
- Medical/health/sickness
- Volunteer development
