Motor Neurone Disease - Vital communication aids to enable continued links with support networks/peers/professionals for those affected by this devestating terminal illness
The Motor Neurone Disease Association has always held traditional support meetings within our local Group structures (e.g. Hull & East Yorkshire or Scarborough & Bridlington) on a monthly basis for those affected by the disease, for carers and also a separate groups for bereaved carers.
Our local Association Visitors also support people with a befriending role, where before Covid they were able to visit people needing befriending and emotional support on a regular basis, supporting them to come to terms with diagnosis, disease progression and multiple losses as new symptoms develop. Support also includes carer support and support following bereavement.
This traditional model of support has always been well received and over the last 9 months people have had this support removed from them and have been left with telephone support only, particularly difficult when there are speak difficulties and one needs to rely on facial expression/cues, but additionally without seeing a friendly face on which they had become accustomed to seeing regularly. Support also from peers has been withdrawn, particularly because people with MND fall within the extremely vulnerable group, with many of them having loss of respiratory function as one of their symptoms.
Carers have been cut off from the carers support and from their peers and become increasingly isolated within the home, even more so than outside of the Covid period.
For our project we want to be able to offer people without a tablet one so that they are able to interact with their peers through support meetings and our Association Visitors who are now having to support people through online methods during Covid-19We are aware that all our current support activities which are extremely valued have had to be cancelled due to Covid-19 and people have become isolated and cut off from the networks of support that they depended upon, particularly where they now don’t have access to online mediums and devices.
We hope to be able to purchase simple Tablets to allow people to interact by Zoom and other mediums so that they can still interact with others, which will help minimise social isolation and maintain emotional well-being whilst trying to also cope with the impact of an incurable palliative illness.
This equipment could be used by either a person living with MND, Carer or one of our Association Visitors to maintain contact.
Provision of this equipment will additionally allow people to have a link to video chat functions to maintain contact with professionals and their MND Specialist Nurses so that symptoms can be monitored as well as emotional well-being and continued support.
Reg Number: 06455490 | Charity Number: 1125856