Monthly Archives: May 2020

Special Appeal for Funds

Fund Raising

During the current Covid 19 pandemic, we have been obliged to cancell many fund raising events and this has left us some £10,000 short of funds in 2020 to provide support to people living with MND and their families in East Kent.

The East Kent Branch of the Motor Neurone Disease Association (MNDA) has launched a special appeal for donations to maintain their vital support for people living with the terminal illness Motor Neurone Disease (MND) in East Kent.

If we are unable to increase our funds over the next few months, we may have to reduce the level and types of support that we currently provide. Clearly that is not something we wish to happen as we know how much these things mean to people living with MND. 

If you are one of the lucky ones who is saving money during this crisis, by not going out, holidaying, not visiting the hairdresser, please consider sending some of those savings to support people living with MND please visit:

https://www.justgiving.com/fundraising/mnda-east-kent-special-appeal

We completely understand that not everyone is in a position to support us but if you are able to donate, we will ensure every penny will be spent in continuing to provide this vital support for people in East Kent, at a time when it is needed more than ever.

Thank you from all of us at the East Kent Group of the MND Association.

Video Consultations

Awareness, General Support, Medical

One of our members wrote the following report about services being offerred during the current pandemic crisis.

Due to Covid-19 my normal clinic was cancelled. I was offered a video consultation instead.

This would be with the same consultant and specialist nurse that I would have seen.

The only stipulation was that I had to have a smartphone (ios or android).

If I didn’t have a smartphone there was a contact number to call to advise them.

On the day of my appointment I received a text message with a link that I had to press at the time of my appointment.

This opened a video screen on my phone where I could see the consultant and specialist nurse in a room.

The video quality was very good and the audio was clear. I had no buffering issues. Although I have a very poor mobile phone signal I have a very fast internet connection so I tend to run everything through my internet connection.

I felt that I had had a proper consultation and had covered everything that I wanted to ask (I had made some notes beforehand).

I didn’t feel rushed.

An issue was that normally before the appointment I would have blood/lung function tests at the hospital and then discussed at the meeting.

This could not happen.

Another issue is privacy. Its important that you are somewhere quiet and can talk freely. Likewise it is important at the hospital that it is treated as though the patient is physically in the room.

I would certainly like to use the system again.

When we are in more ‘normal’ times perhaps we could be given a choice hospital attendance or video consultation.

Chrissie Batts MND Specialist Nurse who was part of the above consultation added the following.

Since the start of the Covid-19 virus which has caused havoc in our lives, we have all had to adapt.  Being a technophobe with little knowledge, this has been even more of a challenge.

Usually, I would meet people living with MND at home or in the clinic, having face to face to discussions.  As clinics and home visits became suspended, I was asked to trial the new system that EKHUFT were introducing to support consultations.

I trialled this with a couple of colleagues prior to breaking it out to patients!

I surprised myself as to how easy this system is to use, so am encouraging other nurses to use this system.  Obviously it isn’t the same as meeting face to face but, at the present time, it is solving a few difficulties.

If you have used the system with me please let me know your thoughts which I can share with the IT team