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:
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.
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
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
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
Sadly the 1st ever 10k Fun run to support MNDA to have been held on Saturday 18th April 2020 has been cancelled due to Corona Virus. This event was organised by students from East Kent College. MNDA East Kent would like to thank the students for all their efforts and very much hope the experience will be beneficial in future years.
There will be two run options.
A 10K run Starting in Minus Bay running to the Reculver Towers then Back again to the original start point.
A 5K run also starting in Minnis Bay but only going to the halfway point to Reculver Towers before returning to the start point.
There is an entrance fee of £10
which includes a t-shirt (collected on the day) and full insurance. Only
registered Runners can run, and they must wear the t-shirt for insurance
Each Runner is requested to find
sponsorship to support people living with MND in East Kent. There is no
obligation to raise sponsorship, but all support is greatly appreciated.
If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent. Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/team/mndafunrun so we can keep track of the total funds we raise.
If you can display a poster, we would
be grateful if you could print a copy and display it.
We thank our sponsors; with whose help we can raise substantial sums to help people living with MND in East Kent.
Reculver Fun Run Team
The Reculver Fun Run Team is a group of 1st-year students on a Level 4 HND in Computing at Broadstairs College. MNDA East Kent thank the students and very proud to be associated with Broadstairs College, with whom we have long standing relationship.
On Saturday 14th December some of our members had the privilege of attending a Carol Concert given by the Thanet Festival Choir at Holy Trinity Church in Broadstairs.
It was a most memorable concert, beautifully sung and wonderfully conducted.
The concerts raised £820.00 for MNDA and we are extremely grateful to all the members of the choir, Clifford Lister – the Conductor, Jim Clements – the Soloist and to the organisers. Many, many thanks to you all.
During the concert the most moving speech was made about the loss of a friend to MND. The speech is printed in full below, please read it, we found it very moving.
In June 2017 my clever, articulate, creative and very active
friend Elizabeth, whom I’d known since we were both 18, was diagnosed with
Motor Neurone Disease.
MND occurs when
special nerve cells in the brain and spinal column stop sending signals to the muscles, which gradually waste away, leading to
problems with walking, eating, drinking, speaking and breathing. The causes are
not fully understood, there is very little that can be done to treat the
disease, and most people with MND die within two years of diagnosis.
The speed with
which Liz deteriorated after that June diagnosis was horrific. By August she was unable to walk unaided. By
late October she was virtually wheelchair-bound, and needed help with washing,
dressing and going to the toilet. By the end
of the year she was using a ventilator to help her breathe. By April 2018 she
was starting to have difficulties swallowing and speaking, and had a PEG fitted
– that’s an endoscopic medical procedure in which a
tube is passed into a patient’s stomach through the abdominal wall to provide a
means of feeding when oral intake is not possible. It was, however, her breathing which came to dominate Liz’s daily life as the
illness progressed. She had to wear a face mask day and night, struggling for
breath, constantly trying to adjust the mask with only a very limited ability
to move her fingers and hands. She became terrified that she would choke to
death. Her personality changed and she began to suffer from cognitive
impairment, depression and panic attacks, sometimes turning against her
partner, Keith, and her other carers and friends.
Liz’s life became
a constant round of appointments and visits – medical, social care, physio,
occupational therapy, counselling, psychiatry – whilst at the same time she had
to cope not only with her illness but with the disruption caused by the
necessary alterations to her beloved home, including the installation of a
wheelchair accessible wet-room and a lift, and – later, when she became completely
immobile – hoists in her bedroom and
living room. Dealing with the authorities
involved was incredibly frustrating. Nothing seemed to happen on time, the
various departments and organisations did not liaise with each other, and often
the help that she and Keith needed was simply not forthcoming. Life
was a struggle on all fronts. She frequently described it as ‘hell’.
The help and support provided by the Motor
Neurone Disease Association was one of the few shining beacons of light in this
otherwise impenetrable darkness. The MNDA’s representative in her area attends
monthly meetings with the local authority Support Services, and was able to
offer advice and help navigate a way through the seemingly endless red tape and
incompetence. The MNDA advised on benefit entitlement and provided information
about care and mobility options, including the sourcing and financing of a
wheelchair-adapted motor vehicle. Funding for specialist
posts in hospitals like Kings is provided so that dedicated MND clinics can
take place. The MNDA also helps to fund specialist equipment, such as
custom-built electric wheelchairs and technical gadgets to help with speech and
communication, and sometimes these are available for loan.
Indeed, when Liz and Keith
decided to get married, in early December 2017, the MNDA was able to lend her
an electric wheelchair in which to ‘go up the aisle’ as, perhaps inevitably,
the customised one which had been ordered for her several months earlier had
still not arrived. There are also local groups which offer social events and
general support– such as the East Kent Group, represented here this afternoon –
and online forums for sharing advice and tips about coping with many symptoms
and side effects of MND.
MNDA assistance also proved
invaluable when, in July 2018, Liz’s care package was suddenly withdrawn on the
inexplicable grounds that ‘she did not satisfy the eligibility criteria’. This happened
at a time when she and Keith had very few reserves of energy left with which to
challenge it. Yvonne, the MNDA rep, was instrumental in fighting for the care
package to be reinstated and helping to formulate their appeal, and even came to
their home to be there when the appeal assessors visited. The help and support
provided by the MNDA in these appalling circumstances was essential and invaluable.
I dread to think what could have happened without it.
important aspect of the MNDA’s work is the funding of research into the causes
and treatment of MND, and possible cures. This is a cruel,
truly horrible disease for which improved therapeutic treatment and a cure are
desperately needed. Over the course of a year and a half I
looked on helplessly as a lively, highly intelligent, active person declined into
someone who was hardly recognisable as her former self, desperately trapped in
a body which would no longer function. At
the end of November 2017 Liz wrote “This disease
is terrible. I cannot think of anything
worse. It savagely and relentlessly destroys one bodily function after another.
It gradually takes away the ability to participate in activities one has
previously enjoyed. It takes away one’s personal dignity and ability to manage,
and controls one’s life. It engenders fear of the future and of being able to
cope.” In the end she struggled on for just over another year until January
2019, when she died quietly and suddenly, and thankfully not from the choking
fit that she had so greatly feared.
The Motor Neurone Disease Association therefore plays a vital role in helping and supporting people who are afflicted with the disease, and their carers, and in funding research into treatments. Longstanding members and supporters of this Choir may recall that Eileen Vesey, the wife of our founder, died after a long struggle with Motor Neurone Disease. That was in 1987. There has been some progress since then, but not enough. There is still very little that can be done to alleviate the symptoms and a cure is a long way off. The MNDA is a charity and its important work is financed by legacies, donations and the efforts of fundraisers. It receives no money from the government or the NHS. Please help them to help people like Liz – and Eileen – and to move closer towards finding a cure by donating generously this afternoon. Thank you so very much.
Many thanks to the Thanet Festival Choir who have selected Motor Neurone Disease Association as the beneficiary of their Carol Concert on Saturday 14th December at 3pm in Holy Trinity Church, Broadstairs.
This promises to be a delightful afternoon and we hope many of our supporters are able to attend.
Unfortunately our 4th Coastal Walk to D’Feet MND has been postponed until Saturday 3rd October 2020. We hope the Corona Virus Pandemic will then be over. We will be redesigning our posters as soon as we know we are able to hold the walk.
There will be three walk options.
A long walk (approx. 24 miles) Whitstable to
A medium length walk (approx. 13 miles) Minnis
Bay to Broadstairs.
A short walk (approx. 6 miles) Margate to
There is an entrance fee of £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance. Only registered walkers can walk and they must wear the tee shirt for insurance purposes.
Each walker is requested to find sponsorship to support people living with MND in East Kent. There is no obligation to raise sponsorship but all support is greatly appreciated.
If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent. Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/team/coastalwalk2020 so we can keep track of the total funds we raise.
This project began with a specific objective which is shown below in blue text, however Covid 19 has played havoc with our fund raising activities. Our fundraising is currently down in excess of £10,000 and all funds raised currently have to be available to maintain the services we provide to people living with MND in East Kent.
Since September last year I have managed to ride 612,000 of the one million metres target I committed to cycle during my 75th year to raise funds for MNDA in East Kent. It was my hope to raise 1 penny for each metre ridden. To achieve this we had planned several events to support the project. needless to say these have all been cancelled due to Covid 19.
In view of these cancellations we have reduced our target from £10,000 to £2,500. If we are able to hold any supporting events before September 26th 2020, we will reconsider our target.
Thank you for reading and thanks for your support of the MND Association in East Kent.
Clive Hudson Group Leader MND Association East Kent
For some time now I have been staggered at the amount of time people living with MND need to travel for various services.
This came to head for me, when I heard a member recount how he has had a round trip of 7 hours plus some 2 hours waiting times. This struck a bell with me, as I often complain about how far we need to travel from East Kent to attend MNDA meetings.
Ideally no person living with MND should travel more than 1 hour from their home for any services and wherever possible multiple services should be available on a single visit
MNDA Million Metres was born, I have committed to cycle one million metres during my 75th year to raise funds for MNDA in East Kent. I hope to raise 1 penny for each metre ridden. These funds to be used exclusively to improve services for people living with MND in East Kent. Where long journeys are necessary, ensure they are as comfortable as possible.
Since this project involves raising awareness and campaigning as well as fund raising, I expect it to take more than a single year to achieve. The concept of MNDA Million Metres will be used until the objective is achieved. In the unlikely event that we raise more funds than necessary for the project then any surplus will be used for research into a cure for MND.