On line Support Meeting

We will be holding an on-line support meeting on Wednesday 15th July at 11am. We will be using Zoom, you can download the app at https://zoom.us/support/download

If you are living with MND or have been affected by MND, you are very welcome to join us.

We very much hope this meeting will be a success and we will consider further meetings if there is demand. We feel it might be possible to have meetings for specific activities, such as music, films, books or indeed anything for which there is demand from members.

If you would like to attend on Wednesday 15th July please send an email to webmaster@mnda-eastkent.org.uk or telephone 01843 579941.

Chair for East Kent Group of MNDA

Our current chairman is standing down in September and we are seeking a volunteer to fill this role.

As Branch Chair, you will:

• Ensure continued delivery and development of our local work to support people with MND and their families

• Plan, prepare for and facilitate committee meetings
• Ensure appropriate decisions are made in a timely way when required
• Support Branch volunteers in planning and coordinating Branch activities
• Ensure Branch volunteers are aware of and follow the Association’s policies and procedures
• Induct and mentor new volunteers
• Work in partnership with staff to recruit new volunteers
• Act as an ambassador for the Association and as a host at Branch events.

This is an excellent opportunity to develop utilise your leadership skills and get involved with your local community. We are looking for someone reliable, warm and empathetic with the ability to motivate others. Leadership skills and experience of chairing meetings would be an advantage, along with good organisational and listening skills.

The group Chair will usually work for approximately 7-10 hours a week and facilitate on average 6 committee meetings a year and be involved in perhaps another dozen meetings during the year.

You’ll be inducted into the role and informed about the Association. As part of this, you will receive e-learning, face-to-face training and mentoring.

You can apply for this role here or you may contact chair@mnda-eastkent.org.uk.

Special Appeal for Funds

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

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

Reculver Fun Run

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.

  1. A 10K run Starting in Minus Bay running to the Reculver Towers then Back again to the original start point.
  2. 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 purposes.

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.

To register for the run, please visit https://mnda-eastkent.org.uk/ReculverTowerRun/, complete the form, then follow the link to Just Giving to pay your entry fee of £10.

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 want to make a donation in support but not register please visit https://www.justgiving.com/fundraising/mndafunrun

Should you experience any difficulties please email 2020reculvertowersevent@gmail.com

The route is shown on the poster below.

The sponsorship forms, posters and flyers can be downloaded below:

Sponsorship Form download PDF poster Jpeg Poster

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.

Carol Concert

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.

Thanet Festival Choir – conducted by Clifford Lister.

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.

Elizabeth

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.

The other 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.

Hazel Halse

4th Coastal Walk to D’Feet MND

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.

  1. A long walk (approx. 24 miles) Whitstable to Broadstairs.
  2. A medium length walk (approx. 13 miles) Minnis Bay to Broadstairs.
  3. A short walk (approx. 6 miles) Margate to Broadstairs.

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.

To register for the walk, please visit www.mnda-eastkent.org.uk/walk2020 , complete the form, then follow the link to Just Giving to pay your entry fee of £10.

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.

If you want to make a donation in support but not register please visit our http://www.justgiving.com/fundraising/coastalwalk2020

Should you experience any difficulties please email webmaster@mnda-eastkent.org.uk

The route is shown on the map above.

Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:

24 mile walk training programme download PDF

11 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

If you are able to display a poster, we would be grateful if you could print a copy and display it.

We thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent