Category Archives: Uncategorized

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

Quiz – Wrotham Arms

A quiz will be held on Thursday November 21st at The Wrotham Arms, Ramsgate Road, Broadstairs, to raise funds for MNDA East Kent. The Quiz will start at 7.30 prompt

MNDA East Kent is looking to enter 2 tables of 6 for the quiz, please email chair@mnda-eastkent.org.uk to book a place.

Entry is £5 per head, nibbles will be provided and teams may bring any extra food they wish.

There will be two games, winners of which will receive a prize. There will also be a raffle.

We look forward to seeing as many supporters turning out to support the Wrotham Arms who have been a fantastic supporter of MNDA East Kent for many years.

Ruby Walk to D’Feet MND

Can you WALK for 40 minutes and can you raise £40 sponsorship?

If the answer is yes to both please join us in Canterbury on Sunday 6th October. The venue is Lifestyle Fitness, Canterbury Campus, Knight Avenue, Canterbury, CT2 QA and the time is 2pm.

This year is the 40th anniversary of the Motor Neurone Disease Association. To mark this event Brian Sackett and his sister Hilary Smith are organising a Ruby Walk to D’Feet. Both Brian and Hilary lost partners to MND, so it is a subject very close to their hearts.

Hilary Smith and Brian Sackett

Registration details are shown below, if you register on the web site, you will be sent an electronic sponsorship form which you can print, if you chose to register with Brian Sackett he will send you a sponsorship form.

Every sponsored walker will receive an MNDA tee shirt and upon completing the 40 minutes, you will receive a souvenir medallion of the day.

You can register for our walk at http://mnda-eastkent.org.uk/rubywalk

You may donate to the Ruby Walk to D’Feet MND at https://www.justgiving.com/fundraising/rubywalk2019 all monies donated will be used to support people living with MND in East Kent or to contribute towards research for a cure.

Brian and Hilary gave an interview to Kent On Line. It is very moving and worth a read. https://www.kentonline.co.uk/canterbury/news/i-thought-it-can-t-strike-our-family-again-how-wrong-was-i-210322/ this link also takes you to the KMTV interview.

Coastal Walk to D’Feet MND

The third Coastal walk to D’Feet MND took place on Saturday May 18th.  There were 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.
Walkers at the Margate Start Point

Some 60 walkers walked on the day.  The weather was fair and the walk most enjoyable.  The walkers from Whitstable started at 7.30 am, those from Minnis Bay at 11.30 and the final group from Margate at 1.30pm

All walkers finished at the Wrotham Arms, Ramsgate Road, Broadstairs, between 2 and 4.30pm. Medallions were presented to all walkers who completed their walk. 

The Finish Line

Adrian Powell made a brief speech of thanks to all walkers, the organisers and of course our sponsors.

Refreshments were provided by the Wrotham Arms and excellent they were, thanks to Jackie and her team at the Wrotham Arms.  Soothing drinks were also enjoyed from the bar.

As of June 12th, the Walk has raised £6,500 including gift aid.  A fantastic result which means over 3 years we have raised over £25,000 to support people living with MND in East Kent and contribute towards research for a cure for this devastating disease.

As a direct result of our walk in 2018, MNDA East Kent have been able to fund the purchasing of a piece of equipment to allow the respiratory nurse to be mobile in the MND clinic at William Harvey Hospital in Ashford. This will make life much easier for patients with MND visiting the clinic.

We will be announcing details of installation on our web site, when the equipment is installed.

Huge thanks to our sponsors Greenwich Kitchens and Premier Signs and Graphics; to The Wrotham Arms; to all walkers; to everyone who collected sponsorship, and everyone who gave generously.

Spike is no ordinary cat.

Spike

This month he has been raising awareness of MND and Kennedy’s Disease as he is a finalist in the National Cat of the Year. He is in the Better Together category where it is all about how he and his owner, Mark Styles look out for each other.  

http://www.itv.com/news/meridian/update/2017-06-07/why-is-this-loyal-feline-friend-up-for-a-national-award/ 

Spike, a 17 year old ginger and white moggy has been in the local paper -the Kentish Gazette, videoed and photographed by Cats Protection and on the local news programme – Meridian. 

Spike’s category is one which is decided by a public vote, so if you would like to vote for him after 30th June go to the www.facebook.com/catsprotection 

Winners will be announced on 3rd August at the Savoy, London.

 

 

Consultation: Government?s Work, Health and Disability Green Paper?

The Association has been working on the Government?s major discussion paper?outlining their ideas for getting disabled and people with long-term conditions into work. People living with MND and those affected by it have been surveyed for their views on the proposals. 144 people responded to the MND Association?s survey.

Alongside this there have been two engagement events organised by the Department for Work and Pensions (DWP) and the Disability Benefits Consortium (DBC) of which the Association is a member. One was for the policy staff at the Association and Mark and I attended on behalf of people with lived experience. We were able to discuss with civil servants directly and discuss and challenge their thinking.

The Association will be submitting a response by 17th February. This will be on the main Association?s website.

2016 in review.

2016 has been an interesting and successful year for MND Association East Kent Group.

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Campaigns Contact volunteers Greg Broadhurst (Manchester Branch), Colin Hardy (Northumberland Group), David Setters (East Surrey Branch) and Katy Styles (East Kent Group) were joined by Helen Setters and Mark Styles at the lobby.

The year started with a party at the Wrotham Arms in Broadstairs, followed in very short order by a Support meeting in Folkestone and a visit to Westminster where 6 people affected by MND addressed some 42 Parliamentarians.

Young Carers Awareness Day was also in January, which was followed by the Burns Night Supper at BinElla in Faversham.

Mark and Katy Styles spoke to the Psychology Society at the University of Kent on Tuesday 23rd February.

Campaigning Toolkit

 

During April The Campaigning Toolkit, the brainchild of East Kent’s?Katy Styles was launched, A Masquerade Dinner in Tenterden raised almost ?10,000 and the?South Coast Road?Trip tee shirts went on sale, together with announcements of the events in East Kent.

A brilliant Spring Lunch was held in May and the press release for the South Coast Road Trip was sent to all media outlets.

June was the month of the South Coast Road Trip with 19 events in 17 days as Clive and Lynn Hudson travelled by public buses from Broadstairs to Land’s End, raising over ?10,000 and also creating great awareness of MND in the process.

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Sally Light with Signed T Shirt

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Herne Bay Clock Tower

The Clock Tower in Herne Bay was lit up with MND colours and MND awareness day and The Podplus 5K run was yet again a success was a successful run raising funds for MND in East Kent.

Campaigning were busy at Parliament for a Carer’s Week Reception representing pwMND and their carers.

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Daren with enormous carp

In August Summer was in the air with great music at the Broadstairs Summer Hop at The Pavilion, which followed on into the evening at the Wrotham Arms.? Daren Edwards was catching enormous fish in France and the signed road trip shirt went on display at David Niven House.

Katy Styles addressed The National Council for Voluntary Organisations (NCVO)? Campaigning Conference on September 3rd, being the only volunteer to address the meeting.? On the same day Judy Keay attended Project Respect, which?is the MND Association?s Equality, Diversity and Inclusion Strategy ? and?all members are encouraged to help shape it.

Clive Hudson, Mark? and Katy Styles attended the annual conference of the MND Association held in Derby on Saturday 10th September.? Please see https://mnda-eastkent.org.uk/wordpress/?p=1849 for full details.

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Anne Pomeroy

Anne Pomeroy walked 100KM along the Thames raising ?1650.93 for MND Association East Kent.

The Co-op run from River to Mill Hill was on 30th September.? The run followed the diagnosis of MND given to local lady Linda Clarke.? The run raised over ?1000 for MND. See https://mnda-eastkent.org.uk/wordpress/?p=1876 for more information.

We held a volunteer recruitment day in Canterbury in early October, the event was an interesting experience and we learned much about how to present any future recruitment day. Unfortunately it was a foul day and we were not successful in gaining any new volunteers.

Judy Keay, Chrissie Batts and Mark and Katy Styles attended a Parliamentary Reception on October 18th, representing the East Kent Group.

Katy Styles, Mark Styles, Julian Brazier MP, Chrissie Batts & Judy Keay
Katy Styles, Mark Styles, Julian Brazier MP, Chrissie Batts & Judy Keay

They all spoke with?Julian Brazier, MP for Canterbury and Whitstable who attended and promised to follow up the points made at the reception, and other MP’s at the reception. ?Mark and Katy also spoke to the Minister, Penny Mordaunt about their concerns .

During November we were encouraging people to complete a survey about the financial impact of MND further information https://mnda-eastkent.org.uk/wordpress/?p=1898

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Christmas Lunch

Our year ended by funding the installation of a hoist for Martin living with MND, making a contribution to our CEO annual appeal and enjoying a wonderful Christmas Lunch at Yarrow Hotel in Broadstairs.

 

 

 

Apologies for any errors or omissions please contact webmaster@mnda-eastkent.org.uk

 

A Fishy Tale

MND Association East Kent member Daren Edwards who lives with MND, is a keen fisherman and regularly visits France seeking to catch large carp.

On his most recent visit he caught the beauty shown below in a lake in the Champagne Region, it is a mirror carp and weighed in at 32 pounds and took over 20 minutes to land.

For those who appreciate the finer points of fishing, it was using a 15lb mainline with 3 Tiger Nuts as bait.? The temperature was 28C, difficult conditions but Darren had a great time.

DarrenwithCarp

Daren would like to thank MND Association for the financial contribution towards his holiday trip.