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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

MNDA Million Metres

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.

I believe no person living with MND should travel more than 1 hour from their home for any services.

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 campaign for and achieve travelling of less than one hour. Where is necessary it exceeds one hour, the journey is made 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.

Please support this project either by donating funds via JustGiving at https://www.justgiving.com/fundraising/mndamillionmetres you can also see the latest updates here.

You can also join our team and raise more funds at https://www.justgiving.com/team/MNDAMillionMetres

Thank you for visiting this page, updates will be added to the JustGiving page usually each week.

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

The Ruby Walk to D’Feet MND took place in Canterbury on Sunday 6th October.

Under lowering skies, we hoped for a period without rain and our prayers were answered and our walk went ahead without a single drop of rain.

Brian and Hilary

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

Brian and Hilary hoped that 40 walkers would walk for 40 minutes and raise £40 in sponsorship, a target of £1600.

54 Walkers turned out on the day, walking for 40 minutes around the athletics track at Lifestyle Fitness in Canterbury, raising the astonishing sum of £3,113 in sponsorship.

The event started with a group photograph of all the Walkers by the Kentish Gazette, which we hope will be published in their next edition.

Walkers ready to start

Walkers came from all parts of East Kent and some walkers travelled from as far as the Isle of Sheppey.

Huge thanks to Brian and Hilary for organising this excellent event,  especially thanks to all 54 walkers who jointly raised £3,113 in sponsorship to date, a fabulous amount which will be used to support people living with MND in East Kent and to contribute towards researching a cure for this devastating disease. 

We would also like to thank Lifestyle Fitness for allowing us to use their track and to Kentish Gazette and the KM Group for their support and especially to everyone who contributed monies towards this great fund-raising event

If anyone has any sponsorship remaining to be paid, please send your cheque made out to MNDA East Kent to 171 Percy Avenue, Broadstairs, Kent, CT10 3LE or alternately to Just Giving at https://www.justgiving.com/fundraising/rubywalk2019  If you use the Just Giving Link please indicate this is sponsor monies for the Ruby Walk.

Anyone wishing to donate can also use the Just Giving link above.

You can see Brian and Hilary give an interview to Kent Online.  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.

Eastern Regional Conference

Saturday 12th October 201

Crowne Plaza Docklands Hotel

An excellent conference with a good mix of MNDA staff and volunteers who had travelled from all parts of the Eastern Region. 2 members of the East Kent group attended. Although we are in the Southern Region, we attended this conference as it was much closer than our own regional conference in Exeter.

The conference was moderated by Richard Coleman the Chairman of our Trustees. After welcoming us to the meeting, Richard introduced our first speaker Chris James, Director MND Association.

Chris started by joking about the last time he had visited Docklands, saying how much more pleasant this experience was compared to swimming in the docks to raise funds.

Chris then spoke about the Association over the years in this our 40th anniversary year.

The association was founded by a group of volunteers in 1979, little can that group have imagined what they would achieve over the next 40 years.

In 1980 the first research project was undertaken, and research activities have grown to some £16 million currently.

1980 saw the first awareness week and in 1990 the first International Symposium was held in Birmingham with just 35 delegates, in Glasgow there were over 1300 delegates. Quite an astonishing achievement.

The MND Care Centre was opened in 1993, there are now 22 around the country. Sadly we do  ot have such a facility in Kent. This must change.

The All Party Parliamentary Group (APPG) on MND was formed in 2002, this parliamentary body is very influential and an important point of contact between the association and our law makers.

The ice bucket challenge in 2014 was not only a spectacular fund raiser but the more lasting legacy of the event is the greatly increased awareness of MND which has helped in fund raising ever since and will help long into the future.

The NICE guidelines on the treatment of MND were introduced in 2016.  At last a guide to what is good treatment and service for people living with MND, the ground breaking document was as a direct result of campaigning over many years by the association.

In 2018 we lost one of our staunchest supporters, Professor Stephen Hawking.  The remarkable man raised substantial sums for the association during his life and in death the auction of his wheelchair raised a whopping £290,000 for the association.

Now at the present in 2019 we are celebrating our 40th anniversary and much has happened since that inaugural meeting in 1979.

Our next speaker was Alex Massey, policy manager MNDA, who talked about Campaigning for change.

Two major areas were covered in a very short time.

Scrap 6 Months.

Currently the Department of Work and Pensions (DWP) are governed by a rule that states that fast tracking for benefits can only be allowed where a person has in the opinion of his clinician less than 6 months to live.

Since DWP assessors have no knowledge of MND, This haS led to the appalling situation where people living with MND have not been granted benefits and in some cases have been expected to retrain for other work. 

Our Association has determined to get this law changed. To achieve this there have been many strands of activity.

James Douglas addressed APPG (see https://www.mndassociation.org/get-involved/campaigning/take-action/scrap-six-months/scrap-6-months-stephs-story/  )

Madelaine Moon MP introduced a private members bill (see https://www.mndassociation.org/mps-show-their-support-for-our-scrap-6-months-campaign/ )

A petition with 55,000 signatures was handed into 10 Downing Street requesting the scrapping of the 6-month rule.

The team from MNDA delivering the petition to 10 Downing Street

Two things have subsequently happened which give great hope for the future, firstly the DWP have reviewed guidance to assessors which has made the system more accessible, secondly a review of the benefits system has been ordered and we hope this will lead to the scrapping of the 6 month rule for all terminally ill persons.

More information can be found at www.mndassociation.org/scrap6months

Act to Adapt

This campaign involves adaptive housing for people living with MND.  Adapting accommodation is costly, time consuming and people need immediate support.

Because of the costs involved local government is often not keen to act.  There are several elements to a solution:

National Government should:

  • Commit to ongoing central funding for Disability Facilities Grants (DFGs)
  • Review the means test for DFGs
  • Ensure 10% of all new housing is build to accessible and adaptable standards

Local Government should:

  • Implement a fast track, non means tested process for adaptations under £5000
  • Provide discretionary support for people with a terminal illness
  • Establish an accessible housing register

More information can be found at www.mndassociation.org/acttoadapt  

The next presentation was by John Gilles Wilkes and he spoke about what might happen over the next 40 years.  Some of this is near and will happen much is crystal ball gazing and may or may not happen.

What’s New

Technology has made amazing leaps in the last few years and many things are rapidly becoming possible including the following:

  • Voice banking has been made dramatically simpler by technology and much less time and effort is necessary, than just 2/3 years ago.
  • Non invasive ventilation technology has greatly improved.
  • Specialist (non-clinical) support will become available.  Such as financial and legal advice.
  • The association is developing improved support for children and Young people see https://www.mndassociation.org/support-and-information/children-and-young-people/young-carers-hub/support-for-young-carers/
  • Environmental controls have made it simple to control the heating lighting and other services in your home.
  • Accessible communications are becoming more common and easier to use with the benefits of predictive responses.

Coming Soon

Looking into the future, we might very well see developments in any of these areas:

  • Robotics
  • Artificial Intelligence
  • Walking with the mind
  • Telehealth
  • Power of positive thought
  • Exoskeletons

If it isn’t broke brief presentations from 3 aspects of MNDA.

  • Duane from the benefits advice desk a partnership with Citizens Advice Cardiff & Vale has helped many people with MND since it’s inception, to apply for obtain the benefits they are entitled to. More info https://www.mndassociation.org/support-and-information/our-services/benefits-advice/
  • Mark Gately from North West Kent Branch spoke about the activities of his branch and the services they provide to local people living with MND.
  • Christian a service user talked about the service a user might expect from MNDA, including Kings MND clinic, Benefits Advice Service, Quality of life Grants, Continuing Health Care and Personal Health Budget (NHS).

The final presentation was a research update by Sadie Vile.

Sadie talked about the research team and how projects to fund were decided upon.

Research information is provided in many ways, through the web site, information sheets, Thumbprint, MND research blog and newsletters.

We fund world class research and currently are funding 82 projects.  The number of research projects have risen from 1 in 1980, to 8 in 1996 and to 82 in 2019.

Research Links

Research we fund

For a full portfolio of the research we currently fund

                www.mndassociation.org/research-we-fund

Our research strategy can be found at

                www.mndassociation.org/our-research-strategy

Take part in research

Find out which research studies you can take part in

                www.mndassociation.org/take-part-in-research

Join the MND Research List to receive new opportunities to take part in research directly into your inbox

                www.mndassociation.org/mnd-research-list

What’s new in MND research

Subscribe to our monthly newsletter to stay up to date with what is going on in the world of MND research

                www.mndassociation.org/mnd-research-newsletter

Read our MND Research Blog for no scientific research articles

https://mndresearch.blog

Find out what was discussed at the latest International Symposium on ALS/MND, and watch interviews with world leading researchers

                www.symposium.mndassociation.org/symposium-live   

Clinical Trials

For information on Clinical Trials in the UK and worldwide, please visit

                www.mndassociation.org/treatment-trials

Support Meeting – Battle of Britain Memorial

We are delighted our next Support Meeting will be at the Battle of Britain Memorial, Capel Le Ferne on Saturday 19th October.

The meeting will start at 11.00. We will enjoy tea, coffee and cake

It promises to be a great meeting and we look forward to a good turnout and of course wonderful weather.

The address is The Hunters Lodge, Battle of Britain Memorial, New Dover Road, (B2011), Capel Le Ferne, CT18 7JJ

Everybody affected by MND or has been affected by MND is welcome.