Category Archives: Awareness

AGM July 8th 2017

On Friday evening when we arrived at the hotel,  we had the opportunity to meet with some trustees and members of other groups, which was helpful in identifying some new ideas to work towards improving our activities in East Kent.

Saturday started with a short welcome speech by Alun Owen Chair of the Trustees of the Association.

Sally light then spoke of what we had achieved in 2016 and how we can help.  She used 2 excellent graphics for this and these are reproduced below.  These present the gist of her speech much better than any words.

Chris James spoke about the Association’s in complementing statuary services, collaborative working and the MND Costs Campaign.

Steve Bell spoke about the “What You Should Expect” an excellent small booklet giving brief details of what a pwMND should expect from the NICE Guidelines on MND and the Audit Tool to help assess how various bodies are doing in compliance with the guidalines.

We broke into groups which covered subjects like money for nothing fund raising, care update, the journey from awareness to action and local and regional finance.

We broke for lunch and the opportunity to look around the various stalls, we were particularly impressed by REMAP, a charity which makes custom made equipment to help disabled people live more independent lives.  Please visit www.remap.org.uk

The AGM followed, during which our own Katy Styles was elected as a Trustee and Richard Coleman was elected as Chair of the Trustees.

The keynote speech was  delivered by Professor Ammar Al-Chalabi.  This speech was one of the most impressive I have ever been present at and I recommend everyone to look at it here https://www.facebook.com/pg/mndassociation/videos/?ref=page_internal click the link to MNDA Research under All Videos.

Disability Hustings

Mark Styles interviewed at the hustings.

On Tuesday 30th May, 120 people from various charities attended a disability hustings event organised by the Disability Benefits Consortium. The MND Association is part of the consortium so attended with campaigners and staff from across the country. 

Minister for the Disabled, Penny Mordaunt (Con), Kate Green (Lab) and Baroness Sally Brinton (Lib Dem) were present. 

Mark Styles from East Kent Group was selected to ask a question about scrapping reassessments for people with progressive, degenerative conditions. Other questions were asked about social care and work for the disabled.

Please follow this link to go to inews for an article which features Mark Styles  https://inews.co.uk/essentials/news/disabled-voters-grill-election-candidates-nappy-suitable-substitute-night-time-care/

Currently MND Campaigns is running an e-action to get people to ask their General Elextion candidates for a commitment to scrapping reassessments. You can take part here. It’s easy and takes seconds to do.  

https://www.mndassociation.org/get-involved/campaigning-influencing/scrap-benefit-reassessments/

 

 

 

 

Kennedy?s Disease Day Makes History

On 24th March, the first ever Kennedy?s Disease Day ? specifically for people living with Kennedy?s Disease, their families and carers, together with researchers and healthcare professionals took place in Derby.??

The day was run by UCL, the MND Association and UK Kennedy?s Disease. UCL run the Kennedy?s Disease Clinic and research into the disease at the Institute of Neurology, Queens Square, London.??

Kennedy?s Disease is supported by the MND Association. It is a slowly progressive degenerative disease of the motor neurons and has many symptoms that people with MND would recognise, together with some they wouldn?t. It causes mobility, swallowing and speech problems as well as breathing problems.??

The day was all about explaining the research that is currently going on, the support available from the clinic, the work of the MND Association and specifically MND Campaigns and how the charity Kennedy?s Disease UK are raising money for research into the disease.?

The Kennedy’s Disease research team from UCL

Katy Styles addressed the audience, which?was believed to have the?largest number of people living with Kennedy?s Disease present at one time, anywhere in the world. She spoke about how the Association currently supports people living with Kennedy?s Disease, through the work of branches and groups, through support grants, the work of MND Education, publications available and how MND Campaigns had made a big impact on getting more decision makers to understand what life was like for people living with KD. UK Kennedy?s Disease founder Kate Hopps also spoke about their fundraising work and Eric Mager, spoke about the Facebook Group he had set up to support people with KD and their families ? KDRA.??

Everyone came away from the day determined that this would become an annual event and thinking how they could now get involved with fundraising and campaigning to raise awareness of this disease.??

Thanks?to the MND Association for helping support this day.??

More about Kennedy?s Disease UK can be found here.??

http://kennedysdiseaseuk.com/

@NHS Mark – East Kent Group Member, Mark Styles Curates Social Media Twitter Account For The NHS

During the week of 4th ? 7th April, Mark Styles, East Kent Group member curated the social media twitter account of NHS England ? called @NHS.

The idea of the account is that ordinary patients and NHS staff from across the country, get to tell their NHS stories for a whole week. They are able to post onto the twitter account from 8am to 8 pm each day.

Katy and Mark Styles

Mark, who is living with Kennedy?s Disease, used his week to explain about the disease to the followers of this account ? explaining about the work of the Kennedy?s clinic. Indeed, we followed him, through a typical research day looking at the exercises he does at the clinic and even saw him with the staff who ran the MRI scans he undertook. Other parts of the week Mark tweeted about the importance of his multi-disciplinary teams ? featuring photos of his healthcare professionals throughout the week. He also used the opportunity to explain about the new NICE guidelines for MND and the Association?s MND audit tools. He spoke about his campaigning in parliament and the importance of the MND Charter. Finally, on the last day he returned to London, showing the ins and outs of getting on a train in a wheelchair and reminding us all about the importance of good mental health.??

At the end of the week, the NHS account is passed on to the next person and a set of the best moments of the week are put together by the communications team.

Mark?s week can be seen here.??

https://www.england.nhs.uk/atnhs/curator-archive/mark-styles/

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Benefits advice service

Benefits Advice?

Following our successful pilot work we have now established a benefits advice service for people with and affected by MND in England and Wales. The service is available by telephone, e-mail and webchat*.

Telephone:??????????????? ??????????? ??0808 801 0620 (free to call)

E-mail and webchat: ??????????? www.mndassociation.org/benefitsadvice

The service is provided in partnership with Citizens Advice Cardiff and Vale and will:

Help users identify the benefits they may be eligible to claim and how best to claim them

  • Deal with complex benefits issues, including appeals against benefits decisions

Welsh speaking advisers are available on request.

*The telephone and e-mail services are available from 24th Apr 2017, the webchat service will go live later in the week.

You can either contact the service on behalf of your patients or simply suggest that they or their families/friends contact it direct.

As part of the development of the service we are looking at how best we can help people who cannot use the phone, e-mail or webchat complete benefits applications at home and how we can make the service available to people who do not speak English or Welsh.

 

Mark Styles is Curator for the NHS Twitter Feed this week.

Quotation taken from NHS Twitter Feed

“I have seen at first hand the power of talking about my lived experience of a rare disease.? By providing first hand testimony I am able to provide some of the facts behind the statistics.? Daily life may be becoming slowly more difficult, but this does not stop me trying to create change and making something positive out of my situation.”

Mark Styles – April 2017

Follow Mark at https://twitter.com/NHS

See marks NHS Curator Profile at https://www.england.nhs.uk/atnhs/curator-archive/mark-styles/

Katy is runner up at SMK Foundation Campaigning Awards

Congratulations to Katy Styles Campaigns Contact for East Kent Group of MNDA was recently honoured as runner up in the Health Category at the?Sheila McKechnie Foundation (SMK) Campaigning Awards.? We know how Katy works campaigning for MNDA and feel the award is thoroughly deserved.

In Katy’s words:

It came as a great surprise to have been nominated for a Sheila McKechnie Foundation (SMK) Campaigning Award in the Health Category for my campaigning for the Motor Neurone Disease Association.??

The Sheila McKechnie Foundation was set up in memory of Dame Sheila McKechnie. ?SMK is entirely dedicated to helping campaigners create positive and lasting social change.

On Thursday evening, we met with the other nominees for all sorts of campaigning categories to celebrate individuals who were striving to make the world a better place. It was inspiring to meet other campaigners and learn about their campaigns. Originally, we were meeting at the House of Lords but the meeting was rearranged to another venue. It seemed fitting to be celebrating the great good people do for one another on a difficult week for parliament.??

To find out I was a runner up for the Health category was the icing on the cake. Being with other campaigners who?understand how hard and difficult campaigning can be and being reminded that some campaigns take years was the encouragement we all needed. I even got to meet some of my own personal campaigning heroes.

Campaigning is all about being part of a team. In our MND Campaigns team we have incredible staff and volunteers. Together with members of the MND Association, their friends and family who all help by emailing, or posting campaign messages or speaking to councillors, MPs or healthcare professionals we campaign to make systems fairer for people living with MND and Kennedy?s Disease.? I hope they all see this nomination as recognition for us all.

Katy Styles March 2017

Download the full list SMK Foundation winners and runners up 2017 here

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Access to ?Personal Independence Payment (PIP) Survey

Copy of Email from Madeleine Moon MP,

My name is Madeleine Moon, I am an MP and Chair of the All-Party Parliamentary Group (APPG) on MND*. I lost my husband to a form of MND, so I know first-hand the impact the disease has on the individual and their families.

MND can have a significant financial impact on families and access to benefits is therefore really important. ?However, we know that some people with MND find it hard to access these benefits.

The APPG on MND has therefore launched an inquiry?into access to?Personal Independence Payment (PIP), a disability benefit for people aged under 65. ?We want to gather evidence of the experiences of people with MND so that we can help improve the system.

?Take The Survey
The deadline for the survey is Sunday 9 April 2017.

Please spread the word about the survey ? the more people with MND who share their experiences, the more likely we are to improve access for people with MND and their families.

Thank you very much.

Madeleine Moon MP

Chair of the APPG on MND

*The APPG on MND is a cross-party group of MPs and Peers with an interest in MND. The MND Association provides the secretariat to the Group.

PS If you would like a paper copy of the survey please contact Tina Downs on tina.downs@mndassociation.org.

IT’S A ?2,000 RACING CERTAINTY AT WEALDEN BUSINESS GROUP FUNDRAISER

It’s not often you come away from the races with winnings of more than ?2,000 – but that’s what happened on Friday!

Wealden Business Group, the networking organisation for small and medium sized businesses, staged a Race Night at the Little Silver Country Hotel, Tenterden on Friday (3 February) in aid of their charity-of-the-year, the East Kent group of the Motor Neurone Disease Association.

More than 60 people attended, and enjoyed an evening of eight filmed races and a fish & chip supper. When ticket and raffle sales and ?1-a-go betting proceeds were added up, the charity benefited to the tune of more than ?2,000.

East Kent MNDA chairman Clive Hudson thanked WBG members and guests for their support, while Wealden Business Group chair Justin Nelson commented: “It was a terrific evening, and a really fun way to raise money for a thoroughly deserving cause.”

The Group, which meets at the Little Silver every Wednesday for breakfast, business networking and presentations, nominates a charity each year. In the past five years, more than ?25,000 has been donated to local good causes.

For more information about the Group, log onto www.wealdenbusinessgroup.co.uk

  • Picture shows Clive Hudson and Peta Ashby of WBG, who organised the Race Night.

Reprinted from a press release by Wealden Business Group.

Huge thanks to everyone from the Wealden Business Group for organising this wonderful and enjoyable event, raising over ?2000 to support people living with MND, their carers and families?in the East Kent area.

 

Volunteering: In your words

Reprinted from MND Association Web Site
Campaigns Contact ? Katy Styles of MNDA East Kent

Our Campaigns Contact volunteer, Katy Styles, tells us her story about why she volunteers for the Association?

?The MND Association support people living with MND, but did you know it also supports those with Kennedy?s Disease, their carers and families.?But how much do you know about this rare disease?

Kennedy?s Disease is also known as Spinal Bulbar Muscular Atrophy. It is a rare disease and no one currently knows how many people live with it in the UK, so you may not have come across it as a volunteer or member of the Association. Kennedy?s Disease is a progressive neurodegenerative disorder which means that people with?it live with muscle wasting, mobility and breathing problems, swallowing and speech problems and a range of hormone problems.

My husband Mark was diagnosed with Kennedy?s Disease six years ago, until then?we had no idea that it ran in his family. He has gone from being physically active to depending on crutches and a wheelchair to get around. He uses a breathing machine at night to support his weakened chest muscles. He also?has a modified diet as he has problems choking. In addition, he is monitored regularly for diabetes, a complication of Kennedy?s Disease. Kennedy?s Disease has many aspects people living with MND would recognise.


When we first joined the Association, little was spoken about Kennedy?s Disease. I met volunteers and staff who have never heard of the disease and if they had they were not aware of the problems someone with Kennedy?s would face. ?Mark and I knew then that we needed to volunteer with the Association to change this and through volunteering we could ensure that Kennedy?s Disease would be talked about and better understood.

I never realised when I first volunteered for the Association what difference raising awareness of the disease would make. Now there is a dedicated clinic supporting people with Kennedy?s Disease with a research programme. We?ve mentioned Kennedy?s Disease in Parliament and in March the Association, the clinic and UK Kennedy?s Disease (a charity set up to fund research into Kennedy?s Disease) are holding the first ever Kennedy?s Disease patient?s day. Things have come a long way in the four years we have been involved with the Association.

What can you do as a volunteer to support someone with Kennedy?s Disease?

  • Support anyone with Kennedy?s as you do with MND
  • Signpost them to the new clinic at Queens Square and encourage them to sign up to the Patients Register
  • Show them the MND pamphlets and literature provided by the Association, as these also apply to people with Kennedy?s.?

For more information about Kennedy?s Disease please download information sheet 2B from our publications list.