Category Archives: Campaigns

Campaigns are crucial to getting our message about Motor Neurone Disease to Government, health organisation and the public.

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.

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.

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.

DarrenwithCarp
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 http://mnda-eastkent.org.uk/wordpress/?p=1849 for full details.

AnnePomeroy
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 http://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 http://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

 

MND Association AGM 2016

Clive Hudson, Mark? and Katy Styles attended the annual conference of the MND Association held in Derby on Saturday 10th September.
The meeting was opened by Chairman of the Trustees Alan Owen, who introduced Sally Light CEO of the MND Association.
Sally light reflected about the highlights of 2015/2016, featuring? the Biggest loudest and scariest?Events during the period.
The Biggest was the Shortened Stories campaign with huge posters being displayed around the country.
The Loudest event was Rave and Ride a very loud dance music event associated with cycling.
Scariest event being on stage to welcome The International Research Symposium, addressing 800 of the world’s best researchers.
The whole speech can be seen at http://livestream.com/eventstreamingcompany/mnda?follow the Reflections 2015/6 link
Chris Wade spoke about How Volunteers and Staff of MND Association change lives his speech can be viewed at http://livestream.com/eventstreamingcompany/mnda?follow the How Volunteers and Staff change lives.
You can view all the sessions and speeches,?at the Association?s live streaming?link http://livestream.com/eventstreamingcompany/mnda
The highlight of the conference is always the research talk. This year we were lucky enough to hear Dame Professor Pamela Shaw, who runs SITRaN, in Sheffield.
SITRAN is an excellent example of a care centre and clinical research lab in one.? Full details can be found here http://www.sitran.org
Dame Pamela gave an excellent speech which can be seen in full at http://livestream.com/eventstreamingcompany/mnda?follow the 2016 Keynote Speech Link.
The great thing about attending the conference is being able to meet old and new friends, to put faces to the names of staff that you have contact with throughout the year and it also gives you a chance to reflect on what has been achieved throughout the past year, in terms of care and support, research and campaigning and raising awareness.
East Kent Group attended breakout sessions on corporate fundraising and campaigning and raising awareness.
New trustees are also announced at the conference. Katy Styles, was one of 13 people who put themselves up for election. It was a strong field of candidates and those that were elected will add their strengths to the board.