Category Archives: Campaigns

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

MND Patients Meeting at Westminster – 28th February 2018

Many MND patients, families and friends plan to meet  at 11 AM on Wednesday 28th February in Parliament Square directly opposite the Houses of Parliament.

The objective of the meeting is to get the Department of Work and Pensions to cease reassessment of patients with MND for  Employment Support Allowance (ESA).

This is an objective every member of our association desires but as ever there are many ways to go about securing our objectives.  It is useful to read Sally Light’s blog on the way the association is approaching the objective.  Follow this link to read Sally’s blog

Background to MND Patients dispute with the Department of Work and Pensions Motor Neurone Disease (MND) Is a progressive and terminal neurological condition in 100% of cases. It takes away an individual’s ability to use their hands, arms and legs, to talk and swallow and ultimately to breathe. 50% of those diagnosed die within two years of diagnosis, 33% within 1 year.
Employment Support Allowance (ESA) is a benefit to replace the income you lose when a disability prevents you from working. Given that recent research showed that life for people living with MND costs on average an extra £12,000 per year (and that is before loss of earnings), ESA is a vital income supplement.
To receive ESA people must undertake a “work capability assessment”. This is not linked to a diagnosis. However, over 90% of people living with MND who undertake the “work capability assessment” are deemed not fit to work and go onto the higher rate.
People receiving ESA are subject to reassessment. But MND NEVER improves. It only gets worse.
So there is absolutely no need to reassess. The process causes unnecessary stress to individuals and their families who should be focusing on the days they have left rather than fighting the system. In addition, it is a waste of public money.
From October 2017 NEW claimants will not have to be reassessed once they are on the higher rate.
However, an estimated 600 people living with MND already on higher rate ESA remain subject to reassessment. This is CRUEL and UNJUST and the practice must be ended.
@MNDPatients are angry at.…
1) the TIME this has taken to be resolved . Given the nature of the disease many will have passed away since a October 2016 promise by the then Minister for Disabled People, Penny Mordaunt MP.
2) the latest Department of Work and Pensions (DWP) “excuse” for the delay. They blame it on “complex operational and systems issues” for which, clearly, people living with a terminal and progressive condition cannot be to blame. The burden MUST be taken away from MND patients.
Our RECOMMENDATION is that a “work around” is found without delay. Rather than complete yet another long form, why can’t affected people simply contact their DWP office, tell them they have a diagnosis of MND and supply contact details for a health professional – GP, neurologist, specialist nurses etc to confirm their diagnosis. The estimated 600 is by no means a huge number in the universe of ESA claimants. The stress on MND patients will be immediately reduced and civil servants need not trawl through 600 long forms but simply make brief telephone calls or send short emails to marry up the work capability assessment with the diagnosis.
For similar reasons, we are also demanding that similar exemption criteria are applied to reassessments for Personal Independence Payments (PIP)/Disability Living Allowance (DLA) for those with terminal, progressive diseases including MND.

Carers Strategy Petition

Carers were asked to contribute to a call for evidence for a Carers Strategy in early 2016. Many carers and carers organisations filled in the questionnaire and wrote reports on the issues for carers and how to solve them.

Katy Styles, Rosie Duffield MP and Judy Keay at MNDA Parliamentary Reception

Everyone expected the Carers Strategy to be published at the end of 2016. We waited throughout 2017. An election happened. The Minister changed. We continued to wait. By October I decided that I needed to do something to get government talking about the Carers Strategy again. I was quoted twice in parliament as being very annoyed that carers were still waiting and our voices were unheard. The Minister then made an announcement in November that there would be an Action Plan. That Action Plan was due in January. It never came. We were on our next Minister.

I created a petition on the Government’s own petition website to get Government to publish the Carers Strategy. I even took an online course with UK Parliament to learn how to do this. My petition went up on the website on 22nd January. It runs for 6 months. To get a response from Government I need 10,000 signatures. To get a debate I need 100,000 signatures. But no matter how many signatures this petition attracts it has got people discussing carers and the lack of a properly thought through strategy.

So far Kent Carer Support Organisations have supported this petition through their networks, as have many other carers organisations throughout the country.

Have your say

MPs have shared the petition on social media and there have been messages of support and encouragement.

Why did I do this? As someone who meets many carers it struck me how few knew their rights, few identified themselves as carers and few were claiming benefits they were entitled to. A proper strategy should address these issues.

If you feel you can support this, please click on the link and sign up and share. Thank you.
https://petition.parliament.uk/petitions/209717

Katy Styles – Carer, MNDA Trustee and MNDA East Kent

Silence Speaks at QEQM Hub

Silence Speaks is the Association’s activity to raise awareness of speech loss in over 80 % of people living with MND. During October people take up the challenge of raising awareness of the issue by running a variety of events, these include sponsored silences, silent discos, silent quizzes and lots more.  

Chrissie Batts, East Kent Hospital Trust’s Specialist Nurse undertakes outreach to hospital

Katy Styles Mark Styles Chrissie Batts and Judy Keay

staff at all three trust hospitals to raise awareness of the support people living with MND will need with their carers should they attend or stay in hospital. 

As part of this programme, Chrissie together with Judy Keay, Association Visitor Coordinator and Katy and Mark Styles went to the Queen Elizabeth the Queen Mother Hospital in Margate on Friday 20th October to explain about motor neurone disease but with the added pressure of doing this silently. These awareness activities are held weekly within all three hospitals and staff from all departments are encouraged to pop in and see the presentations on those days.  

Chrissie Batts Mark Styles and Judy Keay

Together Chrissie, Judy, Mark and Katy had downloaded type to speech apps on iPhones and iPads, creating key phrases to explain what we were doing and what help people in hospital with MND many need. We used pads and pens, laminated letter sheets and pre-printed leaflets from the Association.  

We met staff from all different departments with very different duties who were all very interested to learn about speech loss in MND. Staff said that as we were not speaking it made them not want to speak. Others commented that it was really important to highlight this issue and asked what they could do to support someone with MND.

During the session, Katy Styles awarded Chrissie with an MND Association Extra Mile Award

Sally Smith and Chrissie Batts

for her dedication to supporting the people living with MND in East Kent. Extra Mile awards are awarded to staff who have gone above and beyond to support people living with MND, their families and carers. Katy had pre-recorded a short speech to explain to Chrissie why she was receiving the Award. The Chief Nurse, from the East Kent Hospital University and Foundation Trust, Sally Smith attended the presentation and congratulated Chrissie.

 

 

All Party Parliamentary Group on MND Reception

Together with branch and group members of the MND Association from around the country, Clive Hudson chair of the East Kent Group and Judy Keay, Association Visitor Coordinator attended the Parliamentary Reception in London on 17th October, 2017.

Katy Styles Rosie Duffield MP and Judy Keay

Also attending were Katy and Mark Styles, campaigners for East Kent Group. At the Parliamentary Reception, the All Party Parliamentary Group (APPG) on MND launched their report on PIP – Personal Independence Payments. The report highlighted the problems that people living with MND are having with reassessment of their benefits.  

Powerful speeches were given by Chris Evans, the Vice Chair of the APPG on MND, by Rob Owens a person living with motor neurone disease, Patron of the MND Association Charlotte Hawkins who spoke about her father who had died from MND and the need for equipment and benefits to be timely. Finally, the Minister of the Disabled, Penny Mordaunt spoke about her department and what it was doing to change how information on people was gathered and used. 

Many people had emailed their MPs to attend the event, over 50 MPs and Peers attended on the day. Rosie Duffield MP for Canterbury and Whitstable attended the event to meet Katy, Mark and Judy who live in her constituency.  

MPs will be asked to write to the Minister, Penny Mordaunt to highlight the issue of reassessments of benefits for people living with progressive, degenerative diseases.  

Another big part of the day is for people living with MND, their families and carers to meet with other supporters and catch up.

Katy said “It’s so important that people living with MND, their carers and families, together with Association supporters meet with MPs and share their personal stories. Every time someone shares a story this makes a big impact on an MP or Peer. If we keep sharing these

Read more about the event, and take a look at some of the social media highlights of everything that happened. You can also catch up with the speeches from the day and watch our video of volunteers speaking to MPs.

 

 

KM Charity Forum

Mark Styles receiving The Gold Charity Mark from Barbara Martin

The Kent Messenger Charity Group held their annual forum at The Mercure Great Danes Hotel in Maidstone on Friday 13th October.  The forum recognised work of charities and schools for their hard work and dedication.

Mark styles attended from The East Kent Group of MNDA, who are  the Kentish Gazette Charity of the Year 2017.

Mark Styles collecting an award on behalf of Clive Hudson from Barbara Martin

MNDA East Kent was awarded A Gold Charity Mark Award, which was received on our behalf by Mark Styles.

Mark also collected a Brain and Brawn Triathlon Award on behalf of Clive Hudson, who for health reasons was unable to be present on the day.

Mnda East Kent would like to thank KM Charity Team and the KM Group for all the support we have received during 2017 as Kentish Gazette Charity of the Year.

Clare Rozier starts her silence Tonight, at 7pm

On Sunday 15th October at 7pm until Tuesday 17th at 7am I will be doing Silence Speaks in memory of my amazing Dad (David Ironmonger).

David Alan Ironmonger

My dad was such an amazing man, always smiling, loved life and everybody loved him. In 2016 Dad was diagnosed with MND, which was a great shock to himself and the family. Over the year Dad lost control of his legs, arms, couldn’t feed himself, and it got so exhausting for him to talk. He had carers 3 times a day to hoist him out of bed, wash, shave, brush his teeth, etc. 

My Mum, Brother,  Husband and myself  would also help with his care. We would take him out in his electric chair and mobility car so he could enjoy the places he loved to go and see. My dad was so brave and battled through this cruel time and would always be smiling. 

Sadly on July 16th 2017, Dad lost his battle to this cruel disease. Myself, brother and my mum were all by his bedside when he died, and he would still try and smile right to the end. 

I miss my Dad so much and think about him everyday.  

I am doing this as I have a CHOICE too.. My Dad Never had a CHOICE. 

I would love to be able to help someone else with MND by raising money. 

I so wish there was a cure for this wicked and cruel disease.

Please support me by visiting www.JustGiving.com/clare-rozier1 donating what you can afford to help people living with MND. 

Thank you for reading and huge thanks to all donors.

Clare Rozier

To find out more about Silence Speaks please visit https://www.mndassociation.org/get-involved/fundraising/doyourownthing/silence-speaks/

Awareness raising at Dover College

On Monday 9th October I attended morning assembly at Dover College to talk about motor neurone disease and the MNDA.

The college had lost a much loved member of staff to MND and the students have decided to support MNDA through the school year and many events are planned.

The presentation was about MND/Kennedy’s Disease, and how the MNDA supports people and families affected by these diseases.

The presentation focussed on the celebrities the student might know of,  who support MNDA such as Professor Stephen Hawking, Benedict Cumberbatch, Charlotte Hawkins, Eddie Redmayne and Stuart Broad.

Also featured were inspirational people living with MND/Kennedy’s Disease, who do everything they can to raise awareness of MND and to raise funds for MNDA.  People like Mark Styles who was instrumental in getting Kent County Council to be the first council to sign the MNDA Charter, Jason Liversedge who despite being in a wheel chair managed to ascend Snowdon and also to abseil off the Humber Bridge and EyeGazeArtist, Sarah Ezekial who creates wonderful works of art using only her eyes.

Thanks to students and staff at Dover College for supporting MNDA and we look forward to hearing about your future activities.

Clive Hudson

Charity notice board at Dover College

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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