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.
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.
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.?
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.??
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.
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.
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)
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.
“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.”
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.