Please follow this link to read this report Predicting the future for ALS
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
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.
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
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.
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.
Mark?s week can be seen here.??
“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/
Tube feeding is sometimes suggested in MND.? If you want to learn about tube feeding the following link takes you to a web site, which is very good and shows all?the options available.
My husband is disabled. One day I stood up and made MP’s listen to our story.
My husband?s body is slowly failing him. He has a rare progressive form of Motor Neurone Disease called Kennedy?s disease and has gone from being physically active to depending on crutches and a wheelchair to get around. At night he breathes with the help of a machine that supports his weakened chest muscles.
Few people have heard of Mark?s disease, let alone understand what it is like to live with it. We wanted to change that, so Mark and I decided to volunteer for the charity Motor Neurone Disease Association as campaigners. We raise awareness of the disease and try to create change at a local and national level.
In November last year Mark and I were asked to speak to the All Party Parliamentary Group (APPG) on Motor Neurone Disease, when the welfare reform and work bill was being debated. Like many others, we were worried about the impact of the bill on disabled people and their carers. We know how important it is to have sufficient financial support when living with an increasingly expensive condition, and what it would mean if this support was cut.
We realised that this was the first time Kennedy?s Disease had ever been mentioned in a parliamentary debate and the first time it has been recorded in Hansard. This is some legacy.
Mark and Katy Styles Photograph: Katie Styles
So, we told the MPs our story. We told them about how we were once two professionals and how our lives had been devastated by Mark?s condition. I explained that as a teacher I had earned ?150 a day and now I receive ?62.10 a week in carer?s allowance for providing never ending care and support for my husband.
Mark explained how he was forced to retire at 46, that our income had fallen off a cliff, but our bills continued to increase. He told the group about how we travel miles and miles to receive care and how we had to make adaptions to our home which were paid for with savings that we will never be able to replace.
As we continued to speak, I realised that the number of MPs in room was growing. We had been warned that they would come and go due to their busy diaries, but it became clear that they were staying to hear all of our testimony. You could see it in their faces that they were thinking about how they might cope in similar circumstances and as they sat there some were emailing and texting their ministers to meet and discuss what we had said. Some were even tweeting.
A few weeks later Madeleine Moon, chair of the group, spoke about our visit during a Westminster Hall debate on neurological conditions. She mentioned us by name and our experiences with Kennedy?s Disease. We realised that this was the first time Kennedy?s Disease had ever been mentioned in a parliamentary debate and the first time it has been recorded in Hansard. This is some legacy. It proved to us the power of a personal story and how you can make a difference using your own words.
We still have work to do. The Welfare Reform and Work Act is now law, which means that people with Motor Neurone Disease who claim Employment Support Allowance will lose out as a result of the four-year benefit freeze. But people who get carer?s allowance will no longer have their benefits capped. There are wins and losses. Our campaigning work continues.
The day I made a difference is the Guardian Voluntary Sector Network?s series that showcases the work of people involved with charities. If you have a story you want to share email email@example.com with a short summary of your experience.
Reprinted from? Guardian On Line
Mark Styles has been appointed to The Rare Disease Advisory Group (RDAG). Mark sent the following note.
I attended my first meeting of the Rare Disease Advisory Group (RDAG) in my capacity as a Patient and Public Voice representative. ?We discussed a broad range of issues relating to the commissioning of highly specialised medical services in England, Scotland, Northern Ireland and Wales, and particularly the establishment of European Reference Networks to link up centres of medical excellence for rare diseases across Europe.
For further details please follow this link https://www.england.nhs.uk/commissioning/rdag/
The National Institute for Health and Care Excellence (NICE)* today (Wednesday 24 February) published its guideline on MND.
Sally Light, Chief Executive of the Association said: ?The MND Association strongly welcomes the publication of the NICE guideline on MND. This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters.
?It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered. It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers.
?We look forward to working with our members and supporters to ensure the NICE guideline on MND has a positive impact on the care and support available to people with MND, their families and carers in England, Wales and Northern Ireland.?
There are four main NICE documents published today, see below:
- The full guideline?[319 pages, PDF (2.20MB)]
- The short guideline [47 pages, PDF (189KB)]
- Appendices to the full guidance [468 pages, PDF (4.62MB)]
- Responses to comments received during the consultation [187 pages, PDF (1.76MB)]
The short guide is likely to be the main reference tool for professionals. It focuses on recommendations to clinicians and practitioners about what they should do when caring for people with MND.
The full NICE guideline discusses some of the reasoning and rationale behind recommendations in full and will be a hugely influential reference tool.
You can read our review of the NICE guideline?and how it?affects people with MND here.
*NICE is an independent body with an aim to improve outcomes for people using the NHS and other public health and social care services. Since 1999, it has provided the NHS, and those who rely on it for their care, with an increasing range of advice on effective, good value healthcare, and since 2013 it gained new responsibilities for providing guidance for those working in social care too. It produces evidence based guidance and advice for health, public health and social care practitioners.
Guidance from NICE is directly applicable in England, and guidelines are also routinely adopted in Wales and Northern Ireland.
Did you know the MND Association also supports people who have Kennedy?s disease?
In May a?new clinic specialising in Kennedy?s disease opened in?London at the National Hospital for Neurology and Neurosurgery.
To find out more please follow this link.