Category Archives: Medical

Used for any posts about medical support.

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.

 

 

@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/

?

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/

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.

One day I stood up and made MPs listen

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.

KatyandMarkBigBen

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 voluntarysectornetwork@theguardian.com with a short summary of your experience.

Reprinted from? Guardian On Line

 

Rare Disease Advisory Group

Mark Styles
Mark Styles

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/

 

NICE guideline on MND published

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 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.

About NICE

*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.

24/02/2016

Annual MND Conference 2015

20 Years of MND Care and Research – Do things really change??

The Annual MND Conference was held at King?s College Hospital on Friday 12 June 2015. As it is now 20 years since MNDA has been funding King?s College Hospital MND Clinic, many presentations compared how things were in 1995 to now. One or two points from an information packed day (more should become available as post- conference summaries are released):

  • Research undertaken in different countries now to use the same methodology as previously some research was incompatible with that carried out elsewhere.
  • A National MND Register ? mapping people living with MND, resources, etc. E. Kent is hoping to be part of this research.
  • Bio-marker study underway to find physiological reasons prior to symptoms/diagnosis and also to help with interpreting results from clinical trials.
  • One approach to screening for respiratory muscle weakness ? sniff nasal inspiratory pressure. This is now considered an improvement on Maximal Static Pressures which, though also portable, can prove difficult to make a good seal around the mouth piece as the disease progresses.
  • Ethical issues around Tracheostomy Assisted Ventilation were discussed. Recent thought is that NIV + Cough Assisted could produce the same length of life as TV.
  • Voice and message banking – important to do this whilst speech is still clear. The process records a large inventory of speech or favourite messages that are then used to create a synthetic voice that approximates the normal voice. This voice can then be used on a communication aid later on. However, this is a lengthy and tiring process. Software is free ? currently available is https://www.modeltalker.org (post-conference information suggests that later technology has been developed where a voice similar to the pwMND?s voice can be merged with a few spoken words of the pwMND to form an inventory of speech/messages.)
  • Current research is looking at a 6-step process, e.g. 6 hits before MND manifests itself. Thus, genetics forms step 1 and the following 5 steps/hits from environment, lifestyle, etc., lead ultimately to MND. A reason why a large proportion of pwMND are in the older age range. More now needs to be known about the ?steps? and how these can be identified and prevented.
  • Sheffield Support Collar ? this newly designed collar, especially for pwMND and which was announced at last year?s conference, is now at the trial stage and there is a request for 100 people with MND and experiencing some degree of neck weakness/pain to volunteer for this trial. (MND Connect could, hopefully, refer possible volunteers)
  • There is a new internet resource, myNIV, written by pMND and their carers/families to help others by sharing their NIV (Non-invasive ventilation) experiences.