Category Archives: Research

Used for any article about research.

AGM July 8th 2017

On Friday evening when we arrived at the hotel,  we had the opportunity to meet with some trustees and members of other groups, which was helpful in identifying some new ideas to work towards improving our activities in East Kent.

Saturday started with a short welcome speech by Alun Owen Chair of the Trustees of the Association.

Sally light then spoke of what we had achieved in 2016 and how we can help.  She used 2 excellent graphics for this and these are reproduced below.  These present the gist of her speech much better than any words.

Chris James spoke about the Association’s in complementing statuary services, collaborative working and the MND Costs Campaign.

Steve Bell spoke about the “What You Should Expect” an excellent small booklet giving brief details of what a pwMND should expect from the NICE Guidelines on MND and the Audit Tool to help assess how various bodies are doing in compliance with the guidalines.

We broke into groups which covered subjects like money for nothing fund raising, care update, the journey from awareness to action and local and regional finance.

We broke for lunch and the opportunity to look around the various stalls, we were particularly impressed by REMAP, a charity which makes custom made equipment to help disabled people live more independent lives.  Please visit www.remap.org.uk

The AGM followed, during which our own Katy Styles was elected as a Trustee and Richard Coleman was elected as Chair of the Trustees.

The keynote speech was  delivered by Professor Ammar Al-Chalabi.  This speech was one of the most impressive I have ever been present at and I recommend everyone to look at it here https://www.facebook.com/pg/mndassociation/videos/?ref=page_internal click the link to MNDA Research under All Videos.

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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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.

CEO Appeal – 2016

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Sally Light – CEO MND Association

Sally Light Chief Executive Officer of MND Association makes an annual appeal to all Branches and Groups to support various activities.? In 2016 the following options were presented for consideration.

Supporting people with cognitive changes and FTD

We are hoping to fund the development of a toolkit to assist clinical staff in the support of people with cognitive impairment and frontotemporal dementia. We know that cognitive changes associated with MND in some people can be a very difficult added burden for individuals and families and we are keen to help clinical teams to offer more support. This pioneering work is being carried out by Prof Eneida Mioshi and colleagues at the University of East Anglia

Using the NICE Guideline to audit service quality

Ensuring the NICE guideline is a real lever for improvement in services for people living with MND is one of our highest priorities for the next few years. We have written out to all hospitals to ask them how their services measure up to the guideline. The next phase of our work is to develop an audit tool that services will use to benchmark their own performance. We will use this to measure the quality of our own care centres and networks but also to influence those services that we do not fund and/or may have concerns about. Where problems are identified we will work with the local team to support improvement.
Single point of contact for wheelchair or AAC problems

Over the last couple of years we have funded two co-ordinators to act as a single point of contact for people with problems relating to wheelchairs or MC. This funding has come from the Department of Health wheelchair grant and Ice Bucket Challenge (IBC) monies – both one off, non-recurrent funding sources. These services have proved so useful that we want to continue them and are now looking for sustainable ways in which to fund them. In the last two years these two services have helped 1,095 people find better solutions to their equipment problems.
Welfare benefits advice

Over the last 18 months we have been piloting a welfare benefits advice service using money from the IBC. We now have pilot services in Manchester and the East Midlands and early feedback is that they are very successful in helping people with MND to access the welfare benefits to which they are entitled.
In Manchester the service has generated the annual equivalent of ?500,000 for people with MND and their families. Our ultimate aim is to find the resources to expand the service to the whole of England, Wales and Northern Ireland.
Our 40th Anniversary

In 2019 our Association will celebrate its 40th birthday. It is an amazing achievement to have grown to the organisation that we are today from the small group of committed volunteers that first got together in 1979. We plan to celebrate all that we have achieved in those 40 years and acknowledge those who have helped make it all happen. In 2017 we would like to start to collect stories and recollections from those volunteers that have been with us from the early days of the Association. We also want to engage with different groups and individuals on what activities we might undertake to mark the anniversary and how it can be used to increase awareness and support.
At the trustees’ discretion

We know that some branches and groups prefer to leave funding decisions to our trustees. We are due to publish our new 2017-21 MND Association strategy at the end of this year and so our trustees would be pleased to allocate any contributions in this category to our strategic priorities. As last year, if the total funds that you contribute exceed the costs of any of the above projects the surplus monies will be put to very good use on one of the other projects or a project which the trustees deem as a high priority.

East Kent Group Decision

East Kent Group?decided the most relevant?to support the following with a contribution of ?2500 to each.

  • Supporting people with cognitive changes and FTD
  • Using the NICE Guideline to audit service quality

 

Financial impact of MND Survey

The MND Association have commissioned a piece of work to show that being diagnosed with MND/Kennedy?s Disease has a huge financial impact on families. This work is being undertaken by DEMOS and was started following East Kent Group?s Katy and Mark Styles?s speech to the All Party Parliamentary Group on MND in Parliament this time last year. There are two surveys currently running. One is for people living with MND and the other is for bereaved carers of people with MND.

Katy said ? It is a sensitive subject to speak about finances to anyone. I know, first hand, that unless people with MND/ Kennedy?s Disease and their families speak about their real day to day financial worries, decision makers like MPs and councillors will never understand all of the extra costs that MND brings. Seeing the penny drop on the faces of those in parliament, when Mark and I spoke about the adaptations we had made to our home, talking about income we do longer had and equipment we had to buy ourselves, made a collosal difference to those present. I so want this report to have lots of personal stories like ours about the financial difficulties we have to face in light of the disease. Our personal stories of our own financial impact are so powerful and need to be recorded.”

http://www.mndassociation.org/get-involved/campaigning-influencing/financial-impact-of-mnd/

Financial impact of MND

financialeffectofmnd

We believe that MND can cause a huge financial impact on people living with MND and their families, but we?d like to understand more about that and what needs to be done to support them.

The MND Association has partnered with Demos (an independent think tank based in London) to research the financial impact of MND, and raise the public profile of this important issue. We?ll be publishing our findings in 2017 and using them to inform our work with key stakeholders in health, social care, local government and national politicians.

How can you take part?

There are two surveys:

Are you living with MND?

Complete the survey for people with MND

Take the survey

Or you can pick up a paper survey from your Care Centre, Branch or Group, or contact tina.downs@mndassociation.org.

Have you lost someone to MND?

Complete the survey for bereaved carers of people with MND

Take the survey

While a very sensitive topic, we think it is important to consider the financial impact alongside other impacts (e.g. on health and wellbeing) that bereavement from MND has on people?s lives.?

Surveys need to be completed by Friday 27 January 2017.

We would really appreciate your support with this important research.

If you have any further questions about the project, please contact Simone Vibert at Demos by emailing simone.vibert@demos.co.uk or by phone on 020 7367 4200.

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.

Regional Conference – Crawley 9th April 2016

Regional Conf 2016 A The South?s regional MNDA conference was held at Crawley on 9th April. One feature of the new regional conferences is that there is live streaming of the conference. This enables people to watch the conference live from their own homes.

The day was split into three sections. Firstly there was a section on care – Hilary Fairfield, the Regional Delivery manager spoke. ?There was a section on campaigning and raising awareness. David Setters of East Surrey Branch spoke about his motivations to campaign, alongside John Kell, Policy Manager. Do please watch this as David is an inspiration to many of us and a great speaker.

Regional Conf 2016 BIn the afternoon there was a research section where?Dr Jacqueline Mitchell spoke about the role of mouse models in understanding the role of protein build up in MND.

If you have not?been to an MND conference, do try. The best part as ever, is meeting up with people living with MND and their families. We often call it the “MND family? and it really does feel like you are meeting up with members of a large supportive family. Other highlights are meeting staff from the Association, who normally you only email and looking at all of the stands with all of the MNDA?s literature.

 

The link to the?livestream is below.

http://livestream.com/eventstreamingcompany/mnda

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.

 

Wheelchair Project

MNDA?has appointed the Institute of Health and Wellbeing at the University of Northampton to conduct an evaluation of the Wheelchair.

As part of this evaluation, we are seeking feedback from wheelchair users or carers on their experiences of mobility assessment and wheelchair provision from their local wheelchair service.

This will take the form of a questionnaire which should take 10-15 minutes to complete.

We would like as many wheelchair users as possible to participate in the survey as it will be of great value not only to our evaluation, but also to gain more information on wheelchair provision in general.

The following is a link to the questionnaire: https://northampton.onlinesurveys.ac.uk/wheelchairprovisiononlinesurvey

Please add this link to newsletters, websites etc. to publicise as widely as possible. For queries about wheelchair provision, please email: wheelchairqueries@mndassociation.org

For more about the Wheelchair Project http://www.mndassociation.org/wheelchair-service