Saturday 12th October 201
Crowne Plaza Docklands Hotel
An excellent conference with a good mix of MNDA staff and volunteers who had travelled from all parts of the Eastern Region. 2 members of the East Kent group attended. Although we are in the Southern Region, we attended this conference as it was much closer than our own regional conference in Exeter.
The conference was moderated by Richard Coleman the Chairman of our Trustees. After welcoming us to the meeting, Richard introduced our first speaker Chris James, Director MND Association.
Chris started by joking about the last time he had visited Docklands, saying how much more pleasant this experience was compared to swimming in the docks to raise funds.
Chris then spoke about the Association over the years in this our 40th anniversary year.
The association was founded by a group of volunteers in 1979, little can that group have imagined what they would achieve over the next 40 years.
In 1980 the first research project was undertaken, and research activities have grown to some £16 million currently.
1980 saw the first awareness week and in 1990 the first International Symposium was held in Birmingham with just 35 delegates, in Glasgow there were over 1300 delegates. Quite an astonishing achievement.
The MND Care Centre was opened in 1993, there are now 22 around the country. Sadly we do ot have such a facility in Kent. This must change.
The All Party Parliamentary Group (APPG) on MND was formed in 2002, this parliamentary body is very influential and an important point of contact between the association and our law makers.
The ice bucket challenge in 2014 was not only a spectacular fund raiser but the more lasting legacy of the event is the greatly increased awareness of MND which has helped in fund raising ever since and will help long into the future.
The NICE guidelines on the treatment of MND were introduced in 2016. At last a guide to what is good treatment and service for people living with MND, the ground breaking document was as a direct result of campaigning over many years by the association.
In 2018 we lost one of our staunchest supporters, Professor Stephen Hawking. The remarkable man raised substantial sums for the association during his life and in death the auction of his wheelchair raised a whopping £290,000 for the association.
Now at the present in 2019 we are celebrating our 40th anniversary and much has happened since that inaugural meeting in 1979.
Our next speaker was Alex Massey, policy manager MNDA, who talked about Campaigning for change.
Two major areas were covered in a very short time.
Scrap 6 Months.
Currently the Department of Work and Pensions (DWP) are governed by a rule that states that fast tracking for benefits can only be allowed where a person has in the opinion of his clinician less than 6 months to live.
Since DWP assessors have no knowledge of MND, This haS led to the appalling situation where people living with MND have not been granted benefits and in some cases have been expected to retrain for other work.
Our Association has determined to get this law changed. To achieve this there have been many strands of activity.
James Douglas addressed APPG (see https://www.mndassociation.org/get-involved/campaigning/take-action/scrap-six-months/scrap-6-months-stephs-story/ )
Madelaine Moon MP introduced a private members bill (see https://www.mndassociation.org/mps-show-their-support-for-our-scrap-6-months-campaign/ )
A petition with 55,000 signatures was handed into 10 Downing Street requesting the scrapping of the 6-month rule.
Two things have subsequently happened which give great hope for the future, firstly the DWP have reviewed guidance to assessors which has made the system more accessible, secondly a review of the benefits system has been ordered and we hope this will lead to the scrapping of the 6 month rule for all terminally ill persons.
More information can be found at www.mndassociation.org/scrap6months
Act to Adapt
This campaign involves adaptive housing for people living with MND. Adapting accommodation is costly, time consuming and people need immediate support.
Because of the costs involved local government is often not keen to act. There are several elements to a solution:
National Government should:
- Commit to ongoing central funding for Disability Facilities Grants (DFGs)
- Review the means test for DFGs
- Ensure 10% of all new housing is build to accessible and adaptable standards
Local Government should:
- Implement a fast track, non means tested process for adaptations under £5000
- Provide discretionary support for people with a terminal illness
- Establish an accessible housing register
More information can be found at www.mndassociation.org/acttoadapt
The next presentation was by John Gilles Wilkes and he spoke about what might happen over the next 40 years. Some of this is near and will happen much is crystal ball gazing and may or may not happen.
Technology has made amazing leaps in the last few years and many things are rapidly becoming possible including the following:
- Voice banking has been made dramatically simpler by technology and much less time and effort is necessary, than just 2/3 years ago.
- Non invasive ventilation technology has greatly improved.
- Specialist (non-clinical) support will become available. Such as financial and legal advice.
- The association is developing improved support for children and Young people see https://www.mndassociation.org/support-and-information/children-and-young-people/young-carers-hub/support-for-young-carers/
- Environmental controls have made it simple to control the heating lighting and other services in your home.
- Accessible communications are becoming more common and easier to use with the benefits of predictive responses.
- There will soon be new regional roles which can be seen in detail here https://www.mndassociation.org/about-us/who-we-are/strategy-and-annual-reports/responsive/
- Digital by default. Much of our future activity will be digital in nature, due to the development of social media and the increasing use of media as a communication tool. See https://static.mndassociation.org/app/uploads/2019/07/29125728/Volunteering-digital-strategy-2019-2021.pdf
- Next generation communications see https://www.mndassociation.org/boldly-stepping-into-the-future-at-launch-of-next-generation-think-tank/
Looking into the future, we might very well see developments in any of these areas:
- Artificial Intelligence
- Walking with the mind
- Power of positive thought
If it isn’t broke brief presentations from 3 aspects of MNDA.
- Duane from the benefits advice desk a partnership with Citizens Advice Cardiff & Vale has helped many people with MND since it’s inception, to apply for obtain the benefits they are entitled to. More info https://www.mndassociation.org/support-and-information/our-services/benefits-advice/
- Mark Gately from North West Kent Branch spoke about the activities of his branch and the services they provide to local people living with MND.
- Christian a service user talked about the service a user might expect from MNDA, including Kings MND clinic, Benefits Advice Service, Quality of life Grants, Continuing Health Care and Personal Health Budget (NHS).
The final presentation was a research update by Sadie Vile.
Sadie talked about the research team and how projects to fund were decided upon.
Research information is provided in many ways, through the web site, information sheets, Thumbprint, MND research blog and newsletters.
We fund world class research and currently are funding 82 projects. The number of research projects have risen from 1 in 1980, to 8 in 1996 and to 82 in 2019.
Research we fund
For a full portfolio of the research we currently fund
Our research strategy can be found at
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For information on Clinical Trials in the UK and worldwide, please visit