The United To End MND campaign – led by the MND Association, MND Scotland, My Name’5 Doddie Foundation, people with MND and neurologists – has successfully secured a Government investment of £50 million over five years into targeted MND research.
The Government made the announcement in the middle of November with Prime Minister Boris Johnson saying:
“We are going to throw the full weight of government, industry and civil society behind a new British-led scientific mission to transform the fight against this devastating disease.”
The investment pledge came after two years of campaigning by the coalition and following a four month media campaign in the Sunday Express under the banner ‘Fund the fight to cure MND’.
Secretary of State for Health and Social Care Sajid Javid, who met the campaigners at Westminster in September, described the campaign as ‘hugely important’.
Work started immediately on seeking meetings with Ministers to confirm when and how the funds will be made available and the most effective way to target the investment.
This project began with a specific objective which is shown below in blue text, however Covid 19 has played havoc with our fund raising activities. Our fundraising is currently down in excess of £10,000 and all funds raised currently have to be available to maintain the services we provide to people living with MND in East Kent.
Since September last year I have managed to ride 910,000 of the one million metres target I committed to cycle during my 75th year to raise funds for MNDA in East Kent. It was my hope to raise 1 penny for each metre ridden. To achieve this we had planned several events to support the project. needless to say these have all been cancelled due to Covid 19.
In view of these cancellations we have reduced our target from £10,000 to £2,500. If we are able to hold any supporting events before September 26th 2020, we will reconsider our target.
Thank you for reading and thanks for your support of the MND Association in East Kent.
Clive Hudson Group Leader MND Association East Kent
Original copy
For some time now I have been staggered at the amount of time people living with MND need to travel for various services.
This came to head for me, when I heard a member recount how he has had a round trip of 7 hours plus some 2 hours waiting times. This struck a bell with me, as I often complain about how far we need to travel from East Kent to attend MNDA meetings.
Ideally no person living with MND should travel more than 1 hour from their home for any services and wherever possible multiple services should be available on a single visit
MNDA Million Metres was born, I have committed to cycle one million metres during my 75th year to raise funds for MNDA in East Kent. I hope to raise 1 penny for each metre ridden. These funds to be used exclusively to improve services for people living with MND in East Kent. Where long journeys are necessary, ensure they are as comfortable as possible.
Since this project involves raising awareness and campaigning as well as fund raising, I expect it to take more than a single year to achieve. The concept of MNDA Million Metres will be used until the objective is achieved. In the unlikely event that we raise more funds than necessary for the project then any surplus will be used for research into a cure for MND.
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.
A petition with 55,000 signatures was handed into 10 Downing
Street requesting the scrapping of the 6-month rule.
The team from MNDA delivering the petition to 10 Downing Street
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.
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
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.
What’s New
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.
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 Links
Research we fund
For a full portfolio of the research we currently fund
On Tuesday 2nd April, Katy Styles and the We Care
Campaign team arrived at Westminster to collect the UK Parliament’s Digital
Campaigner of the Year.
2019 marks the second year
of the Your UK Parliament awards. The winning entries were chosen by the
Speaker of the House of Commons, and a judging panel of MPs, Peers and
independent judges. All of the winners attended an awards ceremony hosted by
the Speaker in the Houses of Parliament.
The Rt. Hon John Bercow,
Speaker of the House of Commons, said:
“There is nothing more
inspiring than hearing how these winners used so many innovative ways to get
people more involved and connected with UK Parliament. This year’s awards have
shone a light on this amazing work – and will hopefully encourage others to
join the campaign.”
We Care Campaign is an ongoing campaign to get a better deal
for the UK’s 7 million unpaid carers. It is led by carers, for carers. Carers
are a hard to reach group as they often feel too tired, too isolated and
disempowered to take part in campaigning.
We
Care undertook 3 digital activities. Katy ran an e-petition calling on
government to publish a Carers’ Strategy. The petition obtained 2,124
signatures. We Care also encouraged unpaid carers to take part in a twitter
#AsktheMinister question session to the Minister for Social Care, Caroline
Dinenage. We then used our own @WeAreCarers account to host Barbara Keeley, the
Shadow Minister, enabling carers to ask more than one politician the same
questions during Carers Week. We Care organised a Valuing Carers digital event
where decision makers, carers and the cared for posted messages of support for
unpaid carers during Carers Rights Day.
We
Care Campaign’s activities made a massive difference and impact on our target
audience of unpaid carers who took part in our campaign actions. Individual
carers took part in digital actions which helped organise a real grassroots
campaign. We Care worked hard to utilise every contact made, by replying to
every single contact individually. An unpaid carer speaking of one of our
digital takeovers said, “Normally we get a bit of cake and bunting for Carers
Rights Day. This is so much more than that. It’s not been done before.” We
equally made an impact on individual decision makers, within parliament and
beyond and have built a strong network, enabling us to reach more carers in
2019.
Katy Styles who led the campaign said,
“We Care want to thank you so much for a special day
in Parliament. Engaging with Parliament at this time in a positive way has
never been so important and we have loved playing a small part in this.”
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Below is a short animation film showing why it is important to persuade the government to scrap the six month time limit for people with MND and other terminal illnesses before they can access benefits.
Ten people die every day while waiting for a decision on their benefit claim.
The ‘Scrap 6 Months’ animation films are inspired by real stories and facts. The characters, however, are fictitious and do not depict real people either living or dead.
The local association held its regular support meeting on Saturday 9th February at Thanington Neighbourhood Resource Centre Canterbury.
The meeting was well attended by those living with MND, their carers, association volunteers and friends.
We learnt about the role of Association Visitors, how they can support people with MND and their carers/families.
We also learnt about the role of a trustee of the national MND association. How it was important to support research via funding and to constantly highlight to MPs and the wider media the difficulties and frustration that people with MND have in accessing benefits.
Clive, the local association chairmen gave an update on monies recently raised. He also spoke about how the local association spent its funds.
One of the issues discussed was how to access priority services with the major utility companies, such as being able to have an emergency electrical supply during power cuts so that ventilators will still work.
A variety of homemade cakes were enjoyed by those present.
This Sunday marks the 50th anniversary of the prescription charges exemption list. This list has remained largely unchanged since 1968, which campaigners say has resulted in people living with long-term conditions paying high amounts for necessary medication. This week we hear from campaigners and people, in their words, on these costs on why they believe these charges should be scrapped.
Unless you’ve seen your income erode to nothing, you probably wouldn’t get aerated about prescription charges. You might notice when you pop into your doctor’s surgery for a prescription, that the cost has gone up per item (currently £8.80 in England if you are interested). You might think about why some conditions get free prescriptions and others don’t but you probably don’t send much of your time worrying about it.
Katy and Mark Styles
As my husband and I have recently found out, we are all one illness, condition or accident away from discovering all about prescriptions charge exemptions and the inequity present in the current list.
The list of medical conditions which are exempt from paying for prescriptions hasn’t changed since 10 June 1968. Cancer was subsequently added to the list in 2009 but that was the last change. Why is this a problem? I’m going to use my husband Mark’s long-term illness as an example. The first paper published on Mark’s condition was published in July 1968. This was a whole month after the list of prescription exemptions was drawn up. The list hasn’t kept up to date with medical progress or treatments.
Kennedy’s Disease is a rare disease of the motor neurones. Mark was once fit and active, with a professional career and interested in cycling, swimming and running. He started to limp and we all thought he needed some rest and a bit of physiotherapy. The limp became worse and he started to fall over. He went from using a stick, to crutches and now has a wheelchair to help him move around. His muscles are simply wasting away and his breathing muscles need to be supported by a machine at night.
Kennedy’s Disease is progressive and degenerative so things get worse over time. There is no treatment and no cure. So, no drugs. However, Mark does get frequent chest and throat infections, sometimes needing steroids and antibiotics.
Mark was ill health retired four years ago and I no longer teach. I am now his full-time carer. Our income has fallen off a cliff. We used our savings to adapt our house. We created a downstairs room and a wet room as he could no longer climb stairs. Having a long-term condition means additional expenses. We travel further for medical appointments to see consultants in specialist clinics. Heating and water bills are higher and costs are rising.
In addition to specific illnesses, there is one other category that enables a medical exemption from prescription charges. Anyone with a continuing physical disability which prevents them from going out alone, is exempt. In other words, someone in a wheelchair, or who is unable to go out without a carer, is eligible for free prescriptions.
We didn’t find out about this from any of the clinicians who had diagnosed or continued to support my husband, nor did we find out during his NHS wheelchair assessment. We found out from a member of staff at the Motor Neurone Disease Association (MND Association) * during an unrelated conversation two years ago.
Once we were told this we filled in a simple form, the GP signed it and sent it for processing. The onus is on the person living with the condition to find out whether they are exempt and to complete the form. We do feel that signposting is needed to highlight that this exemption is available. Anecdotally we are aware of people who are eligible for free prescriptions via this category but do not know about it.
And the real kicker – Mark has recently been diagnosed with diabetes as a consequence of his Kennedy’s Disease. His body effectively destroying the delicate insulin producing cells he needs. Diabetes is a condition exempt from prescription charges. He now qualifies for free prescriptions on two fronts. But me, as an asthmatic, and his carer, earning just £64.40 a week in Carer’s Allowance does not. A prescription charge of £8.80 for me is pretty much a whole day’s pay (£9.20). Now that’s a sobering thought.
*The Motor Neurone Disease Association (MND Association) support people with Kennedy’s Disease.
I started my own petition to get unpaid carers valued by government and society as a whole, six months ago. As a carer myself I was dismayed that carers issues went unnoticed, their voices went unheard and the sheer value of their work ignored by both government and society as a whole. I was determined to make carers voices heard.
The petition was a reaction to the government’s continued failure to publish the Carers Strategy it promised all unpaid carers back in 2016. On July 22nd my petition ended with 2,124 signatures. The map below shows the reach of the campaign across the UK as a whole.
Whilst the petition never reached the threshold required (10,000 signatures) to get a response from government it did apply pressure on two ministers and galvanised carers support organisations up and down the country to fight for carers rights. A national Carers Strategy would help to identify and support carers who are facing increasing cuts ro their services and are feeling more isolated and invisible.
Whilst my petition was the main thrust of my campaign, it quickly became clear to me that carers needed to campaign on their own issues. We Care Campaign was launched in April. Over the six months we have held a launch party and we have been mentioned in parliament. We had spoken to journalists, written articles in papers and online. We have appeared in carers magazines and been on radio programmes. We have enjoyed some craftivism (craft and activism) and we have used social media effectively. We hosted a twitter Q and A session during Carers Week for the Shadow Minister for Social Care and we have even identified carers who weren’t identified before.
Just before Carers Week, an annual event to highlight the work of carers, the Carers Action Plan was published. This was a set of 64 actions government had drawn together for carers. Whilst it was cross- department it failed to provide any financial support for carers and much has been left for the Social Care green paper in the autumn.
I was recently awarded a Jo Cox Foundation Scholarship to attend some specialist Campaigns training. This has given me the opportunity to see carers issues in a wider context and enthused me to carry on the fight for a better deal for Carers throughout the UK. Meeting so many other campaigners and hearing their stories was inspiring and I am looking forward to where We Care Campaign goes next.
You can follow us on twitter at @WeAreCarers and if you are a carer yourself, join our We Care Campaign Facebook Group Page for updates and how you can help support our grassroots movement.
The MND Association AGM was extra special for me this year as it makes a full year since I was nominated to be a trustee for the Association. I have now done a full round of Board Meetings, Committee meetings and project task group meetings.
Why go to the AGM?
The AGM is a place to meet up with old and new friends, other volunteers and staff from our MND community, together with exhibitors and speakers.
I find that there is always something new to learn, whether it is from another Branch or Group, or finding out about the research being done, or the equipment on offer. One big hit was the virtual reality headsets which Mark, my husband tried out. One was a general virtual reality demonstrating all of its features including being in a helicopter, in a hot air balloon and giving lots of different views and landscapes. He particularly enjoyed the car racing around the Le Mans circuit.
I attended a workshop around Legacy Fundraising which was one aspect of the Association’s work that I knew little about.
Even if you can’t attend to you can follow the event Live on Facebook and it is always nice hearing the messages read out from those back at home, watching the event unfold. Here’s the link to this year’s AGM and research speech. https://www.mndassociation.org/videos/
The afternoon speaker was Professor Martin Turner who was there to speak about his bio -marker research at Oxford. Something close to my heart. I have been part of that research, sitting in multiple scanners for many hours as a healthy control for Professor Turner’s research. I was very interested to hear how that particular research was going.
Many MND patients, families and friends plan to meet at 11 AM on Wednesday 28th February in Parliament Square directly opposite the Houses of Parliament.
The objective of the meeting is to get the Department of Work and Pensions to cease reassessment of patients with MND for Employment Support Allowance (ESA).
This is an objective every member of our association desires but as ever there are many ways to go about securing our objectives. It is useful to read Sally Light’s blog on the way the association is approaching the objective. Follow this link to read Sally’s blog
Background to MND Patients dispute with the Department of Work and Pensions Motor Neurone Disease (MND) Is a progressive and terminal neurological condition in 100% of cases. It takes away an individual’s ability to use their hands, arms and legs, to talk and swallow and ultimately to breathe. 50% of those diagnosed die within two years of diagnosis, 33% within 1 year.
Employment Support Allowance (ESA) is a benefit to replace the income you lose when a disability prevents you from working. Given that recent research showed that life for people living with MND costs on average an extra £12,000 per year (and that is before loss of earnings), ESA is a vital income supplement.
To receive ESA people must undertake a “work capability assessment”. This is not linked to a diagnosis. However, over 90% of people living with MND who undertake the “work capability assessment” are deemed not fit to work and go onto the higher rate.
People receiving ESA are subject to reassessment. But MND NEVER improves. It only gets worse.
So there is absolutely no need to reassess. The process causes unnecessary stress to individuals and their families who should be focusing on the days they have left rather than fighting the system. In addition, it is a waste of public money.
From October 2017 NEW claimants will not have to be reassessed once they are on the higher rate.
However, an estimated 600 people living with MND already on higher rate ESA remain subject to reassessment. This is CRUEL and UNJUST and the practice must be ended.
@MNDPatients are angry at.…
1) the TIME this has taken to be resolved . Given the nature of the disease many will have passed away since a October 2016 promise by the then Minister for Disabled People, Penny Mordaunt MP.
2) the latest Department of Work and Pensions (DWP) “excuse” for the delay. They blame it on “complex operational and systems issues” for which, clearly, people living with a terminal and progressive condition cannot be to blame. The burden MUST be taken away from MND patients.
Our RECOMMENDATION is that a “work around” is found without delay. Rather than complete yet another long form, why can’t affected people simply contact their DWP office, tell them they have a diagnosis of MND and supply contact details for a health professional – GP, neurologist, specialist nurses etc to confirm their diagnosis. The estimated 600 is by no means a huge number in the universe of ESA claimants. The stress on MND patients will be immediately reduced and civil servants need not trawl through 600 long forms but simply make brief telephone calls or send short emails to marry up the work capability assessment with the diagnosis.
For similar reasons, we are also demanding that similar exemption criteria are applied to reassessments for Personal Independence Payments (PIP)/Disability Living Allowance (DLA) for those with terminal, progressive diseases including MND.
