Oh – It can be such a nuisance, and so frustrating too!
These things I took for granted, but now find hard to do.
Like putting on a shirt, sweater or a tie,
I have to call upon my wife no matter how I try.
D.I.Y. now a thing of the past
Even those simplest of tasks-
Like raising a hammer to strike a nail,
Sounds so simple, yet I fail.
Muscles refuse all my demands,
My neurones are in sole command!
And they in turn are burning out:
Motor Neurone if you’re in doubt.
This disease is reasonably rare
And why I need such help and care
But the other day, I felt quite grand,
Read on and you will understand.
At the hospital, the other day
I saw a chap in a far worse way
With tubes, pipes and drips galore
His age? Probably thirty four!
Lying in his hospital bed,
Doctors, nurses, one shook his head.
Me? Well I was exit bound.
So when you’re feeling down and blue
Remember those worse off than you
Accept the things you cannot change
And cope with those within your range
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.
Carers were asked to contribute to a call for evidence for a Carers Strategy in early 2016. Many carers and carers organisations filled in the questionnaire and wrote reports on the issues for carers and how to solve them.
Everyone expected the Carers Strategy to be published at the end of 2016. We waited throughout 2017. An election happened. The Minister changed. We continued to wait. By October I decided that I needed to do something to get government talking about the Carers Strategy again. I was quoted twice in parliament as being very annoyed that carers were still waiting and our voices were unheard. The Minister then made an announcement in November that there would be an Action Plan. That Action Plan was due in January. It never came. We were on our next Minister.
I created a petition on the Government’s own petition website to get Government to publish the Carers Strategy. I even took an online course with UK Parliament to learn how to do this. My petition went up on the website on 22nd January. It runs for 6 months. To get a response from Government I need 10,000 signatures. To get a debate I need 100,000 signatures. But no matter how many signatures this petition attracts it has got people discussing carers and the lack of a properly thought through strategy.
So far Kent Carer Support Organisations have supported this petition through their networks, as have many other carers organisations throughout the country.
MPs have shared the petition on social media and there have been messages of support and encouragement.
Why did I do this? As someone who meets many carers it struck me how few knew their rights, few identified themselves as carers and few were claiming benefits they were entitled to. A proper strategy should address these issues.
We will be holding our second coastal marathon walk on Sunday May 20th 2018.
A 25 mile walk, will take place from Whitstable to Broadstairs via King George V Park, a 13 mile walk, from Minnis Bay to Broadstairs via King George V Park. A shorter walk of 5 miles, is also planned from Botany Bay Hotel, Kingsgate to Broadstairs via King George V Park.
There is an entrance fee of £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance. Only registered walkers can walk and they must wear the tee shirt for insurance purposes.
Each walker is requested to find sponsorship to support people living with MND in East Kent. There is no obligation to raise sponsorship but all support is greatly appreciated.
If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent. Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/teams/coastalwalk2018/join so we can keep track of the total funds we raise.
If you want to make a donation in support but not register please visit our Donations Page
Due to circumstances beyond the control of the organisers this event has been postponed and will now take place at another venue on a later date. As soon as we know the details we will publish the information.
On Saturday 11th November a team of 5 plan to ride 500 kilometres in Relays. The effort will begin at 8am and the team hope to complete 500K by 6 pm.
They are doing this to raise funds for the Motor Neurone Disease Association (MNDA) in memory of Bill Ashby who sadly died of MND. The funds raised will help support people living with MND in East Kent.
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.
The Kent Messenger Charity Group held their annual forum at The Mercure Great Danes Hotel in Maidstone on Friday 13th October. The forum recognised work of charities and schools for their hard work and dedication.
Mark styles attended from The East Kent Group of MNDA, who are the Kentish Gazette Charity of the Year 2017.
MNDA East Kent was awarded A Gold Charity Mark Award, which was received on our behalf by Mark Styles.
Mark also collected a Brain and Brawn Triathlon Award on behalf of Clive Hudson, who for health reasons was unable to be present on the day.
Mnda East Kent would like to thank KM Charity Team and the KM Group for all the support we have received during 2017 as Kentish Gazette Charity of the Year.
On Sunday 15th October at 7pm until Tuesday 17th at 7am I will be doing Silence Speaks in memory of my amazing Dad (David Ironmonger).
My dad was such an amazing man, always smiling, loved life and everybody loved him. In 2016 Dad was diagnosed with MND, which was a great shock to himself and the family. Over the year Dad lost control of his legs, arms, couldn’t feed himself, and it got so exhausting for him to talk. He had carers 3 times a day to hoist him out of bed, wash, shave, brush his teeth, etc.
My Mum, Brother, Husband and myself would also help with his care. We would take him out in his electric chair and mobility car so he could enjoy the places he loved to go and see. My dad was so brave and battled through this cruel time and would always be smiling.
Sadly on July 16th 2017, Dad lost his battle to this cruel disease. Myself, brother and my mum were all by his bedside when he died, and he would still try and smile right to the end.
I miss my Dad so much and think about him everyday.
I am doing this as I have a CHOICE too.. My Dad Never had a CHOICE.
I would love to be able to help someone else with MND by raising money.
I so wish there was a cure for this wicked and cruel disease.
Our first Tea by The Sea was held at the Botany Bay Hotel, Kingsgate, Thanet on Wednesday 28th September.
We had six people present 3 of whom had not previously attended one of our meetings.
We enjoyed a good chat with tea and scones and all present were agreed the idea of a local meeting held monthly was a good idea, especially as they felt unable to travel to other meeting held further away in Kent.
Tea by The Sea is on the last Wednesday of October (25th) and November (29th) at the Botany Bay Hotel, Kingsgate at 3pm. At the November meeting we will review our plans for 2018.