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
The East Kent Group met on Saturday for an open meeting for people living with MND, their carers, friends, family and volunteers.
We had 23 attend in all and we had the honour of a visit from Councillor Colin Spooner The Sheriff of Canterbury, who addressed the meeting. Huge thanks to Colin for making the time in his busy schedule to visit with us.
Other contributors were Chairman Clive Hudson who spoke briefly about fund raising plans; Judy Keay who spoke about our Association Visitors; Lynn Hudson who spoke about our monthly Tea by the Sea meetings and finally Katy Styles who updated us on current campaigning activity.
We enjoyed sandwiches and cake prepared by the committee members and lots of warm hearted and friendly conversation.
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.
Some time ago, when I started to look around for some voluntary work I decided to become involved with MNDA. Initially I joined the committee in East Kent and then trained as an Association Visitor (AV)…starting in 2016. Talking to people I have met since becoming involved with MNDA East Kent I have been struck by the resilience and tenacity that many of these folks show…some are people living with the disease, others are relatives, carers or friends of theirs. A common factor shown by so many is that of supporting each other in the face of this vile and debilitating disease.
The camaraderie I have witnessed first hand is incredible, many form friendships…co-supporting each other and sharing ideas and treatment options. Some have set up fund raising initiatives, and I am aware that quite a number use the network of social media to keep in touch, some are happy to have an Association Visitor offering friendship and support, and some like to attend meetings…networking with others facing similar difficulties. It’s so rewarding to work together with these people and I really enjoy doing so.
One of the many challenges facing PwMND is the gradual reduction of their own physical abilities meaning that activities which were easy for them previously become difficult or indeed impossible. It means that travelling options are very restricted, they may no longer be able to drive, and public transport options may well be very limited. Many of the support activities in East Kent are centred around Canterbury or Ashford…. which means an almost impossible trek for many living in the rural or coastal areas of Kent, such as Thanet. Several voiced their disappointment at not being able to attend these meetings without supreme efforts by themselves and their carers.
Upon discussion about these difficulties with the MNDA East Kent committee we decided to offer for a trial period, of three months, a Thanet based support group, meeting once a month in the afternoon in a suitably placed venue, and one which offered many appropriate facilities.
Several options for a venue were explored. We decided on The Botany Bay Hotel in Kingsgate which is ideally situated for all of Thanet, with plenty of parking, access and facilities are excellent. The manager and staff are extremely helpful and willing to accommodate us. Our trial period starting in September 2017, on the last Wednesday of each month from 3pm until 5pm, and we call it Tea by the Sea!!
We contacted many people by telephone and email to invite them to come. We offer tea or coffee with cake or scones, and have been delighted at the response. Each meeting has been attended by PwMND, families and carers. These are small meetings, but so friendly, everyone getting to know each other, sharing experiences, frustrations and coping mechanisms in a spirit of camaraderie and friendship. The hotel has allowed us to use a small private function room for no extra charge, all we pay for is the tea and cake consumed. The first meeting was attended by eight people, subsequently the attendance varied from 16 down to four (the weather was typically coastal atrocious that day!!)
The trial period of three months ended in November, but by popular request was extended to include December and will now continue into 2018, on the last Wednesday of each month. The next dates are as follows:
Wed January 31st, Wed February 28th, Wed March 28th, Wed April 25th, Wed May 30th, Wed June 27th all between 3 and 5pm.
Please make a note of these dates. You can be sure of a warm welcome, and the refreshments are pretty good too!!
We had a good attendance at our latest monthly support meeting which was held at Thanington, Canterbury on October 14th.
We heard a presentation from Dawn Cockburn and Julie Murby of the Harmony Therapy Trust. A charity who provide NHS approved therapies to patients living with life limiting or debilitating diseases, including MND.
We heard that Harmony Therapy Trust is run entirely by volunteers. The charity is based on the Isle of Sheppey however, they have expanded their services to cover the whole of Kent.
The charity can provide up to 6 sessions of therapy to persons who would be expected to benefit from the therapy. Therapies are only provided following medical referral.
Harmony Therapy Trust can provide a range of therapies including acupressure, aromatherapy, counselling/talking therapies, healing/reiki, holistic massage, hypnotherapy, ibx nail treatment, indian head massage, osteopathy, reflexology and reflexology lymphatic drainage.
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.
We were invited on Sunday August 6th to visit Strode Park Foundation for tea and a walk around parts of the house and the grounds.
There were 12 of us attending and we enjoyed a fabulous tea of sandwiches, scones with jam and clotted cream and a selection of cakes.
The sandwiches, scones and cakes were prepared at Strode Park by ??, all were beautifully fresh and delicious. The tea was served by Anthony who thoroughly spoiled us.
We were shown around the grounds, Daren found a lake with a no fishing sign, which indicated to him there would be something worth catching.
The open air auditorium is a fantastic facility with every part accessible by wheelchair, we were invited to look at the website Strodeparkfoundation.co.uk to find out about concerts and booking them if we wished.
We were shown around non residential parts of the house, including the gymnasium and the hydro therapy pool, which is available to people living with disabilities including MND.
Daren looked up to catch this image of our group – most of us missed it!!
Huge thanks to John Cotterill who showed us around and to ?? and Anthony for making the tea so special.
We have been invited to have tea at Strode Park at some future date and we are welcome to attend any public events held at the Foundation.
This month he has been raising awareness of MND and Kennedy’s Disease as he is a finalist in the National Cat of the Year. He is in the Better Together category where it is all about how he and his owner, Mark Styles look out for each other.
Following our successful pilot work we have now established a benefits advice service for people with and affected by MND in England and Wales. The service is available by telephone, e-mail and webchat*.
Telephone:??????????????? ??????????? ??0808 801 0620 (free to call)
The service is provided in partnership with Citizens Advice Cardiff and Vale and will:
Help users identify the benefits they may be eligible to claim and how best to claim them
Deal with complex benefits issues, including appeals against benefits decisions
Welsh speaking advisers are available on request.
*The telephone and e-mail services are available from 24th Apr 2017, the webchat service will go live later in the week.
You can either contact the service on behalf of your patients or simply suggest that they or their families/friends contact it direct.
As part of the development of the service we are looking at how best we can help people who cannot use the phone, e-mail or webchat complete benefits applications at home and how we can make the service available to people who do not speak English or Welsh.