MND Patients Meeting at Westminster – 28th February 2018

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 Strategy Petition

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.

Katy Styles, Rosie Duffield MP and Judy Keay at MNDA Parliamentary Reception

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.

Have your say

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.

If you feel you can support this, please click on the link and sign up and share. Thank you.
https://petition.parliament.uk/petitions/209717

Katy Styles – Carer, MNDA Trustee and MNDA East Kent

Tea By The Sea for MND – the reason I volunteer

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.

Lynn Hudson, Christine Rawlins, John Rawlins, John Sturges, Clive Hudson, Philomena Lawrence.

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 July 25th and Wed August 29th all between 3 and 5pm.

Botany Bay Hotel, Marine Drive, Kingsgate, Broadstairs, Kent CT10 3LG

Please make a note of these dates. You can be sure of a warm welcome, and the refreshments are pretty good too!!

If you can make it please come.

Lynn Hudson MNDA East Kent

Coastal Marathon Walk to D’Feet MND – May 20th 2018

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.

To register for the walk, please visit www.mnda-eastkent.org.uk/walk2018 , complete the form, then follow the link to Just Giving to pay your entry fee of £10.

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

Should you experience any difficulties please email webmaster@mnda-eastkent.org.uk

The route is shown on the map above.

Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:

25 mile walk training programme download PDF

13 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

Flyer download

We thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent

 

Tenterden 500K Static Cycle Ride – POSTPONED

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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.

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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.

The cycle ride will take place at Tenterden Leisure Centre, Recreation Ground Road, Tenterden, TN30 6RA.

You can donate online at JustGiving.com/Tenterden500K

Silence Speaks at QEQM Hub

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

Katy Styles Mark Styles Chrissie Batts and Judy Keay

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.  

Chrissie Batts Mark Styles and Judy Keay

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

Sally Smith and Chrissie Batts

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.

 

 

All Party Parliamentary Group on MND Reception

Together with branch and group members of the MND Association from around the country, Clive Hudson chair of the East Kent Group and Judy Keay, Association Visitor Coordinator attended the Parliamentary Reception in London on 17th October, 2017.

Katy Styles Rosie Duffield MP and Judy Keay

Also attending were Katy and Mark Styles, campaigners for East Kent Group. At the Parliamentary Reception, the All Party Parliamentary Group (APPG) on MND launched their report on PIP – Personal Independence Payments. The report highlighted the problems that people living with MND are having with reassessment of their benefits.  

Powerful speeches were given by Chris Evans, the Vice Chair of the APPG on MND, by Rob Owens a person living with motor neurone disease, Patron of the MND Association Charlotte Hawkins who spoke about her father who had died from MND and the need for equipment and benefits to be timely. Finally, the Minister of the Disabled, Penny Mordaunt spoke about her department and what it was doing to change how information on people was gathered and used. 

Many people had emailed their MPs to attend the event, over 50 MPs and Peers attended on the day. Rosie Duffield MP for Canterbury and Whitstable attended the event to meet Katy, Mark and Judy who live in her constituency.  

MPs will be asked to write to the Minister, Penny Mordaunt to highlight the issue of reassessments of benefits for people living with progressive, degenerative diseases.  

Another big part of the day is for people living with MND, their families and carers to meet with other supporters and catch up.

Katy said “It’s so important that people living with MND, their carers and families, together with Association supporters meet with MPs and share their personal stories. Every time someone shares a story this makes a big impact on an MP or Peer. If we keep sharing these

Read more about the event, and take a look at some of the social media highlights of everything that happened. You can also catch up with the speeches from the day and watch our video of volunteers speaking to MPs.

 

 

Support Meeting 14th October Thanington, Canterbury

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.

Dawn Cockburn addressing the meeting

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.

We would like to thank Dawn and Julie for an excellent presentation.  You can find out all about the Harmony Therapy Trust at their website http://theharmonytherapytrust.org.uk

Should you feel you might benefit from a therapy provided by Harmony Therapy Trust, please contact a medical professional such as your doctor or MND nurse who will need to complete the application, which can be found here http://theharmonytherapytrust.org.uk/files/5314/9949/9161/2017_REFERRAL_FORM.pdf

Clive with the two awards

During the meeting we were able to exhibit the KM Charity Mark earned by MNDA East Kent for 2017. The Charity Mark was presented to 50 local charities who have made a substantial contribution in Kent.

Clive Hudson was also awarded a Brain and Brawn Triathlon Award for participating in a minimum of 3 KM Charity Team events in 2017, raising money for the MNDA in East Kent.