We need someone to act as our group correspondent, to respond to queries and direct emails to the appropriate member of our committee.
If you have the skills to send out agendas, take notes of meetings send out minutes, and a few hours you are willing to spare, we would love to hear from you.
Our meetings take place every other month in Canterbury.? The duties would be sending out agendas by email, attending meetings which last 2 hours and sending out minutes of those meetings by email.
2016 has been an interesting and successful year for MND Association East Kent Group.
Campaigns Contact volunteers Greg Broadhurst (Manchester Branch), Colin Hardy (Northumberland Group), David Setters (East Surrey Branch) and Katy Styles (East Kent Group) were joined by Helen Setters and Mark Styles at the lobby.
The year started with a party at the Wrotham Arms in Broadstairs, followed in very short order by a Support meeting in Folkestone and a visit to Westminster where 6 people affected by MND addressed some 42 Parliamentarians.
Young Carers Awareness Day was also in January, which was followed by the Burns Night Supper at BinElla in Faversham.
Mark and Katy Styles spoke to the Psychology Society at the University of Kent on Tuesday 23rd February.
During April The Campaigning Toolkit, the brainchild of East Kent’s?Katy Styles was launched, A Masquerade Dinner in Tenterden raised almost ?10,000 and the?South Coast Road?Trip tee shirts went on sale, together with announcements of the events in East Kent.
A brilliant Spring Lunch was held in May and the press release for the South Coast Road Trip was sent to all media outlets.
June was the month of the South Coast Road Trip with 19 events in 17 days as Clive and Lynn Hudson travelled by public buses from Broadstairs to Land’s End, raising over ?10,000 and also creating great awareness of MND in the process.
Sally Light with Signed T ShirtHerne Bay Clock Tower
The Clock Tower in Herne Bay was lit up with MND colours and MND awareness day and The Podplus 5K run was yet again a success was a successful run raising funds for MND in East Kent.
Campaigning were busy at Parliament for a Carer’s Week Reception representing pwMND and their carers.
Daren with enormous carp
In August Summer was in the air with great music at the Broadstairs Summer Hop at The Pavilion, which followed on into the evening at the Wrotham Arms.? Daren Edwards was catching enormous fish in France and the signed road trip shirt went on display at David Niven House.
Katy Styles addressed The National Council for Voluntary Organisations (NCVO)? Campaigning Conference on September 3rd, being the only volunteer to address the meeting.? On the same day Judy Keay attended Project Respect, which?is the MND Association?s Equality, Diversity and Inclusion Strategy ? and?all members are encouraged to help shape it.
Clive Hudson, Mark? and Katy Styles attended the annual conference of the MND Association held in Derby on Saturday 10th September.? Please see https://mnda-eastkent.org.uk/wordpress/?p=1849 for full details.
Anne Pomeroy
Anne Pomeroy walked 100KM along the Thames raising ?1650.93 for MND Association East Kent.
The Co-op run from River to Mill Hill was on 30th September.? The run followed the diagnosis of MND given to local lady Linda Clarke.? The run raised over ?1000 for MND. See https://mnda-eastkent.org.uk/wordpress/?p=1876 for more information.
We held a volunteer recruitment day in Canterbury in early October, the event was an interesting experience and we learned much about how to present any future recruitment day. Unfortunately it was a foul day and we were not successful in gaining any new volunteers.
Judy Keay, Chrissie Batts and Mark and Katy Styles attended a Parliamentary Reception on October 18th, representing the East Kent Group.
They all spoke with?Julian Brazier, MP for Canterbury and Whitstable who attended and promised to follow up the points made at the reception, and other MP’s at the reception. ?Mark and Katy also spoke to the Minister, Penny Mordaunt about their concerns .
Our year ended by funding the installation of a hoist for Martin living with MND, making a contribution to our CEO annual appeal and enjoying a wonderful Christmas Lunch at Yarrow Hotel in Broadstairs.
A short while ago MND Association East Kent were able to support a person living with MND, by funding the installation of a hoist to improve quality of life when travelling.? Ela Miller sent us this letter which we publish in full with some photographs of the hoist.
I would like to thank?MND Association East Kent?Group and all those involved in helping us with the hoist fitting. Martin is in his 4th year of living with MND and found being in the back of the van when travelling quite difficult and always having to sit in the back with his wheel chair, when I turned the van it was hard for Martin to adjust himself back into a straight position. It?was very?uncomfortable for him.
We started looking for other options, which to our surprise we found on the Internet a Milford lift second hand, what a great idea. ?Martin is now be able to sit in the front passenger seat of the car, all I have to do is put the sling on him and press the button of the lift and automatically it lifts him in the car.
I would like to thank the?MND Association East Kent Group?for helping us with the cost of fitting the Milford lift.?It was expensive to fit it in the car as it had to be done professionally.
The lift is fantastic and it makes Martin feel human again instead of being put in the back of a van and feeling singled out .
Thank you so much to MND Association East Kent Group for making this possible.
Sally Light Chief Executive Officer of MND Association makes an annual appeal to all Branches and Groups to support various activities.? In 2016 the following options were presented for consideration.
Supporting people with cognitive changes and FTD
We are hoping to fund the development of a toolkit to assist clinical staff in the support of people with cognitive impairment and frontotemporal dementia. We know that cognitive changes associated with MND in some people can be a very difficult added burden for individuals and families and we are keen to help clinical teams to offer more support. This pioneering work is being carried out by Prof Eneida Mioshi and colleagues at the University of East Anglia
Using the NICE Guideline to audit service quality
Ensuring the NICE guideline is a real lever for improvement in services for people living with MND is one of our highest priorities for the next few years. We have written out to all hospitals to ask them how their services measure up to the guideline. The next phase of our work is to develop an audit tool that services will use to benchmark their own performance. We will use this to measure the quality of our own care centres and networks but also to influence those services that we do not fund and/or may have concerns about. Where problems are identified we will work with the local team to support improvement. Single point of contact for wheelchair or AAC problems
Over the last couple of years we have funded two co-ordinators to act as a single point of contact for people with problems relating to wheelchairs or MC. This funding has come from the Department of Health wheelchair grant and Ice Bucket Challenge (IBC) monies – both one off, non-recurrent funding sources. These services have proved so useful that we want to continue them and are now looking for sustainable ways in which to fund them. In the last two years these two services have helped 1,095 people find better solutions to their equipment problems. Welfare benefits advice
Over the last 18 months we have been piloting a welfare benefits advice service using money from the IBC. We now have pilot services in Manchester and the East Midlands and early feedback is that they are very successful in helping people with MND to access the welfare benefits to which they are entitled.
In Manchester the service has generated the annual equivalent of ?500,000 for people with MND and their families. Our ultimate aim is to find the resources to expand the service to the whole of England, Wales and Northern Ireland. Our 40th Anniversary
In 2019 our Association will celebrate its 40th birthday. It is an amazing achievement to have grown to the organisation that we are today from the small group of committed volunteers that first got together in 1979. We plan to celebrate all that we have achieved in those 40 years and acknowledge those who have helped make it all happen. In 2017 we would like to start to collect stories and recollections from those volunteers that have been with us from the early days of the Association. We also want to engage with different groups and individuals on what activities we might undertake to mark the anniversary and how it can be used to increase awareness and support. At the trustees’ discretion
We know that some branches and groups prefer to leave funding decisions to our trustees. We are due to publish our new 2017-21 MND Association strategy at the end of this year and so our trustees would be pleased to allocate any contributions in this category to our strategic priorities. As last year, if the total funds that you contribute exceed the costs of any of the above projects the surplus monies will be put to very good use on one of the other projects or a project which the trustees deem as a high priority.
East Kent Group Decision
East Kent Group?decided the most relevant?to support the following with a contribution of ?2500 to each.
We had a wonderful lunch at the new Yarrow Hotel in Broadstairs on Saturday 3rd December 2016.
We had?36?guests?plus a couple of delightful babies.
The Yarrow provided an excellent meal starting with Smoked Salmon, followed by roast turkey with all the trimmings.? Our meal ended with Christmas pudding, tea and?coffee.
We were visited by The Canterbury Ladies Choir who sang some beautiful carols, some of which the guest were encouraged to join in.
As ever we had a fantastic response to our request for raffle gifts.? We decided to held both a tombola and a raffle to avoid the raffle taking too long to complete.? This was great success.
We had been donated a beautiful crystal necklace which we auctioned.? Lynn Hudson was the auctioneer and the necklace was bought by Philomena Lawrence.
Thanks to the wonderful support on the day and a generous donation by Pat McCabe,?we made a small profit which will be used to raise more funds in 2017.
Tube feeding is sometimes suggested in MND.? If you want to learn about tube feeding the following link takes you to a web site, which is very good and shows all?the options available.
The MND Association have commissioned a piece of work to show that being diagnosed with MND/Kennedy?s Disease has a huge financial impact on families. This work is being undertaken by DEMOS and was started following East Kent Group?s Katy and Mark Styles?s speech to the All Party Parliamentary Group on MND in Parliament this time last year. There are two surveys currently running. One is for people living with MND and the other is for bereaved carers of people with MND.
Katy said ? It is a sensitive subject to speak about finances to anyone. I know, first hand, that unless people with MND/ Kennedy?s Disease and their families speak about their real day to day financial worries, decision makers like MPs and councillors will never understand all of the extra costs that MND brings. Seeing the penny drop on the faces of those in parliament, when Mark and I spoke about the adaptations we had made to our home, talking about income we do longer had and equipment we had to buy ourselves, made a collosal difference to those present. I so want this report to have lots of personal stories like ours about the financial difficulties we have to face in light of the disease. Our personal stories of our own financial impact are so powerful and need to be recorded.”
We believe that MND can cause a huge financial impact on people living with MND and their families, but we?d like to understand more about that and what needs to be done to support them.
The MND Association has partnered with Demos (an independent think tank based in London) to research the financial impact of MND, and raise the public profile of this important issue. We?ll be publishing our findings in 2017 and using them to inform our work with key stakeholders in health, social care, local government and national politicians.
While a very sensitive topic, we think it is important to consider the financial impact alongside other impacts (e.g. on health and wellbeing) that bereavement from MND has on people?s lives.?
Surveys need to be completed by Friday 27 January 2017.
We would really appreciate your support with this important research.
If you have any further questions about the project, please contact Simone Vibert at Demos by emailing simone.vibert@demos.co.uk or by phone on 020 7367 4200.
The East Kent Group were represented at the Association?s Parliamentary Reception on Motor Neurone Disease. The aim of receptions is to engage with MPs and Peers and to speak to them about an issue as well as get more MPs to understand what living with MND is like for the person, their families and carers. This year the issue was the Attendance Allowance ? this benefit is for people over 65. The idea proposed is for local authorities to administer this which the Association is concerned about. The other issue was asking that the change to re-assessment of people with progressive illness claiming Employment and Support Allowance was extended to all benefits.?
Association members had been asked in advance to ask their MPs to attend via an e-action. Over 800 people had taken part in the e-action and over 50 MPs attended on the day.??
As well as listening to their constituents, MPs were treated to speeches from Dr Jane Hawking. She spoke movingly about the battle with MND the person has, but also the huge battle financially the families of people living with MND have. Sarah Ezekiel, living with MND, also spoke moving about her story and her latest assessment of her care needs.?
Judy Keay, Chrissie Batts and Mark and Katy Styles were present representing the East Kent Group. Julian Brazier MP for Canterbury and Whitstable attended and promised to follow up the points made. Mark and Katy also spoke to the Minister, Penny Mordaunt about their concerns and other MPs they had met before at the All Party Parliamentary Group. The Minister stayed for the whole event and spoke to many people living with the disease.
Follow up meetings were also organised with MP for North Thanet, Sir Roger Gale and the MP for Folkestone and Hythe, Damian Collins.?
Our support meeting at the Iron Room in Broughton Lees started on the? wrong foot, when due to some mix up the hall was not opened for us and we were unable to contact the managers to gain access.
Fortunately for us it was a beautiful day and we congregated in the car park in glorious sunshine while trying to find a way to salvage the meeting.
The owners of The Flying Horse, a short walk across the village cricket pitch invited us to use the bar and we had the most wonderful meeting.
The pub provided coffees, teas and stronger beverages?as requested. ?Lots of happy conversation and lots of laughter ensued.
We have been invited to use the Flying Horse for future meetings and the consensus was that it was a perfect venue.
