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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.
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.
I always come away thinking how much the Association has done in the previous year, as highlighted by the Impact Report and I am always grateful to our many supporters, fundraisers, volunteers, campaigners and staff who all help get us there. The Impact Report is here https://www.mndassociation.org/about-us/a-strategic-framework-for-the-future/impact-report/
Next year maybe I’ll see you there.
Katy Styles, Trustee MNDA and MNDA East Kent
On Friday evening when we arrived at the hotel, we had the opportunity to meet with some trustees and members of other groups, which was helpful in identifying some new ideas to work towards improving our activities in East Kent.
Saturday started with a short welcome speech by Alun Owen Chair of the Trustees of the Association.
Sally light then spoke of what we had achieved in 2016 and how we can help. She used 2 excellent graphics for this and these are reproduced below. These present the gist of her speech much better than any words.
Chris James spoke about the Association’s in complementing statuary services, collaborative working and the MND Costs Campaign.
Steve Bell spoke about the “What You Should Expect” an excellent small booklet giving brief details of what a pwMND should expect from the NICE Guidelines on MND and the Audit Tool to help assess how various bodies are doing in compliance with the guidalines.
We broke into groups which covered subjects like money for nothing fund raising, care update, the journey from awareness to action and local and regional finance.
We broke for lunch and the opportunity to look around the various stalls, we were particularly impressed by REMAP, a charity which makes custom made equipment to help disabled people live more independent lives. Please visit www.remap.org.uk
The AGM followed, during which our own Katy Styles was elected as a Trustee and Richard Coleman was elected as Chair of the Trustees.
The keynote speech was delivered by Professor Ammar Al-Chalabi. This speech was one of the most impressive I have ever been present at and I recommend everyone to look at it here https://www.facebook.com/pg/mndassociation/videos/?ref=page_internal click the link to MNDA Research under All Videos.
On 24th March, the first ever Kennedy?s Disease Day ? specifically for people living with Kennedy?s Disease, their families and carers, together with researchers and healthcare professionals took place in Derby.??
The day was run by UCL, the MND Association and UK Kennedy?s Disease. UCL run the Kennedy?s Disease Clinic and research into the disease at the Institute of Neurology, Queens Square, London.??
Kennedy?s Disease is supported by the MND Association. It is a slowly progressive degenerative disease of the motor neurons and has many symptoms that people with MND would recognise, together with some they wouldn?t. It causes mobility, swallowing and speech problems as well as breathing problems.??
The day was all about explaining the research that is currently going on, the support available from the clinic, the work of the MND Association and specifically MND Campaigns and how the charity Kennedy?s Disease UK are raising money for research into the disease.?
Katy Styles addressed the audience, which?was believed to have the?largest number of people living with Kennedy?s Disease present at one time, anywhere in the world. She spoke about how the Association currently supports people living with Kennedy?s Disease, through the work of branches and groups, through support grants, the work of MND Education, publications available and how MND Campaigns had made a big impact on getting more decision makers to understand what life was like for people living with KD. UK Kennedy?s Disease founder Kate Hopps also spoke about their fundraising work and Eric Mager, spoke about the Facebook Group he had set up to support people with KD and their families ? KDRA.??
Everyone came away from the day determined that this would become an annual event and thinking how they could now get involved with fundraising and campaigning to raise awareness of this disease.??
Thanks?to the MND Association for helping support this day.??
More about Kennedy?s Disease UK can be found here.??
During the week of 4th ? 7th April, Mark Styles, East Kent Group member curated the social media twitter account of NHS England ? called @NHS.
The idea of the account is that ordinary patients and NHS staff from across the country, get to tell their NHS stories for a whole week. They are able to post onto the twitter account from 8am to 8 pm each day.
Mark, who is living with Kennedy?s Disease, used his week to explain about the disease to the followers of this account ? explaining about the work of the Kennedy?s clinic. Indeed, we followed him, through a typical research day looking at the exercises he does at the clinic and even saw him with the staff who ran the MRI scans he undertook. Other parts of the week Mark tweeted about the importance of his multi-disciplinary teams ? featuring photos of his healthcare professionals throughout the week. He also used the opportunity to explain about the new NICE guidelines for MND and the Association?s MND audit tools. He spoke about his campaigning in parliament and the importance of the MND Charter. Finally, on the last day he returned to London, showing the ins and outs of getting on a train in a wheelchair and reminding us all about the importance of good mental health.??
At the end of the week, the NHS account is passed on to the next person and a set of the best moments of the week are put together by the communications team.
Mark?s week can be seen here.??
|Copy of Email from Madeleine Moon MP,
My name is Madeleine Moon, I am an MP and Chair of the All-Party Parliamentary Group (APPG) on MND*. I lost my husband to a form of MND, so I know first-hand the impact the disease has on the individual and their families.
MND can have a significant financial impact on families and access to benefits is therefore really important. ?However, we know that some people with MND find it hard to access these benefits.
The APPG on MND has therefore launched an inquiry?into access to?Personal Independence Payment (PIP), a disability benefit for people aged under 65. ?We want to gather evidence of the experiences of people with MND so that we can help improve the system.
|?Take The Survey|
|The deadline for the survey is Sunday 9 April 2017.
Please spread the word about the survey ? the more people with MND who share their experiences, the more likely we are to improve access for people with MND and their families.
Thank you very much.
Madeleine Moon MP
Chair of the APPG on MND
*The APPG on MND is a cross-party group of MPs and Peers with an interest in MND. The MND Association provides the secretariat to the Group.
PS If you would like a paper copy of the survey please contact Tina Downs on email@example.com.
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.
- Supporting people with cognitive changes and FTD
- Using the NICE Guideline to audit service quality
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.”
Financial impact of MND
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.
How can you take part?
There are two surveys:
Are you living with MND?
Complete the survey for people with MND
Or you can pick up a paper survey from your Care Centre, Branch or Group, or contact firstname.lastname@example.org.
Have you lost someone to MND?
Complete the survey for bereaved carers of people with MND
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 email@example.com or by phone on 020 7367 4200.