CEO Appeal – 2016

Sally Light – CEO MND Association

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


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