Support for you

Association Visitors (AVs) act as the main contact for people living with MND – this includes the person with MND, their family and carers – on behalf of the Association. After diagnosis, and from the time you have agreed that you would like to hear from an AV, they keep in regular contact by phone, email or visits. They offer confidential emotional support and accurate information to enable people to make informed choices.

What they can do:

• Explain the support and services the Association can offer, including the benefits of becoming a member
• Help identify problems as they arise and explore how these might be managed, outlining the sorts of options available and how to access them
• Develop and maintain relationships with the local branch or group
• Refer the family for support from a Care Service Navigator as and when required

Care Service Navigators (CSNs) are usually people who have worked, or are still working, as health and social care professionals. They are likely to have local knowledge of services and support and an understanding of how to access it.

What they can do:

• Support people affected by MND to navigate health, social care and other statutory services, third sector support and to encourage the provision of services that are designed to meet an individual's needs
• Support carers by promoting carers' assessments and making them aware of carers' organisations and services
• Support people to get the best out of personal budgets and other initiatives
• Support and signpost health and social care professionals to specialist training, education and information resources that will help them in their professional work with people living with MND

Area Support Coordinators (ASC) and Senior Development Managers (SDM) are employed by the Association.

The Area Support Co-ordinator (ASC) focuses on supporting, managing and leading volunteers to ensure that the best possible support is provided to people affected by MND, resolving local issues and developing and maintaining local relationships with Health & Social Care Professionals. Our ASC, Liz Cooper, works closely with branch volunteers and support volunteers, including AVs. She covers Norfolk, Suffolk and Cambridgeshire. The best way to contact her is via Connect.

The Service Development Manager (SDM) focuses on improving and developing services to ensure that better outcomes are achieved for people affected by MND, and on managing the resolution of complex issues for people with and affected by MND. Our SDM, Scott Maloney, covers the East of England.

Open Meetings are held three times a year. These are open to anyone with an interest in MND. They are an opportunity for meeting, socialising and sharing information and ideas. A meal is provided free of charge. We always provide a vegetarian option as well as a meal that may include meat, though if you have food allergies or other specific dietary requirements please use the Contact Us page. We try to provide a meal that is easy to manage for those with MND, however, should you have swallowing difficulties please advise us of your needs at least three weeks before an event so that she can contact the caterer to discuss what might be possible.

We always aim to find a speaker to give a short talk on an issue of relevance. Previous talks have included Research and Palliative Care, we are always open to suggestions if you think there may be a topic we should be covering. In addition to committee members there is usually a local Health and Social Care Professional, which may be the MND Coordinator, Respiratory Physiotherapist, one of the Consultant Neurologists, or a neurological nurse specialist depending on their availability. We are often joined by one of the volunteer Care Services Navigators.

The branch can help with the sourcing, supply or loan of specialist equipment. Recent requests to the branch have included help towards funding a powered wheelchair, a contribution towards the cost of respite care, contribution to the cost of home adaptations, funding for software to enhance communication, provision of an iPad to aid communication, installation and rent of a stair-lift, rent of a battery pack to power a non-invasive ventilator. In all that we do we are guided by the following principles from National Office: an MND Support Grant may be awarded where a need has been assessed by a health or social care professional and /or support would improve the quality of life and where one or more of the following applies:

• Equipment or a service provision is not the responsibility of a statutory service
• Delay in provision by the statutory services is unacceptable based on assessed need
• As a short term interim measure while awaiting provision by statutory services.

We would like to thank all those who raise money for us to help fund these vital provisions.

The MND Connect team offers information and support on all aspects of motor neurone disease, including symptom control, practical management, improving quality of life, clinical research and signposting to other organisations. Further information on the main MND Association website can be accessed by clicking on MND Connect.

MND Connect is available Monday to Friday between 9am to 5pm and 7pm to 10:30pm. You can call direct on 0808 802 6262 or e-mail: [email protected]

(Calls to this number are free from landlines and mobile phones within the UK and do not appear on itemised bills).

If you struggle with English please let the adviser know. Advisers can arrange for an interpreter to provide a simultaneous translation between your chosen language and English, though they many need to book a three-way call between adviser, interpreter and caller at a mutually convenient time.

The service is for:

• people living with MND
• carers
• family members
• health and social care professionals
• MND Association staff and volunteers or anyone else affected by MND.

We are here to support people living with MND and those who are currently (or have been) affected by MND. This includes carers, family, and friends. Often, people take on the role of a carer, but do not see themselves as a 'traditional' carer. There is lots of information out there to provide guidance, support and clarity when things may seem a little cloudy, or overwhelming.

Carer Assessment - a 10 page document outlining how to get your needs assessed as a carer and how this can lead to support.

Carers Quick Guide - Caring and MND: a quick guide.

Carers Matter Norfolk - local support and information for carers in the Norfolk area.

Suffolk Carers - local support and information for carers in the Suffolk area.

You can also explore the Association's main website. There is lots of information available at your fingertips. 

Should you require any further information or guidance, please contact MND Connect for support.