MND Association. Norfolk, Norwich and Waveney Branch


Branch support services



The Norfolk, Norwich and Waveney Branch offer a range of support services. If you would like to know more about how we may be able to help you or someone you know, please do not hesitate to contact us.

So many initials – AV, CSN, RCDA. Who should I turn to for help?


What follows is an attempt to answer the question.


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

Why two roles? The role of an AV is designed to be long term, the CSN provides short term and task focussed support to people living with MND, their families and their carers.


The MND Association provide training for both roles and ongoing support from the Regional Care Development Adviser. It must be noted that AVs and CSNs are volunteers and as such, these services can only be offered where they are available.


Regional Care Development Advisers (RCDAs) are employed by the Association and in our region the post covers, Norfolk, Suffolk and Cambridgeshire. They recruit AVs and CSNs and provide them with ongoing support and training. They can also offer support and advice directly to people living with MND.


In addition they work with local health and social care staff to improve the services for people with MND and their families locally. They also educate and raise awareness about MND by, for example, organising training and study opportunities for health and social care staff, and working with managers to influence the way services are provided.


What you can expect from your Regional Care Development Adviser

  • Detailed knowledge about motor neurone disease and its effects
  • Knowledge about health and social services in your area and MND Care Centres
  • Free and confidential support and advice that is tailored to meet your individual needs at the time you request it
  • Knowledge of how the Association can help you
  • Information about the support that is available in your area by Association Visitors and/or support group meetings
  • Signposting to other services and other sources of help
  • Information about other sources of help, advice and support that may be available in your area
  • Acceptance and respect for your choices and wishes

To summarise – if you have an AV they can always advise you and direct you to a CSN where it would be helpful. You can always contact your Regional Care Development Advisers, Liz and Lindsay, directly by telephone or email, though as they job share and work away from the office, you may have to wait a few days for a reply.



Support Meetings


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 contact our secretary, Helen Devlin. We try to provide a meal that is easy to manage for those with MND, however, should you have swallowing difficulties please advise Helen Devlin 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 Personal Independence Payments and Palliative Care. In addition to committee members there is usually a local Health and Social Care Professional, which may be the MND Coordinator, one of the Consultant neurologists, or a neurological nurse specialist depending on their availability. We are often joined by one of the Regional Care Development Advisers and a volunteer Care Services Navigator.


Coffee Mornings are held twice a month in each of two venues - except in December. These tend to be smaller more informal functions, at easily accessible venues, with the intention that people can drop in for as much or as little time as they like either to socialise, exchange ideas or ask for specific advice. There is no agenda, but hopefully a chance to sit and chat over a cup of tea or coffee (people usually pay for their own). Current carers, people who have been carers and people with MND are very welcome to attend. If people feel this may be of interest they can just come along on the day.


The venues we currently use are Notcutts Garden Centre cafe in Norwich, and Cherry Lane Garden Centre in Fritton near Great Yarmouth. Please see the upcoming events section for details of the next planned coffee morning.




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.