After completing the training required by David Niven House, (MND Association National Office), and having received a referral from The Regional Care Development Adviser, or a social and health care professional, contact is made with the individual with MND or the family in order to visit and support the whole family.

Because we have a little more time than most, it is extremely valuable to observe the current situation and signpost areas where help can be obtained. An AV can support one or more people with MND depending on their time and how they feel. It would be wonderful if people would be willing to indicate their desire to fulfil this role. It would mean that no one dealing with MND has to do it on their own. It is also an opportunity for people with MND to ‘off load’ any worries or concerns throughout this difficult journey.

Most, if not all families welcome this support, and if it is initially refused, it is dependent on the social and health care professionals (HSCP’s) involved to maintain a drip, drip approach. Then the service can be accessed at any time.

It is also an opportunity to liaise with other HSCP’s, as equipment is often needed almost immediately, and in a timely fashion. If this is not the case, needs will have changed and the original equipment will not be appropriate – frustrating for both parties.

You only have to imagine how you would feel in a similar situation, and if you are not familiar with the ‘system’, how would you know which way to turn? There is a wealth of information available. If we are unable to answer a particular question, we know someone who can. MND CONNECT 08088026262 (helpline and information service) is a resource available to everyone, and is also manned by trained volunteers in the evening (7-10.30).

If you feel this is a role for you, very rewarding and satisfying, please contact us