Bereavement: How the Association can help

During 2018, the Association reviewed what support we can offer to those bereaved through MND. Some research was undertaken including meeting with 3 specific support groups for past carers as well as meeting with some individuals. The findings have now been compiled into a report and an action plan developed.

What we do know is that many volunteers come to the Association following the death of a loved one or close friend and remain as volunteers for many years afterwards. It is therefore paramount that we continue to support people with MND and their carers as the latter can become our volunteers of the future.

Two surprising findings related to support from Association Visitors (AVs) and on-going membership of the Association. Members of the support groups reported differing beliefs on how long support from an AV can continue post bereavement, with figures ranging from support stopping immediately to anywhere between 3 and 9 months. In fact, there are no hard and fast rules at all for on-going support post bereavement and such support therefore should be sensitively agreed between the person bereaved, the AV and the Regional Care Development Adviser (RCDA).

With regards to Association membership, many past carers believed that this stops at the point of bereavement of the person with MND. This again is not accurate as membership for past carers is for life, or until the carer rescinds that membership.

The Association has also introduced an extension of its carers and children and young peoples grants for up to 1-year post bereavement. Since the introduction last August, we have awarded 15 such grants to past carers, which were mainly used for spa sessions, complementary therapies and short breaks. 2 grants were awarded to children and young people post-bereavement, for assistance with school trips. We will continue to monitor and analyse all such spend.

The Association website has recently been overhauled and re-launched. We have been able to revise our content relating to bereavement and during this time through our care Information team have also re-launched our guide to bereavement.

We are currently looking at the feasibility of developing a call back service for those bereaved through MND – most likely through our MND Connect team. This would help to ensure that those bereaved feel able to stay in touch with the Association and access its support, should they choose to do so. Equally, we are also looking at the possibility of developing a specific theme for those bereaved on our Forum.

Whilst the Association does not offer direct counselling, we are looking at partnering with Charities whose skills lie in this area. The charity, At A Loss, features on our website as a source of support for those bereaved. It has a resource that identifies all local sources of support based on the entry of a postcode. We are in the early stages of developing links with the Much-Loved network and with Sue Ryder.

This is just the start of our extended support to people bereaved through MND. If you have further ideas and suggestions please don’t hesitate to contact Steve Bell via email at

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262