Post bereavement support project

As you may know, the Association is looking at its current offer to carers bereaved through MND under the leadership of Steve Bell, Deputy Director of Care. Work around this is well underway and some further scoping is under way to help ascertain what other help and support is needed by bereaved carers…

A couple of years ago the Association extended its free membership for past carers to a lifetime membership. So, where past carers want to remain in contact with the Association they can do so without cost.

You will be aware that we have a carers’ grant that can be applied for to help current carers of people with MND. The terms of that grant have now been extended so that past carers may apply for the grant up to one-year post bereavement. This is available now, but will be formally launched in July along with other changes to the Support Grant system.

Currently the support provided to bereaved carers by AVs and other support volunteers varies according to local availability and demand for the service. As part of the project we will review how long support could continue post bereavement based upon individual need.

It is encouraging to see the development of a number of specific groups for past carers being provided by our branches and groups. They are proving to be a great source of mutual support and we know, many  people benefiting from them have kindly gone on to become AVs and undertake other forms of volunteering for the Association.

Steve is undertaking some focus group work with past carers to seek their views about the support they felt they received from the Association at the time of their bereavement and what, if anything, could be improved. Three focus groups have been set up to date, with the meetings due between June and September. A final report with recommendations will help to inform any further development work in 2019. We are also seeking links with other organisations who are experts in this field to see where we might partner with them and enable our carers to access their resources.

We hope this gives you a flavour of some of the work around the important issue of carer bereavement. If you wish to offer any ideas or comments, please contact Steve Bell by emailing

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262