New and updated care resources

Revised End of life guide

Our End of life guide for people with MND has been fully revised, including updated content and references to the NICE guideline on MND. Families should always be encouraged to discuss end of life decisions with relevant health and social care professionals, but the guide helps facilitate these sensitive conversations.

Some families may find it distressing to receive this type of information without warning. However, the earlier a family feels ready to access this information, the more benefit they are likely to achieve. End of life information should be supplied when requested by an individual or offered as support when someone asks questions about future care. It can help to explain that the guide contains sensitive content about death and dying. Our flyer about the End of life guide can be used to gently introduce content prior to ordering the full copy.

You can download the End of life guide here. The End of life guide can be downloaded as a standard PDF, an interactive PDF or as separate sections if people wish to access content gradually.

We have also recently launched information sheet 8C – Withdrawal of ventilation, which provides additional detail about stopping the use of ventilation with MND. Produced in liaison with LOROS, this sheet is a companion piece to the End of life guide, based on patient feedback gathered to support new guidelines for professionals.

Please order as needed, as stockpiling can force a reprint and cause wastage. Thank you. Previous versions of the End of life guide should now be discarded, as the content is out of date.

Revised Benefits information sheet

We have recently revised information sheet 10A – Benefits and entitlements. This sheet has been one of our largest information sheets for some time and was becoming unwieldy. This level of detail was no longer essential, as we now have a new Benefits Advice Service to provide personalised support.

In this revision, we have condensed the information so that the length of the information sheet is more in line with the rest of our range. We have also categorised the benefits, rather than listing them alphabetically and guided people to our Benefits Advice Service.

Information sheets can be viewed and downloaded here.

To request hard copies of any of the resources mentioned above please contact the Care Admin team:
Telephone: 01604 611685

22 September 2017

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262