A professional’s guide to end of life care in motor neurone disease (MND)
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Regional <strong>care</strong> development advisers<br />
Our network <strong>of</strong> regional <strong>care</strong> development advisers (RCDAs) have<br />
specialist knowledge <strong>of</strong> the <strong>care</strong> and management <strong>of</strong> <strong>MND</strong>. They work<br />
closely with local services and <strong>care</strong> providers <strong>to</strong> ensure effective support<br />
for people affected by <strong>MND</strong>, tra<strong>in</strong> health and social <strong>care</strong> pr<strong>of</strong>essionals<br />
<strong>in</strong> <strong>MND</strong>, and are champions at <strong>in</strong>fluenc<strong>in</strong>g <strong>care</strong> services.<br />
<strong>MND</strong> <strong>care</strong> centres and networks<br />
We fund and develop <strong>care</strong> centres and networks across England,<br />
Wales, and Northern Ireland, which <strong>of</strong>fer specialist cl<strong>in</strong>ical expertise<br />
from diagnosis onwards.<br />
Branches and groups<br />
We have volunteer-led branches and groups nationwide provid<strong>in</strong>g local<br />
support and practical help <strong>to</strong> people with <strong>MND</strong> and their <strong>care</strong>rs.<br />
Association visi<strong>to</strong>rs (AVs)<br />
Association visi<strong>to</strong>rs are volunteers with experience <strong>of</strong> <strong>MND</strong> who<br />
provide one-<strong>to</strong>-one local support <strong>to</strong> people affected by <strong>MND</strong>.<br />
Other organisations<br />
Childhood Bereavement Network<br />
Provides guidance, <strong>in</strong>formation and directions <strong>to</strong> support services.<br />
020 7843 6309 or www.childhoodbereavementnetwork.org.uk<br />
Cruse Bereavement Care<br />
Cruse is the largest bereavement charity <strong>in</strong> the UK, <strong>of</strong>fer<strong>in</strong>g<br />
<strong>in</strong>formation and support. 0844 477 9400 or www.cruse.org.uk<br />
Dy<strong>in</strong>g Matters<br />
This organisation <strong>of</strong>fers a wide range <strong>of</strong> resources <strong>to</strong> help people start<br />
conversations more easily about death, dy<strong>in</strong>g and bereavement.<br />
0800 021 4466 or www.dy<strong>in</strong>gmatters.org<br />
The Gold Standards Framework<br />
A standard for the improvement <strong>of</strong> <strong>end</strong> <strong>of</strong> <strong>life</strong> <strong>care</strong>.<br />
www.goldstandardsframework.org.uk<br />
The National Council for Palliative Care<br />
A charity support<strong>in</strong>g those <strong>in</strong>volved <strong>in</strong> palliative, <strong>end</strong> <strong>of</strong> <strong>life</strong> and<br />
hospice <strong>care</strong> <strong>in</strong> England, Northern Ireland and Wales.<br />
020 7697 1520 or www.ncpc.org.uk
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