A professional’s guide to end of life care in motor neurone disease (MND)
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Mo<strong>to</strong>r <strong>neurone</strong> <strong>disease</strong> (<strong>MND</strong>) is a progressive and term<strong>in</strong>al <strong>disease</strong><br />
that results <strong>in</strong> degeneration <strong>of</strong> the mo<strong>to</strong>r <strong>neurone</strong>s, or nerves, <strong>in</strong><br />
the bra<strong>in</strong> and sp<strong>in</strong>al cord. 1<br />
There is no cure for <strong>MND</strong>. Although the condition itself is unpredictable,<br />
the term<strong>in</strong>al prognosis is not. A third <strong>of</strong> people with <strong>MND</strong> die with<strong>in</strong><br />
a year <strong>of</strong> diagnosis and more than half die with<strong>in</strong> two years. 2<br />
This booklet is for health and social <strong>care</strong> pr<strong>of</strong>essionals who are<br />
work<strong>in</strong>g with people with <strong>MND</strong>. The aim <strong>of</strong> this booklet is <strong>to</strong><br />
encourage pr<strong>of</strong>essionals <strong>to</strong> discuss death, the process <strong>of</strong> dy<strong>in</strong>g<br />
and advance <strong>care</strong> plann<strong>in</strong>g, as soon as someone with <strong>MND</strong> is able<br />
<strong>to</strong> discuss the subject. By understand<strong>in</strong>g their needs, pr<strong>of</strong>essionals<br />
can support people affected by <strong>MND</strong> <strong>to</strong> prepare for <strong>end</strong> <strong>of</strong> <strong>life</strong>.<br />
Need <strong>to</strong> f<strong>in</strong>d out more?<br />
The <strong>MND</strong> Association supports pr<strong>of</strong>essionals <strong>to</strong> <strong>care</strong> for people<br />
affected by <strong>MND</strong> <strong>in</strong> a variety <strong>of</strong> ways, which <strong>in</strong>cludes provid<strong>in</strong>g:<br />
• a range <strong>of</strong> <strong>in</strong>formation and educational opportunities<br />
• local support and advice from our staff and volunteers.<br />
<strong>MND</strong> Connect<br />
Accredited by the Helpl<strong>in</strong>es Standard, our helpl<strong>in</strong>e <strong>of</strong>fers<br />
<strong>in</strong>formation and support by telephone and email – on<br />
0808 802 6262 or mndconnect@mndassociation.org<br />
Pr<strong>of</strong>essionals’ forum<br />
Visit http://pr<strong>of</strong>orum.mndassociation.org <strong>to</strong> share best practice<br />
with other health and social <strong>care</strong> pr<strong>of</strong>essionals who are car<strong>in</strong>g for<br />
people liv<strong>in</strong>g with <strong>MND</strong>.<br />
See page 30 for more <strong>in</strong>formation about how the <strong>MND</strong><br />
Association can support you <strong>in</strong> your role.
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