Sites relating to motor neurone disease


Riluzole is a sodium channel blocker and its use has been shown to be associated with a modest prolongation of survival - which for any sufferer would seem to make it worth a try.

But NICE has, of course, issued guidance on its use, and you can find it at this address.

The guidance is reasonably concise and digestible. Given that the drug is hugely expensive, you can imagine that NICE only lets consultants prescribe it. GPs are clearly not to be trusted to interpret the advice or know what is best for their patients.

But why, oh, why have they chosen to present the guidance in black and yellow? It is, as my maiden Aunt Nellie would say, 'simply frightful'.

It also says the guidance will be updated in 2004, but the web page is dated 2006 and there is no sign of the update.

Why go there: the official line.
Downside: looks awful.
Information from: NICE.


This page is intended to provide revision notes for occupational therapists, but I recom- mend reading it because it reminds us of all the possible difficulties that patients with MND might encounter. It also informs GPs about just how essential a multidisciplinary team is in the management of such debilitating diseases.

The page starts with a brief resume of the condition, but you can skip straight to the section headed 'Implications for occupational therapy'.

It is just one screen, and there's no need to go beyond this, so will only take five worthwhile minutes to read and digest.

Why go there: will help you be prepared.
Downside: none.
Information from: Occupational Therapy Direct.


Percutaneous endoscopic gastrostomy (PEG) is a technique that most GPs will be aware of, but might have little experience of.

This excellent two-page PDF is written as a fact sheet for patients who are going to have a PEG tube inserted. But there is much here to instruct the GP, including care, replacement, and dealing with problems such as blockages and skin infection.

You really do not need to know a great deal more about PEG than the information you will find here.

Why go there: a simple guide.
Downside: no illustrations.
Information from: Digestive Disorders Foundation.


It is all too easy to forget, when you live on the South coast and have access to most of the facilities and organisations concentrated here, that others elsewhere are not so fortunate.

Scotland is a large country with widespread population centres, and people living there need services tailored to their particular needs. I therefore make no apology for concentrating on The Scottish Motor Neurone Disease Association whose raison d'etre is to help the existing sufferers and 120 new MND patients diagnosed each year in Scotland.

This good-looking and easy-to-navigate site refers to specialist care teams, equipment such as lightwriters for those with communications difficulties, and a small grants scheme to ease financial stress. The money can be used for purposes such as helping carers with holiday costs or for buying equipment.

Why go there: essential if you are in Scotland.
Downside: none.
Information from: Scottish Motor Neurone Disease Association.

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