1 in 400?

[nunhead_man]

Good morning all,

Is it my imagination but was somebody around here suggesting that motor neurone disease affects one person in 400 in the UK population?

I ask because I was looking at this the other day....

https://www.mndassociation.org/research/mnd-register-for-england-wales-and-northern-ireland/

Where it says that the expectation is that there are about 5000 people diagnosed at any one time which is obviously much less than one in 400 given UK population is about 60 million?

Can someone explain where the one in 400 comes from?

[Kayleigh]

Hello Andy. I have read on the MNDA website and on Lee Millard's blog that it is now 1 in 300, rather than the 1 in 400 quoted previously to that. Best wishes. Kayleigh

[Terry]

Hi Andy;

I don't want to think about it to much but the 2 figures could marry up.

5,000 people diagnosed are 1 : 400, so times them together it Makes two million people.

But Mnd people live on average 3 years and normal life expectancy is around 75. So during a normal life span 75 divided by 3 mnd people gives you 25

If you then multiply 2,000,000 by 25 you get 50 million.

Quite close really.

If you understand my logic, you too will need some aspirin too.

Love Terry

[nunhead_man]

Good afternoon Kayleigh

Yes I think it is this - https://onein400.com

Or rather – this https://onein400.com/facts/

I will have to read it carefully to work out how you get from 5000 to 1 in 400!

Best

Andy

[nunhead_man]

Hi Terry

50000 people diagnosed are 1 : 400, so times them together it Makes two million people.

Your logic does not give me a headache.

But the step I do not understand is this one;

"But Mnd people live on average 3 years and normal life expectancy is around 75. So during a normal life span 75 divided by 3 mnd people gives you 25"

25 what? Years?


Best

Andy

[Terry]

Hi Andy;

I was afraid you were going to ask questions, more aspirins.

5000 was just a typo. easy bit over. LOL

I think that I am right, as always but to explain it is not easy.

If a person lives to be 75 and had consecutive friends with Mnd one after the other living 3 years each. He would know of 25 people that live with Mnd during his life time.

But at any one year of his life he would only know of 1 mnd person.

That is why I'm multiplying it by 25, 25 is just a factor.

I'm sure that I can explain it better Andy but life is to short and I've run out of aspirin.

Sorry, Love Terry

[Ellie]

Andy, we've had a National ALS Register in Ireland since 1994, collating all types of data and my Neurologist, Prof Orla Hardiman, a worldwide expert on ALS, has written extensively about this subject.

The Lifetime Risk used to be c. 1/400 but has been steadily increasing over the years due to an ageing population and better diagnostics and disease awareness, and now is much closer. to 1/300.

The Prevalence of ALS is c. 8/100,000 - that's where the UK figure of c. 5000 comes from. Prevalence refers to the number of people alive at any one time with an ALS diagnosis. It is low due to the high fatality rates. This figure is set to increase, again due to an ageing population, but it has been creeping up due to more people opting for interventions such as NIV and feeding tubes, as well as being cared for in a multidisciplinary setting.

Love Ellie.

[Kayleigh]

Number crunching is not really my thing (I am more of a words person - which you may have gathered already from the length of my posts!).
Anyway, I do not have much confidence in the statistics that are published. I have read on the MNDA website that the figures are approximate because there is no single resource that collates the actual total number of people with MND in England, Wales, Scotland and Northern Ireland. There is the MND Register but that is for people with MND to register on voluntarily. I take it from what the MNDA are saying, the NHS does not have one overall figure for the number of MND patients in its different NHS regions - I may be wrong? As far as I am concerned, I do not think that MND is as 'rare' as it is supposed to be and this underestimation results in a tragic lack of funding into research into MND and lack of funded resources for MND patients (such as lack of funding for house adaptations, highlighted again on this forum today.)

Anyway, now back to the 'complications' of BREXIT on the TV.
Kayleigh x

[nunhead_man]

Good afternoon Ellie

Aha! Prevalence versus lifetime risk.

Got it!

Best,

Andy

[nunhead_man]

Good afternoon Kayleigh

the NHS does not have one overall figure for the number of MND patients in its different NHS regions

Interesting - surely the Association could work their way around the various centres - for example in South London I think we only have two - I guess that covers about 2 1/2 million people - one being Kings in Denmark Hill.

So I wonder if we could do a south London estimate?

This might quite interesting if this was different to other areas as it could point to geographical differences of some sort.

I'll think on.

Best

Andy

[Terry]

Hi Kayleigh and Andy;

As you probably both gather, I am more a numbers person than a written words person, or a spoken words person now.

It is fun using a talking machine when you are a bit dixlictic????????????

Glad it sort of makes sense and there's no more questions Andy.

Love to you both, Terry

[Kayleigh]

Hello again Andy,
I expect that the reason why the actual numbers are not collated is the lack of funding for it to be carried out? An issue with using numbers from the MNDA is that not everyone with MND is registered with them and not everyone goes to one of its centres or regional meetings (if that is what you mean by MNDA centres?).
Kayleigh

[Ellie]

Kayleigh, MND falls into the definition of being a "rare" disease because of its low Incidence rate of 2-3 per 100,000 person-years - again due to high mortality over a low number of years. (This takes me back to my Uni days and those boring Quantitative Analysis lectures )

There is a disconnect between the lifetime risk and prevalence/incidence because of the high mortality and how data is shown and interpreted.

Being classified as a rare disease does carry benefits in terms of getting orphan drug status from the EMA, and sometimes extra funding etc.

Enjoy your politics watch!

Love Ellie.

[nunhead_man]

Hi Kayleigh

Guess you are right about funding.

An issue with using numbers from the MNDA is that not everyone with MND is registered with them and not everyone goes to one of its centres or regional meetings (if that is what you mean by MNDA centres?)

No what I mean by MNDA centres are those hospitals that specialise in treating those patients on the assumption (heroic) that everybody with MND ends up there.

For example around here I started out at Lewisham General via my GP but was referred on to Kings as they are the south-east London specialists in neurological disorders including MND

Best

Andy

[Ellie]

Yep, we get all the same TV channels here on Sky or Freesat etc.

Our shopping centres would be very familiar to you too - Ireland is very similar but very different to England !!

PS. Aren't you too young for Countdown Kayleigh