Forum

The answer to this question obviously doesn't matter

The meeting about LDN is great, the profile of disability and MS is at an all time high,BUT why won’t this or any previous Government release an accurate figure of how many MS club members there are in the UK. In this hi-tech information super sess pit age it is so easy.

Shouldn’t the MS Society be pushing for this? Nope,'cos it has been in the pockets of various Governments for so long that they do exactly what they are told.

I’ve thought this piece of data is important for 11 years now,but nobody else appears interested. The figure of 80,000 apparently first appeared in 1958. There are always complaints about the provision of MS Support Services on here. How can the services be right if they don’t know how many customers there are ?

Wb

I think you’ve answered your own question. “They” can’t answer, because they don’t know. There’s no compulsory registration of MS cases; it’s not a notifiable disease. So estimates are the best we’re ever going to have. As an aside, I’m sure this isn’t unique to MS. I doubt we know exactly how many people have diabetes, cancer, or heart disease. They will all be estimates as well.

Tina

Hi, I think Tina is right, “they” don’t know, so estimates are the best we are going to get. I guess someone could ask every neurologist in Britain how many ms parents they have and then add them all up. However neurologists will have other patients too with other diseases too and might not want to go through all their patients to give a number of those with ms, that would take time that they probably don’t have. But a bigger issue is probably the fact that there will be many patients who have suspected ms but haven’t been diagnosed, they might be in future or they might be diagnosed with something else. Then there wil be people who very probably have ms (one or more attack over a number of years) but no major lasting problems and some of those will be undiagnosed and some of those will probably not want to be diagnosed. I think the best we are going to get is an estimate, tbh. Cheryl:-)

Now there was me thinking that the whole point of the MS Register was to try and find out how many of us there are, with which variant of MS, and what medication we are on to try to do something about it.

You have signed up for it yourself, haven’t you?

Geoff

I believe that they have upgraded their figures from 80,000 to 100,000 now!

All I know is there seems to be a lot of people with MS in my area of the SE and many people that I know have relatives with the disease.

Wendy x

Yes apparently there are 100,000 of us now. One of the reasons given for the guess work is because the figure changes all the time as peoples dx changes,ie,dx with MS changed to ‘god knows, we don’t’ and vice versa. Although I do think in this day and age it wouldn’t be too difficult to give an estimated figure that was pretty accurate. And there is the MS Register, but I don’t know how many have signed up for it.

I was on the MS register earlier today - less than 10,000 have signed up. Pretty pathetic really :frowning:

Karen x

I thought you went on the register when diagnosed? Doesn’t the hospital declare this? Excuse my ignorance fairly new to this! Chis

All valid view points,but why only an increase of 20,000 since 1958 despite all the advances since then,the rise of medical techniques, information technology ,the media etc etc. Even then there must have been a huge amount of “We cannot be sure”,so nowadays the advances surely mean that the ratio of ‘not sure’,to ‘unlucky’ increases the number diagnosed.

Every PCT must have a number of definitely diagnosed,so 54 years ago this information was out there. To my mind it has been very convenient for the true figure to be ‘buried’. As for voluntary registration, why is there a need for this? Are there other conditions with the goodwill of the sufferers being required to get a total figure?The DWP must have figures on the diagnosed,that’s assuming people apply for their entitlement when they cannot work etc.

Until people start asking questions we will always be ‘small time’ with no appreciable increase in 50 years.

Wb

The fact that the number has gone up is likely a result of longer lives, but also an increase in diagnoses of MS. No one knows why MS is on the increase, but it is. The fact that the number has “only” gone up by 20,000 is likely to do with the fact that people die: for every one new MSer, there will probably be one who’s died. It will probably also have something to do with population dynamics. MS is normally diagnosed in early adulthood. Increase the number of adults in a population, increase the incidence of MS.

If a disease has an approximate incidence of 1:1000, one can expect a population of 65m to have approximately 65,000 people with that disease. However, the UK has a higher than average incidence of MS thanks to dodgy genes and dodgy weather. So we come in at approximately 100,000.

The DWP does not have data on who has MS. Why would they? When I applied for DLA, I put down 5 conditions. Which one should they record me under? The DVLA wouldn’t either because not everyone drives and not everyone tells them.

And why would PCTs have data on who has MS? As Tina says, it’s not a notifiable disease. And even if someone paid someone to look through every (hand-written!) medical file in the country they still wouldn’t know because then they’d have to check who was still alive, who was still living in Britain, who hadn’t had their diagnosis changed, etc.

So, what about going forward? Should these data be captured? Ideally perhaps, but only if someone has a bottomless pit of funding. First of all you’d have to pay for the software, then the hardware, then the people to use it all, then the people to use it forever after because it would need to be constantly updated. And how do we account for all those double/triple/etc entries? And now multiply that for all the different conditions out there - it wouldn’t just be a matter of checking for MS; we’d have to do it for everything. And then what would we do with the data anyway? Would it justify all that expense?

Epidemiologists have tried and tested methods for estimating the incidence of medical conditions. It’s not necessary to literally count how many people have something - there’s an established science that does it without that level of cost or effort.

That’s where the figure of 100,000 comes from. I see no reason to distrust it. Why would I? It’s probably right!

The MS Register is totally voluntary - you can sign up or not. Your choice!

It exists because, as Anitra has pointed out, MS is not a notifiable disease.

I rather doubt if anyone wants the true figure to be buried, as I cannot see why anyone would. One could make the same comment about Parkinsons, cerebral palsy, or (inter alia) any other neurological condition. If the information was available over 50 years ago, it would not have been in the hands of any PCT - since the PCTs were only created in 2002.

If you want to criticise anyone for not collecting the data, try:
Any Government since 1948 (when the NHS was founded).
The Blair Government for not requiring the PCTs to collect this data when they were created
The Office for National Statistics (who have been responsible for the NHS Register since 1952).
The NHS itself (particularly the senior management who ordered expensive computer systems that did not work).
All the Civil Servants who did not think that data on MS mattered.

Certainly not the DWP - whatever their faults, they are only responsible for claimants, not for the diagnosed

If you want to do somerthing about it, try a Freedom of Information Request to The DoH asking what information they hold on the incidence of MS and other neurological diseases - that would force them to admit that they did not know. Then you could pass the information (or lack of it) to the media.

Geoff

Both well thought out and valid replies. As for the PCT s not knowing who has MS if you give me the appointment lists for the neurology department for last year I’ll have some numbers for you and even though I cancelled my 20 minutes I’ll be there somewhere.When did the opinions of Civil Servants and good health care coincide?

As for not being reportable,ahem DVLA,but not everybody has a licence,but I’m sure a ‘statistical whizz’ could manufacture some approximate figures Again ,where did 80,000 come from in 1958? By going through the lists perhaps. If that figure was low then today’s figure is low. Again ,the MS support services are constantly underfire on here,'cos they are way underfunded and have been for years., and to my simple mind the total number is very important when funding was/is decided.There are two MS Nurses at Walton Neuro in Liverpool trying to do the work of five with a catchment area from Lancaster to Holyhead.

The total number has no impact on me because there is nothing else for me in this country and my GP knows the neuro is a ----- and effectively supplies drugs that Dr-------- ----------- would on a 20 minute annual basis. BUT the Newbies on here with virtually no help and support who are constantly looking for advice are a different group when blame for no support needs to be apportioned.

Wb

You seem to be getting confused between the legal requirement for those holding a drivers licence to report certain medical conditions to the DVLA, and the legal requirement to notify certain Local Authority Proper Officers of any instance of a whole list of infectious diseases. You can get more from the Health Protection Agency at:

On this topic, the new NHS Summary Care Record has the potential to collect a wide range of data (way beyond just MS), provided individuals do not exercise their right to opt out. Of course, extracting the data would almost certainly require a whole new Agency, staffed by a large number of bureaucrats. Guess if this is likely to happen …

Geoff