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572651 tn?1531002957

UK Among Lowest DMD users in the World

From Medical News Today, this should come as no surprise to any of us who follow the hijinks of the NHS.....

http://www.medicalnewstoday.com/articles/196696.php

Report Shows Prescribing Levels For MS Drugs In The UK Among The Lowest In The World
Main Category: Multiple Sclerosis
Article Date: 04 Aug 2010 - 1:00 PDT





As a report names the UK as one of the worst developed countries in the world in terms of access to MS drugs, the MS Society is calling for an urgent update of the clinical guidelines for MS.

The Department of Health published a report this week that showed that the UK ranked 13 out of 14 developed countries for use of MS drugs. Shockingly, the UK usage of MS drugs falls more than 50% below the average for all other countries included in the report.

Laura Weir, Head of Policy and Campaigns at the MS Society, stated:
"These statistics are very disappointing. Although drugs that help in the fight against MS are improving, access to specialist neurology services across the country is patchy and the NICE clinical guideline for MS is hopelessly out of date. This means that the latest drugs, like Sativex and Tysabri, aren't contained in the guidelines which outline the best practice treatment for the condition.

This report shows the urgent need for an update of the guideline and the development of a NICE quality standard for MS to ensure that the 100,000 people with MS in the UK have access to the best and most up-to-date treatment for their condition. No-one should have to fight to access the drugs they need."

The MS Society is working locally and nationally to improve access to treatments. In light of the recent licensing of the symptom relief drug Sativex, we've produced a step-by-step guide on action you can take to try to access the drug. We will continue to fight for an update of the NICE clinical guideline for MS.

To find out more about the MS Society's work on access to treatment or read the Sativex guide, visit the Policy and Campaigns web pages.

11 Responses
Avatar universal
Oh boy.....at the risk of sounding political (as usual with me!) and cynical, is this report sponsered by a drug company?? LOL sorry...I'm very cynical..........

I'd be interested to hear from any UK members in here if the above experience is correct, or an anti-universal, pro-drug company spin........(yeah I'm a leftie hippy type :P)

572651 tn?1531002957
I believe the report was compiled by the UK government.....

I'm always the cynical one around here, expecting the drug companies to be behind everything related to our treatments.  

We regularly hear the UK folks having trouble getting a dx, and often being told they have benign MS and don't qualify for a DMD.
382218 tn?1341185087
It doesn't sound like something that would be sponsored by a drug company....the article cited the Dept of Health as publisher of the report.  It would be interesting to read the actual report to find out the methodology used, ie:  how did they come up with the numbers for how many patients without prescription for DMD; what would be a reliable source for this data?  Also, what are the 13 other countries included in the study, how did they compare against each other and what explains the higher prescribing rates in other countries, etc etc?  I'm not necessarily doubting the conclusions, just curious about how the study was undertaken.

Question for those in the UK: are DMD's only available when funded by NHS, or can they be covered by private insurance (private non-group plan, or group plan such as an an employer plan)?
Avatar universal
I'd love to know the other countries as well. I know I have had plenty of drugs prescribed for me in the past and never bothered filling the prescription.

I also know my MS nurse said many of her 'girls' choose not to take any medication. I wonder if that sort of thing counts as in the negative figures?

Interesting stuff.......
1253197 tn?1331212710
I think that the drugs are only available on the NHS. Our medical insurance works very differently to USA as far as I can work out. If you have medical insurance you can access quick private consultations, operations etc but they do not pay for long term treatment for chronic conditions.

I saw my first neuro privately and was able to have MRI and MS investigations done quickly which led to my dx within about 6 weeks from start to finish. VERY FAST compared to many people left in limboland...but all my tests and scans clearly pointed to MS. My neuro then advised me to transfer care to the NHS to enable me access DMD's if I wanted them.

In fact as many of you know I am still trying to get onto the oral drug trial (commencing screening in October) as an alternative to DMD's. If it does not happen this time then I will have to start the screening for funding for DMD's under the NHS.

Hope that gives a little insight but I am sure others in UK have different experiences.

Love Sarah x
Avatar universal
I think Sarah has pretty much covered it.

Re the NHS, I know that I have praised the fact that we don't have to pay for drugs but there are oh so many faults with it.

I was diagnosed in 1994, after I was diagnosed I didn't see a neuro again for 14 years - and that was only after I pushed so that I could find out about DMDs. I basically had to start again at the bottom of the waiting list.

Someone I know has PPMS, she recently heard about the new drug - Sativex I think - that helps spaciticity and went to her GP to ask about it. He told her that only a neuro can prescribe it, which is understandeable, she adked him to make her an appointment with her neuro - his answer was that SHE DIDN'T HAVE A NEURO ANY LONGER AS SHE HADN'T SEEN HIM FOR 5 YEARS. This is shocking.

For goodness sake she is in a wheelchair, why haven't they seen her for 5 years?! She has had to go back on the waiting list and has been told it will be months  till she gets an appointment, then she won't necessarily see the same neuro that she saw before.

I started my DMD in 2008, I see the neuro or the MS nurse for follow up every 6 months, but since the MRI I had in 1994 I have never had another one. As to whether the DMD is working they just ask me how I am doing.

Oh yes our wonderful NHS.

Mand
Avatar universal
Sounds like we have it good Down Under then.....the longest I had to wait for a public neuro was about 3 weeks.....ours is a mix of private and public, I think we took the best of the NHS and the best of the yank system and came up with our own. It's far from perfect of course, and I'm sure plenty have grim experiences, but frankly I've been very happy with all my care and my family's care over the years, for everything from childbirth to smashed legs, burst appendix to gallbladders, croup to MS. I think I do simlar to SparkeySarah though, mixing up the public system with a spot of private care for faster results without breaking the bank...
Avatar universal
Maybe this will help the UK health system get their b**ts in gear and dx a few of these people who so clearly have MS, but aren't being treated...  :)  

Stephanie
(From across the pond)
1312898 tn?1314571733
I just looked up the drug Sativex that Sarah mentioned for her friend with PPMS.

Sativex contains cannibinoids and is derived from the acutal marijuana plant.  It differs from the synthetic drugs liky Marinol (than on one prescribes).  The levels of THC is what makes the drug work so well.

In some countries it is marketed only as a drug for MS.  A few other countries also use it for cancer.

The US is now is phase III trials for Cancer pain.  I can't tell if it will be used for MS.

I hope it will be approved and avail. for more than cancer.  This is an area where our process is slower.  I wonder if it will fail because it has too much THC in it.

I live in Michigan, could I drive to MI to get the drug and come back home ;-)

Red

572651 tn?1531002957
Red - Sativex has been in use as a legal Rx in Canada for about 5 years.  It is prescribed for MS patients. Unfortunately it is still illegal to bring it across the border. The UK adding it to their mix of weapons is good news.  hopefully the US will move off its stance against marijuana and make this drug available to people who suffer with this disease.

I know all of our systems have strong and weak points.  I just found it interesting that the UK government acknowledged that they don't use the DMD's as freely as is done in other countries.  I think this report ties into the recent news from the NHS and the UK MS society that they believe DMD's are not a cost efficient method of treating MS.  

-Lu
1312898 tn?1314571733
As far as the DMD's I figured it was about the expense of these important medications.  Perhaps in time they will become less expensive.  I don't know if that is possible though with the complexity of the manufacture of the drug.  It just costs too much so they don't prescribe it.  

As far as the Sativex, like you said Lu,  this will eventually become a 'thorn in the side' of our drug companies and/or the DEA.  

Red
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