Monday, 29 April 2013

Postcode Lottery UK

Thousands of MSers are not getting drugs or the care and support they need, according to a campaign launched today by UK MS Society.




DOWNLOAD THE REPORT (CLICK)

The MS Society wants equal access for all to treatment

A survey of more than 10,000 people with the condition found there were postcode variations, with people in Northern Ireland twice as likely as those in Wales to be taking drug therapy.



Six out of 10 eligible people with MS are not receiving "disease-modifying treatments.

Of those who were well-informed, saying they had sufficient information on treatments, 59% were taking disease-modifying treatments, compared with 27% of those who felt they did not know enough about them.


TELL EVERY ONE ABOUT THE BLOG 


GET THEM INFORMED!!!

People who had access to a specialist MS neurologist or nurse were more likely to be on treatments.

            

    YOU NEED SOMEONE LIKE PROF G 

& THE TEAM

In Europe, only Poland and Romania have a lower prescription rate for MS drugs than the UK compared to 27 European Countries.

THIS IS WHY WE NEED THE BPA!


SIMPLE FACT IS THAT PHARMA ARE CHARGING TOO MUCH FOR THEIR DRUGS

These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck – like where they live or how helpful their healthcare professional is – rather than their genuine clinical need,



The report also found that half of those who are struggling to make ends meet and need social care support are unable to access it.

• A quarter of people with MS who are of working age are employed, compared to three quarters of the wider UK population.

• Only 25 per cent of unemployed people with MS who want support to find paid employment are able to get it.

• Access to support to find, and hold on to, paid employment varies considerably across the UK. People in Scotland and Wales, who feel they need it, receive notably less support.



Those with a carer are 11 per cent more likely to need additional social care but are four per cent less likely to receive it.


10 comments:

  1. This survey has been reported in the Guardian today. You can comment, should you so wish.
    http://www.guardian.co.uk/society/2013/apr/29/multiple-sclerosis-patients-uk-inadequate-care?commentpage=1

    ReplyDelete
  2. I met a lady (65+) on holiday recently who had had MS for 25+ years. She was using two sticks to walk but told me this was more her arthritis than the MS. It didn't LOOK progressive to me, her walking was normal speed more or less. Anyway, she told me that she saw the neuro every year and that (honestly) the only thing he had ever prescribed for her was codeine.

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  3. A friend of mine was in limboland for eight years: her neuro told her repeatedly that it was better not to get an MS dx because it would make it difficult to get insurance. She eventually changed teams, got dxd immediately.... but of course with eight years of treatment missed. What can we do about consultants like this? Are they somehow not accountable?

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  4. Hello
    The MS Society report does not make happy reading if you live in the UK and suffer from MS.

    The cost of care & drugs is rising faster than the amount of money being put in the NHS pot. MSers demand the drugs, this improves the quality of their lives BUT maybe the government thinks it is more cost effective to leave us on benefits rather than pay for the drugs? So lets get the Pharmas to reduce the cost of the drugs.

    Another argument is that the consultants do not have the knowledge of the treatments available for MSers, Surely this cannot be true?

    The whole issue of cost of drugs and cost of medical treatment vs money available has made me very cynical. I cannot see things changing very quickly so it is up to the poor patient to demand something from the consultant. Whatever, it leaves me feeling a bit disillusioned

    Regards,
    Patrick

    ReplyDelete
    Replies
    1. Cost is a central if not the issue.

      If a cheap drug (in my dreams) came along there would not be an issue. When the UK pie is not a big part of the slice of the action for the big pharma they don't care, we can huff and puff, but every now and again we need to kick their door in so they don't get too complacent.

      Don't get disillusioned, just get up an fight for another day. Learn to love jumping through hoops just as we do and look forward to the eventual day when someone's ar*e (thats a*s in American) will get kicked.

      But be cynical, it will keep you sane, other wise you will be dreaming of T regitopes :-)

      PS. If the consultants don't have the knowledge then their a*S needs to be kicked

      Delete
  5. The problem may be also the type of medicine that is offered to patients. Because of health system by default you'll get offered INF, which isn't very convenient and neither works well. You'll get 20 years old medicine that proven to not do big difference in disease course and MAY decrese number of relapses per year. When will be by default offered medicine that MAY stop the disease completely?

    ReplyDelete
    Replies
    1. When will you get medicines that may stop disease completely..I hope the choice will be soon.

      Dealing with regulators is like wading through porridge with dark glassess and earphones on

      Delete
    2. You made me laugh today :-) So what is "be soon" means? 2 years - 5 years? Soon is very relative especially when you have this disease.

      Delete
  6. There is another side to this whole argument. There are many MSers who are only very mildly disabled and are not interested in DMT's. I met one yesterday. Curiously enough it was at a funeral

    What everyone needs to know is the percentage of MSers who warrant receiving DMT but are not able to get it because of spending cuts and/or postcode lottery.

    I do try not to be too cynical but being a realist can get to be boring. One day ...

    ReplyDelete

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