Jooly's Joint: people with MS supporting each other

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Beta Interferon campaign issues

Jooly: not worth treating?

Pictured: Jooly's Joint members wore gags at a protest outside the Dept of Health in London in July 2000. The gags represent NICE's refusal to listen to people with MS.

Give people with MS the drugs we need

People with MS in England and Wales may be denied access to MS drugs such as beta interferon and glatiramer acetate, because the National Institute for Clinical Excellent (NICE), a Government health standards body, believes that the benefits of the drugs are outweighed by their 'great cost'.

We do not agree. Hundreds and hundreds of members of Jooly's Joint all over the world use these drugs, and report enormous improvements in their health. There is no cure for MS, but it is evident that these drugs slow the progress of the disease and give us a degree of stability.

Don't ban the drugs we need Hear our protest

Members of JJ protest outside the Dept of Health

Ode to Mr Blair

by Jooly's Joint member Miriam Lardner

Mr Blair, this poem I have written for you
To see if there is something please you can do
It's on behalf of my mum and MS sufferers in the UK
Because it's time they were noticed and had their say
It's terrible to see someone you love suffer so
And to know there's a treatment to which they're told "No"
Interferon has been shown to help to improve
But if you don't live in the right area, you'll just have to move!
Only a few people have this treatment on the NHS
For the rest of the people, their lives are a mess
The treatment will cost you thousands a year
We're trying to fund raise but this sum fills us with fear
My mother's not eligible for treatment - too old they say
She's the same age Cherie will be when Leo's 10 and at play!
It's so cruel for sufferers to know there's a treatment to try
And to know they'll never try it is enough to make them cry
Can't the National Lottery help or a separate one take place every week
To help this situation which is clearly bleak
It would be so popular and would give you the cash
It would help many other causes too - so give it a bash
So I hope you take note of my ode Mr Blair
Please do something now and show the country you care

Minister's reminder to health authorities

Health Minister John Denham has reminded chief executives of health authorities that they should be following existing NHS guidance on MS drugs pending publication of guidance from the National Institute for Clinical Excellence. Patient groups had told the Minister that many people with MS are becoming too disabled to meet the prescribing criteria for beta interferons and glatiramer acetate and urged him to take action to make health authorities implement 1995 NHS guidelines "to initiate and continue prescribing of beta interferon through hospitals."

MS Society Chief Executive Peter Cardy said, 'After five years, the Government is recognising the suffering of many people who are being denied the only treatments which can reduce the misery of MS attacks and slow its progress. We shall now see how effective they are in persuading authorities holding back on funding to give people whose neurologists believe will benefit the drugs they desperately need." Related Department of Health bulletin (scroll down to point 6).

Levels of care for people with MS

  • In the UK there are only 6 neurologists per million of the population. The USA has 40, Italy 71 and Demark 100 per million.
  • There are only 80 MS nurses in the UK, serving the needs of 85,000 people with MS.
  • Only 16% of people with MS feel they received adequate support from the health service at the time of their diagnosis and even less have had a proper opportunity to discuss how MS might affect them.
  • Less than 4 out of 10 people with MS say they have been given enough information about whether to accept the treatment or care offered to them.
  • Less than 3 in 10 people with MS have received advice on managing day-to-day activities to reduce the impact of symptoms.
  • Only 4 in 10 people with MS have found it easy to access physiotherapy and fewer still to get to see a neurologist.
  • Only 4% of people with MS have been asked how services could be improved.
    (source: MS Society of Great Britain and Northern Ireland)

Smiling sun Think positively - we can still do something about this

Can the 120,000 UK taxpayers who signed our petition and 90% of neurologists really be wrong about the benefits of beta interferon for people with MS? The Government is out of step with both public and professional opinion on this issue.

Despite the Government's attempts to deny people with MS our human and civil right to rewarding lives, we will not give up on ourselves, and we will not cease demonstrating that people with MS have something to contribute.

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