1,000 signatures reached
To: National Institute for Health and Care Excellence
Say No to N.I.C.E 2014 Proposals for care of MS Patients
Please don't refuse MS patients NHS -funded access to Fampyra & Sativex.
Also, please don't set up a system in which MS patients may no longer have an entitlement to meetings/reviews with specialist MS Neurologists.
Also, please don't set up a system in which MS patients may no longer have an entitlement to meetings/reviews with specialist MS Neurologists.
Why is this important?
Firstly, MS is incurable and progressive. Drug treatment is already a postcode lottery across different NHS areas/hospitals. Drugs which keep us as active, mobile and employable are of huge benefit to patients and to society. Neurologists report very good results from Fampyra and Sativex.
Currently, patients with the help of the Neurologists are able to try Fampyra for 4 weeks, but are told thereafter that they must pay £2,500 approx if they wish to continue treatment.
Cost-effectiveness includes use of long term drug treatments to stem, as far as possible, the relapses and disease progression of this illness. To ask MS patients to pay for drugs which may enable them to move about more freely (and continue in employment if applicable) is to create a two-tier service for those with this illness.
Secondly, the prospect of MS patients not being able to access specialist MS Neurologists is outrageous. The proposals (1.4 - Regular Review) make clear that non-specialist professionals could carry out reviews with patients.
Consider a cancer patient being told to have reviews of their illness/progression/treatment plans with their GP rather than an Oncologist specialising in their particular kind of cancer. It doesn't bear thinking about, does it? Yet MS patients are facing that scenario if these proposals are enacted.
The brain is the most complex living organism known to Man and Womankind. Diseases of the brain are little enough understood, without the prospect of non-specialists being involved in reviews, treatment plans etc.
Say no to these draft proposals. The consultation period ends on 10 June 2014. Please support this campaign and those of us with MS, their loved ones, their Neurologists, their employers. We need your help.
Currently, patients with the help of the Neurologists are able to try Fampyra for 4 weeks, but are told thereafter that they must pay £2,500 approx if they wish to continue treatment.
Cost-effectiveness includes use of long term drug treatments to stem, as far as possible, the relapses and disease progression of this illness. To ask MS patients to pay for drugs which may enable them to move about more freely (and continue in employment if applicable) is to create a two-tier service for those with this illness.
Secondly, the prospect of MS patients not being able to access specialist MS Neurologists is outrageous. The proposals (1.4 - Regular Review) make clear that non-specialist professionals could carry out reviews with patients.
Consider a cancer patient being told to have reviews of their illness/progression/treatment plans with their GP rather than an Oncologist specialising in their particular kind of cancer. It doesn't bear thinking about, does it? Yet MS patients are facing that scenario if these proposals are enacted.
The brain is the most complex living organism known to Man and Womankind. Diseases of the brain are little enough understood, without the prospect of non-specialists being involved in reviews, treatment plans etc.
Say no to these draft proposals. The consultation period ends on 10 June 2014. Please support this campaign and those of us with MS, their loved ones, their Neurologists, their employers. We need your help.
