Scottish Persons with MS / CCSVI health system input

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Scottish Persons with MS / CCSVI health system input

Postby Brightspot » Sat May 21, 2011 4:09 pm

Have done some catch up reading on this site and see that NICE is not just Scottish, but NHS wide.

Rather than delete my post will just add the links to the threads already providing information.

(Great work Mark et al . Hope there is positive result!)

I was doing some research for public input into health care reform in Canada, and came across this.

Looks like a possible chance to address the need for / effectiveness of angioplasty for CCSVI treatment in Scotland.

I wonder if anyone who has had angioplasty has addressed CCSVI treatment with them.

Here is something that I cut and pasted from the site.

You are in: Home > Voices Scotland > Opportunities To Get Involved > National Institute for Health and Clinical Excellence
National Institute for Health and Clinical Excellence (NICE)

Although the National Institute for Health and Clinical Excellence (NICE) has a wider remit in England and Wales, NICE's role covers Scotland in one programme.

This is the production of guidance on the future use of specific interventional procedures in the NHS. An interventional procedure is one that is used for diagnosing an illness or treating a patient by something entering the body, such as surgery, an exploratory camera or a laser.

Public role
NICE values evidence from patients—we want to hear personal experience about having an interventional procedure and its impact. Sometimes patients and carers can tell us about things that are important but that do not show up in formal research.

One of the main ways patients and carers can get involved is to take part in consultations. NICE’s decision-making committee produces a consultation document for each procedure which sets out provisional recommendations on its future use in the NHS.

NICE is interested to hear what patients, carers and patient organisations think about its draft recommendations.

To ensure that interventional procedures guidance reflects issues that matter to patients and carers.

Patients and carers take part in any twenty-day consultation which they feel is relevant to them by sending their comments electronically or by post.

Experience of the particular interventional procedure—as a patient or carer—or ability to comment on it as someone who has the condition it is being used to treat.

The Project Manager in the Patient and Public Involvement Programme can offer support needed.

be up to date with research in relevant condition
use experiences to ensure that only safe procedures that work are offered to other patients in the future
Notifying a procedure to NICE
Procedures accepted by the Interventional Procedures Programme are sometimes notified by patients. They are usually procedures that are new or relatively new to the NHS. They may have only been used in a few specialist centres or have been used with a relatively small number of patients. Some procedures considered by NICE are ones that have been in use in the NHS, but where concerns have been raised about their safety and/ or how well they work.

Please ask if you would like further details on how to notify a procedure.

Joanna Pearl, Project Manager

Interventional Procedures, Patient & Public Involvement Programme

National Institute for Health and Clinical Excellence

MidCity Place
71 High Holborn
London WC1V 6NA
Direct dial: 020 7067 4767
Main tel: 020 7067 5800
Fax: 020 7067 5801

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