Thanks for alerting us to that Lynne, I will have a listen.
My letter to my MP gained nothing more than a pretty standard response from her secretary. I was surprised however to receive any response at all from the commissioning board! -;
18 September, 2012
Thank you for your comment, we appreciate you taking the time to get in touch. We understand your disappointment that the NHS Commissioning Board Authority (NHS CBA) is not proposing to establish a strategic clinical network for lung disease at this time. However, there is inevitably a limit to the resources available to support strategic clinical networks, and there are a number of conditions or patient groups who, taking into account the criteria published by the NHS CBA in The Way Forward: Strategic clinical networks, are able to make a valid case for a network to help drive improvements in outcomes for patients.
The NHS CBA has made it clear that, as priorities change or the work of one of the initial strategic clinical networks concludes, the Board will identify new conditions or patient groups that would benefit from a strategic clinical network approach.
The fact that the NHS CBA is not proposing to establish a strategic clinical network for lung disease at this time does not mean that the Board does not attach priority to improving outcomes for respiratory patients.
Of course I do not accept his explanation - if anything fits the "criteria published by NHS CBA" then we certainly do! The reference to more patient groups / conditions being considered at some future time does little to pacify as we well know that this first SCN agenda will run for up to five years, so little is likely to happen for us before then. Even if we are included second time around - if there is a second time - one can safely say it would be getting on for ten years before results of any improvements in terms of treatment outcomes, quality of life, mortality rates etc even begin to feed through.
I don't expect we will see any change of heart over this issue now - things have already started to steam ahead. The number one fight for now must be our own - the fight to stay alive and stay as fit and healthy as we each individually can. I recently read that for copd, one area of concern is high mortality rates in the under 75's. Perhaps I am being a tad optimistic, being already v.severe in my 50's, but I am all for having a go at helping by staying alive 'till 75! P