RSV, have you heard of it? If you answered yes I am guessing your either a health professional, a parent of a premature or sick baby or an adult with a long term health condition. Until last year I had never heard of RSV.
It stands for respiratory syncytial virus, and has symptoms not dissimlar from the common cold. Like the common cold it is, well, common, and raises its ugly little head from November to March each year. RSV can cause bronchiolitis, which for small babies and children, and those with suppressed immune symptoms, can be devastating. It can cause the baby to be readmitted, and in serious cases, bronchiolitis can be fatal.
When Joseph was in hospital, we were told he had Chronic Lung Disease. I was devastated, a disease? It took me a while to get my head around the fact that CLD is not a disease as such (although it can be) its a definition used by healthcare professionals. Joseph had been on oxygen for longer than one month, so was deemed to have CLD.
Now in the UK if a baby has been diagnosed with CLD they may be eligible to have a monthly injection over winter called Synagis (Palivizumab). This injection, from what I understand, does not prevent RSV, but lessens its severity and course, and can prevent readmissions.
Of course, there is a catch. It's expensive. Around £700. Per dose. And the injections happened once a month for 6 months. That, my friends, is a lot of money, and given that the rate of premature babies does not go down each year, it goes up, its a cost the NHS is going to have to learn how to deal with.
Now at the eleventh hour, it was decided Joseph did not have CLD, or not to such an extent as to warrant the RSV injections. At the time I was very upset, and was so stressed out by everything that had happened, I didn't appeal. I really should have done, but at the time, it just didn't enter my head to.
And as it happened, Joseph had a perfect winter. A couple of minor colds, but nothing serious. So, annoyingly, this justifies the PCT's decision not to fund this injection.
As I've got more active in the premature baby community I can see a major disparity between various PCTs throughout the country, and it makes my blood boil. How can it be so different in North Manchester compared to say North London?
The other thing that annoys me, is that private health care in this country is so restrictive. We are members of a private health care scheme but it doesn't cover outpatient drugs or preventative treatment, so they wouldn't cover the shots either.
And I'm not sure what the answer is, because not only did the NHS save £4200 not giving us the medication, it didn't pay out for any inpatient stays for Joseph either. What is a big shame is that we were enrolled in an efficacy study for the RSV jabs, but because the funding was pulled, we were no longer in the study. I think it would have been interesting to keep us in and to compare how Joseph did compared to other 27 weekers who did receive the Synagis.
So as we approach winter again, my thoughts are with all of you who have small babies, and children with suppressed immune systems, and I hope you all have a kind winter.