Hello,

I have just joined this group.

I wonder if I could ask for some advice?

I am a 39 year old UK male with Kartageners Syndrome,
which includes amongst many other things chronic asthma
and bronchiectasis. I have regular chest infections.

I am also a wheelchair user due to chronic arthritis.

Until recently I was having my chest tapped during my
twice daily postural drainage sessions by my mother
who has since died.

I have been referred by my doctor to the physiotherapy
clinic at my local NHS hospital.

The clinic were prepared to teach a personal care assistant
how to tap my chest during postural drainage.

However, none of the care agencies are prepared to do this
due to insurance considerations.

I was then referred back to the physio clinic, where I was then
told that tapping (patting) during postural drainage was no longer
done as it was not considered effective. They then proceeded to tell
me about breathing exercises which I have already been doing since childhood.

I am becoming rather worried as I have already had more chest infections than usual.

What I would like to know is it true that tapping of the chest, side
and back is now considered unnecessary, or are the physio department
trying to buck their duty of care?


Many thanks in advance for your replies

Mark

Yes, it's still done. DS was diagnosed at birth with Cystic Fibrosis and they trained us in how to do this for him along with nebulizer treatments treatments. It's our understanding that when he's big enough, he'll be able to get a vest, which will do the treatments for us. We're anxious to get a vest to free up some of our time -- currently we do three CPT treatments a day; however, our doctor indicated we should wait a couple more years until DS is 4 because he feels manual CPT is better than the vest.

The vest is very costly -- about $16,000 U.S. and our insurance will only cover 80%. I know other people us something called the flutter which is a breathing device. Others use a percusser -- a vibrating massager.

Hi,

Thanks for you reply. I am going to see my doctor today to insist that the physiotherapy team do their job, or to supply me with a vibrating vest. I also looked on the UK cystic fibrosis website and they confirmed what you said and I suspected, that tapping during postural drainage is of benefit.

Another person emailed me to say that it may be worth contacting the PCD clinic at the Royal Brompton Hospital in London to get their weight behind me, as it is their consultants opinion that tapping is of benefit.

I suspect the problem with my local physio team is one that is common in the NHS here in the UK, that of being under resourced and under manned.

When DS was diagnosed we were taught by the Respiratory Therapy Team at the Children's Hospital. They showed us how to do the chest physiotherapy, then supervised as we did it. They also had a nice hand out with graphics that showed us all the positions. Do you have a friend or family member who could learn how to do this rather than have someone come into your home and do this, if you aren't able to get a vest?

Hi,

Unfortunately, my brother who is my closest relative (geographically) lives some 80 miles away in Croydon, South London, and so cannot make the journey every day. I have an Aunt and Uncle who live in North Wales (250 miles away), and the rest live in Australia. It is not practical to get friends to do this as they either have children and work, or are physically disabled, and unable to perform patting.

My GP has had numerous discussions with the physio department and my Care Manager in order to try and sort out this mess. I am currently waiting for my Care Manager to get back to me in order to explain why none of the care agencies are unable to perform this task, when they are able to perform tasks such as injections and catheterisations, both of which are more risky tasks than the patting of a chest.

I am being referred back to my chest clinic in the hope that my Consultant can exert more pressure on this matter.

As my GP said to my Care Manager "We are all going to pretty stupid when he
has to be admitted into hospital".

Again, many thanks for your reply.

Mark

Hi Mark,
i too am new to this forum. To answer your question, yes physiotherapists do still use and teach percussion but there are other methods of assisting chest clearance which promote more independence and are therefore often more appropriate when someone is *well* with their chronic lung condition.

It may be worth you discussing with your doctor a referral to assess what would be most appropriate.
Also for what it is worth physiotherapists are autonomous practitioners, meaning they do not HAVE to do anything just because the doctor / consultant said so, if the physiotherapist, in their professional opinion did not feel it appropraite.

Some links to other chest clearance devices:

http://www.clement-clarke.com/respiratory/Therapeutic/Flutter-Mucus.htm

http://www.devicelink.com/expo/awards02/genesis.html

http://www.astratechuk.com/Main.aspx/Item/202645/navt/116/navl/46321/nava/46326

Hope you find a workable solution

Hi Seren,

Thanks for your post, sorry for the late reply.

I have tried the Flutter in the past, but found to be of little use. The problem is that since I have no useful cillia, the mucus at the bottom of the lung cannot be removed in the normal way, and I found that the Flutter was able to help me remove mucus from the top of the lung, but the vibrations were not strong enough to dislodge any mucus from the base of the lung, even when doing postural drainage.

Whilst I was using it I found that my lung function actually decreased and I had more incidents of chest infections.

I find that the best way of removing mucus from the base of the lung is to have cupped hand percussion during postural drainage, but unfortunately, I am having to wait until my referral to the chest clinic, which is on he 18th October, before I can finally get the ball rolling again.

Regards

Mark