My consultant said 'if they licensed it for you nobody would pay for it'. This is discrimination as those with cystic fibrosis bronchiectasis get it in shed loads. In the US it is having a dramatic improvement for those with non cystic fibrosis bronchiectasis. I have struggled with bronchiectasis for 60 years. I have lived a healthy lifestyle, exercised, done my physio every day and still fight massive amounts of sputum. I am tired and very angry. Other patients seem not to know that we are discriminated against in this way and consultants are afraid to address the problem.
I would like to know why non cystic f... - Lung Conditions C...
I would like to know why non cystic fibrosis bronchiectasis patients in the UK are denied TOBI
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28 Replies
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hi fibberti, thanks for your response. I am currently nebulising colomycin which is helping. I had to demand it though after they nearly killed me with tobramycin which glued my lungs together. I am with the QE in Bham who were very good when there was a consultant from the 1980s who was researching bronchiectasis. Since he stopped clinical work I feel that we are definitely the poor relations. We do not even have the use of the research lab to find the bugs in our lungs and the hospital labs cannot do the tests which we need. I would like to know why we are all told different stories. I am told that there is no funding for TOBI and that it is not licensed. you are told the opposite. there is no consistency in our care and I think that it is time that we started kicking up a fuss. not all of us have access to The Brompton. I took part in the trial for nebulised cipro and it worked very well. Every time I see my consultant I ask when it will be available for us she just laughs and shakes her head.
Good question Stitch, I have read a lot about pseudomonas and often wondered if I have had that...is it a sputum test that tells them?
I didn't initially know I had pseudo until my temperature shot up to 39c and I was practically unconscious. They admitted me to hospital and put me straight on Tacin(?) and took a sputum test. That proved pseudo was present and I was kept in for 14 days on IVs. 3 months on colimycin inhalation, but I had to stop the cipro as it gave me tendonitis after one week!!! They did warn me of that.
I can feel my blood boiling - don't get me started on this one. I have had quite a few discussions with my consultants regarding this very subject and although I believe they are as unhappy as we are with the situation it is all down to funding. It is the inequalities in funding for non cf bronchiectasis compared to that of cf or indeed that of copd, which ultimately makes us the orphans of the respiratory world. One consultant was particularly cross that patients with PCD, which as you know is genetic also, do not get funded properly, but then many of us have had non cf bronch since babyhood or childhood.
Obviously CF effects children and their life expectancy, although as you know their life expectancy is increasing as time goes on, I am pleased to say. Therefore there have been a lot of people, quite rightly, fighting their corner. I have a letter from my consultant stating exactly where the funding comes from for cf but haven't got it ready to hand. If I remember rightly funding is not only national but they also get lots of private funding. There is also funding for copd. The pul rehab programme for example - we can go if we ask but it isn't actually for us. There are lots of specialist nurses for cf and copd and matrons, yet in comparison there are 3 or 4 specialist non cf bronchiectasis nurses in the whole of the UK.
I think it is important to emphasise that in no way do we want the funding for cystic fibrosis patients to be diluted – that is not a solution – but that we should have and need funding in our own right. By the way our funding is simply as and when. Funding is found if you go into hospital or are seen in out patients - that's it.
I think it needs pointing out to the financial decision makers that although patients with cf have other problems, in lung terms it is the same and some non cf bronchiectatics can be as ill as some patients with cf. Bronchiectatics are denied certain treatments that would be of huge benefit to them as they are only licensed for CF patients, although this can be a postcode lottery. We also have to put in the same amount of physio etc to manage our condition and physiotherapy is a huge key to managing this illness. Presently at the hospitaI I attend only non cf bronchiectatics under the care of a cf consultant can, if comfortable with it, spend a very short time in hospital and continue to do home IVs. Patients under the care of other respiratory consultants have to stay 14 days. At present this is diluting the cf service as it is the cf nurses who have to teach administering IVs. Surely it would not cost the earth in the scheme of things to hire two bronchiectasis specialist nurses. This must surely be cost effective, considering it costs £300 per day to keep a patient in hospital.
Visits from physiotherapists whilst an inpatient is very minimal compared to how it used to be, even when you are really too ill to do it yourself. I find it very isolating having bronchiectasis. You only see a specialist nurse (cf) if the plan is to do your own IVs and you are surrounded by patients being visited by their specialist nurses and matrons from the community and we are simply left to get on with it. It is really unacceptable.
It is also unacceptable for bronchiectatics to be moved constantly from ward to ward with regard to cross infection. We are just as vulnerable as CF patients, but again we really are very much the orphans in the respiratory world.
I did say don't get me started hun!!!!!! Really sorry SS I seem to have broadened out your original post.
I am not quite sure what we can do but I think it's time our voices were heard and we have to do something.
love cx
• in reply tocofdrop-UK
well said cofdrop. Please read my long reply to flibberti. The situation is a disgraceful anomaly and we really have to stir our very exhausted selves to create a massive stir about it. Please look at the NICE paper on evidence of off label use of antibiotics in non cf bronchiectasis which is due in January.
cofdrop-UK• in reply to
Absolutely agree Stillstanding. Your story sounds very familiar to me having been dx as a baby at the start of the NHS in 1948 not by a very well respected paediatrician of his time.
I am stunned you can no longer use the research lab. Is it only allowed for cf? If they miss some horrid bug which takes longer to cook, not only will it be problematic for you but I would have thought it would be false economy too. Maybe you could write 'cf protocol' on your usual MC&S form, although I expect you probably do that anyway.
Now you have got me interested - I would love to know who the smug 'pull the ladder up Jack' bronchiectatic is - pm please.I read an article some while ago now about a presenter of Woman's Hour who had bronchiectasis and talked about having to do physio etc. Not sure if she is still alive. Will have a look on the web and see if I can find her.
I think your idea of approaching Dr. Chris is very interesting indeed. Perhaps we should also approach BLF as they should be the best organisation to represent us and have access to the media, experts in the medical field and we also need representation to Government.
Letters to MPs would be good - it would be necessary for us to all be singing from the same hymn sheet - so anyone interested in becoming involved would need to be in contact with one another. The problem of course with us is we can be in fighting mode one minute and the next too poorly to be arsed and become resigned again.
Keep well as you can.
love cx
A rember one of tory pledges was people would not be denied vital meds regardless of cost.
Think its one of first thay broke .. as far as Bronchiectasis is defined as persistent or recurrent bronchial sepsis which was quite a shock to me as sepsis is a very serious deadly condion that kills more in uk than those with cancer
And what do medical profesion know about bronchial sepsis nothing ... well apart from high mortalaty rate
Perhaps BLF could start a campain as 37,000 a year is quite a lot of deaths thay know little about.
Cheers all the best 
• in reply to
I visited the BLF facebook page daz, and complained about how there is hardly any info or advice about bronchiectasis compared to copd and asthma. The told me they were trying to raise awareness ??? In all the literature they produce, there is one, single, flimsy leaflet about bronchy.
We had one nurse at our surgery (she's left now) who diagnosed me with copd, even though she knew I had bronchiectasis. She even commented herself that my smoking history is so minimal that I could be classed as never having smoked!! So why tell me I have COPD. My consultant laughed at the idea.
When I told the nurse in the school where I used to work that I had Bronchiectasis, she just shrugged her shoulders and said "Hmph, bronchitis" ! Says it all really, doesn't it.
Take care, Kath xx
• in reply to
hi poems galore.
Oh boy every time somebody replies I hear my life story. BLF have been 'raising awareness' since the 1980s and what have they done ? zilch! They know that we are discriminated against compared to other lung diseases when it comes to proper funding for treatment and yet, like the medical profession they sit on their hands and just hope that we don't have the energy to make a fuss. If I had a penny for every time a doctor who didn't know me told me that I was 'thinking too much about myself' or 'oh yes, bronchitis', I would be a millionaire. Worse, when I was in my twenties my mother had to put me in the car and take me to my childhood doctor because the GP I had at the time refused to give me antibiotics on the grounds that there was no such thing as bronchiectasis!
I have tried writing to MPs, Health Ministers, Heads of Health Trusts, spoken to Michaeli Paduana at the BBC and Ed Doolan, a presenter who has bronchiectasis and another famous female psychologist who wrote about her bronchiectasis in SAGA magazine. They all simply want to fob me off when it comes to asking probing questions about the lamentable state of our funding and treatment. There seems to be a deep embarrassment connected with fighting for us or criticising the holy medical fraternity. Heaven forfend that anyone should point the finger at NICE!
Ex smokers(COPD) with high profile campaigners like Liz Dawn get action. I am so pleased at the response to my simple question-Why are we discriminated against?
Now is the time to get together and make a big noise. Any ideas?
cofdrop-UK• in reply to
You have been very proactive S on behalf of bronchiectatics. Sad the responses were so piss poor.
Re BLF - if you were a newbie would you know what category to look under for info on brochiectasis - me neither - apparently it's 'Different Lungs' - doesn't that just speak volumes!
cx
• in reply to
Hi poemsgalore , am afraid thay no more than the letting on well as far as CF and bronchitiasis.
CF pataints get good stuff as thay could be colonised by Bacillus anthracis spores yet none cf bronchitiasis suffers can not.
Looks like when i asked BLF team about whats score with anthracis i was wright or is it right.
Is quite a lot on subject in goverment blue book on bactrial warfare.
But don't tell anyone its a secret
It is absolutely 'do it yourself' flib and I was horrified and upset for you going through all you have recently with your IVs and side effects with absolutely nobody to liaise with. You really shouldn't have to rely on relatives but so glad you had them at a time when you were too poorly to fight your corner. Makes me sick too - it's a disgrace. love cx
Thanks for the links. I shall be looking for the NICE paper in the new year.
The guidelines were oddly comforting as I read through it all. There was nothing that I did not know and it was amazing how many of the medics I have had contact with and the drugs that I have had, orally, nebulised or IV. I must say in my consultant's favour that her specialisation is bronchiectasis with the colonisation and treatment of pseudomonas being uppermost. She is the only one in her area who runs a specialised bronchiectasis clinic. She is up against national policy-or the lack of it and the fact that we are no longer allowed to have our sputum tested in the research lab where the staff have known me for 30 years, because of fear of cross contamination. The normal QE labs cannot go to the fine degrees of bug counting and sensitivity that the research lab can. They are trying to get the research lab approved for us but beaurocracy is putting up the barriers. Very frustrating for staff and patients alike.
Strangely, it was an eccentric Scottish doctor practising at Groby Road hospital in Leicester who saved my life in 1956. Dr Mackenzie. Otherwise I would have been one of the children with bronchiectasis who just died as did the CFs. My mother had been told that there was no hope for me when she was sent by a friend to see a doctor who had successfully eradicated TB in England (what a joke that seems now) and had turned his attention to bronchiectasis because it was simply ignored by most doctors. He put me on penicillin inhaled with oxygen which my mother had to drag home from the chemist in huge tanks every week. I did this for six years. Also I had oral antibiotics only available to the military up to that point. My GP got into terrible trouble because of the cost but stood up to the local panel and continued to prescribe. I also went to Leicester for serious physiotherapy to expand my lungs and teach me to breathe properly. I had to practice this at home daily for many years. Also I had to learn to get the sputum out of my lungs by myself. I was marched up hills and thrown into swimming pools, no matter how breathless I was. How I hated the asthma kids who got out of it all. Although my lungs are extensively damaged my FEV has hardly changed in 23 years and is excellent compared to many with much less damage. I don't know if you saw my post to happyfeet but COPD has been given massive funding because it is deemed to be more widespread than bronchiectasis. This is based upon 1970s research which identified massive numbers with emphysemia (smokers) and very few with bronchiectasis (lack of or mis diagnosis and frequently non smokers). It is time that this was addressed. We need a famous or loud voice. I have had contact with one personality who was simply smug because she attends the Brompton and there is a Bham local radio presenter whose bronchiectasis is not really controlled and he does not realise it. he attends a different hospital to me. maybe Dr Chris on Good Morning may be interested.
I have just been diagnosed with pseudomonas, been on nebulized colomycin for two years, had no feed back from
doctor, just prescribed ciprofloxacin for pseudo after sputum came back positive. I am now taking 15+ Manuka Honey everyday, I read it is one of the natural things which can fight pseudo. Have tried it before and it helped.
Had Bronchiectasis since I was two years old after left lung collapsed because of Vaccination of Tetanus, Whooping Cough and Diptheria. Caught Whooping Cough, was isolated with Diptheria. Had my op in 1948 one of the first to be treated at the first hospital to be on the National Health in Manchester (Park Hospital as was) . Surgeons came up from London to do the op. Very lucky. Still going strong, worked all my life, had three gorgeous children. Lungs now working at 37%. I have done Hatha ,Yoga and it has been a great help all my life especially with the panic of not being able to breath. Keep going everyone, merry xmas.
Well, how interesting! My mother told me years ago that she blamed a vaccination I had at around 2yrs old (1953). Before the vaccine I was fine, after..... the rest is history. Everytime any GP/consultant asks how it began I tell this story and all I get is silence or 'unlikely'. I think back in the day vaccines were 'live' and so could have caused side effects, but no-one is willing to pick up this 'hot potato'.
I wonder how many more of us 'vaccine - ers' there are out there.
• in reply tohappyfeet59
My hunch is that we are right. There seems to be a number of us around our age with no explanation such as whooping cough for the damage. I did some research on the internet about this early vaccine and kept drawing a blank because there is a denial that side effects were noticed or researched. I know that the first polio vaccine caused damage (I also had that) because it was recorded. They then went on to use a dead virus. The more one digs the smellier things one finds!
I know of one other person in my town who had the same reaction at the same time, only know of him because our families knew each other, still speak with his sister.
be interesting if someone does some research on this x
very intresting posts here.I have a massive hole in my leg from diptheria jab plus had a horrendous cough as a small child for years and now dodgy lungs.
I suspect that you we're put on to colomycin because of pseudomonas because it is one of the front line drugs against it. Nobody bothered to tell you. Because we are all different it doesn't seem to clear it up totally. I have cipro to take or co-amoxyclav if I need a boost. I am very interested in your diphtheria jab theory. I had my first pneumonia after I had my first vaccine in 1951. I have also read of someone else who thinks this. The vaccine was very new when we were small and because no studies were done on adverse effects docs today treat our suspicions as very subjective and unreliable. My mother refused to let them chop my lungs about which turned out to be right because of the scattered nature of the damage. I have extensive but an FEV of 66%. So it has been a lifetime of exercise, drainage, world travel, 2 children and 5 grandchildren. I am happy that you have achieved the same full life. We lifelong bronchiectatics are a good study in persistence,stoicism,stubbornness and I suspect, sheer bloodymindedness. Have a lovely Christmas.
cofdrop-UK• in reply to
Your not wrong there hun. Although my bronch is and was scattered in both lungs I did have a lobectomy section when I was 15. I don't think for one minute they would do the same nowadays. I can't honestly say what I would have been like had it not been done. cx
Hi Stillstanding
What is TOBI? I have Bronchiectasis and wonder if I am missing out on some vital medication.
I have to say that I found all the replies to your post very interesting.
Stay well
Tamara
I was never offered tobramycin. I must be three years on nebulised Colomycin. I don't think it does any good, as I still get infections from time to time. If I get a bad one, I take Ciproxin tabs and if at deaths door, I get IV Meropenam usually for a three week stay in hospital.
I have to say that I sometimes get annoyed with all the attention that smokers with COPD get. I never held a cigarette in my life and my lungs are shot to pieces. They say I got mine from measles at age 10.
Lately I have got tired of taking pills and the nebuliser. As probably like most of you, I have to nebulise first thing in the morning before I even have a cup of tea! I sometimes ask myself is it worth it all. People don't realise how difficult it is not being able to breathe. I have never known what it is like to walk up a hill without getting breathless.
Excuse my ranting. It has been one of those days when it all seems too much. No doubt tomorrow I shall wake up and be happy that at least I can walk.
Stay well
Tamara
There are some very interesting posts here. It seems as though we are the elephant in the room that everyone is trying to ignore. Mine was caused due to very low immunity because of RA drugs and I didn't get it until my 50s. I was most surprised when I met a lovely lady who's had it since she was 11. xx
So as I see this topic escaping to page 2 I am just wondering if we are just going to leave it expressing our anger and dissatisfaction at the injustice of the lack of funding, or if we are grouping together with a plan of action, if only to help the bronchs to come after us.
cx
I will sign my name to whatever anyone wants to do. I am only recently diagnosed (8 Months) but I want there to be a suitable treatment if I get worse with time.But Bronchiectasis research seems to be almost non existent and we need help now and in the future. If there are 60,00 people with it why has no one heard of it? Even doctors and nurses only have a limited knowledge that the condition exists at all.
PT x
Thanks for this post. It has never been explained to me what this condition is.
Every time I see my consultant which is about every 6 months we talk about the infections I have had, she mentions my Bronchiecstatis as though it is just one of those things (apparently popped up on the cat scan 4 years ago). It has never been given to me as any kind of diagnosis.
I am Gluten free now which has reduced the inflammation allowing me to reduce my steroid inhaler (a lot) which makes day to day life normal - although I still get an infection every few weeks.
I didn't know of anyone else with it
Do you think BLF could put non cf bronchiectasis on to it's research programme? I knew it was a Cinderella condition but am shocked about the things I have read here. Surely BLF ought to do something. I know it has been persistent ab out a lot of other things. I would sign any petition or contact MP or anything else suggested. I have just had my bi-annual letter from local medical practice saying I have not attended the asthma clinic. It is in capital letters on my file that Have BRONCHIECTASIS!!!!!!!!! Katie JJ
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