Bronchiectasis specialist needed

[KPHR]

Hi all, I'm new to this community and would like some help. My mum has been diagnosed with bronchectasis and we are searching for a good specialist/consultant in the Leicestershire/East Midlands region. It's seems that the symptoms have not been diagnosed correctly for many years and only recently after a spell in hospital has it been diagnosed. She is suffering constant chest infections that are currently being treated with broad spectrum antibiotics. We are unsure whether or no she's getting the best treatment right now as it's now being dealt with by the GP's at the local surgery and they really don't seem to know very much about the disease.

Thank you all and any advice would be gratefully received.

[Hidden]

Hi KPHR,

Welcome to the site and hopefully the right treatment and maintenance at last for your Mum. Funnily enough, it was a Doctor practising at the old Groby Road Hospital in Leicester who saved my life in 1956 with a radical treatment regime that was the basis for that practised for bronch today. I think that you are lucky. I do believe that Leicester has an an excellent chest unit and bronchiectasis speciality. The best thing to do is to google the hospitals in your area, looking for chest consultants who specialise in Bronchiectasis. Then tell your GP that this is the person whom you want your Mum referred to. Don't take no for an answer. Of course, your GP may know of such a consultant but usually we have to do the spade work ourselves. My consultant is at the Queen Elizabeth Hospital Birmingham and her name is Anita Sullivan but Ithink that you will find one in Leicester. Good luck. Do let us know how you go on.

[mrsmummy]

Good stuff from Stillstanding. You may also want to ring the BLF helpline where you will find specialist nurses to help and advise. 03000 030 555 during office hours.

[Watfordgirl]

Hi KPHR,

I have a different problem but just wanted to say welcome. Your mum is lucky to have you to look into this for her. Good luck.

Sue x

[Hidden]

Dr Simon Range is an expert in bronchiectasis & cystic fibrosis & runs a highly-regarded unit at Glenfield Hospital. The unit's tel no is 0116 250 2667. I don't go to Glenfield, as I'm treated at the Brompton in London (also excellent) but have heard & read great reviews of Dr Range & his team

[portiasmummy]

I agree with Hanne62. I used to go to see the specialist at Peterborough hospital and thought I was receiving good treatment, until my daughter started asking why I wasn't receiving such and such treatment. Apparently she had been talking to a friend whose mother had bronchiectasis and she was being treated totally differently to me! She got the name of the specialist this lady was seeing - Dr Range, Groby Road. I went to see my GP, who kindly told me there was no way he would refer me. Apparently I didn't have the right to see another specialist, he said, even though the specialist I had been seeing had got to the stage of seeing me one a year, did no more tests and said she would see me again in another year. I was getting nowhere. I managed to get a telephone appt with another GP in the practice. He said that as they now had to pay to refer a patient they were very reluctant to do so. He asked me why I wanted to change and I told him the truth - that I felt that, even though I was no spring chicken, I still enjoyed living and I had been left in a corner to die. He seemed shocked by that! Don't know why because patients do have feelings. He said that he would fight my corner when they had their weekly meeting. I got a phone call within a week to say he was referring me.

After seeing Dr Range I felt that someone cared. I see Dr Range every six months and I can phone if I need to see him in between time. His respiratory physiotherapist is also excellent.

Sorry, I do go on don't I!

[KPHR]

I must say a big thankyou for all who have taken the time to reply and assist my mum and I. I will follow up with Hanne62's advice and give the Glenfield unit a call. Once again, THANKYOU ALL!