this explains why, in Wales, I have been offered absolutely nothing over the past 18 months since diagnosis. Will now be seeing my GP tomorrow without the confidence to point to the BLF leaflet and say "but you have to......" . Can any one out there suggest a very good respitory (sp?) Consultant who also knows about Sjogrens? I will have to dig deep and pay privately, I fear. But my breathing is deteriorating as the months go by.
have only just noticed some thing tha... - Lung Conditions C...
have only just noticed some thing that explains alot.......all of the information booklets from BLF are for services available in ENGLAND.
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mishawaka
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Hi
Have you tried
I have just taken a quick look to see that site Stone and when I put in my post code it came up with a few available services for me...........only the Breath Easy group it mentions in Mold no longer runs (I tried to get info on that last week) and the three other services of a respitory instructors are all in places that (again!) tell me that I am out of area. After I do my dog walking duties, I will take another look at the site and thank you for letting me know about it.
Mishawaka, I was diagnosed over 2 years ago and have never been offered anything (I live in Northamptonshire). I'd never heard of PR until I came to this sight, I didn't realise the importance of exercising the lungs (although quite obvious really).
On both visits to the nurse for annual checks she's asked if I wanted anything to help my breathing.............and that's all! Take care xxx
Hi Poppy
I live in Northants and did a Pulmonary rehab course at Kettering hospital - it was brilliant.
Maggie
The BLF helpline will advise you about the NICE guidelines that even in Wales doctors should be aware of. NICE = National Institute of Clinical Excellence (Health and Care). You could search their website for more information yourself about recommended guidelines in treatments:
Try searching the Welsh Clinical register for respiratory consultants, or the 'Register for Repiratory Specialist in Wales' good luck with finding one that understands or specialises in sjogrens as well.
Going private will open up the search for you but you may have to travel beyond Wales.
Stone's provided a good link option too.
Good luck with it all.
mishawaka in reply to
Have just read a news note on BBC TV text news "NHS and care services patients need to become more demanding and fight for thier rights, a new watch dog body says. Health Watch urged the public to become savvy consumers rather than grateful patients." I think that is what you have been suggesting to me BlakeyC. I guess though that if my lung condition was my sole health challenege and that I hadnt already had to do battle to get help eventually with two other conditions that arent in the GPs Bluebird Book of Standard Medicine and if wasnt still working for my living ......I would be more appreciative of your very good and correct advice. I am not sure if I have it in me to keep looking up , researching, seeking confirmation , finding I am on the wrong track, making phone calls, waiting for responses to end back at square one. BUT and this is a big BUT, I do feel really supported by all of you on BLF site and I appreciate all of the replies that I have recieved.
in reply to mishawaka
Really do hope you achieve your goals Mishawaka, many of us are dealing with more than a lung illness and sometimes we run out of fight. NHS works as it does, PALS may be of help. But if I were you I would take a tip from Maggie44 and ask your GP if he can refer you to Dr Renzoni at the Royal Brompton. Perhaps phone the BLF helpline for their views on your rights as a patient regarding this, to be aware of these should your GP not agree to this.
Best wishes BC
PS the Sjorgens helpline may be able to advise further also concerning this matter.
Hi Misha
Could you cope with going to the Royal Brompton in Londaon? They treat people from all over the world, never mind the uk. It is where I go. The respiratory consultant I see is Dr Renzoni. She knows about Sjogren's and other auto-immune diseases and their place in repiratory diseases. She is a consultant on Professor A Wells' team.
I do hope you find someone to help you sooner rather than later. I feel so blessed to have my lovely rheumatologist at the local Northampton hospital. The Brompton said he had treated me in exactly the way they would have done.
Maggie
thanks maggie, am seeing my GP this afternoon and if he still hasnt got anything together for me than I will phone the Royal Brompton there after,
hope you are well jeannie
Hi Misha
Good - hope you get some help at last. When my rheumatologist realised my Sjogren's was starting to affect my lungs he transferred me to his 'Connective Tissue' clinic. Others he sees in this clinic usually have other auto-immune diseases such as rheumatoid arthritis, lupus etc and may have issues with other organs being affected. I suspect that there may be a similar approach to all - to damp down our immune systems because it is the white blood cells that usually attack infections etc that have got out of hand and attack our own bodies.
I was treated with steroids(to help avoid infection and azathioprine to damp down my immune system(this is a drug often used for people who have undergone a transplant - in order to help stop rejection of the new organ).
Hope this info helps - more knowledge about your health issue is usually helpful I think- particularly when it is relatively rare and unknown to many medical professionals.
Maggie
I am sure that lack of information is as bad in England as it is in Wales. I was diagnosed when I lived in England. Just told 'you have copd', given and inhaler. No other information, and sent on my way. My condition progresses and when I moved to Wales 14 years ago I was getting much more breathless. However, same as in England, nothing is offered. To be fair here in the part of Wales I live, in the valleys, treatment and information has been good. I have been provided a respiratory nurse, have seen consultants and been provided with oxygen for mobility and other drugs I require. The one thing I have found is if you are having any problems, You need to say so. loudly if need be. Otherwise it seems to be assumed you are ok. If there is a local breathe easy group to you join it, as other members can be a mine of information. Google everything you can about copd to learn all there is about it. Ask your doctor to be referred to pulmonary rehabilitation if you have not been on that course. Treatment depends on how advanced your copd is. When you reach copd you should have been assigned a respiratory nurse who you can contact at any time during the week to ask for help if needed, or information. Good luck but be assured. As an Englishman living in Wales I can assure you there is plenty of help, advice, and treatment here in Wales...
I was given nothing except inhalers in england. Moved to north Wales and have been given amazing amount of support ....including pr . Consultant. Tests for just about everything that can come as result of copd. I am sure that if you are more informed by this site it really helps you to know what to ask for .... so for me it has been a mix of being offered help and doc responding positively to my requests. Hope you manage to get similar support. X
sorry but that really has not been my experience here in north east Wales. No respiratory nurse, no information, no treatment, no pulmonary rehab group, no care plan, no recall for retesting, infact none of the standard NICE standards of practice have been offered despite my requests for all/any. AND I am glad thaty you have had a different erxperince and that you have recieved the help and advice that has been good for you. best wishes jeannie
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