i feel that we all from time to time have problems with diagnosis, appointments, and O2 etc
some are life threatening, we all look for the nice way to solve it, if we put all our complaints together they would be more likely to get a more favourable outcome,
change and recognition,
what do you all think
I agree. I am fairly new on here but I thought this may be one of the roles undertaken by the BLF?
Yes a good idea don't know if the BLF will be able to help would be good if they could Val
Hi stitch think we would have to ask if they could help, rules regulations what they can and can't do type of thing? Val
my idea was that solving problems and improving the services, can only save money in the long run
the NHS say they want treatments patient led this applies
we on our own feel afraid sometimes in case we do not get look after as well, so it makes it more anonmouse so less chance of beining victamised as an individual,
i have always felt that we never tell medics as you do not bite the hand that feeds
A great idea - are you asking BLF directly to do this - they can start a new blog asking us all for feedback and they can then collate it all and campaign on it as your great suggestion.
An example .... I heard from my doc that a sputum test is now not recommended for a chest infection ...that's presumably a new NICE recommendation. I would have thought that a sputum test would save cash by finding out what is the best antibiotic to take. It would also reduce the harm of exacerbations....thus saving NHS more cash through less hospitalisations. Maybe I could have pushed for the test, but didn't, then needed an addiitional antibiotic to tackle it.
exactly i have found that i am now given sputum bottles as a matter of course, i believe that some GP's are trying to save money, they are also charging 10p for bottles at other surgeries, we want a universal treatment nation wide that is all, and this is not happening,
a current grip i have is how are O2 bottles sanitized between patients on refilling as they aree often filthy when i get them,
we need a consensus of many of us to get BLF to take it on board,
Good Morning Everyone
NICE and the British Thoracic Society issue guidelines on the treatment and management of conditions. "Guidelines" are exactly that - guidelines are not compulsory - however generally they are adopted by clinicians. However that can lead to variations across the UK in the way these guidelines are implemented.
The National Framework for COPD has been one way that the BLF has been succesful in trying to establish a standardised approach to COPD - but this isn't going to change things overnight - but it's a start.
It's true that some GP's have a "different approach" to others - we hear it all the time on the Helpline. And it's not that we ignore the experiences of the people who call - we do need to get better at using that experience - but probably need a focus.
When it comes to the new oxygen service contracts there is a specific route that everyone should follow when they are dissatisfied - of course in the first instance you should try and get the issue resolved through the oxygen company by using their complaints system - e.g. delays in delivery, cleanliness of cylinders etc. But also complain to the Local Oxygen service lead for your PCT - who are responsible for overseeing the new contracts and how the oxygen companies are performing.
I am going to ask other sin the BLF to chip into thsi discussion because it is a wider issue - remember the BLF is quite "new" at this web community - we need to make sure that we use the community to do exactly what I think you are suggesting - how we use the community to find out what the issues are etc.
Lets's see where thsi discussion goes.
Thanks
Mark
Hello Mark
I think it would really help if we as a group can share our concerns. I always feel like I am facing a huge battle as an indiividual when collectively we could perhaps make someone sit up and listen.
good morning Mark my idea has lost a bit of momentum as they do, ideas often need driving a bit, or reviving a bit from time to time
you were going to see what your colegues thought and there have been no more posts in this area, so what did they think,
i am in lincolnshire an area a bit devoide of breatheasy etc,
the oxygen team were going to organise a breatheasy near by but i do not believe that has happend this was twelve months ago,
regards
You will also find that the BLF regional teams in particular the regional managers work with service providers (GPs, Respiratory teams) and commissioners to make sure they meet national guidelines etc. We also help review services which often require the regions to carry out patient consultation/feedback events to make sure patients are receiving the best standard of care.
In the North West we have recently trained 11 Patient Leads/User representatives who are working on behalf of the BLF, their Local BE group and all respiratory patients to make sure we harness the patient voice.
In the future we will be holding Cluster meetings/patient forums (Merseyside, Cheshire, Greater Manchester, Lancashire and Cumbria) to provide a platform for respiratory patients to share their concerns and success with the BLF and the Patient Leads.
If you are interested in becoming a Patient Lead then please contact your local office for more information.
Thanks Rob
I too would be interested in the Cumbria platform. I can only find the local BE group in Workington, is this where it would be held?
Hello, the North West team are just planning the cluster meetings but due to the North West conference in October, the cluster meeting in cumbria is likly to be spring 2013, venue TBC as we also have a group in south cumbria.
If you have any concerns, questions the BE group in Workington are very proactive and continue to work with the local NHS.
The North West Office details re below.
Robert-Jon Cooper
Support and Development Manager
North West
Orleans House, Edmund Street
Liverpool L3 9NG
T 0151 224 7778
Thanks - hoping to attend the next BE meeting in August.
Cant get holiday insurance 
Can you help us better understand the experiences of those with a lung condition?
How to get some sleep? 
Loosing weight and getting very thin!
