Hi All,
Hope you are well. My Breathyeasy Admin lady has informed us that the NHS has withdrawn all funding for COPD across the UK, does anyone know about this? They are issuing us with a letter of complaint. This is very serious and will impact the care we receive, which I am sure you will agree is pretty good. I know the Lung Foundation is starting its fight but we need to start asking questions and chasing (not literally!) our MP's.
Jackie
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This is not good news and if true has to be fought. Sincerely hope that this is not the work of the new Health Minister.
That's quite a sweeping statement the Breathe Easy lady made and I find it very hard to believe. Did she back her statement up with any evidence ? I'm confused as to breadth of the term "all funding" and would like to know more before I make any criticisms.
If the Lung Foundation is getting up a campaign, then it is very serious. I suggest you all either go onto their website or call them for more information. I did not take a letter they were handing out for people to sign, I asked for it to be emailed to me, so as soon as I get it I will send it onto you.
Jackie
It seems on the face of this it is true. They will not be renewing the funding that runs out in 2013. There is a piece about this in BLF's Autum addition of Breathing Space and you can also get a template letter to send to your MP.
I am sure someone from BLF will be on here soon to give us all the information.
*polly
Have asked the question ............ no direct answer. We should await evidence to back this statement up.........then act. Try not to worry too much yet. Will keep looking & asking. Have several colleagues in the NHS. Take care all. Marilyn x
Hi
Someone will be along from our Campaigns team to explain soon.
Thanks
Mark
I think that your Breathyeasy Admin lady has misunderstood the situation. Please don't worry before we know the facts!
Jo
Hi Chinka and everyone.
Just thought I'd clarify so as not to worry people unnecessarily: the NHS isn't removing funding for all COPD care. What has happened is that respiratory disease (including COPD) has not been included within the four therapy areas covered by the new list of ' Strategic Clinical Networks' (SCNs) - organisations being set up to improve health services for specific conditions under the reformed NHS.
Previously (as you may know), care for people with respiratory and lung disease had benefited from the work of 'Regional Respiratory Programme Boards' - regional organisations set up with funding and support from the Department of Health to help healthcare professionals work together to improve respiratory care and services in the local area.
However, funding for these boards runs out in 2013 when the new SCNs become active. This will not see all funding for COPD care withdrawn. However, it could potentially mean that care for respiratory illnesses such as COPD does not improve at the same rate as the therapy areas (such as cancer and cardiovascular disease) that will continue to receive funding and support through the new SCNs.
This is why the BLF are working to try and ensure that respiratory disease is not neglected in the new NHS reforms, and why many Breathe Easy group members around the country are writing to their MP expressing their concerns.
I hope that clarifies things a litte? If you have any questions about this, please let us know in this thread, or email press@blf.org.uk.
is there a letter of complaint or petition by BLF that we can sign
how can we ,the patients,carers and family help in this fight for recognition and status ?
i would be interested to see what it is the funds they are withdrawing are for - is it PR and breathe easy? or are they planning to withdraw ALL funds?
Just had a look on the BLF site but could find nothing so am eager to find out what the plans are and will comment after that.
Hi - these funds aren't for PR or Breathe Easy groups, and there will still be funds available to treat COPD on the NHS. What this refers to is funding and support that the Department of Health currently provides to help bring about improvements in respiratory care at regional level, but which is planned to be stopped in 2013 when the new Strategic Clinical Networks (mentioned above) are introduced.
We are still working to try and ensure respiratory disease does not suffer in the new NHS, so there is nothing on the website just yet. If you have any questions, you can speak to your local BLF regional office, which can be found on our website using the link below.
I hope that helps?
that a relief - i have not used either yet but o many of my friends on here get a great deal of benefit from them xxx
hi all....................
i cant find the template for the letter to use for my mp?
and id like more information before i can make any letter to my mp...........
also is this regional organisations ?
as id like to know wot this means for us here in Scotland aswell as every other region.....
many thanks.
Hi Roger. These changes affect England only, so people in Scotland needn't worry about this.
Thank you for the clarity. I think you are correct to be active in ensuring to care for COPD continues. I will do all I can to assist my Breatheasy Group.
regards,
Jackie
Thanks Jackie. NHS care for COPD will definitely continue, but we will do whatever we can to stop this additional funding and support being lost.
Hi Chinka,
Don't panic, we're not all doomed.
cardiovascular disease and cancer will continue to receive funding and support for C.O.P.D. will not be withdrawn, it will just be "stopped" in 2013.
The B.L.F. and the M.P.s have been busy it seems trying to create a better future for C.O.P.D. people by not having funding withdrawn.
When funding stops in 2013 that does not mean that we will be neglected
Hi. Just to clarify in case I wasn't clear: the NHS will continue to provide care for people with COPD. However, under current plans, the funding and support that the Department of Health currently provides to help bring about improvements in respiratory care at regional level will stop in 2013 when the new Strategic Clinical Networks (mentioned in my first post) are introduced.
Hi, this has been discussed at my BE group and we are sending letters to our MPs. Then, as I am the press officer for the group, a press release is going to the local newspaper and radio station. It definitely needs action to be taken, as COPD becomes the overlooked and ignored illness again. Take care, Richard.
Thanks for getting involved – it’s great that you are all sending letters to your MP. In terms of contacting the media, as we are currently in discussions with the Department of Health and key individuals within the NHS about this, and as we need to give our MPs a little time to react to our letters, it might be best to not going to the press just yet. Hopefully, we can achieve the right outcome for respiratory disease patients by talking rationally with the key people and by asking our MPs for support. If we don't see an adequate response in due course, however, we will definitely be in contact with all Breathe Easy groups to discuss with you all what further possible action we can take. Thanks!
To BLF Comms , Sorry Rationallity has went out the window , the time to act is now . recent stories of Gut backs on the web are not over active immagination but true from the lowley person that cant walk more than 100 mtrs because the have COPd and angina being told you can use a manuel wheelchair so dont qualify to a Man given 6mths to live with Cancer ( but you are fit to work for 5 of them) to the olympian ( dla ) you no longer qualify , Yet if you take illegal drugs you will .
This does seem crazy when 1 in 7 people in this country have a lung problem. I wasn't aware that the survival rates were lower here than in a lot of countries - that is scarey!
Surely lung disease is the most prolific of any disease in the country so I dont know what this lot in government are thinking. Oh hold on they probably think all lung disease is caused by smoking therefore it is our own fault!!
Come the revolution......Bev x
Unfortunately it is our fault, there's no point in denying it. Personally if it came to me or my grandchilds future, I'd vote for him everytime. What really annoys me is that the tobacco barons are still allowed to pedal their poison legally. It's scandalous
Here! Here! I am with you on that one!xxx
Mmmmm up to a point I agree with you. But not everyone with lung disease is or was a smoker. And as only 1 in 5 smokers get COPD we have been unlucky too. Also the dangers of smoking weren't known for many years! Many of those who stopped when the dangers were known can still get lung disease many years afterwards. Also those who have Alpha 1 - they are included in the lung disease stats and lumped along with rest of us.
And if you take it to the extreme aren't many illnesses a direct or indirect result or poor lifestyles? Eg. someone who is very overweight who gets osetoarthritis (I have a friend who is 22 stone who has it).
I think it is very dangerous territory to make value judgements...
Bev x
it is our fault in as much as we smoked. we were allowed to ,encouraged to by slick ,glossy ads in our youth
we were not told of the dangers then
AND TOBACCO PRODUCTS ARE STILL ON SALE
Whose fault is it?
I used to smoke but got COPD from a lung infection while living at 8500 feet in Bolivia. I had no problem before the infection.
Of course the GP here said "do you smoke?"
But then if I had made an appointment for bunions I would have been asked the same thing.
Our law makers - politicians don't give a damn because they don't have to rely on the NHS and get preferential treatment anyway.
If we let them (MPs) the already slowly increasing privatisation will get worse to the point where we can't afford it - exactly as happened with dentistry.
We - as a nation - now have worse teeth than most countries in Europe.
Tax the tobacco companies out of existence - our goverment is doing this to small businesses - such as small town centre shops - so why not?
Hi Everybody, I think the term "Strategic Clinical Networks" needs to be explained.
Who are they?
What will they do?
What do they hope to achieve that is different to what they are doing now?
Are they intending to cut funding?
Why are they trying to fix something that aint broke?
And probably a million other questions.
Is it just another tory ploy to cut funds for the sick and disabled?
Keep Well
Hi Rocky,
A slightly jargon-filled definition of Strategic Clinical Networks (SCNs) can be found on the NHS Commissioning Board Authority website via the link below.
commissioningboard.nhs.uk/2...
Essentially, under the new reformed NHS, SCNs will help local GPs, nurses, consultants and other relevant healthcare professionals work together to bring about innovations and improvements in the standard of care and services provided by the NHS, for the benefit of patients.
At the moment, local respiratory networks have helped do this for patients with respiratory disease. However, when the funding for the 'Regional Respiratory Programme Boards' (who currently administer these respiratory networks) stops in 2013, we are concerned that, without respiratory disease being included in one of the new SCNs, patients with respiratory disease might miss out on the improvements in care and services that this funding and support can help bring about.
This is why the BLF is in contact with the Deparment of Health about this, and why many people are using our template letter to write to their local MP to try and make sure patients with respiratory disease do not miss out in this way.
I hope that makes things a little clearer?
Neither does this effect Wales. Only England. This is disgusting though. COPD is one of the highest rated killers in the UK. While cancers and heart disease are dropping down the list, copd is rising. I am sure though that the BLF is going to be fighting very hard for the cause of you guys in England.
Finding it hard to understand how we have come to this situation when improvements in care services were drawn up how can respiratory care have been overlooked in a health service that has "missing millions" of patients that will come into a poorly resourced sector of treatment.
Hi All,
Sorry my blog caused so much worry, as you can see the British Lung Foundation answered my query. All I know is we should trust and support what the BLF does and continue to be vigilant. I must say I find it disappointing that NHS consider that the current level of care is sufficient, it is good but there is always room for improvement. There are so many breakthroughs in many areas but there needs to be more investment in the research of COPD and whatever you do, join or call your local Breatheasy Group, they can provide you with a letter already written for you to sign and send to your Local MP. Breatheasy don't costs anything as such, just a small cost for your cuppa just go along, its a nice environment with people like ourselves, they usually have a speaker then a cuppa, it lasts 2 hours once a month.
HI
I have looked on BLF site and cant find the letter to download and send to MP
where will i find this ?
Here you go brujapatsy:-
For a copy of BLF template letter send an email to malcolm.reid@blf.org.uk or
call 020 7688 5555
You can get a copy from your local breathe group too if you are contact with one.
Thanks Zoee for answering brujapatsy.
This is a worry , as its hard to find understanding gps now(another thread) I also find it confusing as to how they can when respiritory deceases has a knock on effect on other problems like the heart.
I agree, it looks for the Americans are leading the way with regard to research. As to my area, I cannot complain, my doc is great and we have a good respiratory team at my local hospital, although I am now at the Brompton, but they can't do much, my COPD is at its very severe stage, but hey, keep on smiling
I was not aware of the withdrawal of funds for COPD sufferers - but am not surprised, as I have been waiting for 2 years now for some physio-rehab!!!! Consultant has requested a physio at the hospital to send me an appt at least 3 times! So perhaps this is where they are cutting corners, as physios are expensive and scarce!!
Marguerite2013
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All ways try to be happy 
Depression !! The hidden danger for COPD sufferers.
For All visiting BLF
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