I sent a letter to my MP about the shameful issue of lung disease not being included in the above. I copied that letter to my local paper and they have emailed me asking for more info. A senior reporter said "I'm keen to find out more about this issue". I have sent them all of Parvati's hard work - the links she found to the underlying information. I will let you know if they publish anything.
Strategic Clinical Networks - Lung Conditions C...
Strategic Clinical Networks
51 Replies
•
Good on you AuntyMary. Action speak louder than words as they say. Lets hope you hear something soon. Marilyn x
• in reply tonannie63
I am hoping too Marilyn.
Thats brilliant antymary well done. Lets hope something comes of it. x
• in reply to
Fingers crossed.
Hi auntymary .Keep up the good work.Richard Cornish
• in reply toKingoftheCocktails
Thanks, but Parvati did all the real work.
Aunty Mary you are a real trooper! It's great that you have got a response from the reporter too - I am ashamed to say I only went as far as writing to my MP. I intended raising the issue at my local weekly 'COPD Breathers' group this afternoon, but I am back to bed in a moment - I'm only up for anti bio's, fresh tissues and water, as I am pretty poorly. I expect to be on the mend as soon as the ab's start doing their job, so hopefully by the weekend I will be back on my feet - have to see my daughter off to Uni then too.
Incidentally, the one copd statistic that usually grabs folks attention is that in England and Wales alone, someone dies from copd every twenty minutes. It has taken me that long to write this!
Bless you for spending your time and effort on this aunty mary, and any others who have contacted their MP. While it may not seem such a big thing to do , between us , over time, we may be helping to save lives. P. xxx
• in reply to
So sorry you are under the weather at the moment, so many of us seem to be.
We are all in the same boat really and the least we can do is make pepole aware. The letter template is available from blf and takes only a minute or so to personalise and send off. However, I would have had nothing to send the reporter in response to his query but for your research - well done. Hope you feel better soon.
• in reply to
Best to stay in bed Parvarti, please don't go to the COPD Breathers group this afternoon if you have any infection, they won't thank you for sharing that with them. An email may be a safer method of communication at this time, helping others to stay healthy and preserving their own lung health. Hope you are feeling better soon.
• in reply to
Hard enough fighting illness without having to fight for your rights as well, wish there was more help with this as my DIY days are done
Hi Mary. We LOVE your enthusiasm for this cause, and really appreciate it. There are now a lot of people writing to their MPs, so hopefully at least some will sit up and listen and contact the new secretary of state about what is a really important issue.
Regarding contacting the media, however, we at the BLF are currently just waiting to see if the MPs do act on our letters and if our discussions with the Department of Health and senior NHS figures come to anything first. Hopefully these more diplomatic approaches will bring about the results we're all after - it can often be more effective do try and have these discussions away from the public eye if possible. We therefore recommend anyone equally angry about this situation do the same and hold off from contacting the press just yet. We can always look at ways of applying additional pressure at a later date if these discussions don't achieve a suitable outcome for us.
In the meantime, we agree that Parvati's explanations have been very clear and precise on this - thanks Parvati! If the journalist is still interested in writing about this, you can always give them the BLF press office contact details (020 7688 5580 / press@blf.org.uk) if they need to discuss this at all.
Thanks again for writing to your MP - let's hope our efforts make the difference!
• in reply toBLFCommsTeam
Good idea asking the papers to contact BLF press office, to be sure that accuracy is reported. So many seem to have the wrong end of the stick and may well do the cause damage were it inaccurately reported.
• in reply toBLFCommsTeam
The BLF can wait and see. I chose not to. I believe that we need to be very proactive to ensure any action is taken on this matter and I, for one, am tired of being ignored and discounted.
Hergernt• in reply to
Agree proactive and have your voice heard when starting from a lower standard of care there is little to loose by drawing attention to our plight taking into account how this will affect us personally there can not be a gagging order on this matter.
Wishing you the strength to keep fighting the good fight.
• in reply toHergernt
Thanks a lot Hergernt. We are all in this together.
Wrote to my MP and the secretary thanked me for bringing this to their attention as they were un- aware of any issue regarding respiratory health reform. They have promised to get back to me when they have more information.
• in reply to
Well done Millstone.
Im sorry to have to say this but as a BLF member and a person living with COPD I believe that the BLF softly softly approach is the very opposite of what is needed now. You negotiated the COPD Strategy last year with the Department of Health away from of the public eye and look what has happened - the Strategy has been ignored when it comes to real decision making.
The only chance this government will take any notice at all is when the people speak out publicly and in large numbers.
I think it was excellent that AuntieMary has contacted the media, and to suggest that people with lung disease should not be able to take action individually if they wish to in defence of their own healthcare feels both patronising and disempowering.
My partner and I believe that the BLF should be encouraging all its members and BE groups not only to write to their MPs but to engage in public discussion through the press and any other public medium.
• in reply toO2Trees
Still gotta get those facts straight to win any cause, any one reporting inaccurately will lose the cause credibility. Lots of people have been posting inaccurate inflammatory information and disregarding accurate information.
• in reply to
Zoe, I think you will find that forwarding the blf's own letter gives accurate information. I also believe that any newspaper would check accuracy before reporting.
O2Trees• in reply to
You're right Zoee, certainly about people misunderstanding the loss of our own Strategic Clinical Networks and panicking that we are going to lose all our standard clinical care.
Yes, I agree, get the message right, but let's get the message out there. jean
• in reply toO2Trees
I totally agree with you. We need to make a fuss, individually and collectively. Sometimes, it is the outcry from the general public which turns the tables.
x
Hi. We are absolutely trying to empower, rather than disempower, everyone in their action with this issue - that's why we have supported people with the letters to their MPs, and why we're getting involved in all the discussion threads on the web community, providing as much info as we can. We have also said how we think it is brilliant that Aunty Mary and so many of you have got involved with this issue, and have stated we are here in the press office and on the helpline if any would like to speak to us about this. I apologise if this came across as patronising.
Our main purpose is to do whatever we can to ensure we get the right outcome for people with COPD and other lung diseases. From our experience with issues like this, our feeling is that the right approach is to engage in discussions with the key decision makers now, and then consider additional action at a later stage if this isn't successful. The minute we feel that our current approach isn't working and that further action, such as public discussion in the press, is required, we will be in touch with members of the web community, BLF members and with Breathe Easy groups all round the country to discuss this with them, so that any action we do take is done in a co-ordinated way to maximum effect.
That said, this is just our advice and the approach we feel is right - anyone is of course free to pursue whatever course of action they think is best. Let's remember, we're all after the same outcome with this.
Thanks again for getting involved and showing such passion about this issue.
Dear Comms Team, the BLF approach is indeed the traditional way much policy has been negotiated in this country. But we feel we have moved into an entirely different situation. For example, many people now feel that if the medical professions and the major health charities had voiced stronger concerns about the Health and Social Care Act when the Bill was first published in January 2011, the result might have been different. The way decisions about priorities in the commissioning of clinical services are now taken is a direct result of the new ethos within the NHS since the Act was passed.
Of course we all want the same outcome but we will have to agree to differ about how we go about achieving it. jean and rita (partner and carer)
Thanks Jean and Rita. I think we will have to disagree about the approach at this stage, but let's hope we are successful regardless of the tactics. Thanks for your passion, and all the best - we're available through the usual channels if we can help at any time.
What facts are we waiting for then that will get the story straight - is the UK's third biggest killer not enough facts for people to understand.
3 people a day die of Asthma attacks while 3 every hour die of COPD and related diseases
• in reply to
Correct arusure. The statistics really speak for themselves.
• in reply to
nuff said if they publicise that how can money go to others before this is a lot better than it is now at the bottom of the Europe league for COPD care
• in reply to
Don't think any one is disputing that at all arusure, the issue is to maintain equal care quality, so that improvements in treatment along with Wales, Ireland, Scotland and the care in respiratory illness (along with Cancer and Heart illness) is equal within the SCN and throughout UK.
For further explanation, refer BLF Comms Teams Comments : blf.healthunlocked.com/blog...
Hergernt• in reply to
Puzzled about who we will be equal with if we do not have the same funding as other groups, I am in favour of fair division of resources it does not appear to be what will happen in 2013 when respiratory care will go backwards .
• in reply toHergernt
If you check out the link I included above paying attention to the comments made by BLF Comms Team all will become clearer, at the current time this situation only applies to respiratory patients residing in England, the rest of UK is not yet affected.
It is just not good enough for us to stay where we are with a post code lottery on diagnosis, rehab and other care. It has to get better or we should stop looking for people with mild illness because we can not care for severe and worse now before funding is cut.
• in reply topotznpans
My thoughts exactly. If more people were diagnosed at an earlier stage there would surely be fewer deaths.
If we knew what had been said already then it would not need saying again with new voices different ideas are bought in that can change how it is treated by the government.
You are right - the BLF have spoken to the right people and lung diseases have been rejected as a suitable cause for the Strategic Clinical Networks. I don't pretent to understand all the facts, but the BLF letter sets the issue out well and the statistics uncovered make a very simple yet hard hitting point.
1. More of us are dying than need to.
2. There is a way of reducing the number of deaths.
3. That way is not being taken.
Which is why a groundswell of public support may be all that is left to us.
O2Trees• in reply to
How true x
If I had been diagnosed earlier, they said I would not have had my (half left) lung removed. we must fight for this. the comittee should be asked to make that decision again... in a sealed room with the 02 being sucked out !
• in reply tozube-UK
Sorry you had this experience zube. So many of us are left in ignorance for too long. And the really sad thing is I, like the majority of people in this country, had never heard of COPD until I was told I was in the severe stage of the disease. That is one of the reasons we need the isse to be publisized. I have had severe COPD for a number of years now, but only heard of the BLF this year. How can we muster support for something most people have never heard of?
Sorry to hear this has happened to you Zube. This is why the BLF's campaign to find the missing millions is so important - intervening with clinical care and lifestyle advice to stabilise the condition at its mild stage enables people with copd to have a pretty near normal quality of life AND saves the NHS money - a no brainer.
jean
If you look back to Parvati's original blog she explains it very well.
Incidentally, you may all be interested to learn that we've just had confirmation that John Healey MP has already contacted the Secretary of State about this issue. Well done everyone in Rotherham and Barnsley area who wrote to Mr Healey calling for action!
• in reply toBLFCommsTeam
Great news thanks for letting us know. Lets hope all lung patients will contact their MPs who will each in turn contact the Secretary of State about this issue. Power to those who act. Wishing all every success with their MP.
Well done John Healey. 
rubberball• in reply to
first good news that has been on this the rest is a disaster asking sick people to fight for decent care for them and those that will be joining us looking for care.
Does not affect Scotland or Wales that have their own Parliaments which also decide on free prescriptions for all not trying to take money off people as a tax on illness.
Only here are we accepting that we do not need any improvement in care
• in reply torubberball
Whilst all knowing that we desperately do.
Agreed.
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PIP
Afternoon fellow sufferers.
Have a question if anybody can help x
Had an appointment with the WCA i arrived to find out they had cancelled 
PIP
