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Would you like to help raise awareness of breathlessness in Oldham and Rochdale?

BethanyBateman profile image
5 Replies

Hello all. I hope you don’t mind me posting another request on here but another opportunity has come up for patients to get involved in raising awareness of lung disease.

Public Health England is planning a local breathlessness campaign, which will launch in just a couple of weeks in Oldham and Rochdale. They have asked me to help them to find local case studies so that they can tell people what it’s really like living with breathlessness and how important it is to get it checked out.

They are looking for someone in these areas, aged over 50, who has been affected by breathlessness. This could be someone who was suffering breathlessness and went to see their doctor, to be diagnosed with COPD, or lung cancer. Alternatively if you have lost a loved one, to one of these conditions, and recall that they suffered from breathlessness then you may also be able to get involved.

Case studies like these or similar nature would be great support for the campaign. If you think that your story is similar to what they’re looking for and would like to help then it would be great to hear from you. Please email me on PatientVoice@blf.org.uk, or give me a call on 0207 688 5557.

Thank you for reading.

Bethany

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BethanyBateman profile image
BethanyBateman
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5 Replies
hopetorun profile image
hopetorun

Hi bethany Have you tried the local social care teams in the local council

BethanyBateman profile image
BethanyBateman in reply to hopetorun

I haven't but I'll suggest it. Thanks for the tip!

I had a aunt very dear one pass xmas with what who knows even hospital did not know.

But what i do know is its very complacated this cacer business or is it gp neglect

As it is will never know as we cant ask her did she know.

During her last days 4 weeks in all hospital could not determine cause of her breathing problems she sufferd acidosis pneumonia

cor pulmate

All the nastys assoseated with Co2 of 8 and 14 was well lets say 10 finishes most of but 14 was lets say she was a fighter.

In that time hospital was looking for causes as most times was to ill weak to where xrays or ct scan.

But hospital did lung biopsy camera bit and could not say 100% if it was a lung tumour or abcess.

But it was determind it had gone to far and even the machine could not help as her co2 would start to rise .. now my aunt never told anyone and recived no care upto that day she went into hospital was not breathless or coughing up blood.

Only thing a will say is few days befour went in hospital she started leaning on her side and sufferd bit of gastric refux.

But what can you say she just use to say am ok its just my back playing up.

There are few questions i would not let lie but as her nephew i would not let stuff lie as there is few issues

(1) i thought hospitals under law had to know what was up with someone for 14 days befoure thay turn machine off.

(2) this hole business of cancer or abcess .. you would think a hospital would be able to conferm ever-one am not saying things was straight forward as pneuomea can mask lung cancer or abceses as even hospital did't know .. am no expert but i thought seppsis kills suffers .. and thats what i think went on she had lots of problems then her liver kidneys started shuting down.

(4) is very sad and i dont know how i feel about being parilised by the hospital .. as to see my aunt and know if she wanted to get up and run out the door she could not ... as she had been paralysed .. Just fills me with dred its not like i dont know why thay do it because i do .. Its just so fial

BethanyBateman profile image
BethanyBateman in reply to

Daz I am so sorry to hear what your aunt, and you and the rest of her family, have been through.

I wish I could answer your questions but I am as in the dark as you are. If you call our helpline then they may be able to find answers to some of your questions, such as the rules about turning the machine off, but you may have to go back to the hospital to find the rest. I really hope you do get the answers you're looking for some day.

Bethany

in reply to BethanyBateman

Hi bethany cheers and thanks am just greatfull she was delerious so assume would of been out of it.

Its just horrable this being parilised .. anyway cheers thanks for reply

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