update from teaky

I was given the ds1500 read it when I got home.i was surprised to read I am end stage copd & pulmonary fibrosis I was shocked to see the date of 19/04/13.that I was end stage coped.going to see consultat I will be wanting to know why I was not given ds1500 then.i think that was unreasonable of him. I should have been on highest benefits isaw him in april and he said nothing to me I was end stage copd

[Hidden]

ha ,you must write all your concerns down,when you see the con,that is shameful treatment ,take someone with you,,im really glad your hear,stay of the cigs,but have a little drink,,dont give up teaky,,if you need oxygen ,get it,and prove them wrong,bernicexx

[appyalison]

That can't be right teaky. Surely he should have told you what stage you are at when you were in front of him. Why should he keep it from you? I thought we were supposed to be treated like adults these days. Can benefits be back dated? Good luck. Alison.

[mattcass]

Hi Teaky, You have every right to feel annoyed but to be losing out in what is your right financial wise, write down what a difference that money would have made, Go to his office take someone with you and let him feel your anger and make him feel guilty about the situation and he must rectify this either with the DWP getting it backdated or you will take action against him or his practice. And why did he not tell you verbally when you saw him another question for him to answer. Do Get Him Teaky . Mattcass

[omg11]

Hi, I dont know where you live but if anyone needs an advocate or wants to make an NHS complaint speak to national charity POhWER. They are excellent. Found at pohwer.net I used to work for them. Get what you are entitled to and if you are too tired to fight ask POhWER to help. Thinking of you, Kay xx

[Gidge]

Hi Teaky - I have found a well reasoned letter often gets a good response from a consultant; I don't think they realise the impact of what is said or implied sometimes. If you write, it gives you a chance to consider in depth what points you want to make - if you are talking to someone it is too easy to gt upset/sidetracked/annoyed/ forget a point you wanted to make. Good luck ! I wrote to the consultant who just said 'You have fibrosis, your father had it so make sure your children don't smoke. There is no treatment, don't bother with inhalers, it's progressive and unpredictable. I will see you in a year then discharge you to GP care' After contacting the BLF helpline I wrote to him expressing my disappointment at our consultation,the lack of any support or suggestions fr the way forward etc; he phoned, we had a long chat, he agreed that lung cancer gets a lot more support - his funding for specialist nurses attached to his clinics has been taken away so he had no resources for support. By then we had seen a community respiratory nurse as a result of my asking for Pulmonary Rehab - although the GP didn't know he could refer direct for that (!) The nurse noted how much my husband desaturated on little exertion - I mentioned this in the letter and the consultant offered to arrange oxygen there and then. When my husband was in hospital last year with a sudden worsening, he had every test going, and the consultant was present at his bronchoscopy - I think he remembers us !! Sadly, it is now too late to influence the progress of the disease........Gill

[Joewarren]

Hi

you don't say why you were given the DS1500 now instead of when he wrote it in April 13. Try not to be too upset by it as it really is just a formality of paper work as far as the DWP are concerned and you should be backdated to higher rate DLA as soon as you contact the DWP and they are in possession of the DS1500. Am not trying to justify the consultant not telling you but my experience is that unless you ask the specific question, "am I at end stage disease" they presume you don't want to know yet. Any way to be at end stage disease does not give you a specific amount of time as far as your consultant is concerned, only as far as the DWP are concerned, because of the financial implications and implications of law that judges you entitled to certain benefits. No body can really know how long we've got left at end stage disease. I had my DS1500 issued 20 months age and hope not to be going anywhere for a while

Joe warren

[longlungs in reply to Joewarren]

Hello Joewarren good for you and long may you continue Im so glad you posted today Im sure that must have reassured Teaky I hope so anyway.Thank-you happy days. Janexx

[longlungs]

Well thats very encouraging from Joewarren dont you think Teaky?See theres life in the old dog yet!Doesnt it make you angry the way a doc can just write you off in a thoughtless sentence, dont accept it fight back at your doc complain how very dare he know what I mean.Im getting all unnecessary Teaky grrrr,and make sure you get whats owed too you. Janexx