Confusion reigns

I have managed to get to see a GP this morning but it is not someone I have every seen before. The oncologist said the GP would have access to the X ray results but they say they don't. 

I have been awake most of the night and feel that if the funding request is turned down I need to fight the decision but that will take strength and knowledge. The first hurdle will be making sure the request is even made by the oncologist as I have visions of him forgetting to do it or putting it off thinking I will accept things. 

Oh Maz what a mess, i can't imagine how youre feeling having an oncologist that cant read your notes and doesnt have a clue whats going on ! Have you thought about asking for a second opinion with a different doctor/hospital. I hope you get the funding because as you say what is the point of giving you drugs that dont work for you. Sending you a virtual hug. Lynn 2 xx

Thanks Lynn I am just hoping that he has done a funding request and also wondering if the patient gets to challenge any decision once it is made. Last week when I was so unwell and needed to be admitted he really did step up to the mark but this week he was back to being very evasive. If I had not got the letter and call from the Chemo ward I am sure I would never have known I needed an inhaler to help me breathe easier, I would not have found out Paclitaxel and a Port were no longer an option or that 2 other drugs had been decided on and put on my records without my knowledge or consent, or that the liver Mets were growing again. All of this information I had to pull out of him whatever happened to openness and transparency and working with the patient. I also hope he has contacted the chemo nurses otherwise I will have all this to go through again next month. 

I am going to chase things up again next week and see if the funding letter has been done and when an answer is likely. Then if needed I am going to request a second opinion and also seek advice about what else I can do

I just feel that this is so important for me that I cannot just give up and die. 

Hi Maz

It's not good enough - you should be cared for, listened to etc

Would a word with PALS help? You don't need to be fighting the healthcare system as well as the disease xx

Not sure what is going on with PALS at our hospital they were supposed to be helping with something else when I was given drugs I was allergic to and had put it in writing that I was not agreeing to any treatment if they were used. They passed it on to someone else I got a letter saying that it was being investigated and I would hear by 1st Nov and still have not heard anything. I suppose I should chase that aswell. 

I expect I have to wait until they put in writing that they are refusing funding before I can try to do something. At present I was just told by the oncologist it had been refused but the way he was talking yesterday I am not sure now if he actually asked for it or put my case forward. We are very much at the mercy of others and no doubt alot of hospital politics are involved. 

I requested the scan as I needed to see if it was the drug that was working and I think the fact it has started to grow again proves it was. Had it of stayed the same at least I could have thought well it was my body not the drug that was fighting the cancer and accepted the decision. But when you know there is something that works it's hard to accept you are being allowed to get worse due to funding. I know I will be one of many but it doesn't make it right. 

Hi Maz,

Of course it doesn't make it right. You are entitled to whatever treatment will work for you regardless of the cost.

I would like to ask what the ESA is and how you managed to owe all that tax? Also I read what Tvman wrote and wonder if I am the only one who doesn't know what all these initials mean? Like MLA, HMLC etc!  Maybe he can explain to me if he has the time. Things are different in Scotland where I am so we probably use different initials but maybe with similar meanings???

Anyway Maz, what I was going to suggest was that if you have difficulty in getting funding for your treatment, have you given any thought to starting a "JUST GIVING PAGE" for yourself? I know a few people who went down this route and were successful. I for one would be more than willing to contribute if you decide to try this!

Someone I know had raised about £300 and then was told she would be given funding for the drug she needed. She then donated the money raised to McMillan and another charity and of course people who had donated were all in favour of this! Just a thought! Don't give up, fight for what you need!

Morning  Annette

ESA is employment support allowance. I don't know 2 much about it. An advisor from Macmillan said I might have 2 go it way back when I had bn off work for 5 months & then was considering going back 2 work but didnt know how many hours I would manage. This stubborn Scots woman said C wasn't gonna get the better of her & went back full time.

I encounter it in an official capacity as many claimants hope 2 get a free bus pass with this benefit but unfortunately it's not on the qualifying criteria (at least not in Scotland) but thankfully PIP & DLA (at certain levels) amongst others r.

Take care everyone & especially Maz "kick butts"!!

Now wish me luck as I go 2 de-ice the car. Radio announcer has said it's an amber warning....brrrrrr

WB xx

Hi Annette

Always glad to help you, you don't normally need assistance, going by the eloquent style of your posts. 

ESA stands for Employment and Support Allowance. For me, it's sickness benefit. For others it's extra money for low income families. 

HMRC is Her Majesty's Revenue and Customs, covers VAT and the tax office. 

MLA is a member of our Northern Ireland Stormont government and stands fo Members of the Legislative Assembly. At the moment, they're hiding in the woodwork, working out how much more money they can steal from the taxpayer without actually doing anything. They are unable to agree on making laws for us, that's mainly the DUP, Democratic Unionist Party snd Sinn From. Most people I speak to are of the same view, throw them out and start afresh. So our parliament is in limbo. 

I think that covers everything I initialised. If I've missed anything, just shout, Annette. Had to put the comma in or we'd have people up and down the country shouting "Annette!" lol. 

Take care my friend

Tvman xx

Hi WB has probably answered the ESA question I would just add that there are 2 types ESA and Contribution Based ESA. When l was able to work full time my job was such that I was forever exposed to infections. After a few sepsis admissions my oncologist said I really needed to give the drugs a chance of working so that together with getting a bully as a manager made me take time off. 

When my pay went to half pay I was informed that I could get ESA contribution based  benefit  having paid all my contributions. I have to say it went through very quickly and after a few weeks I was then told I was being put in the support group. It was good money and well needed as I had dropped to half wage and my husband had to reduce his hours also as I was quite ill. 

I kept the DWP well informed when I got my work pension sending them all the details but they ignored it. Then after several months I had to pay them money back that they had paid it error and my ESA was reduced to £20 a week. No one ever mentioned that ESA contribution based is taxable so then I got a large back dated tax bill. Apparently the DWP had not informed HMRC. I am not sure if the calculation is right and if it includes what I paid back but when I feel better I can work it out. 

What gets me is the rudeness it was not my error I believed my tax was taken at source and I have never tried to hide anything or evade paying my tax. Then to receive one letter saying you owe almost £800 then a few days later saying you owe just £25  is another example of their incompetence not mine. I am now told the first letter is correct the second is a mistake.

Normally I am one of those people who just want debt paid and just do without but I am so annoyed that I am determined to pay it off gradually. If they ever get round to letting me now how to do it. I half expect to be told in April I have then overpaid. 

Never mind it is a worry but with what I am now facing re my health it is way down the pecking order. 

Hope Scotland has a better system and a more competent one. 

Hi Maz

On the subject of the ESA, when I applied, I was told a few months later that I had "chosen"  contribution based ESA and I was in the support group which is for those with a serious illness (I must remind my wife and son, but apparently they want life to be the same or something similar). Being in the support group means we get an extra £37 or thereabouts, As for the ESA, I don't remember which one I am in. It's the one where we don't get free dental work done or free-ish glasses. However when I have either of those two done I tell the staff that I am getting ESA and it goes through as free. 

DWP, that's Department for work and pensions, gave me no trouble either, after I enlisted the help of my MLA. According to the HMRC my self employed NI contributions (National Insurance), weren't fully paid up to date for the 6 month period when I received the diagnoses of bone marrow cancer and spinal stenosis which knocked me for 6. My friendly MLA argued successfully that my state of mind wasn't good and I simply forgot. In 30 years of being self employed they were paid in time apart from the last period. So all is still rosy in the garden.         

What would we do without acronyms? We must save millions in print!

If you want help Maz, CAB (citizens' advice bureau) staff are so helpful. 

Tvman xx