I have just recieved the results of my appeal against the stopping of my incapacity benefit. I saw a doctor in August and based on the answers to a form they sent me, and her appraisal, Social Services decided to stop my Incapacity Benefit. I am currently being paid by an insurance company from work at a rate of 75% of my Salary less Incapacity Benefit. I didn't know for the 10 years that I paid into the scheme that I would have to claim IB, and what a hassle it would be. For many of the years that I paid in, when I was working part-time I'm not even sure it would have paid out anything.

Having refused my appeal, Social services have sent me copies of all the documentation of the case. I'm really cross about the report from the doctor I saw. When I saw her she said that she would write a report that said I was suffering from severe fatigue, and to review my case in six months. Although she did say my case should be reviewed in six months, she also said that I was sleeping well overnight, and the reason I was also sleeping during the day was due to habit, or boredom. This has really anoyed me. I sleep when I am unwell, I was concerned that I was sleeping so much after my treatment had finished, and as this is one of the major signs of cancer, I was also worried that it could be an indicator that I would have a recurrence. However I am gradually reducing my daytime sleep, as I am able to. How could she say it was habit to need to go to bed two hours before the rest of my family! I have had to come home when I was out (I went to the doctors, and wanted to pick up some shopping afterwards), because I was in danger oif falling asleep on my feet. The Radiotherapy and Chemotherapy I had left me really drained, and I needed to sleep to regain my strength. If I had gone back to work in August I would just have fallen asleep at my desk.

Anyway I'm really mad. But I'm also concerned that the current system doesn't really cater for people who have had the sort of treatment that we have had. The questions asked relate to your ability to stand up for 30 minutes, sit in a chair for an hour and walk up and down a flight of stairs. Now my job was not physically stressful, but I still drove for 30-45 minutes to work, spent 7.5 hours sitting at a desk, an hour having lunch, then drove for 30-45 minutes back home. The questions they asked, seemed to be relevant to someone working for only one hour a day. As I said earlier, I have been lucky that the majority of my income was protected, and as we have been spending less money on travel, going out, holidays etc this year, we have not ended up in financial difficulties. But has this been a problem for anyone else? Also have people been forced into going back to work long before they are really capable of it, because of financial considerations?

I have just noticed the time (12:21), and I have managed to get up, have breakfast, wash, shower, dress, put on my make-up and jewellery, load and unload the washing machine, then sit down at the PC to check my mail and this forum. On a normal work day, I should have done all of the above, and been in the car by 8:00 in the morning. I think I'm making real progress recently, but I'm only just now considering returning to work. A few months back I would have been ready for another sleep after all of that.

This message has been edited. Last edited by: Jenni,

Hi Jenni,

I Know exactly what you mean, I assume the Dr was your GP, If my GP is anything to go by they have very limited knowlegde regarding our types of cancer and what, how / why the effects are detrimental to our everyday lives.
One benefits advisor, advised that I would not be entitled to benefits as all my symptoms were merely post-operative and would go back to normal (including my inability to verbally communicate effectively).

One year on my body is still adjusting although I dont sleep during the day anymore it does take me twice as long to do EVERYTHING!! SO I understand and more often than not I go to bed at the same time as my two year old daughter 7.30 ish.

In my opinion the lack of knowledge about our type of cancer affects the ways forms are acessed. Although most of these organisations have in house medical advice our conditions are not the norm........ so instead of finding out double checking and clarifying information they disregard our entitlments because we do not tick their relevent boxes.
The form criteria is completely unfair and more needs to be done for people living with or facing the consequences of our less well known cancer.

Please keep appealing i am still waiting for my decision to come back (5 months!!!!).

I am at uni now which is a complete change but my time is more flexible unlike the strict routine of my previous employment days which were identical to yours but adding on a further 30mins to drop my daughter to nursery either side of travelling to central london

One stage at a time do what you feel you are capable off not what is expected friends were asking me what i do all day!!!!! and when are you going bk to work!!!!! 3 months after my radiotherapy 6 months after my op frustrating when medical professionals make assumptions.

Well in another couple of months you probably will get that time down to 10.00am but either way 12.21 is excellent for all you have been through in one year

Mel xx

Thanks Mel,

It doesn't seem right that with everything else we have to cope with there should be financial issues as well.

Congratulations on getting through your disease with a 2 year old daughter. It was a long time ago that my son was that age, but I seem to remember that for the 12 hours or so that they are awake, kids of that age are on the go all the time. That must have been really exhausting for you.

I hope the course at uni goes well, once again huge congratulations on getting into uni. My son is planning to go next year, and we are going through all the open days, ucas forms etc at the moment. It sounds as if you have made major changes to your lifestyle since having had the cancer.

Nobody really understands how draining the disease, and the treatment can be. I can't really blame them, I was fully expecting to go back to work in February, I thought I might need a few weeks in January to recouperate, but that was all I was expecting. I think friends and family are trying to encourage us to look forward, and don't realise how daunting that can be.

I'm hoping to start a rehabilitation process, and easing myself back to work in the next month or two, and I'm not sure that I will appeal, as I would only be trying to claim for four months of IB. Also I now look so well that nobody would believe how bad it still was a few months back.

However I have worked since I was 19, apart from a few years off when my son was a baby. During all that time I have paid NI and tax, and as both my husband and I work full time, we pay lots to the government. It's disappointing having paid in lots, that when I need something back it is denied for petty reasons. I think the government is tightening up on the payment of incapacity benefit recently, but I felt that I had good reason to claim it, and I'm annoyed that it has been denied to me. I feel that my GP and I are in the best position to decide when I'm fit to return to work, not a doctor who only saw me for a quarter of an hour.

I'm also really annoyed that she decided that my fatigue, and need to sleep during the day was due to habit, or boredom, as I said that I slept fine overnight. I've always slept a lot when I'm unwell, and it's my body's way of healing. As I am still healing I'm still sleeping lots.

Hi Jenni
Could I just say to you I can fully understand your anger at the decision, because I have been there!!
My incapacity benefit was stopped too because of the score I recieved during my 'medical' this consisted of a 'gp' sitting behind a lap top asking me stupid questions which did not relate to my illness (WHICH I KEPT TELLING HIM THROUGHOUT)I too had cronic fatigue. It wasn't the fact that I was 'acting ill' My main objective was to return to work, I just needed a bit longer to recover.
I appealed the decision and like you I was turned down.....but please take my advice here Jenni and take it to a tribunal. I did, I went to the citizen advice and had a representative with me, I also had 3 letters in my defence from my consultant, also the doctor in charge of my medication from the oncology department and from my GP (these were very angry letters). I didn't expect for one minute to win but I wanted to put my point across, these questions do not relate to our illness, and I had no intention on staying on benefit.
The meeting didn't take long at all, common sense prevailed, they could see I was ill. I won the tribunal and had my money backdated, but it shouldn't have come to that.We have enough to cope with.

PLEASE DON'T LEAVE IT...TAKE THEM ALL THE WAY

Good Luck

Tracey

Hello Jenni

THere's seem to be a problem with the 'benefits' people understanding the position of mouth cancer patients. I will raise this issue at next week's 'Britain against Cancer 2006' conference. This year’s conference will examine the issue of inequalities in cancer care; be they caused by ethnicity, disability, gender, age, the type of cancer, your postcode, access to private medical cover or the community you live in. The conference will provide the opportunity to share ideas and formulate policy proposals. I have been given a 10 minute slot to talk about mouth cancer patient needs in a lunchtime breakout session entitled “I’ve got what? Rarer and less talked about cancers”

You may find these past posts about Tracey's problems with getting incapacity benefit of interest. There is also more information at this link on Financial Help (UK].

I am with Tracey on this. Take your appeal to the Tribunal if it proves necessary, and take your story to the local paper too!

Best wishes
Vinod