Practical issues

Share experiences and advice on practical issues when living with cancer, such as money, work, benefits, travel insurance, transport, food and drink, organising support at home, or getting specialist equipment.

PIP ATOS Assessment at home

Graham_B
Posted by

I was diagnosed with bowel cancer in Sept 2014 and had surgery on 5/11/2014. I had a course of 8 cycles of chemotherapy (oxaliplatin & capecitabine) which eventually came to an end last August. I was awarded PIP at the enhanced rate for daily living but nothing for mobility. I also have a stoma and am booked to have a reversal operation on the 30th March. I was awarded PIP for 2 years but they wanted to review after 12 months. I know they are entitled to review it at any time they see fit. I still have peripheral neuropathy in my hands and feet and also still get tired, fatigued and also quite out of breath at times. Since my original award I now also have type 2 diabetes which may also contribute to the tiredness and neuropathy but also breathlessness. I have an ATOS assessor coming to my home a few days after my scheduled stoma reversal. I tried to provide as much medical evidence as possible. I also had 5 urinary tract infections and also some complications with my stoma and my urologist is convinced these are linked to my treatment. The last UTI was in December, just before Christmas, several months following the end of my chemotherapy. I was just wondering if anyone else has been through similar experiences with claiming PIP? My tumour was a Dukes C1 and following the chemo a CT scan and blood test show no signs of recurrence. Obviously, I am delighted about this and am cautiously optimistic. However, I know my body is still recovering and I know I still have a fair way to go before I feel my old self again. I hope clear test results don't mean the PIP will just be removed totally and automatically. I am not a wimp but I still feel unwell following the chemo. I still get tired and fatigued quickly and the whole experience of having cancer has made me depressed and anxious at times. I have also had to deal with erectile dysfunction as a result of my treatment which is embarrassing & is getting me down. I don't go to my oncologist or GP about everything either because I know they are so busy and cannot necessarily help. It will take time. Has anyone been through a similar experience? Any advice or tips would be appreciated. 

jujuju
Posted by

Hi Graham try posting your question here .

Best wishes

Julie

tingtong
Posted by

Hi, Graham

I'm going through the same with PIP, I was diagnosed with rectal cancer in January 2015 and had a course of 25  rounds of radiotherapy and chemotherapy (capecitabine), had an operation (a lower arterial resection)last August, (I was very lucky, the surgeon was able to do a rejoin immediately) then I had 8 rounds of chemotherapy(capecitebine and oxaliplatin)which I finished at the end of March. I was awarded PIP for 2 years the same as you, and I am currently being reviewed 12 months in,, just sent forms back and waiting for decision. I have just seen the oncologist and had a check up with the surgeon and they are both optimistic, waiting for a CT scan, so hopefully like you I will have good news. I am also worried that they will reverse the original decision and take away PIP, they turned me down the first time I applied last May, said I did not qualify,OMG HOW ILL DO YOU HAVE TO BE !!!!!!!, a Macmillan adviser helped me with the successful appeal. Like you I am also finding that I have no energy and struggling with fatigue, chemo brain, also I have lost my confidence due to after effects of the treatment and all the problems I have regarding the operation, (bowel incontinence) also feel anxious and have become very down, I have a way to go before I am back to full fitness. If they take away my PIP I will have no other option  than return to work, even though I am no fit state do so.  DONT THESE PEOPLE REALIZE THAT WE ARE ILL AND THAT WE HAVE GONE AND GOING THROUGH HELL AND THAT WE WISH WE WERE WELL ENOUGH NOT TO HAVE TO CLAIM!!!! 

I hope that everything goes well for you and that your recovery continues. Sorry not been much help. Take care and DONT LET THE BASTARDS GET YOU DOWN. X

Graham_B
Posted by

Thanks for your supportive words. I got the enhanced rate of PIP (daily living) for 2 years. It has now gone down to the standard rate & I had a fight to get that. Managed to scrape through with 8 points after lodging an appeal. I didn't actually have to go to a Tribunal as they reviewed their decision based on the evidence I provided. I am currently waiting to hear if they'll agree to extend it another 12 months so have my fingers crossed.

I still have peripheral neuropathy which will not get any better, problems with bowels & bladder functioning for which I still attend clinics for. I also still get hot flushes although these are less frequent. In my case it was well worth fighting on & I guess fighting cancer makes us tougher in some ways & more resolved not to give in & stand up for ourselves & what we are entitled to. Good luck with your treatment & stay strong.

tingtong
Posted by

Hi Graham

Pleased that you managed to get you PIP award, they turned me down and in the reconsideration, I had a right idiot assessing me, everything I said was disagreed with, in the letter it was "you said you are unable to go shopping for yourself, we say you can" and that's how it went down each section "you say you can't ####, we say you can", I explained to him that I was doubly incontinent due to the radiotherapy, chemotherapy and the operation, he awarded 2 points for that!!!! He then asked me to carry out excercises, (lifting my arms up, looking left then right) then he asked me to do squats!!!! I told him that that was a bad idea, because the changes were I would have an accident and reminded him of what I had said about the incontinents, in the letter he said that I had been rude and obstructive and had refused to carry out his request of the squats!!!! I was in and out of hospital with infections, and was so ill after all the treatments and the operation and then the 6 monthsof mop up chemotherapy, and I got 2 points for the assessment!!!!think everybody should video their assessment, there is far to many being turned down. Ok rant over.

Take care

Cath

nlb1976
Posted by

Hi

Sorry new to the community so please bare with me, in 2006 I was diagnosed with a benign petuatery tumour, everything was monitored closely for 5 years, then I started getting blurred vision, unfortunate the tumour had grown and in 2013 had it debunked, they could not remove it all because of its location, as a result I'm now blind in the right eye, experience debilitating headaches and lose the feeling in my right hand randomly, I have BID, Diverticulitis, Arthritis, bursitis of both knees, tendonopothy in my shoulders, Hysterectomy in 2007 and cannot seem to convince the DWP that I'm disabled, I'm starting to give up on my quest for independence, as any one please got any advice.