Oesophageal cancer and Personal Independence Payments (P.I.P.)

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Good day and very best wishes to all in the group.;

I'm seeking advice based on anyone's comparable experience of dealing with the Department of Work and Pensions, and success in gaining P.I.P. payments.

I was diagnosed with oesophageal cancer in 2011 and, following participation in a chemotherapy trial had four operations in 2012 which resulted in the total removal of both my stomach and oesophagus.

Since then, on a daily basis, I've lived with several bouts of diarrhoea, and regularly have dumping syndrome.  The issues that this creates regarding mobility and daily living is significant but, at present, isn't considered by D.W.P. as sufficient to warrant additional financial assistance, although I've not worked since my operations, and been on Employment and Support Allowance (Support Group) for over ten years.

I'm currently asking for the D.W.P. decision to be reviewed via independent tribunal, and I'm trying to gain an idea of other people's success, or lack of it, regarding claims for P.I.P.

Very many thanks for any comments and/or completion of poll.

Best wishes

Paul

  • Hi Paul

    I wonder whether it would be worth giving the Support Line a call tomorrow and asking to speak with one of the advisors.

    I had a different type of cancer to you but when I was diagnosed I contacted Macmillan and spoke with an advisor who was able to look at my personal financial circumstances and talked me through what help I could get and how to claim it. One of the things I was told about was PIP and we spoke about the paperwork and how to fill it out.  I did this and heard nothing for a couple of months. Then I had a phone call from the PIP line and they asked a few clarifying questions about my cancer, my treatments etc. I had a text 2 days later to say I qualified for it and it was back dated.

    For me it was about putting considerable details on the forms about how the condition/treatments affected my ability to do things. I wonder if the advisors would be able to suggest ways in which to support your appeal. 

    My cancer was endometrial. I had chemotherapy and pelvic radiotherapy. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you very much for taking the time to get in touch Jane, and especially for the advice, which I'll follow-up tomorrow.

    I'm really glad that at least someone has been accepted for PIP.

    Again, many thanks for your kindness.

    Best wishes

    Paul 

  • The Macmillan advisor was really helpful.

    For me it was about putting a huge amount of specific detail on how the condition affected me, side effects from the medication, side effects from the treatment. Doctors letters. Photographs of prescription medication. There is a 50% rule as well so if you can do things sometimes, and your condition fluctuates there is something about being able to do it repeatedly and safely. But the advisor can tell you the most up to date rules. 

    The DWP person who called to ask for clarification was actually really sympathetic. 

    It was hard to fill out the forms as you are basically putting all the things that you can not do, that before you could, so its tough to accept and write out your limitations. I wish there was an easier way of doing it as it is not something you want to be doing when you are unwell. I was having chemo at the time.

    Good Luck

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Many thanks Jane

    I've tried to explain to them, and even asked them to imagine how they would handle the descriptors if they had diarrhoea for say a week solid.  Then I've asked them to consider that in the terms of not one week, but every day since 2012.  So far it's not been successful, but I'm hoping that the tribunal will be more open to trying to put themselves in my place.  I have acknowledged to the tribunal that I understand how difficult it must be for the assessors.  Even having lived through it, the fact that this is a daily issue that I face, and will face until whenever, seems like something that you would only see in a film.

    Best wishes

    Paul 

  • Hi Paul 

    I’m sorry you’ve had such a battle on top of what you’re coping with every day. Unfortunately it’s not uncommon and the system is far from perfect. As Jane said, it is hard focusing on the negative stuff and what you can’t do but it’s necessary to really spell out the impact. You can check out on line the points system allocated for each question and the threshold you need to reach to get PIP and when you’re filling out the details, always think about the worst day and describe that not the best. The notes section at the end can be used to describe a ‘typical worst day’, like a diary. I’m sure the support line advisors can help. 
    keep us posted

    Jane

  • With the diarrhoea- I would be thinking something like;

    Difficulty in managing continence, having to plan where the nearest toilet is when going out, difficulty with frequent and urgent bowel movements. Needing to prepare and take changes of clothes. Anxiety about going out. Mood/mental health being affected by a long term condition. Soreness of skin in the area. Needing to take regular medication to be able to leave home, side effects of that medication. Needing to adjust diet and the affects of that. Eg; not wanting to eat before going out in case of accidents. Weakness/dizziness etc from not managing to eat a normal diet. Needing someone with you? when going out for support- Am just thinking along the lines of potential dehydration and physical effects from the diarrhoea.

    Prompting to eat, manage diet from another person to reduce symptoms. Constant diarrhoea putting you off eating, can't be bothered with it- need encouragement. 

    Need someone with you when driving for safety- in case feeling weak, light headed, urgent need for toilet. Difficulty in managing public transport due to urgency and frequency, exabberated by anxiety- if you need the toilet and can't get to one. 

    With the dumping syndrome- difficulty in managing and timing meals to balance getting nutrition with avoiding symptoms to be able to go out. Nausea- putting you off eating- weakness. Can lead to vomiting - social aspect/going out. Encouragement/prompting to engage with others when feeling nauseous/vomiting, effects of low blood sugar- tiredness, wobbliness, how it effects your digestion. Explain food moves too quickly through the digestive system and this means nutrients aren't always absorbed. 

    Effects on mood, needing encouragement/support to manage food, go out. 

    Needing someone near by when showering- in case of dizziness due to digestion. Support with preparing food, cooking etc due to potential weakness which could cause an accident.

    Painful cramps after eating/with diarrhoea - needing to sit at times to prepare food, get dressed, load the washing machine, use a kettle safely, use a cooker safely

    Support with medication- someone collecting it, prompting/encouragement to take it.

    These are just ideas as I don't know exactly how your condition affects you daily but this is how I would be setting it out- so rather than just saying that you have daily diarrhoea- you are saying that the physical and mental effects of this mean that when you try to do X it effects you like Y and you can not do Z (without support)

    Hope this helps- I am not a trained advisor but hopefully this may help a bit. Do still give the Support Line a call though and they will know the up to date info.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane, and many thanks again for your help.
    I've just used the online form to contact the support line, so hope to hear back from them within a couple of days.
    I will definitely use some of the points that you've mentioned, as they put things much better than the way that I did, though I do feel it to be a shame that DWP insist on so much negativity from people with physical disabilities such as ours.

    I've explained to DWP that I'm able to drive, but only within an 8 mile radius of my home (normal distance is around two mile radius), but only if I don't eat for a couple of hours or more before going out.  Your point about public transport is great, as I think it's worth adding that there's no way that I could use it, due to the anxiety of accidents, even if I've not eaten.

    I've told them that I can do a couple of batch cooks per week to help with my little and often eating regime, and do a little bit of washing and ironing, with breaks, but that obviously this is affected by the reult of my eating.  I have to do some things, as my wife was forced to work in order to support our family, including our two 15 year-old boys.

    I really do struggle to maximise the negative points that PIP requires, as I've only survived, since my operations, by concentrating on the positives of being alive and seeing my boys grow up.

    I'll wait to hear from the support line but, in the meantime, I'm going to type-up a new set of headlines for the tribunal, based on many of the points you've raised.

    Many thanks again

    Paul 

  • Hi Paul

    I am the same with the emphasizing the negative points and have tried to remain positive throughout my cancer and treatments. I just think there has to be a better system for it and the majority of people who undergo the same treatments for the same cancer are going to have similar side effects so I think they have to somehow get the diagnosis and treatment summary from the doctor and then a shorted form perhaps on the degrees in which it affects you. I got quite down when I filled mine out and felt like I was scrounging for support (before cancer I worked 40 hours a week. Seeing the effects in black and white was hard. The guy that phoned me from DWP was really understanding but he said that because I had put so much detail on the forms it was just a few questions to clarify. He actually said I am sorry that you are going through it. 

    For yours as well I would add in fatigue as well. As fatigue can affect everything you do and the motivation to do it. Then you need "prompting/encouragement" and that is something they may ask you about. Also if you have any other medical conditions other than the cancer related- put those down as well- so its like I am asthmatic and its normally well controlled but due to cancer treatments- I had more breathlessness on exertion, disturbed sleep and then had to use a steroid inhaler to reduce inflammation. This then was affected during chemo when I was more prone to infections, so limited social contact, effect on mood etc. 

    From what I remember there was also a part that mentioned planning a route or similar- you could put about the limited driving, the access to toilets, the planning ahead if you go somewhere new- finding out in advance where toilet/ washing facilities are. And that you are not able to go somewhere without this advance planning. With public transport- the jolting, stopping and starting and the anxiety about urgency of bowel movements can bring on symptoms of pain and sudden need for toilet. If you did have an accident you could have to get off bus etc, no access to water, safety etc. You can also put that your condition can be unpredictable and that makes it hard to plan anything. 

    I got points on managing medication by giving specific examples; My son had to go to the chemist to collect medication as I had to avoid infection. I felt too fatigued to cope with going to the chemist. I found it hard to stand and wait in the queue. Socially I felt shaky due to changes in appearance due to chemo. Needed encouragement to go out and someone with me. If someone wasn't available -I would avoid it etc etc. Side effects of medication would make me weak, dizzy, forgetful, fuzzy headed. Could forget and run out. I even gave examples where on one occasion I picked up 5 anti nausea tablets instead of 5 steroid tablets and nearly took them. 

    Managing finances; could mention the anxiety, focussing on the physical limitations of the constant tummy troubles mean that you can over look bills etc, apathy towards other things, wife has to support with banking/budgeting. Focussing on the diarrhoea and diet etc means other things over looked.

    I am sorry that you are having to deal with this and I hope that you can get this sorted as soon as possible. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Many thanks again Jane

    Support line has been brilliant and got back to me already.  They've suggested that I contact DIAL for their possible help and advice.

    I think that when I put another update to my tribunal appeal, using many of your points, I'll confirm that I've had the assistance of Macmillan, and potentially DIAL, hopefully that might be a plus for the people reviewing the appeal, or maybe give DWP a reason to reconsider before 18th February, by which time they are supposed to respond to myappeal.

    I'll let you know how things develop.

    Best wishes

    Paul 

  • Finger's crossed for you and yes do let us know how you get on

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm