Why do people make things so difficult.

[conno61]

I've got a pip tribunal on 7th September. I have other serious conditions as well as ET. Upshot is I applied for pip in July 2017, missed out by 2 points and it's taken 8 months to get a tribunal hraring, pathetic I know. I phoned the haemotology nurses to ask for a letter that explains Et ,it's symptoms and outlook. After zero response I phoned again and was told yes that's fine we'll get that out to you. Today I received a voicemail from another harmony nurse specialist basically saying that I won't qualify for pip so no point in sending me one out ! When did nurses become benefits experts ?

[conno61]

Haemo nurse not Harmony 😂

[Helen1952 in reply to conno61]

Definitely not a Harmony nurse!!

Keep fighting xx

[john0084]

You have my sympathy, I'm sure you entitled to see you medical notes.

[JediReject]

Have you tried a website called Benefits and Work ? They have every aspect of applying for PIP and appeals etc covered by their comprehensive guides. You still have to complete the forms but it feels like you're supported . A GP letter also carries weight.

Your nurse specialist is out of order as they are not DWP decision makers and don't live in your shoes. I would bypass them or let them know you are instigating a complaint and ask them how you go about it. Even if you have no intention it might just result in that letter dropping in.

Applying for benefits is very stressful and sadly many folk who ought to be awarded are denied due to the complexity of the process at a time when you often can't think straight.

Keep fighting and good luck with your appeal.

Chris

[nodmeister in reply to JediReject]

Excellent site for ESA and PIP help.Print off stuff from MPNvoice and Blood Cancer U.K. and give them that if no luck any other way but don't forget you don't have good days. Every day is a bad day.

If you have the breathlessness issues with Hydroxy that'll go towards lack of mobility to walking the metres they give because you can't and need to keep stopping and resting to get your breath back.

Good luck with your appeal. Say you want a copy of the recording and afterwards phone up and say you would like a copy of the report because they don't always match.

[JediReject]

Meant to say it's £20 a year but money well spent I think.

[mhos61]

Hi Conno61,

To me, that seems rather unprofessional of that nurse. It’s certainly not her place to make that decision, the tribunal will do that!

Your application for PIP is obviously not just about your ET, which it appears is presumed by the haematology nurse, but also about your other serious comorbidities and how these interact and impact on your quality of life.

I do hope you’re well prepared for the tribunal. As Chris has already said a supporting letter from your GP will really help, or a letter from a carer, such as your wife detailing how you’re affected. Again, any relevant medical letters between Consultants and GP on all of your illnesses. Print off all medications and any side effects you suffer too. The more evidence the better.

Wishing you luck.

Mary

[Mycancerconcern1]

Hi Conno61. If you fail to get your PIP go through Macmillan support or Citizens Advice and they will sit down with you and help you to fill out your forms. There are times when your GP is better to get a letter from to describe your illness's. Even though most GP's know very little about ET they do have all your medical results in front of them were your Hematologist will only tell them about the ET they are treating you for. Just mention to the GP to explain and write down that ET is a rare blood cancer with no known cure which all doctors seem to forget to mention in there letters and all the possible symptoms caused by it as a lot of GP's do not realize this. Also take a copy of all your medication leaflets out of the boxes that you actually take and highlight the symptoms caused by each medication so your GP can see this and put these all in the letter. The more information you have from your GP the more chance you have of getting your Benefits.

[Wyebird]

Hi, contact Maz, maybe one of her booklets will help. Also how about printing off all the really bad cases you’ve read on this app.

Good luc. I don’t know your age but at 62 I retired 3 years before ET diagnosis, I know I couldn’t work now. I have Home help and still have to have days in bed because of fatigue. Also if I know I’m off out somewhere in the evening then I rest all day.

I wish you well

[lizzziep]

I qualified recently for PIP, it is mainly for my severe arthritis but the ET, the drugs and side effects are a contributing factor, there are a few sites on the internet that help with filling in the forms. I had someone from DWP come out to see me, she was very nice and asked all about the ET, she was a former nurse and had actually heard of it! Her report must have recommended I get the PIP. I gave permission for them to approach my doctor, he gave a supporting letter which was a big help.

Hope you can get it sorted.

Best wishes

Lizzie

[conno61 in reply to lizzziep]

Hi Lizzie, as I stated I applied last July, had the interview, I had to go to them, they were actually not very nice and had cameras watching you entering the building to see how you coped walking. It was an awful experience to say the least , not at all like yours. As I said I missed out by two points and was all for quitting the tawdry experience. I think that's why they make it so difficult. The Macmillan benefits advisor told me in no uncertain terms not to give up and so we are here 13months down the line at a court tribunal. I was rather taken aback by the nurse specialist response because I need all the evidence I can accumulate for my case. To be honest it's not only frustrating but it's knocked my confidence in going forward with this.

[Karen2006 in reply to conno61]

I know it may take a lot of effort and indeed energy to persue your claim but a huge percentage of people who have persevered have won the day. I would recommend taking each day or task as it comes and I found that treating it as a game of chess i.e. strategy really proved useful in helping me recognise small triumphs and to tackle any negative responses head on and to treat each day as a new opportunity to win through. As I said in my response to another posting, the obstacles are there to discourage you from continuing, but continue you must. You can obtain all the information you need regarding your Assessments or any other piece of information about you being held by anyone by using the Data Protection Act and making sure that the most basic of communication is written and sent Recorded Delivery. Information is key and indeed a very full file on your side of the table allows you to thwart any effort on their part to refute any of the circumstances you have included in your claim. Don't forget to emphasise the effort you have to make in order to achieve the same as anyone else i.e. getting to the Post Office. Do you have to take extra care, need accompanying or indeed have someone carry out a task for you that you are unable to do for yourself. The most simpliest of tasks, like changing a bed, putting washing into the machine etc. etc. Those are the accumulative tasks that everyone has to undertake but how they are undertaken is different for everyone. Also the wonderful internet, the library in most of our homes, can no make it incredibly, relatively easy to download a complete analysis of any condition or illness you may have and provide bullet pointed notes on what it entails either by way of symptoms, limitations enforced into every day life, pain levels, medication side effects etc. It also pays to provide anyone you see regarding your PIP with a complete pack of that information to be included into your file(s). It would also pay to have a record of to whom and where said information was passed over to i.e. date, location, name of officer, and time etc. I hope this proves useful to you and I wish you all the very best. Just remember that the only "Expert" on your life is you and don't ever assume that the person you are talking to has any knowledge either about you, your conditions, your limitations or your life beyond your name, address and appointment time. I find that I pretend that I am speaking to someone who doesn't speak the same language as myself and therefore I have to be really clear and concise with the information I give to them verbally and I always back it up with the paperwork.

[Karen2006]

Hi, I'm so sorry to hear about the difficulties you have been having getting your PIP sorted out. I did one for my daughter who has a myriad of very difficult to live with, long term, life limiting conditions. It only took my dealing with it full time hours, and becoming an expert in my own right on everything that she has to deal with on a daily basis. Despite her not living with me. I discovered a couple of golden rules which I hope you may find useful. I refused to talk to anyone on the telephone, I only communicated by letter ensuring that no denial of receipt could be made and avoiding the miscommunication of what I tried to explain by telephone. Once you realise that all the people you are dealing with are not experts on your life and that you need to become your own expert. I found that not listening to excuses as to why I could not receive an appropriate letter or copy of a report and putting in a formal request for such information and realising that all the information held by others is relatively easy to obtain once you begin to understand exactly what you can ask for. You can request a full copy of the Medical Assessment Paperwork and Report that was carried out, a full and complete copy of all computer and paperwork records held by them. It pays to request these every 28 days. It will amaze and surprise you as to just how much you can garner from doing this for approximately 4 months or more. After just 3 requests I had a complete undidacted copy of all the information upon which my daughter's claim was being judged upon. Most of it was absolute nonsense. Indeed, had I not gone with her to her Medical Assessment I would have been completely taken in by what was erroneously put into the report. I found out later that nothing you actually say is recorded during the interview. All the questions you are asked have just tick boxes next to them and whatever you say, the closest to what you say is ticked. Not what you have said. You also have the complete right not to undertake any action that they ask you to do if it may cause you pain and discomfort. One Medical Assessment Unit was found to deliberately in their paperwork confirming your appointment point out the nearest car park which was on an increasing gradient that was extremely difficult to walk or push or self propel oneself. Amongst the first questions was the one that "please explain how you got here today and if you came by Mobility vehicle where did you park?" It came to light because someone queried what was included in their Medical Assessment Report was the fact that "obviously this person had no difficulty with the car park and indeed had managed to walk into the building on time and on their own. Therefore, the conclusion was that the person was able to walk far further than stated in their PIP application and therefore did not qualify". Numerous others have been caught out by making the Medical Assessment based on their very best days rather than their very worst days. The Governments plan is to penalise the disabled and ill members of our society so that those people pay for all the follies of the banks and financial instutions that cost all of us very dear. You are your best advocate and I would very much recommend taking someone you trust with you to any meeting so that it is not only your word against theirs when you decide to either complain or query a decision. May I take this opportunity to say Good Luck at your Tribunal which isn't very many days away. I hope some of what I have typed here is of use to you.

[conno61 in reply to Karen2006]

Thanks Karen, much appreciated, thanks for taking the time to write such a long and informative response.

[Jonnymitts]

YNWA