My PIP Assessment Nightmare

When Money Gets In The Way!

This is not the first time I have had to fight for my benefits and a decentish standard of living, let us face it nothing is as good as going to work, especially if you are losing a professional income.

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First, it was ESA (Employment and Support Allowance) which took ages to sort out and I lost over £600 in the process. Once sorted and after literally months of waiting, I thought that everything was ok and stable. AND then what did they do? They brought out PIP (Personal Independence Payment) to replace DLA (Disability Living Allowance). Why did they do this? The whole process of changing over paperwork, staff training etc must have cost a fortune and I know it cost a great deal in bloodshed and tears from the claimants. Was this worth it? I just feel it was the Government, as usual, wasting taxpayers money. All they had to do was tighten up an existing very good scheme.

My first experience with PIP and the assessment process was with my son and I have done a section about this you can read it here, my sons PIP assessment nightmare. This was quite a while ago and I felt with all my experience from my sons’ assessment and also the fact that they would have improved the process because of some big government reviews they had been part of, it would be a slam dunk experience. Was I right NO!your-benefits-are-changing

This experience has been made a much more stressful one than necessary. I received my assessment through the post and the same day an altered assessment for my ESA (two bad letters at once). Because they had stopped paying me for some unknown reason the personal care part of my PIP I also lost my Severe Disablement addition to my employment and support assessment. That counts for at least £110 a week cut in my income. A 55% wage cut in fact. I wonder if the government could manage on a 55% cut of next to nothing. So now I have to do a counter letter to them including as much evidence I can of my condition. It’s so blinking degrading this is something they do not seem to understand. The majority of people do not like going on about how ill they are it depresses you. I try to stay positive and upbeat and this does not help when it comes to being assessed so I am now in the process of letting them know how limited my life is with a 24% lung function. The only time I feel normal is sat down and that’s the honest truth, anything more than that and I am breathless and when I am ill, I am breathless just talking. I am also on paliative care and have a DNR set up. I am down for paliative oxygen assessment too. It’s not an easy life having COPD and I feel the government is trying to punish us for being ill. It smacks of the Nazis who thought ill people were a strain on the economy and not worth a life. 

I am now going to get on with my PIP mandatory reconsideration and will let you all know how this turns out. I will post as soon as I receive an answer and living on £51 a week will definitely be a challenge until they have completed the new assessment. Hope they won’t take too long.

PART TWO

Have now sent off my PIP mandatory reconsideration. I also sent a query through to my local MP to see if they could help and they said that the DWP is very busy at the moment and it could take a while. Well, whose fault is that! 

This PIP MR (mandatory reconsideration), took me all week to write. I also had to ask my GP for a letter which he had ready for me in a few days and he also printed out a letter from my consultant that he had received. He was very helpful and did not charge me a penny for the letter. It took me a full day to counter their decisions on 6 sections. I went through each one stating their reasoning and then mine. It was a nightmare to do and it just makes it worse thinking that I will have to go through this in 3 years time again! So much wasted time and money on their behalf as my illness is degenerative I am never going to get any better, its total madness.images

One of the main things that I wanted to mention this week was the ruling for claiming a higher rate daily care or the higher rate mobility component during the PIP assessment process. It seems that there is some confusion about coming off one benefit and going onto another. I have wanted to claim the higher rate DLA now for some months and thought that I would have my claim backdated if I was successful. At the moment I am just in receipt of the middle rate personal care component of DLA. I was under the impression that when my letter came through informing my change from DLA to PIP that if I received the higher rate allowance it would be backdated to when I first applied for my PIP which was March this year. I asked PIP about this when I rang to start the process for my mandatory reconsideration and they said that the claim is not backdated at all if you are successful it will be paid from the second week in September and that I was still classed as being on DLA until then. 

I had a good think about the situation and thought if I was still on DLA officially thendownload surely I could put in another claim for the high rate to cover me from March this year to September when my benefit changed to PIP. I immediately rang up DLA to request they start up a claim for the higher rate DLA for these lost months. The lady I spoke to was unbelievably unhelpful. She sounded like a bored secretary, in fact, I would not have been surprised if she had been reading a book while she was talking to me! She informed me that DLA is not doing any further assessments at all and haven’t been doing for some time. So I asked her what was I supposed to do she said that I have a few weeks with my old amount of DLA and that should give me a few weeks to adjust to a lower amount of money. She made me feel that they were doing me a great favour by letting me keep my middle rate care for a further 4 weeks. I could have flipped at that point but I was just so shocked at her complete lack of interest in her job I was left speechless, unbelievable!

 

Falling off the precipice – and my appointment at the Royal Brompton

Falling off the Precipice

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Anyone with stage 4 COPD will remember the time that they seemed to be  walking around alright, just slightly out of breath on exertion, being able to shop, clean up, taking a shower or bath was a piece of cake and although just a bit more tired than you used to be things weren’t too bad. An exacerbation at this time only involved a few days on antibiotics and no visit to the A&E. Then, suddenly this terrible thing happened and you could no longer walk about as freely as you did or for a matter of fact do anything you were once able to do. It feels like at this time the disease has come around given you a good slap in the face shouting ‘I’m here, this is it now you can’t ignore me any more and I am not going away’! At this point in the disease patients leave work, stop doing many of the things that they used to do and physically start to give in to the disease. Dr Kemp explained this to me last week nicely he said, ‘you keep compensating, compensating, compensating and compensating until the point comes that you can no longer compensate any further’,  I think of this as falling off the precipice.

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At this point because you have stopped working, socialising, popping to your local shop and doing all the things you liked and enjoyed doing before you become so unconditioned this cycle continues until you are barely doing anything. It can become so bad that some people actually need oxygen to breathe on exercise. This new breathlessness can become very debilitating and you can also gain a lot of weight too; perhaps you have given up smoking and with the constant courses of steroids the weight has got out of control which also complicates the situation further. It can feel as if every day you have your back against the wall and it can and does in many cases lead to depression. You can feel so alone because no one really understands what you are going through. Your family may say, come on go on a diet and lose weight and get to the gym. Not very helpful!  So, the first thing on your list to claw back some of your fitness would be obviously to lose weight. I have mentioned this many times in a variety of my posts and you can find plenty of them in the archives I will put a link to a few at the end of this post. I know it is easier said than done because I am in that predicament right now!

SO WHAT CAN YOU DO ABOUT IT?

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Starting to lose weight and get into some kind of exercise routine is very hard when you find breathing difficult. I often think how come I managed to stop smoking, whichsnails required loads of will power but this weight loss thing seems to be slipping out of my grasp all the time?  Before I can take up a really good exercise program, I would like to get off  at least half of my excess weight. But, you still need to incorporate some safe exercise whilst you are losing this weight and I have contacted my local pulmonary rehab nurses and will be starting with them as soon as possible. I know it is going to be a slow process climbing back up this precipice and I will need all the help that I can get. I am aware also though that it will be absolutely worth it!

 

My Appointment at the Royal Brompton

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It was a long journey, and the traffic was unbelievable but we arrived at the Royal Brompton at time after an overnight stay in a Travelodge which was very pleasant. Parking is terrible in London, my daughter managed to find a disabled spot and then catch me up. I had a CT scan and loads of breathing tests, one of the tests was done in an airtight cube which was very claustrophobic for me. I am still unsure what that test proved I am still researching it. It took two hours to do all the tests and I am hoping to get a copy of all of them so I can have them assessed at my own leisure. The outcome was that I am not suitable for valves in the part of my lung which is the worst! How did I feel about it I was shell shocked for 2 days but am coming around now. It is all due to collateral ventilation, I have previously written a piece about this and have included the link. I didnt think that I would have it but unfortunately I have so that is something I have to accept. They can however operate if I get all this weight off and do my pulmonary rehab course. I have to get fitter. They can then cut off the top of the offending lung and that should help, there was some talk of perhaps having a valve or two at the bottom of my lungs but the main issue was my being fit enough for an operation. So, I have to get this weight off and step up the exercise or I am not going to be able to benefit from any kind of intervention to improve my life.

MY DIET NIGHTMARE – But I’m doing it, well sort of!!

The 10-Step Programe – does it work?

WHEN ONE DOOR CLOSES – Could a better one open?

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dalai-lama-stroke-luck-wonderful-4f7hMY DAD was always one who had a saying for everything, be it good or bad, but mostly when negative things were whizzing around in your life. A couple of his favourites were  ‘nothing worth having comes easy’ and when you were expecting something good to be coming your way, ‘don’t count your chickens before they hatch’! My Dad was the eternal philosopher, verging on the pessimist, who had been brought up in the war and had been subjected to a very hard life. His father had been a coal man and was so soft with his customers, collecting payments, that he ended up going out of business. My Dad was one of four boys and his father ruled the house with a rather large and well used rod of iron. His father had suffered some injury to his hip and walked with a limp, which was quite painful at times and this caused him to have a very bad temper. My Dad was therefore quite strict with me and he often said to me, when I felt the task in front of me was too huge and almost impossible to achieve, ‘there is no such word as can’t’. Other favorites he would bestow on me when I was walking around the house with a long face, after those chickens hadn’t hatched after all were, ‘when one door closes, another one opens’ or ‘everything happens for a reason’ and ‘every cloud has a silver lining’. I must admit that as a teenager these sayings did not really help me a lot. And, looking back to when my children were teenagers, I don’t think they would have helped them much either. I would have sucessfully wound them up as they say nowadays.

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My Dad is dead now and he died before I got the diagnosis of COPD/Emphysema/Chronic Asthma and I was sat wondering today what saying my dad would have fixed to this illogical illness and my life now. He was a great fan of Star Trek and would have associated my fate with that of Leonard Nimoy I am sure of that. I am sure also he would have thought of something, two favourites come to mind, ‘you’re never given more than you can manage’ and ‘there’s always someone worse off than you’. I certainly do not feel like that when I am in the midst of one of those horrible exacerbations that a lot of you are familiar with, maybe some of you have heard about and some of you perhaps have seen a family member or close friend struggle with. It’s not a very pleasant experience feeling like you are suffocating to death and there is very little that can be done, except taking antibiotics and/or steroids, its just a waiting game really, waiting for the symptoms to subside. It’s annoying really because they come on so suddenly and yet seem to take forever to go, another saying comes to mind, ‘patience is a virtue that very few possess’ and ‘you have to take the rough with the smooth’. Oh yes, he had a saying for everything, my Dad!

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Today I have been in an excitable and then reflective mood because I have received my appointment for my consultation at the Royal Brompton Hospital with Dr Samuel Kemp. They are at the top of the tree in alternative ways to help people with COPD and the most experienced in the UK in using the endobronchial valves. It’s a long way to go at 190 miles away but if they can help it will definitely be worth it. How life can change it was only a few weeks ago I was sat crying feeling hopeless because the consultant at Jimmy’s wasn’t on the same page as me. He wanted me to get worse before he helped, they were probably running out of funds!  Another great saying my Dad would have definitely used tonight and that would be ‘when one door closes another one opens’ , yes Dad, I can still hear you!

I have learnt a lot of things during my journey up to today and that is your health is yourRely-Quotes-Achieve-success-on-your-own-If-you-want-success-then-dont-rely-on-other-people-to-do-what-you-can-do responsibility it is up to you to question and find alternative paths to go down.Well what is that saying ‘if you want something doing do it yourself’ and I definitely wouldn’t be where I am today if it hadn’t been for the wise teachings of my Dad giving me the ability to stand on my own two feet and question everything. I am now trying to be optimistic that these doctors will be able to help remove the trapped air from my lungs so that I can breath better than I am doing at the moment, I will then have a better quality of life, I hope!

21591cb3bf11c15a1b8bd340fb8ea44fHowever. my 27 year old daughter has been throwing about the sayings these past weeks. Because, she said, I don’t want you to get disappointed if you can’t have the valves done. HELP! she’s turning into her Grandad!! But, I suppose that’s not a bad thing, he was a wonderful Father even though he was the worst pessimist going.

Lets give a thought to the people in our life that have done so much for us, our parents, family and friends –

For more on this story see Falling off the precipice – and my appointment at the Royal Brompton

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Endobronchial Valves – Links and Things

I feel like I’m like a bird that has had its wings clipped, being held up at every turn! It can be very frustrating.

I have only been writing this blog now for 7 months but in that time I have learnt loads and passed this information on to my readers as often as possible. One thing that I haveimg_6765 been asked about more than anything by people from the US and UK are about the endobronchial valves. I have done a number of posts on them so I felt they deserved a chapter of their own so I will be putting all the links on this post together for them. My road to having these valves fitted has not been an easy one and in the post My 2nd Appointment to Jimmy’s  you will see why. You have to jump through a lot of hoops to finally get there and also my opinion on where and who they would be fitted by has also been under a lot of change. Hey, this is an important operation, if I am to be put under general anesthetic and have my lungs tampered with, I want the best tamperer!

THOSE HOOPS AND HURDLES!

One of the first hoops you have to get through is all the tests and because I have the worst luck in the world at always having appointments when I am suffering from a bad images (4)day, this has been a real pain to say the least. The first test I had was the full lung function test and it took quite a long time and because I was in the middle of an exacerbation this was not very pleasant but I was determined to finish it, it’s one step nearer!  I was so exhausted after the test for the first time ever, I had to get a porter to push me back to the car. Then you must have a CT Scan that is easy even if you are under par. However, since I have started exercising I am no longer having these problems, it has been hard trying to fit exercise in between flare ups during winter but it’s just a matter of how determined you are to feel a bit less breathless in the long-term.

After all these results were through, I had to wait to see my specialist at Huddersfield more time wasted! When I had chatted to her about the procedure and she asked me if I was sure that I wanted it done as I could live for years like this and I wasn’t going to die. I said, ‘exactly, this is why I want it done I don’t want to live like this for years!’. She then referred  me to Leeds, Jimmy’s in fact and my first appointment there was very good. I saw a young thoracic surgeon who was very hopeful of a good outcome and booked me in for a nuclear scan. Details of this can be read up in another section called My Appointment at Jimmy’s for Nuclear Scan . It seems that if there are any tears in between the lobes of your lungs, then it’s difficult to do the operation. A nuclear scan shows them this apparently. Its called  ‘collateral ventilation’ and there is a post about this in the link Collateral Ventilation Explained Simply!!

While this was all going on, I was waiting for my referral for the other hurdle that had to be endured before I could have the operation done and that was the Pulmonary Rehab Course. Actually, I was quite looking forward to completing this course. I had tried twice in the past and only got through the first month or so because I caught and infection and did not want to give it to everyone else so I carried on doing a bit at home. I did a full course at our local hospice but it wasn’t much in the way of exercises. It was more chat, tea and coffee and cake and education about the disease which ended with a living will lesson, which didn’t go down with me very well at all, I felt like walking out! I am definitely not ready for that yet. Anyway, I did try to start the Pulmonary Rehab Course but when I went for my assessment true to me I was having another flare up and she wouldn’t continue with the 6 min walk because my stats had dropped dramatically from walking about 6 foot to the corridor. She asked me to ring her when I had recovered.

THERE IS ALWAYS LIGHT AT THE END OF THE TUNNEL!

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I can promise you that it is not an easy road trying to improve your breathing and your situation when you have COPD. From what I have been able to discover the first person in the UK to have the valves fitted was in 2012, so it’s still early days. There are other methods also such as coils, surgery etc.  It is costing the NHS millions in support treatments at the moment and palliative care and the numbers of lung patients are rising, add-on to that the number of people with heart disease as it’s a crossover, if you get my meaning; it is costing a mint. Therefore, I feel a lot more research will be done during the next 10 years, they might even find a cure. you never know. Anyway after a terrible time at my last appointment at Jimmy’s, I actually had some good news and you can read about it in the following post NEVER LOSE FAITH – It must be Karma! and Amen to that!

Below are all the links about the valves –

NOT AGAIN – When Your Having A Bad Day – a bad air day?

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I decided to write this post after I started experiencing a worsening of my symptoms for no apparent reason on Friday night; driving my car to the chip shop. I knew instinctively that a bad day was on the way! Anyone who has stage three or four COPD will be familiar with these days. You feel like there is just not enough air to go round and everything takes so much more effort and it’s exhausting.

Like many people, when I was first diagnosed with COPD it was already quite severe and these days were very frequent and puzzling to me. Back then I used to get many more bad days than good days. Since I have adjusted my life a bit I do not have so many but when I do it always annoys and frustrates me. I run through all the reasons in my head why this day has come on me, such as, am Idownload (1) starting with a virus, have I eaten, drank something too sugary, is the air pressure low, that can cause poor oxygen in the atmosphere or have I been in contact with any allergens, maybe I have done too much. The answer isn’t always obvious sometimes there is no reason and any plans I have made for a shopping trip, visiting friends etc has to be put on hold. More frustrating, is my immediate family don’t seem to understand this anomaly at all. I’m sure they think I am malingering at times – you know, as if I really enjoy those days not being able to breath? They make comments like you are always breathless what’s the difference or your always ill as if it’s just another day! Then I try to explain yes, but its the degree of breathlessness! It is almost impossible to explain it.

So what do I do about it? Well, I find a lot of patience comes in handy especially if this daydownload (2) or days, I forgot to mention it can last for a couple of days, falls on a cleaning day or a shopping day or a day I had plans or especially if someone else is relying on me, (that can be tricky). Firstly, I hunt out my emergency antibiotics and steroids and try to decide if they will be needed. I take my peak flow and measure my oxygen levels, am I wheezing more? This usually tells me if steroids are needed and if I start coughing up gunk then there may be an infection on the way so I add on the antibiotics. If it is an infection, then it will turn into as full blown exacerbation and won’t be gone in a day or two. But if as often is the case it’s nothing like that then I will get my nebuliser out and  make myself comfortable on the settee and put 110_E2BFposter_zcatch up TV on and have a nice cup of tea (thats if I am well enough to make one). This is where exercising has really come to benefit me. These mini flare ups are not as bad when they come and I am able to get my food and drinks. Whereas in the past pre exercise me, well, I went for hours without even having a cup of tea and these mini flare ups could go on for longer and the chance of them developing into an infection were higher. Keeping fit and eating nutritious food is really important to keep in control of your symptoms. Below is a video where a respiratory nurse explains about keeping a journal helps.