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.

0

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!

 

COPD – WHEN THINGS GET OUT OF CONTROL

CpI13dpUIAALSON

Well, things really went pear-shaped for me these past few months. It has been like four months from hell! After a horrible sore throat at the beginning of July it went on to progress to a horrible chest infection towards the end of July and I ended up in the hospital for ten days. But this was not the end of my nightmare it was just the beginning. Huddersfield Royal Infirmary has merged with Halifax. Because of this reorganization, they have now lost their best and most experienced consultant. because I heard from the staff that the changes that were coming into the department she did not agree with and she was right. There is no longer any continuity of care you see a different chest doctor every day as they work on rota sharing the workload. This gets a bit annoying because you are having to explain everything from scratch every day to different specialists. In the end, I wrote a bulleted list on a piece of paper answers to all the questions that they usually ask one of their favorite being what had brought me into the hospital this time?

changes-comingMy Treatment Regime Was Changed!

Usually, when I have a flare up I go into hospital and my consultant prescribes IV antibiotics1834751917ce3b0e284a4d564f37683e--color-blue-splash-of-color and an aminophylline drip for the asthma part of my illness and perhaps a magnesium drip. Because I have brittle asthma my consultant used to treat the asthma first. I have also got aspergillus bronchitis so that does not help the situation. It has always been a long drawn out process which involved about 2 weeks in the hospital to open the airways back up. But this did not happen I had antibiotics in the form of tablets and carried on with the prednisolone which I had already been on for over a week and the drip for two days and then when it started to flare up again because they had taken it off too quickly I was put back on it again for another two days it was a right pantomime. They said I did not have an infection because the white blood cells were higher than they should be but that was because I had been on steroids and because II did not have a temperature and I wasn’t wheezy just tight it proves no infection. I told them that I never usually have a temperature as its normal for me to have a low temperature as I have an download (1)underactive thyroid and that 37 degrees is high for me. Dr. Graham my previous consultant was very happy that we had found a method for getting me up on my feet again. But, she was no longer there and the consultants dealing with me now decided that they were not going to treat my asthma any longer just the COPD. They sent me home after about 10 days very ill and with a DNR on my record, I was distraught. For those of you who don’t know a DNR stands for ‘Do Not Resuscitate’. I can tell you that did not go down very well with me it was the worst thing they could have done. I was very upsetting for my family too. Well it was like showing a red rag to a bull, I immediately got a frame for it and intend to hang it up on the kitchen wall. “No way was I going to let this get ME down” I thought, “I am going to get a second opinion about this”.

After a week of struggling on my own at home, I went back up to the hospital and theyCWef2VOWoAE6Nri sent me home a day later with palliative care and respiratory nurses saying there was nothing more they could do. I will remind you of one thing – I am NOT on oxygen, have NEVER been in ICU and have NEVER had any kind of help with my breathing during a crisis only the normal nebulizer, antibiotics and steroids. I will never forget that feeling of hopelessness that I felt at that time, it completely overwhelmed me and totally knocked the stuffing out of me for a while. It might have been easier if I had a partner to talk it over with but I do not so the feeling of being alone with all this did not help one little bit.

All the hard work I had put into living with this illness and surviving seemed at that14613648-Education-and-learn-concept-pixelated-words-knowledge-is-power-on-digital-screen-3d-render-Stock-Photo moment a complete waste of time. I felt as if they had written me off! How was I to stay motivated? At first, I must admit I almost gave up and then all my facebook friends who have this illness messaged me, rang me and one traveled a full hour when she was ill herself to visit me. It was their words reminding me of how far I had come that made me realize I could not give up ever. I started to use all the knowledge I had under my belt to get better.

During those weeks I was having visits at home from the respiratory nurses three times a week and really struggling to manage. I also had carers in on a morning and afternoon. And with their help and my knowledge after four weeks I started to pull up a bit. However, I am still annoyed with the way they treated me because I really suffered for much longer than I should have done normally. Sending me home faster was definitely not a good thing for me and the stress of their diagnosis did not help one little bit. When I think about going into hospital again I get panic attacks the experience was so bad. Doom and gloom is not good for anyone with a chronic illness while there is a smidgen of hope that is what you have to concentrate on. Just like these beautiful ladies in this video show, you should never give up and a positive attitude is everything! Shame these consultants do not realise this.

A couple of the respiratory nurses that had known me for some years did not agree with the way the consultants treated me either and one made her opinions known to them. All they seem bothered about was keeping people out of the hospital and doing that by any way available to them. They are concentrating on getting people home to leave beds free for other patients coming in but this is no good you must send people home well enough to cope on their own. Is this what our NHS is coming to?

I was losing faith in the system and panicking now and wondering how I could find a doctor who was on the same page as me.  And just when I was thinking there was no way forward one of my COPD friends told me of a contact she had for a consultant at another hospital who she was very familiar with. My friend asked if she could have a chat about what is going on with me on my behalf.  Of course, I was grateful for any advise I could get. She is called Rachael Moses and she is a very busy lady so I was so grateful for her help. Thank God for social media, I contacted her straight away.

edited_img_1544_0

NHS consultant physiotherapist Rachael Moses was chosen from thousands of entries as one of two finalists in ITV’s Good Morning Britain Hospital Health Star Awards.

I sent her an email with all the results of my recent breathing tests and the full story of what had happened and was elated when I received the reply that they did not agree with the DNA going on my file and that I should consult a specialist at Wythenshawe Hospital in Manchester. What a coincidence, I had already been in touch with Wythenshawe Hospital because Professor Denning at the hospital is at the top of his field in treating Aspergillus Bronchitis and I needed some advise. To read more on his involvement and treatments see –Aspergillus and Professor Denning.

Additionally as well as having that department, I found out through Rachael that they have also got Doctors and imagesConsultants who are at the very top of their field in treating COPD and brittle asthma. They are known for having one of the best respiratory departments in the UK and do a lot of research on the subject of brittle asthma and COPD. Why had I not known about them before. I went all the way down to London to see Dr. Kemp when this great hospital was only 30 miles from my front door and I can get transport to take me and bring me home. My GP has now referred me to their team and I really hope that now I will get a specialist who is rowing in the same direction as me! Because there is nothing worse when you are going in opposite directions. So what is our motto for this disease NEVER GIVE UP AND ALWAYS TRY TO STAY POSITIVE?

GlimmerOfHope.001

Is it Food Addiction or Simply a Case of Emotional Eating?

Is it Food Addiction or Simply a Case of Emotional Eating?

“If hunger is not the problem, food is not the answer”

Excerpted from What, Exactly, Is Emotional Eating? | A Black Girl’s Guide To Weight Loss

This is a real problem to a lot of people and I am not ashamed to say that I am one of them. I am addicted to carbs and it is taking one hell of a lot to get it under control, together with my emotional eating this can become a perfect storm, turning into a  high calorie, high carb, high sugar blow out! So what is happening when I have one of these blow outs, am I suffering from emotional eating or just an addiction to certain food types?

Food can become a way to cope with emotional matters, and the repetition of this coping mechanism can breed an addiction. By using food as a means to deal with anxiety, stress, grief, and the like, the body becomes conditioned to crave that process to feel relief.

People often associate pleasure with foods that contain fat, sugar and salt. As innocent as it may seem, this starts at a young age when candy and soda are given as a “treat” or “reward” for good behavior, grades or a celebration. Research studies have shown the reward centers of the brain to light up and release dopamine when pleasurable foods are consumed. Could this be that we’ve conditioned our bodies to react this way? The following is a great way to explain what is happening to us when we feel compelled to eat when not hungry, its from another blog by Erika, she feels that this is what compels us to believe that emotional eating is the answer.

Once upon a time, in a land not very far from your home… lived mankind. No fast cars, no shiny structures, no skyscrapers, nothing. Just man.. rock… and animals.

See, this worked for man because his only task was to hunt wildlife, and gather his kill for his family. That was his responsibility. His purpose was to bring the salt and fat from the animal to the family. Not work, not bills… just hunt. Because life was much simpler then, this was man’s sole source of stress.

One day, man could not hunt. Every time he threw his spear, he’d miss his prey. He just couldn’t catch SQUAT! His family was to go hungry and he just… he couldn’t take it. The stress started to build up inside of him.

Because stress about the inability to eat is the only source of stress for man, his body became used to the eventual chain of events. His body knows: Lots of stress = lack of food coming in. How did his body react? His body decided to hold on to what it had – by way of diminishing the amount of energy his body could exert all at one time, by way of making sure his body took a very long time to lose weight, by way of making sure it held onto every pound and fat cell it could. This bodily reaction would only further compel man to step up his hunting skills… why? Because he didn’t want to feel that way! He didn’t want his family to feel that way! He had to get his caveman hustle on! When man was finally able to tackle that antelope or whatever-what-have-you, the fats and salts in the meat were sooooo satisfying that they would cure man of the bodily reaction to stress.

Compare this to emotional eating. The body’s reaction doesn’t change no matter what variables you swap out. Regardless if the stress comes from traffic, bad work day, or family problems… the body’s reaction to stress has not evolved as fast as society has. Now, we can get food within ten minutes if we drive or own a microwave. So presuming our body believes that stress is caused by a “famine on the way,” then it’s going to trigger feelings to make you go hunt! Our bodies just don’t know how easy it is to get food just yet. It hasn’t caught up.

Excerpted from Telling A Tale of Stress and Emotional Eating | A Black Girl’s Guide To Weight Loss

Cllick the links below to read more –

 5 Steps to Take Control of Food Addiction | MyFitnessPal

What exactly is emotional eating

Drying WASHING indoors could ‘harm your health’ | Daily Mail Online

Aspergillosis

s-l300 (1)

For anyone with asthma, COPD or a weakened immune system this is worth reading its a great piece which also has a video on it too. Experts have found that clothes put on drying frames or draped over warm radiators raise moisture levels in our homes by up to 30 per cent, creating ideal breeding conditions for mould spores – and one in particular called aspergillus fumigatus, which can cause potentially fatal lung infections.

Drying Washing Indoors is Bad for Asthma and COPD – Great video on the page too.

Drying WASHING indoors could ‘harm your health’ | Daily Mail Online

 

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

Falling off the Precipice

download (1)

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.

e4b965254f7604c12177e5424898df7a

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?

images (1)

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

13312900_10156821659325018_5819768841227949631_n (1)

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?