When Money Gets In The Way – My PIP Assessment Nightmare
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.
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!
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.
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.
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 then 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!
Just When You Think You Have Got It All Figured Out – You find you haven’t at all!
COPD is the most annoying illness especially when you start getting other things that exacerbate it. I was thinking the other day if all I had to cope with was the COPD then I would be laughing. Very few of us just have this one illness to contend with. Mine first started with Asthma which developed into COPD and this past year I have annoyingly developed Diabetes type 2 from overeating carbs whilst I stopped smoking seven years ago! Well, at least I am honest and will admit that my diet was not perfect but crikey what bad luck to get that as a reward for giving up on the cigs!
Could my Diabetes Type 2 be The Biggest Problem Here?
During the past year my COPD and Asthma have been out of control and I couldn’t understand why. Hence the fact that I have not written as regularly as I used to do on my blog. I was definitely feeling very off it, to say the least! I had some sputum samples tested and it was found that I had an Aspergillus fungal infection on my lungs. I was given some medication for this from a professor in Manchester who specialises in Aspergillus, but, there again I was unlucky, they found out I was allergic to the medication, I swelled up like ‘Michelin Man’. Unfortunately, I was taking it for some months before this was spotted. This is a link for the UK Aspergillus Centre.
My whole body swelled up and my heart rate was all over the place. They then decided that the medication they gave me was resistant to the type of fungal infection that I had so it was all a waste of time and suffering. It took me months to get back on my feet and get all the swelling down. It was so bad at its worst point water was leaking through my legs and ankles. Closely connected to the swelling of my feet and legs was my diabetes type 2. Once I had got back on track with my diet that completed the shedding of all the fluid which was really upsetting me. I couldn’t kneel on the floor and my breathing was so very bad. At one point they were thinking I was suffering from heart failure! The year leading up to January I was in the hospital several times with swelling and my heart rate and it was all due to side effects from the medication I had been taking and also most importantly not looking after my diabetes as well as I should have been. The solving of the situation was a bit like unravelling your Christmas lights every year a bit of a puzzle.
My Run-in with Diabetes Type Two – The final part of the puzzle
I was never aware that Diabetes Type Two could cause such a lot of problems. I had my yearly sugar blood test which is called a HbA1c and it was 77 which is quite high or higher than I would like it to be. I immediately started to read up about the subject and realised that this was not a condition to mess about with. I signed up to all the diabetes UK sites and read as much as possible about the subject. I had been used to dieting in the past but this was a completely different diet for me. Everything I had learnt in the past I had to throw out of the window. Living a low carb, low sugar life was going to be quite a challenge and a steep learning curve for me. And, I realised just how much I had relied on Carbs in the past. They had been my whole diet! I actually lived on Carbs alone no wonder my sugar levels were spiking. One web site which I find very useful is the Low Carb Program (this is a link for the site), you need to register with them it only takes a few minutes to complete and then you get loads of help via recipes and weekly targets. I also find that My Fitness Pal is very useful. I use this several times a day I put my food into it and it gives me a value for how much carbs and sugar are in the food immediately, I have changed the Carb and Sugar levels to suit my diet. Obviously, I put the food and amount in before I eat it to check it doesn’t go over the Carb and Sugar levels that I require for that meal. You find that on the diet you tend to eat a lot of protein and vedge. Fish is very good but I must admit I miss my potatoes and bread. Fruit can be difficult because it has quite a bit of sugar in but I manage to fit some in every day. My fluid retention has now gone and I don’t look like Michelin Man any longer, thank goodness and I am not thirsty constantly or have a dry mouth anymore so it is well worth sticking to and my breathing is also improved. It is too big a pay off to stray from the diet.
THE NEWCASTLE UNIVERSITY STUDY – To reverse diabetes type 2
At the moment a program is running on ITV called the Fast Fix – Diabetes. This involves eating just 800 calories a day from meal replacement shakes and soups. You also drink three litres of water a day.
The theory behind the diet, which is the brainchild of Roy Taylor, professor of medicine and metabolism at Newcastle University, is based on the fact that type 2 diabetes is often caused by fat clogging up the liver and pancreas, which are crucial in producing insulin and controlling blood sugar.
This is why weight gain is such a risk factor for the condition, particularly if that weight is carried around the belly and abdomen like mine! (probably due to the steroids I have been taking for the past few years). Some people seem to be disposed to accumulating fat in the liver and pancreas. When on a very low-calorie diet Professor Taylor’s studies have shown that it causes the body to go into starvation mode and burn fat stores for energy — and the fat around the organs seems to be targeted first.
This leads to the liver and pancreas becoming unclogged, and insulin and blood sugar levels returning to normal. I have been dieting now for 10 days but not on a constant low-calorie diet of only 800 calories a day. I will now concentrate on keeping my calorie intake down to 800 and let you all know how I get on. I won’t be able to use meal replacement shakes as they are too expensive so I will be doing the more economical way of cutting back carbs and sugar and keeping my calories below 800 a day using the My Fitness Pal App which counts your calories for you.
How do we carry on with this illness it can be terrible at times in those black times when you are in the middle of an exacerbation and you can hardly breathe, you cant walk, you cant eat and you can barely speak just remember not all days are as bad as this. It’s a bad breathing day or days, not a bad life. Love the songs from this lady who has breathing problems it is called Be Brave and that’s what we have to do!
There is no point in giving up with this illness!
SUMMER RESOLUTIONS –
STOP SMOKING!! MAKE IT YOUR SUMMER RESOLUTION. It is the one major beneficial thing that you can do for yourself. I have some posts on this and the following links will lead you to them and I hope they will help you to Quit like I have done.
FEATURED POSTS – SEE LEFT SIDE PANEL FOR OTHER POSTS
COPD – WHEN THINGS GET OUT OF CONTROL
How to Manage Your COPD Like a Respiratory Therapist – Part 1 and Part 2 this is a great piece by My COPD Team which is a social network for those living with COPD.
My trip to see the Wigan Warblers and the COPD Athlete – Includes reversing the downward spiral
MY PIP EXPERIENCE – A complete fiasco!
Lung Reduction Surgery, Valves, Coils and Further New Developments
The 10-Step Program – does it work? – GREAT BOOK
A Short Walk a Day Helps COPD Patients Stay Out of the Hospital
TVs Nadia Sawalha Highlights the Struggle COPD Sufferers Have Every Day
Keep fighting there is no other way with this illness. Don’t just sit back and think things will get better. The following is a link to a two-part post which I have edited from My COPD Team which gives you ideas how to do this. See – How to Manage Your COPD Like a Respiratory Therapist – Part 1 and Part 2.
NO MATTER HOW PAINFUL DO YOUR PULMONARY EXERCISES!!!
A bit of fun is always in order exercising to this song always cheers me up –
‘We Are Breathless, Not Hopeless’
WHAT MOTIVATES YOU ON A BAD DAY? – Some of my biggest motivators!
MUSIC – THIS IS SO GOOD FOR THE LUNGS
What keeps me going with this illness on my bad days when I am stuck in is MUSIC and my taste is very diverse. From the tacky to the classics. I discovered YouTube and all the free entertainment, just a click away. I have always loved singing even when I am told I can’t sing by my family (so cruel). Music has always been a big motivator for me, it has also been proven to be a great exercise for the lungs. Hey Google it, and see what you find! In the meantime sing along with one of my favorite songs below.
CHILDREN AND GRANDCHILDREN I AM SO THANKFUL TO HAVE THESE LITTLE PEOPLE IN MY LIFE!
My children and my Grandchildren are my greatest motivators. They enrich my life so very much you just can’t feel sorry for yourself when those little faces are about. Its awesome when you think you have created all these people.
She has really given me some perspective over this illness she has pulled me up and yes at times ground me down However if it hadn’t been for her perseverance I don’t think I would have been able to give up the Cigs and stick to my diet and exercise. She showed me I could do it and I couldn’t let her down now could I?