Wednesday, 11 July 2012

Meetings and bank accounts & charity gigs!

So I have been busy meeting with people and putting the wheels in motion for Thrombosis Support.

I am very excited to announce that the Thrombosis Support Bank Account is nearly up and running, just need the ID of the signatory's approved and then we are good to go- I have already raised nearly £200 for Thrombosis Support which is amazing and soon once we are all registered with HMRC I will have our Just Giving page up and running and then anyone can fundraise!

The £200 already raised is going to go towards setting up the website, the forum and the start of the support groups.

Thrombosis Support is here to support and help those affected by Thrombosis be it themselves or a loved one so I am very keen to get input from you about what you want Thrombosis Support to be.

I will be looking for people to be trustees and to be involved in Thrombosis Support so please contact me via our facebook group or leave a comment on the blog if you want to be involved.

I had a very useful meeting with Allan Pimentel a Psychotherapist and Deputy Director at CCPE about setting up Support Groups, he gave me lots of information about the effectiveness of support groups and how to format them etc. Next stop is meeting with the local hospitals and I am in the process of creating a questionnaire that I want to be readily available for patients at their anti-coag clinic regarding after care and again trying to find out what those affected by thrombosis need and want in the way of support.  I know I felt very alienated when I first was diagnosed and needed support and guidance.

Next on the agenda is a Charity Gig, performing is my first love and I am blessed to know some very talented people, so watch this space for info regarding this.

Help me, help you, help others, help themselves

DWP appeal......done!

So it has been a busy couple of weeks with some very positive outcomes and lots of things happening.

As I have vented a little previously since having a thrombosis, I have really struggled to get any support from the Department of Work and Pensions.  In January of this year I began to try to go back to work, I love working, I am a workaholic and rarely have just one job, so not being able to work due to the DVT & Pulmonary Embolisms was killing me. I live with Post Thrombotic Syndrome and while I have to be careful and I do have limited capability I will not let it stop me from working and getting on with me life. Anyway January this year I started back at work, in the second week I ended up back in hospital- I tried to do two 8 hour days at a desk, leg slightly elevated but it was to static, my leg was so swollen and painful it took two days for the swelling to go down.  I had tests in the hospital as they suspected another DVT, but thankfully it was just swelling due to PTS. I reduced my hours and kept trying.  In February the DWP requested I go for a ATOS work assessment, to assess my capability for work and my eligibility for Employment Support Allowance. Since my surgery and subsequent DVT, PE's and now PTS I had received no help , no support. Prior to this I worked I paid tax and national insurance, INSURANCE, which I thought was for when due to no fault of your own you couldn't work full time.  The assessment was a joke, I was told I did not have limited capability for work and was entitled to nothing, did they not know me? If I could work full-time I would, I was really trying to get my life back on track and just wanted some support, some help, not only where they not helping me, but they didn't believe me- what did they want, for me to stand there and then they could watch my leg change colour and swell up!?

And so began the fight, the letters to the DWP appealing, letters and meetings with my GP, my physio, my employer, my consultant- I had to pay for letters that provided evidence of my condition, even though I have a medical certificate that states I can work only part-time and with limitations. In April I increased my hours and again in June. According to the DWP you are entitled to Employment Support Allowance if you have limited capability for work due to disability or illness and can work up to 16 permitted hours. As of June, I am now working more than the 16 hours permitted hours. Frankly I think this system stinks, when you are gradually trying to get back to work you can't go from 16 hours to full-time, I think it should work on a tiered scale, work up to 16 hours get x amount up to 20 get x amount up to 30 x amount and then above nothing or something like that- but it doesn't.

Along the way I have kept the DWP informed of my condition, of my working hours and have asked on numerous occasions if there was any other help I was entitled to, or could apply for, I got no information.  My case was going to tribunal. I have been struggling but getting by, on so many occasions I thought of giving up, and just getting on with it, but I just couldn't let it go, it felt so unjust, how can they even comment on my condition without understanding it? they don't live it, they don't have to sit with their elevated, they don't get pain from a simply train or car journey, from sitting down or standing still for more than 5 minutes. So I kept fighting and I am glad I did.

On the 7th July at 3pm I had my tribunal hearing at Bexleyheath Tribunal & Courts office. Honestly I was really nervous, I knew I was totally in the right, I had been honest about my condition and how much I could and had been working, I had all the evidence, but I still felt sick in my stomach. I was glad it was coming to a head though, the fighting, the constant letter writing would after the hearing be over. I went into a room with a Judge, a Doctor and a Clerk. There was nobody from the DWP there, good I thought. They had all my evidence, the Doctor asked me a couple of questions regarding my condition, and my limited capabilities, then asked me to leave the room for 5 mins. I came back and there was a letter on the desk, they told me they had made their decision and that they would write to the DWP. I took the letter and left.  The letter read:

The Appeal is allowed
Miss Johnson has limited capability for work
Total 15 points meets the threshold for an award of ESA

I smiled the biggest smile I have smiled in a long time, they believed me and I was right, I don't think I have ever felt happy that I have limited capability for work, when I first got the medical certificate from my Doctor telling me I had a permanent condition my heart sank, whereas on this appeal notice, I felt accepted, recognised, visible. I left feeling a sense of satisfaction, I went home read the small print and the DWP doesn't have to pay me any back dated benefit. I am contested 3 months of ESA, I really don't think they will not pay up, I certainly hope not, but anyway I won my appeal and that is what matters.