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Hello - Carers UK Forum


Tell us a bit about yourself here.
Hi everyone,

Sorry I log on so seldom that I don't know half the people on this forum and those that do remember me must think I'm a ghost. I just wanted to say hello and sorry for constantly being a stranger. I hope everyone is as well as you can be and are staying as stress free as you possibly can. Although I know the latter is not particularly easy.

For those who don't remember me. I care for my boyfriend Stefan (Stef) who has Chronic Fatigue Syndrome, Mechanical back and neck pain, pattello femeral syndrome, and depressive disorder. (For those of you who do remember me, Stef has now been diagnosed with all of he above not just the Chronic Fatigue.)

Stef can trace most of his symptoms back to the first Gulf War, and firmly believes that all of his symptoms equate to having "Gulf War Syndrome." Which looking at his medical records is the most likely explanation. Stef is a member of the National Gulf Veterans and Families Association, and as a result of their help, the Military have accepted full responsibility for causing Stef's illness and have awarded him a 40% War Pension which is based on the period April 2007 - December 2007.

Stef was first diagnosed with Chronic Fatigue in September 2005 after taking a bit of a nose dive. In January 2006 he started a 6 month absence on sick leave from work. He managed to gain enough energy over that period to contemplate going back to work on 17th July 2006, and did so not only to ease his boredom but also because he was about to go onto half pay, and we couldn't afford the loss in finance at that time.

Stef and I both work for the same organisation in different departments but with the same senior management. Two days after Stef had returned to work, my senior management made the decision to transfer me to another location further away from home. I made representations regarding this on the grounds that Stef had only just returned to work, we were both getting our heads around the changes to our lives still and it was just not feasible if I were to be available to be there for Stef. My management extremely reluctantly made a "U" turn on their decision, but the pressure of caring and the fight to remain at my current working location took it's toll on me and in August 2006 I went down with depression,anxiety and agoraphobia. That was when I first made contact with the Carers UK site.

Stef carried on at work, but his working hours were decreasing, as was his health from dragging himself into work each day. By the end of 2006 he was walking with the aid of a stick, using a mobility scooter sometimes and was finding it impossible to concentrate on work. As a result, in February 2007 the Occupational Health doctor advised that the Organisation should consider him working from home and until working from home was set up Stef should receive "Special Leave" where necessary so he could recuperate to be able to perform to his best at work. Meanwhile, I got better and returned to work in January 2007 feeling much stronger, but placed on light duties.

The organisation looked after me quite well, and put me on project work until I felt able to face the public in my normal role. However, the organisation let Stef down unbelievably. They constantly refused him "Special Leave" as advised by Occupational Health, and therefore had to take his annual leave to recuperate, because of our finances he would have gone down onto half pay if he had gone sick. It also took over 6 months for the organisation to provide a working computer from home, by which time Stef's health had deteriorated so much that he could not work for more than about 2 hours per a day, he constantly needed a stick to aid walking and spent all the time that he was not working flat out resting. Neither Stef or I had a life together. Work was just too much for him.

Stef put a formal greivance in to senior managers at work regarding the length of time it had taken for them to set up a computer at home. Bearing in mind other people within the organisation had computers set up within days and weeks rather than months and there was also a spare lap top in the department that Stef worked in, which they did not allow him to use. However, the senior manager told him that he saw the greivance as "more of a memo." than a fomal complaint an persuaded Stef to informally resolve the issue. The Union were useless too as they left the whole thing too late before they contacted a Solicitor and there was nothing left that could be done to hold the Organisation to account. Even more frustrating the Organisation started using me to relay messages to Stef rather than contacting him themselves and also expected me to take annual leave to take Stef to appointments at Occupational Health, knowing full well that Stef was unable to drive himself due to the distance he had to travel. It was also left down to me to collect the computer they eventually allocated to Stef.

I returned back to my full duties in August 2007, but in September 2007 The Organisation told Stef that he would have to go off sick on full pay because they deemed him too ill to be at work. He was struggling to complete 2 hours work per day and they deemed that unacceptable. They then started the procedure for him to be pensioned out on a medical pension. By this time, the Military had already accepted responsibility for Stef's illness and he was receiving a 30% war pension. The army had also diagnosed him with the other illnesses too.

In September 2007 I put in for promotion at work and was turned down on the grounds that I had fought the location move 18 months earlier, despite it being in Stef's interests. My senior manager implied that I had faked my depression to get what I wanted and told me that fighting against the move was the only reason for turning me down. He said to me that "Maybe now you'll realise you can't get everything you want easily." I went to the Union but they said there was nothing they can do, and because I am technically appointed to post rather than employed I had no rights as a carer and was left to decide on whether to leave or put up with the bullying.

In January 2008 Stef went to tribunal over his pension as his quality of life was certainly not 30% disability as we are unable to go on holiday, he is unable to drive more than about 10 miles and is unable to walk further than about 500 metres, and certainly not without the aid of a stick at the very least. The tribunal decided that because Stef was working 4 hours per day in April 2007 he was only 40% disabled.

Stef is still undergoing the process of being pensioned out of his job. I am applying for other jobs but am in a quandry of what to do because a change of jobs would most likely mean working further away. Stef is now pretty reliant on me and has deteriorated no end in the last 6 months, although he is still able to take care of his personal care and is not "severely" disabled.

Stef is now also claiming A L S O from the Military and at long last I and the National Gulf Vetrans and Families Association has persuaded him to let me contact Social Services for an assessment. I never would have believed a few years ago that our lives would end up like this. But I love Stef so much, I'd rather be with him and struggle than be without him. He is my whole world.

Mandy x x
Welcome back Mandy, to you both.

Of course we remember you and thank you for bringing us up to date about you and Stef.
I hope the assessment goes well and that you can access some sort of help.

Please keep us posted.

x x
Hi Mandy
Just wanted to wish you all the the best, also as 1 ex service personal to another keep fighting, for the full service pension Stef earnt it and deserves it.
Good to see you back, Mandy. Hope all goes well with the assessment.