Pip assesment today

[Leecylou]

I had my pip assesment today and i'm not sure how it went. I'm still waiting to be confirmed with lupus. I've had positive ana and dsDNA for over 10 years with various joint problems fibromyalgia nerve damage in the neck fatigue and many other problems for years. Just after Christmas I had myopericarditis when the cardiologist asked if I had heard of lupus as this could be the cause. After 4 months of fast tract appointments and tests with the cardiology department my GP referred me to Guys to the lupus clinic (wonderful place) where they I'm being seen by Mr Sangles team. I've had an appointment at the chest clinic but was unable to do the lung function test and they stopped it. I'm back there in two weeks along with an appointment with their cardiologist. The person from Altos seemed very well informed on lupus, fibromyalgia, myopericarditus and the other health issues I have. She asked about work and said she was pleased I'd been signed off again told her I was working part time and reduced hours with restricted workload. She asked if I went for a walk how far could I walk before I was breathless exhausted and in pain. I told her I only walk when I have too and she said probably no more than a minute before I stopped and how many times could I safely repeat this without causing distress. She then asked about who cooks said my partner because I'm exhausted after I've worked and if I'm not there I will have toast or reheat a ready meal. She asked about our house said it was a bungalow which was just as well now. She then asked about my hobbies which use to be gardening decorating reading going out etc I now struggle to read for more than ten minutes at a time. She said she wouldn't keep me much longer as she could see I was exhausted. I then had to tell her the three words she mention earlier and was then asked to move my neck which I only have part movement in she said she had recorded there was limited movement to the right then I had to move my arms which I could my left and struggled with the right arm from where I had had a shoulder op after a fall. When she asked me to stand up and touch the floor my mum who was with me said she would rather I didn't incase I fell she said perhaps I shouldn't I said I can lean forward sitting down but didn't feel it was relevant to stand and do so. After the meeting had finished she walked us to the door where she stood to chat. I had to lean against the wall as I was breathless by the time I got there (this was less than 15 metres away) she then said she hoped they found a way to help with my health at guys and suggested I asked my Dr to recommend blue badges. Now whether that means I'm not going to get any help from them or whether it means she could see how difficult it was I'm not sure.

[LupusKaren]

Difficult to say LeecyLou, the DWP and their medical assessors and not exactly consistent, two people with the same conditions, could end up with totally different awards.

Your HCA at least was knowledgeable of your conditions, that is a rare report. It really is a case of waiting it out now for your decision. In the meantime, just to be prepared, I would advise you start researching the 'How to Appeal a Decision' now, in case you are refused, and wish to go down this route.

If you do find you need to appeal, please do not do this without professional Welfare Rights advice, organisations such as DIAL or CAB.

There is also an advocacy group which I can let you have details of privately, online, who run a forum also, they are absolutely fantastic.

[Leecylou in reply to LupusKaren]

Thank you LupusKaren

I recently joined benefits and work group that many people recommended. I guess it's a waiting game like many others I would be grateful of any other advocacy group that could help. I did advise her when she asked if I knew how the meeting would be conducted that I had been online and was aware of what to expect. It's very difficult to know how they will proceed but I did have several letters and test results for the pericarditis. My GP had also put lupus? And awaiting cardio and rheumatology results so hopefully that will help x

[Leecylou in reply to Leecylou]

Following my PIP assesment on the 9th July I had their decision yesterday in the post (18th July). I was awarded the standard rate for care but only 4 points for mobility which I'm going to appeal. They have put I can walk more than 50 metres but no more than 200 metres when she asked I told her that it was rare for me to be able to walk far before I'm out of breath and exhausted. Like most sufferers I spend many days not being able to get further than the bathroom this seems to of been overlooked. As I'm trying to work part time, they have put that as I can drive to and from work up to 3 times a week mobility isn't a problem. As we all know it's the walking to and from the car that most people myself included struggle with. I'm lucky that when I arrive at work I pull up outside the office door and someone parks for me and it's back outside for when I leave none of this has been taken into account. I will say from what I'd been expecting it was a surprise to have heard so quickly. My Dr advised on the day of the assesment that he hadn't been contacted and probably still hasn't. I'm back at Guys on Thursday to have another attempt at a lung function test and to see the cardiologist so I'm going to wait for their advice before I start my appeal.