After months of waiting for things to happen I’ve suddenly had several weeks filled with assessments for all sorts of things; carers assessments, PIP assessments, option assessments and also assessment results back from university. It’s felt pretty busy all of a sudden and there has been a lot of reviewing everything. I had been really hoping that all my assessments for things would hurry up so I could start getting help that I needed put in place but what I didn’t expect was for them to all be quite depressing. The assessments, understandably, are designed to work out what is going wrong, what you need help with and what you can’t do. However, I’ve found that quite tough. I try not to focus on the negative side of things as much as possible and suddenly I’ve had several weeks of meetings that have all focused on problems and difficulties. I also realised I hadn’t quite appreciated the extent my health has deteriorated and how much I’ve lost the ability to do things. Probably because everything has happened gradually over the course of this year things have just slowly changed or adjusted and I’ve needed more help with daily tasks as time has gone on. It was a bit of a shock therefore to suddenly have to examine the differences between me being well and now and list everything that has happened. It also became more apparent that my symptoms have also been present for quite a long time and I just ignored them as they were milder for many years. This has been a bit of an odd realisation as suddenly more and more things are linking together that I had previously dismissed and just carried on with. All of this has been quite hard to bounce back from as well as physically exhausting with having a lot of meetings all clumped together. Luckily all of them were carried out at home so I didn’t have to travel anywhere. I’m now waiting to hear back from them all as to what the next steps are.
My carers assessment was probably one of the toughest assessments to get through as it was very long, fairly repetitive and quite difficult to know what sort of information you were expected to give. Carried out by a social worker they looked at what help I need with day to day living, taking part in social activities and getting out and about. They also look at whats already been put in place, what the goals you want to achieve are and barriers in the way of reaching them and also how you feel on a daily basis both mentally and physically. I didn’t quite expect there to be so many parts to this assessment and ended up having to have it carried out over two separate meetings as I wasn’t well enough to sit it all out in one go. I’m not too sure how it went overall as the assessment didn’t feel like it was very well geared question wise to me or to someone who has health that is still deteriorating or in fact to younger people. My longterm goal is I want to live independently, I do want to work and I want to carry on studying again at some point but I have to wait for more health answers first from hospitals and that got quite confusing to try and explain. It felt a bit like the assessment tried to put you in a restrictive box and assumed because you were ill that you had no plans other than to sit around doing nothing and have it arranged that people would be paid to come to your home to talk to you about the weather or something for an hour a week (OK I’m quite cynical and possibly over exaggerated a bit but it did feel very much like that!) The assessor also seemed fairly convinced I needed to have a television in my room (I don’t currently and don’t have any plans to) and I don’t think she understood that. The assessment then finished with several questions that felt a bit patronising such as ‘name x number of things that are going well with your health right now?’ This after an hour of all that’s going badly seemed a little bit odd and seemed a bit like a token question on the assessment sheet to try and end on a positive note but was kind of hard to answer. I have about a months wait to see a copy of the report from this one.
In-between my two carers assessments I had my PIP face to face assessment. PIP is a benefit paid to people who struggle with daily living tasks and mobility in the UK to help you be able to get support with these types of tasks. You apply by sending off forms and evidence and then you have a face to face interview with an assessor who checks your evidence, asks you a lot of questions, gets you to carry out exercises and writes a report on the interview. In the press there is a lot of horror stories about PIP assessments and so I was incredibly nervous about this. Luckily, I was surprised at how well it seemed to go. Originally I had been told my assessment wouldn’t be until February but it actually ended up being less than a month after I sent my forms in. I heard I was having an assessment four days prior to the day and also found out I was being assessed at home. Assessments are normally only carried out at home if you are terminally ill, or have good supporting evidence as why you can’t travel to an assessment centre. I had expected to have to travel for it and was really nervous about that as I really cannot sit up for very long, so I was incredibly surprised and relieved to find out they would come and visit me. The day of the assessment I was in the middle of a flair up and not long out of hospital so she was quite happy that I was stuck in bed and just carried out the interview in my room. The assessment lasted about an hour and a half and was mostly a lot of questions covering all sorts of things. I then had to answer some maths questions and spell words backwards which was easy and then I was supposed to have a physical assessment where they ask you to carry out several activities and see what happens. However the assessor took my pulse and oxygen levels before any of this and as these were not good readings and apparently I was a fairly grey colour she wasn’t happy for me to do anything as she was worried she would end up calling an ambulance so that ended the assessment. While I am not sure what the report will say this assessment was no way near as scary as I thought it was going to be and the assessor told me to appeal the decision if I’m told I’m not eligible. While there were some questions that did seem a bit designed to trick you out if you weren’t genuine, this was one of the best face to face assessments I’ve had throughout the process of being ill. I’ll get the assessors report in a couple of weeks and the decision in about a month.
This month I’ve also heard back about my masters degree assessments. I’m absolutely thrilled to have passed my course and also did better than I had expected I would do when I handed my final dissertation in. It’s made it really worth sticking it all out when it got really tough towards the end and has been excellent news to get in amongst all the other assessments!
Now just to wait for next week- the week of London hospital tests!