I have been on life long DLA for numerous years for aspergers syndrome which is a life long condition. I was on medium care and low mobility for this.
Over the years my physical health has declined. I have found out few years ago that I have a rare genetic condition called enlers danlos syndrome. Due to this genetic life long condition I have developed various other chronic health conditions as a secondary consequence of eds including postural orthrostatic tachycardia syndrome, fibromyalgia and severe chronic fatigue.
Because of the decline in my physical health over the last few years I was advised to apply for ESA and put in a change of circumstances for dla by my medical health professionals.
At this stage the changeover from DLA to PIP was starting to happen in our area.
I began hearing horror stories of other people going through Esa assessments and changeover from dla and pip. This increased my anxiety tenfold and my mental health began to decline dramatically as a result.
I then was too scared to apply for ESA and to “put my head above water” for the dla to pip change over despite all my health professionals advising me I should apply for ESAand put in a change of circumstance for DLA as I had got worse physically
My DLA to PIP changeover has finally come so I have no choice but to go through it now.
My mental health has significantly declined already and I am only at the stage where my PIP forms were filled in (by my carer as I have been too poorly to do so myself and mentally I could not face doing it).
Because of my various health conditions a home assessment was requested. This request has been refused 3 times already by Capita.
I had trouble getting my GP to write a letter supporting a home assessment (as it is my GP Practice policy to not write letters for disability benefits). However because of the severe deterioration in my mental health as a result of Capita refusing a home assessment and because I was extremely close to self harming my GP did write a letter telling Capita I was not fit to attend a centre based assessment.
My carer wrote a covering letter asking for my GP letter to be considered. My carer posted this letter in with my GP letter.
1 week later after doing this a letter from Capita came saying I had to attend a centre based assessment.
This has led to even further decline in my mental health with increased panic attacks, increased melt downs etc.
My carer phoned Capita and was told by Capita that because we didn’t call up to request that this new evidence was looked at that is wasn’t looked at (even though the covering letter was sent along with the GP letter to ask for this evidence to be considered). We didn’t know we had to call up to request that evidence was considered because we weren’t told this at all – we are having to jump through hoops that we didn’t know existed.
My mental health has declined even further because of the experience I am having with my claim already. I am already at the stage where I want to stop my claim completely.
My family (including my carer) don’t want me to drop my claim this because they believe I am entitled to what I am applying for.
The decline in my mental health is subsequently causing a decline in my physical health. My carer has now had to apply to become my appointee (again we weren’t given the information at the start of this process that my carer could do this) so that they can deal with my claim on my behalf as I am not well enough to cope myself anymore.
If it was up to me I would just stop my claim completely now.