Hi there,
Nearly 2 years since my diagnosis, I have tried to apply for PIP. I put it off, knowing what I know about the criteria for PIP and how it is awarded; I did not think I would meet the criteria.
I received the letter this week that I'd been declined for PIP after having an assessment.
I wasn't awarded a single point in either the daily living or mobility, even though I expressed the way MCAS affects me daily and how it affects me more in bad patches e.g. summer time with pollen and not leaving the home.
For the wider context, I have been out of work since my diagnosis. I pay for compounded medication privately as I can't get it through my GP, and the payment would be so helpful to go towards that and other supplements/treatments to try. MCAS has affected so many aspects of my life and has reduced my capacity for so many things due to my reactions, symptoms and avoiding triggers.
In my claim and assessment, I listed other conditions, including IBS, Irritable Bladder Syndrome, Dysautonomia, Small Fibre Neuropathy, Chronic Fatigue Syndrome and Chronic pain, as well as some conditions that are in remission.
Some of these conditions aren't formal diagnoses, as I have found it very difficult to get the support I need from the medical system and have had to sometimes come to a somewhat educated conclusion about a suspected condition and try to treat it without a concrete diagnosis. I wonder whether this has affected my credibility in the assessment. I do, however, have a confirmed diagnosis of MCAS.
I explained when I was asked about my fluctuating abilities, as the assessor asked about how much of my time in 12 months I would be unable to do x, y and z or with great difficulty. I said I had been in bed for 3 months with chronic pain, etc., in the past, and for MCAS for 6 weeks/2 months, but that wasn't the case currently. Perhaps I should have claimed during that period of time?
Are there any UK-based people here who are recipients of PIP with MCAS as their main condition, or with perhaps some other conditions similar to what I listed above.
What I am trying to ascertain is whether there is any point in submitting an appeal or if I am wasting my time.
I don't know whether I explained the way the condition affects me well enough or if I'm fighting a losing battle because MCAS is still not very well understood. I was finding it difficult to explain why I wouldn't be able to carry out certain tasks if I was in an MCAS flare. I don't know if she fully understood why it limits me.
Any advice or thoughts would be welcome, thank you.