Discretionary Trust Tax?

Hi, I have been on disability benefits for a long time, initially incapacity benefit and now ESA legacy, at the higher/old rate. It is unlikely my situation will change as in the past 5 years my health as deteriorated even more. 
My father created a new will this year and set up a discretionary trust for me as the primary beneficiary - he also added a secondary beneficiary for if anything happened to me.
He'd been trying to put the house into trust for several years and was at risk of signing everything over to some random company so I recommended the coop as a reputable company, so as to protect my benefits. 

He sadly passed away last month and I am in the process of getting someone to do all of Probate (although may cancel this and do it myself as its more than 10% of his bank balance). His entire estate including property is less than £200,000 so no IHT issues

However during this process I've stumbled upon the fact that discretionary trusts can be subject to quite high tax and it may not have actually been the best thing to do. I'm not sure if I've understood correctly and want to try and get some info before i involve the trust, as someone's suggested i do a variation of deed to bypass the trust and risk not having ESA for a little while. 

If the discretionary trust paid me up to £1000 it would be subject to 20% tax? 
If they paid me £5000 to my bank account, it'd be taxed at 45%? (Though i believe i can get a tax refund afterwards but again would be minimum 20%?)

Alternatively, if i tell the trust i needed £5000 to pay for a new bathroom, or to upgrade my car to something more suitable (we'd been looking at getting a car for me most of this year but, to say he's awkward would be an understatement but, my current car leaves me in pain after sitting in it - even as a passenger seat). If they paid the bill directly, it wouldn't be subject to the same tax rules? Would there be any tax in that scenario?

As it stands at the minute, with the cost of a full probate service and 20% minimum tax, it would be only marginally above the £16k limit and if we'd actually realised that instead of "all you have to do is ask" i don't think my father would have gone ahead with the trust either. 

So really am thinking of doing it all myself and not using the trust either.
His house if i move into it (versus selling it), does need a little bit of work - new bathroom, kitchen at the bare minimum.