Has anyone had experience of Brainstrust or know much about it?

[Fizzink38]

I've had a number of health issues this year relating to a brain tumour. I've felt very unsupported and have contacted this charity a number of times. Their website looks amazing, but apart from a box full of very glossy, expensively printed booklets, I've had no success actually accessing any of the services they say they offer.
Have I just had a one-off bad experience?

I'm sorry you are going through this. I wonder if the support varies by area. My husband's cousin has mnd and is struggling to get support from some of their charities. There seems to be a lot of fundraising for research for these things but sometimes the support of those living with it varies.

When my husband had a brain tumour I got a bit of online support and he got support through the Maggie's centres.

Have you tried the "Brain tumour charity"?
I think this one took on a lot of the smaller charities which struggled to survive by themselves.

I hope you get somewhere.

Thank you, I appreciate that, and I'd never heard of that charity. I'll give them a go.

It’s truly disappointing to hear that you’ve felt so unsupported during such a difficult time. I hope your experience improves and that you’re able to access the help and services that were promised.

This, what support is it you’re looking for? Maybe the hive mind could help?