Hi SummerSky
For sure. The producer, Rob, asked me for the ‘types’ of people I wanted. I asked for a medical expert, somebody from a charitable/campaigning perspective, an employment law expert, and Jennifer Brea specifically.
There were and are a million other things I’d like to do but the purpose of that specific show was awareness-raising to a mass audience rather than other more specific and detailed issues, eg. I want to do a whole load on the scandal of the PACE trial. This wasn’t the right occasion.
It’s helped open the door to more things, which is exactly what I was hoping for. The next key thing for me, in time terms, is to raise awareness of Millions Missing day on 12 May... though I need to properly rest up and recover first!
I'm guessing Rob (the Producer) went to AFME and that was how you ended up with Julia Newton and Emily Beardall. Also Emily works for AFME as a volunteer and I don't personally think she wasn't a good fit because she wasn't actually diagnosed until 4 years ago. Her "campaigning" seems to be only as a AFME "volunteer" and doesn't involve any of the petitions, NICE guidelines, demonstrations, various Govt reports and all the other milestones of the past decades that one would expect from a "campaigner".
The employment law expert felt a bit tacked on at the end and I'm not sure if she added any value. Not sure how many patients would need general advice as most I know are too sick to work. If they do have "good times" and try and find a part time job then they face the same challenges that all sick and disabled people face. Employers in my experience won't touch the long term sick. We face different challenges than the stable and disabled.
I think it would have been useful to explain at that point how very sick patients are and how suddenly and how that robs them of careers and education overnight. It's benefits that are the battle for most patients I am guessing. Then poverty through long term sickness, no real medical care or treatment and left to rot and die.
Those with work place pensions and insurance can find that there are no medical experts willing to act for them. They can face insurance companies that insist patients do CBT and GET. I know of one patient who had that problem and deteriorated.
I think that the employment law expert did make the very good point that one needed to be covered by disability / human rights legislation. Delays in a ME diagnosis are going to cause this. However, what PWME face is something quite specific. Normally in the UK it's diagnosis and then treatment - in the UK for ME it's often a superficial diagnosis from a poor excuse for an "expert" and then potentially harmful treatments if at all.
It could also be pointed out that if one is employed and gets ME then the advice given though any workplace medical expert (especially if allied to an insurance company) can be just plain wrong and harmful.
Are there any other groups of sick people who face this extra challenge in the workplace?
Employment becomes the "least of our problems" because they have an incurable disease and no medical experts to help them. That's the position we find ourselves in. I'm certainly in that position. Employment law isn't much help if too sick to work and no medical treatment at all.
