Posted by: mads04 | November 15, 2015

Billy Bullshitters

When living with MND you learn to live with bull-shitters, bull-shit off people you think you know, bull-shit off people you don’t know. 

I met a so called financial expert who was at my first appointment at the MND rehab centre. His name was Tom Hughes. I thought he was helpful at first because dealing with a benefits form when you’ve never done it before is like a mine field. So super Tom is telling me not to worry he’ll guide me through it all and help as much as he can. Over the next 3 weeks I rang him several times leaving voicemails to no avail. I had to fill the form in myself, didn’t have a clue how to do it and got a reply to say I’m not entitled to the higher rate of disability benefit but I was entitled to the lowest rate of £55 a week. Hallelujah!! This whole process took 6 months. So that was 6 months of no income with a mortgage to pay and 3 young children to support. Welcome to MND benefits street!. Than ks for that Tom! I bumped into this knobhead about two years later at the MND rehabilitation centre, he tried to say hello and even though I was two years in with MND, I still had a decent death stare. He got the message and walked off. 

The amount of information you have to take in at you’re first appointment is scary. Talking to several medical professionals about life with MND. It’s a whirlwind and surreal experience but the people are there to help you.  You should be introduced to someone working for the MND association at this appointment. I met a lady called Kathy James who has since retired, she was a nice person who did her best for people living with MND in the merseyside area. Kathy came to my house a few times to discuss how the association can help me and my family. After trying to get my head around life with MND I appreciated Kathys support. 

I’ve never seen the person who took over Kathys role with the MNDA, even though Kathy retired over 2 years ago. False promises are something I’ve found over the last 5 years that the MND association excel in. 

Chris James who works for the association as external director (He couldn’t direct traffic) is the biggest bullshitter I’ve come across, this was the same man who asked me to delay the mime for MND campaign because it clashed with the MNDA campaign. He hasn’t got a clue about life with MND, yet this fella has told me so much shit it’s beyond me how he has a job. Every time he got in touch with me he was apologising for actions of MNDA staff but was doing nothing to address the problem. He came to a meeting at my house about a year ago with a colleague, coming from London to Liverpool via train. He was here for about 90 minutes to basically try and get me to go easy on the association on Twitter. God forbid that even though I have MND I’m not allowed speak my mind. When he left I couldn’t help think that the people who raise money for MND have just paid for Chris and his colleague to come to Liverpool and was a complete waste of time. 

I told Chris at this meeting I was a bit pissed off with a few things the association were doing regarding awareness etc. I felt we done brilliantly with the football v MND campaign. It was a huge success but the association never followed it up and capitalised on the awareness raised. Something Sally Light agreed with me on nine months after this meeting.  I also told him that I’ll always be honest with him so I expect the same from him. The reason I told him this was because earlier on that year, the association lost my trust over where a £10,000 donation on my behalf ended up. I was promised it would go to people on merseyside but half of it ended up in MNDA headquarters. I might aswell have been talking to a brick wall because he loves a fib this fella. 

He agreed with me that some people who are used in MNDA campaigns should get better support after the campaign has finished. The MNDA need people with MND and when they’re finished with them, its onto the “next victim”. Only a few of us experience this because not many survive long after. 

Emma Johns works for the association and was hugely involved with the football campaign. During the campaign Emma would be on the phone constantly, “Mark would you be able to go to such an such a place and promote the football campaign?” “No worries” was always my answer. Not once did I refuse to go anywhere for the cause. Whether I was having a bad day or not. I remember Jayne saying to me after a hectic day “I think they (MNDA) forget you’ve actually got MND sometimes Mark” she was right, but at the time I was focused on raising awareness. The last time I heard off Emma was around 18 months ago. I suppose it was job done for her. An email costs nothing! 

In the end I got fed up of emailing Chris and emailed Sally Light who’s the chief executive of the association. Some of the bullshit she spun me was up there with the best I’ve heard. She told me the usual copyright crap over mime, and also telling me she didn’t think Twitter was a good awareness raising tool for MND. If it wasn’t for Twitter and social media  I would never have got involved with MND merseyside, and more importantly, the ice bucket challenge wouldn’t have been so successful. In fact when the association first seen the ice bucket challenge they refused to back the campaign, claiming it wouldn’t catch on!! £7.5 million later, you couldn’t make this shit up could you? Make what you want of that but I find it bizarre. It just proves to me again that the hierarchy at the association haven’t got a forward thinking brain between them. 

Social media is free advertising and the association have made it quite clear they’re not going to fund a TV advert campaign. So why not try a social media campaign? 

Imagine sitting in you’re home watching an advert on TV about the donkey sanctuary and how you can donate to help save donkeys all around the world. Now I love animals and I’m all for saving Eddie Murphy and his mates but how come our four legged friends have got an advert and people living with MND haven’t? 

I asked her why the association never got behind me and my friends when we achieved 100 miles with MND. She gave me excuses ranging from the association thought a couple of re-tweets on Twitter were sufficient to she thought the association might have missed it because of the ice bucket challenge. That makes sense doesn’t it? Billy bullshitter!! If I had terminal cancer and completed 100 miles over an 18 month period for cancer research do you think they would’ve ignored it? I thought it was a valid question but Sally never answered it. To be fair to Sally she’s not alone in this. I asked Chris james the same question and surprise surprise he never answered it either!!. 

The association never thanked us or congratulated us on achieving 100 miles with MND. We achieved 100 miles in various races over an 18 month period. A period in which over half the people diagnosed with MND will sadly lose their battle. A couple of re-tweets on Twitter was deemed sufficient by the hierarchy of the association for this achievement. I found that insulting and embarrassing on the association’s part. I don’t need recognition or thanks for what I achieve with MND, I’m not in it for that, I do what I do to help give a voice to people living with MND, but the people who achieved it with me should’ve been thanked by the MNDA. To say they thought a couple of re-tweets were sufficient for our achievement was basically telling me it meant fuck all. Thanks for that Sally. 

The association, in my opinion would rather promote an MND patient sitting in their wheelchair being spoon fed by a loved one, than an MND  patient achieving something. They must think it was easy to do 100 miles with MND. Well I’ve got news for them if it was that easy how come I’m the only person on the planet to have ran/walked it??? 

Sally tried to convince me the MNDA  couldn’t promote or re-tweet a mime video because she was afraid the artist who’s song was getting used might sue the MNDA!! Lets just look at that statement. 

Number 1, It’s bullshit! Number 2, Who is going to sue a charity because someone’s mimed a song of theirs? Number 3, It’s bullshit! Number 4, Even if the artist tried it and they wouldn’t, it would raise MND Awareness and get the public on the association’s side. Finally number 5, Not sure if I’ve mentioned this but it’s still bullshit!!. 

I had a meeting the other week with Alun Owen who’s chairman of the trustees for the association and it seems Sally’s been telling him fibs as well. Alun told me that Sally informed him that she offered to come and see me personally during our emails, To which I told Alun she never and the truth was at the end of a months worth of emails and getting no where. I told her the fact that she’s never asked for a face to face meeting tells me everything I need to know about her. She apologised and said she assumed I mightn’t be in the best of health for a meeting. She was wrong to assume. She was also wrong to tell lies to Alun, who I could tell wasn’t to pleased when I told him the truth and also offered to show him the emails to prove it. Billy bullshitter!

A big thing for me were the MNDA let themselves down is they’re terrified of being controversial. It’s all too nice, they have restrictions on what to promote which to me is a contradiction in itself. MND doesn’t care who it kills, so why do the association have restrictions on what they do to promote MND awareness. They arse lick MPs who couldn’t give a shit about us. George Osborne and that other prick Ian Duncan Smith are cutting benefits off the most weak and vulnerable. People living with MND are at the forefront of this. The MNDA held a parliamentary reception for MPs in June at Westminster to celebrate delivering the MND charter, A signed petition  which is directed at getting people with MND quicker access to medical supplies and financial issues etc, lording them like VIPs. The very next day the MND campaigns Twitter page were tweeting please email you’re MP to stop the government cutting benefits for people with MND! How does that work? One day you’re drinking champagne with them. The next day you’re asking us to email them because their gonna cut our benefits. Confused? I was. 

I don’t get this obsession with MPs. I understand we need to keep them close but when so many of them blatantly lie, sooner or later you have to say “Stop the lies, people are dying without the correct support and care so let’s see some action.” There’s a meeting next month in Westminster regarding our rights and the association are again asking the public to email their MPs to attend. Well here’s an idea, the MPs that don’t turn up for it but enjoyed their champagne in June. Fuckin name and shame them! The MNDA are terrified of them, so what chance have we got? 

I remember being asked to talk at a conference with local MPs and the Lord Mayor in Liverpool about living with MND. Kathy james asked me and I thought it would be a good chance to raise some awareness. I always try and break the ice with people with a joke or I’ll take the piss out of myself and my MND, just so people don’t act strange with me. It doesn’t always work but mostly it does. So with so many MPs in the room and the knowledge that half of them had been caught fiddling their travel expenses at the taxpayers expense not long before, I thought I’d have a little fun at their expense (excuse the pun). I started by saying, “I hope when you signed into the building at reception, that you didn’t think it was your travel expenses form.” Most of the MPs in the room squirmed in their seats whilst the non MPs laughed out loud. Awkward!!  

During the general election my local MP Stephen Twigg, remember he’s the one who got 2 free £30 tickets for an MND merseyside ball when the rest of us living with MND actually paid for ours. He’s also a patron for MND merseyside. Well anyway, his cronies knocked at my house asking “Could Stephen rely on our vote?.” Jayne quickly told them the situation and our disgust at his lack of support for someone living in his constituency with MND. They apologised and said Stephen might knock later and have a chat, as he was just down the road talking to my neighbours. Unsurprisingly, he never knocked but some of his lap dogs followed me on Twitter obviously hoping it might get my vote! And after the election, they all unfollowed me. Which pretty much sums them all up!! Billy bullshitters.

The majority of people I’ve met involved with MND have been fantastic. It’s sad that I’ve had to write about people in a negative way but I’d be kidding myself if I didn’t. I’ve praised people when they’ve done good things. I also need to be honest when people become Billy bullshitters!!. Unfortunately I’ve found a few people out over time. Egos and bullshitters. That’s life.

Life with MND is hard enough without the people who should be supporting you, bullshitting you. Not everyone who works for the association have been like this. They have good people working for them and even better volunteers who work tirelessly for the cause. I have never, and would never discourage anyone to help raise money for the MNDA, far from it , I see the bigger picture, unfortunately certain people at the MNDA don’t.

Its been 5 years now since I was diagnosed. I realise I’m extremely lucky to be alive. I wouldn’t be here now without the love and support of my family and friends. I can’t thank you enough. I’ve also met and connected with new friends who have supported me along the way. You have all helped me achieve amazing things with the “worst disease known to science” 

I hope my blogs have helped you in some small way. I know your support has helped me immensely. 

Below are a shit load of pictures of our journey with MND. Fantastic memories and fantastic people. MND won’t beat me! 

Please keep supporting MND awareness and the MND community. 

Enjoy life. 

To be continued…

Mark 

PS. As our thoughts and prayers turn to Paris and the people who’ve lost loved ones. Our Vinny was watching Sky news with me and I could see by his expression he was shocked at what had happened there. He’s 9 years of age so I felt the need to reassure him. I told him “There’s more good people in the world than bad, never forget that mate”

IMG_1688IMG_0212IMG_0193

  20140411-100350.jpg 

   
    
    
    
   
   
    
    
    
    
    
    
    
    
    
    
   

   

  image
imageIMG_020620130928-114353.jpgIMG_0464IMG_1693
imageimage

   
 IMG_02991183IMG_0190-2IMG_0189-1IMG_0073-0 
    
   
  

   
    
    
    
    
    
    
    

    
    
    
    
    
   

  

  

     
    
    

La 225La 579imageIMG_0222IMG_0201-0IMG_0205-2IMG_0211-020140420-165352.jpg 

  

  

  

 

   
    
    
    
    
  
    
    
    
  
    
    
  
 

   
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
 

Advertisements

Responses

  1. Another fantastic blog.Your honesty is spot on Mark. The ‘bullshitters’ mentioned need to give their heads a shake and need a reality check. You have done so much for the organisation.

    Lovin the photographs Mark. You have been instrumental in raising so much awareness about MND. All these events and achievements have happened with the support from your amazing family and friends. All the support and respect is a reflection of you and your spirit and determination on this journey.

    You are a true MND warrior and seeing all these photographs are proof that you loved dearly and have a fantastic support network that help you keep you fighting the way you do.

    Big up Kidda.

    You’ll never walk alone!

    Carla xx

  2. A brilliant blog, Mark. Sadly, I suspect that these types of problems exist in a lot of charities, but the MNDA could be in for the Gold here!
    Fantastic pictures…..it’s incredible what you have achieved since 2010…more than most of us achieve in a lifetime.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Categories

%d bloggers like this: