In the name of the wee man!

A while back I wrote to my local MP, Kirsty Blackman. I wanted to bring to her attention the complete lack of knowledge of Ehlers-Danlos Syndrome among medical professionals. Not just because I have a bee in my bonnet about it, but because If I didn’t have such an amazing support network, I’m not sure I’d still be here and I don’t see any need for more people to go through the same process due to nothing more than medical ignorance. This illness in itself is enough to push most people right to the edge. We don’t need medical professionals dismissing us as attention seekers or malingerers on top of the daily pain and struggles we face. We need doctors who can see that something is wrong and to look for answers – not try and get us out of their office by any means possible.

Then this popped up in my inbox at the start of the week:

“Dear Lauren

Thank you for your message and for highlighting this issue to me.

As you may be aware health is a devolved issue and as such responsibility for health policy in Scotland resides with the Scottish Parliament and MSP’s as such they are best placed to comment on this issue. However I appreciate that many individuals with rare conditions and health issues can experience issues with diagnosis and access to treatment due to the rarity of their conditions and health professionals lack of awareness.
 
I note that I have unfortunately missed this year’s EDS Awareness Month as this was in May. However I will keep the condition in mind and see what I may be able to do in my role as an MP to raise awareness of the condition.
 
I have written to the Scottish Cabinet Secretary for Health regarding the condition and passing on your concerns about a lack of awareness on to them. I have also written to NHS Grampian to highlight the issues you experienced with diagnosis and treatment and asked what they are doing with regards to raising awareness.

I attach a copy of both these letters and will forward you copies of any responses I receive.
 
Kind regards
 
Kirsty

Kirsty Blackman
Member of Parliament for Aberdeen North”

 

This has made my week. I really, truly felt run into the ground and like I needed someone to stand up for me, and my local MP came through. I still need to make my biblical complaint to the NHS but now it feels easier knowing that the Chief Executive of NHS Grampian is aware of the issue. I’ll copy the letter she sent into the comments section, if anyone’s interested! I’m utterly delighted and can’t wait to hear what they have to say in response.

In other news, I hit 100% of my £75 fundraising target for Ehlers-Danlos Support UK, which is awesome. It’d be nice to get to £100 over the next couple of weeks, but I’m happy regardless. My finger nails are driving me insane but it takes my mind off the pain.

I also found out in pretty spectacular fashion that I am also allergic to Lansoprazole which I was given as an alternative to Omeprazole as it wasn’t really doing anything for my acid reflux. The fact that I’ve stopped both medications and am taking strong antihistamines and eating a low histamine diet and my reflux is better than it’s been for a long time tells me all I need to know. Looking forward to seeing immunology! Officially not taking any more new drugs, not even if my arm is hanging off. It’s just not worth the risk.

donut
These are absolutely not “low histamine” doughnuts and I don’t care. Worth it.

Yesterday I saw Katy Kindness, the pain psychologist, who was not a disappointment. She was lovely and very understanding but didn’t really have anything to add in the way of coping mechanisms. She agreed that I’m in a horrible situation and am making the most of it. It was so helpful having the lovely occupational therapist lady there too, as it meant I didn’t have to explain my condition or the extent of my pain. I wish she could come to all appointments with me! So, although it didn’t make me any better, it made me feel more justified in my low moods. It’s not mental illness, it’s situational. And my situation can really suck at times and there is absolutely nothing I can do about it, except eat doughnuts. So I had a doughnut for breakfast today, it was glorious.

Ren x

 

Advertisements

8 thoughts on “In the name of the wee man!

  1. brokendownbody says:

    Both letters are basically the same, so here is the one she sent to the Chief Executive of NHS Grampian:

    “Dear Malcolm

    One of my constituents has recently written to me to raise concerns about a lack of knowledge of Ehlers-Danlos syndrome (EDS) from medical professionals. They fear that this can lead to misdiagnosis and delays in receiving appropriate medical advice and treatment.

    My constituent feels that awareness of the condition is currently lacking and that efforts should be made to address this issue. They report their condition being ascribed to anxiety and that they have felt like they have been treated like a malingerer and time waster. Therefore I would appreciate if you could inform me what awareness training is available to General Practitioners and other health professionals to assist them in identifying and diagnosing EDS correctly and promptly. I would also appreciate if you could inform me if NHS Grampian intends to provide such training for staff and General Practitioners across the region.

    I look forward to your response which I will share with my constituent.

    Yours sincerely

    Kirsty Blackman MP

    Aberdeen North”

    Liked by 1 person

  2. clairesaul says:

    Well done. Ren in raising awareness and what a great result. Will reblog and retweet in order to spread the word and others might contact their MPS…..Mr Grayling, watch out from another zebra!

    Liked by 1 person

    1. brokendownbody says:

      I think a lot of us just hit rock bottom and just muddle through each day, sometimes we need someone to speak up on our behalf. This gave me a huge boost. Ehlers-Danlos Support UK had a great template letter that I adapted to living in Scotland. Well worth the effort 😊 thanks for reblogging this!

      Like

  3. bowermanland says:

    Well done! It took my MP weeks to get back to me about ESA (rather than EDS) – but she sent me a copy of a letter and answer she got from a minister involved. All very dispiriting. My MP is in London and is Labour so she can’t do much. But thank you for working for us.

    Liked by 1 person

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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s