Jen’s Journey to a Quality of Life.

Update posted by Jennie Smales On Mar 10, 2018

Someone from the local Baptist Church kindly donated me a hard collar for my private physio therapist to fit. It’s REALLY made a difference to my pain levels and lots of other problems; which is great news!! If the collar didn’t help surgery would be pointless and I’d just have to live a life of pain and deterioration.

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Update posted by Jennie Smales On Feb 19, 2018

Dear Mr C*********,

My name is Jennie Smales, my referral to yourself was sent early January. Prior to this referral I had an upright MRI at Medserena and an appointment with Dr H********. As you may know, have you had time in what I’m sure is a busy schedule, I also have a diagnosis of EDS. This was confirmed several years ago by Prof. G*********** at RNOH Stanmore, where I subsequently attended their rehab clinic. Currently, I’m seeing the private physios at Dr H******** hospital in order to get my neck in the best shape it can be and am about to be fitted with a hard collar after using a soft one for a few months.

Hopefully this shows you that I am a patient who has worked hard to maintain my health at the best level I can. I have always followed my doctors instructions to the best of my ability, only having the upright MRI on the suggestion of my POTS clinic. My neck, though easily fatigued and sore, was livable until an accident on a slide in October 2016. Since then I have deteriorated. Neurological symptoms have ensued and my legs regularly go from under me. After having Dysmotility issues most of my life, my large bowel completely gave up and I now have an ileostomy as the pressure in my stomach was becoming dangerous. I twitch, judder and slur; the collar has helped these issues a lot. I also tire incredibly easily, only managing a few hours a day out of bed. If that.

My daughter is nine years old. She’s going through ********* for other reasons and is incredibly worried about me. My son is two. I’ve missed most of his life so far. My husband has had to give up his job. He is my carer and also looks after our children. Now he has *****************************, I believe from the stress of looking after me.

Why am I telling you this? Because I hope that seeing me as a person instead of a patient on a sheet of paper will encourage you to make a decision on my file. I appreciate the NHS is slower than private; but I have no energy left to fundraise anymore. My funds have run out and I still somehow have to finance my physio. So I’ve come to you on the NHS.

Please, PLEASE, will you look at my file and decide whether to see me? If it’s just going to be to tell me you cannot help, please do me the courtesy of just telling me that without me having to travel to London. My GP will not refer me to anyone else until we have an answer from you. I’ve been assured you’re one of, if not the best. I’m aware that EDS is avoided by many doctors. But this is not just degeneration. I had an accident. If someone had my scans after a car crash wouldn’t they be helped?

I’m sorry for the long email. I applaud you if you’ve read it all. But I’m deteriorating fast and I’m missing out on my children’s lives. I’m not above begging. So please, I beseech you, could you just give me an answer one way or the other.

Regards.


** As you can see from the above email, I have tried my level best to get help on the NHS. It’s just not being given. That particular Neurosurgeon has had my notes over a month. I haven’t heard back. Even regular calls to his Secratary have given me nothing. I’m trying everything I can and haven’t taken the decision to fundraise again lightly. But I have no choice.

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Thank you Chris for the donation. Fingers crossed I can find the energy to keep going and pushing this.

Jennie Smales

Posted On Mar 10, 2018

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I desperately hope that one day we can change this incredibly unfair system - in the meantime though, this is the only option, so the best of luck raising the money you need. Hope this helps a little x

Chris Albery-Jones

Backed with £10.00 On Mar 08, 2018

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Thank you Yasmin for the kind donation. I really appreciate it. The Upright MRI has already been done. It was covered by my first round of fundraising. But now I need to find the money to get help from a neurosurgeon. That’s what this campaign is for. Xx

Jennie Smales

Posted On Feb 19, 2018

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I Truly hope you can get your MRI ASAP as I know how urgent this is for you, but also your family. Sending you love & zebra hugs x

Yasmin Smith

Backed with £5.00 On Feb 19, 2018

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Jennie Smales

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Chris Albery-Jones

Following Since Mar 08, 2018

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Yasmin Smith

Following Since Feb 19, 2018

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