Author Topic: NAC study on patient data and NHS services usage  (Read 5996 times)

Miriam Vered

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NAC study on patient data and NHS services usage
« on: June 12, 2017, 10:35:18 am »
I've been asked to post the following information and poster about a planned new study at the NAC:

 The NAC doctors are planning a study to understand amyloidosis patients usage of NHS services with the aim to improve diagnosis and subsequent treatment of patients with amyloidosis. This project involves using some medical information from NAC patients, to build a database to be used in the research. All personal details such as name, address and telephone number would be removed by hospital staff before being included in the database. A patient information poster for the study is attached.

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: NAC study on patient data and NHS services usage
« Reply #1 on: June 13, 2017, 12:20:55 pm »
Thank you Miriam for informing us of this potentially very useful and informative study for the mutual benefit of all patients and NAC Drs and all our NHS Drs locally  involved in our care.

What an original and very worthwhile idea by the NAC. Our NAC team never ceases to impress. The NAC is forever innovative and continually working very hard indeed to reach out to increase amyloidosis awareness amongst all medical professionals across the U.K. to promote earlier suspicion or diagnosis of amyloidosis at local level. The way in which patients use NHS services locally is most important in complementing the work of our NAC Drs.

My case is very rare even "unprecedented", I have been frequently told so I hope the study will include oral amyloidosis patients rare tho' they may be. Whilst my form of the disease is non threatening, without chemotherapy it could have progressed to internal organs and indeed could still do so. There is much less interest in oral amyloidosis yet in my case my suffering is chronic. I was diagnosed in 04 but not treated until 08/09. The chemotherapy brought remission 2.05 years later. During that time amyloid continued to deposit. I knew this because I could see new nodules of amyloid throughout my skin and mouth and my chronically damaged nerves in my hard palate were worsening to an intolerable level. I saw numerous Oral Consultants both locally and in London but none was able or interested in trying to help relieve the symptoms which were seriously affecting my quality of life and continue to do so. My search for symptom relief continues to this day. The best thing after all these years is that there is interest locally at last in my unusual case. It took until 2015 to find a Consultant interested in chronic neuropathic conditions. In 2016 he referred me an NHS Oral Consultant locally who has previously cared for 5 patients with oral amyloidosis. He was always there, so  he was astonished as I was that I had never been referred to him until 2016. Of the 12 Oral specialists I have seen since 2004, he is the one and only interested in oral amyloidosis and is seriously trying to help. He is so interested in my rare oral amyloidosis that he has included a section about my manifestation of oral amyloidosis in a new medical anatomy book (yet to be published) to which he has contributed a chapter.
« Last Edit: June 13, 2017, 06:36:59 pm by patpinchin »
Pat

Miriam Vered

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Re: NAC study on patient data and NHS services usage
« Reply #2 on: June 13, 2017, 05:57:30 pm »
The study will include data from all NAC patients, (with all identifying details removed) unless they choose to opt out.

patpinchin

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Re: NAC study on patient data and NHS services usage
« Reply #3 on: June 14, 2017, 09:20:27 am »
I am delighted about this study and most definitely want to be involved.
Pat

Mhelenx

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  • Localised paranasal amyloidosis, systemic AL type
  • Reason for joining: Localised paranasal AL Amyloidosis, patient
  • Diagnosed: 2005
Re: NAC study on patient data and NHS services usage
« Reply #4 on: June 14, 2017, 10:40:52 am »
I am happy for my details to be used for the research. More people will definitely benefit long term from the study. From my experience, as soon as some medical practitioners hear the word Amyloidosis mention, it's normally "what do we do now?". Hopefully, the more information available then the easier it becomes to identify and treat patients.
MhelenX✨

diddy

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  • Reason for joining: AFIB patient
  • Diagnosed: Amyloidosis 2 December 2016 . AFib January 2017
Re: NAC study on patient data and NHS services usage
« Reply #5 on: June 17, 2017, 08:14:11 pm »
I just saw my local dr on Thursday to check out my ears because of balance problems. she had just returned from a kidney conference / training day where she told me that, upon discussion of protein problems in urine, she proudly put up her hand & explained to all about her AFib patient (me).

Diddy

SANDYJ

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  • Reason for joining: Patient -AL Amyloidosis
  • Diagnosed: May 2012
Re: NAC study on patient data and NHS services usage
« Reply #6 on: June 21, 2017, 02:31:53 pm »
Hi Marian,  I am happy for any of my details to be used for the above study.  I would be more than pleased to assist I any way that I can to help conquer this insidious disease. 

jybabba

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  • Reason for joining: AL amyloidosis patient
  • Diagnosed: 23rd Dec 2016
Re: NAC study on patient data and NHS services usage
« Reply #7 on: June 28, 2017, 11:48:11 am »
I am also happy for my details to be used .

Pat

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  • Reason for joining: Hereditary ATTR H90D Diagnosis
  • Diagnosed: May 2017
Re: NAC study on patient data and NHS services usage
« Reply #8 on: July 16, 2017, 11:30:07 am »
Hello Pat,

I have recently been diagnosed with hereditary TTR and am 'unusual' in that I have deposits in other parts of my body (other than just my heart). 
I have been suffering with jaw issues for many years and my local MaxFax team are at a loss as to the cause.  The NAC have said they cannot rule out amyloid deposits in my jaw and I wonder if you'd be happy to share the name of the oral consultant/ hospital who has been dealing with you so that I can try to get a referral to him (or her).

Many thanks,

Pat