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"Autoimmune Conditions"

About: John Radcliffe Hospital / Endocrinology John Radcliffe Hospital / Gastroenterology Poplar Grove Practice Stoke Mandeville Hospital / Gastroenterology Stoke Mandeville Hospital / Rheumatology Wycombe Hospital / Endocrinology Wycombe Hospital / Gastroenterology Wycombe Hospital / Rheumatology

(as the patient),

I'd like to comment on Autoimmune Conditions and holistic and integrated care.

I have 8 autoimmune conditions/diseases and visit various consultants and, most of the time just get on with managing them myself. There appears to me to be a complete lack of an integrated approach in managing these conditions and, a lack of understanding from different specialities on how one condition, for example, Coeliac disease affects another condition eg Thyroid eye disease or inflammatory bowel disease. All of which I have, amongst others.

I feel disconnected from the care I receive as each speciality appears not to have the knowledge or desire to recognise, or take an holistic approach to treatment. And yet all of the autoimmune conditions I have appear to be under the same umbrella and, are often seen together or perhaps triggered by similar genes. I'd go as far as saying that perhaps some could be avoided if awareness and a holistic approach had been taken.

Pretty soul destroying being seen as separate little parts and yet they are all connected to each other. I'd love to see a more innovative approach to early suspicion, recognition and treatment for these conditions. Some of these conditions have taken years to diagnose. Much more genetic testing is surely the way forward!

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Responses

Response from Julie Moore, Patient Relations Manager, Buckinghamshire Healthcare NHS Trust 15 months ago
Julie Moore
Patient Relations Manager,
Buckinghamshire Healthcare NHS Trust
Submitted on 06/03/2024 at 13:30
Published on Care Opinion at 13:30


We are sorry to hear about your experience.

Should you wish to discuss your concerns further, please contact our PALS team.

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