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"Concerned about effects of Lipoedema"

About: General practices in Greater Glasgow & Clyde

(as a carer),

I have been to my GP countless times about my tree trunk legs. I have been told constantly that people are born with bigger legs than others. I was not born with these legs.

The problem started 6 years ago when I tried on a dress for an evening out. I was shocked beyond words and cried when I looked in the mirror. I still cry daily because they are huge and are getting bigger. I find difficulty getting in/out the bath and have to call on my daughter to help me with.

I just want a diagnosis and not constantly be fobbed of.

I have now been offered weight management which I know will do nothing to my legs whatsoever. I actually lost a friend who shouted over to me while out shopping about how huge my legs are getting. If this is what one friend thinks I worry what others think. My ankles are also huge. I am a physical wreck at the moment, my legs disgust me.

I was advised by a friend to apply for P.I.P. which I got refused..not only do I struggle with Lipoedema..I also have B.P.P.V. (Benign Positional Paroxmal Vertigo) which I struggle with weekly. I have had a number of falls, mostly indoors but have had 2 outside which resulted in, the first time, a fractured middle finger, 2 black eyes, heavy bruising all over my body.  The second time, a broken pinkie and torn muscle in my rib cage and again black eyes.

I am now in my sixties worry the older I get how much impact the Lipoedema will cause as it gets progressively worse.

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Responses

Response from Nicole McInally, Patient Experience and Public Involvement Project Manager, PEPI, NHS Greater Glasgow and Clyde nearly 2 years ago
Nicole McInally
Patient Experience and Public Involvement Project Manager, PEPI,
NHS Greater Glasgow and Clyde
Submitted on 08/06/2023 at 12:52
Published on Care Opinion at 12:52


picture of Nicole McInally

Dear Marydolly14

I am very sorry to hear about your ongoing issues you are having with your GP and that you have been left feeling fobbed off and worried about your condition.

GP practices in NHS Greater Glasgow and Clyde operate their own feedback and complaints systems and are not registered to respond to feedback received via Care Opinion. Therefore, can I suggest that you contact the Practice Manager to discuss your concerns about your condition?

If that is something you might find difficult to do there is an independent service called PASS (Patient Advice and Support Service) who can help you to give feedback, raise concerns or make a complaint about any health service, including GP practices. It is free and entirely confidential. You can contact PASS on 0800 917 2127 or visit their website at Patient Advice & Support Service | Citizens Advice Scotland (cas.org.uk).

There is a Lipoedema Support Group Home - Talk Lipoedema that you may find helpful. www.talklipoedema.org

Thank you

Nicole

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