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Early Diagnosis of Systemic Sclerosis

Posted By Madge51

"Early Diagnosis of Systemic Sclerosis"

About: Lanarkshire Community Services

(as the patient),

NB.  This is not a complaint merely an observation that could help others.  I completely get that this is a complex condition with multiple overlaps.

There are National Guidelines available for the treatment of SSc (Systemic Sclerosis) patients.  The SRUK (Scleroderma & Raynauds UK Charity) in conjunction with BRS (British Rheumatological Society) and The Royal Free Hospital in London complied these & they are available on SRUK website.  I have provided copies to my GP practice since they stress the need for action when symptoms present in order to make those symptoms manageable and NOT allow them to become irreversible.  I am in that position now despite having brought attention to a 'disappearing muscle' almost 12 months ago & the GP couldn't find an answer to this, their words not mine.

Now that further large muscles in my abdomen have disappeared, it's all systems go with muscle biopsy, MRI & a visit to the QE in Glasgow to have the electrical activity in my muscles measured.  Levels of VIT D (Hormone that could account for a struggle with excess weight) and Thyroid levels are also being checked.  I just think it's a shame that whatever this is has an almost 12 month head start on any treatment for the likely cause, yet to be proven, Polymyositis.  My question is, how do we get GPs to read & implement the guidelines, how do we keep them up to date with diagnostic advances. 
Thank you for taking the time to read this.
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Responses

Response from Rick Edwards, Service Manager Surgical & Critical Care, University Hospital Hairmyres, NHS Lanarkshire 6 years ago
Rick Edwards
Service Manager Surgical & Critical Care, University Hospital Hairmyres,
NHS Lanarkshire

Submitted on 23/11/2017 at 13:15
Published on Care Opinion at 13:29

picture of Rick Edwards

Dear Madge51,

My apologies for the delay in getting back to you; I shared your feedback with one of our Health & Social Care Partnership Medical Directors who responds below:

Thank you for your comments and your story. I realise that the delay was frustrating for you.

Unfortunately there are many conditions which are rare and individual GPs will only see them to assess perhaps once a decade. It is then very difficult to keep up to date with all possible diseases. Fortunately, there is a system of appraisal for doctors in the UK and part of that is to create a learning plan for the next year. This plan is partly based on important new developments and partly on reflection of the past year. This helps with keeping GPs in a learning environment. Additionally, the new GP contract currently proposed is to allow GPs more time with patients with complex needs or difficult diagnostic problems.

Kind regards

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