Ongoing health issues and feeling unheard

I see my doctor on a regular basis because of ongoing health issues.  And despite my doctor referring me to several specialists and for further tests, I don’t feel like my concerns are taken seriously. I continue to live with diagnostic uncertainty and my GP  practices’ comments leave me feeling unheard.

Unhelpful comments

For example, I always find the receptionists most unhelpful.  They often seem very rude and offer unhelpful opinions.  I have been told before now, ‘What can the doctor do about a swollen hand and what can the NHS do?’  My doctor has also been known to say a similar phrase, which again is most unhelpful.

Symptom dismissal

I have several concerns which include swelling to my hand, feet, ankles, face and left eyelid.  I have had these symptoms for over seven years.  Despite seeing a dermatologist, rheumatologist, haematologist and a doctor who specialises in allergies, they have never been able to give me a diagnosis and get to the bottom of my health problem.  So that is one thing.

In addition, when these swellings flare up, I feel very hot and sweaty, I experience dizziness, feel sick and get headaches.  When I mention these symptoms to my GP they tell me that I am stressed and anxious and that dizziness is normal and nothing to worry about. I can expect to feel dizzy for the rest of my life and I need to accept that feeling dizzy during exercise is normal.  Is this normal, really?

Further tests

More recently, my GP did refer me for a 24 hour cardiac tape monitor.  I guess this was to explore further what might be going on with my health.  When I attended my appointment, the specialist informed me that I would receive the results of the test within 5 working days.  After two weeks I hadn’t received the results.  So, I phoned my GP practice.  On this occasion, the receptionist told me that I would need to speak to the GP about the results and a telephone consultation was arranged.  During this consultation, the GP read the report word for word.  It made absolutely no sense to me whatsoever.  Would you understand this:

“Sinus rhythm with frequent relatively sudden on/off sinus tachycardia. Elevated mean hr (95BPM) T wave inversion noted in channel 1 and 2 at higher rates. Rare mainly unifocal ventricular ectopic beats including three couplets and 1 – 2 cycle episodes of bigeminy ve burden three atrial premature beats.”

I have no idea what any of this means.

Medication confusion

Finally, I have also been prescribed antihistamines, thyroid medication and iron medication.  This is following some recent blood tests.  However, my doctor hasn’t given me any diagnosis or explanation for why I need to take these medications. I am non the wiser.

What do I want other healthcare professionals to learn from my experience?

  • Lack of communication:  I feel unheard and disregarded by both the receptionists and my GP.  This can leave people feeling frustrated and demoralised.  In my case I am left feeling unclear about what is going on, as something isn’t right.
  • Doctors need to listen more and see things from our perspective.
  • The need for medication should be explained and test results should be shared to us in a way that we can understand.  Simply reading from a report, without explanation isn’t helpful.
  • Using flippant and throw away comments like ‘we all have symptoms until we die’ is disrespectful, particularly when we have ongoing health issues.
  • It is hard to self-manage if we don’t know what we are self-managing.

In summary

The importance of effective communication, thorough investigation of symptoms and providing patients with clear explanations to help them understand what is happening to them are demonstrated in this story.  Areas where improvements in patient care and communication are needed to ensure a positive and supportive, therapeutic relationship, are highlighted.  Treating patients with sensitivity and dignity are paramount.

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