Posted by Annies (as ),
I was diagnosed with Fibromyalgia in 2015 and later in 2016 l requested rheumatology referral due to multiple joint pains and positive SSA Anti Ro antibody positive which indicates autoimmune condition.My GP wasn't very happy as I had done all tests privately. NHS tests also confirmed same results but They only diagnosed osteoarthritis in both hands and both knees. Up until now I'm having devastating neck,shoulders, elbow and wrist,spine and hip pain, sprains and struggling to do daily activities.But every follow up rheumatology appointments were with different consultants and each of them had different opinions which causes a lot of stress for me. I was told that Anti Ro antibody positive is Life long and l need to be monitored for systemic illness regularly.More than that,l was never given a proper diagnosis for osteoarthritis affected body parts.l was given a very good consultant upon request after fibromyalgia support group's feedback but he no longer work in trust.
The person l saw instead never checked my past medical history and even blamed that it's too early age to fall ill,l was overweight, diabetic etc. In fact it was an emergency appointment in Lincoln with my 4 month old Baby as l was struggling to carry her and hold her,me and my husband was so upset instead of feeling supported after that long journey. They were even seemed using mobile at the time which made me so let down.
Further appointments with this member of staff was even worse. Latest was in August which l had to confront because of the communication and l had to mention about their using mobile, and I was made to feel guilty by them saying they had a very ill relative .The Nurse assistant in the room also seemed nodding head indicating that l was a difficult patient.
After this consultation l received two letters dated two days in July which seemed to me that they already planned my discharge even before consultation day which two weeks later... letters also have different result for vit D level. l worked as a Nurse till recently and l appreciate all the hard work and busy times in NHS but l felt kind of afraid of being treated differently because l was assertive.
What they didn't realise before they class me as noncompliant patient,l have gastritis (confirmed by endoscopy) and IBS and l shouldn't be even prescribed NSAID as pain killers... After l raised concern they jumped into option for shoulder injection on RT side,but my symptoms are worse on my both shoulders,neck,spine,hips and knees...also my elbow and wrist are affected.. they must confirm joints affected by osteoarthritis and if it is then l should be having specific exercise not to cause further damage...l have spinal stenosis in neck which was ignored by GP and rheumatology and l have symptoms of severe neck pain and numbness,all they say is my symptoms are normal wear and tear... but l suffer 24 hours pain, struggle lying down,l feel they ignore my symptoms as I look normal to them just in that day of appointment which once in 4-5 months...l felt like a football being kicked by GP and rheumatology and finally l avoid going to them. Infact l felt like taking my own life story, writing it up and passing it to media so that no one else will suffer.
I was sent another letter later in August saying they discharged me because two ENA profile showed negative anti Ro antibody but as a Nurse l know all the test, ENA profile wasn't even done recently and as l mentioned l was told it stays permanently in body... l worry about my children and if something happens to me out of stress... .l had to explain about one of my relative's misdiagnosis of cancer lung as COPD and this staff member treats me as psychosomatic patient...
l have worked for NHS and private sector and l have seen goods and bads. lts true that l lost trust in services from my own patient experience. l posted in care opinion as l was asked feedback after my appointments, my only aims are, l need proper and non judgemental care and these kind of bad attitude and communication to patient should not be repeated to anyone specially vulnerable patients in community. As a former Nurse its my duty to raise concerns report significant events as per NMC guide lines.