People do not get fair treatment within healthcare services. Equality was fought for and won and it should be delivered across the healthcare services in the UK. Only it hasn’t worked out like that.
It seems the medical and psychiatry services have been playing with people’s lives all over the world, with Britain taking a leading role. Children are removed from women diagnosed with syndromes that doesn’t exist.
Children suffering from Ehlers Danlos have been removed from parents too. Lots of interference in family matters because of medical diagnoses. This is because EDS is not taken seriously in our country. It’s linked with depression and mental illness rather than the connective tissue disease it is.
There are whole families, generations, ruined by the interference of doctors telling family members that their mothers have Munchausen syndrome when usually they are suffering physical and mental trauma from childhood sexual abuse or plain old rheumatism – which is a well known medical health problem, not a mental illness.
I feel that it is time for academics and scientists to get things together and start being truthful about how arbitrary these diagnoses are. At the moment family courts in the UK are in crisis with the amount of children at risk of being removed from families who have not had proper advice on looking after their children.
It is time for patients and families to start questioning doctors. It’s becoming easy to think that some doctors keep you ill – they are not interested in making you better and you not coming back to see them. One of my favourite sayings about doctors is that they don’t get paid extra to do their jobs.
Fibromyalgia is another such diagnoses I see a lot of people diagnosed with recently, myself included – although I immediately argued it. The over made up, cosmetically inept female Shi Lankan doctor telling me that I do have fibro as well as Ehlers Danlos…in her fifteen years of experience.
I told her I have met other people with fibro and they have all over pain, including headaches which I do not suffer from. I again point out that I have had this rib pain since 2009 and it is getting worse having spread from one place under my right arm to now going across my back to under my left breast – basically in the exact place I had shingles when I was twenty years old.
I tell her I feel it could be pleural membrane infection of some sort or a breakdown of the tissue between the ribs as in common with Ehlers Danlos sufferers and of course I have the added cystic lungs. I ask again for some steroids and tell her I had just started HRT and already am feeling the benefit with my thought and emotions. I tell her it is the same pain as when I was diagnosed with pleurisy in my twenties, it just is a larger area.
The doctor completely ignores me. She declares that I do have Fibro she has decided I have it and there is not a chance that I can stop her. The fact I don’t have pain all over or headaches does not worry her at all. I realise when I get the follow up letter that this diagnosis will place me firmly back into ‘faulty pain receptor’ category in medical terms within NHS England’s treatment plans.
Having this diagnosis opens the gates for me to be offered all sorts of neurological pharma wonders like Gabapentin and Pregabapentin…and lots of other mind altering drugs which I have already done thankfully so won’t be tricked into again. I have mental health issues and it’s hard enough to keep a hold of my emotions.
However, it does make it hard to claim benefits. It could be seen as you could work – as you have no reason for your pain. Thankfully I have my paperwork from previous years proving this is not the case for me but how many other people keep all their medical letters?
Chronic Fatigue Syndrome is another umbrella term for all over pain with no reason – however, full test aren’t done to exclude other things…these are arbitrary decisions that the doctors make based on the latest guidance from NHS England rather than actual medical knowledge.
Symptoms of all over pain. Apparently a ‘faulty pain receptor’. It is linked with mental health as there is no reason for the pain – no reason for the pain. Many patients find themselves in ‘well being’ classes rather than any real treatment.
Let this simple statement sink in, apparently someone is experiencing pain for no reason with Fibromyalgia. However, the doctor will supply pain killers and other drugs for this condition and more importantly it is linked with depression so antidepressants are often also offered as course of treatment.
For me it is not the correct diagnosis. I don’t have muscle pain. I have joint pain. I have nodules on my hands from my swollen joints. I have a huge amount of pain around my rib cage, the pain radiates from the tissue between my ribs. I don’t get headaches. I do faint and suffer from fatigue. I also have Bullous Lung Disease, around 25% of lung function left and mitral valve prolapse and thickening of the left ventricle of the heart.
I don’t have a faulty pain signal – I am in pain. I also have large mass around my bladder from the TVT which is likely to be causing an auto immune response in me as I have been diagnosed with interstitial cystitis for last fifteen years which is also very painful – oh and I have endometriosis and a faulty jaw.
I almost faint every time I fart from the pain caused from the Stapled Hemmoroidoplexy and the TVT wrapped around my bladder. I don’t just have Fibro. I am in pain.
I complained about the diagnoses at the time and afterwards I phoned and complained to the clinic. Nothing happened. I thought I’d argued and proved my case but no. Now her diagnoses has trumped all my other diagnoses, including my hypermobile jaw which dislocates regularly and my stomach problems including peptic ulcers and my extremely sensitive, painful, ears.
But no, it’s none of those things I am suffering from – all the other doctors, scans and tests are wrong. According to this new doctor I have a Vitamin D deficiency and Fibromyalgia. When I looked up my results I found that my blood levels weren’t that deficient in vit D according to NHS guidelines. I had a raised CRP level which ought to be investigated but she hadn’t pointed this out.
It all falls on uncaring and corrupt ears. Now when I get taken into hospital they look on the system they see depression and fibromyalgia – it doesn’t help when you do actually have mental health problems too. So I am ignored on medical grounds because of this diagnoses that is ill founded. I am one of many being treated in this manner, it means they can officially ignore me.
Basically it’s one service for some a great service whilst another gets treated appallingly. One person comes in walking with chest pains he is taken to cardio and hooked up to the monitors. Another comes in with chest pain and is asked if she is anxious and why she thinks she needs to be there…
These common misconceptions about men and women serve no purpose other than to deprive women of healthcare services and give men a false belief that they are better. The most common killer of women over 50 in the UK is heart disease.
It’s not cancer or drinking alcohol, it’s heart disease. We need to start demanding to be taken seriously and not be tarnished with these old outdated medical opinions that only serve some interests.
If you use the NHS England’s BMI checker you will not get the same advice regarding health if you are obese and white/other as you would if you were of Indian or Black African descent. We have to stop treating people according to their ethnicity, as race is not a defining characteristic of health.
We all have to pay into the system when we work. We have the right to treatment. When people have complex medical history, this should be taken into account, not just the last doctor that was seen. This doctors decision to diagnose Fibro assured a total denial of service when it happened to me as doctors in AAU refused to look past the last diagnosis.
The medical healthcare systems such as NHS England and pharma companies and hospitals must treat us all the same regardless of race or gender. The inequality is becoming too much. We need to start pulling back against the move towards the dark ages.
No to hysteria, no to new Munchausen syndrome diagnosis and real treatment for people in pain. It’s time to treat anyone in pain – regardless of gender, race, age, disability, colour or nationality. We are all humans.