“It has been my sad experience throughout my career to find that whereas doctors tend to close ranks and look after each other during times of trouble, nurses act in completely the opposite way”. from Life in the NHS, an excellent nurse written blog.

The Parliamentary Health Committee session on the “new” consultants contract within the NHS grabbed my attention on BBC Parliament as I scanned the TV channels today. What was being said shockingly backs what I have written here about the fault lines within the National Health Service.

The Chairman of the committee quoted a National Audit Office report to the committe “Consultants have power without accountability and managers have accountability without power”. Mr Williams MP quoted another report saying “Consultants have told us that they have a natural tendancy to support each other”. Yes, it’s called “Doctors Etiquette” - and it regularly kills people.

“Power without accountability” is exactly why what I have written below is being allowed to happen - not just to me but throughout the health service. You may find it hard to believe but that does not make a word of it untrue. “Consultants have power without accountability”. Read that again - it is frightening. Earlier I wrote “It is time doctors stopped protecting each other and pretending they are godlike, admitted their faults and engaged patients as equals. Then physical symptoms might not be ignored and lives might not needlessly be ruined.” This is the sort of damage that power without accountability leads to.

From “Humanitarian Plea: Can You Or Someone You Know Help?”, “The body of evidence that I am now being deliberately denied medical care in the UK is now overwhelming. Perhaps this is to protect reputations of these doctors who early misdiagnosed my situation without proper investigation, perhaps the reasons are more nefarious. I do not say this lightly and have documented evidence”. This is a situation that could only develop under a regime where consultants have “Power with no accountability”.

I was raped from infancy through to age twelve by multiple abusers. It wasn’t nice. It hurt me psychologically and physically.  I have appropriate psychological support after a long battle. There has, however, been an ongoing failure to deal with the physical damage my body sustained in an appropriate way. Initially this was probably due to misunderstanding and an assumption that my problems were principally psychological. That simply no longer appears to be the case.

In discussion with my friend who is an Osteopath, we have arrived at the conclusion that there is quite probably a central nervous system issue. I occasionally enjoy a sporadic and progressive return of sensation from the neck down into my upper torso. I have no control of many of the muscles in my pelvis. I have suffered lifelong urinary incontinence attributed to the problems with my neck. My anal sphincter has been shown to be “stretched” and in part made of scar tissue. My rectum is internally prolapsed. The muscles in the back of my body have progressively failed over the last three years, starting with the right side, and progressing to the left. My diaphragm does not significantly displace at any stage of respiration. My theory/experience is that it the right hemisphere is paradoxically enervated in part and constantly drawn up to compensate for the failure of my pelvic floor - it effectively reduces the pressure in my abdomen - and this has been borne out by electromagnetic phrenic nerve testing.

I want to recount an experience from May 2004 that may shed light on what is going on, what I have just written. I had been concentrating my physical recovery work on strengthening and balancing muscles in my pelvis and back but shifted my focus somewhat to how I moved my neck. One day I was being very careful with the movements of my neck and something at the top of my neck clicked into place. My head rebalanced and twisted round to accommodate. The next thing I knew, as I stood before the mirror cleaning my teeth, a whole bunch of muscles in my pelvis started working. First I think was the urinary sphincter - I felt it close an unusual and unfamiliar experience. Then the anal sphincter and rectum - I felt my rectum uncurl up inside of me – it has now been shown that my rectum is prolapsed internally. Then muscles in the back of my hips and legs started working. My hips rotated a little and a muscle on the left of my spine seemed to relax, lengthening my lumbar spine, and my abdominal contents were pushed up inside of me as my pelvic floor and some other muscles in my pelvis started working. As I turned round, a muscle I had never before felt contract sucked in my belly, and I felt my lumbar spine supported. My friend the Osteopath explained to me this might have been the transverse abdominus as that muscle is co-enervated with the pelvic floor. I had never felt that sensation and it was amazing. Within half an hour the muscles behind my shoulders that were not working started doing so, the muscles behind the middle of my spine in my back engaged and I was standing two inches taller than I had been all my adult life.

This was all a shock to me. I had no Idea what I had done. I could walk properly, in a balanced fashion, and my body felt amazing. I could breathe properly and had never known that I was not doing so. I was two inches taller. I never realised before that people didn’t have to fight their own legs to walk, which is how it feels for me. As I moved to sit in a chair my body collapsed back and all the gains of that morning were immediately lost. My body corkscrewed back down into its habitual position. My feeling is that something somewhere was strong enough for me to stand but not for me to sit – or perhaps that some of those muscles that had just started working relapsed into their old patterns setting off the collapse as I tried
to sit.

I realised afterwards that this physical experience meant my body had been desperately hurt by the abuse and made the link to former physical problems.

I was unable to recreate this situation – I was unsure what I had even done. Shortly afterwards, perhaps with mistaken attempts to do so, I sustained an injury to my neck and lumbar spine. These structures were already dysfunctional as a result of the compensatory pattern to the organic damage sustained in the abuse. One morning on stepping out of the shower I experienced a spasm that started in my pelvis and ricocheted all the way up my spine. Some muscles behind my right shoulder stopped working immediately and I felt very unbalanced. Since that time my body has progressively decayed to the point where almost all the muscles of my back have failed and atrophied as I have progressively lost control. This started with the back right side of my body but has progressed to the left side as time has ticked by. My neck and pelvis are shot. My sacrum has curled into a ball and my lumbar sacral joint has collapsed back on itself, whilst from its base my spine is in kyphosis to the base of my neck. This has become more pronounced as my shoulders have collapsed over my chest as the muscles in my back have failed. Walking, sitting, standing, sleeping – everything is now painful and increasingly so.

In October 2004, my doctor referred me to The Royal National Orthopaedic Hospital. The first doctor I saw there undertook a very thorough examination (2 hours) and came up with a care plan: I would be referred to a neuro-urologist, an appropriate specialist to deal with my colo-rectal problems and when these reports were in I would be admitted for intensive inpatient physiotherapy. He told me I could expect to be in hospital for several months.

Unfortunately the person to whom I was referred to investigate my colo-rectal problems was a Gastroenterologist. She conducted an extremely painful rectal exam, told me “everything is quite fine up there but you will never recover”, “we must get you to stop worrying about your body so much” and “you’ve been reading the anatomy books haven’t you” - complete with wagging finger in the air. A year later when my GP re-referred me as she had become certain something had been missed, this person admitted she had been acting outside of her specialty and could not further any more investigations. She had also acted against the psychiatric advice in her hands that my physical problems were not a psychological manifestation but most likely due to organic damage from the abuse. This person formed the opinion my problems were psychological. She was a very famous doctor and current president of the British Medical Association. Her colleagues have now reluctantly proved some of the damage to my body but it has been like getting blood out of a stone. The first thing said to me by the person who took over was “we don’t normally do anything for people like you”.

I went back to the Orthopaedic Hospital and the boss of the unit I had been referred to saw me this time. This man, Joseph Cowan, basically told me he did not believe a word I said and that my attitude needed to improve. He said he might admit me to his unit if my attitude did improve. I asked for a second opinion, which he organised. I then complained about the way this man had treated me and he wrote to the other doctors I had been referred to asking them not to see me as I had complained about him. This is against the General Medical Council’s guidelines and clearly highly unethical. I have since found out under freedom of information laws that the maximum time from GP referral to admission to doctor Cowans unit is 21 weeks. He kept me out of his unit on spurious, manipulative unprofessional grounds for a year whilst my physical health deteriorated and then ensured they were not investigated thoroughly when those investigations started proving useful to me and damaging to him.

The body of evidence that I am now being deliberately denied medical care in the UK is now overwhelming. Perhaps this is to protect reputations of these doctors who early misdiagnosed my situation without proper investigation, perhaps the reasons are more nefarious. I do not say this lightly and have documented evidence. This has been allowed to progress to the point where frankly it threatens my life. At the current time, despite my knowing quite clearly much of what is wrong, there is no overall understanding of my situation from the doctors, no care plan or treatment in prospect, after three years of reluctant investigations. I am having to fight tooth and nail for needed investigations and spend all my money and now go into debt to pay for them privately.

The latest manifestation of this is that when I see a doctor now they say “even if we discover what is wrong with you we don’t think there is anything we can do to help”. Talk about “putting the cart before the horse”. How can you know you won’t be able to help in the future when you admit you don’t know what is wrong now? This is seemingly an attempt to evade British negligence laws, which demand some intervention must have been possible before negligence can be proved. The doctors here don’t seem to understand I don’t want to prove negligence - I want a body that works, or is at least not decaying further. My main concern and that of my family, friends and have the team supporting me psychologically is my physical survival.

If you know someone who can help, a philanthropist who might med-evac me out of this medical backwater,  a media person who can cast the spotlight of publicity on this case, or just friends who might know one of these people, please, do it.

“Somatization disorder is a chronic condition in which there are numerous physical complaints. These complaints can last for years, and result in substantial impairment. The physical symptoms are caused by psychological problems, and no underlying physical problem can be identified.”

“A conversion disorder is a rare form of mental illness in which a person has physical symptoms that no medical condition can explain. The person is not “faking,” and the symptoms do not appear to be under the person’s conscious control. The symptoms, such as a loss of muscle control, blindness, deafness, seizures or even unconsciousness, can cause significant distress.”

The doctors have got it wrong. Just because they are unable to identify physical causes they ascribe the cause to psychology. This kind of barbaric thinking is what has damaged my body so much. The actual psychological problem lays in the doctors mind, unable to admit “I don’t understand” they blame the patient. This is another form of original sin.

The fact of the matter is that extreme psychological problems are almost always rooted in extreme physical trauma which is, or is perceived as, life threatening: Childhood sexual abuse and physical abuse. These conditions are indeed “psychosomatic” but medicine teaches doctors the wrong meaning of this word. Psychosomatic means “relating to mind and body”.

The disorders described above, if they really existed, fall into the category of “psychogenetic” disorders, which means problems originating in the mind. The problem here stems from the philosophical ideas of Renes Descartes - who tried to separate mind and body into different universes - and Freud - who first siad “my patients were sexually interfered with when they were children and show improved functioning when they talk about it”, but later said “my patients have really vivid imaginations and are kind of fu**ed up”.

Descartes ignored the fact that mind and matter can not be in entirely separate fields of existence if they are to interact, and Freud, living in Victorian Austria was quick to turn tail as his theories were socially unnacceptable to the Vienniese aristocracy who were his clients. Thus we live in a world where Descartes faulted phillosophy and Freud’s faulted psychology prevail.

In this world, doctors like to ascribe things they don’t comprehend to the psychology of the patient. This is a really easy way of not admitting their own limitations. We all know the sort of people who went to medical college. Not the brightest sparks in town, usually, but driven by the demands of their parents to succeed. they get the school grades to get into med school and then study hard to pass. They are people who need to work to understand things. They are people who, when presented with something new, something to be discovered rather than learned, fail. Not all are like that. Yet that and the career structure means British Medicine is backwards.

I am going to make another sweeping statement I can not prove but know is true. Most people who are given the label of Somatization disorder or Conversion disorder were sexually or physically abused as children. They were physically injured at the same time they endured the stress of believing their lives would end. Without “shaking off” the psychological harm and having their physical injuries dealt with appropriately they grow up compensating around their injuries. Later in llife their bodies experience multiple problems associated with these untreated injuries and the compensatory patterns they employ to survive them.

These physical issues are tied up with the psychological issues these patients face. But the link is not:

Psychological Issues   –cause–>    Physical Issues

i.e. it is not “psychogenetic” (mind causing physical problems)

The link is:

Rape and Abuse        –cause–>      Physical and Psychological Issues

i.e. it is “psychosomatic” (real physical and psychological problems with the same genesis, or origin, in abuse)

Doctors are as delusional as the average person regarding the extent of and effects of chiildhood abuse. Many are in denial. Many were abused. Some are abusers. It is time doctors stopped protecting each other and pretending they are godlike, admitted their faults and engaged patients as equals. Then physical symptoms might not be ignored and lives might not needlessly be ruined. 

Last week I returned from California with 3D scans of my body as I knew I was getting nowhere fast with the NHS and wanted to help them along with a little evidence.

Unfortunately the spinal surgeon I saw last week claimed he was unable to open the disk on any of the computers in the department so they couldn’t look at them Instead they took three X rays .. an Axial and Lateral Plane whole spine and one of my pelvis. I was told all is fine.

In fact the twists and turns (scoliosis) in my spine are worsening noticeably very quickly as all the supporting muscular structures progressively fail. This image shows nicely what is happening in one part of my spine, the Thoracic - i.e relating to chest.

Interestingly you can also see from this why my spine is so stressed and all over the place … my shoulder blades are in the wrong place as all the muscles in the back of my body have stopped working bit by bit. My chest has collapsed as my shoulders have collapsed over the front of my chest.

Oh crumbs! I’m losing control of my neck. It has never functioned right but has deteriorated badly in recent weeks. Now, corkscrewed down on itself, doubled back and rolled round to one side, it is starting to hurt a lot.

I’ve smelled of faeces for a few months now as control of everything below my neck has gotten worse and worse and my pelvis is most badly effected. On that score there was good news. The tests kindly done by the Prof I am under at the hospital have proven worthwhile and confirmed what I wrote to him in September about my rectum being prolapsed. I am hoping he has good news for me about the next steps in working out what is wrong or what can be done to help.

On the other hand unfortunately, the MRI scans done this week show some features of what is wrong but seem to miss any good detail in the key areas. The sacrum, which has collapsed, is missing enitirey, god bless their cotton socks. NO doubt the report will be along the lines of  ”Congrats Mr Buddhist all is good and well”, or something of the sort.

I did tell them they wouldn’t understand what is wrong with me without doing three-dimensional scans and they agreed to do that. When I saw they had booked a routine 2D MRI I was gobsmacked. And now based on this they will perhaps, firstly, misunderstand what is wrong with me, and, secondly, use it as reason to continue the policy of doing nothing that is slowly killing me.

To top it all, I learned that tucked away in the basement they have one of those fancy 30 second full body scanners used for all the trauma victims. With that they could have looked at my pelvis in 3d avoiding all the intrusive, yet fruitful, tests I have faced, look at my full skeleton in 3D and get the structural relationship of all these things clear.

Patients do sometimes know what is wrong with them and doctors do sometimes get it wrong. Patients need to be heard and many doctors need to get their noses out of the career gutter.

* in a new policy I have decided not to name and shame hospitals any longer.

Mortido and Libido, Freud said, ruled our lives. These ad-hoc structures are but points on a scale, limits within which one finds all aspects of self. Habits of perception and being dictate patterns that assume control. Parts of a whole, a system of control. A little commitee.

3D urgent scans promised 2D Routine booked.

A promised test not undertaken then reluctantly agreed after being told even if it shows something there is probably nothing they “can do”.

Scans which reveal no pathology in the UK. Read by a Russian doctor he can see the causal distortions in the neck that have evaded three scan attempts in the UK.

From these causes he deduces the problems with my body accurately, specifically those in the pelvis, hips, lower back and shoulder and neck.

Read by an American doctor they reveal the same thing and, he adds, the greatest danger is that I swallow my tongue.

Some people wonder what is going on. I soldier on. Eventually I will meet an honourable honest and capable surgeon who can understand what is happening and what needs to be done. Not that I am suggesting all those I have met to date are either dishonest or dishonorouable. That is far from the case. But understanding what is happening isn’t happening.