Last update 11th. January 2005
The Health Care Commission
103-105 Bunhill Row
London EC 1 8TG
26th June 2004
Dear Lea Pickerill.
After 11 years of chronic pain. of asking for help and advice from my GP and also The Royal Free Hospital. I was given a diagnosis of Fibromyalgia CFS. It was clear to me that I would not receive any treatment through the NHS. The diagnosis enabled me to research my condition - very depressing reading The ARC booklet that I was given by the Rheumatologist who diagnosed me says that there is no cure. The Royal Free told me that there was no cure. They are wrong. The reason there is no cure for this disabling illness [it is not a disease] is that The Royal College of Physicians Service Considerations policy often treats these conditions on a 'one stop' basis. However, the private treatment that I found is mainstream within the NHS and is only offered to the selected few and those with private health insurance. The mainstream Rheumatalogical discipline is SPORTS MEDICINE coupled with sports injury clinics. I have been quickly cured of these NHS manufactured illnesses by mainstream physiotherapy. A combination of physical medicine, physiotherapy and Pilates exercises. Together with hvdrotherapy, exercising in a warm pool, steam room and sauna. My treatment was painless, quick, simple and cheap. Cheaper than giving birth, cheaper than a hip replacement.
The correct diagnosis for me, I am not the only one, is Repetitive Strain Injury coupled with ME. [ME brought on by chicken pox in 1998, prior to the conception of my second child, this combination of pain and a virus, and no help or treatment led to my disability.]
The Chief Medical Officer's report for CFS/ME sites Sports Physiotherapy as best practice treatment, however Clinical Excellence for this condition is Sports Medicine. Had I not found this treatment, my life would still be severely compromised and my visits to the hospital and GP more frequent. I would not have received any hands on Physical therapy. Had I been adequately and appropriately treated 11 years ago, I would not have suffered the torture and isolation of FMS, CFS/ME.
There are estimated to be 4,000,000 people in this country with FMS/CFS/ME/RSI, lives are being ruined because of clinical arrogance and short sighted politics, giving GP's and clinicians the authority to play god and the devil with peoples lives.
My physical pain was taken away from me, extremely quickly, which was my fantasy come true. The hardest part of my full recovery has been coming to terms with the perception and treatment of me by the medical profession. I know now that I was regarded as a 2nd class citizen, that my battle to get a diagnosis over the last 6-11 years was in part due to ignorance, but largely due to prejudice and discrimination and the schizophrenic clinical medical state of mind. My social standing as a mother of 2 small boys was not valued. My life was progressively eroded, damaging, not only my life, but my children's lives, my partners life and our relationship with our world. We lived a life of drudgery and chaos, a fake normality.
One other point I would like to make is that three years ago I was seen by a Senior Clinical Physiotherapist whose analysis of my problem was postural abnormalities due to stress. She, for whatever reason, ignored my skeletal problems. I had, amongst other deformities of my spine, a twisted sacroiliac joint and lower lumbar spine. My treatment for this was acupuncture, which is palliative and if the pain clinic clinician had not forgotten to follow my treatment through, he would have referred me to a psychiatrist. Had I been given any diagnosis, it would have been the inaccurate term of CFS. The insidious inference here is that the origin of my pain was all in my mind, i.e. that I was neurotic. No hands on physical therapy is given to people with chronic muscular skeletal pain, this is policy. Why was I not told? People with FMS /CFS and ME are given graded pacing and graded activity by physiotherapists, but no hands on physical therapy is given. Cognitive behaviour therapy is also offered.
Fibromyalgia is the 3rd most common diagnosis given by Rheumatologists today, of the estimated 500,000 to 750,000 people suffering. 95-98% are women.There are physiological differences between men and women. Two thirds of the estimated 250,000 people with ME are also women.
I believe that there will be an increase in the numbers of people given the dustbin diagnosis of CFS and a decrease in the numbers of people given the diagnosis of FMS, as growing political pressure from the All Party Parliamentary Group for Fibromyalgia, the BMA and patients associations gets stronger. Many others will be given an inaccurate muscular/skeletal analysis and the figures for FMS will be seen to drop. The irony of this appalling state is that Best Practice is already in the mainstream and taught in the mainstream. The problem lies with clinical medical hierarchy, physiotherapists are regarded as technicians, their skills are compromised by policy, and their practice is seen as an art, not a science.
The Department of Health's policy on Fibromyalgia differs from the Royal College of Physicians service considerations policy. The Department of Health says that we have access to a wide range of hospital services and recommends physical therapy. I was referred for physiotherapy, however access was denied.
The road to regaining my confidence and self respect has taken a lot longer that my treatment for RSI and ME, or Athletes Overtraining Syndrome, now known as Under Recovery Syndrome. I was finally released from solitary confinement and torture, by a consultant who believes in the simple ethic of "do as you would be done by", my pain is no longer subjective.
I would appreciate an acknowledgement of this letter and the issues I have raised and would like this controversial subject to be addressed in the wider public arena.
Jane tells us she sent this, with a video of her treatment, to the Expert Patient program via the Health Commission "My letter has not been acknowledged."
The Royal Homeopathic Hospital has recognised her expertise and has asked her to talk to their Doctors. Meanwhile Camden PCT PPIF are not responding to her enquiries. PPIFO hopes you Forum members out there are noticing this! A condition of membership of PPIFO should be prompt acknowledgement of all enquiries. A losing letters culture will not be tolerated. FSOs please note.
Contact United Kingdom Association of Doctors in Sport. An exercise prescription may be provided to patients wanting to improve their health and increase their fitness.
My serious health problems were ignored by Hampstead Group Practice and The Royal Free Hospital, until 13th May 2003 when Dr Brough at the Royal Free Hospital asked me, 'If I could have one thing what would it be?' They left me in pain for an extreme length of time, they did not provide with the service I needed, the appropriate treatment of physiotherapy, a diagnosis or advice. When I was diagnosed no treatment was offered to me, if I had not found treatment for myself, I would still be suffering from Fibromyalgia CFS.
My problems started at a traumatic time in my life. I sustained a small muscle strain injury that did not heal, and was not corrected or the origin found by a NHS physiotherapist. I was left in pain. Up until this time in my life I had not suffered any other physical pain. I had been exceptionally healthy dynamic and fit.
Shortly after I had injured myself my father was diagnosed with cancer, the cancer had progressed to far for any treatment to be given. I had been awarded a Bursary from the Photographers Gallery in Cambridge and was putting together my Post Graduate show for Central St Martins School of Art and Design. The pain was getting worse on the right hand side, although I was swimming regularly. My father died just before Christmas 1992, my mother died suddenly in March 1993. Matthew. my first son was conceived two months after my mother had died. The pain spread throughout my pelvis, lower back and legs. which got progressively worse as I struggled with the care of my first son, Matthew. I reported this progression of pain to my GP, many times. I had no pain in my upper body, although the physical demands made on my body by being a mother of a growing baby were great. I was getting overly exhausted by the pain, I was susceptible to viruses and was not able to recover from them. I had severe Chicken Pox, which I caught from my son Matthew, prior to the conception of my second son, Henry. Shortly after his birth in March 1998, ME/CFS took hold of my body, coupled with Repetitive Strain Injury through out.
I did not understand what was happening to me, I did know however that either the pain had to go or I had to sleep. I could not lift Henry without excruciating pain in my hips and gradually and progressively the burning pain within my muscles, became more intense and widespread. My body distorted as I struggled to find a comfortable position, it never did. Some of my muscles were very tense and others were weak. I had shooting chest pains mainly on the right hand side and my right arm was numb and tingled I was unable to breathe.
However much I tried to tell people the severity of pain I was in, it was hopeless. I was isolated in torture. Over time my symptoms worsened, I had no respite from them and I know now how severely disabled I was because I do not suffer any longer from pain or fatigue. I do not understand why I was left to suffer in extreme by my local NHS carers. I feel persecuted and victimized by them.
My brain was affected, my speech also. I lived with a permanent headache, pain is very noisy and clouded my mind, I could not speak, I could not form sentences or hold a conversation, and I would forget what I was talking about and not be able to follow what was being said to me. To even speak was an extreme effort. I could not follow what my children were saying to me or engage in their life. I would look at them with a blank expression and twisted smile that I hoped conveyed the love I felt for them. They both suffered. The most formative and important years of their lives were compromised by their mothers unnecessary disability. I was very unhappy to give them so little. I wanted to be a good role model to them. but I feel I have failed.
I was not able to write a postcard. read a newspaper or book. even watch a film. I was a photographer and I used to carry my camera with me wherever I went, I was not able to do this. the camera felt so heavy. it caused me too much pain. I had what I now know is TMJ, the muscles in my face were permanently locked in imbalanced tension. which distorted my skull. and the muscles behind my y eyes, I could not see properly. Bright lights made my eyes sore.
I used to love listening to music, but the noise hurt too much. I was an excellent dancer. I did not dance. I did not play music or dance with my children. I was a very good tennis player and would have loved to have taught and played with Matthew. I wasn't able to keep in touch with my professional world. I would have liked to involve them in this.
My body became puffy and uncomfortable. with gas and water retention, my face was twisted and grey, my eye sockets were sunken and black, the whites of my eyes were yellow. I did not look in the mirror. I was ashamed of myself, to the outside world I was passive and weak, I had little confidence. I rarely telephoned my friends and they gave up on me, I wasn't much fun. I lost touch with people. I did not have a social life. I did not have a life. I held on, I wished my children's life away, to a time when Henry would be at full time school, to enable me to rest a little and concentrate with determination to get better. I coped because I had to, I distanced myself from everyone apart from my children. I split myself into two, I pretended to be normal, remembering how to behave rather than just being. I could not allow myself to be affected by the outside world, to cry increased my pain, to be angry increased my pain, any form of stress would enhance to level of tension in my muscles, which enhanced the level of the pain. Just being awake was in itself stressful, the effort involved was overwhelming.
Peoples reactions to me in everyday situations were often upsetting to me, I was slow in mind and slow in speech and slow in body. I was a nuisance, I would often get bullied by shop assistants. Like animals that sense weakness, I was easy prey. Most doctors I saw were so cold, unsympathetic and unhelpful. I was made to feel worthless.
By the time I got to the Pain Clinic at the Royal Free Hospital I was walking with a limp, I know in retrospect that this was a ripped ham string, my knee felt the pain. My right ovary was affected and caused me intense pain, prior to my period. My pre-menstrual tension and the psychological affects of this were heightened, the tension causing yet more uncontrollable pain, I bottled this all inwards.
The winters were always worse, our bodies naturally tense themselves against the cold, more pain. I would have a virus which affected my sinuses, on top of my constant sore throat, it took months to get better. I was occasionally anemic, yet more fatigue. I did get angry, I was so fed up with feeling like this that I kicked the hoover so hard that I broke my toe. I wanted to feel another form of pain to override the constant agony. This was self abuse and a cry for help. I was honoured by being given a pair of brand new crutches to use, by A & E however no Doctor thought that this was cause for concern.
My heart beat was often irregular and I would wake in the middle of the night to a racing heart and covered in cold sweat. I was not able to get back to sleep, for at least two hours by which time I had just an hour or so before in was time for the children to begin their day. I never woke feeling refreshed. I did not get back to sleep because I was in so much pain and also anxious about the following day, how was I going to cope with Matthew and Henry.
I did not blame my children, I did not allow myself to be irritated by them. Henry, my youngest suffered the most. I wasn't able to give him the attention and education I would have liked to. He has suffered with stomach aches and sore throats, he does not recover from these for a long time, his immune system does not appear to function as well as it should. He is and was as a baby exceptionally quick and wild. He has tantrums at the dinner table most nights, ruining our mealtimes together. He was an angry baby and he still is an angry boy. They did not understand, Matthew who is ten years old now, says that his life was boring before I got better, now mummy is fun and life is no longer dull, we do so much, well, just normality.
I was unable to make decisions, to plan for the future. I existed from one minute to the next. I lost a lot of money, I have not been able to handle my financial affairs. I was not able to keep up to date and learn how to use a computer. I have not been able to carry on, in my way, my career as a fine artist. My partner has had to compromise his ambitions and his career. He is self employed and sometimes chose not to work to be with us. Our relationship is a mess because of Fibromyalgia CFS/ME.
I was 90 years old, with dementia.
My treatment relieved much of my pain and fatigue within a month. This restored my energy and cleared my head. This was wonderful, I knew I was going to get better. I was going to fully recover. I was happy to work hard at my rehabilitation. I realised then how much of my life had been taken away from me, my children and my partner. The treatment released all my anger and sadness, I was in mourning for my lost life. Angry to know that I had been incompetently treated and my requests for physiotherapy ignored. Angry to discover that the treatment I was having was not 'alternative' physical therapy, but mainstream within the NHS. I know now that the Doctors at Hampstead Group Practice could have referred me for Physiotherapy, but they did not. They could have given me advice, but they did not. They could have diagnosed me, they did not. They made no attempt to care for me and as a consequence did not look after my children.
I suffer now from emotional trauma, created by physical torture and alienation. I am in a state of limbo trying to rebuild my life and to clear my name of the diagnosis of Fibromyalgia and the stigma attached to it.
It has taken me many hours of work and research, of chasing bureaucrats and the Medical profession, to find out why this society and my society treated me and hundreds of thousands of other women like me in this appalling way. The more I find out, the more I make sense of this senseless, shameful disease, a disease that is not a disease, but a mechanical fault, the more angry I become. The process of complaining is a sham, made unnecessarily complicated. I am made to feel as though I have to prove myself. I am told I have to complain and write letters within a specified time and that my letters should be replied to within a specified time, but my letters have not been answered within their time limits and my questions have not been answered. Notes have gone missing, referrals have not been made. There have been many inaccuracies and omissions in my GP's notes and letters. I am not satisfied with the Convenors response to my Primary Care complaint.
Government Policy on Fibromyalgia differs from the Royal College of Physicians service consideration policy for Chronic Muscular/skeletal pain. The Medical Profession around me, has tied themselves in compromising knots to wriggle out of their responsibility towards me, aided by the Royal College of Physicians policy. I have been discriminated against and treated with prejudice. I am trying to find a new GP within my area who knows about Fibromyalgia CFS. This is proving difficult. I am unable to get comprehensive Health Insurance with this diagnosis because all of my body, internally and externally was affected and I would not be covered because of exclusion clauses. I am an outcast.
This is my personal and emotional account of how my life was affected, I could write more but it is hard to condense a long history into a small space.
If you would like to get in contact with Jane about her struggle you can write or telephone
23 Courthope Road London NW3 2LE Tel. 0207 482 6090