I was born with Ehlers-Danlos that has only recently been diagnosed. I also have other health problems that have caused me a lot of pain and suffering, including Bullous Pemphigoid that has taken at least 20 years to diagnose.
Why was my healthly womb removed?
I was informed that I had Carcinoma-in-Situ and I agreed to a hysterectomy. My womb was removed in January 1985 when I was just 29 years of age. John Saxby the Chief Executive of Pennine Acute Hospitals N.H.S. has sent me documentation that states that I only had CIN11 in my cervix not Carcinoma in Situ that I was told I had. Why did they remove my womb?
NO TREATMENT PROVIDED... A Quarter of a century of NEGLECT!
Tameside General Hospital has denied me healthcare since at least and including 20th May 1989. I am awaiting a response to my recent complaint (8th May 2013). Many of my severe health problems, some that I was born with were undiagnosed by the doctors at Tameside General Hospital. I have been discharged without treatment allowing me to continue suffering unnecessarily.
Despite an apology from Tameside General Hospital NHS Trust (26th May 1999) for misdiagnosing my Spina-Bifida and associated brain abnormality, 14 years on Tameside General Hospital has still not provided any healthcare for my neurological problems.
Over the years I have suffered neglect from the medical professionals and the healthcare system. A few more examples are as follows.
In Brief: -
- In 1982 doctors did not believe that I was in premature labour for four days. Two monitors were broken. My daughter was born with cerebral palsy. After the birth I had an epidural. I have suffered from severe headaches and neurological problems since. I have recently found that I had an untreated infection.
- In 1999 I received an apology from Tameside General Hospital because their neurologist claimed that my neurological problems were 'not organic'. Two other specialists found that I had a degree of Spina-Bifida and an associated brain disorder. I have since been diagnosed with mild spastic quadraplegia.However Tameside General Hospital have still not provided healthcare for my condition.
- In 1985 I had a hysterectomy. A large abscess developed on my surgical wound. I suffered for three days before the abscess was excised as it was thought that I just had the flu. Initially I was administered the wrong antibiotics. Also I have been suffering severe pain and bleeding from my vagina for years. My gynaecologist has recently informed me that there are two 'atrophied' places that bleed due to the skin being thin from the hysterectomy.
- In the mid eighties, I had severe problems with my neck that eventually I received treatment for. An x-ray and testsat Tameside General Hospital showed early onset inflamed osteoarthritis. I was treated with antibiotics and heat treatment, provided with a surgical collar etc. At my follow up appointment the consultant discharged me and stopped treatment because I could (and still can) put my hands flat on the floor with my legs straight. This flexibility and early-onset osteoarthritis are both features of Ehlers-Danlos.
- In 1992 I had suffered from severe abdominal pain for a number of years before doctors believed that I was genuinely physically ill. Doctors had to operate immediately to remove my right ovary that was found to be stuck between my vagina and bowel. It also had a cyst on it.
- In 1984 I told Dr Carswell at the Royal Oldham Hospital that I had a problem with certain foods. He has noted this in my hospital and commented that I need a psychiatrist. I was finally diagnosed with Diabetes in 2004. I have also been treated at A&E on numerous occasions for allergic reactions.
- Severe abdominal pains over the following years were yet again dismissed by doctors. I explained that it felt like a ball was moving around inside me. Eventually my husband had to pay £1500 for a M.R.I. scan that found a growth the size of a tennis ball on my left ovary (with 'features of malignancy' but fortunately benign). This was eventually removed in 2008 but I was left with an infected surgical wound oozing fluid that I had to dress myself at home. I am still suffering without any treatment or investigations. I have had to resort to uploading a video on the Internet of this infection. My video has more than 125,000 views to date.
- I still have a lump thought to be a cyst in my throat that was meant to have been biopsied on many years ago. The ENT Unit at Tameside General Hospital have discharged me allowing me to continue suffering. I have recently been diagnosed with a submandibular infecion and a hard lump under my chin is thought to be a swollen salivery gland that is infected and spreads to other glands causing painful swellings of my face and ears. I paid £165 on 9th April to see Dr Pease at the Nuffield Hospital in Leeds. He stated that the swelling is Urticaria. Urticaria is associated with the Bullous Pemphigoid that I have that was undiagnosed at Tameside General Hospital and also missed by Dr Helbert the Immunologist at Manchester Royal Infirmary.
- I have skin lesions that recently a consultant diagnosed as a form of Arteritis'. He immediately arranged urgent blood tests and a biopsy but changed his mind when he read my notes. He said that he "is obviously not a part of it" (recorded). Update (this skin lesion has recently diagnosed as Pre Bullous-Pemphigoid ulceration. Pemphigoid antibodies have been found in my blood.
- I had a lump in my right breast removed in 2002 but I had to pay privately for implants as the N.H.S. would not fund me. I now have a large lump under my arm and associated pain etc. 'reactive lymph nodes' have been found on Ultrasound etc. but I have been refused further investigations and received no treatment for this. On 7th January 2013 this lump was examined over the top of my clothing by a junior doctor at Manchester Royal Infirmary. He said that he could not feel the lump (what a surprise). He insisted that he is a fully qualified Consultant but it was quite obvious and that he wasn't and his qualifications on the General Medical Councils web site also proved that he was not a fully qualified consultant.
- I have only recently received treatment for bleeding from my bowels that were found in 1994 at St Georges Hospital in London. Tameside Hospital and the Royal Oldham Hospital have failed to diagnose or provide any treatment for my long standing bowel problems. Tameside General Hospital were aware of this since 20th May 1989. I have had to endure extreme pain and suffering uneccesarily on a day to day basis all these years and it is still ongoing despite Professor Whorwell diagnosing 'Severe Irritable Bowel and tests recently undertaken at Manchester Royal Infirmary finding that I still have a prolapsed bowel, rectoceles, impared sensations etc.
- I am still suffering from Post-menopausal bleeding and pain. I have two small holes inside me that the doctor informed me were from my hysterectomy and this is where the bleeding is coming from. However at my last appointment, he said that it was atrophy.
- Many of my medical notes are missing (my G.P. notes from birth to 1991 and hospital notes) and at least one of my letters has been 'accidentally' shredded according to a medical practise manager.
I have suffered from hives all my life etc. I have very recently found out that my health problems are consistent with thyroid disease, especially the Uticaria/Hives. I have informed doctors for many years about the swelling of my neck, hair loss etc. and the strong family history of thyroid disease in my family, from my grandmother through to my daughter and more recently my granddaughter. Recently thyroid nodules have been found on Ultrasound. The doctor informed me that thyroid nodules are common.
Three of my brothers had treatment for cancer (throat, lung, tongue). One of my brothers died aged 57 years of age; another died two days after his 60th birthday of unknown causes. I am 56 years old. The longest surviving brother died aged 69, I believe that he had good health care and that is why he lived the longest.
A consultant has informed me that it is the hospitals, not the doctors who are 'worried' about being sued. He also said that 'they' have to be cautious.
Is money worth more than the pain, suffering or even the life of a patient?
My name is Shirley. I am nothing but a number and a statistic to the N.H.S. To my family and friends I am a person, a human being. A human being has the right to be treated with Dignity and Respect (World Health Organization)
I was born in Oldham in the North of England. The only girl and the youngest of five half brothers. My life has been eventful. I believe in justice and honesty. If someone or something harms me or my family, then I will do everything within my power to put an end to it.
I have been asked why I am doing this. People tend to think that I will get very poor or no health care at all if I continue but I hadn't received much health care until my recent diagnosis.
My medical files are full of lies and derogatory statements and they paint a very different picture of me. I have the true version on here supported by facts. I am not very popular with the some of the medical profession because I expose them for what they are. I do not see them as some kind of God but as a person with a job to do.
Liking or disliking me should not come in to the equation. When I pay for private treatment I don't choose some quack who is great to get on with, I read their credentials. Unfortunately we do not have much choice in the NHS.
What more would anyone want to know about me? I speak my mind. Treat like with like. Enjoy nature. Love my family and friends. I love animals. Care about the world. I write poetry, enjoy photography... and I do what I can to improve healthcare in the U.K.
In the beginning...
I was never informed that I was born with Spina-Bifida. I just thought that the 'dint' at the base of my spine was just one of those things.
The first entry in my hospital files is a letter to the Gynaecology Unit at the Royal Oldham Hospital is from my G.P. Dr Orr. I was 16 years old and pregnant. In the letter Dr Orr says that I have low intelligence. Initially I was under the care of Miss Evans but Dr Patrick (gynaecologist and pioneer of the first test tube baby) replaced her.
Dr Orr had been our family Doctor since I was a child. He was also a family friend. What reason would Dr Orr have to 'mistakenly' inform a gynaecologist that my intelligence was low?
That is the first blatant mistake in my medical files, the first of many serious 'mistakes' and cover-ups since the moment I was born and it is still ongoing to this day...
Read more about Patrick Steptoe...
In 1982 I was 32 weeks pregnant and in labour. I was admitted into Royal Oldham Hospital but two machines monitoring my contractions were broken. It was three days before the hospital realised that I was having contractions. After a long and difficult labour my daughter was born. My daughter was born with cerebral palsy but that took two years to be diagnosed. My placenta was stuck. I had an epidural for manual removal. I have recently found out that with having a degree of Spina-Bifida and the associated brain deformity that I should not have had an epidural.
I have had numerous problems obtaining health care over the years. These problems led me to forming a campaign group. One small advertisement in our local newspaper and I was inundated with calls from patients who needed help.
I have been passed from Consultant to Consultant (passing the buck). The cause of each of my health problem was eventually diagnosed and treated but this has happened time and time again and is still continuing to this day.
In January 2008 a large mass was discovered on a routine scan. An M.R.I. scan paid for privately followed (£1500). The report from Christie Hospital in Manchester states that this was suspicious of malignancy.
I had surgery in April 2008 at Hope Hospital in Salford. I have been left to suffer a lot of pain with nowhere to turn. Ultrasound scans that I have had, at a private hospital last year and also recently at Hope Hospital, found numerous problems, yet most of these problems did not show on my C.T. scan at Hope. This raises questions, how accurate are their machines, are the widths of the image slices sufficient etc.?
I have endured public humiliation, abuse and neglect from some so called ‘medical professionals’. It has been a long, tough and painful journey that I have paid a high price for both emotionally and financially. It is not over yet.