Letter to government: Mesh Standard of Care

 

patient care

****For the attention of Owen Smith and the parliamentary working group for vaginal mesh***

My apologies it has taken me a while to get this letter to you before the next meeting in parliament on Tuesday. I was very ill last week with UTI infections which led to me going into hospital again for IV antibiotics and treatment in my local urology department. I have suffered with chronic UTIs since having TVT-O mesh inserted in 2009 for stress urinary incontinence. I have now become immune to oral antibiotic treatments, and the infections have colonised in my bladder.
I want to tell you about my experience with dealing with my local hospital to get the treatment I needed. I had a very similar experience in December, having been diagnosed with a pseudomonas infection. I had been on long term antibiotics most of last year to keep an E Coli infection under control. As a patient of Dr ElNeil at UCLH, this was an agreed course of treatment to try to rehabilitate myself and reduce the amount of time I was having to spend in bed because of the severity of my symptoms. When these infections flare I live between the bedroom and my bathroom. I cannot function well enough to perform any activities of daily living and I rely on social care calls to help me at home with my ten-year-old son. I was so ill last week, my husband had to work from home every day, because I couldn’t even go to collect our son from school at 3pm every school day. The impact of these infections leaves me totally dependent on others to prepare meals, packed lunches, and keep on top of household tasks. I am rarely able to sleep well due to bladder spasms and kidney pain. It is like being in labour all the time. It is relentless.
I had been ill with UTI symptoms since 5th of January. My GP sent a sample off for testing. The results came back showing no sign of infection (this happens a lot). It is my understanding that as these infections progress and colonise creating biofilms. These biofilms can throw the test results on the standard NHS lab tests for UTI’s. My symptoms were so severe, and I was clearly very swollen and in pain, so my GP did another sample five days later, and again the results came back saying I had no infection. On Monday of last week, my district nurse came to change my catheter. She was unable to remove the catheter because it was stuck on something. It is procedure for the district nurse to refer patients with this problem to A&E. The chances of causing a trauma or bleed when the catheter is removed are high, so it isn’t something that can be done without access to a urologist and emergency team response in a hospital setting. She was very concerned that my blood pressure was low and I was visibly in a lot of pain. She also noted I looked grey. On her advice, my husband and I drove to my local A&E to have the catheter removed and to ask for the urologist to run blood tests and an ultrasound scan to look at my bladder and kidneys for signs of infection and damage.
I spent six hours in A&E and was sent home because the results came back saying I didn’t have signs of infection. As a non-urgent patient in their eyes, I was sent home because they are suffering from bed shortages. Other patients had to be prioritised. I was told by the A&E doctor that he had spoken to the microbiology department and they advised from looking through my results on their system, that I have had signs of pseudomonas infection before December, and these had gone untreated. He advised that I needed to be referred to an infectious disease specialist and that I should be given an appointment for a scan and urology appointment on Tuesday or Wednesday of last week as a priority, because I would likely need IV antibiotics again. My husband and I returned home. No phone call or appointment to go back to the ambulatory unit on the Tuesday or Wednesday were arranged. The urology department were again going off the results from Monday and said I wasn’t infected or urgent, so I would be booked in for a scan and they would send me an appointment to see the urologist for the results. The date for this would be sent to me in the post, with no indication of how long a wait I would have. By this point, I was deteriorating. I had been bypassing a lot due to the infections (I have failed urethra sphincter control due to mesh damage), but by Wednesday my lower sphincter was so inflamed, I was having to lie in a shallow bath of warm water to allow the urine to pass and give me some relief. I was doing this every four to five hours because of the acid pain the trapped urine was causing. I was exhausted and frustrated, that yet again I was having to fight to be heard by medical professionals and given the treatment I so desperately needed. My husband phoned the district nurse for advice and she told me to go back to A&E in the morning, so I would have a better chance of seeing the urologist during day time working hours.
We returned to A&E on Thursday morning. The A&E doctor had some knowledge of mesh and biofilms. He was the first doctor to listen to me, to hear me, to believe me that I needed treatment. I was admitted to the urology department that afternoon. The urologist and his team came to see me at 8.30 am on Friday. One of the junior doctors remembered me from December. This helped my case, because he knew the IV antibiotics had worked in December. The urologist was appalled that no one had even tried to remove the stuck catheter. He was very receptive to the research I shared with him and did what needed to be done. The catheter was removed, causing a minor trauma. The catheter balloon was stuck on scar tissue. The ultrasound was performed, and I was given IV antibiotics that afternoon. Thankfully, I have been feeling much better this week, and I am grateful to him for listening to me and acting on the information I shared with him about mesh infections. I was discharged from hospital later last Friday. I have no UTI symptoms now. No bladder spasms and kidney pain, and I have been able to collect my son from school four out of five days this week. The treatment worked, but I fought all week for it, and that is simply not good enough. We shouldn’t have to go through this time and time again.
Having to fight to be treated for these life-threatening infections took a massive toll on my mental and emotional health last week. It triggered all the gaslighting I experienced when I first went back to my local gynaecology department in 2010 with serious mesh complications. Back then, I was told it was soft tissue bruising and I needed to wait for the mesh to settle into my pelvis. I was prescribed pain medication and signed off work for a year. Their advice that it could take up to a year for the pain to settle was a misdiagnosis. I had to fight to have mesh removal. The first revision surgery they booked for me wasn’t until August 2011. Almost two years after I had mesh implanted. For those first two years, I was pretty much housebound and disabled. I had to have social care for my son, who was two at the time. Had I been a single mother, it is likely my son would have been taken into care. Try to imagine how difficult it is to live through that for years. The lies and gaslighting from the gynaecology team and pain team at my local hospital made me feel like maybe it was me, and this was some sort of psychological problem. I lost all sight of who I was as a person. My body and brain were tormented, but I knew in my gut that these complications started the moment I woke up from having mesh fitted in 2009. I persevered. I attended five different hospitals in the North West area of the UK and had three more attempted removal surgeries with a gynaecologist at St. James’ hospital in Leeds. This took me from 2011-2013.
At that point I had to retire from my career as a lecturer, I was fighting to get disability benefits (another fight that took two years to resolve). I was in a wheelchair and on morphine and lots of nerve pain medication. I was told that removal of all my mesh was a potentially fatal surgery, and the gynaecology department refused to keep me on as a patient. So again, I was abandoned by another medical team. I was 40 that year. My life was in shreds. I was suicidal. It was a very low point for me. Then I heard Dr Elneil on the radio talking about mesh. I made an appointment to see her privately at her Harley Street clinic and was booked in for removal surgery. Dr Elneil was able to remove most of the mesh still inside me, but I can remember her telling me that the partial removals I had previously through 2011-2013 had caused more damage. The pieces of mesh had eroded into my bladder and urethra and obturator canal. Dr Elneil saved my life. The mesh removal gave me instant relief. For the first time since 2009 I could see some hope for my quality of life. It really was a turning point in my mental and physical health. I will always be grateful to her for taking me under her care. She is the only surgeon I have any trust in now.
My progress was positive at first, but as I became more active, my health deteriorated again. I was suffering from extreme stress incontinence and autoimmune diseases began to hamper the recovery process. I also had very severe nerve pain if I walked too far or lifted a bag of shopping or walked up and down stairs. The disability aspect of my conditions began to worsen. I am still under the care of Dr Elneil at UCLH, but because of the infections, I now need to be referred to a urologist and infectious diseases doctor. The urologist who treated me locally last week, did not want to take me on as a patient because he isn’t familiar enough with mesh complications and mesh infections. Yet again, I am paying for a private consultation with Dr Elneil. I have a telephone consultation with her on Friday 2nd February to get her advice on my situation and hopefully a referral to a urologist and infectious diseases doctor.
Mesh infections are progressive, and there needs to be a standard of care for mesh injured patients, like cancer patients. These infections need specialist treatment. I strongly believe that the medical community and our government have a duty to be studying mesh injured patients like me, so that a proper care plan can be established to help those patients who come along with these complications down the line. We are the clinical trials. Why is no one studying us? Why are we still having to fight to be heard? Why is this government and the MHRA not taking on board that the risks of mesh are just too great? I had stress incontinence before having mesh, but I could work, I could have a social life, an active family life, an active sex life with my husband. How can they continue to say the benefits outweigh the risks, when the risks are so devastating? How can the risk of death for a surgery for stress incontinence be defended?
Mesh infections are the biggest killer of mesh injured patients. There have been over 1,000 deaths recorded on the FDA database related to mesh complications. How is that not enough of an indication of how seriously unethical the continued use of these dangerous medical devices is? There will be deaths in the UK. How many of us will have to die before we are taken seriously?
Mesh patients in America have been implanted with mesh up to five years before mesh was marketed and used here in the UK. As a global community, we need to be looking at the progression of mesh complications in American patients and learn from that. The complications are progressive. Immunity to oral antibiotics, means many patients need more serious IV interventions with very powerful antibiotics and chemotherapy treatments. Organ failure is something many are faced with. There are patients on dialysis and waiting lists for kidney transplants in America. Here in the UK, we have patients with permanent catheters and stomas because of the extensive damage mesh erosion causes to our bladders, bowels and urethras. We have patients developing multiple autoimmune disorders like Lupus, Reactive arthritis and Sjogren’s Syndrome. We have patients who are developing cancers from the toxins released by mesh into the body.
Too many of us are dismissed by doctors and the denial of mesh being the cause of our serious medical complications is prolific. We are looking at preparing for our deaths. Writing wills, letters to our children, our husbands, our parents. At any point these infections can become life threatening. This is the reality of living with mesh complications. It isn’t just about pain and lack of sex life. We are suffering far greater struggles that are currently not being addressed by this government. The greed and avarice going unchecked at the heart of this scandal is something that you can no longer afford to stand by. We do not want to be placated. Apologies are not good enough. Addressing the issue as a problem of the consent process, is not enough. We are fighting for our lives. We are fighting to spare the lives of other women. We will fight this until our dying breath. The choice you must make is simple. Do you ban mesh now or do you wait until some of us have died before you start to take this seriously?
We patients need a standard of care. We need disability benefits and social care packages, up to and including hospice care. We should not have to keep fighting for these things daily, but we are left with no choice when the government, regulators and medical community continue to treat us so appallingly. I urge you to act now.

Yours Sincerely
Cat Lee

 

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