Need Lifesaving Treatment Privately
Hi my name is Sarah. I'm a 38 year old female.
I suffer from very persistent urinary tract infections that has embedded into the lining of my bladder.
I have been suffering from this condition for 5 years and my GP has been at a loss of what to do. Over time the infection has been persistent and chronic and now I'm resistant to a lot of oral antibiotics. I take strong antibiotics orally and now I have worsened so much I am on 3 different antibiotics and have IV antibiotics but still this treatment fails and the infection comes back. The symptoms are extremely debilitating and include having to urinate 76 times a day and often I'm unable to empty my bladder due to infection swelling. I then go into urinary retention and have to have my bladder emptied. Other symptoms include severe pain in my pelvis, lower back and bladder. I already suffer chronic pain in my pelvis and lower back and the infection makes my pain extreme. I live each day taking the strongest painkillers available which does not cut the pain. I also suffer from burning when I empty my bladder and I have a fever which means my temperature is really high at 39. When I empty my bladder I get severe pain and as my bladder fills and after emptying. I have been told by doctors that the more I am exposed to IV antibiotics then my body will become resistant to these and there will be nothing to help me making sepsis and death a possibility.
There is a clinic at the Whittington hospital, the LUTS clinic, the only clinic in the UK, run by Professor James Malone-Lee and a team of experts. The LUTS clinic specialises in these chronic infections and they treat patients who have been failed by the current treatments for persistent urinary tract infections. Current NHS guidelines of giving an antibiotic for 3 to 7 days have failed me and I desperately need the clinic to help me.
The following is a piece that was written in the Islington Gazette.
Whittington accused of ‘withholding treatment’ as UTI clinic closed to new patients
10:35 04 October 2016 Anna Behrmann
Professor James Malone-Lee has a "unique" set of skills.
The trust behind the Whittington Hospital bowed to pressure and reopened a “pioneering” UTI clinic last year – but is still refusing to allow new patients to sign up.
The Lower Urinary Tract clinic, run by Professor James Malone-Lee, previously received high praise from patients as “the only thing that works”.
But it was controversially closed last year after a patient suffered organ damage, said to be linked to Prof Malone-Lee’s “unorthodox” use of high dose antibiotics.
The clinic reopened last year after the case was brought to the High Court and 3,300 people, including patients’ GPs, signed a petition calling for the clinic to start running again.
Patients are referred to the clinic from around the country when treatment does not work elsewhere and they continue to experience debilitating pain.
"The long-term damage from progression of their disease is ethically unacceptable... The situation has been incredibly distressing for all involved"
Patients’ joint statement
A group of patients accused the Whittington Trust of a lack of transparency at the North Central London Joint Health and Overview and Scrutiny Committee on Friday.
Elizabeth Makin and a second, anonymous, patient read out a jointly-written speech.
One speaker said: “The clinic is closed to new patients – this amounts to withdrawing treatment...
“The long-term damage from progression of their disease is ethically unacceptable...”
“The situation has been incredibly distressing for all involved.”
She added the disruption in care was leading to patients “suffering unnecessarily.”
Prof Malone was due to retire in September but committed to two more years at the clinic while a succession plan is put in place.
The Whittington Trust commissioned an external review of the clinic from the Royal College of Physicians (RCP) - which is due in the next few weeks and will be made public.
The trust is also working with University College Hospital NHS Foundation Trust to make plans for the future of the innovative clinic.
It will not open the trust to new patients until a succession plan is in place.
Chief executive Simon Pleydell said: “We are committed to the future of this service, we are trying to find a way forward, but there are lots of problems with doing so…”
He said there was an “issue” with the unique nature of the clinic, especially as Professor Malone-Lee has a “unique set of skills.”
Mr Pleydell said that although “our ambition is to open the clinic to new patients” they will not do this until there is a firm succession plan and the RCP report is published.
My life is at risk as the LUTS clinic is currently closed to new NHS referral patients but Professor Malone-Lee is still able to treat patients privately. Therefore only patients who can afford to pay are allowed this treatment. If I have money and can afford to pay I can get treatment.
I currently am not under any medical professional that knows how to help me and I could lose my life waiting for this clinic to reopen. I haven't got time as I'm progressively worsening living on all sorts of antibiotics and now IV antibiotics. I also suffer from a condition called FND which symptoms are similar to MS but caused by a completely different way. The brain sends the wrong messages to otherparts of the body causing paralysis, weakness, seizures, migraines and chronic pain to name only a few symptoms. My FND symptoms include paralysis and weakness and exhaustion among others. I live day to day unable to lift my legs and I walk only a tiny distance dragging my legs before collapsing and unable to continue. I am in a mobility scooter when out. When I get an infection my FND symptoms of paralysis and weakness worsens to the point that my legs collapse completely and I'm unable to stand and have balance issues. The paralysis/weakness spreads to other parts of my body and makes me completely unable to function. My specialist FND consultant has told me he is unable to help my symptoms until my chronic infection is cured. Meanwhile I'm open to worsening symptoms which the longer this infection carries on my body is at risk of increasing FND symptoms. My Consultant has written to Professor James Malone-Lee at the LUTS clinic telling him I'm an urgent case as FND symptoms could worsen leading to a more debilitating life.
However the LUTS clinic is unable to help me because the trust has closed the clinic to new patients. This is not fair as the NHS is failing me in seeking appropriate treatment.
Please please could you help me in seeking private treatment until somehow the clinic gets reopened. I need to raise enough money to pay for my treatment and also pay for my travel expenses from Eastbourne to London, as I'm disabled and very ill the journey is going to be difficult for me.
Any help you would be able to give me would be saving my life and I would be over the moon to at least have hope in knowing about my infections and being able to speak to someone very knowledgeable in this condition who can treat me instead of current doctors telling me they don't know what to do or how to help me. Please if you can spare something no matter how small I would be eternally grateful.
