In memory of my dear mum Patricia
5th November 1935 – 23rd October 2004
Bristol Royal Infirmary
I was a founding member of the Charity when it was formed in October 2005. I found new friends who had all been affected by MRSA through the MRSA Discussion Forum, we all felt that we had to do something to stop what we perceived as a lack of concern when our loved ones had contracted MRSA. I don’t say this lightly, the one thing we all had in common was that we were given minimal information, or in some instances no information at all about MRSA even though our loved ones had contracted it. Two of our colleagues with a background in nursing who had MRSA and survived also had similar experiences in terms of the information available about how it affected them.
We were concerned and we still are, we continue to raise the profile of MRSA and other infections to ensure the public can do whatever they can to protect themselves if they have to go into hospital.
My dear mum contracted MRSA when she had a liver resection following the spread of cancer. This was a risky operation and is only done where there is a high degree of certainty that the cancer will not return. Mum initially recovered extremely well from her operation, she was then moved to a surgical ward and she contracted MRSA in her wound site. We were not told, but I found out by researching the antibiotic Vancomycin that she had been prescribed, when challenged I was told that it was nothing to worry about as we all have MRSA, its all around us. Mum was very poorly and I thought we were going to lose her, but she was a fighter and pulled through. Unfortunately the cancer spread and she passed away later that year. I was never certain whether on the day she died whether she was presenting with MRSA again, she seemed to be displaying similar symptoms, mum had requested no post-mortem when she had been diagnosed as terminally ill, we therefore respected her wishes. I did however obtain her medical records as I was not satisfied with the lack of information given to us, and the poor infection control procedures in the hospital at the time. The MRSA had spread to her lungs and we were never told. I had in fact helped with a surgical procedure to aspirate her lungs as she could not breath, I was splattered in the fluid that was aspirated as there were no nurses available to help with the procedure at the time. Mum was even still carrying the MRSA on discharge from hosptial, but no follow-up was ever done to check that she was clear even though she was attending Oncology for chemotherapy, her swab tests from the Health Protection Agency showed positive on the last test she had – we knew nothing yet we were caring for her.
I complained and part of the resolution was to be involved with the design of patient information literature so that when patients contract MRSA there is information available and the veil of secrecy is removed. That was my first involvement in working towards involving and informing patients about the risks of MRSA and how to prevent the potential spread of the infection. The hospital concerned also had good practice examples that they were adopting and we have shared these with other Trusts. Their infection rates have started to reduce, I hope this continues, even though I no longer live in the area I do keep an eye on the figures and get feedback from people who use the hospital who tell me things are improving.
The skills that I hope to use for the benefit of the Charity come from my work in the public sector. I have a background in customer involvement, quality and performance management, working in two local authorities and for a Primary Care Trust.
I have been a member of a Public and Patient Involvement Forum, and have been involved with the NHS following on from the Bristol Inquiry and the Retained Organs Commission.
I have worked with the Board of Trustees of MRSA Action UK on the development of a monitoring framework to assist NHS Trusts in the compliance with the new legislation relating to the Code of Practice for the Prevention and Control of Health Care Associated Infections, effective 1st April 2007.
I look in on the MRSA Discussion Forum on most evenings, and the issues are the same as when I first found the forum when my dear mum was poorly with MRSA, I remember how I felt when there was not much in the way of information out there, and do what I can to help anyone who posts there. It would be good if we started to see a reduction in the numbers of people coming on there with the same stories we had to tell, I think we are a long way from that, but I will continue to do whatever I can to raise people’s awareness of MRSA and to campaign for safer standards.
