Maria Cann's profile
In memory of my dear mum
Patricia Margaret Galvin
5th November 1935 - 23rd October 2004
I was a founding member of the Charity MRSA Action UK when it was formed in October 2005. We all came together through losing someone dear to MRSA and all wanted to make a difference as we all know that many healthcare associated infections can be avoided. We all have one thing in common, there was little information given to us about MRSA and what we could do to help our loved ones and families at the time.
We continue to raise the profile of MRSA and other healthcare associated infections to ensure the public are aware of the precautions that need to be taken by healthcare professionals to avoid contracting unnecessary infections.
I first became involved in a quest to understand MRSA when my dear mum Patricia contracted this infection during treatment for cancer in a large teaching hospital in Southwest England. In trying to understand mum's condition so that I could help her in her decision making about her care, it became more and more obvious to me that there was a culture that had developed within our healthcare system that allowed little in the way of involvement of family, friends who wanted to care, or indeed the patient themselves in the delivery of their care, particularly on surgical wards in some Acute hospitals.
At the time I viewed what I perceived as 'covert' actions regarding MRSA as something that was peculiar to the infection status, and that MRSA was regarded by the healthcare profession as more of a curse than the cancer that kills thousands and was being fought by my mum. In fact I remember the oncologist being able to discuss the cancer very openly with us and asking my mum how much information she wanted. He said "are you the kind of person that likes to know a lot of detail, or would you prefer me to tell you just what you need to know to be able to treat the cancer". My mum opted for the latter, but the important point here is if she had wanted more information the consultant would have shared this with her, and us to, with her permission.
In hindsight I can see that it was not that simple, not only was MRSA the new term I wanted to know more about so that I could help reassure mum that all was being done to overcome this new threat to her well-being, but there was also a culture evolving that had put a barrier between the healthcare professionals and the very people they were there to help.
My mum, dad and myself were all partners in her care when she was undergoing treatment for cancer, this was the case for eighteen months. In 2002 my mum was diagnosed with bowel cancer, its implications and what could be done to treat her and save her life were very clear. Everything was discussed with us. My mum wanted us to be completely involved in her care, she was a very independent lady and her family were the most important thing in her life. The cancer brought out the fighting spirit in her, she wanted to win this battle not just for herself, but she wanted to see her grandchildren grow up and was looking forward to seeing another generation grow. She was vulnerable being partially deaf and communicating in a way that she was comfortable with was important, particularly as she was also dyslexic and any stressful situation would compound the dyslexia.
Mum had a reversible ileostomy and chemotherapy to treat the bowel cancer. This was initially successful, however when mum was referred back to the hospital after her chemotherapy was complete to book in for her ileostomy reversal, she was told that the cancer had spread to her liver. The prognosis was good at the time as mum had had lymph nodes removed when she had the ileostomy so, pending the outcome of other tests, it was believed that the spread of cancer may have only partially affected the liver and a resection was scheduled. Mum's health was good enough to have this large operation, it was unlikely that she would need any further chemotherapy, and this was confirmed following the completion of the liver resection.
After mum had been to theatre she was cared for on a high dependency unit. It was exemplary care, she had an epidural to enable her to be able to move, cough and be comfortable, all this was explained to us. The need for her to be able to sit up and be given physiotherapy was important to avoid pneumonia. Attention to infection prevention and control was good, we were instructed to ring a bell to go into the ward, sanitise our hands on entry and to do the same when we left, all supervised by staff to make sure we avoided the risk of spreading infection.
Mum stayed here for two days and then she was moved to a surgical ward. I immediately noticed the difference on this ward. It was filthy. I said nothing as I didn't understand the risk of saying nothing at the time. My thoughts were mum will be out of here within a few days and provided I kept the area around her clean she should be OK. How wrong could I be, to me a clean work area denotes that the people working in it are diligent and that they are attentive to the things that are important in delivering their service, in this instance, care. I still ask myself the question, why didn't alarm bells ring immediately, perhaps if I'd spoken up things may have been different.
On moving to the surgical ward mum was greeted by the consultant that had performed the operation, in his surgical scrubs. He sat on mum's bed - I remember wanting to challenge him, but remained silent again - he said that he was confident that all the cancer had been removed, he was pleased with mum's progress and she would be going home in a couple of days with a follow up at oncology as an outpatient. The physiotherapist came to visit mum and sat on the bed. I remained silent again, thinking that these people don't read the signs that are placed above the bed requesting that visitors do not sit on the bed but use the chairs provided. I knew the reason why we shouldn't sit on the bed, so why were the healthcare professionals any different?
Mum's progress was good to day five. Then on day six when I went to visit expecting her to be telling me she was coming home she had taken a turn for the worse. She told me there was a bug on the ward and several people had been very sick including herself. She had some disturbing symptoms, severe vomiting, rigours and a high temperature. Mum wasn't entirely lucid which was worrying. I asked a nurse what was wrong and she didn't know. I asked if she could look on her chart but was greeted with the reply that she had only just come onto the ward so didn't know. In fact no-one on duty could tell me what was wrong, or tell my mum what was wrong. The "bug that had made other patients sick" was something that patients on the same ward had told my mum.
I rang the next morning to check to see if mum was OK, no-one knew. I was able to persuade a member of staff to look across the ward to see if she was awake, which she was. I went in earlier that day and met my dad on the ward. He was very concerned and said to me "I think she has that superbug". I didn't know what he meant and asked him "what superbug?" "that MRSA", to which I replied "they would tell us if she had something that serious". I didn't know what it was myself at the time, I'd seen it on the news and didn't really take a lot of notice, it hadn't affected anyone I knew, so I suppose the saying is right - "nothing matters 'til its personal"
I was now very worried as mum was very poorly, again I asked the staff for information, but no-one on the shift was able to answer and the ward sister was in a meeting. I didn't want to leave mum as I had little confidence in the ability of staff to look after her with such little knowledge of her condition. They didn't seem that concerned yet she was very poorly indeed. Her breathing was laboured, her temperature remained high and she was barely lucid. Her charts and notes at the bottom of the bed didn't give any clue as to her condition, in fact, other than the high temperature, they reflected a well patient.
Mum had been moved to near to the door, it was a Nightingale ward and she was now well away from the nurses workstation where she was on the previous day. Mum murmured to me that she had been moved there as staff didn't expect her to make it through the night and this was something they did on this ward - other patients had said it was the death ward.
Whether this was fact or in the minds of patients is not the issue. The point is, this was the perception of my mum and other patients on the ward, and with the attitudes I had met myself I was not surprised. No-one appeared to know what was wrong with mum, or if they did it appeared that they had been instructed to say nothing, and not by my mum, as she too wanted to know what was wrong and what they were doing to make her better. Reluctantly I went home. The following day mum appeared a little better, but was still not happy that no-one had discussed what was wrong. She didn't wish to be a burden as staff were busy but would appreciate it if someone could explain what was happening as she wanted to go home.
It was clear that she was not well enough to go home as she now had another line in her arm with a drip giving a drug intravenously. I asked a nurse for information as mum may not have heard what was said to her if this had been explained, being extremely hard of hearing. The nurse told me she had "a bit of an infection going on, but it was all under control and they had changed her antibiotic to the appropriate one to fight it and there was nothing to worry about". At last some information, she had an infection and they were giving her the right drugs to treat it. I wrote down the name of the drug from the pouch feeding the IV line so that I could research it. Mum had Meniere’s disease that affected her balance as well as her hearing and was on medication for this, so I wanted to double-check that anything she was being given would not conflict with her day-to-day medication.
The drug was Vancomycin. I went home and Googled it. In April 2004 Vancomycin given intravenously was described as the drug of last resort to treat MRSA. Was dad right?
I arrived on the ward the following day and mum was still poorly, her breathing remained laboured and she was less mobile with her body bloating. I asked if she wanted to speak to the ward sister and she said she had asked for someone to come and talk to her but the staff were busy. I said I would get someone to talk to us. I managed to get one of the staff to come and talk to us about mum's prognosis and what treatment was planned. I also asked if mum had MRSA. With the latter question I was immediately rebuffed with the reply "MRSA is nothing to worry about, we all have it" "Just don't dig in, don't touch your mother". I was taken aback by this reply and said that I didn't understand. I was then told "We can have this when we come here in the morning and then when we go home we don't have it, anyone can have it".
I was completely confused, and remain confused with this attitude to my mum's MRSA infection. I then asked how they were treating it as mum had shown a brief improvement but was now deteriorating; I also asked what the risks were. I was told they didn't know how they were going to treat the infection as mum's needs were complex, she had many co-morbidities and because of this they needed a multidisciplinary team meeting to decide what to do. The problem was they couldn't get everyone together to make any decisions as they were not available.
This surgical ward had now completely cut my mum, the patient, her family who wanted to help care for her, and now the consultant who had operated on her out of their plan. Mum was no longer a partner in her care and neither were we.
This deterioration continued further, to the point where mum, who was previously a vibrant lady, determined to fight the cancer and live was now saying she had had enough and said she wished to die. She was bloated, and now bed-ridden, her breathing was so laboured she could barely speak and I was desperate to have them do something. I asked every day for a week about her future treatment, I rang NHS Direct, I rang Cancer Bacup. No-one could help. I then insisted that they help her. I didn't know this at the time, but on the day she had lost her will to carry on and said she now wanted to die, she had said this to the staff on the ward - I found this in her medical records after she died. May be this was her death sentence, the infection, the treatment and lack of care had driven her to say this.
I said if they didn't do something I would be talking to a solicitor as I didn't feel that just waiting to have a multi-disciplinary team meeting when diaries could be cleared was acceptable, mum was in a bad way and they needed to treat her.
This seemed to work as they agreed to insert a stent into the surgical area that was infected. A tube leading from the bile duct to the liver was infected - probably from surgery, but no-one could say. She also had a partially collapsed lung and plural fluid was infected with MRSA. I am certain that if this procedure had not been carried out she may have died then, yet no-one discussed the seriousness of her condition with her or us.
During this time I had to email the Director of Infection Prevention and Control anonymously to report a nurse who wore the same pair of surgical gloves whilst inserting lines into patients without changing or washing her hands. The nurse had written a telephone number on the gloves which influenced me to observe her. The nurse had treated my mum and inserted a line and clearly had no training on infection prevention and control. I also had to take advice from NHS Direct on how to reduce the risks of cross-infection as I was in contact with other vulnerable people at the time, no-one was able to give me any advice on the surgical ward when I asked for it, other than not to touch my mum, which of course was a nonsense.
Mum recovered after the insertion of the stent, the Vancomycin finally worked, I am not clinically trained but it doesn't take much to work out that whatever was leaking from the bile duct was probably helping to spread the infection and cleaning it and stemming it with the stent was what was needed.
Mum's cancer did spread, her ileostomy reversal, didn't take place. She was readmitted so that the stent could be removed and it was during the procedure that the discovery of further cancer spread was made. She was discharged to receive palliative chemotherapy. The lack of communication on the part of the Acute Trust continued however. No information was ever passed to the GP, Oncology, MacMillan nurses or Hospice about her MRSA status. Even on her readmission the Acute hospital had no record of it.
Mum was in fact still colonised with MRSA in her wound. I found all this after she collapsed and died following violent vomiting and rigours. She didn't want to go back into hospital and preferred to end her days in her own home. She wouldn't allow us to call an ambulance. She said if she had the MRSA again she couldn't face going back to that hospital and would rather die - which she did.
The reason I know that she was colonised with MRSA when she died, and possibly reinfected - her medical records. I found most of the information about her condition by sifting through them, and what I couldn't find I obtained from the Health Protection Agency computer print outs on the swabs that were taken. There was no post-mortem, mum said she didn't want that, her body had been through enough. As far as I am concerned MRSA and the treatment she received in the surgical ward killed her, there is no way she would be readmitted.
Where Acute care was concerned it seemed to me at the time that the terms "Clinical Governance" and "Multidisciplinary Team Working" had become fashionable wording which means little to most patients and families. What about patient involvement in their care?
Is this account unique? Sadly not. This happened in 2004. Yes, infection prevention and control is now back up the list of priorities, but true patient involvement and patient partnership in care is not always attainable. Our charity still deals with people who have similar experiences with healthcare professionals not communicating, even now.
I complained to the Chief Executive and part of my resolution was to be involved with the design of patient information literature so that when patients contract MRSA there is information available so that they can ensure they know how to look after and protect themselves, particularly on discharge from hospital. 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. The bloodstream 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 how they are doing, although my mum is one of the people who will not be recorded in the figures, as the MRSA was not in the bloodstream at the time of testing, it was in her lungs and wound site.
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 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, and continue my education and learning in the subject of healthcare associated infections and antimicrobial resistance through the many contacts we have now forged in the healthcare economy. I am a member of Blackpool Hospitals NHS Foundation Trust and work in partnership with healthcare professionals to bring the patients voice to the table with regard to infection prevention and control.
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 legislation relating to the Code of Practice for the Prevention and Control of Health Care Associated Infections. I assist the Charity by consulting and responding to draft policy, procedures and consultations from the Department of Health, NICE and other agencies. I was a member of SURF, the Department of Health service users' research forum, working with researchers and experts in infection prevention and control and antimicrobial resistance, this role encompasses involvement in advisory panels on guidelines and research proposals. My volunteering includes involvement as a lay member and patient representative in the development of the EPIC 3 National Evidence-Based Guidelines for Preventing Healthcare-Associated Infections in NHS Hospitals in England (2014), member of the Joint Working Party recommendations on the prevention and control of multi-drug-resistant Gram-negative bacteria (2015), and the Joint Working Party on the review of MRSA guidelines (2016/17).
I respond to sufferers and dependants who come to us for assistance, raising awareness of MRSA, its treatment, promoting good infection prevention and control, good prescribing practice and safe, high quality care.