Greater Than The Sum of Its Parts #PowerOfUs

Much of what we do in medicine involves the work of teams. To deliver medical care however basic or complex involves the work of more than one professional. Ideally, shared decision making involving the patient and their families helps to deliver high standards of care using best practices and weighing current available evidence. Working within that team requires respect for others, shared and open goals, a desire to seek and prevent potential errors and continuous re-evaluation to improve our work. These words may sound like ‘buzzwords’ or ideals, but their value has become more evident since my youngest daughter was born nearly two years ago.

It was a Friday afternoon, we’d had a lunch meeting about how the acute medical take needed to work; how we needed to work together to improve patient care. A consultant listened as we shared our experiences, where things needed to improve and who could do what. My phone rang with no caller display; I knew it would be the hospital calling, but about what? It is those personal calls at work that twist your stomach.

The news was layered slowly and deliberately, your daughter has grown Pseudomonas with antibiotic resistance and a bio-film. Again it felt like our lives had been shattered, the pieces we had carefully constructed to build a normal life and retain hope for a beautiful future seemed in disarray. I was unable to re-order them into any meaningful shape. The trouble with being a doctor and a parent of a child with a serious chronic medical condition means you know too much. I know the implications of this and imagine the worse outcomes possible. My darling toddler, the situations she must deal with.

Cystic Fibrosis is a hidden condition. Here she is a picture of health and happiness!

Cystic Fibrosis is a hidden condition. Here she is a picture of health and happiness!

In she went for two weeks of IV antibiotics. There for a good few weeks  we were in despair, hope lost. I sought the fragments of hope, I looked for it and couldn’t find it. I know that the outcomes of young patients with Pseudomonas can be tragic. I sought inspirational stories from those with young children with Cystic Fibrosis who had cleared such a strain of Pseudomonas. I found none.

We made it through the weeks in hospital. But we felt different. I returned to work a different person. I feel for every patient whose stay in hospital is longer than they imagined. Who wait, two days or two weeks for test results. Who sit without families, without basic creature comforts and lose levels of dignity and privacy which we take for granted. I know the feeling of waiting for the ward round, that piece of news you need, something, anything. Doctors breeze in for a few minutes and are gone again. Packing your bags and going home is the best feeling in the world. After her hospital stay we drove to her next follow up appointment nauseated with worry. Future feeling very bleak.

My daughter (and us) have a team of people who look after her. A team made up of doctors, specialist nurses, physiotherapists, dieticians, psychologists and social workers. There are several such teams dotted across the UK caring for children just like ours. Social forums ask ‘what’s your team like?’ People discuss varying advice given and there seems differences across teams and situations. People won’t even move house for fear of having a different CF team! CF is an individual condition, what works for someone might not work for someone else. Atul Gawande wrote about a determined doctor who redefined the approach to CF care and how they deliver excellent care as a team. CF team care perfectly demonstrates how the whole is greater than the sum of its parts.

As I sat waiting for the doctor he arrived. Bright, enthusiastic and engaging. Matter of factly he told me her latest cough swab was clear. Relief was almost too difficult to express, it bubbled slowly from within, but too hard to fully allow. It will take days to sink in. However, it was what I learned that day was about the power of teams and a team ‘mission statements’ to borrow corporate terminology. He told me they believe in Aggressive Antibiotic Eradication Therapy (AET) for Pseudomonas. ‘No need to feel bleak at all,’ he said. And here’s why.

We got her CF on newborn screening. These kids are doing very well.

We are monitoring her like a hawk. If we suspect Pseudomonas and can’t find it we will hunt it down. If we find it and we will do everything we can to get rid of it. If that means bronchoscopy and two weeks IV that’s what we will do. If we need to do that several times, we shall do that. That’s what we believe in here. We will not accept it living in there. We will not accept a cough as normal for her.

When she transitions into adult CF care, which she will, I want her to have no evidence that she even  has CF. And that is what we expect.

She may be too young for clinical trials, but once there is one for her, we can try it. There is lots going on at the moment.

You as a family are fully on board, you are doing her physiotherapy, you call when you are worried, you give her the treatments we recommend. You are doing very well.

We are doing very well. I had never thought of that. I had never heard those words. Her treatments and life are fully integrated as normal for us all. Or as normal as things can be. We never use negative language around her. ‘Yucky medicine’, ‘palaver’, ‘time-consuming’ are words we never say in front of her. The nurse who came into the room proudly praising her for taking ‘that repulsive’ medicine’ (flucloxacillin) easily was doing more harm than good. It took months to get her to take that with ease. One thoughtless comment could cause endless problems, luckily she is too young to decide to stop taking it. In that afternoon I left bursting with hope again. The doctor and his team have our backs. They lift us up when we are down, the guide us through this journey, they teach us, listen to us, hear us and help us. Each individual on that team plays an important and key role in taking care of her. I was struck by our daughter’s consultant sharing their team ‘mission statement’, we used them all the time in my corporate career. I used to write them for my business clients. They may be seen as ‘naff’, by they are important and make sure everyone is on the same page, with the same goals. Perhaps we should be using them more in medicine.

During her last hospital stay I really saw how the nurses really are her main carers, with no disrespect to others. They see her and us more frequently. If a patient gives a box of chocolates for the nurses only there’s a reason behind that. We doctors, though important too, blast in for moments at a time. We come in with needles, syringes, intimate questions, test results and leave again leaving the nurses and other health professionals to take care.The Reith lectures again changed my medical practice, Gawande suggests that we ask patient’s what they actually want. Do you want that test that I am ordering, the result of which may change your future, or do you want that surgery? I know why we are rushed, for I do this myself, we are busy, we may have 30-40 patients to be seen in a single morning. The pressures are on us. But some of the most rewarding moments are when we have time to ask, time to sit and talk to patients and their families. But this balance is hard. A medical career often comes at great personal cost. My child’s life expectancy is shorter than most, I want to be there for her. Do not consider me ‘not a team player’ if I want to get home on time. I need to deliver her physiotherapy, medications and nebulising treatment before her bedtime. One Friday I was leaving at 7pm (two hours late), I was rushing home so that I would see my children before bed. A patient’s family member grabbed me as I was leaving in the lift to ask me a complex question that required a measured response. That night I did not see my children.

Atul Gawande’s Reith lectures recently spoke about how medical care is too complex for one individual to deliver. Teams with individuals specific and expert roles can deliver a care that is synergistic. One part of the team breaks down and care can suffer. Not only can patient care suffer, team members themselves can suffer. However, the balance between individualism and medicine is complex. I find it hard working with others who have their own self-serving goals. To impress, pass exams, get to do something ‘cool’ at the expense of another colleague who also needs to learn that procedure. Those who do not communicate with the rest of the team, not sharing what they have done or are doing. Tests get duplicated, tests get missed. The consultant asks for patient updates and you do not know whether something has been done or not because your other team member hasn’t told you. Worse they have gone to theatre or clinic leaving you to figure out what they may or may not have done. The team member who speaks to other staff with disrespect or worse doesn’t speak at all. These individuals make the team look bad and, worse, can cause patient harm. To reiterate medicine is too complex for one individual to deliver.

Doctors regularly have to be assessed as to how they are functioning as part of a team. We ask colleagues from all disciplines to rate our team behaviour anonymously. A Multi-Source Feedback (MSF), 360 degrees, Team Assessment of Behaviour (TAB) are what they are known as. You then sit down and discuss your performance with your supervisor. You pick the people who want to fulfill the form as apparently you will most value their feedback. However, not selecting those with whom you may have conflict or personality clashes with may omit the most valuable feedback. Another important group missing are the patients. Patient feedback would also be invaluable. My MSF is currently happening at the moment. Always feel slightly nervous about them.

As a doctor working in a team can make the job much more bearable. Team work is what gets one through the difficulty of nights and weekends where stripped down medical teams care for huge numbers of patients. My most memorable nights are when working alone in different parts of the hospital we meet briefly for tea and catch up, helping someone with a job or encourage someone to take a break. It can be stressful when the only time you meet is at a cardiac arrest and dissappear shortly after rushing back to your work. Thank you to that nurse who made me that cup of tea as I nearly tripped with exhaustion at 4am in the morning and to the Senior Registrar who prescribed a warfarin I had not gotten around to doing. The domestic serving tea, the cleaner mopping the floor, the pharmacist checking your prescription are all there with one common goal to deliver safe and effective patient care. We are all members of the same team. Having just worked the Christmas period that bonding and camaraderie of being together at work is enhanced, when you know others are with

Now more than ever do I understand how teams can make or break the patient’s journey. The words you use, the part you play as part of a bigger picture of care are very important. I thank our CF team for restoring our hope, I thank the team who cared for her in hospital from the doctors, nurses, play therapists, domestics, cooks, cleaners, physiotherapists, pharmacists, dieticians, anaesthetists, theatre staff, ODPs, recovery staff and more. One special thanks to the nurse who went and got her a coco-pops bar when she was hungry and eating no food, you know who you are.

Here is to Aggressive Antiobiotic Eradication Therapy and the power of teams. Next time you’re off to an MDT know that they make a massive difference to patients.

Some of her daily meds. Just totalled up Minty's meds & care for the year just to keep her healthy! Dornase alpha £2019.10 per 3 month course Creon Micro £31.50 per pot, 5-7 per year Flucloxacillin £26.04 per week x 52 - £1354 per year Saline around £80-100 per year Azithromycin about 3-4 courses per year at £11.04 each Co-amoxiclav around 4-5 courses per year at £3.60 each Vit E 4 x £42.12 per bottle Dalivit 10 x £5.58 bottle Salbutamol - around £3.50 a year! Clenil - around £3.70 per year Colomycin £324 per 3 month course Tobramycin £3.77 per day, 2 x 2 week courses Ceftazidime £8.95 per vial, 3 per day, 28 days around £751.8 eFlow Nebuliser (specifically for CF patients ) around £800 extra eFlow kit for Dornase alpha around £300 MDT clinic follow up every 8 weeks - doctor, dietician, social worker, psychologist, physiotherapist, specialist nurse. Appt lasts 2 hours 2 x hospital stays (approx 2 weeks each) including 2 GAs, one PICC line and 1 long line - hospital bed around £225 per day Minty has had 5 chest x rays in her life Microbiology - around 10-12 cough swabs per year with results Home visits - as many as she needs from CF Team.  Meds & Nebs alone cost over £7000 This is all funded by the NHS from tax payers like yourselves. With extra support from CF Trust.  This is to say thank you to everyone involved in keeping her healthy and giving her a future.

Some of her daily meds.
Just totalled up Minty’s meds & care for the year just to keep her healthy! Approximations.
Dornase alpha £2019.10 per 3 month course
Creon Micro £31.50 per pot, 5-7 per year
Flucloxacillin £26.04 per week x 52 – £1354 per year
Saline around £80-100 per year
Azithromycin about 3-4 courses per year at £11.04 each
Co-amoxiclav around 4-5 courses per year at £3.60 each
Vit E 4 x £42.12 per bottle
Dalivit 10 x £5.58 bottle
Salbutamol – around £3.50 a year!
Clenil – around £3.70 per year
Colomycin £324 per 3 month course
Tobramycin £3.77 per day, 2 x 2 week courses
Ceftazidime £8.95 per vial, 3 per day, 28 days around £751.8
eFlow Nebuliser (specifically for CF patients ) around £800
extra eFlow kit for Dornase alpha around £300
MDT clinic follow up every 8 weeks – doctor, dietician, social worker, psychologist, physiotherapist, specialist nurse. Appt lasts 2 hours
2 x hospital stays (approx 2 weeks each) including 2 GAs, one PICC line and 1 long line – hospital bed around £225 per day
Minty has had 5 chest x rays in her life
Microbiology – around 10-12 cough swabs per year with results
Home visits – as many as she needs from CF Team.
Meds & Nebs alone cost over £7000
This is all funded by the NHS from tax payers like yourselves. With extra support from CF Trust.
This is to say thank you to everyone involved in keeping her healthy and giving her a future.

Raising a Little Lioness

‘What’s your name?’, we ask her. ‘Lion’, she replies and adds a lion roar to confirm this. Ask her again two hours later. ‘Lion’, she will reply, roar and laugh with glee. She knows her real name well. But on day 13 of 14 of our dear friends tobramycin, ceftazidime, flucloxacillin and colistin visiting if she wants to be a lion then so be it. You roar and you laugh as loud as you can. For you are our brave lioness.

Dolly has a PICC line too.

Dolly has a PICC line too.

Smiling with family!

Smiling with family!

Lioness bed hair!

Lioness bed hair!

Play in hospital with my brother. He misses me.

Play in hospital with my brother. He misses me.

Tonight after her last dose of IVs at 10pm, her PICC line will be removed and she shall come home again. This is her second hospital admission, her second GA and second course of strong IV antibiotics. A not welcome beast has arrived – pseudomonas. A pseudomonas complete with antibiotic resistance and a mucoid layer. Scum. Learning she had pseudomonas was in some ways similar to receiving the initial cystic fibrosis diagnosis. Shock, anger, upset, guilt, hopelessness and powerlessness. One of the few bugs we absolutely did not want her to get. Where were you lurking you ba**ard? Why her?

She fell asleep to Peppa Pig as the anaesthetic took control for her PICC line. She blinked only when the toe pricks were taken for her tobramycin levels. She carries on as normal. Her wee smells (ceftazidime), she’s gone off her food and has been separated from her siblings for two weeks. Yet, she has the energy and self-determination to throw her very expensive nebuliser across the room. She’s refusing this necessary treatment that she will take for the next three months. Play therapists have been deployed to make ‘it fun’. (Tips welcome.) Whilst not ideal I encourage her determined spirit, for it is that spirit that she needs to live with this awful condition.

It’s been hard at times to imagine the future. We are filled with fear. For the moment our hope has been dampened and we are full of worry. Worry is the reason I am awake now when I should be asleep. Worry is the reason I am cleaning every nook and cranny of the house with medical grade sterilisers, even though we cannot eradicate the bug from our home. I cannot wipe every page of each book, every lego brick and cuddly toy. But I feel at least I am doing something. Worry is the reason I follow orphan drug blogs, medical journals, CF research sites avidly. Worry is the reason that I believe her ongoing cough that remains despite these antibiotics means she has not cleared pseudomonas. Worry is the reason I am finding it hard to imagine the future. I am waiting you see. Waiting for the moment I read an article or piece of information that will change her future. A drug, a treatment, a cure even, that her life and future can be returned to her. For Pseudomonas makes her future bleaker. Time is precious. A cure or treatment cannot come fast enough. Around 50% of those with cystic fibrosis die before aged 40.

I was a person who really never did any fundraising before this, didn’t often donate either if I am honest with you. Now, if someone is running, swimming, baking or who knows what else I know the passion they feel for their cause and want to give what I can. Fundraising makes me feel like I am doing something. It removes some of that sense of powerlessness over the condition. It is something for her future AND the future of all of those with cystic fibrosis. For their parents, grandparents, sisters, brothers, cousins, aunts, uncles, friends and family. By giving one person a better life you are affecting all of those people. I have no active fundraising at the moment but we have an ongoing page here. 

But one thing you need to know about lions, they are considered a vulnerable species by the International Union for Conservation of Nature. They are endangered and we must protect them. Like my lioness her future lies in the wider global community of researchers and pharmaceutical companies (like Vertex). But we carry on for now at home. We love her, cherish her and live life ‘as normal’ supported by the excellent care provided by her CF multi-disciplinary team.

I shall leave with this video by OneRepublic.  Please watch and be inspired, thank you for sharing the story of this amazing teen with CF.

P.S. Many thanks to our amazing family and friends who have supported us through the difficult weeks. Every message, meal and hug has been appreciated.