Patients Who Inspire Doctors

As a doctor we meet patients who inspire us, move us and motivate us to continue in this challenging career. Recently, I was called to ED resus to see an out-of-hospital cardiac arrest, their heart was beating, but they were in a very bad way. I intubated them and took them to the Cath Lab. It was very bleak indeed. A young person, younger than me infact. You can imagine everyone’s sheer joy to see them up and talking three days later. No words to express how amazing that was. Early community CPR and use of a community defribrillator was absolutely critical. That persons co-workers saved their life. They were my ‘star patient’ this week, this year. Infact, this ever.

What’s a star patient? I recently wrote about them for The Guardian entitled The patient who showed me how to be a better doctor and person.

A Quest for a Normal Life

In the UK more than half of the people affected by Cystic Fibrosis (CF) will live past the age of 41. As a parent of a child with CF you have various statistics in your mind at various times, but most of the time you try not to think about it. A few months ago I questioned that statistic as we thought that our Minty wasn’t going to make it through her chest infection aged just three. I can write about it now, but that was a shocking moment. 41 years old seemed like an eternity. As doctors my husband and I knew she was seriously ill. Her respiratory rate hit 70, heart rate 180, temperature was 41, she needed oxygen to maintaining her saturation and had not passed urine in 24 hours. She sustained this for hours and I wondered how her little body could keep going having had a general anaesthetic and bilateral lung collapse. We thought she was going to have a respiratory arrest. Those days were bleak and cystic fibrosis had taken over her life. But she recovered. We recovered.

It’s interesting to see how a three year old perceives her condition. She knew she was ill and knew that hospital was where she needed to go. Her choice of clothing that day is reflected in this poignant picture. She had planned this outfit to arrive in hospital. It was her best party dress. She walked into the ward proudly and then sat on the bed. She looked down and tears filled her eyes. I asked her if she was scared. ‘Yes, mummy’, we paused, snuggled and then she jumped down holding back her tears and played with her dollies.

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She choose this dress specifically to go to hospital. She walked onto the ward proud, sat on this bed. When she looked up, there were tears in her eyes and she said she was scared. She then, held them back and started playing. Tough.

This week she completed her first lung function tests, getting 110% of predicted. She’s getting ready to start nursery soon and we’ve written her care plan. I thought I would share our philosophy for living a normal life, with normal activities and hopes and dreams.

‘We believe Minty is a magical little girl! She inspires us daily and is tougher than we imagine. She is independent, funny, caring, sociable, exuberant and extremely adaptable. She does not see herself as ill or suffering. She sees herself as any other little girl, but sometimes she goes into hospital and every day she takes medicines to keep her well. This is her normal life and we make it normal for her. Even when she is really ill and goes into hospital, she goes there to get better and in her last admission she knew she needed to go to get better. CF is a journey that we all learn from all the time but we have developed a philosophy that we hope anyone who looks after her shares. Minty is number four of four children, she has one older brother and two older sisters.

We only use positive language surrounding the condition. She is living with it, she is not suffering, she is not ill. Medicines are not ‘yucky’ or inconvenient. Avoiding certain things are to keep her healthy not ‘stop her from getting sick’. Physiotherapy is to keep her fit and healthy. When she doesn’t want to do it we suggest that she wants to feel great or well. She remembers what it’s like to be unwell and go into hospital, she is able to make the connection and will always pick to do the things that keep her healthy if she needs a bit of encouragement.

When talking to others in her presence about her condition we remain positive in our wording and attitude. This enables her to remain positive in her attitude to treatments, and by her engaging actively that will give her the best chance of a healthy long lifetime.

However, CF is a life shortening condition with a life expectancy in the 40s. With good care, children like Minty are looking forward to much longer life expectancies. It is also important to allow her to feel rubbish, angry and sad. It is important to remember that Minty getting a cold most of the time will be fine, but frequently may result in two weeks of oral antibiotics or sometimes a hospital admission with a general anaesthetic, PICC line insertion and 2 weeks of intravenous antibiotics. She has had 3 admissions so far, we hope to keep them to a minimum by following good CF care. There are many treatments in development, gene therapy, medications and more. As a family we keenly await these for her, we fundraise for CF Trust and keep an eye on research.’

Here is Minty running a toddler race. She may be last but she’s living life to the max.

Follow Magical Minty fundraising efforts on our Facebook page or twitter @magicalminty_cf.

 

Survey of Junior Doctor Parents Show More Than 50% Considering Leaving NHS England

jdcchildMore than 1000 junior doctor parents have spoken up voicing grave concerns about the new contract, set to be imposed this August. In an online survey conducted in April 2016, 99.4% consider the contract will have a detrimental effect on their family life and less than 5% of respondents plan to continue their career as it currently is. 93% consider the proposed contract will have a detrimental effect on their relationship with spouse or partner. More than 25% are considering leaving the profession altogether, with a further 26% considering a move to another country.

“There are around 54,000 junior doctors. A junior doctor is anyone graduated from medical school up to consultant or GP level. Most are of child rearing ages and many have children. When doctor recruitment is already in crisis and only 5% of junior doctor parents plan to continue as is, imposition of this contract could throw the entire doctor workforce into disarray,” states survey creator, Dr Sethina Watson, junior doctor and mother of four. “This contract threatens both lives of medic children and, with a potentially reduced workforce, the lives of patients too.”

The survey asked a range of questions on current level of training, current and potential childcare and whether or not they envisaged continuing their current career should the contract be imposed. The survey identifies extreme difficulties in finding childcare, 93% state that finding childcare with the new contract will be more difficult. The governments equality analysis of the Junior Doctor contract openly states that it disadvantages women but that this ‘indirect adverse effect on women is a proportionate means of achieving a legitimate aim’. The equality analysis suggests that some women may find it easier to arrange informal, unpaid childcare in the evenings and weekends. The survey results showed that nearly 60% of respondents do not have access to such childcare. Of those who do, 86% believe it will be unreliable for ensuring attendance at work. There may be a surge in doctors requesting part-time working, which can still entail up to 55 hours per week.

Of particular concern are the doctor and doctor couples that comprise nearly 40% of those who responded. “I cannot imagine how it would be tolerable if the frequency of our weekend working were to increase; I could easily imagine this causing marital and family breakdown,” said one married male doctor.

Jeremy Hunt’s rush to impose the contract threatens to create a potential time bomb that could explode as early as August as thousands of junior doctor parents struggle to find childcare or quit their jobs. The legacy could harm generations of children and lead to a loss of thousands of years of medical training from the workforce.

Survey Results Summary:

  • 1060 Respondents
  • 84% aged 30-44
  • 82% female
  • 84% married/civil partnership
  • 38% have doctor partner/spouse
  • 38% full time employment, 41% less-than-full-time
  • 39% caring for one, 39% caring for two
  • 59% use nursery and 58% spouse for additional childcare
  • 34% ST 5+
  • Of those choosing to stay in medicine 58% will stay in speciality
  • 40% spend between 20-39% of net household income on childcare
  • 58% do not have access to unpaid informal childcare, those who do 86% say not robust or reliable enough for work
  • If contract comes in 48% plan to use partner for childcare, 48% don’t know what they will do (you could have more than one answer for combination arrangements)
  • 75% expect to pay for this additional childcare
  • 93% said that finding more childcare would be more difficult
  • 4.6% will continue their career as it currently is
  • Those considering other options 87% cite impact on children, 79% impact on spouse, 53% cannot afford further childcare, 77% emotional strain and stress as key factors
  • 74% state the proposed contract will definitely have a detrimental impact on their relationship with spouse/partner (19% state probably)
  • 93% state it will definitely have a detrimental effect on family life and 6% say it probably will

Complete survey findings are available JDCchildcaresurvey2016.

Survey conducted by Dr Sethina Watson, Anaesthetics Trainee, mother of four and former founder of MomMD.com. Follow me on Twitter @morefluids.

For a short link to this survey use http://wp.me/p3pm8R-bk

Featured in The Guardian – Junior doctors: ‘over half could quit NHS England over Hunt’s contract’ and Hospitals braced for walkout as Hunt says doctors’ strike must be defeated.

For more information on the survey and permission to use findings, please contact me below

Being a Junior Doctor & Parenting a Child with Cystic Fibrosis

Last week junior doctors staged another strike in opposition to the proposed enforcement of Hunt’s Junior Contract. A contract which most doctors believe will endanger patient lives and destroy the NHS. On the eve on the third strike, while my daughter recovered from anaesthetic I wrote the following piece.

“My husband and I are both junior doctors. Unfortunately, we cannot join the picket line this time.

We aren’t there because we are in hospital with this little one.

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Smiling despite low oxygen saturation and high fever.

Our three year old daughter has cystic fibrosis. She’s not been well recently and she’s in for a general anaesthetic, bronchoscopy, fixed intravenous line and two-week course of heavy duty antibiotics. The NHS is so vital for her care and future. We have no doubt that she will be well cared for the next two strike days.
The junior doctor fight is for every patient and every person working in the NHS. Doctors looking after her (and everyone else) should be well rested, motivated and valued. She starts nursery soon, we’d like to see her and our other children at weekends. We already work many weekends away from them. CF shows us that life is precious; it is too short.

Doctors involved in her care over the next two weeks will be many; junior doctors, respiratory consultants, anaesthetists, radiologists and microbiologists. But also ward nurses, recovery nurses, operating department practicioners, specialist nurses, student nurses, ward clerks, pharmacists, pharmacy technicians, porters, health care assistants, domestics, dieticians, psychologists, physiotherapists, radiographers, play specialists and more. Behind the scenes are lab technicians, estates workers, IT staff, medical secretaries, central sterile services team, theatre managers, ward managers, volunteers, security staff and a huge long list of others.

We all work together for our patients. We make something pretty amazing. To think that adding just junior doctors to the ward at the weekend is all that is needed ignores the rest of that amazing team.

When times are tough, we remember this phrase, ‘Dum Spiro Spero’. It means while I breathe I hope. Perhaps one day there will be be a cure for CF. We try to remain hopeful about the junior doctor ‘fight’ too.

Junior doctors are standing up for the future of the NHS. Let’s all stand together. Good luck, we’ve got our badges and banners on the ward ready for tomorrow. She says a big thank you for everyone looking after her.

Mr Hunt, I request that you engage with us and take our concerns seriously.”

Since then, she has been recuperating in hospital and faces further treatments prior to discharge home. The contract in short, may mean many doctors simply cannot afford to work in the NHS, whether financially or emotionally. Minty’s story was featured in The Independent and on Doctors of the NHS.

As always, fundraising for the CF Trust is a goal. Minty’s Godfather and family friend aim to cycle from London to Paris to raise money. Find out more about Magical Minty Cycling Team on Facebook or donate here.

To understand more about the Junior Doctor contract this recent Facebook post is an excellent summary. 

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.

Impatiently Waiting

Dolly is getting a wash.

Dolly is getting a wash.

Still no microbiology results. It’s been a week since her admission. I started to worry about the lateness of this results. Largely in part due to her newborn screen taking three weeks as they verified her rare CF gene. I started thinking they are repeating things. Something must be bad. But apparently everyone’s are delayed due to the bank holiday. I hope so. I really hope so.

One week down and I cannot wait to pack up her things and take her home. The thought of one more week is driving me mad. I feel that the family is fragmented into small bits and we are all apart. Zac is being looked after by our lovely nanny Jema, he’s managing somehow. Minty wakes up each morning and calls Zac through the door. My older girls are trying to keep themselves busy this half term, largely looking after themselves as I cannot take them anywhere really. It feels like I’ve not seen them at all in weeks. I miss them all. I just want us all together in one house at the same time. It’s made worse by both my husband and I have a particularly bad run of shifts at work. We’ve not had a weekend together as a family in two months. But that’s another story.

Minty has changed in the past week. She has grown up. I’ve changed. We’ve all changed but I don’t know how. You would never know in looking at her what she is taking in her stride. Her long line is still leaking but still in place. Her wee smells bad, one of the antibiotics I assume. She’s coping well in one small room. The room is hot. Stifling at night. It’s hard to sleep. It’s no wonder patients spike temperatures all the time. We run in and take cultures when perhaps all that’s needed is a open window! She’s taken to cleaning the room with baby wipes, then sucking them. This is driving my CF mum and infection control side bonkers. She wipes the bins, under things, cupboards, then wipes her face, sucks it and laughs. Argh!! When I take away the offending wipe she screams in utter fury. How dare you, she looks. She then wipes the floor, our shoes and then her face. My mind boggles with MRSA, E Coli and who knows what else. The more I try and stop her, the more determined she is. She sees the cleaners in the room several times a day and is copying them. She gives meds to her dollies and who knows, perhaps one day she will be a doctor or a nurse (I hope not!)

Being on the other side of ‘doctoring’ I am so much more aware of how patients must feel. We wait. We wait all the time.

For results.

For medicines.

For ward rounds.

For time to pass.

For medicines to work.

For tests.

For going home.

For drinks.

For meals.

For discharge plans.

For discharge letters.

For discharge meds.

We learned in medical school how patients adopt the sick role. To a certain extent you have to as everything is beyond your control you have to accept that you will wait and rely upon those around you. The waiting is of no means a criticism of the staff that are caring for her. They are caring for loads of other patients too. We are all flat out. It’s the way the system seems to operate, the culture of being in hospital. I never fully realised when you sit there waiting all day to chat to the doctors, the few minutes they come in and out is a flash in a very long day. You always are left with questions.

On a positive note, we’re learning some great new physiotherapy techniques from her twice daily physio sessions. She’s enjoying them and we can’t wait to add them to our routine at home.

Tomorrow our Magical Minty Skydive Team is collecting money for the CF Trust. Very exciting indeed. A permit has been granted by the council, so in Park Street and Queen’s Rd, Bristol buckets and t-shirts are out. We may try and pop out if we can. It’s only 1/2 a mile or so from the children’s hospital.

Thank you to everyone who has supported us so far. Thanks for messages and emails x

Magical Minty – Early Days of First Admission with Cystic Fibrosis

This is my magical Minty. At 16 months she is showing me a thing or two about life, always smiling and just carrying on with things despite facing things many adults with never face.  But today I am feeling angry. No wait.. tearful, optimistic, scared, exhausted, worried. I’ve no idea really. A mixed bag of emotions. I would say the past few days have been unpleasant. Though the extra snuggles and joy I’m getting from Minty make it better. As does watching her cheeky face wave at babies in neighbouring hospital rooms or her stern glare when nurses or doctors try to talk to her.

Friday was the worst day by far. She was nil-by-mouth from the morning, wheezy and waiting for a bed. At 11.30 am still no bed. Then the bed managers juggled and she had a bed. On the list for general anaesthetic and bronchoscopy at 2pm. Bags packed for a long hospital stay (10-14 days expected on IV antibiotics) we arrived. Taking her down for anaesthetic was scary. Holding her in my arms as she was put to sleep was awful. I tried to remain calm for her, snuggling and kissing. Truth was I was 20 times more scared than when I’ve had my own anaesthetic. Leaving her in the care of others and walking away in tears. We passed the time with difficulty. Uncertain what to do. Coffee?? Stomach couldn’t digest it anyway. After 2 1/2 hours of waiting we became very anxious and just wanted her back in our arms. The bronchoscopy was done, the thing that took the longest was inserting her long line. They couldn’t get a PICC in due to her chubby arms (lovely things they are) and had to settling for a Leader Cath (never heard of it), sort of a short long line. It won’t last her length of antibiotics so we will cross that bridge when we have too. But I fear it involves another GA.

Having her back in my arms screaming and smelling of sevoflurane was a huge relief. The first night was terrible, she thrashed and had a chest sounding like a bag of wet sponges. She spiked temps, had a fast respiratory rate and fast pulse. I tried to sleep in the pull down bed next to her, but found myself staring at the monitor and numbers all night. Pulse 116 – good. 168 – not good. And so it went on. Being a doctor and a mum can be a worrying combination.

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Messing about with daddy!

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Trying to escape – Day 2

 

Dose of steroids and some salbutamol and in the morning she was much brighter. She’s on Tobramycin, flucloxacillin and ceftazidime for antibiotics. She’s almost back to normal now. But she’s exhausted and running on adrenaline. Her nap routine and sleep is totally obliterated and she’s all over the place. I have stayed with her since Friday night and had a guilty night home last night when daddy has stayed with her. I’m getting ready to go down as soon as possible as I don’t want to miss the ward round. She’s cultured haemophilus influenzae so far. No idea what this means in terms of her normal prophylactic regime. Was hoping she might get discharged early, but probably not so. Counting the hours until she is home and normal family life resumes. Just want her home. Good thing is she comes home between doses. From about 11.30-5 we are at home, which is great. I am incredibly grateful we live 15 mins away from the regional CF team. The hospital is very good and nurses and doctors have been lovely. Thank you.

Her siblings miss her terribly. She wakes up in the morning shouting their names as if they are also in hospital ready to play! Better go now. But some leaving thoughts from being on the ‘other side’.

Bed managers are important, people are waiting at home to come in. Whole families waiting on news of a bed.

Be considerate when talking loudly during night shifts. The hospital is our home for a couple weeks and being woken constantly is terrible. Sleep deprivation is terrible. Same goes for noisy families – keep it down PLEASE!!!

Discharge letters are important. I overheard an SHO responding when asked to do the TTA. ‘WE ARE ON THE WARD ROUND. IT WILL JUST HAVE TO WAIT’. I heard the tears of an anxious mum and lively 5 year old desperate to be home for the weekend. The fact that the TTAs cannot be processed after 2pm may not be important to you, but that meant that child could be home on a bank holiday weekend and that bed would be free for another waiting patient. I’ve been guilty of this ward round business. Perhaps we should have a dedicated discharge letter doctor somedays. It would be a rubbish shift but have an amazing impact in many ways.

With regards to our skydive. Minty’s hospital stay has lead to a few changes. She’s going to be discharged a few days before and will need one parent at home with her. Doesn’t feel right leaving her. So I am jumping with the skydive team and my husband will jump 2 weeks later. Her hospital stay has made me EVEN MORE DETERMINED. This is a lousy illness, it is unacceptable. We must must must find a cure or support people and their families with cystic fibrosis. If you have a pound or two to spare, please donate to our Magical Minty Skydive Team – we’ve raised over £4400 so far. AMAZING and thank you soo much for every single penny. If you haven’t seen our fundraising video – have a peek!

More soon… By the way. I had thought about not posting as I don’t want to be constantly bombarding people with woe is us news. But lots of people have been asking.

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Waiting for her IVs – Day 3

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After her GA. Washed out

First Hospital Admission

Sudden turn of events. Life has now been refocused on what’s important. Minty has been fighting off a nasty cold for weeks. She became quite unwell yesterday afternoon, worse this morning. I took her to the children’s hospital today, by the sound of her breathing I knew this wasn’t like her usual infections. So tomorrow she goes in for a general anaesthetic, bronchoscopy and long line (central or picc) for 2 weeks IV antibiotics. It’s the day we’ve been trying to avoid. She’s at home now running around like mad after prednisolone and salbutamol. You’d never know she was unwell!

Going to be staying in with her. We are allowed out for home visits etc. Lovely Minty, always smiling.

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Meet the Magical Minty Skydive Team – Fundraising for CF Trust

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On June 8th, my husband and I, plus four amazing friends are going to jump from a plane travelling at 120mph to the ground. We hope to raise thousands for CF Trust in the process. Are we adrenaline junkies looking for our next fix? Absolutely not. Each and every one of us is terrified of heights and has put the actual practicalities of it to the back of our mind. I do sincerely hope that we do not land SPLAT onto the ground.

The fundraising so far has been great fun. We’ve bonded as a team and are coming up with new ideas to raise funds. Tonight Clifton Therapy Centre, relaunching as Victoria Rose Salon, in Bristol is holding a raffle in aid of our cause. In a week or so our local community is holding an auction of goodies and personal time to support our cause. Every donation that comes through fills me with absolute awe and gratitude.  From £1 to £200 I am touched by the amazing generosity of people, people give who you never imagine, friends of friends, long lost friends and family members. Other fundraisers even donate their own money. It is an amazing thing fundraising. If you’ve never given to anything before or raised money, I highly recommend it. You see the best of the human spirit and restore faith in humanity.

We are at £2600 or so so far. A huge amount of money. We’re still driven to get thousands more if we can. To follow our journey like our Facebook page. Or you can donate here!

Cystic Fibrosis is a dreadful condition.

Every week 5 babies will be detected via newborn screening in the UK. It affects about 1:2500 births. The week Minty was diagnosed, a mutual friend’s child was diagnosed one week earlier. He lives 1 mile away. Since her diagnosis another friend’s niece was diagnosed. 1:25 of Caucasians carry the defective gene – that’s around 2 million people in the UK. When two people with the defective gene have a child, that child has a one in 25% chance of having CF, 50% chance of being a carrier. Anyone related by blood to myself and Paul has a chance they are a carrier and may choose to get tested. So far, several of my cousins and family members are coming back as carriers. If you have two copies of the defective gene (of which there are thousands of types) you will have CF.

“Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases. Cystic fibrosis is caused by a single defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. – See more at:http://www.cysticfibrosis.org.uk/about-cf/frequently-asked-questions#na

Meet our amazing team of skydivers!!

We are four Bristol based doctors (graduates of Bristol University), one Bristol University fourth year medical student and one Bristol-based Counsellor.

Sethina Watson

I’m Minty’s mum and a delta F508 carrier. I’m not stopping fundraising until Minty can have a normal life. Every day I wake up and check the news to see if there are any treatments for her CF genetic mix. Not yet, but one day there will and it will because people like you gave a few pounds to help. It does make a difference. Please give! Thank you!

Paul Watson

I’m Minty’s dad. Minty is a cheeky ray of sunshine. Her favourite things (apart from Mummy) are “playing music” and dancing. Every day she has to put up with many syringes of medicines to keep her healthy, enzymes to swallow with every meal or snack and physiotherapy. She does it with a smile and a giggle. But despite all this, she has had multiple infections in her short life so far, and her future health is uncertain. The CF Trust funds research that is developing medicines to help many people with CF. There is no specific medicine for Minty’s genotype yet, but with more research and develplment this can change. That’s why I’m fundraising for the CF Trust. Please support our jump for Minty! Thank you.

Rachel Cowie

For a long time I have been aware of the medical issues that people suffering with cystic fibrosis have to deal with. Meeting Minty and seeing exactly how the disease impacts upon her life and the lives of her family has however been more eye-opening and inspirational that I’d ever thought. There is currently ongoing research into the development of medications and medical techniques which aim to prolong life expectancy and improve the life quality of cystic fibrosis sufferers. The potential of these new interventions is huge. Real advancements in the treatment of cystic fibrosis are possible and in a time frame that would significantly help Minty and other children of her age. Such advancements could increase her life expectancy by 20-30 years and enable her to lead a much more normal life. The Cystic Fibrosis Trust helps raise money to fund this research and offer much needed support to affected families.

Like most sensible people, the thought of jumping out of a plane (or rather being pushed out by the instructor) is pretty terrifying. Doing a skydive is something that I have always very much wanted to do however have never found the courage to actually go through with. This is an opportunity for me to do something challenging in support of a charity that can and does make a huge difference to those affected by cystic fibrosis. We are hoping to increase awareness of the charity and hopefully raise a good sum of money to help them continue their work.

Any amount of money that you can give to help us achieve this goal and support Minty would be extremely helpful and very much appreciated.

Laura Saunders

I have long been an admirer of Sethina’s drive and tenacity to tackle any challenge head on and now I have the opportunity to do something to help too. And what a challenge we have to take on… As you have read above cystic fibrosis is a disease that shortens the life of too many. But curative treatments are a only short reality away. All we need to do is help provide the funds so research can continue and achieve this amazing goal.

So please sponsor me to hurl myself out of a plane from 21,000ft.  It’s a terrifying thought and not even having a strapping skydive instructor strapped to my back makes it sound any better! Whatever you can give will make a huge difference in the future of all CF sufferers and in particular Minty and her amazing family x

Stafford Wilson

I’ve been a very good friend of Minty’s dad since we were in University together in the early 90’s. When I heard the news that his new baby daughter had cystic fibrosis I was very concerned for everyone. I cannot imagine the emotions and stresses that Paul and Sethina have been through in Minty’s first year, but when I visited the other day I had a great time playing with Minty and whatever struggles they have gone through, I think Minty is testament to what an amazing job they are doing.

Doing this Skydive is a way for me to kill several birds (hopefully not literally!); to give my support to the family and to the research that could make such a massive difference to Minty’s life, to realise a dream I’ve had for years of doing something like this, and to lose a little weight to get fit for it. I’m also really glad that I’m doing this with Paul – as we have been through a fair few scrapes/adventures together!

So please sponsor me/us and make the difference when we’re jumping out of a plane at 10,000 feet!

Vicky Pyne

As a medic, I understand the clinical side of Cystic Fibrosis and have spent time with patients with the condition. I can see how research has already made a huge improvements in healthcare for those with the condition but I also see how much further we have to go.

As a mummy, I can’t imagine how I’d deal with the news of a diagnosis of life-limiting condition such as CF in my own children. I see how much daily effort (over and above all the things that you do as a parent anyway) Sethina and Paul make with Minty to give her the best possible chance at a normal life.

As a mummy-medic, Sethina has been an inspiration to me for quite a while – she was very important to me in helping me make one of the best decisions of my life to retrain as a doctor. I’m doing this for her, for her gorgeous daughter and for all the other people for whom more money into research via the CF Trust can make an enormous and positive difference to their lives.

I’m not normally scared by much at all but the idea of a skydive genuinely terrifies me – I am seriously only doing this to raise a big wodge of money – let’s make this happen!

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Our jump date is set for June 8th 2014 in sunny Swindon.

The Longest Journey. Anaesthetics Here I Come!

For me children and career are entwined in a complicated relationship of progression and pause. Had I never had children I would never have become a doctor.

My journey to becoming a doctor began 16 years ago when I was pregnant with my first child. I encountered the medical profession in ways I never had before, saw amazing doctors who were brilliant role models. The decision to become a doctor was an epiphany, a complete realisation that this was the job I should have done all along. Deciding to do this at a time when I was about to become a mother seemed ridiculous and absurd. My career aspiration was set within a few minutes of my epidural ‘kicking in’. I went from the worst pain in my life to no pain whatsoever. That was it, from that moment I had to do that job. I was 28. The anaesthetist was a magician in my eyes. How he knew what drugs to use, where to place them and to what effect. This was something I simply needed to do. 

From that point my journey to become a doctor has taken what seems forever. The journey has been complicated, hard but extremely rewarding. I spent the next 6 years holding my dream. 

Just six more years.

ImageI was working in my other career but most of all raising my two girls 5000 miles away from where I wanted to go to medical school. I volunteered in a hospital developing x rays, watching births, making coffees and many other things to see if the job would be worth the sacrifice it would entail.

I waited and waited until I could apply to medical school. I wrote to the BMA. I should have kept the email they sent. They told me that very rarely did people over 30 get into medicine, and indeed their brains did not have the ability to absorb information and learn quickly enough! I applied and was rejected. I waited again and applied again, this time receiving two fat envelopes inviting me to interview at Bristol and Kings the day after I was told my husband had lymphoma. I explained to the Universities and withdrew my applications. I applied the following year and was invited to interview at Bristol. 


Just one more year.


This time I flew 5000 miles and arrived to be asked first in interview ‘you didn’t just fly all the way from America to do this interview did you?’ ‘Umm, yes.’ was my answer. I was 33.

I was unable to do the five year course as I did not have science. No bother, I was delighted to do the six year course.

Just one more year.

My first day in medical school was awful. Starting on the 6 year course I was given a physics exam which I could not do. I thought they had made a huge mistake giving me a place for I would never be able to pass this course. I passed. Balancing medical school with family was hard, but not impossible. As I mentioned the two are entwined. Exams always coincided with school holidays, so when others revised I was making craft projects and cooking dinner. My marriage did not survive and in the third year I made the decision to carry on my degree despite great personal and financial hardship. I felt like I was racing against the clock, trying to finish my course before I got too old. During my time in medical school I always knew it was anaesthetics for me. SSCs, placements and electives confirmed it and I worked hard to demonstrate my commitment to specialty.

Unexpectedly I remarried 2 months before finals and became pregnant with my 3rd child. The job I had finally waited for was due to start when I was 20 weeks pregnant. I was advised not to start. But I’d gotten the anaesthetics and ICU F1 job I wanted and couldn’t wait to start. 

I was extremely ill during the pregnancy and developed pre-eclampsia. I decided to go part time doing F1 over two years,which again wasn’t part of my planned career journey. Yet, more time to wait to start my anaesthetic job. I met with a careers adviser for support in my first 3 weeks of F1. She told me that ‘I didn’t stand a hope in hell’ of getting an anaesthetics job and in fact told me I should give up medicine altogether! I politely said that I hadn’t sacrificed so much to get to this point and give up. She also said that my CV would not be as competitive as my ‘younger counterparts’. 

Just one more year.

My husband and I were keen on more children. Having had my third aged 40, having another one seemed a challenge. Another clock was ticking. But aged 42, I finally had my last and fourth child. This added another year to F1 training.

Just one more year.

F1 seemed to last forever. It was extremely difficult. But I kept my enthusiasm alive by hoping one day I may get an anaesthetics job. I worked hard on audits, presentations, publications, courses and as much as I could to demonstrate my commitment to specialty. In my early 40s, I attended my interview. I knew it would be tough as needing to stay in this area means tough competition. But I know that not having the luxury of time I had to worked hard to get the job. 

Waiting one month for my interview results was hard. I was gutted to see that I did not get an anaesthetics training place in Severn. There were 21 jobs and I scored 24th. I was upset to see my lowest marks were awarded for commitment and reflective practice; the two things I had worked most hard on over the five years. 

But I am delighted to say that I applied for a place through clearing and I am now doing ACCS Anaesthetics in Wales from August. I shall be commuting to South Wales from Bristol. I am very excited to finally be training in the job I have waited years to do, I shall be, ahem, 40-something. I am also really excited about joining Wales Deanery. There may be twists and turns, hurdles and roadblocks but eventually I am getting there; making sure I enjoy the journey along the way.

If I see you I will beep my horn across Severn Bridge.