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.

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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.

 

“We are not prepared have Jeremy Hunt wreck their childhood”

As Talks Between the Government and the BMA Briefly Resume A Survey of Junior Doctor Parents Shows More Than 50% Considering Leaving NHS England if the Contract is Imposed.

This week a five-day truce in the embittered junior contract dispute between the British Medical Association (BMA) and the Government was announced. The new contract proposes, among other things, an increase in weekend working. The dispute is not merely about Saturday pay, there are more complex issues at hand. Recently, the Equality and Human Rights Commission (EHRC) has reviewed the contract and is concerned enough to ask the United Nations for a review of the contract with regard to its legality and potential effects on women in particular. It is worth noting the results of a recent survey of more than 1000 junior doctor parents.  They have spoken up voicing grave concerns about the new contract, set to be imposed this August.  The proposed contract threatens a mass exodus of doctors with families. This exodus in light of recent reports of 300 unfilled foundation programme posts and unprecedented levels of specialty training posts also vacant could add a further serious insult with serious concerns for patient care.

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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. Respondents to the survey were predominantly female (82%) highlighting concerns that women medics (and male counterparts) face working for the NHS today.

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. Junior doctors can be aged up to their mid-40s and older. This survey should serve as a stark warning to Jeremy Hunt to consider during this five-day hiatus. 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. This contract threatens both lives of medic children and, with a potentially reduced workforce, the lives of patients too. As one respondent stated, “we are not prepared have Jeremy Hunt wreck their childhood”.

Junior doctor parents already face significantly stressful work-life balance demands. Respondents described marital breakdown, decisions to terminate pregnancy, elderly parents struggling to babysit, living apart from family and commutes of up to 4 hours a day. They describe already not seeing children for days at a time due to shift work and having only one family weekend in months when both parents are at home. Further stories of children suffering emotional harm and family members flying in from as far as America to cover night shift childcare.  The survey comments make for bleak and depressing reading. This is before the potential contract is implemented, some leaked proposed staffing rotas suggest working as much as every other weekend which would have a huge, untenable impact on family life.

“Children need their parents, it doesn’t matter what other childcare the government thinks we could or should arrange, this remains a fact and has a significant impact on wider issues of public health (through breastfeeding) and social and emotional development,” says Dr Amber Holmes, a GP trainee.

“For the hassle and stress the small amount of pay I’d have left after childcare at the end of the month it just wouldn’t be worth it. I could be slightly poorer but see my family every day and be valued – as opposed to working myself physically and emotionally into the ground for no respect from the government. It’s not what I signed up for when I started med school,” stated one anaesthetist.

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.

The 2016 proposed Junior Doctor Contract equality analysis openly states that it disadvantages women but that this ‘indirect adverse effect on women is a proportionate means of achieving a legitimate aim’. The legitimate aim claims to be a “7-day NHS”, an electoral promise which the government intends to provide with no additional funding. Women, men and their children make for serious collateral damage in this, as yet, un-costed and un-modelled plan. Currently, nurseries and schools provide Monday to Friday services, leaving weekends as essential family time.

“It’s the toughest job in the world, being a mother. I would quit medicine for my child in a heartbeat, but it would be heart breaking to have worked so hard for 15 years for nothing. This government should be ashamed of their blatant sexism against working mothers,” stated one respondent.

The equality analysis goes as far as to suggest that some 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. 93% state that finding any childcare with the new contract will be more difficult.

With rota gaps already threatening safe delivery of care, being unable to attend work at short notice will only exacerbate already stretched departmental rotas. NHS Trust staffing departments may find workforce planning even more challenging, especially if they are implementing drastically reduced staffing rotas. Survey findings also suggest a highly stressed workforce, with more than 77% citing emotional strain and stress influencing their decision to leave medicine with implications that more doctors may take sick leave. Those left in the workforce will be left under further pressures to deliver safe patient care, especially if extended to 7-day elective care. NHS Trusts and all parties involved in the dispute should consider the implication of this survey findings in their decision on implementing the new contract and welfare of the NHS workforce.

To state that the contract is merely about Saturday pay is a naïve over simplification of a complex situation. This survey turns any assertion that work-life balance will be improved for junior doctors under the new contract on its head. 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.

For further survey results visit this
link
.

Survey creator, Dr Sethina Watson, is a junior doctor training in anaesthetics and a mother of four @morefluids

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. 

No Spoonfuls of Sugar Here

Having a positive attitude to taking her cystic fibrosis medicines helps my 23 month old take her morning medicines with ease. Recently she’s decided she wants to do them herself. Took a long time for her to get to this stage. Many of these, especially flucloxacillin, taste not so great. Next steps will be her own Creon and much more. Normalising this with positive language. No vile, yucky stuff here. We love CF meds to keep her healthy!

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.

Home from the Hospital

So delighted to bring Minty home from her hospital stay, a few days earlier than expected. Down to failed IV access and difficulty getting lines into her chubby feet, arms and hands. Her cough resolved after taking longer we would have liked. Home on high dose oral antibiotics (which she really doesn’t like taking) and extra physiotherapy. I worry slightly about her being home and not getting the full dose of IV antibiotics. But overall, absolutely ecstatic that she can sleep in her own bed, rough and tumble with her brother and get her routine back to normal. She did brilliantly well in hospital, fared much better than we did! I am now left dreading the time until her next hospital admission . One week, one year, three years?? Who knows.

The hospital stay was a bit of an altered reality. We came home to try and resume normal life again. We had our first family meal last night, all six of us sat around the table as usual. Chat was around exams, Bieber, friends, food and our upcoming family holiday.

I leave absolutely determined again to raise funds for research and support for those with CF. Sunday is our skydive – yikes!! This is our last few days of fundraising, so if you’ve been meaning to give, never given to charity before or want to support Cystic Fibrosis Trust the time is now! We cannot wait too long for a cure. I cannot bear the unknown future for Minty. I want her to have a normal life. A life that her cheeky little face and snuggliness deserves. Donate here. Thank you so so much for your support and kindness. That’s it for now.

Back to work tomorrow.

P.S. If anyone has any tips for surviving hospital stays and remaining positive, do please share!

 

'Chest is clear, with equal air entry throughout. No added sounds'.

‘Chest is clear, with equal air entry throughout. No added sounds’.