Posted on

The Paper-Based Maternity Record: Patient Centered Care at it’s Best

So as many of you know by now,  we are expecting our fourth little baby later this year. My husband and I, along with our beautiful daughters, are so excited with this new arrival and as we prepare for the changes in our home, I feel all sorts of emotions on a daily basis.

You see, it has been a long time since I have been pregnant (11 years to be precise!) and truthfully, in many ways, this feels like my first all over again! But in many other ways, I feel alert and aware and am so glad to have my age and past experiences of being a parent on my side now.

At the beginning of this pregnancy I was given an A4 paper based health record file to bring home with me. I was told to bring this record to every healthcare appointment I attended – to be shared with health professionals in hospitals, with my GP and the many other health professionals I visited.  This paper based record (which I carry on me personally) contains very detailed and personal information about me, as written by my health professionals.

My date of birth, address, phone number, next of kin, blood type – and all of my own and my families health history – is there to be seen with anyone I share it with. 

Now this may ring alarm bells for “data protection” advocates BUT I want everyone to know why you need to turn off that mode for a few moments.

This record was created for the simple purpose of patient safety, yet it does so much more than that. It recognises the importance of patients having information to hand at every point of their care – and that patients are completely capable of accessing, storing and managing their health records.

It also recognises that the patient is the only common denominator between all of their health services, and as they are the ones meeting all their health professionals, then it is only obvious that they should have the information on them to hand at the point of care.

I currently use four hospitals for my prenatal care: Mayo University Hospital [Mayo], Mater Private Hospital [Dublin], Bons Secours Hospital [Galway] and Holles Street Hospital [Dublin]. Each time I visit them, I bring my health record with me. Every health professional can see my up to date information, the last notes that were written about me by my health professionals and they can also see other information such as my blood results and scans. They too can each write their own notes into this file, meaning when I go back to my obstetrician or GP they can see immediately what was said and the possible plans for me for going forward.

Better still, I can see these notes too. 

I can add information about myself into the designated section and I can question it if I am unsure about anything. None of the health professionals I meet have to ring anyone to get my information; they don’t have to log into separate EHR systems; nor do they have to just rely on me for my information (which quite often, with baby brain syndrome!) can be hazy at the best of times.

I, as a patient, am trusted with this information. My health professionals trust me.  I am trusted to mind it, to keep it safe, to access it.

And for me, that is what person centered care is all about.

Trust. 

Now that doesn’t mean that everything can not be improved upon and for this reason I pose a few questions.

  • Would it be better if it was an electronic record that I could keep on my phone or PC?

Yes, probably. But practically speaking, would I not then have to hand over my phone to my various health professionals so they could access it? Would they have to navigate through each of the apps pages to get to the information they need? And could this be potentially time consuming? Additionally, if it were electronic, I worry about my record getting hacked or losing access to it – like what happened in the NHS? Where is the back up plan when this happens? Yes, you might ask me what happens if I lose my folder, like I could lose my phone – but I feel this risk is minimal – firstly, I look after it as much as I look after my credit card; secondly, it is only one record put in one other persons hands – not millions of patients records, left in millions of unknown peoples hands; and furthermore, my main health professionala already have my records stored on their electronic systems as is.

  • So, would it be better then if I didn’t have the record at all and only health professionals could see it?

No, I personally do not think this is the better way to go. And there are two reasons for this. Firstly, I feel I should be able to access my data at any time given and be completely aware as to what information is stored about me.

After all, if I am capable of growing a human being inside me, why can’t I be capable of looking after my health records? 

Secondly, not all health professionals electronic health record systems (EHR) in Ireland are interconnected. While a lot of work is being done to achieve this in the HSE, I still have concerns over what happens in the mean time? For example, if one EHR is installed in one maternity hospital at a time, and the paper based record is removed on the back of this, what happens when I use an additional hospital and they have no access to my records if they haven’t had the EHR installed yet? Will my GP be able to access, log in and input information about me or will they just receive a summary sheet? And what about private health professionals – will they be allowed to access a public system EHR to access information for their patients? Or if I had to travel to a specialist maternity service abroad – what would happen then?

I personally love technology and I can’t wait for an interconnected health system, but we still need to make sure no-one falls through the gaps in the meantime.

One way of ensuring that patients are not put at risk while this exciting transition of integrated records is taking place is to ensure the paper based record is not removed until all hospitals and primary care facilities are connected to the same system. One solution could be as simple as printing off the information from the EHR and popping it into the patients folder. And even when this is done, that a replacement for this patient held paper based record needs to still be available in a user friendly electronic application.

The data is, after all, my information, and I should still be able to see it. Especially if I use services which are not in the public system, or in Ireland.

But there is one more thing that still bugs me.

After my baby is born, I have been told that I will not be allowed to keep this record, nor will I be given another health record to bring with me for the future – even though I have multiple chronic conditions. I don’t know what happens to this maternity record nor do I understand why I can’t be trusted to keep my records after having my baby (even though caring for a baby is the biggest responsibility a human can have!) Why do all patients, people or families not have the same opportunity to keep their records, as women do when pregnant? I would still see all my health professionals (plus my baby’s!) and they would still need information about me and my family, would they not?

Why is there then a sudden shift in the reasoning for carrying ones own health record? Why are we suddenly mistrusted after pregnancy with accessing and storing this information?

I know I would never have had to create the MediStori if I had been allowed to keep my own and my families health records together. Everything would have been there to hand when I needed it and I could ensure all information was correct. I wouldn’t have to repeat my medical history over and over again when meeting new health professionals. Or try to remember the last time I had an appointment or a scan.

The MediStori is all about family-centered care and people can put in or leave out any information they want in it. Much like the maternity record it understands the fundamentals of the patient being the only common denominator. It is not disease specific, instead it helps people manage their health holistically – appointments, symptoms, medical history, medications and so on. It is used from pregnancy, birth, childhood – right up to end of life. And you don’t have be sick to use it.

When I received my maternity record I was so grateful as I thought it did the exact same thing. Except for the fact that it is only for a certain time in one’s life, and would be taken away from me as soon as that period was over. or could be taken away altogether on the back of EHR’s in health services.

I have worked in the healthcare domain for many years now and I have gained a lot of knowledge in preventative healthcare and personal health information. I always practice what I preach when working on the MediStori: person and patient-centered care at all levels are critical in the delivery of, not just healthcare, but most importantly right now for me, the safe delivery of my baby.

But after baby, comes a mum, and it is then, more than ever that a mum, dad and a family need as much support and resources that they can get – and having vital information to hand is just one of those things. Vaccinations, public health nurse visits, baby weights, vitamin D doses, development and growth charts, health screenings – the list goes on when minding a healthy baby.

It is not just “sick” patients which need help – parents too need to ensure they are empowered.

And it is critical to know that empowerment is not about anyone having power over another – it is about partnerships.

Partnerships, built on trust.

 

Posted on Leave a comment

How Other Entrepreneurs Can Learn from Olive’s Dragons Den Experience

At 7am, on the morning I woke up to pitch on Dragons’ Den, I rang my husband and said I couldn’t do it. Told him I was coming home.

Told him how scared I was that I would make a fool of myself. Worried about what people would think of me – would they think I was too big for my boots? Would people hate my idea? What if I messed up on my financials? Or tripped and fell and made a fool of myself? I even worried about people seeing my weight gain on television because they wouldn’t know I was pregnant during the interview.

Reading this, you might think these are strange thoughts to have, but to me, they were real.

I was doing everything and anything in my power to convince myself not to do it. But my husband wouldn’t let me. He answered every fear with a logical answer. Told me I could do it and reminded me of everything I had achieved to date. Told me to be myself and all would be okay.

And so I did it. With morning sickness and all, I took that deep breath and walked out in front of the “Dragons”.

I remember the moment exactly when my nerves eventually started to settle. Gavin Duffy sat back, and asked me how I overcame the toughest of family health circumstances while creating my new product, the MediStori. My answer to Gavin was simple – back then, I felt a need to mentally escape the reality of my situation by allowing myself to tap into my creative zone, thus giving me a small chance of escapism from my “real life” situation. I first and foremost wanted to help my family, and as I explained to Gavin and the other Dragons, I had never really meant for my innovations to become a business, it just happened naturally.

But there was so much more behind that statement than met the viewers eye. 

When I answered Gavin, I suddenly remembered why I did what I did. Just like when my husband reminded me that I could do it. I had turned my idea into a business simply because of my passion to help other patients, carers and families – and I managed to succeed with my business because I had learned on a deeply personal level 1) how to survive when times got tough and 2) how to become resilient to adversity and others judgement of me.

Resilience is a word quite often bandied about when it comes to entrepreneurs, and what the world calls “heroes”.

But what is resilience? In the dictionary it is defined as “the capacity to recover quickly from difficulties; toughness.” My issue with this definition is the term “quickly”. In my opinion, there is no time limit on when one is “resilient”, but there is when it comes to “survival”. It is critical to know the difference between the two.

So I decided to write my thoughts down about my experiences of resilience in the hope that it may help other start ups. I feel it important that entrepreneurs, in particular, stick together and “learn to share, and share to learn”. For this piece, I broke down the word resilience into an acronym, highlighting the key components of what I feel are needed to survive and most of all to become resilient in the business world.

R = Reactivity

How we react initially to adversity and crisis does not necessarily mean that is how we’ll react in 48 hours from that time. My emotional reaction before Dragons’ Den was very different to how I felt afterwards. Even if I didn’t get investment I knew I would have been proud that I did it. It is so critical to pause, reflect and try to remove all emotions when making critical business decisions. Think future. If you don’t do something, will you regret it – and vice versa. If something negative happens today, how do you feel now? I always say it’s okay to have a bad day, but don’t let it be a bad week. Take some time to allow yourself be upset or angry and absorb the situation. Talk to friends, family and trusted colleagues. Then start thinking logically – that day has past, how do you feel now about the situation? Think will your decisions impact negatively/positively on others, on you, on your business – tomorrow and the day after that? Think about the words you use and the need to move forward, not backwards.

E = Empathy

To survive in the business world, entrepreneurs need to be kind to themselves, first and foremost. Upon reflection, I was so harsh on myself before I pitched in the Den. Unlike computers, humans are emotional. When times get tough, many entrepreneurs sink back into themselves and often are too afraid to discuss the situation with others because of how they may be judged – especially if they were the ones they feel could be at fault. This is one of the biggest reasons businesses can fail. Remove the unkind thoughts you may be having about yourself and allow yourself to listen to what others have to say. We can often make a “mountain out of a molehill” simply because we feel deserving of the negative situation at hand. We often internalise our thoughts and concerns. Most people we reach out to will listen, show empathy and try to problem solve with you. Others may not be so – they could be harsh and berate you for what they see as your flaws. Either way, I would say, take the risk. If you don’t ask, you won’t know.

S = Survival

There is a strong connection between survival and resilience. Survival mode gets us through each minute, hour, day. Maslow’s hierarchy of needs will say the basic needs for humans are food, water, heat, rest. I always say in today’s world, before these needs, another  component needs to be added. And that is money. Nobody can survive without it – everything costs money, even water nowadays. And that is the bottom line for all entrepreneurs. How do we make (and keep) money? Survival mode steps in when this bottom line is affected negatively and all emotional and critical thinking resources need to be applied. The important question to ask is, what is the absolute bottom line that you can tolerate that will not affect the basic survival of your emotional or physical well-being? Or impact your families lives. Overstepping this mark may impact on decision making in your business, and worse, your personal life. Resilience steps in when you know when to stop, and know when to keep on going. Resilience is about tomorrow, not today. Deep down, I knew I wasn’t taking huge risks by doing the Den: it cost me nothing financially. If done well, I could gain in every aspect, at worst, my ego would be the only thing hurt.

I = Intuition

I very nearly let fear get in the way of my dreams. Deep down I knew the Den would be okay, but I allowed negative thoughts to come in. The strongest of entrepreneurs will always listen to their intuition. What is your”gut feeling” telling you? Does something just not feel right but you can’t explain it? Or is it just fear of the unknown; fear of what people think of you; fear of failure; fear of people thinking you’re crazy? Critically and logically analyse your thought processes. Fear is an ultimate game stopper for many people who have big dreams but don’t pursue them. But are these fears real (i.e. logical and could mean the failure of your business) or theoretical (i.e. fear based meaning you are preventing yourself from moving forward). If you can’t answer these questions then go back to your inner instinct. If it doesn’t feel right, then chances are, it isn’t. For now, anyway. Apply this way of thinking for potential investors or partners too. Don’t rush in and think of the money in short term – think of the close relationship you will have on a long term basis. What are their reasons for investing and will they stand by you when the going gets tough, or will they shy away? All investors want a return on their monies, but many also have other reasons (e.g. excitement of being involved with new companies, passionate to help society etc etc). Emotional intelligence plays a huge part in business-relationship developments – for both parties. Listen to your intuition – any niggles of doubt need to be ironed out before proceeding with such commitments. I knew I got the right investor in Barry O’Sullivan – his questions and responses felt right in my gut – I also knew the reason why he wanted to be involved. Before I accepted his offer I had stated ” 1% of 100 is far better than 100% of nothing” and I really meant this. He saw the need for it, he believed in me.

L = Learning

I can’t count the number of times I was told by “experts” that my product wouldn’t work because it wasn’t technology, or that I didn’t have a “degree” so I wouldn’t be able to run my company (yes, true story!) I can’t count the numbers of times I didn’t win competitive pitches. I can however count the amount of awards I have won, and the competitions I have been successful in. Before going on the Den, I reflected on the good and the bad. One critical character of resilient people is their ability to learn from experience. Not just bad experiences, but good ones too. Reflecting on times when everything was on an upward incline, and also times when it all fell down like a house of cards. Thinking about how they reacted and turned a situation around, both personally and financially. If the same mistake keeps happening over and over again, then it is time to reflect on why this is so. Is there a cycle? Additionally it is important to learn from your market. If your preliminary research is sending you a resounding ” I like it but wouldn’t pay for it” then deeply consider where you go from here. But be aware, if it is not your potential customers who tell you this (i.e. friends, family or mentors) then consider why they are saying this. It could be that your friends and family are scared of you taking risks – it could be that potential advisers, experts or mentors have their toes dipped in other related businesses, or more simply – that they are not your target market. Research, research and research again. Listen, ask, learn – and listen again. Then take action.

I = Innovation

Resilience is also about the ability to become innovative. Apply the same processes to product development to problem resolution. Do your research; think about the objectives, the vision, the outcomes; think about the how, why and where. How are you going to communicate your message? Bringing a team around you can be critical to providing a broad spectrum of solutions to a situation. As the saying goes “there is always more than one way to skin a cat” – a horrible expression, I know, but an apt analogy for any business person. Thinking outside the box is an absolute when times get tough. As an entrepreneur, you already have the skill-sets to be innovative.  Resilience will become a pattern if an entrepreneurs creativity is applied in a different context. When in the Den you have to think on your feet – and fast! If you watched my episode, you would have seen me make a critical error because I had not interpreted Chanelle McCoy’s question correctly. I could have left it there, but I knew I couldn’t. Many would have said nothing, but I knew I had to figure out a way to set things straight. Thankfully Barry had noticed something was amiss, and this allowed me to clarify the situation but my head at the time was swirling trying to figure out how to say it!

E = Eagerness

When times are good all entrepreneurs are willing and eager to get up in the morning and make the next day better than the day before. But when times get tough this is when we can tend to put our heads under the sand (or under the duvet as the case may be!) No business, ever, has never had tough times and it is critical to realise when your eagerness to continue starts flailing. On these days, go back to the drawing board – take out the business plan. Think about the reasons why you started and the vision you have. Remember, money is usually only the outcome, it’s not the reason why. Some people want to use their money to travel the world, build their dream house (me!) or simply provide for their family. Others do what they do because they want to help others (me, again!). But to become resilient, the key to is to keep that vision in mind. It will get you through the tough days if you know your goals. I personally have a vision board over my computer and often, I look up at it and imagine it can happen one day. I then go back to my work and ensure I do what I can to achieve it. It is one of my tactics in becoming resilient to adversity. Just before walking unto the set of the Den I imagined walking into the front door of my dream house on the ocean – until reality hit me in the face haha!

N = Networks

I would always say reach out to those who can be honest with you, who will listen and may be able to help you see beyond today. The world of business will open your eyes to those who have your back, and those who don’t. Who once were friends may not be so when you dig deep enough. Try to figure out the reasons people are saying what they are saying. Is it because of their personal bias (jealousy, greed, envy, lack luster); their personal characteristics (honest, open, blunt) or your interpretation of what they are saying (perceptions of honesty as negativity). Don’t be defensive if they challenge you – think about why they are doing so. Be open to ideas, but do not ever allow someone to knock you when you are already down. Simply walk away and thank them for their time. Do think about what they said and why they said it, while being conscious of your own bias. Remember if you are defensive to someone for telling you to stop your business, then this is usually a sign you don’t want to give up! This is a good thing! But if they are telling you to consider changing your business model, marketing strategy or product lines, then listen. As I said on the Den – everyone should look back at their first product and cringe – customer feedback will be the determining factor to new ways of going forward, so listen to what they have to say.

C = Communication

Ask for help and be honest. There may come a time when you can’t communicate publicly or to the outside world (i.e. customers/partners) about the issues you are having in your business – and yet they still need to know what is going on. It is important to get advice from those who excel at communications. The same goes for legal advice. Write everything down as it is in the most blunt of manners, highlighting the pros and cons of the matter – remembering throughout how your message may be perceived by stakeholders. I have been in this situation, and particularly, just before the Den it was crucial I knew what I could/should and could/should not say. Your intuition may be to just blurt it out as it is, but often this not strategic or effective. Your companies ability to not be effective anymore may have been through the fault of the breakdown of a contract or another party – but it does not always help you to  share this with the world. As Michelle Obama says “when they go low, we go high”. Sometimes this is the most effective way of portraying your situation. Be careful with your words and expressions. Think of the big picture and long term vision of the company. Once it’s out there, there’s no turning back. The key is that you honestly communicate your issues with experts in the field – to help you, help your company.

E = Endurance

And finally, we come down to the strongest component of all successful entrepreneurs – endurance. Olympic athletes are an exemplar example for endurance – and believe me sometimes it does feel like you’re running a marathon. I couldn’t explain the adrenaline I felt after doing the Den, nor the similarities of sacrifices needed to grow the business to get to that place. Entrepreneurs will endure the sleepless nights, pushing their bodies beyond the average, sacrificing home life, finances, jobs or education – just to reach their goals. Much like entrepreneurs, athletes have coaches and trainers – and they learn every single little thing that will make them the best. They watch their competitors, learn from their teams and have a passion and belief that they can do it. They win some, they lose some. Many become resilient to the judgement of the world. Do they get disappointed? Yes. Fear the worse? Yes. Hurt themselves physically and emotionally? Yes. Many keep on going – but they too know when to stop. Resilience comes from perseverance. And maybe even, a dash of sheer stubbornness too. The key is to ask yourself how long you can endure the pains and positives that come with running a business – and when it gets to that point, don’t let stubbornness override sensibility.

So all in all, I ask myself, do I have all of these components? The truth is, on some days I feel I do – and on others I don’t. I am after all, only human.

Do I get scared? YES! Do I feel that it’s all too big for me? YES! Do I sometimes feel used by others so they can reach their goals? YES! Do I feel like the fear of people judging me negatively can be so overwhelming that I just want to stop? YES!

But…I don’t stop.

I pause, reflect and think about the reason why I do what I do.

For me, the worst thing that could happen in life is the loss of a child.

Every fear after that, is tiny in comparison. Entrepreneurs need to think about their ultimate fears; and use perspective.

Resilience comes after survival. It is what makes you not just eat breakfast in the morning because you need food, but to take that day until you reach the highest level on Maslow’s hierarchy of needs – self actualisation – to be the best person you can be. Resilience can not be taught – it can only be experienced.

I love the fact that I help people every day. I love the fact I am showing my daughters not to let anyone stop them from achieving their dreams. I am teaching them to be different, to be unique: to feel the fear and do it anyway. To be kind, honest and reflective.

This is my reason why. And it is this that makes me resilient in life, and in work.

Posted on Leave a comment

We Should All Celebrate International Nurses Day!

As we all know, every day should celebrate nurses, but every now and again, it’s good to highlight all the work that they do for us and today is one of those days – it is International Nurses Day!

Coming up to today I started reflecting on all the nurses we have met along the way during our personal journey in the health system. A few memories in particular always leave a lasting impression on me.

The first was when a nurse sat down at the side of my bed and simply held my hand as I cried upon learning that our youngest daughter needed heart surgery. Such a simple gesture but it meant a lot to me at a time when I was at one of my lowest points and terrified about the future.

The most striking memory for me was when I was in Crumlin for five weeks with our heart baby and I was told we had to move out to a different ward temporarily as other sick babies had been admitted. I told them this was no problem at all and started packing our things, but inside my heart was heavy. I was just so lonely from being away from all my family and my other children in Co. Mayo, but because I had made friends and found security in the other moms I had met on St Theresa’s ward, this had helped me a lot to get through every day. I quickly put aside my thoughts, gathered my things, and my baby, and moved into the other ward.

After I settled in however, I started to cry silently.

Little did I know that one of the nurses from St Theresa’s ward was going to pop in to make sure I was settled okay and when she did, that was how she found me, crying quietly into one of my daughters blankets. I tried to wipe away the tears and pretend I was okay, but she wasn’t having it. Guiltily I told her that I knew other babies needed the space but I was just so lonely being away from my children, and this, added to the loss of the security of my new little network of moms – made me feel…alone. I told her I would be fine, it was probably just sheer tiredness and hormones that had me upset. The nurse looked at me wide-eyed and quickly left the room. Within five minutes she came back and said that we were moving back as she had arranged a special room for us in the ward I had come to know as my new home. I couldn’t believe it.

I won’t ever forget that moment – she completely empathised with me and knew that I was just barely coping with the overwhelming stress of having a very sick newborn.

Kindness costs nothing, but meant everything to me that day.

There are so many other stories I could share, and some are just really practical things that mean a lot, for instance the time when our clinical nurse specialist in Crumlin said we could email him at any time. Now this may not seem like a big deal to many, but when you are trying to get complicated medications sorted out for your sick child, or are worried about their symptoms there is nothing like the reassurance knowing you can reach out to a specialist in their field to ask for guidance – knowing you will always get a personal response. This is not a regular occurrence in the health system but that is often not down to the fact that nurses don’t want to do it, sadly it occurs simply because of a lack of resources or IT in their hospital.

This list goes on and on.

I also learned a lot from nurses by bringing MediStori into the public health system.

The professionals who loved our patient held record the most were, you named it, yes, nurses.

They often were the first and last point of contact with patients, carers and their families and they knew just how overwhelmed people could be when being asked questions about tests they had, previous medical history and managing medications. They knew MediStori could help so many. And they were more than happy to promote it and educate patients on how to use it and bring it back into clinics. They knew that if they did this, it could take a huge amount of stress from patients, in the home.

This is what a nurse does best.

They provide a real human connection and care in more ways than just medically. They look at people holistically with an aim to understanding their needs. They work with doctors and many, many other health professionals – they keep the wheels turning.

So today for International Nurses Day, I personally want to say thank you to all the nurses and midwives who have shown me kindness, educated me, hugged me, hugged my girls, or even just held my hand in times of need.

I’m sure I’m not the only one who feels this way so I feel it would be great if we could show our kindness and gratitude back in return!

If you have a story you would like to share by means of thank you to our nurses, please leave a comment below or on our Facebook page. Additionally, you can go on Twitter and use the hashtag #celebratenurses

 

 

 

Posted on

Leaders Need Encouragement, Experience & Effective Education

So, it was just after finishing my Leaving Certificate [way back in 1999!] when I became ecstatic to learn that I was accepted into college to study electronic engineering. I was so eager to get started but unfortunately this feeling was short-lived as I had taken very ill and had been hospitalised for a length of time. It was then, after much reflection and debate, I decided, along with my parents, that it would be probably be best for me to take a year out to heal before I put myself through studying again.

It’s funny though how life has its own path laid out for us because it was not long after this, that I met the love of my life – and our little family started very soon after. College was the last thing on my mind as I cared for and minded my children.

I grew up as a mom, and as woman.

During this time, though, I was always determined to be involved in my community also. I became a Leader with our local Scouts; I led out as chairperson on a massive youth project along with our young people, and local community; I became a member of our school’s parent’s committee and I worked with an amazing team who developed an online platform, with over 10,000 members, for those who were feeling depressed and/or suicidal [EasySpeak]. I regularly fundraised for charities of which had added personal value to our lives; as all three of our children have chronic conditions. Additionally, I made it my mission to continue my education when I could, through the many courses available in my community.

I have always had a passion to learn, and to share, knowledge.

Then one evening, a conversation came up with my husband – we discussed the dreams we wanted to fulfill in our lives. It was funny how the first thing that tripped my tongue was that I had always wanted to get my degree. He simply looked at me – and told me to “just go for it!” Excited and eager again, yet this time apprehensive, as I work full time as a social entrepreneur, I went about looking for areas in which I was interested in. I knew my “engineering” brain was still intact but I also knew my passion had changed with regards to how this skillset could be applied.

I reflected on my past experiences as a volunteer, and as a leader. I remembered as a young person I would often “look up” to adult leaders, and I would absorb everything they said, and did.  Throughout these experiences, and from very early on, I also recognised that I could identify the differences between good, bad and mediocre “leaders” and often witnessed good leaders be overshadowed by individuals or groups who were afraid to breach the status quo; even if the outcomes would be in the best interests of the community.

And so, after this soul-searching exercise, I knew then that I wanted to learn more about the practicalities and theories of leadership; and specifically, for me, with regards to healthcare. I also knew I would need something that I could work into my hectic schedule – and something that I could apply to my daily activities. And most importantly, that it would apply to my vision to change our health service.

I do believe in serendipity because it was strange what happened in the next few days. Out of the blue, a previous leader of our youth committee contacted me and told me about a new online programme that was starting out that she thought would be good for me to do.

Immediately interested, I went online and applied to meet the coordinator – and from there on in I was bought in. I learned that this programme, ran by an amazing team from An Cosán Virtual Community College, was a set of Special Purpose Level 7 Awards that would lead me to getting the proposed Degree in Community Education and Development.  This course, over three years, would all be achieved through online classrooms, and most importantly for me, the modules were exactly what I cared about – ranging from modules in “Community Leadership” to “Citizenship & Social Action” and “Technology Enhanced Learning” to “Transformative Community Education”.

I felt that being part of this programme, I would be able to meet with like-minded people, and through getting to know them, together we could make a difference in our communities.

On my first day of induction, I was admittedly nervous; unsure of the technology platform; unsure if I would be “good enough”; unsure of the people who I would meet along the way. However this was all put to rest when the team on the day rang me to help me with set-up, and then proceeded to reassure me when my microphone wouldn’t work. Even with the barrier of not being able to speak, the learners and tutors introduced each other and we all conversed naturally – using the power of positivity; the power of technology (and the power of online emoji’s!) The lightbulb moment which showed me that this course was for me, was when the opening of the course began with a beautiful poem called “I Look at the World” (Hughes, 2009)

From this, I identified that there were no boundaries other than in our own minds, and if we worked together, as leaders in our own right, anything could be achieved.

Our first task was to personally reflect on our first session. This “reflection piece” stirred up in me the importance of implementing this practice in “real-life” scenarios. If we didn’t reflect on our work, how would we know what needs appreciation, changing or improving upon. We were also asked to explore three inspirational videos which shared various people’s thoughts on leadership. Each speaker shared a different perspective of leadership. One discussed the power of the “follower” following the leader, and role reversal of same); another described the importance of emotional closeness and its impact on obedience to authorities; and one other discussed the impact one person can have on one other person – that leadership it is not about the quantity of people’s lives we change, but the quality of changing just one person’s life.

This last video caused me to personally reflect and it brought me back to a time when I felt I had impacted on a person’s life. 

“I was an administrator of an online forum for people who were suicidal. A young boy messaged me, telling me he was gay and didn’t know what to do. Told me how he was so scared of what people thought of him. I listened. I empathised. I told him I cared. I directed him to services who could help him, and every week he would tell me how it went.

Eventually, the messages went quieter, his posts became more positive, and I knew he was getting stronger.

Then, a few years later, out of the blue, he contacted me.

He was super excited; telling me that because of me he was going to do social studies in college – he wanted to change loads of people’s lives, like he felt I had done. I was so very happy for him and proceeded to give him some advice I had learned in life.

Told him to imagine a person in a bad mood. And if that person stayed in that bad mood they could go home to their family and upset everyone else also. But, if someone interacted with them during that day, to turn that mood around, then that person would more than likely go home in good form; therefore, impacting positively, not negatively, on the whole house.

I told him that if we just changed one person’s life, we could change so many more people’s lives. I told him to aim to

“Change the World, One Smile at a Time”.

I believe leaders should reflect often. I also feel people shouldn’t feel they are not leaders just because they are not changing the “masses”. Leaders should look at their personal achievements and not be afraid to admit that they did good – if we can tell others they can achieve anything, then why can’t we admit to ourselves, we can too! It is also so important that other leaders support one another too. Upon reflection of my leadership skills, I believe my honesty; my ability to communicate and empathise; my commitment to him and my passion to help and protect him so he wouldn’t set himself up to fail, but to lead, helped him believe in himself again. I really do believe in changing one person at a time. And we, as leaders, have to believe we can do that.

I always say, we all here to not just help each other, but to help ourselves grow too. And the only way to do that, is to be open, honest and kind.


About An Cosán

To learn more or contact An Cosán see: www.ancosanvcc.com 

You’ll also find their team and their social community via the following links or by using the hashtag #LoveLearningVCC

 facebook-badge  twitter-badge linkedin-badge icon-youtube

An Cosán VCC Current Academic Year: Semester 1 – 2016

A full list of programmes which will be available in the coming months is available here with deadlines in the next week for next two programmes. Details of the upcoming courses starting in November are outlined below.

  • Transformative Community Education (QQI Level 7) – commences Saturday 12th November – Application deadline: Wednesday 02/11/2016
  • Learning to Learn at Third Level (QQI 6) – commences Wednesday 16th November – Application Deadline: Wednesday 02/11/206
  • Introduction to Community Drugs work (non-accredited) –  Launching soon

How to Register?

Follow this link which will bring you to our registration page: https://ancosanvcc.com/application-form/

Posted on

Unhealthy Competitive Cultures Can Impact Negatively on Patients

My Problem

As a carer to my dad leaving hospital after a nine week stay, the doctor shows me his prescription – a whopping twenty two separate drugs are on his list – many of which are not pills but are inhalers, injections, patches, liquids and gels.  Items which a pillbox cannot help me with. I quickly realise that I am going to need something to help me manage these medications at home so I ask the doctor can he give me anything to help. He looks at me forlornly and apologises as he says they don’t have anything like that available from their hospital. He recommends that I go online as there may be solutions available to help me there. I quickly try to access the internet in the hospital from my phone only to realise that there is no internet (seriously!) so when I go home I type into Google “medical health records”.

My Confusion

Upon hitting the return key, I see this particular phrase showed 30 million results

Surprised with this, I decide to change my text and type in “Medicine Health Record” – it shows 18.5 million results. I try to narrow it down:

Medicine Record – 284 million; Medicine Diary – 20.8 million; Medicine App – 151 million results; Medicine App Ireland – 1.26 million results

google-search-medical-records

At this stage, frustrated and after using numerous other phrases, I realise time is against me (my dad is coming home the next day) and so I start panicking. After scrolling through so many different solutions available online, I am none the wiser and know that I do not have the time to figure out 1) which one would work best 2) how to use them or 3) which one would work for my family also. 

So, I resign. I find my own little notebook to track the times, types and doses of my dad’s medications. Little did I know that this notebook, would end up saving my dad’s life and upon realising same, after four years of development with over 200 health professionals, patients and carers, it would become a project known as MediStori.

My Personal Bias

Okay, so you may think I am biased when it comes to the topic of electronic versus paper based records in health systems, because of my own project, but I am here to tell you this is not the case, not at all. Using my personal experience as above as an example, it shows that I would have had no problem in using an electronic record to help me with my problem. Technology was the first thing I was recommended to use, and the first thing I went to, to help me. I just didn’t adapt any of these technologies because of the sheer volume of solutions made available to me. I was completely confused as to which to use, and time was not on my side – as it the case for most patients and carers. I had always intended to develop my project digitally. I just always wished the health professional knew something of which he at the time felt comfortable enough to recommend to me. I still couldn’t understand why there was no one amazing patient health record that everyone knew about. 

This blog, however, is not about just about my views on health records, I use this as an example to show what the reality is. This post is about my views on how I feel unhealthy competitive cultures and lack of user involvement within public and private sectors can disrupt and hinder connected health in our systems.

My Experiences

The situation of trying to track medications was not the first time this had happened to me. I am unfortunately extremely experienced in using health services and self-managing conditions, because not only did I provide care for my late dad, but I also provided care for myself and others in my family. Excluding my work in healthcare over the last four years, I have used over twenty separate health services in the past ten years across the country; I have engaged with over 12 specialists for my children and over 15 specialists for the rest of my family. I have used over 8 hospitals and countless GP practices and pharmacies.

And what have I noticed?

Every one of these services do the same basic things BUT in completely different ways. Whether this is related to the way I have to check in upon arrival; the way they provide customer service; the way they communicate; the types of meals they serve; the information they provide about conditions; the management of waiting areas or even how they prescribe drugs – they are all done differently.

And this, for me, is a problem.

Living with Conditions

Medicine usage in our life is part of our norm. Appointment management and communication of health information is the bane of our lives. Too much information is not what I need – I just need accurate, two-way and timely information. I also do not just need information – I need something to help me practically manage treatments, medications and symptoms in the home. As a patient and carer, upon attending health services, I am already anxious about my health visit – the last thing I need is to start learning how to navigate my way around a new system, a new way of doing things, each and every time.

Disconnected Health Information 

Confusion caused by the communication of health information has to be the biggest problem for me as a patient and carer. Here are some examples –

“I remember once receiving a lovely little white folder for my daughter from her specialist hospital in Dublin. It was specifically made by the hospital, alongside a charity – for her specific condition. I could log her growth charts, her feeds, her diagnosis. I loved it. About two months later however she ended up being admitted to our local general hospital. I took out her diary to show her health professional but I was told to put it away because they didn’t use that diary there – I was told it was only for use with the specialist teams in the original hospital. Truthfully, I was really embarrassed at the time. I put my diary away and I never used it again after that, as she was mainly treated in the general hospital from that time onwards. I also realised as time went by and she developed other conditions that realistically this diary was only disease specific. It would not suffice to manage the symptoms that arose from her asthma or hypermobility. I felt it would be a good idea if there was some diary which would cater for a person’s personal information and needs first, and then specific disease diaries could be implemented as the need arose – building a health record from birth to end of life, not gender, age or location specific.”

“On so many occasions, I became so frustrated with the fact that none of our hospital records were shared with one another – I would have to repeat information over and over again, to different health professionals each time. I would be asked questions about symptoms at home and often found it difficult, with limited time, to recall everything. Many times I left the hospital forgetting to say important things, and only remembering afterwards what I had left out. Often, I left appointments feeling confused and still concerned. Many times I was afraid for other family members to bring my children to appointments as they wouldn’t know the information. The burden was all on me.”

“I do not know how many different times I have gone to a hospital and seen loads of different types of leaflets – on the same condition! It is bad enough I am trying to absorb information from our specialists, but it’s even more difficult trying to figure out what information to trust from leaflets designed either in house or by non-profit or private companies.”

“Don’t get me started on medications – generic, branded – variations of branded drugs. I get so confused when I’m handed the same drug with a different name, bottle or format in how to administer it.”

Technology Users

I am a 35 year old mum – and am extremely tech savvy. I personally could not do my work; I could not connect with people in the industry; I couldn’t have won all my business awards without technology. On a personal level, I could not pay for my parking; catch up on TV shows or even do my shopping without technology.

I don’t just love technology; I absolutely need it. Without technology, I could not share this document with you. But, and there is a but, I also love paper. Even in college, I did not like reading books on my tablet, and when researching documents, I always printed them off and used a highlighter when taking notes.

I often find that health professionals are the same. They prefer if I print photos of rashes or birthmarks than show them on my phone. If I have questions or information written in front of me, they are not sitting there frustrated while I scroll through my phone looking for same. And they can photocopy it if required.

Reality Check

The reality is – this is not just me. 

International internet marketing guru Seth Godin talks about the benefits of a one sheet medical history diary and Bryan Vartabedian a pediatrician at Baylor College of Medicine/Texas Children’s Hospital and one of health care’s influential voices on technology and medicine responds with: 

“As much as it kills me to admit it, there’s a certain amount of wisdom to this.  And not novel, really.  Patients of mine have been doing this for years.” 

Even the RCPI in the UK decide not to abandon their paper record even though they’d developed an electronic version:

ePCHR

“There is no intention to withdraw the paper PCHR as it is important that parents have a choice in how they access information.”

Connected Health

The reality is that it is not that hard to connect health information. The RCPI’s little booklet is a perfect example of this – even if it does only cater for children. This is because we actually do have one common denominator in our health ecosystem which can deliver this. 

This is the patient. 

They are the only one who sees every health provider relative to them. They know what happens to them at home, at their last clinic, at their last admission. They know their symptoms. And how they manage their medications and treatments. In the cases where they don’t know, you can be sure that their carer does.

So now that we know that we have one common denominator in our health ecosystem why has nobody done anything to use this amazing connector – to connect our system? Instead the system still wants to build around them. And instead of thinking simple – it gets more and more complex the more people see an opportunity to get involved – and we are all left with so many solutions, but not knowing which one is best to use; or for health professionals, which one is best to recommend. 

Culture Change = Connected Change

Healthy competitive cultures are when people who really care about what they’re trying to achieve, and work with others to get the job done. They join their brains, their ideas, their teams, their money and their solutions together. And the competition they have is simply to strive to perform better to increase positive patient outcomes – it is not about winning. These people are leaders in the fields of healthcare. An excellent article from the International Journal of Health Policy and Management explores this in more detail, highlighting that:

“..Competition is more and less likely to be a good tool to achieve benefits, rather than whether or not it is “good” or “bad,”

Unhealthy competitive cultures are when people or teams try to outdo one another, and look at the negatives of other solutions, for personal gain – be it profit, pride, positions or power. Often, these individuals take someone else’s idea and try to replicate it. And while in the business world, this is natural, in healthcare, this should not be the case.

People need to work together for the same vision – to reform healthcare as we know it – together. Yes, choice is good, but I stand by my point: unhealthy competitive cultures can impact negatively on patients. We need these 4 “P’s” to be changed and implemented using the P4 Medicine Institute Model: Personalized, Predictive, Preventive, Participatory.

So I am striving forward to collaborate with other like minded individuals and my call to action is this…

If you really say you deliver person centered care, with the patient truly at the center, will you try to join forces with others in your field with an aim to create a “super solution” that connects all health information, and more importantly creates a unique movement of personalised, predictive, preventive and participatory care? 

Will you do what you can to work with and help patients and carers like me, change our health system together?

If so, let me know how you get on with your journey of collaboration. 

Because remember, we are all here to either get better, or to help someone else get better.


Other articles related to healthy and unhealthy competition: 

Sports: https://www.howtolearn.com/2012/11/healthy-vs-unhealthy-competition/

Business: https://qideas.org/articles/when-is-healthy-competition-unhealthy/

Religion: https://www.theologyofwork.org/the-high-calling/blog/competition-healthy-or-unhealthy-constructive-or-destructive

Leadership: https://growingleaders.com/blog/competition-healthy-unhealthy/

Parenting: https://www.alfiekohn.org/article/case-competition/


Bio: I am a patient myself with multiple conditions and am a mum of three daughters who have each had complex illnesses including congenital heart defects, juvenile arthritis, hyper-mobility, asthma, psoriasis, sporadic blood pressures and gastrointestinal disorders, to name but a few. My husband suffered a TIA in 2014; I cared for my late dad who was on twenty medications and my mum currently also has a rare condition.

Posted on

Being a Carent – a parent and a carer all rolled into one!

Being a “Carent” – a Parent and a Carer Combined

As a parent we will all at some time have to deal with the coughs, colds, vomiting bugs and the many cuts and bruises that our children will entail as they grow up. We will have to deal with our crying child as they get their first vaccinations – retracting with a pain in our own tummies as we hate to see them in pain.

Even the smallest illness will stress a parent out to no end – never mind the sleepless nights, and GP visits – it is just horrible when our children are unwell.

But when a child is diagnosed with a chronic or rare condition, this is when the “normal” role of a parent changes significantly.

I will never forget the first day I had to tube feed my five week old daughter. Drawing back fluid from the tube to ensure it was not in her lungs, but in her tummy. The fear that I would get it wrong, never left me. Terrified of drowning her with her own feed.

Recalling the day I asked the consultant would she survive her surgery – and him telling us that she may not and we would have to prepare for this. Having her baptised in the hospital.

Waiting on the news that she survived her heart surgery. Seeing her in ICU. Fiery by nature at her young age she needed soft baby “handcuffs” to stop her pulling out her breathing tubes.

So helpless, so vulnerable – both of us.

Taking her home, I recall the panic of giving her medications – one of which had to be given exactly twelve hours a part to keep her heart rhythms in order. Changing her bandages after heart surgery. So afraid to hurt her frail little body, afraid she would get an infection.

Having to tell family and friends they couldn’t call to see her as she was too high risk of catching bugs. Some ignoring me, and her ending up with bronchilitis – leading to a two and a half hour ambulance journey to Crumlin from Mayo, which normally should have taken four hours.

Seeing her travel with oxygen levels dropping rapidly and being suctioned to clear her little lungs.

Being sent home again for me to care for her.

Weighing her daily to make sure she was putting on weight, but not so much weight that fluid could be accumulating in her lungs.

Listening for the alarm on her apnoea monitor when she was sleeping, just in case she stopped breathing.

Feeling isolated, scared and alone. Feeling incapable. Wondering if I was strong enough to do this – to care for a sick child and get her to full health again. She went through a tough first few years of her life – asthma and hypermobility following soon after.

But with her fighting spirit and my will to get her to full health, we did it, with the help of many health professionals, friends and family.

Then the swine flu struck our home in 2009.

Myself and our three daughters went down like a ton of bricks. I have never felt as ill in my whole life, eventually leading to me ending up in hospital, but I had to keep going to make sure they were cared for. I allowed no-one near our home in those two weeks for fear it would spread further to others. We informed the school, they closed it down on the advice from the Dept. of Health.

Following this flu, it triggered complicated symptoms and chronic conditions in my other two daughters.

Leading to me, three years later, having to inject a chemotherapy drug into my twelve year old’s tummy to treat juvenile arthritis.

The fear of how she might react to this toxic drug terrified me, as did the fear of causing her pain. It is one thing when a doctor sticks a needle into your child’s arm – this is brought to a completely different level when you have to do this to your child yourself.

And then came the day when I got a call about our eldest daughter, telling me to go straight to Crumlin as they felt she had tumors in her adrenal glands.

I stood, phone in hand, in my local hairdressers, in shock, and just burst into tears. Overwhelmed, scared, angry.

And yet, through all of this, I did it. I did not know my own capabilities or my own strengths. I had to take everything day by day.

But, I was lonely.

I knew I didn’t fit in with other parents.

I was scared that my children, each with autoimmune disorders, could catch bugs which could be detrimental to them. I was constantly on edge.

Other parents just didn’t understand this.

My life was a world from theirs – constantly in and out of hospitals, and sleepless nights. I felt I couldn’t hold normal conversations with people as I was consumed by health issues. I didn’t go out or socialise. I didn’t work. What could I talk about to people that they would be interested in?

I realised that being a parent of a healthy child, and a parent of a child with a chronic condition were two very different things – we suddenly are carers – often performing medical tasks that health professionals are trained to do.

I had become a “carent”. A parent and a carer combined.

It took me a long time to admit this to myself, as I wanted to be “normal”. I wanted to scream to the world that I was like any other mom or dad. But I also needed to realise that our lives were different. And that the best way for me to get through it was by talking to others in the same situation.

I learned that I was not alone when it came to the constant worry, especially when my gut instinct kicked in.

That I was not alone when it came to feeling like a “neurotic” parent when trying to advocate for a child who could not speak.

That I was not alone when it came to feeling liking a failure when my children caught bugs, again and again.

That I was not alone in hearing parents of healthy children tell us that our kids “look great” when their bodies were so sick on the inside.

That I was not alone hearing family members tell us that if we” changed their diet” they could be cured.

That I was not alone when people said it could be “psychological”.

That I was not alone when it impacted on all our children when one got sick.

That I was not alone when it impacted on my relationship with my husband.

That I was not alone when it impacted on our finances.

I learned that it was not just me.

All “Carents” go through very similar experiences, at different times in their child’s life.

I simply learned that life happens. And it’s how we deal with it that matters. With the support from others.

Reach out to your spouse or partner – talk to them – often they are simply coping in a different way. If you are a single parent reach out to your friends, siblings, family – they too cope in different ways. Reach within yourself and recognise that you have the strength to do it. Take it day by day.

For all the parents and guardians out there who are caring for sick children, I want you to know that it is not only okay to be different, but it is imperative that we relish in this differentiation.

Our children will grow up already knowing they are different to other kids, and the best way for them to strive and not feel isolated is through learning by example, from us, their parents.

Reach out to others who have walked similar journeys – ignore the ignorant comments made by others.

Realise that they have not walked in your shoes – thankfully – nobody wants a sick child – ever.

But when it does happen, realise that you as a parent, as a guardian or as a simple human being, can do this.

And it doesn’t have to be alone.

Posted on

Day in the Life of a Patient Attending an Outpatient Clinic

I arrive at a hospital I haven’t been to before.

I have been told in my appointment letter to go  directly to the outpatients desk to let them know I’m here.

I look around – there are three reception areas – but which one is  for outpatients?

I logically choose the one nearest the front entrance, wait in a queue for five minutes but am then told that this is the reception area, and that I need to go to the one near the coffee shop. Looking at my watch (as I’m now afraid I’ll be late) I head over to the queue that has over ten other people waiting also to sign in. Eventually, ten minutes later, I give my details to the administrator and am now given new directions as to how to get to the clinic. I try to absorb everything she is saying and nod that I understand. I try my best not to forget.

But I do.

I stop and ask a nurse along the corridor for directions. She kindly helps me, but I can tell by her expression that she is trying to get somewhere in a hurry – probably to tend to a patient – I hate having to ask.

I eventually arrive at the waiting room (15 minutes late through no fault of my own) but am unsure if I should just sit there with my file, as a note on the clinic says not to knock on the door. I ask another patient. They tell me that a nurse will come out to me to collect it. I sit back waiting, noticing that Jeremy Kyle is showing on the TV. Not interested, and slightly concerned about the content being shown as young children are in the room, I go for my phone to keep me from boredom.

Only to find there is no Wi-Fi available in the hospital.

There are no magazines or newspapers – only books for children. I would love a cup of tea, or even a glass of water, but I can’t see any machines nearby. I know I am in for a long wait.

Ten minutes later a nurse comes out and takes all the files from various patients. I wonder will we be seen in order of the files being received, or by the times our appointments were at. Either way, I’m here now and I prepare myself for the long waiting period I have now become accustomed to through using public health services.

I see an elderly lady get wheeled into our waiting room – she has obviously just been in A&E or been up on a ward. The porter takes her file, knocks on the door, explains to the nurse her situation and then leaves her there to tend to other patients. I feel embarrassed for this lady, being left in a bed in front of everyone.

Thankfully she is seen within the next half an hour, and the porter comes back to collect her.

An hour later, I now really need to go to the bathroom – but am afraid to leave my seat in case I am called. I ask another patient could they listen out for my name and could they explain to the nurse my situation. I have learned that patients often help each other out.

I see a mother with a disabled child come in, there are no seats left. I offer my seat up.

Ninety minutes after my appointment time, I am now called in. Frustrated and now exhausted from boredom [and standing], I still put a smile on my face, as I know it is not the nurses or doctors fault.

I have a few questions written down to ask the doctor but I am now acutely aware that there are many more patients to be seen.

I meet the doctor, and it is not the consultant I thought it might be – it is his registrar. I am disappointed, but don’t say anything. Upon shaking hands with him I notice that the doctor seems rushed. He doesn’t make eye contact or introduce himself.

At this point, I make a decision to not to take out my questions but instead try to remember what I had wanted to ask. I feel like I am adding to the chaos of this doctors day. I feel guilty.

He asks me questions about previous appointments – I panic as I thought he would have them in his file. I am told that hospitals have different files and the information doesn’t transfer over. I try my best to remember dates; tests I had done and which consultants I had met previously. A nurse is sent off to retrieve previous information from my GP – it is not in my file. She comes back with a Fax document.

The doctor takes all of my information down, not looking at me as he does so. He asks me questions about my own and my family history – I try my best not to leave anything out. I suddenly can’t remember what the name of one of my medications are. I feel embarrassed.

The doctor moves on and proceeds to examine me quickly.

He tells me I look good and once I remember my medications he says that he will increase one of them. He gives me a new prescription. At this point, I don’t feel strong enough to tell him that, that medication makes me feel ill, meaning I often don’t take them. I proceed to tell him I regularly have pain in my knees. He tells me to keep a pain diary, but does not give me a diary of any sort. I just take his advice and walk out of the room – ten minutes later.

I go the reception area for my follow up appointment. I am given a date for six months later.

Before I leave the hospital I can’t find the parking ticket machine. I again ask the receptionist. I pay €7.50 for my two hours time in the hospital.

When I get home I go to fill in my new appointment time in my calendar. I notice we have a wedding on the same day. I ring the hospital back only to find all dates have been taken by now for that month and they can only give me a new appointment for two months after that time. At 8 in the morning. I have to travel from Mayo to Dublin. It will be an early start. I go about getting sheets of paper to design a pain diary of sorts.

Later that day, I pick up my new prescription from my pharmacist. I am told that I cannot take that dose, as it’s too strong for me. The pharmacist rings the hospital to clarify the situation.

I ring my husband in work and tell him the doctor said I’m fine. My husband is happy about this. But I am not. I just don’t feel reassured.

The next week, I again end up back in my GP’s office asking him what I should do. I am now referred to see someone else. He adds an anti nausea drug to help counteract the sickness I get.

I somewhat now feel reassured that I have been listened to.

But why did it take for my GP to help me feel this? Was all the time, stress and worry necessary? Could these issues ever be resolved?

Absolutely.

And here are a few thoughts of my own on how I think it could be done with minimal cost, time and efforts.


Problem 1:“I look around – there are three reception areas – but which one is  for outpatients?”

Solution 1: Signposting or even lines and markings on the floor would help here. A map on the appointment letter could also help.

Cost: Minimal

ROI*: Save time for receptionist; ensures patients are on time for appointments, reduces stress for patients and carers. 


Problem 2:“I give my details to the administrator and am now given new directions as to how to get to the clinic. I try to absorb everything she is saying and nod that I understand.”

Solution 2: Again markings on the floor would help (i.e. follow the blue line until you get to Clinic 1, 2, 3…) or again even a little map would help. If the receptionist could ask the patient for a read back this would be helpful to ensure the patient does understand.

Cost: Minimal

ROI: Save time for health professionals being asked along the way; reduce stress for patients and carers.


Problem 3:“I am unsure if I should just sit there with my file, as a note on the clinic says not to knock on the door.”

Solution 3: The note on the door could say that a nurse will come out to you.

Cost: Minimal

ROI: Reduce unnecessary communication issues – especially required for those with limited communication abilities. Informed patients = better outcomes for all.


Problem 4:“I sit back waiting, noticing that Jeremy Kyle is showing on the TV…there are no magazines or newspapers”

Solution 4: A health and well-being talk show or small snippets of appropriate, relevant information for the patients attending that clinic could be aired, such as local resources, services or treatments – or even ways to manage medications etc. Daily newspapers and magazines from the hospital coffee shop could be distributed. Even notepads for patients to write questions or notes prior to their appointments could be made available.

Cost: Minimal – Low

ROI: Informing patients of resources can empower them to seek these out instead of having to ask health professionals for same. Boredom can lead to tension, thus leading to angry outbursts at times so alleviating this will create a more relaxed environment.


Problem 5:I would love a cup of tea, or even a glass of water, but I can’t see any machines nearby.”

Solution 5: Install a water or coffee/tea machine – this will create additional revenue for the hospital.

Cost: Mid

ROI: Ensure patients aren’t dehydrated (important for well-being/blood tests); creates a relaxed environment and reduces stess. Hospital can gain revenue on vending machines.


Problem 6:“There is no Wi-Fi available in the hospital.”

Solution 6: Install publicly accessible Wi-Fi! Opportunity here to promote hospital, local resources through an app.

Cost: Mid – High

ROI: Reduces boredom thus reduces tension and stress. Stress can also lead to false high blood pressure readings. Having appropriate information pushed through this system could educate patients and carers. Also may allow patients have access/input to medical apps.


Problem 7:I wonder will we be seen in order of the files being received, or by the times our appointments were atI see a mother with a disabled child come in, there are no seats left. I offer my seat up.” 

Solution 7: A simple ticket system could help here, or again this could be written on the note of the clinic door. Nurses could inform patients to come back at a certain time and they could feel free to use the bathroom/get coffee/tea etc.

Cost: Low – Mid

ROI: Ticket systems work very well and everyone feels it is fair. It also frees up space in the waiting area.


Problem 8:“I feel embarrassed for this lady [in the trolley], being left in a bed in front of everyone.”

Solution 8: If it is just for a clinic review then anyone who is in a trolley should be seen where they are placed, or later/earlier clinic times given appropriately. It is a patient safety risk, for them, and the patients in the room, to have them in an exposed environment. It also takes away dignity and respect of the person in the trolley.

Cost: Minimal

ROI: Reduces patient safety risks thus reducing unnecessary infections, medications etc.  Saves time, money for hospital. Reduces need for porter. Increases dignity for patients.


Problem 9:“Ninety minutes after my appointment time, I am now called in. Frustrated and now exhausted from boredom [and standing], I still put a smile on my face, as I know it is not the nurses or doctors fault, I still smile. Upon shaking hands with him I notice that the doctor seems rushed.”

Solution 9: You don’t need stats to know that waiting time for patients in public systems is usually over one hour! Increasing clinics, appropriate management of times [and sticking to them]; chronic clinics separated from acute clinics or having weekend clinics can all help reduce this waiting time. Having no seats means patients are left standing which can increase blood pressure leading to possible false readings.

Cost: Mid

ROI: Doctors and nurses can spend more time with patients. Reduce stress and risks  for them associated with being rushed. Show true blood pressure readings. Patients not being left feeling panicked can create a more relaxed, engaged environment – often leading to more honest and the transfer of accurate information. Better chances of appropriate diagnosis. Saves money, time and stress.


Problem 10: “I have a few questions written down to ask the doctor…at this point, I make a decision to not to take out my questions”.

Solution 10: In the waiting room notepads [as mentioned above] and recommendations by health professionals to write questions down prior to appointments can aide in this.

Cost: Minimal

ROI: If patients have questions to hand when talking to health professionals, they can leave feeling more reassured. The number of questions can be limited at times of increased time pressures. Reassured patients = better self-management; less unnecessary appointments, miscommunication and stress. Health professionals can make the most of their time with patients.


Problem 11: “I meet the doctor, and it is not the consultant I thought it might be – it is his registrar. I am disappointed, but don’t say anything.”

Solution 11: Having a folder with the various health professionals and their bios/backgrounds available in the waiting room can help patients feel reassured about who they are seeing.

Cost: Minimal

ROI: This can prevent concerns patients may have about the health professional looking after them – often patients feel the “top consultant” is the best and can be untrustworthy of “junior doctors”.


Problem 12: “He [the doctor] doesn’t make eye contact or introduce himself. I feel like I am adding to the chaos of this doctors day. I feel guilty.”

Solution 12: Basic training with health professionals on communication and time management can alleviate this issue. Providing self care therapies and services for health professionals can help them better manage stress. Doctors and nurses feel guilty too.

Cost: Low – Mid

ROI: Happy staff = better outcomes for patients. Better outcomes for patients = reduction in money, time, resources and stress.


Problem 13: “He [the doctor] asks me questions about previous appointments – I panic as I thought he would have them in his file. I am told that hospitals have different files and the information doesn’t transfer over.  A nurse is sent off to retrieve previous information from my GP – it is not in my file. She comes back with a Fax document.”

Solution 13: Effective integrated IT solutions across the system would help with the efficiency of the flow of information. FAX systems replaced with e-communication tools.

Cost: High

ROI: Having accurate information to hand is essential part of the diagnosis and treatment process. Patients cannot be expected to remember everything and they may not have test results to hand. Appropriate and timely diagnostic and treatment is the key to proactive care and can prevent unnecessary medications, use of resources and waste of time. Save time, money and resources. Better patient safety outcomes. Saves nurses having to leave their stations to retrieve FAX’s.


Problem 14: “I try my best to remember dates; tests I had done and which consultants I had met previously…he asks me questions about my own and my family history – I try my best not to leave anything out. I suddenly can’t remember what the name of one of my medications are. I feel embarrassed.”

Solution 14: There is always information patients will have that health professionals may not have – especially if it is related to self management and care in the home. A simple health organiser, app or diary can help patients capture information to have to hand for appointments. This should be recommended at the point of care by health professionals, and should be easily recognisable across the disciplines.

Cost: Low – Mid

ROI: When patients have accurate information to hand more informed and accurate decisions can be made by health professionals. It also aides in better self management and care in the home. Integrated care is about needs, not disease, age or gender. Simple health organisers or PHR’s can effectively reduce unnecessary readmissions, appointments, medication non adherence and so much more.


Problem 15: “Once I remember my medications he says that he will increase one of them. At this point, I don’t feel strong enough to tell him that I’m not feeling good and that, that medication makes me feel ill, so I often don’t take them. I also tell him I regularly have pain in my knees. He tells me to keep a pain diary, but does not give me a diary of any sort. I just take his advice and walk out of the room – ten minutes later…Later that day, I pick up my new prescription from my pharmacist. I am told that I cannot take that dose, as it’s too strong for me. The pharmacist rings the hospital to clarify the situation.

Solution 15: Health professionals could have triggers in their IT systems to help them remember to ask patients if they have issues with medications or are there any contraindications. Additionally, asking patients to note their concerns with medications prior to the appointment could be helpful. E-prescribing can be particularly effective here – ensuring medications are reconciled at every point of care. A trained pharmacist could be placed in outpatient clinics to discuss medications with patients. Ten minute appointments are often not appropriate to capture all the information required, and to then administer treatments or diagnosis. Proper time allocations should be considered in relation to the needs of the patient. Often patients are asked to keep diaries but are not given one, meaning they have to devise or resource one themselves – additionally meaning accurate information from them may not be captured upon return to clinics. Simple pain diaries (paper or electronic) devised by health professionals could be developed to ensure appropriate information is recorded, these could be given to patients at the point of care.

Cost: Minimal – High [depending on solutions]

ROI: If patients are concerned about their treatments, or adverse reactions, often they won’t take them. This contributes to medication non adherence**. Additionally, they may not disclose this to health professionals as they may be concerned that they will get in trouble. Open conversations and recommendations by health professionals can greatly reduce these issues. Effective medication reconciliation between hospitals and communities is key to ensuring patients are safe. IT solutions can greatly impact on the saving of money, time..and lives. Spending more time at a first consultation can reduce unnecessary follow up appointments or readmission, and this can save time in the long run.


Problem 16: “I go the reception area for my follow up appointment. I am given a date for six months later…When I get home I go to fill in my new appointment time in my calendar. I notice we have a wedding on the same day. I ring the hospital back only to find all dates have been taken by now for that month and they can only give me a new appointment for two months after that time. At 8 in the morning. I have to travel from Mayo to Dublin. It will be an early start.”

Solution 16: At the point of making the first appointment the receptionist could give patients time to look in their diary or phone to see if there are any clashes. Additionally, their IT system could trigger a few quick questions to ask patients or carers such as what is the best time in the day; is there appropriate travel services in place (i.e. buses, lift from friends/family) and where are they coming from (to give latest time possible for appointment if travelling from afar).

Cost: Low – Mid

ROI: Approximately €80 million a year is lost for the HSE for patients not attending clinics. Many reasons are cited for this but most of which I feel could be addressed through appropriate first point of contact when making appointments.


Problem 17: “I just don’t feel reassured…the next week, I again end up back in my GP’s office asking him what I should do. I am now referred to see someone else. He adds an anti nausea drug to help counteract the sickness I get. 

I somewhat now feel reassured that I have been listened to.”

Solution 17: If all of the above solutions were put in place I feel I would not only feel reassured, but I would feel less stressed, more trustworthy…and all over safer. I also feel that health professionals would too.

Cost Overall: Priceless

ROI: Never Ending


If you have done any of the above in your health service or have ideas as a patient, carer or health professional on what else could be done, I would love to learn about them.

Click here to fill in our contact form.

If you are a patient or carer and struggle with recording, storing or managing medications, symptoms or appointments then we have developed a simple to use health organiser called the MediStori, as funded by the HSE, and researched by NUIG. This may be a useful tool for you.

Click here for more information about the MediStori.


Definitions:

*ROI – Acronym: Return on Investment. Explanation: What the hospital/organisation/individual will gain/save in terms of money, time or resources by achieving the action.

**Nonadherence with medication is a complex and multidimensional health care problem. Adherence is defined as the extent to which patients are able to follow the recommendations for prescribed treatments. Taken from: www.ncbi.nlm.nih.gov/pmc/articles/PMC3711878/


Interesting articles you might like to read:

Waiting Rooms Apps that Engage Patients 

National Guidelines on Accessible Health and Social Care Services

The waiting room wait- from annoyance to opportunity

GP surgeries- what patients want

PROTOCOL THE MANAGEMENT OF OUTPATIENT SERVICES [HSE]

 

https://www.ronankavanagh.ie/blog/waiting-room-for-improvement/

 

Improving Process Turnaround Time in an Outpatient Clinic

 

Posted on

Are “Self Management” courses worth the paper they’re written on?

 

Maurice.

A 46 year old man stands at the kitchen counter in his house staring blankly at the two bags of medicines he has just collected from his pharmacy.

Maurice – his heart full of regret; his head racing with anxiety.

Feeling unhappy, scared about his future – and feeling, oh, so alone.

Suddenly he is stirred from his thoughts as his four children – two teenager boys and twin 10 year old girls – come bounding into the house with their mom in tow, after being collected from school.

He smiles at them, pushes the dreaded bags aside and asks them how their day was. Starts helping his wife with the dinner and goes about answering the twenty questions his inquisitive brood dive into.

His wife smiles over at him – she knows he is not himself. Knows he is tired. Tells him gently to go upstairs for a rest and she’ll take over.

Surrounded by people who love him – Maurice still feels all alone. Feels like he is a failure as a father, a husband, a man. Feels like a burden. Feels tainted with a label he can never remove.

Maurice has just been discharged from hospital for the fourth time that year, and on top of his diagnosis of rheumatoid arthritis, he now has been told that he also has depression and chronic fatigue.

He tries to take all of this in. Absorb what it means for his life – his family.

His future.

Having to give up his job a year earlier due to his debilitating condition he has found himself in a never ending cycle of pain; an inability to move due to severe stiffening of his joints; a constant tiredness from lack of sleep and an anxiety that never seems to leave him, even when he does sleep.

Maurice chooses to never share his concerns or feelings with his wife. He feels she has to make up for the job of two parents; sometimes feels like he is their fifth child. He hates being a burden her.

He also knows that she can sometimes get frustrated with him.

She tells him often that he should try joining a local support group, go to counselling or try new diets that could help alleviate his symptoms. She sits up for hours at night scrolling through thousands of online sites with the hope to find new treatments that might help him.

But Maurice is not interested.

He just doesn’t see the point.

He feels it is what is and nothing can change that. And as much as he doesn’t want to be depressed, he really doesn’t know how to change.

This evening in particular though his wife comes up to his room with a cup of tea, a glass of water and four of his many tablets. She sits at the side of his bed.

And she starts talking. About her, and the children.

She tells him that while having rheumatoid arthritis is one thing that there may never be a cure for, his thoughts are something that can be changed.

Tells him that she needs her old husband back; that their children need him.

Reminds him that after having her twins that she too had suffered depression and knew the only way to get through it was by talking to a counsellor and also opening up to her friends. She had wanted to get better for her husband, and her children. And most importantly, for herself.

She tries to motivate him into seeking help.

Maurice turns away from her on the bed and says that he’ll think about it.

Knowing that he won’t do anything about it, his wife gets upset and tells him she doesn’t know how much more she can handle. That she loves him but is finding it hard to manage it all on her own. That she wants her old husband back. The husband that cracked jokes which often made her “belly laugh”; the husband that would surprise her by finding old movies from their early days for their “date nights”. The husband that would give her a little spontaneous cheeky wink showing her he is still attracted to her.

They both know they haven’t been intimate in at least six months.

She sighs, gets up to leave; leaving a little leaflet on the bed beside him.

Asks him will he at least look at it.

As she leaves, unbeknownst to her, Maurice’s eyes fill up with tears.

He, again, feels like a failure.

He turns slowly around and picks up the leaflet.

He is surprised when he finds that he is actually interested in what this leaflet has to offer. It describes a local service which helps people better manage their health conditions – including depression. It doesn’t include counselling nor does it include faddy diets or potential “cures”. It seems like a very practical course.

Maurice thinks about it.

Logically he feels if he could take away some of the daily tasks from his wife such as managing his medications or reminding him of his appointments, he could take some of the burden off her.

If he could smile again, and mean it, maybe he could make her belly laugh again.

He picks up his phone and makes the call. Decides he will try this option. Decides he just doesn’t want to live like this anymore. He doesn’t want her to live like this anymore either.

He gets up out of bed, goes downstairs and tells his wife his plans. She is taken aback. He sees a small glimmer of hope in her. Inside he starts crying again. He really does hope that this will work.

On the first evening of the course Maurice is really nervous. He is there along with eight other people; six women and one other man. He feels like he doesn’t want to go through with it. But his wife has dropped him off and she is now at home.

He must just sit it out today, but tells himself immediately he won’t go back again.

The introductions begin. Everyone starts telling everyone else about their conditions. When it comes to his turn he also tells everyone that he has rheumatoid arthritis and finds it hard to sleep – but does not have the courage to talk about his depression.

He listens.

The facilitators had also introduced themselves. They are not health care professionals – but people who have also had various health issues. This surprises him.

They give an outline of the programme that will follow – they talk about how to make action plans, make decisions about their care, problem solve, manage medications, how to better communicate with health providers and how to recognise the symptom cycle – something that Maurice resonates with all too well.

On the tea break, Maurice gets talking to the other man on the course, Joe. He finds that Joe only lives a few kilometers away from his house – and Joe too had to give up his job as he has Multiple Sclerosis [MS].

Joe is also married and has grown up children – and after chatting for a few minutes, Joe admits he too finds he is a burden to his wife.

The course commences and Maurice learns that everyone in that little room are actually going through much of the same things as he. He had thought he was all alone but realised quickly that it didn’t matter what the condition was – the problems were all still the same for everyone.

After the first evening, Maurice says goodbye to Joe, and they exchange phone numbers – promising to contact one another that week.

As Maurice gets into the car, he leans over and squeezes his wife’s hand. She looks up and he knows that she is aware that he is saying thank you.

He feels for the first time in a long time, that there may be hope. He doesn’t feel so alone anymore. He decides to go back the next week.

The next five weeks fly by, and week after week, Maurice starts to understand that learning how to manage simple daily tasks can impact greatly on the way he thinks. The dark cloud starts lifting from his shoulders and he finds he is more motivated. He stays connected to Joe. They do their Action Plans together – going for a short walk, three days a week in the mornings when their wives are at work – they sometimes even change their plans when the weather is bad, or when they’re having a bad day and instead go to the local coffee shop or visit each others homes.

At the end of the course Maurice does not feel he is a “label” anymore. He understands that his condition is only one part of who he is, but it doesn’t define him as a person. He starts taking control of his medications and talks to his GP about reducing his anti-anxiety medications.

Decides that he might take up counselling after all.

His last Action Plan is to find an old movie and to have a “date night” with his wife. He gets into the car on the final evening of the course, looks over and winks at his wife. She smiles…from her eyes. She knows now her old Maurice is coming back.

So why has Maurice changed so much in such a short period of time – what are Self Management courses all about?

Well, I myself am a volunteer facilitator of Stanford University’s Chronic Disease Self Management Programme, which is just one of the many courses available – but one which I find extremely effective.

This course is designed to enhance regular treatment and disease-specific education such as cardiac rehabilitation, or diabetes instruction. In addition, many people have more than one chronic condition. The program is especially helpful for these people, as it gives them the skills to coordinate all the things needed to manage their health, as well as to help them keep active in their lives. The program does not conflict with existing programs or treatment.

The workshop is given two and a half hours, once a week, for six weeks, in community settings. People with different chronic health problems attend together. Workshops are facilitated by two trained leaders, one or both of whom are non-health professionals with chronic diseases themselves.

Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, 6) decision making, and, 7) how to evaluate new treatments.

But most importantly, it is the process in which the program is taught that makes it effective. Classes are highly participative, where mutual support and success build the participants’ confidence in their ability to manage their health and maintain active and fulfilling lives.*

What I love about this course, in particular, is the fact that it is not disease specific, but more focuses on the needs – it helps people remove the labels of their conditions and focus on themselves holistically, as people. There are, of course, specific disease programmes available also but I feel these are best done after the general workshop, as these can help with the technical issues arising from managing medications, treatments or services specifically for conditions such as Chrohns disease, diabetes or arthritis, for example.

Carers can also attend these workshops, which I find most important – often the carer can suffer depression, isolation and anxiety too.

I highly recommend that all patients and carers be given the opportunity to avail of these courses, as recommended by health professionals, at the point of care. They are based in local communities, and many people, just like Maurice and Joe, get to meet new people who understand the difficulties of having a long term condition. It can be life changing for so many.

It can be life changing for a whole family. A whole community even.

When patients participate in these courses it can also be extremely beneficial for health professionals. They can save health services time, money and resources and by reducing depression or breaking symptom cycles, for example, this can reduce copious amounts of unnecessary health care appointments and the prescribing of many unwanted medications.

I for one, as a patient and carer, love being a facilitator of this programme – I see so many people come in looking scared, anxious and dubious – and then leaving just six weeks later smiling, hopeful and aware. (It’s also an extra little bonus when many of the participants give us chocolates just to say thank you at the end of the course – though not so great for the waistline I might add!) 

There is something very special about helping others – you always learn something new yourself along the way that you can use in your daily life – and you make so many new friends too.

So to answer the question as the title of this blog suggested – Self Management courses are not about the paper they are written on – they are about the process in which they are delivered.

Self-Management is not about sickness – it is about holistic self care. It is about kindness. It is about community.

It is about life.


Resources:

There are many courses available in Ireland, such as the one I facilitate with. Please go online or ask your health professional for further resources. 


*Abstract [altered slightly] from https://patienteducation.stanford.edu/programs/cdsmp.html on the 27/08/2016

**Names of characters used are fictional – they just aim to help tell a story that many relate to.

Posted on

When patients and carers have no choice but to be innovative…

Patients and carers across the world are constantly coming up with new ideas in relation to the management of medications, achieving daily tasks with limited mobility, tracking symptoms and even finding ways to remember medical information. I myself even came up with the MediStori – a personal health organiser – while caring for my dad who was on 22 medications!

And this last week, for us, it was no different.

This time, however, it was not because of one of the many chronic conditions each of my daughters have – it was simply because my youngest daughter had slipped on a path, and upon going to the Emergency Department we were told she had ended up damaging the growth plate in her little ankle. Upon learning of same, 10 year old Mackensie was brought into the plaster room; a lovely nurse explained everything that was happening to her, and a cast was put on. She was given little crutches to walk on.

Sound serious? No, not at all – especially in the greater scheme of things.

Yet, over the next few days we found out the complications that come with the joys of having a cast and crutches combined – and along with the fact that she has a condition called hypermobility – poor Mackensie was finding it extremely difficult to do just simple day to day tasks.

All of my creative brain had to kick in to help her feel “normal”.

  • The first issue was her hands. After just 15 minutes of using the crutches her little hands became red, swollen and chaffed. All of the pressure was going down on her hands to carry her full body weight as she lifted her entire body for every step she took. 

File 27-08-2016 9 03 47 a.m.Solution 1: Get soft bandages and wrap them around the handles of the crutches.

Result 1: The bandages wore down in no time at all and chaffed her hands even more.

Solution 2: Cover the handles of the crutches with slipper socks.

Result 2: While they were soft, their bulkiness widened the span between her thumb and forefinger, and with having hypermobility, this caused more pain in the tendons and ligaments in her hands.

Solution 3: Ask my friends on Facebook!

Result 3: I was told to use the wrapping for Hurley sticks –  but this too caused chaffing on her hands – much like the bandage did.

Solution 4: Ask the pharmacist!

Result 4: Get pipe insulation – now, this at long last, worked a treat – and was cheap too!

  • The second issue was the stairs. An easy task for most but when you add a heavy cast and crutches to follow – not so easy!

Solution 1: Go up the stairs on her bottom.

Result 1: She found it difficult as she had to put more pressure on her hands while lifting her full body weight for each step.

Solution 2: Go up the stairs on her front.

Result 2: Both her legs would bang off the steps as she moved up each step, causing bruising.

Solution 3: Hop up the stairs on her good leg.

Result 3: This caused pain in her right hip – where her hypermobility affects her the most – and we were afraid she’d fall.

Solution 4: Have mammy or daddy lift her legs as she went up the stairs backwards.

Result 4: Even though this was the solution which worked the best, as it eased the pressure off her hands and hips. – Mammy and Daddy were both wrecks from trying to carry crutches while lift her legs at the same time – and her independence was taken away from her.

  • The third issue was bath time! Wrapping up the cast in plastic bags and sealing with cling film was the easy part, but we still could not submerge that leg…

File 27-08-2016 9 03 22 a.m.Solution 1: Bring a small stool (or stepladder as we did!) into the bath and have her sit in the bath with leg elevated.

Result 1: Her leg got tired from being lifted AND as she is of the age where she doesn’t like anyone to see her “in the nude” anymore so we also had to put her swimsuit on, meaning she didn’t get a proper wash.

Solution 2: Sit at the side of the bath with her head over the bath to wash her hair.

Result 2: Her neck got tired easily and again, she wasn’t getting washed properly.

Solution 3: Bring a chair into the shower, along with another chair outside of the shower to elevate leg.

Result 3: This worked best (even if half the bathroom got soaked!) But again, her independence was taken away from her

Now these were just the top three issues – we also had to find ways where she could open doors on her own; brush her teeth while balancing on crutches and the joys of having to keep the crutches standing together and not fall over when she sat at the dinner table. We had to find ways where she could carry things in her hands while using the crutches – and with school starting next week I’m sure we’ll find more fun things to get innovative with!

So, I suppose my question is – why are devices, like crutches, not built with the patients whole needs in mind?

Yes, they serve the purpose of keeping the weight off the injured leg, but they do not help with other issues that are part of daily life – and they put weight and strain on the rest of the body. Additionally she needed more pain relief for her tired hips and creams for her sore hands.

Also she is lucky that she is a child – and has us, her parents, to care for her – what happens with the poor adults who are living on their own?

Researching online showed me there are such innovations available across the seas – but they come with a high cost – and with her more than likely going to be taken off the crutches in a few weeks time – this is not something I am going to invest in (though I am still really tempted!)

I really feel our health services should invest in these solutions – not us, as patients.

Solutions:

  • A helpful booklet could be given to patients with ideas on how to do daily tasks – not just outlining what NOT to do
  • “Insulation” type covers given at the point of care for the handles would help ease the pain on hands
  • Giving out a waterproof cover for the cast would prevent patients having to come up with ideas all on their own
  • Having a little bag which attaches to the crutches could help people carry items with them
  • A simple little elastic could “stick” the crutches together temporarily so they don’t fall over, or fall apart

Or even better health services could research new crutches which aide in even distribution of weight, and then invest in same!

Yes, the pink cast makes having a cast more fun but this is only a short lived experience – the real experience is just trying to get on with it!

So have you ever had to be innovative while being a patient or carer – or even a health care professional?

If so, I would love to hear your stories…

 

 

 

 

 

 

Posted on

Exploiting consumers experience rather than creating it.

Yet again another Christmas shop opens. A video posted shows a large retailer in Ireland selling its Christmas decorations – in August.

Yet again, I sigh.

I sigh not because I have yet to pay upcoming fees for my children going back to school (and I don’t want to be hounded about Santa just yet) nor do I sigh because I am still in my positive summer mood (and don’t want to think about hats and scarves just yet!)

I sigh because I think it is just bad business planning.

Now before people think I am the ominous Grinch – please let me explain…my absolute favourite time of the year is Christmas. It is a huge part of our family tradition. Truthfully, the presents, the decorations and the continual flow of food are part of this, but they are only one small part of it:

The real reason I love Christmas is because of the anticipation, the excitement and the entire build up to it.

I know what Christmas means to me.

I know what it means to others. And after reading the comments posted after the video of this retail store was posted, I captured their thoughts too…

Meaning…

“It’s ALL about the money…The true meaning of Christmas is being RUINED by retail fat cats.”

“For us it would be after Thanksgiving, but I’m with you. One holiday at a time. Christmas is way too special to be overly commercialized.”

“Christmas should not be in the shops until 1st December. Children don’t understand the long wait. Appreciate and enjoy your life from now until December. Don’t wish your life away. Crazy stuff.”  

“It’s August, talk about ruining Christmas. Absolute disgrace that shops are displaying Christmas stock and the kids haven’t even gone back to school not to mention we haven’t had Halloween yet.”

 Fears…

“Too, too early, it’s only going to worry people and put them under pressure.”

Awareness…

“Inherent capitalism, Turning a week long holiday into a shopping frenzy for shallow and mindless zombies. Witness the result of humanity’s greed. We no longer live in the here and now. What a bunch of k******ds.”                             

Brands Broken…

“OH MY GOD, only talking about this yesterday …. “Wouldn’t have happened in Switzers back in my day I tells ya” 

Loss of Consumers…

“BT you are out of your mind!!! Insane and shocking! You are definitely losing some customer over this! Ridiculous!”

“Totally off putting, ridiculous to see this in August. I shall be avoiding the shop so, thanks for the heads up!”

Customer even jokingly see the trends…

“I must say I’m a bit disappointed. I was hoping to see the Easter Eggs 2019 😂”

You see, there really is such thing as bad advertising. Especially when consumers outwardly say that they are leaving.

I too am an aware consumer.

I am also an experienced business person. I understand what customer service is – and it has everything to do with the products and services I supply, plus the feelings they have when dealing with my and my company – and equally my understanding of my customers needs.

For me I think about my market both holistically and statistically – locally, and collectively as a nation. Learning about what my targeted customers tend to do in their daily life; the various levels of disposable income they may have; the factors impacting on decision making; the things in life they love – and hate; their values, beliefs – and most importantly their culture.

Culture is not just about where you are from or what religion you practice. It is also about how you were brought up.

It is not that hard to whittle this down, even though it mind sound so. It is all about listening, reading between the lines and responding. Profiling your ideal customer. So I thought I might ask you , my readers, to see if you could profile me and think of a little marketing strategy to make me want to buy in your shop this Christmas, based on my own little story…

“Every year I love the experience of watching my children counting down the last days for Santa to come. I get excited thinking about all my family getting together again. I love the searching online for the date when the Christmas grotto will open at the pet farm we have visited since my children were babies. I enjoy the organising of our annual family day trip in to Dublin city to see the window displays – a tradition given to me by my mom when she brought us in to see Cleary’s and Switzer’s windows as young children. I love watching my children’s faces on our annual horse and carriage ride around the city looking at all the lights, while all wrapped up in warm, woolly blankets. I love being in my element browsing around the shops to pick gifts, clothes and purchase our newest special ornament to add to our Christmas collection, which we then date underneath upon arriving home –  and proceed to decorate our tree with together, always on the 8th of December.

I feel warm inside thinking about my mum and brother coming to stay with us for the holidays. Knowing every Christmas Eve, myself my mum and my girls walk up to our local village in the dusk, leaving my husband and brother at home wrapping up their last minute presents for me and my mum and putting them under the tree (they still think we don’t know about it!). I love the feeling I get when we reach our village on this Eve – reveling in the fact that all the shops are closed; soaking in the peace; knowing that there is no more that can be bought or got, and that I can just enjoy the Christmas from now on. Walking by these shop windows and visiting our church; which is lit softly and so, so quiet; awaiting the midnight ceremonies. After saying our prayers, remembering those who we have lost and lighting a candle at the crib, we then wander into our local pub to get hot chocolates and muffins at the fire; afterwards heading home just in time to see Santa leave the North Pole on the Six O’Clock news. My girls allowed to open only one Christmas present that evening – always pajamas from my Mom. And finally settling in for the evening with neighbours and friends calling – waiting for my girls to go to sleep before Santa arrives.

Waking up the next morning blurry eyed and heart racing as my girls wake the whole house waiting for Nana and Uncle Stephen to wake up. Grabbing my phone to capture the moments of surprise. Oohing and aahing at all the presents. My husband putting on cooker for breakfast and the kettle for tea. My brother finding batteries and screwdrivers for toys.

My mum knowingly looking at me as we think how much we miss my dad on these days especially. Getting interrupted by more excitement as new presents are found under the tree. Followed quickly by grumbles as I say we have to get ready for mass. I take a deep breath – delighted that Santa had brought the girls what they wanted and now looking forward to us all going to my mum-in-laws for her amazing Christmas dinner along with all my extended family. I now know Christmas has arrived. I can now relax.”

To convert my story into sales is not that hard to do. Many retailers could pick up on my ideals, family values, imaginative and romantic ideals to create a simple little special event which could make me feel like I want to go there. By default, I know I would end up purchasing goods there, simply because it made me feel excited.

I would also probably make it a new Christmas tradition, if it were special enough.

My little story as told above are our little family traditions, amongst many. They make me who I am – it is part of my culture.

We also have many other traditions that we love too at different times of the year – including the Easter Bunny hunt; my children’s “back to school parties” and dressing up the house – and ourselves – for Hallowe’en. Each of these as important as the next.

So who gives retailers the right to overshadow these in favour of Christmas?

I often wonder do large retailers have any sense of what tradition means to people?

Or know how important it is to not destroy the exciting rush people get leading up to certain events?

That it can benefit them – benefit their businesses. The anticipation and excitement in the few weeks building up to the Big Day is usually so intense simply because of the short time that people have to get their shopping in, post Christmas cards or decorate their homes. All while doing so in really cold weather and wrapped up in hats and scarves. A time of the year where most people wouldn’t venture out to do shopping for hours – but do – because they want to capture the Christmas spirit. And even though people may complain about the rush – it does all add up to the overall positive experience – retailers listen up – setting up Christmas shops with decorations is not a priority, it’s a nice to have, for those niche few who have time to window shop! And they would still happily wait until November to purchase same – and probably more eagerly too. Early innovators and adopters will drive the market, and it will naturally reach it’s point on the curve on Christmas Eve. Timing is everything.

Summer is not associated with Christmas. Cold weather is very much part of what it is all about. Budweiser, Coca-Cola and Guiness ads are an example of this showing in their campaigns. And when we see these ads, we do feel Christmas has really begun.

We appreciate the warmth of shops, restaurants and often  stay that little bit longer to browse before we go out again.

But when something is disassociated with what it is culturally supposed to be, it can change our perceptions, thus changing the experience. The same as when something is long drawn out it can take away from the value offering. Have you ever been to an amazing conference with excellent speakers, but the day goes on too long and you leave feeling drained, not inspired, forgetting the good you had witnessed? I feel we appreciate the time that follows a short rush of adrenaline – much like after winning a race of sorts. We relax way more. We often feel proud of our achievements.

I love having a date to look forward to – for me it creates anticipation and excitement – and a crazy element of sheer panic! Even a wedding day can do this – though booked a year in advance – many things are still often left on the long finger, and it is then people often buy things they just don’t need – and quite often even can’t even afford. But they do it because they want to make sure everything is just right.

Even the most organised people in the world will do the same thing.

Is this not good for enterprises?

From my own perspective I feel that many people spend less in “window shopping” mode, and it makes me think why do businesses aim for small purchases and waste their valuable staffs time (and company finances) all year round with Christmas shops for example, when they could cleverly capitalise (if I am to use the word!) on an anticipation and excitement which could potentially bring people from all corners of the country to be there. And repeat the same year after year.

Why not focus on what the market need, instead of presuming what they want? People emotionally purchase non-essential products.

I wonder do many enterprises understand the benefits of creating an outstanding customer cultural experience where their consumers could potentially make their store part of their family Christmas tradition, like I do with our little pet farm in Athlone? I question if retailers survey their communities (not just their current consumers) to capture what potential new markets really want?

It seems to me that the very thing that society wants (and needs – i.e. looking forward to good times) is dying out because of constant reminders nearly all year round that “such and such” is only around the corner – and by doing so, overshadows or ignores important times such as Hallowe’en – all of which could be capitalised on more by retailers if they had enough savvy.

So, as I said earlier, a video was posted via a national Irish newspaper on Facebook showing a large retailer opening it’s Christmas shop in August. I decided to see if it was just me who was feeling so negative about it. I went through the comments and came up with some statistics based on my findings:

510 comments were made in total (at my time of reading it).

248 people expressed dislike at the store opening it’s Christmas shop in August.

130 people expressed positivity at the store opening its store in August.

132 other comments were variable and included the tagging of people, for example.  

Many people said they loved Christmas, and the shop looked nice but still said it was too early. 

From the negative undertones captured many were concerned that the “spirit of Christmas was being destroyed”.

So no, it wasn’t just me. 

“As slow as Christmas” is a saying that I sadly think will itself slowly die out, if it to be an all year event.

I feel consumerism is pushing the boundaries of time. Is this why we feel time is going so fast? Is it because we are constantly being made aware of the future by tactics like this, with no focus on what is happening right now?

Call to Action:

I ask our commercial entities to stop changing what works and start focusing on it; incorporating it into your strategies. I think businesses should pace themselves and take recount. Maybe think of a kick-ass marketing strategy that will bring more new customers into YOUR shop during the Christmas period – use your money, your staff and time wisely. Capitalise, if you must, on the EXPERIENCE that Christmas and other events are all about – do not choose one over the other as your priority; nor just think about the materials that are associated with these events. I advise retailers to read Fred Lee’s slide share on the importance of focusing on experience over outputs, and you will get even better outputs than you ever expected.

I know that I for one, have now made a decision to not visit the store who set up this Christmas shop anymore – which is particularly sad for me as this store was previously known as Switzer’s and was one my mom brought me to at Christmas time as a young child.

I was this stores market.

And sadly, because they are ruining what I see as a huge part of my experience, they have just lost me, and many more, through their pushy, materialistic marketing campaigns.