International Nurses Day (IND) is an international day celebrated around the world on 12 May of each year, to mark the contributions nurses make to society.
Nurses have been a big part of my life as a patient with a chronic condition. They have often been my saviours and the reason I have always been able to be positive in time of darkness. So today I thought I would share a story of a nurse who I cherished and would like to take this opportunity to share the difference she made to my experience as a patient.
This nurse, who we will go Emily for the sake of this story, was someone who I had seen rise through the ranks from a training nurse to a fully qualified nurse during my time as a patient at Lewisham Hospital between the age of 5 - 12. And I always remembered her for her caring smile, understanding tone of voice and her personable manner. Emily really made an impression on me when she was training and she always was more than happy to come and sit with me and keep me company while I was in the midst of my 6 - 8 months stints in hospital in traction, which was becoming rather commonplace for me around that age.
Being in hospital is never easy, especially as a patient. However, it becomes increasingly difficult to endure as you become isolated from your friends, peers and anyone else but doctors and nurses. On admissions, after the pain was under control, I became my long time isolation until I was fit enough to go home. Often going into my shell for days on end and just being more reclusive then normal. However, Emily was able to change that, she always was up for getting me engaged, talking about the events of the day and topical things which was going on in the world. Being trapped in hospital in those days often meant disengagement with the outside world, but Emily helped change that for me. Every time she was on duty I was the happiest patient because I knew I was going to have a smile on my face throughout the day. I would be appreciated, talked to as a real human being and not a patient.
The moment that really sticks with me to this day was an admission I had shortly after my 12th birthday. I had just been admitted to the Children's Ward at Lewisham Hospital and I was still in the intensive monitoring part of the ward while they attempted to get my pain under control. On that night, Emily happened to be on the ward after having done another shift elsewhere. When she saw my name on the board of patients she came over instantly and tried to calm me down and sat with me and read me stories from the paper and short novels on the ward until I fell asleep.
This is one extra mile that one particular, but very special nurse took that I will never forget. What Emily did that night was what I think all nurses are very good at, at caring and looking after their patients as real people with real lives.
So, with that I would like to thank you Emily and all nurses, past, present and future for all you have done, are doing and will do. You are the spirit that keeps the hospital going but also helps keep the spirit in us, the patients, going. Thank you!
I always knew adult services was going to be different. I expected that adult services was not going to be as personalised, patient focused and individualistic as children's services. However, I was always positive that adult services would make me feel comfortable. This is true, my new adult consultant was lovely and she was hand picked my paediatrician as someone who he recognised as being someone who would be able to give the same level of care and attention he did.
Everything is absolutely fine with my new consultant, I would have 6 monthly check ups with her. She is friendly, talkative and showed interest in my academic career, lifestyle as well as my health. This made me feel very comfortable with here and helped build a bond in which I could talk to her about any issues I was facing. She always left enough time for appointments so I felt there was time to discuss any outstanding issues as well as new issues.
However, what I forgot about adult services, as with any service is that when going for appointments, you stand the chance of seeing your main consultant or someone else from their team. That was what happened to me at my most recent appointment. Unfortunately, I had to reschedule my most recent appointment due to my University exams. Therefore, the new date I got fell on a day in which my consultant doesn't typically do clinics. As such, I was allocated to one of her registrars from her team. He was perfectly lovely, he was very professional and treated me like an adult. So no complaints on that front.
However, what came across immediately from the moment I was invited into the consultation room was his tone and attitude. He spoke very quickly, and almost left no time for me to interrupt or cut in. I felt as though he was rushing through his patients, which I am sure wasn't really the case. This was just the impression that I got. I felt like I was taking up his time if I wanted to bring up something new, or if I wanted to discuss something more in detail, which is definitely how a patient should NOT be made to feel. I feel that, it may have been his naturally way of speaking but that can be rather off putting for some patients. Definitely was for me. The tone a Doctor sets when they start a conversation with you sets how the consultation goes. If the Doctor is open, friendly and the conversation flows naturally then you are more likely as a patient to be open and discuss matters. However, if a Doctors tone is more quick and fast flowing and seems to not give you as much chance to speak as you would like, you rarely challenge it and you sit quietly and listen and answer when asked. Much like in a classroom. This is not what a consultation should be like.
I am not saying that he was wrong in that particular consultation, I would merely suggest that when speaking to patients Doctors should speak slowly and try to think how the patient is feeling. Especially the younger patients, having moved to adult services relatively recently, I am not used to having to ever ask a Doctor to slow down or feeling like I needed to interrupt in order to get my point across but in this particular consultation I felt like I needed to. While I may have the courage to do that, some other patients may not and that is not good! Obviously on that day, I had a bad experience. However, it has made me think? What if there are more Doctors who are like that, who unintentionally make their patients feel uncomfortable and make it more difficult for their patients to speak up? In some cases, patients rely more on their consultants than on their GPs, so if you can't talk to your consultant (in a situation like this) than who can you speak to?
As I lay here, in pain and in my thoughts, I wonder, what makes me who I am?
Personality, lifestyles, and ambitions are traditionally attributed towards, amongst other things, to genetics, environment, and life experiences. However, what if my life experiences are my environment is my genetics. What if they are all the same and are all affected by one overarching thing; my medical condition.
How would I be different if I was born without a genetic condition? How would my life be different? Would I still have the same drive, same passion, same enthusiasm for life that I do now? These are the questions, which on nights I cannot sleep due to a variety of reasons, which weigh heavily on my mind.
I have contemplated a past and present if my life was different. I believe that without my condition my life course would have taken a different path. Up until university, my life has always been one that has been sheltered and different, be it through personal circumstances or issues with societal infrastructure. I was an individual who had dual characteristics, one who was rather shy and somewhat reclusive spending my breaks and lunches indoors as I was always terrified of the outside world. The world for me held dangers, which I could not cope with. I was always accompanied by an adult in whatever activity I did, and that made me feel rather sheltered. As such, I always got on better it seemed with adults. I bonded with adults more than I did with my peers. Therefore, to them I seemed mature, confident, and outspoken. However, on the inside I was a meek boy who was putting on an act for the world. A face of bravery to a world, which I felt, I was being hard done by.
Up until I reached sixth form, friendships for me were something of a passing fancy. I was never in school for long enough to make and sustain friendships, and before the emerging popularity of Facebook, staying in contact with people was a lot more difficult. I was like a ghost, fleeting in and out without leaving a mark or trail. Friendships were made for me of people I met through classes rather than through being a sociable individual. I was never the kid that was invited to parties, and I was never the one who was popular. When I entered secondary school, the bullying I experienced was silent but everywhere. My peers did not understand what my condition was and therefore did not understand why I was treated differently. I got teased, my wheelchair got kicked, I was seen more as a play thing than as an individual, arguments got started in class because I was allowed to leave lessons a bit earlier and come to class a bit later in order to avoid the rush of two thousand students in the corridors. There seemed to be an air of animosity in my peer group, while it was only a small majority that made me feel this, it was enough. I was an outsider. That was something I accepted from a young age.
I was different. I spent a lot of time in hospital; my environment was in the world of the adults. I never felt like I belonged in the world of my peers. When you are diagnosed with a medical condition, especially a physical condition like mine, it makes you grow up. You have to deal with the problems it brings with it and you need to realise the implications and limitations it brings with it. Even though I was diagnosed with my condition when I was two years old, I do not think I really fully understood the full implications of my condition until I was sixteen. I would be lying to myself if I said that all this dawning on me did not hurt.
When I was younger, I would be in hospital for periods between six months to a year, with no visitors beyond my parents, and my family I would feel hurt. I often questioned why must my life be like this? I had dark times, where I barely spoke and all I did was eat and sleep. I became in life what I was outside, a recluse. The thought of going back to school frightened me because I was being thrown back into an environment where I felt I did not belong. In the time, I spent in hospital or at home recovering, I would happily spend that time doing my schoolwork and getting good grades and marks. I felt school was a place where there was unnecessary danger. Apart from getting an education and grades, I felt there was nothing for me at school. I got pleasure from working and from being a good student. It made my life feel worthwhile. It made me feel as though my life had a purpose.
When you spend that much time with your thoughts, and you get a chance to do research on other people with your condition you get to see how different peoples lives are with my condition. Some barely make it past childbirth; some live a life but are not able to live a full life due to shorter life expectancies. I wanted that not be my case, my story. There was only one thing I could do and do well and that was study. Therefore, I devoted my life to achievements and grades because that to me at the time showed success. How wrong I was! However, at the time that is all I cared about. Do whatever it took to get the grades, because from that I got my worth. I was able to show I was able to do something with my life and not be 'disabled'. Having thought more about this period of my life, I realise how self - centred I was. How I cared only about doing what was best for me or what I thought was best for me. Up until I was 16/17 I kept to that reclusive state, I stayed myself to myself because I felt that was the only way to succeed and to stay safe.
My life became this prison into which I patrolled, never stepping outside the gates. Never daring to overstep the boundaries. I never challenged myself in other way but academically. I was always the good boy, never being one who was told off, never the one who forgot his books or equipment. The boy who had everything and was ready to face any academic challenge. I was the one who was able to fend off sanctions and detentions for 7 years, until one fateful day on the last day of year 11. The most excitement my life had at that time was the possibility of switching schools to go to a different sixth form college in order to help me excel further academically. I was doing what was making me happy, because with my condition I thought that was the only thing I could do in my life in a way that was safe for me to achieve happiness.
So what if my life wasn't like this? What if my life wasn't encased in a self constructed prison? What if I was an able-bodied person? Would I be as academically successful? Would I have had the resilience and drive to keep pushing to get the best grades, to get into the best schools and to get into the best university? Maybe, maybe not.
If I was an able-bodied person, would I have been happier as a teen? Would I have had more friends in my peer group? Would I have had exposure to a different environment that changed the person I am now? Would I have begun smoking at an earlier age? Drinking at an earlier age? Would I have rebelled against the system like some of my peers did, against the futility of the grade system and that value is based on grades and how well you do in school and university? Maybe, Maybe not.
Whatever may have happened, whatever ifs come into my head, what I know for certain is what happened more recently, what happened in the last 4 years of my life.
I see sixth form as a real turning point for me. As I mentioned before, I did not realise the full implications of my condition until I was 16, which was the around about the time I transitioned in more ways than one. It was the time when I started to realise my happiness did not come with just grades, my life did not revolve around the grades, it started to dawn on me while grades were important the people around me were equally if not more important in my life. My friends, who had been 'passing fancies' in my earlier teens became people I could come to depend on and they would come to depend on me. I was able to, with the help of some adults in my life, to start exploring the things, which I had missed out on when I was younger. I was able to go to parties, I was becoming more sociable, I was becoming the things I never thought I could be because of my condition. 16 was the year I started to become more about Thines rather than about the Osteogenesis Imperfecta, which had ruled my life until then. My carers while still present, were able to to take a step back allowing me to be who I wanted to be without being who they thought I was.
16 was when I started to enjoy life and I have not stopped since. I have had the chance to take part in things and help in things that I never thought were possible. I am able to partake in things I thought were impossible for someone like me. The barriers that used to be in place were slowly falling away because I wanted them to. I wanted to make certain lifestyle changes, I wanted to experiment, and it was good. I cannot say I have never made mistakes since that point; of course, I have, but relish them. I relish the opportunity to do things and make mistakes, I bounce at the chance to do things, which I thought were not something I could do or should do simply because I thought it might be a hindrance to my health. I was keeping myself back and it was not something I wanted to do any more. I grasped every opportunity that I got because I realised there was no harm in trying. I had nothing to lose and everything to gain. When I said earlier grades = success = happiness, I am wrong what I do now is happiness and I have been doing for the past four years is happiness. I am the most happy now when I am with my friends, friends who care, friends who matter to me and friends above all are the best of me. I used to think I did not belong in a place with my peers, but I could not be more wrong. Without them and their constant encouragement I would be no one, it took me a long time to realise that but what a time to realise it?
A fantastic video made by a group of young people talking about and giving advice to researchers on how to achieve active, positive and non - tokenistic involvement from children and young people. Some of the key points highlighted are:
The first steps of getting rid of the stigma around mental health and mental illness is to have all the facts and to be given all the facts. I think the best ways of getting these messages across would be through PHSCE lessons, and through the messages being delivered by people who have had personal experience to talk from. As often, that is the most powerful and the ones where the message gets put across most strongly. Schools should do more to encourage and promote the learning of facts of mental health and to talk about the issue more openly and to dispel the misconceptions around mental illness.
“To practice any art, no matter how well or badly, is a way to make your soul grow. So do it.” Kurt Vonnegut
Really inspirational video, and a way of maintaining your mental wellbeing and health.
Must watch! Makes you think twice about Mental health
Matt Windle is an inspirational young man, with touching and relevant poetry. In 2007/08 he was Birmingham’s Young Poet Laureate. This poem talks about mental health and about the stigma that is built around mental illness. 'Mental isn't crazy it's to do with the mind'. He highlights how prevalent mental illness can be, it's happening to 1 in 4. Therefore, making even more imperative we get rid of the stigma and silence that has been built around Mental illness and we talk about it in school and on other platforms. Make sure people who need help aren't scared to go seek the help they need for fear of ridicule or exclusion. If peoples mental health is being effected then we need to ensure we talk about it and don't keep it hush. School is the perfect place to start talking about mental health and make it a norm. We spend so much time in school, there is no better place to start talking about and ask someone how they feel. Please share this video and make everyone think twice about mental health.
This newly created GP Access fund could be exactly what we have been calling for as young people for a while now. These new reforms would see "patients at 1,147 GP practices across England will be able to see their family doctor outside normal working hours, including late-night and weekend appointments or use one of the modern consultation
tools for convenience." The modern consultation tools that would be used "Skype, email and phone".
In regards to GP services this is one of the major solutions we have been proffering, in the first instance, having 24 hour surgeries and ability to contact our GP would mean that we as young people are more likely to use our GPs as our first port of call if there was something wrong. Therefore, putting less strain on A&E services. Also the use of modern consultative tools is something which should have implemented earlier but we are glad to see the push in the right direction. In utilising modern tools, GPs are more likely to get interaction from their patients and bonds and trust being built being these two key stakeholders.
Personally, I have never had good relations with my GP. I would always opt for going to A&E than to go see my GP. My parents see our GP more than I do. This is because in the first instance, it is the most difficult thing in order to get an appointment with my GP. While I am able to see a GP at my surgery, I am unable to see MY GP. Therefore, the continuity of care was never there. This meant that every time I went to see a GP, I had to reiterate what was the issue and matter with me and explain the nuances with my condition. However, this new reform could change that, as with the increased time the surgeries would be open for, it would give more appointment slots with our GPs therefore, a chance for continuity of care and a chance to even get an appointment would increase. Secondly, I have experienced times whereby my GP, when I do get an appointment with them, would rather send me to A&E than to treat me themselves. As they know I have another medical condition in which they are unfamiliar with, they would rather not prescribe or do something, in fear that it may interfere with my other treatment. On the positive side, if I was able to go see MY GP more, than it would allow a relationship to build and provide a chance for them to get to know my condition more and therefore, giving them a chance to build up confidence in treating me. This would be further enhanced through the multitude of ways being proposed in order to get in contact with your GP. This would mean that you can still be in touch and 'see' your GP without actually going to their surgery.
I think this is a really exciting development and I personally will be following this, to see how the government follows through with this, as I can see this having a lot of positive impacts.
"In this short film Jane talks about her mental health issues at school and the difficulties of getting help from adults around her. Dr Raph Kelvin talks about how letting mental health problems in youth go unnoticed can lead to a multitude of issues in adult life and how MindEd can help adults to intervene early, getting children and young people the support they need."
"MindEd provides practical e-learning sessions when and wherever they’re needed, quickly building knowledge and confidence to identify an issue, act swiftly and improve outcomes for children and young people."
This is a collection of articles, news, videos which I have come across and thought it is worth sharing and recording for future reference. The topics of these posts will vary and there really is no theme, apart from the fact I find them to be thought provoking.