Patient Empowerment from the perspective of a young person – Extended Addition

11265601_959009910797613_5347489504912821994_o16, an age to be young and find your first breath of freedom is the age that I was diagnosed with diabetes. But, it’s not all bad. Initially the fear of having an illness that would expand a lifetime catapulted me into a new world where hospital visits became the norm, blood tests became routine everyday activities and over protective parents began to emerge. It’s not the illness that is tiring. It’s the constant questions about your health which seem to have emulated into a public occurrence… from once being a something that was a rather private and a closed aspect of life. Chronic illnesses are invisible but their management is less so.

My diabetes team was always very supportive but that didn’t make it easy for me to confess my problems with my illness or indeed request better treatment. It was just the odd injection that bothered me at first, with thoughts occurring about how for 16 years I didn’t need this but overnight I did. Mostly though, it was the apparent visible nature of administering injections in public for the fear of being seen and stereotyped as a druggie. It was just a bizarre experience to go from being scared of needles to having to accept them and conquer your fears. The doctors and nurses always spoke to my parents but they did also take time to talk to me. Supporting my parents and I to understand how this would change the future forever really.

Although I had the support I needed it was extremely difficult to become an empowered patient. When institutions such as the NHS exist, naturally we as humans become less inclined to ask those important questions about the best treatment options available simply because of the cost incurred by the government. As a very aware young person, a health activist of many years, being empowered and asking the all-important question about seeking a better treatment option for my own health, felt like I was asking for a Gucci handbag from an H&M store. When you’re a patient, you don’t just take control of your own health, you sorta begin to factor in other patients lives. Before asking about a better option for yourself you begin to think “If I ask for more help or a better option for treatment am I depriving someone else of theirs” or my personal favourite, “there is someone out there who is far worse off and needs this more than me”.

Regardless of all these thoughts, the fact still remains that you are a patient and you deserve a slightly more personalised service. You do deserve the right to feel like you can take control of your new health problem and learn to adapt, live and develop as a normal individual. You deserve not to be worried about your future because you can’t seem to manage this ‘minuscule’ problem in societies eyes that you know in ‘magnanimous’. After almost a year and a half of this internal struggle to request a better treatment, I made the stand. It was coming close to that awful transition period between paediatrics and adult healthcare.

Restless, nervous and frankly nerve-wracking, this was more intense than having to deliver a speech to a room of adults. My confidence was diminishing every time the clock tick-tocked in the waiting room. My name was called and I began to walk with shaky legs towards the consultation room but my mother voice resonated within “your walk should never show your struggle, always walk with confidence”. I knocked and was greeted by my lovely team but a young patient in an adult’s world asking for help is like trying to find an ant on the ground from the sky. Despite meeting the criteria and having a clinical need for the newer treatment option (in my case an insulin pump), you have to be ready to battle every question you are asked about why you need it. It’s not a simple conversation between a doctor and patient, it can turn into a court room where you are the innocent being proved guilty.

I made a lethal mistake. I should have raised my concerns earlier because as a teen in paediatric care it is much easier to obtain the help and support you need to change treatment options but the moment you become an adult you are pretty much downgraded. In Britain, there is a variety of ways to describe the transition, the best and most commonly known is that it’s “like moving from a Rolls-Royce to a Taxi service”. My new doctor was much less supportive whilst my old doctor was more helpful. Being transitioned right now feels like the wrong time because you’re in this state of limbo where you are an adult but you’re not taken 100% seriously. So amidst the difficulties of receiving contradictory responses from my two doctors who deal with completely different ages, I felt helpless. But that is nature of the healthcare system in most countries.

You will at some point feel powerless and unable to obtain the healthcare you need but you need to know that it’s normally just the beginning of your journey. Although there was resistance in my case from one doctor, I did not accept defeat. I fought to secure recognition of my changing needs and that is what every patient must do. In order to obtain what you need, you will need to think like a politician or a lawyer; you will need an answer for every question. Be persistent. Be determined. Be a nuisance because only perseverance will command success.

Disclosure… do you have the choice to hide your patient status in employment?

healthEvery diagnosis has a  exhausting list of self-care issues associated with it. There will be numerous hospital visits, several treatment options and the same doctor with an increasingly worrying way of describing your newly acquired illness. Through it all, amidst the storm of thoughts that appear to cloud your vision… there is one that stays with you for life. “To disclose or not to disclose” your illness to friends, families and employers. Luckily, we have degree of control over family and friends knowing but Employment is still an issue in the horizon.

Although there are now several laws within mostly globalised societies, protecting the interests of patients it is still a grey area to many. You can hide it from colleagues to an extent but it is an integral part of disclosure required by Human Resources. Many countries under domestic laws require patients to reveal their illnesses for health and safety purposes. The conflict arises here. Different illnesses will be received in a variety of ways by an employer which can have positive, negative and sometimes detrimental effects on relationships between colleague due to the misconceptions that exist in society.

In 2013, I met several young patients at an international Seminar, there was a young patient (changed name) David, who had been diagnosed with HIV at birth. With roots stemming from an Eastern European country where the European Discrimination Law is loosely upheld in employment; he found himself jobless and in a dire situation of regret – for the gift of life. Previously, he had disclosed his illness to employers but found his position revoked after a couple months, this seemed to be the case for some young patients living in countries where social stigma surrounding illness is still high.

Needless to say, for all of us individuals even without illness, being unemployed is a notoriously dreadful experience. But add the cost of healthcare and treatments onto the daily essentials of food and sanitation, debt is accumulated almost immediately.

This issue is also prevalent in industrialised societies whereby having an illness can sometimes be a determining factor in obtaining a job. Some societies such as Britain and Germany, demand a quota for employee’s who are disabled within companies however, many companies do not always recognise that this includes patients. Its not about employers being unfair in fact the main problem is companies being ill-informed about illnesses and their effect on productivity. We need to tackle social stigma surrounding complex illnesses by working together, patients can have the same (if not better) potential as other employee’s.

So how can we do it… Lets meet again, here on Friday 20th June to work out how a patient can be empowered and be an incredibly valuable asset to your company. Fridays Blog will discuss this in depth and I look forward to our twitter chat afterwards.

Disclaimer- none of the aforementioned is reflective of the views held by the European Patients Forum and is created by the author using information collated from informal discussions and as such should be taken as an expression of viewpoint… not fact.

Head Girl – Speech Transcript

Perseverance commands success and I am someone who perseveres

A video of the speech and presentation is available on the school shared drive and a link will be sent via email to all teachers 🙂

Well, hello everyone…. My name is Aneela, I’m sure that we have communicated at some point this year even if it was for some directional support. I would like to begin by saying that all of the students standing here today for your vote really do deserve it and that all of them would be well –s suited to the role. So with further ado, I shall explain what I would do, please bear in mind that these are not all my idea’s these are idea’s that I have been hearing form the people around me all year. They are your ideas just redefined by me.

I think that change needs to be sustainable and efficient so that the communication between the entire school improves. I would like to propose a new system for student voice to create better communication and better youth leadership opportunities within the school environment.

Explain the slide – Student voice structure image slide below


Fundraising one national organisation and one local organisation – every house chooses

Lower school integration – cooking challenges, zumba style classes organised by 6th form, roller disco’s, themed lunchtime and dinner time events e.g, mix sessions, detective treasure hunts

Bank of opportunities national and international voluntary opportunities publicised on screens and fortnightly newsletter so that students can gain a competitive edge on other students applying for jobs and university places.

6th form screen reporting – events – social media feed – news from 6th form and around the school work in collaboration with ridgeway newsletter currently produced in school.

Work Experience Bank – A list of contacts of individuals from organisations who are able to offer work experience and work on the aims and outcomes that a student outlines so that work experience is meaningful. I.E not about making teas!

Careers beyond university – the work place explained, board opportunities, breaking into managerial roles, career development what it’s all about and what it includes

Student Voice UK – training opportunities, conference on 7th july – regardless of who you choose I hope that they are able to attend this fantastic event

This slide shows some of the representation that I have outside school with the age that I was formally recruited in brackets.

Just like August waters tell hazel grace that the cigarette that rests between his lips is a metaphor, these glasses were a metaphor.

This was all a front that was someone who is a global student. I stand before you right now as just a student.

I am a student, just another normal student today and I hope that this has helped you to realise the potential of you and a newbie working together to improve the school and 6th form experience. Just remember that through fear of being a newbie I may crumble but withy hope, I stand together with you united, commanding success.


Transcripts from the Big Discussion

I hope you all enjoy reading this blog…. watch this space as This Weeks blog will be about the difficulties of managing a healthy diabetic reading. It will be titled ” The not so sweet life” See you soon 😀


The transition team at The Big Discussion. Comment #TBD

Hello everyone, hope you all had a great lunch (I know I definitely did)

So this session is all about transition from paediatrics to adult health care.

Daunting, it’s a rather daunting and grim experience.

My friends – Thines, Charlotte and Terri –Ann will share with you some of our stories and I hope that you will find it informative and helpful.

So my name is Aneela, I am 17 years old and I have type 1 diabetes since January 2013.

I have been told on several occasions that I am going to be transitioned by the team that manages my condition for the last year but I suppose that I didn’t allow it to register because the truth is I don’t like the prospect of moving onto adult services.

Not because I don’t want to be an adult but because I have read several books about diabetes, transition and case studies of adult health care and I find the support given in adult health care terribly frightening mainly because you only see the endocrinologist twice yearly. That thought isn’t particularly because my pancreas and I are still in our honeymoon phase which means that my pancreas hasn’t retired completely from regulating my sugar levels.

What will happen when it does, will two appointments be enough to help me through that stage?

The other problems/fears I have with transition are:

  • The loss of the relationship between doctors, nurses and dieticians – I have known them since last year and I can speak to them with ease, we can occasionally go off topic and talk about my work with IDF and Diabetes UK. Its not just about my healthcare its about life as a whole too. Will that be the case in Adult healthcare or will I be another number?
  • The wide range of ages and loss of parental help –I am worried that in the unfortunate event of having to be hospitalised would I be surrounded by much older people than myself, will my mum be allowed to stay with me past visiting hours if I need her because currently in adult health care that is not allowed. We need an 18 – 25 ward so that this is possible and people don’t find it strange that our mothers and fathers are still a big part of our lives.
  • What if a decision I have to make for myself is not the best or I don’t think I can decide… can my parents still have an input on my healthcare until I am happy to make my own decisions. I don’t feel comfortable yet to make my own decisions because I don’t think I’m quite an adult yet, I still need help. I ask my parents for help with Uni choices, I still ask mum to talk to the GP because I feel awkward and the gp doesn’t listen to me, I still ask mum to check on me at night. So why can I have help from my parents for most things but not be allowed the same help with my healthcare.
  • The loss of key services – there are services that will no longer be available such as the emergency phone line to speak to a doctor at the hospital, the diabetic nurses role – will it still be the same – will they talk to me the way that paediatric nurses do, will the GP have more input in my healthcare, in which case it won’t work at all because I would not go to my appointments because the GP just doesn’t understand what I’m saying!

 All of my fears and problems aside, I would like to raise something rather important about transition. I don’t think it should be called transition because it’s almost like you’re getting an unjustified upgrade from Facebook or twitter where you have a completely new interface and your lost trying to find the your friends in healthcare (your services). I would much rather it be called graduation. Graduation from being a child to an adult in different stages so that the leap to complete adult healthcare is reduced. So, as a graduating child I would like there to be an 18 – 25 ward.


Hi my name is teri-ann and I’m 16 years old my experience of transition from child to adult services started when I was 15 years old. Due to various medical conditions I had a paediatrician that looked over my case and that I had meeting with every three months to check on progress. In October less than a month before my 16th birthday I went to see him and I was having some problems. I was also awaiting to go in for surgery later that month but due to my age my paediatrician discharged me without referring me on to anyone else to help deal and monitor these problems he just said If I had any more problems I would have to go to my gp. This was also a problem as specialists I see are in a different trust to my gp this means that my gp cannot see results from any scans or test the doctors have run unless they send letters to let my gp know the results. Also it means if I go into my local A&E my specialists can’t see any x-rays I’ve had making his job harder. Another example of transition I’ve had is the transition between my orthopaedic surgeons. This was an uncomfortable experience for me as I got transferred 3 times to different people care. This was after them spending months of not really knowing what to do then when I was referred my new surgeon won’t have read my notes or looked at my case meaning me have to explain everything to them again. Although my new surgeon sat down before coming into the room to see me to review my scan so when he came into the room he was already up to date and thinking of solutions which meant I finally manage to be booked in to have my first surgery thing was after over two and a half years of being passed around.

So now you’ve heard our stories and have the problems that may occur in your mind how about talking on your tables about the questions on the screen behind us.

TRANSITION SPEECH – Thines Ganeshmoorthay – Thines Talks 

Transition to many patients is a daunting prospect. Having had a paediatrician over seeing all my care from the age of 13 the idea of suddenly not having that security and support was scary. Talking to other young people they seem to have similar views. 

Over the last couple of years as I have been moving from paediatric to adult services I have experienced good and bad examples of transition. My main concern has been the lack of sign posting, just simply not knowing who I’d go to if I had a concern about a particular condition. Before my paediatrician would simply refer me onto the required specialist. Now I’m left with my GP, who doesn’t understand the level of care i require compared to my paediatrician. I am lucky to have a GP who has known me since birth but other young adult patients I have spoken to feel their GP doesn’t understand their needs at all.

Adult care in hospitals is obviously very different to paediatric. Even though I knew this, it was still very difficult to adapt, leaving me and other patients I’ve spoken to feeling quite stranded. Often the gap between adult referral and the first appointment can be months, again leaving young people feeling in limbo.

Taking to other young people many feel they get lost between paediatric and adult care. Specifically I have found rarer long term conditions are not followed up. I think is a real concern because if patients are not monitored their problems can escalate which is potentially dangerous for the patients health and the NHS. An example would be my experience with Tracheal Oesophageal Fistula. After the age of 5 1/2 I haven’t seen a TOF specialist. Reading the TOF magazine I have come to realise that there are complications with the condition later life and example being barrats oesophagus. However, I would have no idea who to contact if I had concerns.  I feel my GP doesn’t have a enough specialised knowledge to recognise the signs of deterioration in my condition.

In contrast the Cleft lip and palate services have provided brilliant transition, I have been sign posted from birth to young adult life about what services I could access, what operations were open to me etc. The MDT of specialities are constantly in communication with each other, as a result I feel supported able to make informed decisions about my health. I understand the circumstances are unique but other areas could learn from the brilliant care they provide.

As a result of my experiences I would suggest some strategies to help the problem of transition. It would be useful for long-term conditions such as TOF to have a centre people could contact and ask where they could get specialised medical help if they were concerned. Sign posting is key for long term conditions!

It would also be a good idea if paediatricians started to prepare patients for transition from the age of 14/15 so that by the time they turn 18 they feel ready. Transition preparation should be unique to the patient and should empower them to take control of their health. Once patients feel in control they are more likely to respond to treatment and seek help when required.

Thank you very much for your time and we invite you to discuss the issue raised in our speeches. 


Transition to many patients is a daunting prospect. Having had a paediatrician over seeing all my care from the age of 13 the idea of suddenly not having that security and support was scary. Talking to other young people they seem to have similar views.


Over the last couple of years as I have been moving from paediatric to adult services I have experienced good and bad examples of transition. My main concern has been the lack of sign posting, just simply not knowing who I’d go to if I had a concern about a particular condition. Before my paediatrician would simply refer me on. Now I’m left with my GP, who I feel doesn’t know me well enough to feel as supported as I did before. I am lucky to have a GP who has known me since birth but other young adult patients I have spoken to feel their GP doesn’t give them the support they feel their complex needs require.


Adult care in hospitals is obviously very different to paediatric. Even though I knew this, it was still very difficult to adapt, leaving me and other patients I’ve spoken to feeling quite stranded.


I have a friend who accesses mental health services and she told me that at 18 she was told she would have to go onto an adult mental health ward. She had huge concerns over this and was much more reluctant to seek help as she didn’t want to have to go onto an adult ward. For other young adults this is a concern and I think efforts should be made to make wards more young adult friendly so they feel they are being adequately provided for.


Taking to other young people many feel they get lost between paediatric and adult care. Specifically I have found rarer long term conditions are not followed up. I feel this should be a real concern, because if patients are not monitored their problems can escalate which is not good for the patients or the NHS. An example would be my experience with TOF. After around the age of 5/6 I haven’t seen a TOF specialist. Reading the TOF magazine I have seen that there are complications with TOF later life and example being barrats oespahgus. But I would have no idea where to go if I had concerns, which to me is very worrying.


In contrast the Cleft lip and palate services have provided brilliant transition, I have been sign posted from birth to young adult life about what services I could access, what operations were open to me etc. The MDT of specialities is constantly in communication with each other, as a result I feel supported able to make informed decisions about my health. I understand the circumstances are unique but other areas could learn from the brilliant care they provide.


As a result of my experiences I would suggest some strategies to help the problem of transition. It would be useful for long-term conditions such as TOF to have a centre where people could contact and ask where they could get medical help from if they were concerned. Sign posting is key for long term conditions! It would also be a good idea if

paediatricians started to prepare patients for transition so that by the time they turn 18 they feel ready.


Technology could be used to empower young people e.g. an app to make appointments/ and app about transition info.




* Spend some money on improving transition because I think it would improve over all care.


NHS England

* Commission some transition services inclu

* A clinical lead or designated person to over see transitional care

* Commission a linking centre for people with congenital and long term conditions.




* All HC professionals should be aware of the difficulties of transition

* Try to support the young people

* Adult HC could take a little more time with YP on their first appointment to ease them into adult care.

* Make sure there are not long gaps between paed and adult app.



* more paed training

* long term condition understanding,

* Make sure a long term care plan is in place for YP with chronic conditions



* start trying to take responsibility from around the age of 16

* talk to Health care professionals about transition early on



* Make transition a priority

* Continue empowering YP

The Big Discussion Team with BBC Radio 1 Surgery’s Aled Jones #TBD

Featured Blogger – Thines Talks “The Big Discussion” CYP Health Conferance

The wonderful young people of BCH YPAG, RCPCH YAP and NCB with BBC Radio 1 presenter Aled Jones and Michelle McLoughlin, Chief Nurse at BCH.
Next Update: Wednesday 23rd April 2014 – will be a selection of Speech transcripts from the event… watch this space if patient view is of interest to you. 😀 

After a year in the planning and organising by the children and young people of the Birmingham Children Hospital (BCH) Young People Advisory Panel, Royal College of Paediatrics and Child Health Youth Advisory Panel and National Children’s Bureau and the fantastic team of professionals from the three organisations on the 16/04/2014 we hosted ‘The Big Discussion’.  The Big Discussion started as an idea by Ellie Miler who is a member of the RCPCH YAP and was on the board as a governor for BCH. Her friend and her came up with an idea for a youth led event which bought together the movers and shakers within healthcare and children and young people to talk and to truly discuss what matters to young people. That fantastic seed which Ellie planted but was unable to see through flourished into The Big Discussion. This event was meant to have children and young people at the heart and it truly did, as one of the many tweets we got about the day, one healthcare professional commented that it was refreshing to see healthcare professionals being equalled, if not outnumbered by young people. One each of the tables there was at least one young facilitators and other young people who came as guests.   The day was professionally recorded and captured by representatives from The Reporters Academy (@TRAcademy), which is a media production company run by young people, which is very in-keeping with the themes of the day (Very much looking to see the finished product soon). The day was structured as a combination of key note speeches as well as four discussion topics, we as the young people came up with and felt were the most important areas in our healthcare that needed discussing. We were lucky and honoured to have Aled Jones, from BBC Radio 1 hosting and facilitating the day alongside the youth chairs (one from each of the key organisations). 

The day started off with a welcome from Michelle McLoughlin (Chief Nurse, BCH). She kicked the day off introducing all the key note speakers who would be sharing their insights and be speaking throughout the course of the day. She then handed over to Aled Jones, who took over proceedings with an fantastic flair and energy which lasted all day. He was able to keep the audience entertained, while keeping to time amazingly.   


Keynote from Kath Evans


After the ice breaker which Aled hosted, he handed over to the magnificent Kath Evans. Kath is the Head of Patient Experience at NHS England. We as the RCPCH YAP have a lot of love for Kath, she is such a strong and positively passionate advocate for children and young people’s involvement in their own healthcare and their rights to be heard. Her presentations are always amazing and this one wasn’t any different. 

Kath started off by reminding us once again why the voices of children and young people are important when it comes to making changes and in improving our health service. “Children and Young People are 22% of the population. 28-30% of all A&E and approx 40% of all primary care activity relates to Children and Young People – yet there’s not the focus on improving”
With such significant numbers, our voices is not one that should or can be ignored. 
Kath also promoted for “Health care with and for them (Children and young people) that’s needed if we are to change the future of health and the NHS. Young People have great ideas they want more health info in schools, they want health professionals to communicate more effectively with them. Generally things young people want don’t cost more money but we do need attitudes of health care professionals to shift and ‘get’ the importance of focusing on young people.”
She rounded off her speech with the starfish story, which can be found here. It is a really appropriate story which I will take with me forever. Anyone can make change, no matter how small your actions they have an effect and your small action can have impact on others an encourage them to make a small change too. That in  a sense symbolised what this whole event was about. We as young people came together to play our part in trying to change our health care, our small actions we hope will encourage and motivate those in attendance to go out and make their own little change. In the end together all our little changes will add up to a positive and big change to our healthcare.

Discussion 1: Communication


After Kath, we moved onto our first session of the day. The first session was on communication. Good and effective communication is the basis of all the discussions we were to have throughout the day. Communication between children and young people and their healthcare professionals are vital and we wanted to reiterate it’s importance and just how crucial good communication was. To ensure the communication and discussion during this session was effective, one of the youth chairs requested everyone place their electronic gadgets and phones in the centre of the table so they could concentrate on effective face – to – face communication. One of the stand out parts of the introduction was a role play acted out by one of the youth chairs and the young facilitators. The role play consisted of the youth chair standing behind a curtain to illustrate how confidential conversations behind curtains on a ward isn’t. “Curtains are not sound barriers” , it doesn’t respect the privacy and confidentiality of the patients and we as young people don’t really like other people hearing about our personal health issues and things.  After the wonderful introduction and presentation we moved onto the discussion part where we got to discuss the three main questions which the communication group came up with, which were: 

  1. Could anyone put forward solutions about how to improve communication between medical professional and their teams?
  2. We don’t think talking behind a curtain is appropriate. Can you come up with more suitable places that medical professionals should use when consulting patients about their treatments? 
  3. How can communication be improved between doctors and their patients? We want young people to be involved in their treatments and doctors to talk to s, as well as our parents. 

After the discussions, the floor was opened so the representatives present were able to share their key insights from their own table discussions. The main conversations revolved around the topic of how to maintain confidentiality and privacy. The first discussion surrounded the illegibility of the writings of doctors and nurses, to this end the solution recommended by the floor was the use of tablets and other electronic devices in order to record the notes and then they would be printed out and placed on file. This for one, heightens confidentiality as the notes are being written up on a tablet and therefore is under password lock. The point of using tablets during ward rounds was also addressed in a session at the RCPCH Annual Conference which I attended last week, which spoke about how the use of electronic devices such as tablets can increase efficiency, as well as speeding up ward rounds.
The second point, was referring back to the curtains role play, in order to upkeep confidentiality and privacy one of the suggestions was the use of two ward rounds and actually asking the young person if they were comfortable talking about their treatment on the ward or if they prefer to discuss it in private. If the young person wants to be spoken to in private then that should be something that is accommodated for and the doctors come back on themselves and take the young person to a private room to discuss their health and treatment. This would be backed up by the fact, that we believe it won’t just be one person who would want to discuss their health and personal matters in private.
The third point of discussion was whether or not children and young people were aware of their rights while in hospital. Many present at the event were not aware of the UN Rights of the Child article which discussed the basic rights children and young people are entitled to. The feeling was that if young people knew what their rights were than they would not feel as scared to ask to be spoken to in a private environment. To this end, the use of phone applications with the rights of the child outlined in an age appropriate fashion was needed. This would ensure that as many children and young people are reached as possible. Then the usage of PHSCE lessons in order to make children and young people aware of these apps and how to get the help and support they need as well within the health service.
One of the last things which was discussed in this session was on the topic of whether doctors had appropriate training in communication when it comes to talking to children and young people. There has been consensus among the RCPCH YAP that some doctors definitely need some for of communication training, especially the ones who qualified before the last decade, as the newer doctors becoming qualified are having communication training embedded into their time at medical school. We felt that communication that made us feel involved in our treatment was important because at the end of the day “it is our bodies that are being affected, our lives that are being changed and our futures that decided”.  Combined with communication we felt that their personality mattered as well, as one of the young people highlighted “Just smile at us”, we want to be made feel comfortable. Having been admitted into hospital, some people may be apprehensive and scared and a genuine smile and kind and reassuring communication can go a long way. This feeling can be simplified in this acronym for SMILE which I found on the twitterverse while discussions were being had:

S Say hello to the person

M Make the person feel at ease

I Introduce yourself to the person

L Look at the person and listen to what they are saying

E Explain what you will be doing for the young person in a clear way

Discussion 2: Health Education


The second session of the day was regarding health education to illustrate this point we invited the organisation Brook to champion the need for sex and relation education in schools and for young people in general. they proposed several ways of doing this; through the use of PHSCE (Physical Health Social Citizenship Education) lessons in schools and the use of school nurses in schools. They also addressed the need for a holistic approach in relation to sex education in schools, including addressing gay sexual health and relations. 

Key Questions;

  1. Should Sexual Health education be portrayed more in the media?
  2. Why is Gay Sexual Health Education not a main topic in PHSCE?
  3. Should there be a  full time nurse at every school?

Again I will pick some of the key discussed points that came out from the table discussions. The first and most important discussion was around the best way to access young people to provide health education. The questions was would it be through the school nurse, walk in centres or social media or other means? At the moment PHSCE lessons are not, at least in my experience, not the most engaging lessons in the curriculum. They were the least attended sessions at my College, and the one were the topics discussed were taken with the least amount of seriousness. This was especially, as most of our PHSCE lessons consisted of videos made in the 1990s and these lessons were delivered by our subject teachers. Therefore, opening up to them was one of the last things we wanted to do. This would be were the involvement of the school nurse would come in, as they would be an impartial individual to take these lessons and would be in a more suitable place to advice and signpost young people. If school nurses or external speakers were to come into colleges more, I think that would engage the students more and get them learning and listening more. The most engaging of my PHSCE lessons were in my later years, in year 10/11, when we had the choice of sessions we could attend and they were all delivered by outside speakers who were able to delivered personal and emotive stories with advice which we took more seriously and were the ones that touched us and made us think the most.
Another point raised by one of the young people was the need for separate gender, classes for sex and health education. Sometimes classes for these sessions, depending on the school, are mixed. The feeling behind this was while in certain situations it can be useful, i.e.. when try to illustrate and teach about the basic relationship  between the genders, it is more beneficial to have separate classes, as young people feel they are able to open up more to peers of their own gender. This would prompt discussion and therefore get young people more interested in learning about things that effect their and others health and wellbeing.  Along with this, there was a strong call from everyone present for peer sex and health education to be made compulsory in all schools in the country. The life skills and health and sex matters discussed in PHSCE sessions are very important and it is important to learn about things beyond the basic curriculum. It is unfair to deprive some students of this. We are all entitled to a equal and fair education, and sex and health education plays a big part in this. There needs to be some standard set as to what needs to be covered in these sessions, I think, and I think there needs to be a multitude of agreed resources published online on PHSCE website so all schools have access to the basic tools and resources when it comes to covering these topics.  
One of the final things that was raised and I would like to pick up on is around having guidelines and and defining roles of school nurses. We all understood how important school nurses could be if utilised efficiently and properly. In some schools, such as mine, we didn’t have a school nurse we had a registered first aider. Therefore, they wouldn’t be equipped to deal with the same things a school nurse would be able to deal with. This raised the question, what are they having to deal with? Among treating the young people in school who have minor injuries and immunisations, do they also have the role of safeguarding the wellbeing of the pupils of the school? I think the general consensus of the day was that they should and as such there should be more school nurses to assist with the role of safeguarding. I think in schools were there isn’t a school nurse or where the school nurse has to work over several schools/ sites, there should be a designated full time nurse. However, having a full time school nurse isn’t enough, the pupils of the school need to be made aware of who their school nurse is and they need to have access to information about how, when and where to access them. One of the young people at the event commented that they only saw and heard about the drop in sessions for the school nurse in the very first assembly in their first year. This is not acceptable, the students need to be kept updated when their school nurse is available for drop in sessions, and also in the school diaries students should have information about how to access their school nurses as well which is updated every year. 

Discussion 3: Transition and Sign Posting


After a delicious lunch came the session I had the pleasure of presenting with my group on transition and signposting to adult services. All of us shared our own personal experiences of transition, as each of us are at various stages of transition it helped to illustrate the different points at key stages of the hand over process. As someone who was about to go through transition, one of my peers said that they felt that transition was  
“a rather daunting experience”. With some of her key fears and concerns being that there would be a “loss of the relationship between me and my doctors, nurses and dieticians” and she was concerned about “the wide range of ages” on the adult wards and “the loss of parental help” and the“the loss of key services” and support structures. Another one of my friends, who has gone through transition services commented that she felt as though as her care had “not been adequately followed up into young adulthood” and called for “sign positing to help young people manage their long term condition”. Then came my turn, as someone who has fully come out of transition services, I highlighted that “the transition process left me feeling lost and not knowing where to turn.” And I called into question ‘Why can’t there be consistency between transition processes within the UK?’. (A full copy of my speech can be found below). With this we moved on to our key discussion topics.

Key Questions:

  1. Who should be responsible for transition and is there a need for a new health care professional specialising in transition? 
  2. How could the transition of people with long term conditions be improved? 
  3. Should there be “adolescent” wards in hospitals?

While transition is a huge topic, and one which I could dedicate a whole blog post to I am going to restrict this section to three of the key things raised in discussion by the young people and the other professionals present.
One of the main things we would like to see is the creation of more adolescent wards which, can accommodate 16 – 25 year old young people. The justification behind this is as one of the young people (whose blog you can find here; put it “I am worried that in the unfortunate event of having to be hospitalised would I be surrounded by much older people than myself”. Being in hospital is a scary event in itself and therefore, it can be comforting to be surrounded by people around your age. This also helps in the transition process as the people you would be on the ward with would be going through the same process. Another justification to this would be that, having this kind of ward would allow young people a chance to be weaned off having their parents on the ward all the time. When you are on a paediatric ward you are allowed to have your parents come and go at any time and they are allowed to stay with us overnight. However, when it comes to adult wards this is not the case, and they have to ascribe to visiting times, which if you are 18 and it is your first time on the adult ward, losing that support structure can be quite mentally distressing and affect your mental health. Therefore, having this in-between ward would allow the young person to get used to this new prospect but if you needed your parents to stay then they could and it would be taking place in an environment were you wouldn’t be judged by other patients on the ward as they are the same age as you. While we understand due to space constrictions  it may not be always possible to have a separate adolescent ward, as a compromise we would like to have a separate section is possible of the paediatric ward which could be treated as an adolescent ward and set up as such.  
The second discussion point I would like to highlight is another point raised by one of my friends and young people, and that was on the point of changing the name of transition to graduation. I think the best way of explaining this is to quote the young person who suggested the idea. “I don’t think it should be called transition because it’s almost like you’re getting an unjustified upgrade from Facebook or twitter where you have a completely new interface and you’re lost trying to find the your friends in healthcare (your services). I would much rather it be called graduation. Graduation from being a child to an adult in different stages so that the leap to complete adult healthcare is reduced”. I completely agree with this. Transition is a bit of an outdated term, and for a young person, graduation shows a kind of growing up and a moving onto pastures new. It makes the whole process sound less intimidating and more like a life achievement, which it is. 
The final discussion point I would like to talk about is a initiative which Kath Evans and others at the event higlighted and it is something known as the ‘Ready, Steady, Go’ program and is something which has been going on at Southampton Hospital. Many attending the event, including young people and professional had not heard about this process. The ‘Ready, Steady, Go’ Programme is “a programme to help you get ready and feel confident to move to adult services around 18 years of age – at your own pace.” It starts the process when the individual is 13 and allows them to get familiar with adult services and their facilities. Then moves onto having joint appointments with adult and paediatrics doctors and teams and follow up appointments with the combined teams when the individual is 18. As I commented in my speech my transition left me feeling lost, however this elongated process would have allowed me to get used to the adult services and allow me to settle into my university before I had to deal with all the complications and stress that came with having a lot of responsibility dumped on you with no help and no guidance on how to solve the issues you have. More information about this program can be found on the Southampton Hospital website:


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Discussion 4: Mental Health


The last session of the day focussed on mental health and mental illness. We were lucky and fortunate to have Matt Windle, who was Birmingham’s Young Poet Launderette of 2007/8. He presented a poem titled ‘It can start when you are young” and you can view a reading of it here. His poem highlighted a many things, the things I would like to pick up on is that “Mental doesn’t mean crazy just relates to the mind”and the fact that there is a “Suicide attempt every 4 minutes”.  This powerful poem left us a lot to mull over in our groups as the young people leading this session outlined the key questions of this discussion.

Key Questions:

  1. Can more be done to end stigmatisation of mental health patients? 
  2. How can we raise awareness and education of mental health issues? 
  3. Is it possible to take a more holistic approach to treatment of mental health issues rather than a biomedical approach?

One of the main things that sticks in my mind from the discussion that arose is the point that was repeated by professionals at the event was the need for early intervention. Early intervention is something that we as young people have been advocating for a long time, we believe that the earlier the intervention the better outcomes for all involved, and in most cases can provide the patient with the best possible outcome. This point was best summed up by an analogy used by one of the professionals, that of a fire. “It is easy to put out a small fire than to put out a large fire. A Small fire is things like stress and anxiety, however if it is allowed to develop than it becomes uncontrollable”
The second point was pushing for a holistic approach to a young person. We want to see a holistic approach in all aspects of our care, and in this approach mental health and wellbeing would be a key part of any discussion about health. There was a general consensus that the more interest a professional takes in us and the more caring they are about our life on the whole rather than just on the specific thing they are seeing us for, we are more able to open up and to discuss mental health issues. It is all about trust, you are more likely to share sensitive things, such as mental health issues, with those you trust. Typically this is mostly with our peers, however, if we were able to build a similar relationship with the healthcare professionals within our lives, they are more suited to be able to signpost us to the right places (I will be talking more about this later).  The agencies which we would ask to be looking at taking a more holistic approach would include and not limited to GPs, school nurses, teachers, community worker and social workers. 
The third discussion point of the session was on the difference between mental illness and mental health.  The 5 ways of wellbeing for mental health, which has been promoted by various organisation, such as the NHS and Mind (the mental health charity), was raised. This was the first time I had heard about this. While we, at the RCPCH YAP had discussed mental health and how to get better access to mental health services, I didn’t realise there was 5 ways of maintaining your mental health. 
According to the NHS website the 5 ways to wellbeing for mental health is: 

  1. Connect – connect with the people around you: your family, friends, colleagues and neighbours. Spend time developing these relationships.
  2. Be Active – you don’t have to go to the gym. Take a walk, go cycling or play a game of football. Find the activity that you enjoy and make it a part of your life.
  3. Keep Learning – learning new skills can give you a sense of achievement and a new confidence. So why not sign up for that cooking course, start learning to play a musical instrument, or figure out how to fix your bike? 
  4. Give to others – even the smallest act can count, whether it’s a smile, a thank you or a kind word. Larger acts, such as volunteering at your local community centre, can improve your mental wellbeing and help you build new social networks. 
  5. Take Notice – be more aware of the present moment, including your feelings and thoughts, your body and the world around you. Some people call this awareness “mindfulness”, and it can positively change the way you feel about life and how you approach challenges. 

“Mental health is about building ones resilience to stress and to keep yourself mental healthy” as one of the guests alluded to. Through following the 5 ways to mental wellbeing you can ensure that you look after your mental health.  Mental illness occurs when your mental health is not being looked after”. Therefore, it is important we prioritise our mental health and ensure more young people know about what mental wellbeing is and how to ensure they are looking after their mental health. Along with this comes the discrepancy in the definition of mental health, as it became apparent in our discussion, both prior and at the event, young people and adults (including healthcare professionals), have a  very different conception of what mental health means. When the words mental health come into a conversation with young people, all the stigma that is associated with those terms comes rushing out and the need to talk about it disappears. There is a feeling that young people Don’t know who to talk to”, owing to this stigma and for fears of what their peers will think. Therefore, to this end one of the recommendations was engaging with young people more and educating them with the use of mental health literacy and again working with agencies mentioned above to ensure young people are signposted to the right place when they are in need of help. This is in the acknowledgement that “professionals can’t know everything but they can and must signpost!”

Question and Answer Panel with Youth Chairs and Health Professionals


The people sitting on the Panel were Michelle McLoughlin, Kath Evans, Dr Maggie Atkinson (England’s Children’s Commissioner) and Roy Lilley (NHS Writer, Broadcaster, commentator and conference speaker) as well as the three youth chairs (Pictured right). This allowed a chance for the children and young people and the healthcare professionals of the audience to grill the panel of experts about the topics of the day as well as on topics which we felt had not been covered in the day. Here are some of my stand out points from the discussion as well as some key quotes from the panel. 

When asked about the future of the Big Discussion, the young chairs expressed their enthusiasm and passionate to not let the discussion die down. We started of ‘The Big Discussion’ and we are all united in saying that we will do what we can to keep this discussion going and keep holding the key members to account and pushing and striving for excellence in children and young people healthcare. We can only do this by “Keeping on challenging, that is how things change”, as Dr Atkinson eloquently put it. Our determination and passion was only fuelled even more by the support that we have from key people within the NHS such as the Children’s Commissioner, Kath as well as the Chief Medical Officer who prioritised child health in her report.

When questioned why there were no commissioners from Clinical Commissioning Groups present at our discussion, the wonderful Kath Evans came back with “Events like today energise health care professionals and provide opportunities for staff to hear directly from young people about their experiences. There’s lots of good stuff in the NHS but we need to be honest there’s lots we can be doing better, having Children and Young people’s leads in Clinical Commissioning Groups and connecting and working with young people is the only way we can improve the NHS. ” While there was no clinical commissioners present, there were enough people with influence present to have impact and to encourage CCGs to recruit young people on their groups and hear and learn from our insights. Kath also advocated “Celebrating the bright spots (where there were excellent models of care) and spread them across the country. “

A lovely and light-hearted but important question on which we ended the question and answer panel was “What did the panel have for breakfast?”. This got a varied response from the panel but all humorous answers, including one panellist who mentioned that she only had a crumpet. 

Key note from the Children’s Commissioner, Dr Maggie Atkinson  


After the question and answer panel, Dr Maggie Atkinson took the stage. Dr Maggie Atkinson “was appointed Children’s Commissioner for England in 2010. The Children’s Commissioner promotes and protects children’s rights in England by listening to what young people say making sure adults in charge take their views and interests into account.” She has always been a great supporters of our rights in healthcare just like Kath and all other present at our event. She really drove home the point we as young people have been repeating for ages, the point of talking to children and young people and not just to parents. In her speech she also pointed at the speed at things were changing, comment that things aren’t changing ‘if we held this event 10 years ago the things being said would be the same’. She also backed up Kath’s earlier point of ensuring that children and young people need a seat at the table at the level of CCGs. That is the level we need to be if we are truly to influence and make changes that improve our lives. CCGs are in charge of paying for and financing the changes within the health system. If we really want to influence change, we need to be allowed the opportunity to sit at alongside CCGs on their panels, to ensure our voices get heard. Dr Atkinson was fully behind this in regards to this. 
She also highlighted some key resources, which she said were fully copyright free and that we should all be using in order to maximise the collaboration between children and young people and health care professionals and our advocates. 
The website of the Children’s Commissioner and the resources she alluded to can be found here:
She rounded off her speech with a quote from Mark Twain which can be found below, this was a really passionate and persuasive way to round off her speech as well as the day:



My Final Thoughts

With the day ending on a high and positive note with Dr Atkinson and Aled, it left everyone present on a high. At the end of the day we asked all attending to write down a pledge of what they will do on the back of this event to make a change in their local communities or within their place of work. We were really excited to see the amount of pledge cards we got back. We will be sending the pledges back to the individuals in the future to remind them of the pledge they made and to see how they are getting on. ‘The Big Discussion’ got a massive spark and fire going behind it not only on the Twitterverse on @TheBigDiscuss as well as on the #TBD, there was a lot of enthusiasm which you could see in all who came. This is including the young people who helped organise this, we were so relieved the event went really well in our eyes. However, as the end of the day like I said in my last blog ‘Words are useless without action’, we had ‘The Big Discussion’ as a way of sparking action. We have started of this reaction and we hope to see action coming as a result of it. 
We as young people will keep to our pledge of keeping this drive and the discussion going. We will ensure that the flame we lit at ‘The Big Discussion’ doesn’t go out. We will keep fuelling it and we will keep pushing for more collaboration with healthcare professionals and our advocates. As the day highlighted, together our actions can be much stronger and our results doubled with our efforts halved. 

Volunteering for the future

“Would you reject a gifted job from God?”

Everyday something new happens, a life is taken, a life is changed, a life is born…

In the world, there are people whom can’t attain their potential because they lack resources, they lack help, they lack role models… fundamentally, this facility/world lacks volunteers.

As adolescents, our teachers informed reinforced the need to be ambitious because

“The pessimist see’s the difficulty in every opportunity and the optimist see’s the opportunity in every difficulty”

(India)I would like to tell you a story about an individual whom became the World’s youngest principal…

Babar Ali, a mere 19 year old boy, the only boy fortunate to have been offered a scholarship. He walked everyday in scorching heat, with a parched throat and the weight of a 3 kilo rucksack. For 5km’s. He would return home exhausted but because he was the only individual who attended school from his village… He provided free education to the underprivileged children in his locality every evening,

 A hero in his own right, he did what the government and millennium developments goals were set out to achieve.

I admit that this may have been a small change… but small projects have revolutionised the world to improve patches of society that had been neglected

The leading volunteering recruitment agency Vinspired states:

  • Passion is at the heart of everything volunteers do
  • Volunteers are opportunity spotters, they find ways to develop themselves and others
  • Volunteers are action orientated; they will do all they can to make sure that a campaign or their undivided attention to help someone is successful.

If there was one thing… that we can do to become better people, better citizens we need to help the world and our fellow humans.


Please volunteer your time … you don’t need to donate money to make a difference,  all you need to be able to do is donate your time, your skills or your friendship towards a cause or someone whom needs it most…

Not only will it help others…. it will help you. Help you to develop in your professional and personal life

One person, one difference, one more change… start the chain reaction that matters!



The Independent Inequality Extended Comment piece


Image by saxarocks via Flickr

Why not read the full article by “The Independent” with the published comment piece by Kidwarrior @

Why is it that when we enter the first classroom at school, we are introduced to colour in a way that communicates gender?

Why is it that parents generally feel that having a girl walking alone in town will place her in more danger than the boy who is the same age- just taller?

The question that we should surely ask is, “How can we change this stereotypical behaviour, in the future?”

We, as a society have to introduce this change. We have to let our children know that they are equal and that they will be treated as equals. Let’s make everybody realise that it is our responsibility to introduce this change by setting an example, as that is the only way.

If my generation committed to gender inequality, it would be eradicated within my lifetime.

The problem is compounded by the lack of awareness through uneducated masses globally. As illiteracy, creates a situation whereby the achievable, quickly becomes unachievable.

So, let’s make a promise, we will remove this barrier and create a global society that is literate and aware, catapulting us into a new world where these two words, ‘gender inequality’ are rendered into oblivion.


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P.s the image is from the new plugin zementa and is license and copyright of somebody else, it is not my own creation just simply using it to make my blog look interesting!

Are youth to blame for the problems in society?

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Watch this video it is amazing!

The youth of today, is often shunned and blamed for problems within our society – perhaps never more than following the recent riots. But, how many times have the media and the government shown the good deeds that young people commit?

Groups of young people congregating on street corners are viewed with suspicion, but according to a survey conducted at NCB, young people simply don’t feel safe when they are on their own during the evening. This issue has been made worse by the violence that erupted around the country following the death of Mark Duggan in Tottenham. I believe young people followed the example of adults looting and rioting within London, by conducting anti-social behavioural acts themselves. The media highlighted the threat that groups of teenagers can pose, without making it clear, that many young people hang out together in groups just for the sake of feeling safe within their own community.  So, if the media can identify this then why are the police and local community leaders not prepared or well equipped to intervene and prevent these events from getting worse!

Also, there is the usual stereotyping issue that seems to cause a lot of conflict across the nation. For some reason, adults seem to think that when young people are simply talking quietly or too loudly in a group, on the street, that they must be involved in some sort of suspicious or indeed illegal activity. Well, what if they are just simply there because they have nothing to do!

Despite all of the factors that may cause the way that young people act, they are being indicted and persistently a victim of scapegoating.

Will they ever acknowledge the good things that young people do?

Children and Young People NOW! Manifesto – My Verdict…

Youth parliament delegates gather for official...

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The full CYP Now manifesto and comments can be found on their site by scrolling to the middle of the home page…

My comments did appear in the magazine and website on behalf of Young NCB and the National children’s bureau. – Main NCB Website –  NCB Blog – Young NCB (If you are under the age of 18 then you can join NCB and have your comments heard. They are currently recruiting members for their young Advisory Board, so do become a member and apply!) UK Only

The importance of providing young people with out of school activities within a safe distance from their home. I.e. does kidwarrior agree that young people should have a mixture of opportunities available to them wherever they live in England?  

The number of opportunities available in England still seem to be based around where the majority of people are located, while smaller places such as villages are often ignored/not considered. When opportunities  are available they are not always on convenient days and are not always widely available. For example, the new library campaign called “Headspace” is only available in selected libraries across the country. The problem with this means that opportunities are not always based within their particular community in their town or city. Travel costs prohibit the development of essential social skills required in workplaces and school because it is simply too expensive to use bus transport or it’s just not viable for the attendee to walk. If a mixture of opportunities are to be brought into communities it would widen young people’s social circles, networks and understanding of people from different backgrounds and cut down youth crime rate as many crimes committed by young people is often due to a need to alleviate boredom. It will help to abolish particular stereotypes that one may have about other peers. Closer communities, closer opportunities, creates a safe and comfortable environment for all to live within. However, the problem of the number of young people who will access these opportunities is still dependent on the basis that it is free, as often young people’s parents cannot subsidise the costs. These out of school activities could also include career counselling services as well as many young people are uncertain of the correct career for them to follow.

Whether all young people should be entitled to more specialist help if they have a particular need, such as housing issues or problems with their parents, as the document call for.

So many spending cuts have been made to young people’s specialist advisers such as; “Connexions”. The problem with this is that often young people who require help or guidance cannot find somebody who they can approach and trust. Previously, the concept of school nurses coming into schools was to make sure that if somebody had a concern of anything they could speak to somebody they did not know directly. But, as time has gone by, school nurses are now responsible for more schools and so cannot provide this service very often. Specialist help is available but it is just not sufficient to support the individual anymore. Young people who may have a particular need or concern often stay quiet because to receive the help they need, numerous channels of networks are contacted to find a specialist. Specialist services need to be available in the mainstream so that advice is directly available and not through channels of networks!

Also does she have any thoughts about the importance of volunteering and even our call to stop the investment in the National Citizen Service and spend the money on existing established initiatives instead?

Volunteering is an essential  part of being a good citizen but, I feel that if you want to be a good citizen you won’t do it over one summer in some national program, it should be done across many years so that learning can be passed on. The Manifesto states “NCS would be better used in supporting and developing existing year-round volunteering opportunities for young people across the age range”. It may look good on a CV to show that you did support the National Citizen Service but, the employer or the higher education authority should be focused on the numerous local projects, completed throughout their secondary school life. This will show that they have a passion for what they did and that it was evidently for selfless intentions.

Another way of looking at ‘volunteering’ would be to make it part of the national curriculum and UCAS points etc should be awarded to students who volunteer, as ‘volunteers’ develop better social communication skills and empathy towards others.

The success of this manifesto is reliant on the basis of how well we will be able to make it happen. There are several factors that could enhance the success of the manifesto but, I feel that these three would be best:

  1. If we want to “Strengthen young people’s role in decision making”, we have to increase the awareness of this manifesto and its contents, gaining maximum exposure and ensuring that young people get the message and are aware that there is a ‘national and local youth scrutiny board’ that is working on their behalf, through a variety of media channels to support positive change in the perceptions of young people. This would ensure that their opinions are brought to the attention of the nation so that they can see the true value of young people and impacts parliament.
  2. We are going to need “Professional adult volunteers” to ‘mentor’ young people maximising the impact of our initiatives so that young people’s voices have a strong impact on society and government. This will mean that young people will be able to seek and learn from these ‘mentors’ when required and they can act as ‘points of contact’ to aid decision-making and enhance the effectiveness of national campaigns.
  3. The marketing initiative will require youth to engage other young people. This will mean that the marketing campaign will be created with youth at the forefront, recommending and overseeing what strategies they know will work because they are the target audience.