'My Right to the Highest Standard of Health' - RCPCH YAP, PCG and YPHSIG.
The Royal College of Paediatrics and Child Health hosted their annual conference at the International Convention Centre between 8th - 10th April 2014. I had the pleasure and honour of being invited to speak and attend along with other members of the Youth Advisory Panel (YAP) (Pictured above). We were all delighted to attend as we all believed very strongly in the fact that "No matter how young a child is they have the right to be involved in their treatment". This was one of the key messages we were trying to put out to the audience of paediatricians, researchers, professors and other healthcare professionals and advocates who were present at the conference. Members of the YAP had the utmost honour of opening the very first plenary on Tuesday alongside the College president, Dr Hilary Cass. This was our very first opportunity to get some of our key messages that we wanted to get out during our time at the conference, some of those messages and take away questions that were expertly expressed by our Lisa and Mohini were:
1) Just how good are paediatricians at listening to Children and Young People (CYP)?
2) Encouragement for more collaboration between services, with a particular emphasis being placed on the collaboration between paediatric and adult services during transition.
3) The rights of CYP to be consulted about their treatment, no matter what their age was highlighted.
4) Another key note, was that there was a call put out to have literature that has a focus on how the condition effects us as CYP, "We don't want to know everything" says one of our panel.
These messages were greatly received by those in attendance and geared us up for our first ever symposium at the RCPCH conference. Our Symposium was entitled Participation and Accountability - 'My right to the highest standard of health' . This was a great honour for us, as the RCPCH YAP, as it was the first time we had been given such a big slot, at the "UK's largest paediatric conference", to talk, discuss and highlight the key issues from a young persons perspective of what we perceived to be the highest standard of healthcare and to share our key insights and suggestions on how to achieve this.
One of my personal highlights from the first day at the Conference was the session hosted by the National Institute for Health Research (NIHR), this session was titled 'The NIHR Clinical Research Network Children's Theme - A new era in supporting paediatric research'. I was really interested in this session, as it was another session which had the involvement of young people and the session was kicked off by the young people. The young people were members of the clinical research network from around the country and they were part of organising and presenting the Generation R event which took place in September 2013 at the Science Museum. I was a part of the steering and organising group for this.
During this session one of the key things which I took away from this was an example of amazing practice which I would love to see represented and copied right across the country for a multitude of conditions. This example was presented by Professor Tim Barrett who is a Professor in Paediatrics, Reproduction and Genes Development at the University of Birmingham. The example he presented was for a condition known as Wolfram Syndrome. The idea was a Multidisciplinary Team Clinic provided for these individuals. He described this as a 'one stop shop', where over the course of two days the young person met with all of the clinicians and had all the tests they required rather than having the appointments spread across a number of days across the year. There are many advantages to this, as someone who has a long term condition myself, being able to see all those involved in my care and to have all the tests and examinations I need in two days is much better in terms of having to take less time off school and therefore ensuring that my condition gets in my way of life as little as possible. This system allows the individual to live a much more uninterrupted life. More information about this can be found in the presentation below:
Wednesday came about and we had a extremely fun morning preparing and putting the finishing touches on all of our speeches and presentations. We always have a laugh as a group and the morning wasn't any different but amongst all this we were able to prepare for one of the biggest sessions we had to give. While I am unable to summarise the whole afternoon due to the length this post shall be, I shall summarise the main points, insights and highlights of the afternoon using quote others and I tweeted from the session. For our symposium we were grateful to be joined by the chair and vice chairs of the Parents and Carers group (PCG) and Damian Wood, a consultant paediatrician and representing the Young People's Health Special Interest Group (YPHSIG) of the RCPCH. Our session was wonderfully chaired by Heather, who made sure we stayed on time and introduced us to the present audience.
'Don't talk about us, don't talk around us, don't talk over us' . This quote can as a result of the session discussing the impact of the Francis report and how it has implications upon child healthcare. This point was highlighted again during our contributions towards the writing of Chapter 4 "the voices of children and young people" of the Chief Medical Officers report and our work with the Children and Young People Health Outcomes Forum summit last September. This was a key theme which we as a panel wanted to get across, it was around the topic of communication. It was the most recurring theme of the afternoon. We wanted to see more effective, age appropriate communication between consultants/ health professionals and the young people, as well as communication between the professionals and services as well as appropriate communication between the professionals and our parents. We felt that communication only works well between parents and the professionals and we wanted to re - emphasise the rights of the child and the right of the child to be involved in all parts of their care. At the end of the day, as Mohini has coined, 'our bodies, our lives, our rights'. A key and powerful statement which should never be forgotten.
'Children can be competent, children can be mature & children can understand'. This carries on perfectly from the previous point and was raised in the session discussing the YAP involvement in the Nuffield Bioethics Committee work last summer. This point came up as a result of the fact that we believed that once a young person is diagnosed with a long term condition it can force the young person to grow up rather quickly. Therefore, we become more active and more wanting to get involved with what is going on with our bodies. Hence, we want to be communicated with just like an adult, we care about what our bodies go through, as we are the ones that experience the pain and the implications of our condition and therefore should be involved in as much as the decisions making process as possible.
'Humanity must be put before money and reaching targets'. This came from my talk which I delivered on the key insights and challenges for paediatricians, healthcare professionals and advocates. This point came about when talking about the relationship between young people and their healthcare professionals. I felt this was an important point to be raised as I felt that healthcare professionals must have compassion for their patients. This can only be achieved by effective and appropriate communication between these two key stakeholders. While recognising that economics and money is an important factor, to us nothing is more important then patient experience and patient outcomes. When money outranks patient experience that is when outcomes begin to suffer, at least in my opinion.
'The 2 C's of good clinical care - communication and compassion'. This fantastic summary quote was provided by Anne Wilson, who is one of the vice chairs of the PCG.
The session of presentations was split by the audience with the YAP. This provided a perfect chance for there to be an active dialogue between the YAP, PCG and the audience who was present. This allowed the audience to present questions regarding the material presented up to this point, as well as giving us a chance as young people to present questions to those who were there.
The sessions that were presented after this contained portions which I found to be extremely harrowing, thought provoking, inspirational and informative.
'When is child & adolescent mental health going to become a priority & not an afterthought?' Mental Health is something we as a panel feel is a very important issue which is not getting as much attention as it needs especially as '3 out of a class of 30 are likely to have mental health issues.' This topic was presented by Jane and Lisa who were also instrumental in the launch of the MindEd program which the College has been developing and has recently launched. "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." And the program can be found on http://www.minded.org.uk/.
Mental Health is something which is important we take care of in this country, as it is something which can go unnoticed for a long time and can be having significant impact on a young persons life and development. Even for me, it was surprising to hear that my friends who I thought I knew had gone through mental health issues in the past and the difficulties they faced in getting help and support when they needed it. It really pushed home the message that everyone is susceptible to having mental health issues, not just those with disabilities or other medical conditions. We need to ensure that people are not allowed to fall through the net and the support is available to those who need them when they need them. This can be through one on one, face to face consultations, on-line forums where there is peer support, or a phone service where individuals can call up and talk through their issues.
Sometimes, it is really helpful to have some present within the school setting who can help with the issues, in my case and as with the case of one of my friends, it took a teacher within the school setting to identify that there was something going on which we were not aware of. Sometimes, when you have mental health issues, you are the last person to become aware of it. As you begin to feel it is normal.
Specialised paediatrics training for GPs has been shown to deliver better outcomes for CYP in Sweden, a model to be copied. Then we moved on to another one of the YAP 'bugbears' as it were, we feel really strongly about the role of GPs, especially through the life course of a young person with a long term condition. We recognise their importance during the transition process as well. However, one of the main things we feel need improving within this service is GPs training, especially in regards to their paediatric training. One of our members commented that GPs treat us as though we are mini - adults. Sometimes, this is not the right thing to do, as young people our bodies are constantly changing and therefore treatments need to be tailored to our individual needs and individual cases. This would require paediatric training, which has been as illustrated above to provide better results.
1986 - first time parents were accepted in all parts of hospital. This was something which I found to be really astonishing and was something which was highlighted in one of our final sessions of the symposium presented by
Pamela Barnes representing Action for Sick Children. I could not imagine what it would be like to be on a ward by myself when I was younger. My parents were the core of my emotionally and physical stability when I was in hospital. When I was trapped on the wards with fractured they had to act as my communication between myself and the nurses and also to act as a way of ensuring mentally I was stable. Spending upwards of 6 months at a time in a ward by myself can do a lot to a person and having my parents there and always able to stay really helped. I could not imagine what would have happened if Action for Sick Children and other key organisations did not push to allow parents the right to be with their own children at whatever times they wanted.
'Words are useless without action'. This sums up perfectly the ideas of us not wanting to feel like our views are an act of tokenism. We have demonstrated some of the key issues we think that young people in the UK face and we have also presented some solutions to these problems. Now the time has come for action to come and for our words to be developed into actions and plans to improve better outcomes for children and young people. At the end of the day, that is what this is all about. a collaborative effort working towards the same outcome.
Overall, I felt that the conference was a huge success, and I enjoyed it thoroughly. I enjoyed being with my friends from the YAP and I enjoyed presenting alongside them. I would thank the College for allowing all of us the humbling opportunity to present at their annual conference and we hope that we get invited back next year.