All posts by Aneela Ahmed

Aneela Ahmed

About Aneela Ahmed

Aneela started advocating for patient rights and youth leadership at the age of twelve. Working in partnership with the Department of Health, as a young representative at the National Children’s Bureau Board of Trustee’s, the British Youth Council and as a ‘Youth Development consultant’. In 2013, she participated in the Empathy seminar at EPF, and was nominated by National Voices to join the Youth Group where she was elected Treasurer. She continues to work with her patient organisation - Diabetes UK to champion the empowerment of young patients and tackling social stigma. 

EPF Youth Group Brings Useful Insights to Child Care Models

Uncategorized

The Models of Child Care Appraised (MOCHA) project held its General Assembly meeting in Rome on the 20 October 2016. The EPF Youth Group Chair, Aneela Ahmed tells us about her experience as a participant.

 

The MOCHA project meeting and General Assembly turned out to be a very interesting experience. In the backdrop of the scenic and historic roman ruins proved to be a fitting setting for the first General Assembly. The current research is broken down into work packages that help to organise and categorise the research for an easier dissemination into different languages. The General Assembly helped to humanise the researchers for stakeholders allowing engagement of country agents, stakeholders and External Advisory Board (EAB) Members which included the voice of young patients through a designated member of the EPF Youth Group.

Many issues were raised by the youth delegate concerning issues surrounding transition, the current chart and what is included as essential factors relating to child health, the current primary health system and how it may or may not fit the needs of children across Europe. We welcomed colleagues from Australia and America to help advise on specialist issues related to public health whilst continuing the dialogue between existing EAB members on how we could contribute towards promotion and finding connections for research.

It was particularly insightful to hear the recommendations from colleagues who were well versed and informed through the research and knowledge they had through their organisation however, it must be noted that it was imperative for YG member presence. Simply, due to the insight and issues that could go amiss when discussing primary health care for children and young people when direct consultations cannot be implemented.  It was a successful meeting and the future of this project for both the MOCHA team and our young patients looks a little brighter because of it.

 

Patient Empowerment from the perspective of a young person

Featured

I am 16: an age to be young and find your first breath of freedom. This is also 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 looked on.

It’s not the illness that is tiring. Chronic illnesses are invisible but their management is less so. The doctors and nurses always spoke to my parents but they did also take time to talk to me. Although I had the support I needed it was extremely difficult to become an empowered patient.

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 begin to factor in other patients lives and needs.

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 society’s eyes that you know is enormous. 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.

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.

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 need to think like a politician or a lawyer; you will need an answer for every question.  Be persistent. Be determined. Be, if necessary, a nuisance because only perseverance will secure success.