Blog

01/10/20

01 October 2020

World Patient Safety Day – reflections 2 weeks on

Do you know about the Royal College of Physicians’ Patient and Carer Network (PCN)?

The PCN is a group of patients and carers from across the UK who work closely with the RCP. This collaboration works to support, influence and improve patient care in the NHS.

Tell us a bit about yourself.

Ken: I am originally from Scotland, however I moved to the London borough of Bromley in 2013. I have type 2 diabetes and have been married to insulin since 1999.

My day job is as a psychotherapist and hypnotherapist. I am a diabetes advocate and patient champion at the London Diabetes Clinical Network. I am also a patient representative for my local clinical commissioning group (CCG).

I also organise two support groups for people with diabetes, one for Diabetes UK and the other which I started originally for people with type 2 diabetes but now includes all people with diabetes. I’m quite busy!

Angela: I’m originally from Liverpool and I now live in Carnforth, Lancashire, with my husband Paul. As an obesity patient advocate, I have been a PCN member since 2018.

I volunteer with a number of organisations to share my 40 years lived experience as a person living with obesity. My hope is to change the prospective of the complex, multifactorial, relapsing disease of obesity.

I also advocate for bariatric surgery as a cost-effective treatment for both the NHS and the patient. Maintaining a 10-stone weight loss thanks to my gastric bypass, I am passionate about helping others achieve a happy and healthy life like I have.

Why did you decide to become a member of the PCN?

Ken: I decided to become a member as I hope that I can make a difference for people who live with chronic diseases. Especially people with diabetes and heart problems.

Angela: I believe it’s important for the patient’s voice to be heard, so to be invited to join the Royal College of Physicians’ Patient and Carer Network was an opportunity to be heard by medical professionals who can really make a difference to a patient’s life.

Why do you think it’s important to have a close-knit relationship between patients, carers and healthcare organisations/structures?

Ken: I think that it is important because healthcare providers, although they know about the disease, do not understand it from a patient’s point of view.

For example, in diabetes, people with type 2 are all assumed to have been lazy and eat all the wrong food. However, that may be the only food that they can afford. The diet is usually based on a western diet; this might not be what the person is used to. Also, they might not be able to do exercise because of other problems. 

There are many reasons why people develop the disease and not everyone who develops it is obese. That’s why it is so important to include patients in the healthcare consultation process to avoid generalisations. 

Angela: I believe the only way to effect change is to have an understanding of the challenges we all face. Our common goal is for people to live a healthy life. This is more achievable by working and learning together.

Recently you both attended the Global Patients Congress hosted by the International Alliance of Patients’ Organizations (IAOP) which coincided with World Patient Safety Day. Can you tell us about your involvement and the key takeaways?

Ken: I was recently asked by Novo Nordisk to take part in a panel discussion at the IAOP conference, which was virtual. My part on the panel was talking about my involvement in a European project (funded by the Innovative Medicines Initiative) on hypoglycaemia called Hypo-RESOLVE. This is a database of research on various projects on the causes and interpretations of hypoglycaemia. This database will be available to researchers, clinicians and the public.

Angela: As a patient advocate observing the 9th Global Patients Congress my top three takeaway messages were:

  • No matter what the disease, illness or condition, the global need for the patient’s lived experience to be heard is extremely important in the development of future care.
  • There needs to be solidarity across all sectors to achieve better health for the world population.
  • No matter what our role in society, we are all humans and unfortunately at any point in time we could become a patient. We all need to take responsibility in keeping each other safe while treating each other with dignity and respect.

Every day is a day to advocate on behalf of patients. Find out more about the work of the PCN and information on how to join.