This week changemaker Karen speaks with Laura Szutowicz CEO of HAE UK, about living with the HAE, self-management skills and the I am number 17 campaign.
Hereditary angioedema (HAE) is a rare genetic condition that causes swelling under the skin. A certain protein in your body is not in balance. This causes tiny blood vessels to push fluid into nearby areas, which leads to sudden swelling.
Below you will find the podcast episode, as well as a blog Karen has written depicting her experience as a changemaker. You can read her full experience here.
This podcast was recorded remotely. All experiences of HAE described within the podcast are based on Karen’s experiences only and the experiences of others may differ.
To learn more about HAE UK please go to https://www.haeuk.org/.
Why I’m so passionate about being a Changemaker with #IAmNumber17
I was absolutely delighted when I was approached by HAE UK to represent Hereditary Angioedema patients by becoming a #Changemaker in Takeda’s #IAmNumber17 campaign back in 2019. After the amazing launch event and media attention back in early 2020 it was unfortunate that the COVID pandemic prohibited the display of the portraits further but, instead each Changemaker has been able to create a new piece of content, rolled out across 17 weeks.
I believe very passionately that public and patient involvement should be embedded in every aspect of health and social care. This can be achieved through;
informed and supported involvement in managing their own wellbeing.
providing and gaining appropriate peer support networks
collaborating in the various aspects of health & care nationally, regionally or locally in a variety of ways, to suit both the individual and the various health & care organisations.
In getting to know the other Changemakers over the last year I have gained another peer network, who support and motivate me to stay on top of my game by reviewing and managing my own health.
So, I’m excited this second phase of the multi award winning #IAmNumber17 campaign is giving us the opportunity to share our stories to a wider audience. I hope that someone reading this might also be inspired to improve their own self-management, to take steps towards improving their support systems or to get involved in raising awareness or improving health care in some way.
During the pandemic many people are getting a taste of what are often frequent, even daily, experiences for those of us living with health issues,
plans that must change, adapt, be postponed or cancelled.
isolation and loneliness of not being able to physically connect with others.
frustration at not being able to do things you want to.
Myself and many people living with rare conditions have noticed a significant improvement in our life experiences and increasing acceptance of the benefits of online connection from the medical profession, which has really helped to underpin the biopsychosocial model of self-management socially, medically and emotionally. However, reaping those rewards is only possible for those of us who have the resources, skills and confidence to engage in digital technology.
We ensure our researchers, scientists, clinicians and those involved in running our Health and Care systems have the training and tools to do their jobs to the best of their ability, but no one is taught to be an expert patient!
As a result, a person’s ability to effectively manage their health and wellbeing often depends on their social determinants (upbringing, education, culture etc) and whether they have the capacity to understand and accept their personal responsibility. Sadly, for people living with health issues this often means they are increasingly disadvantaged, especially those with rare conditions. This is something that needs to be understood and addressed by everyone involved in the Health and Care arena and why I believe the #IamNumber 17 campaign is so vital!
Through the HealthMaker programme that I founded back in 2013 I continue to do my part to encourage everyone to live their best life, I try looking after my health to the best of my ability so I can also ‘walk the walk’ via any opportunities that present themselves for raising awareness of my condition and the challenges that living with a rare condition pose for us in our work, social life, family, general healthcare, daily living etc. However, on a note of caution, even positive involvement experiences add additional pressures in managing our health. There is a fine line between doing enough and giving too much of yourself, which can test the skills of even the best self-managers.
It’s a sad fact that the fatigue felt by many living with health issues can also impair the judgement of how much can safely be taken on without impacting our wellbeing. The joy of this campaign is the peer support received from the other 16 changemakers. This adds to the motivation to be at our best, which means being honest with yourself about what can be achieved and accepting that only aiming for perfection is not healthy, it’s fine to accept good enough as you go through your own journey to optimal self-management.
There are four steps to achieving competence in any form of learning, it’s no different for the acceptance of living with health challenges and learning to self-manage. In psychology, these are known as the four stages of competence¹, or the “conscious competence” learning model, which relates to the psychological states involved in the process of progressing from incompetence to competence in any skill:
Step 1 – Unconscious Incompetence
Here you are starting out with little or no role to play in managing your health.
Step 2 – Conscious Incompetence
You begin shaping your journey and realising the importance of taking control but not necessarily having the skills to do so.
Step 3 – Conscious Competence
You are on your way, with the confidence and basic foundations to self-manage.
Step 4 – Unconscious Competence
You have reached optimal self-management, applying skills and learning without conscious thought.
If each person’s journey through these steps is encouraged and supported they have the best chance to reach optimal self-management and achieve their best quality of life.
The support is vital to keep on track. It helps build confidence and self-esteem and helps create a positive mindset. Initially the support needs to be embedded in the commissioned clinical pathways and reinforced by the clinicians and allied health professionals. They should do this through effective consultations which result in collaborative planning to create daily self-care plans, setback plans and emergency plans. Also, to include how and when to medicate, advice on food, rest, exercise and sleep etc. The individual then has a solid framework from which to self-manage, which can be maintained with the support from our friends, families and especially their peers.
So why is peer support so important? The average person will have potentially limited face-to-face professional/ clinical support for their health and wellbeing. A good support network, which includes appropriate levels of peer support is a vital part of any self-management tool kit that alongside effective self-care plans will enable you to manage daily life, setbacks and emergencies. This really does help maintain the best possible quality of live which is so important if you have health issues, especially with rare conditions. All these elements and a positive mindset help to stop you “suffering from” and help you to accept your condition and the limitations it may bring and move you towards “living with” your health issues.
Some people are natural extroverts and will actively seek out support, others may need encouragement from their clinicians or families to do so.
It’s important to consider what is right for the individual and to try and get a balance through joining or creating medical, social or emotional support groups that encourage self-reliance.
They might be condition specific for mental or physical health or could be more general networks within families, friends, colleagues, sports groups, specialist groups, possibly based on hobbies and interests. It’s important they are constructive experiences and are facilitated to ensure they don’t support negative behaviour. Many groups have been set up with the best intentions then focus on the negative issues which can in turn increase anxiety and dependency. They can be face to face groups, or via websites and social media. Some support through befriending services via phone, video calls, texts, e mails and newsletters, especially now that social distancing has made face to face contact more difficult.
What my own experience has taught me is that once you reach the unconscious competence stage, you often find that changes in your condition and other external factors can knock you back. It is important to include a process of continuous review of your self-management plans, so you can adapt them to keep you on track. An excellent way to do this is through fully engaging with your support networks as you gain additional benefits to your own health through the personal rewards you receive by supporting others.
Everyone regardless of their position in life should be afforded the support and training to live their best life.
Therefore, I want the messages of all 17 changemakers to reach the widest possible audience. I hope our stories encourage EVERYONE to consider their role in making this happen, and by that I mean:
those affected by a rare condition
all clinical, care staff and key workers
all commissioners and providers of public services
all commercial and third sector organisation’s involved in health and care
By everyone working in equal partnership with us and listening to our experiences in receiving care, negotiating our way through services, our expertise of living with our conditions we would enable a more effective, patient centred approach and give everyone the best chance of living well whatever their condition.
The experiences described in this blog are based on a single person’s experience and perspective of living with their condition, described in their own words. Not all people living with conditions will experience the same symptoms. It should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. Please also visit the HAE UK for more information.
1. Cannon et al. 2009. Managing Complexity: Applying the Conscious-Competence Model to Experiential Learning. Accessed March 2021