Navigating the Journey of Becoming a Carer: Megan’s Story

With National Carers Week 2024 around the corner, Trauma Ambassador Megan shares with us her experience of becoming a young carer, and the impact this has had upon her.

‘Becoming a full-time carer at the tender age of 13 is not a typical path for most young individuals. Yet, for me, it became a defining aspect of my life’s journey as I stepped into the role of caring for my grandmother and her Chronic Obstructive Pulmonary Disease (COPD). This journey has not only shaped my personal narrative but also ignited a passion for advocating for improved support systems for carers, especially young carers, within our healthcare infrastructure.

My grandmother’s health decline marked the beginning of my caregiving journey. As her frequent hospital admissions became a norm, primarily due to life-threatening infections escalating into pneumonia, I found myself assuming the role of her primary caregiver. From providing 24-hour personal care to offering emotional support, my responsibilities encompassed a myriad of tasks aimed at ensuring her well-being. Managing her COPD demanded meticulous attention, including maintaining a healthy body mass index and administering medication diligently.

However, amidst the duties lay the stark reality of navigating the healthcare system, which often felt daunting and inadequate. The lack of clear communication from healthcare professionals, particularly during the diagnosis of the COPD, left us grappling with uncertainties about the future. The absence of discussions about the seriousness of her condition and the limited time we had together added to our distress.

One of the most shocking realizations during this journey was the discovery of a ‘do not resuscitate’ order in my grandmother’s medical records, a decision made without our knowledge or consent. This disregard for our family’s wishes underscored the need for better communication and involvement of caregivers in the decision-making process.

Amidst these challenges emerged my interest in respiratory medicine and advocacy for patient-centred care. Drawing from my personal experiences and involvement with healthcare services, I became a vocal advocate for amplifying patient voices and improving care experiences. Collaborating with organizations like the North East London NHS Foundation Trust (NELFT), I strived to bridge the gap between patients and healthcare providers, advocating for inclusivity and empathy in care delivery.

Recognizing the unique needs of young carers, I advocate for tailored interventions and support systems. Initiatives like the development of a carer’s passport aim to empower carers in balancing their caregiving responsibilities with work commitments, fostering a supportive work environment conducive to their well-being.

As I reflect on my journey as a carer, I am driven by a fervent desire to effect meaningful change within our healthcare system. Through advocacy, collaboration, and elevating minority voices, I aspire to create a healthcare landscape that is inclusive, empathetic, and responsive to the needs of all individuals, especially those in caregiving roles.

In conclusion, it is my fervent hope that by sharing my story and advocating for change, I can contribute to a future where caregivers are valued, supported, and empowered to provide the best possible care for their loved ones.

My top tips for better carer interactions:

  • Describe the workplace challenges with which you would like support
    What are these and how do they affect you at work? Sharing these with your manager can help them put the support in place.
  • Key considerations and flexibilities
    What would make things easier for you at work? What is already in place and working well and what isn’t? What would help you to balance your work and caring responsibilities?
  • Additional sources of support
    There are places you can go to for help and support: your organisation’s Carers’ Network, the Employee Assistance Programme, the Charity for Civil Servants and Employers for Carers.
  • Discuss with your manager what flexibilities you would like included for your carer.
    Have an honest conversation to determine what can be supported and agree solutions. Your manager should balance your needs with the needs of the business and existing departmental policy.
  • Complete your records
    This is your record of the adjustments and support measures you agreed with your manager. Both you and your manager should sign the passport.
  • Sharing your carer’s needs appropriately
    Sharing your carer’s passport at the right time will ensure your support needs are met if you move job or manager or your personal circumstances change. You should agree who it can be shared with and when.
  • Reviewing your carer’s needs
    Review your carer’s needs annually or when circumstances change. Having regular reviews will ensure your current support needs are being met.’

If you would like to access support or information around any of the issues mentioned in this blog, give the Healthwatch Essex Information & Guidance Service a call on 0300 500 1895, email [email protected] or text/WhatsApp on 07712 395398.