Consider Health Literacy for Young Carers

Imagine being a carer, sat in consultation with the person you care for and their healthcare professional, and being left out of the discussion. You don't understand what's being said and no one will explain it to you; and although you have information which could help, no-one asks for you opinion. Now imagine that you are a young carer, aged 15 years old.

Young carers are not always included as part of the dialogue with healthcare professionals, despite being a valuable source of information about the person they care for, and their caring role is often unrecognised. When young carers are included in conversations about the people they care for they may not have the necessary levels of health literacy to understand what is being said, thus hindering their ability to care for their relative or loved one in the appropriate way.

The RCGP Supporting Carers in General Practice programme strives to include young carers and young adult carers in the dialogue about the challenges they face. One of our 11 GP Champions for Carers is dedicated in having a special interest in young carers and we are working with NHS England, NHS Improving Quality, Carers Trust and the Children's Society to hear from young carers what they need.

The following testimony is from Dana, a young carer caring for her mother, who has faced obstacles in her communications with healthcare professionals.

A Young Carer's Experience with Medical Professionals

I would like to introduce myself as Dana, who is 15 years old and a young carer. I have been caring for my Mum for about five years now, following an accident that left her disabled. During these five years I have been to quite a few of my Mum's appointments with medical professionals and during these consultations I have faced lots of challenges, obstacles and at times have been made to feel invisible.

I would like to take this opportunity to outline some of the challenges and difficulties I have faced in the hope that future medical staff take notice of young carers:

  • At nearly every appointment the medical professional introduces themselves to my Mum, my Dad or my Mum's support worker but just ignores me as though I am just a little kid and that I am irrelevant. They also never ask me if I have any questions despite asking the other people in the room if they do as though I don't understand anything. As a young carer, we may not understand the technical medical explanations, just like any other patient / patient representative would not; but we do have valid concerns. If we do ask a question or ask for further explanation they talk down to us assuming we don't know what is going on but we do as we are the ones that are there every day, helping them through their illnesses and disabilities.
  • At times when my Mum has suddenly taken ill, I have been unable to make an appointment / pick up an emergency or even a routine prescription, as they always ask to speak to a / for an adult which isn't possible as young carers are often the only one caring for their family member.
  • Another occasion that sticks in my mind was during one of my Mum's severe depressive states where I needed to phone the mental health crisis team and they told me that they could not help as she was no longer in their system. This is despite them visiting us in our home a matter of weeks before and leaving contact details in case we needed them. This left me feeling scared and vulnerable as well as not knowing where / who to turn to for help as my dad was unavailable.
  • At one point when I was trying to describe / explain my Mum's attack, which were eventually diagnosed as non-epileptic seizure disorder attacks, to various medical personnel as she had no recollection of what happened during these attacks as sometimes I was the only one that had witnessed the attack, they wouldn't listen to what I was saying. Therefore they did not diagnose the attacks correctly for a long time resulting in my Dad and I suffering the effects and witnessing my Mum in distress when my information may have helped with a correct diagnosis sooner and may have prevented more of these attacks due to her receiving the correct treatment quicker.
  • Despite having many reviews of my Mum's care requirements from Social Services and how caring for my Mum affects my Dad as a carer at no point have I been asked how caring affects me other than from my young carers project. I feel that Social Workers should also involve young carers in the assessments.

Whilst I appreciate everything they do for my family, my experiences as outlined above show that there should be better training / understanding by the medical professionals that young carers are important and should not be disregarded. Also, they should take our information in to account and introduce themselves to young carers instead of treating us as if we are invisible. They should take time out to explain to us what is happening with the person we care for.

Learn more

The Children's Society

The Children's Society has helped change children's stories for over a century. We expose injustice and address hard truths, tackling child poverty and neglect head-on. We fight for change based on the experiences of every child we work with and the solid evidence we gather. Through our campaigning, commitment and care, we are determined to give every child in this country the greatest possible chance in life.

One of the many programmes The Children's Society run is the Include programme. They work with voluntary and statutory services across the country to support young carers. They campaign for change and promote best practice with central and local government.

Dana is a Young Carers in Focus Champion (YCiF). YCiF is part of the Include programme and is funded by the Big Lottery Fund. YCiF is an exciting four-year programme giving young carers a chance to communicate, share their stories and advocate for things that matter most to them. YCiF is being delivered by The Children's Society, Stards National Initiative, DigitalME, YMCA Fairthrone Group, Rethink Mental Illness and The Fatherhood Institute.

Visit the Supporting Carers in General Practice webpage here, and to learn more about health literacy click here.

This is the final article in a four-part series focusing on health literacy in general practice. Click here to view the three other articles.

References

Key facts about carers, Carer Trust. Visit their site here.

The Children's Society, click here to find a wealth of information and resources for young carers, families and professionals.

Young Carers in Focus, visit this safe, social network for information about 'Young Carers in Focus' and learn how the voices of young carers are being listened to across the country.

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