The meeting, planned by 45 teenage carers, comes three years into an NHS pledge to allocate £400 million2 to improve carer support by 2015. NHS England Chief Executive Simon Stevens and Norman Lamb MP, Minister of State for Care and Support, along with GPs and nursing staff, will hear young carers’ experiences of the NHS, and what can be done to improve it.
The idea for the event came from Russell Minns, a young carer who addressed a Commitment to Carers event last December and talked about the impact caring has had upon his life, and the role and responsibility he has taken on from a very young age. He explained that professionals working in the ‘system’ take little account of his knowledge and experience of the family members he cares for and of his own health and wellbeing needs. He said that the young carers’ agenda was set by meetings full of people ‘in suits’, and instead professionals should listen directly to what he, and young carers like him, have to say.
This sentiment was echoed by one 15-year old from Yorkshire who provides physical, practical and emotional support for her mother. She spoke of her relief that she would get the chance to speak to GPs, nurses and other healthcare staff. She says: “Doctors don’t realise that as a carer you are involved in your parent’s medication and health issues. I’ve been given pills for my mum and not told what they are for. It’s really difficult.”
There is also evidence that children who provide more than 50 hours of care a week are five times more likely than their peers to report poor physical or emotional health. Child and teenage carers – who can start caring as young as five – are also more at risk of missing out on schooling, socialising and other life chances in order to provide round the clock care for a loved one.
The meeting today, the first of its kind in the UK, will bring together decision-makers from the Royal College of General Practitioners, the Royal College of Nursing and NHS England, among others, to make a commitment to take action on young carer issues. The young carers are being supported by Carers Trust and The Children’s Society and the meeting has been co-ordinated with support from NHS Improving Quality.
Matthew Reed, head of The Children’s Society, said:
“The teenagers who have planned and organised this event are shining examples of our young carer champion project. Despite having school, caring and other life commitments, they have managed to get decision makers to listen to the very real challenges young carers face in the healthcare system in this country. I’m very hopeful that the meeting today will result in important changes so children and teenagers who care for a relative are recognised and supported by all health professionals they come into contact with.”
Dr Moira Fraser, interim chief executive of Carers Trust, said:
“There are more than 166,000 children caring for family members in England who need recognition in our health and care services. This event provides a great starting point where these young people have the platform to communicate their experiences and have their views heard by decision makers – from which we can all take action to support young carers.”
RCGP Chair, Dr Maureen Baker said:
“Around 6.5m people in the UK provide unpaid care to a family member or friend. They are a hidden healthcare army – and young carers play a significant part.
“We are delighted to be part of this event and give young carers the chance to set the agenda and initiate discussions about their caring experiences.
“Young carers hold valuable knowledge and information about the person they care for and should be included in discussions about that person’s health and wellbeing.
“As health professionals we need to listen to these inspirational young people and together with other partners, take into account the support, guidance, and resources that they say themselves, they would benefit from most.”
Steve Fairman, interim managing director of NHS Improving Quality, said:
“I am privileged that NHS Improving Quality has been able to support these young carers in arranging this summit meeting. Our health and care services must be designed with patients and carers at their heart, and they can only be effective if we have an understanding of what patients and carers need.
“For young carers in particular, the people who make policy decisions and design healthcare services must feel very far-removed from their everyday lives. This is an exciting opportunity for young people to share their experiences and expertise, and help healthcare leaders gain a real feel for what it’s like to care for someone as a child or teenager.”