Caring for young carers: How are things

The, Chief Nursing Officer for England, reflects on young carers and the challenges they face.

I recently had the privilege of attending and speaking at an event with carers.

As part of my speech I pledged that: ‘I, Jane Cummings, Chief Nursing Officer for England, pledge to work with young carers Hannah and Ambeya to write a blog raising awareness of young carers, encouraging staff to consider young carer’s mental as well as physical health, so that signposting to additional support can happen more consistently across the NHS….’

And here it is:

It’s hard to believe we have approximately 700,000 young carers across the country.

At the carers event it really made me reflect on my role as a carer when my late husband Chris was terminally ill. It also made me think back to when I was working in the Emergency Department. Did I consider the children of the adults who came in due to complex long term conditions or those with mental health conditions? Could I have done more or thought differently? Could I have asked questions to the child or young person who often accompanied these adults: ‘How is it for you’ or ‘what help do you need’?

Thanks to the support of the Foyer Federation, we’ve had Hannah and Ambeya, two amazing young people who have been working with us at NHS England. Hannah and Ambeya have been challenging us and helping to ensure we think about ‘young carers’.

They have kindly written and shared with us their stories and reflections. It certainly made me think.

Ambeya shares ….

I have not had, what many would describe as, a ‘normal’ life. Night after night I lay awake and wonder if I could be a part of your world. I can smile like you can, I can act like you can, I can laugh like you can. But the truth is, mine are all fake. The difficulties I have faced during my life have fully made it challenging for me to achieve my best and by being as honest as possible, I believe that highlighting the challenges that I have faced could help you further understand the ability and drive young people and carers have.

Being a carer for a mum who is both schizophrenic and bipolar means I have to be my own mother, own sister and own family. Her inability to recognise dreams from reality and her constant personality splits make her incapable of looking after us. I am left with no choice but to take over the parent role and keep everyone safe; tolerating verbal abuse and extreme aggressive behaviour.

It hurts to know that I have never had a relationship with her. Watching over her every move, means I am always living on the edge. This is what I call my ‘normal’ life.

Looking back, I realise I have been able to get through life without the necessary help I needed. However, there is a BUT. Not everyone has been able to be as mentally strong as I have learnt to be.

Every month, I meet kids from the age of three who are forced to care for mentally ill parents. They become fully equipped with the tools needed to be responsible young carers. But they don’t deserve that. They don’t deserve to class being a young carer as what could be a part time or full time job. They don’t deserve to be belittled by society. The lack of attention to how children are affected by parental mental illness and the emotional and behavioural impacts this has, is still unheard.

Along with me, there are others out there who would like to be given the voice to create a change. There are others out there who would like to raise concerns to those who make decisions about NHS policy, with regards to the lack of attention towards young people.

Getting decision makers to make pledges on how they will help young carers and having their promises take effect gives me hope so that I can fulfil my role advising NHS England on young carers.  

Hannah shares ….

When people think about being healthy they typically think of a person’s physical health. That is, are their bones and muscles healthy, are they physically fit? And while being physically healthy is always a good thing, so is being mentally healthy. I read somewhere a long time ago that one in 10 people suffer with some form of mental illness. That is so many more people than I imagined it being. But being a young person who suffers with a mental illness, I now know how important it is to be wholly healthy. I was diagnosed with depression and anxiety last year; however it is very clear to me and my family that I suffered with it long before I was diagnosed.

Because I care for my Mum and help a lot of people, I like to believe I am superwoman but unfortunately that is not the case. I felt that I could never show how I really felt, so I hid my negative emotions and depression behind a wall covered in a smile. I thought that I had to be strong and reliable for everyone in my life and that I couldn’t let them see the messed up person inside. But eventually I had bottled up enough that the wall broke, and all I had locked away came out in one big breakdown which unfortunately ended in a suicide attempt. Now that I have overcome the barriers of my illness, when looking back I now see that when I was down in myself all the time I tended to get sick more frequently, or would not heal as quickly. And the further I pushed myself the harder I would crash when everything was done.

Since then I have now learnt that I can’t keep everything to myself. As the old adage goes, a problem shared is a problem halved. Now that I have my mental health under control my physical health is better than ever, I don’t get sick often, maybe just the sniffles, I am less tired, and my stamina is increased. I have also begun to notice when my mood is dipping and I now know helpful ways to manage it.

If I had one thing to leave you with, it is that you should take care of your whole self. Both body and mind must be healthy for you to achieve your full potential. When staff in the NHS take a moment to ask ‘How are you?’ it is really appreciated…

The Carers Trust has developed a wonderful range of resources, sharing more information about young carers, which is worth a look, as has the Children’s Society. You can also read more about NHS England’s Commitment to Carers.

So my call to you, as you care for adults in primary care, in mental health units, on inpatient units, outpatient areas, A&E, in fact anywhere across the health care system, is will you think young carers?

A question to them such as ‘How are things?’ may just make that difference to a child or young person so that you can signpost them to the appropriate support they may really value and need, and the Carers Trust is a great place to start!

Jane Cummings

Professor Jane Cummings is the Chief Nursing Officer for England and Executive Director at NHS England.

Jane specialised in emergency care and has held a wide variety of roles across the NHS including Director of Commissioning, Director of Nursing and Deputy Chief Executive.

In February 2004, she became the national lead for emergency care agreeing and implementing the 98% operational standard. She has also worked as the nursing advisor for emergency care. In January 2005, she was appointed as the National Implementation Director for ‘Choice’ and ‘Choose and Book’.

Jane moved to NHS North West in November 2007 where she held executive responsibility for the professional leadership of nursing, quality, performance as well as QIPP, commissioning and for a time Deputy Chief Executive Officer. In October 2011, she was appointed to the role of Chief Nurse for the North of England SHA Cluster.

She was appointed as Chief Nursing Officer for England in March 2012 and started full time in June 2012. Jane is the professional lead for all nurses and midwives in England (with the exception of public health) and published the ‘6Cs’ and ‘Compassion in Practice’ in December 2012, followed by publishing the ‘Leading Change, Adding Value’ framework in May 2016.

Jane has executive oversight of maternity, patient experience, learning disability and, in January 2016, became executive lead for Patient and Public Participation.

She was awarded Doctorates by Edge Hill University and by Bucks New University, and she is a visiting professor at Kingston University and St George’s University, London.

She is also Director and trustee for Macmillan Cancer Support and a clinical Ambassador for the Over the Wall Children’s Charity where she volunteers as a nurse providing care for children affected by serious illnesses.

Follow Jane on Twitter: @JaneMCummings.

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  1. Alejandra says:

    This is an incredible courageous and inspiring sharing. Thanks Ambeya and Hannah for giving us a lesson about the great importance of caring for others, especially when they are young people having to take very difficult and emotionally charged responsibilities, without having a chance not to do it. Lots to learn and change.