NHS England recently published a healthy caring guide aimed at providing practical advice and information to carers. Here, one long-term carer, explains why it is so vital:
I have been a carer for 28 years – 25 of them full-time.
My wife has multiple long-term conditions, all of which need my help. Full-time means 168 hours a week, 52 weeks a year and no paid holidays, but with occasional sleep breaks. Not, as some would say, over 30 hours or over 50 hours.
From the outset I have needed to learn skills that were totally alien to any previous experiences or thinking up to that point in my life. It took 12 years for me to become recognised as a carer and before any help and support came my way.
This was a desperate and lonely place to be, I had depression, many friends disappeared into the sunset because the social life we had enjoyed to that point was no more. However, once support was in place, my life as a carer took on a whole new dimension. I had the chance to become an individual again, regain some self-worth, helping me immensely as a carer and therefore improving considerably my wife’s care, my health and our self esteem.
So what could have made life better?
Had those it is reasonable to expect could have offered me guidance such as GPs, medical professionals, DHSS, local authorities etc, had guidelines to assist them to signpost such people as myself to the correct support services, where both my wife and I could have been assessed and linked in to the appropriate support, life as it then was, would have been so much more bearable. It would have provided me with clearer information and even better training in order to perform my caring duties using improved skills.
Now at last, for anyone who is just beginning a caring role, or who hasn’t yet recognised themselves as a carer, this publication, ‘A Practical Guide To Healthy Caring‘, has been produced to help you identify this and the situation you are likely to face. It gives you all the latest information and contact details, wherever you live in the UK, so you can be advised where to go to access the support you will almost certainly need at some point.
The information is easy to read and explains clearly who a carer is, what challenges there are likely to be, the pressures on your own health and how to look after yourself. It takes you on a journey that will see you supported right through to end of life care and beyond.
Great care and understanding by its compilers is very evident. It is clear to see that those with ‘lived in’ experience have been consulted in order to co-produce such an outstanding guide.
Anyone who does not naturally recognise themselves as a carer will certainly be more likely to if they take the short time needed to read this.
I am particularly impressed by the ‘step by step’ approach that has been achieved with such diligence. The gentle persuasion used to encourage a carer to take up the option and get the correct support they will undoubtedly need at some point in their caring role.
Many who are not carers do not realise the impact this totally exhaustive and often thankless role has on one’s life. When undertaking the role of a carer, the lives of both you and the person for whom you are caring will change drastically and dramatically, perhaps forever. You will lose the freedom to do what you like, when you want. As a carer you start to live two lives out of one body, so your own health and ability naturally deteriorates much faster. You are suddenly faced with the realisation of having to make significant decisions about another person’s health and well being, that their quality of life is in your hands, and one mistake can have far reaching consequences.
But with the right support and guidance, many of the challenges facing you can either be overcome or better supported to enable you to manage better. When this happens you are then able to cope much better for much longer, bringing some individuality and meaning back to your life.
Using my years of caring experience and thinking of the difficult and often soul destroying and unnecessary obstacles that have presented themselves to me, I can clearly and unequivocally state that if had I been afforded the opportunity to have a guide such as this all those years ago, advising me of the basic ‘ first steps’ in the role I was about to undertake, the life of my wife, her self-esteem and perhaps even certain aspects of her health would have been much improved.
So, too, would my understanding of what may lie ahead with regards to practical support, sound advice and my own health and wellbeing. I would have been better prepared and more capable of meeting the day to day needs and challenges.
For me, though long overdue, this is what I would hope to see as the dawning of realisation, that unpaid family carers are the key to the continued and lasting success of professional health services as we know them.
I am proud to endorse this booklet. If this is your introduction to it, please, however busy you are, take the time to read it. This is a decision you won’t regret and the advice it contains could make a world of difference to your life as a carer, as well as that of the person for whom you care.
- Read more about the Healthy Caring Guide in a blog by Emily Holzhausen.
Richard Cross, 71, spent his working life as an auditor. His wife Sheila has multiple Long-Term Conditions, including COPD, spinal and related arthritic conditions, severe abdominal pains and mental health issues.
He holds many voluntary roles including:
- Member and inaugural chairman of the Cambridgeshire Carers Partnership Board
- Carers ambassador for the Carers Trust Cambridgeshire working on their carers awareness training programme
- Carers Ambassador for Carers UK for the East of England where he has spent almost two years as one of Essex County Council’s advisors on the implementation of their carers strategy
- Member of the East of England Citizens Senate where he is on the home oxygen services board
- Member of the Coalition for Collaborative Care
- Expert by experience for NHS England on long-term conditions, older people and end-of-life care
On behalf of carers nationwide, he has met David Cameron at 10 Downing Street, had several visits to Westminster to meet other MPs, a carers meeting at The Foreign Office (for their staff) and many local meetings with influential representatives of both government departments and regulatory bodies.