Tuesday, 1 November 2011

Is it worth being involved in nurse education?

One of the most rewarding roles I have been done since I began to speak about my experiences of being a patient (I personally dislike the term 'service user') has been to talk to students, especially nurses. I would encourage others to do so - let me explain ..

Little girl me as a nurse!
During the last year I have been honoured to be a patient representative for the Open University on their Nursing Programme Committee. On 12th October I was at the impressive OU at Milton Keynes for a full day workshop. Much of the meeting is concerned with curriculum content. I was asked if for this meeting I would share my experiences and answer the question 'why service user involvement is important'.

I began by asking who of all the professionals in the room had ever been a patient or involved with a loved-one who had needed nursing - every hand went up in the room! Hence, any of us could be asked what we have thought of our care and how it could be improved. Yet why are most of us so reluctant to comment? Is it fear of retribution if we asked for things to be done differently? Is it because when we leave the care we just heave a sigh of relief and decide it's not worth the bother? Yet unless we say what was good and could be improved nothing will change. We are quick to complain about other services and be involved, so why not the health care system?

My first aspect was to explain how I had become involved as an 'in patient' over the years. At first glance it reads like a hypochondriacs list!
  • Viral meningitis and pneumonia at 10 years old
  • Expectant Mum
  • Postnatally depressed Mum
  • Digestive investigations 
  • Hysterectomy
  • Shoulder surgery
Also I was involved in the cancer care for my Grandpa and Alzheimer's for my Grandma; knee surgery with my late partner Clive Gott then dealing with his sudden death at home in February. In my previous career as a teacher for children with severe and profound learning difficulties the role between health and education was often very blurred.

My book 'Eyes without Sparkle - a journey through postnatal illness' (2005, Radcliffe), launched my speaking career and I began to learn more about the subject and was invited to speak at many events. One of the first events I spoke at one of the delegates, Ann Mitchell, was involved in the Open University and that meeting lead to my current involvement. What did I write in the previous post about people popping up again? 

I have been keen to share my experiences with health professional students for several reasons:-
  1. to express gratitude, as without them people like me would not get better
  2. to inspire them to make a positive difference 
  3. to offer constructive feedback
By sharing my stories and anecdotes I encourage them to
  • see the 'bigger picture' of a patients' life
  • see the impact of their actions
  • that small kindnesses can make a huge difference
  • that they can make a real difference
  • think, act and behave differently and more effectively
  • remember the importance of themselves too
If you have been a health professional who has heard me speak, would you say I achieved these?

I believe that patients should be involved in the development of the nursing education programme because the 'professionals' can become immersed in targets, figures, outcomes and statistics. As patients we can remind them that real lives, real feelings and real impact are affected as a result. All other services involve their customers in feedback so why not nursing and health care?

I was also asked to outline my personal impact from being involved in the past years as a speaker, writer and campaigner for health. I share this list, not to gloat, but to encourage others to share their experiences. 
  • Individuals - I am told that my story has convinced some not to take their own lives but to seek that hope and 'light at the end of the tunnel'; it has encouraged some to train in the health professions; it has improved individual practice in how professionals communicate and deal with patients.
  • Universities - through my talks to students individuals have been inspired to set up groups, e.g. No Secrets; course content has been modified; I have been a critical reader for Open University courses.
  • Conferences - e.g. Patient Safety in Colchester  - see the comments on my impact
  • My blog - now over 56,000 views! Who knows the impact from sharing - even it annoys some people it gets a reaction!
  • Children's centres and postnatal work - through the workshops my colleague Ann and I run we are aware of an increasing positive impact on the lives of many. 
  • Media, education and politics - I have many messages saying how my stories have made a positive difference
  • Charity work - I feel that all of my journey has 'come together' through my role as trustee for the Joanne (Joe) Bingley Memorial Foundation. 
Whilst I was speaking at the Open University my thoughts were with Chris and family and friends as it was Joe's inquest. 

We often don't know where events in life will take us or who we meet.

I wish I had been able to speak more and spread awareness about postnatal illness and how serious it can be. Through the charity I hope to be part of an incredibly effective team of patients and loved ones who can work together to improve services.

The Open University would love more people to be involved with their nursing programmes design and development. Please email me at elaine@hanzak.com if you would like details.

Who knows what a difference we can make together?

Elaine x


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