THE BLOG
30/10/2013 09:28 GMT | Updated 29/12/2013 05:12 GMT

Be a Change Maker

You may not realise it, but as you go about your daily life the things you regularly experience are likely to make you an expert in them by virtue of that experience. I say you may not realise it simply because traditionally the 'lived experience' hasn't been considered as valuable as the 'learnt experience'. This despite the fact that the 'University of Life' is the one we all graduate from, regardless of our background or the opportunities that come our way, and 'common sense' is a quality often demanded but scarcely seen.

In the fields of health and social care, those with academic qualifications and professional standing have always controlled the policy agenda that, ultimately, affects all of us when we come into contact with these vital, sometimes life-saving services. Yet many of these highly skilled individuals have never actually been on the receiving end of care, or indeed had to advocate and care for a loved one, leaving a gap in their knowledge that no amount of textbooks can fill.

Attending two very contrasting events recently - in Westminster and in Brent - the overwhelming message that came out of both of them was one of hard-hitting simplicity: listen to the people who experience health and social care services. Be guided by patients, carers and families, the people who know exactly what works and what doesn't in our hospitals, primary care services, care homes and domiciliary care services.

The idea of patients as activists isn't new, but it is finding increasing resonance. In my view we don't have enough patient leaders in positions of influence, but as confidence in speaking out grows I'm certain that will change. For many people advocating for themselves, never mind others, is challenging enough, but for those who can summon up the resources and strength, their insights are invaluable and should be used to transform policy and drive implementation.

The Care Quality Commission already value the contribution of 'Experts by Experience' and are intending to recruit more of them as CQC change the way they regulate services. The National Institute for Health and Care Excellence (NICE) also incorporate the views of those who have experienced health and social care into their work. We've seen the introduction of the 'Friends and Family' test in the NHS, while online feedback forums for care services are growing in popularity.

The role of 'Experts by Experience' is often considered to be all about naming and shaming poorly performing services, breeding a huge amount of hostility towards these experts from some professionals. I would argue, however, that whilst whistleblowing is undoubtedly vital in the race to clean up health and social care following the scandals of Mid Staffs, Morecambe Bay, Winterbourne View and others, 'Experts by Experience' are just as likely to offer praise and should be given every opportunity to highlight that which represents a great experience too.

Another significant barrier to being more inclusive comes from the lack of capacity in the system, with NICE Deputy Chief Executive and Health and Social Care Director, Professor Gillian Leng admitting at the recent Westminster Social Policy Forum that they are hugely over-subscribed with would-be 'Experts by Experience' who are interested in working with them.

It's almost as if the desire for user-led involvement in improving health and social care has caught some organisations by surprise. Maybe they suspected apathy amongst a population weighed down by the demands of daily life. Yet for many people, health and social care services form the backdrop to daily life. We have hospitals virtually overflowing with people. GP practices whose patients may wait days for an appointment. Well-regarded care homes with waiting lists. And perhaps most tellingly of all, 6.5 million family carers in the UK. Ask any of them about their experiences of health and social care and you will more than likely get an appraisal that, if acted upon, would make accessing and experiencing health and social care infinitely better for us all.

How do we harness this revolutionary resource? Simply listen and learn. Make the lived experience a vital component of every policy that is made. Ensure every conference has a person with lived experience contributing to it. Bring 'Experts by Experience' into educational roles. Don't pay lip-service, but instead value wisdom often gained in the most painful circumstances. Let the people who are experiencing, or have experienced, health and social care be the change makers for this vital area of all our lives. Together we can make a difference.