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This year I’m attending EXPO 2015 as a member of the People’s Panel which is a group of people who are patients or carers and who have lived experience in learning to deal with their own Long Term Conditions or as a carer, and who have also become expert in navigating the sometimes complex world of health and social care.
The fact that the planning for EXPO has included patients and carers is demonstrating the drive and commitment of NHS England and the Five Year Forward View to develop “..a more engaged relationship with patients, carers and citizens so that we can promote wellbeing and prevent ill-health”. https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
This new relationship will be exemplified by members of the People’s Panel to show how working together, or coproduction, can happen in practice between patients, carers, and organisations and hopefully usefully bring a ‘reality check’ to the many conversations and debates that will take place over two days.
Working together or true coproduction is not as easy as it sounds in reality. Often I have found myself being used for a consultation or engagement event where I know that nothing I say will change anything and all that is really required by the organisation is an endorsement so that they can ‘tick’ the patient/carer/public engagement box.
That kind of exercise is so short-sighted as no one really gets anything positive from it- the organisation doesn’t get the insight they need to be really effective and for me, as a patient expert, all I’m left with if a feeling of frustration, having had my time and limited energy wasted.
I’m pleased to say my experience with EXPO15 and the Coalition for Collaborative Care, http://coalitionforcollaborativecare.org.uk
where I am a coproduction member, has been positively different. Specifically in the planning of the event:
- Patient/carer views were listened to seriously, discussed and acted upon;
- Proactive advice and suggestions were welcomed;
- Patient/carers were valued as equal members of the planning team.
Equally I have respect for the professionals who have key roles in planning such a high profile, national event with tight deadlines, a zero budget and small team. This is indeed evidence of developing better ways of true partnership and really working together from design to implementation.
It has been said that this year’s EXPO 2015 “..will be challenging, and will deal in reality not theory”. As a person who has Long Term Conditions I deal with the reality of that every day which includes chronic pain, limitations in mobility and lack of stamina on the negative side but also includes positive insight into personal resilience, into health and social care organisations and how simple changes could make big difference to people’s lives.
So I’m really looking forward to taking part in the two days in Manchester, my home city, on 2 and 3 September and particularly working in partnership with other members of the People’s Panel, the Coalition for Collaborative Care and the people I meet.
I’m looking forward to listening, learning and hopefully influencing too so that I can feel I have made a positive difference in the drive to ensure that true partnership working becomes embedded across health and social care so that person centred care can become a reality for everyone.
In other words the ‘get real’ factor – hope it helps.
I was fortunate to attend the recent NHS Confederation conference and exhibition in Liverpool last week. I felt privileged to be able to see and network with many people from a range of organisations involved in health and social care.
Everyone I met or listened to was keen to share their experiences, and sharing for me was a constant theme throughout the three days.
I always reflect on what I’ve heard, who I meet and write up notes from sessions attended for information to share with my colleagues at http://gmcsu.co.uk.
I thought it might be useful to share more widely what, and who, stood out for me during the three days. I’ve put related links in so that if you weren’t there and are interested you can check them out in your own time.
So here are the ones I’m still thinking about:
This was a really impressive speech, which encouraged everyone to get off the ‘burning platforms’ and embrace a ‘burning ambition’ for changes needed in the future. Rob emphasised the need to support sharing of information and the collaboration of genuine co-commissioning.
2. One patient, different perspectives, many different outcomes: NHS Leadership Academy
I took part in this interactive session, taking on the role of a GP, where enthusiastic participants (who took on other health and social care roles) shared views, and discussed and debated many practical, ethical and real issues of commissioning and providing good health and social care.
Thanks to Helen Stevens, Head of Engagement, from the NHS Leadership Academy and her colleagues for their excellent facilitation of this activity. It brought out many of the complexities of systems leadership and certainly made me think further about integrated care for older people.
3. Dr Patrick Soon-Shiong: Transforming models of care – this time it’s personal
Dr Soon-Shiong is a physician, surgeon, scientist, businessman and philanthropist whose presentation completely blew me away. Firstly, this was for the clinical breakthrough he’s making in cancer diagnosis and personalised treatments using genetics, genomics and cracking the DNA of different cancers.
Secondly, for the work he is doing with NANTHEALTH on an interoperable system, which links data, knowledge, and information in an interactive way. The system can be added to any platform and can accelerate the coordination of health and social care data, and information for patients in real time, and in a cost effective way.
Kate Granger was the last person to speak at the conference and you could have heard a pin drop in the hall as everyone concentrated on what she had to say. Kate is now famous for starting the #hellomynameis campaign to remind healthcare practitioners to introduce themselves to patients. http://hellomynameis.org.uk
She talked about the ‘little things’ that make a big difference to her as a patient and gave examples of the kindness she has received and reflected on her experience.
Kate is actively raising money for the Yorkshire Cancer Centre and has written two books ‘The Other Side’ and ‘The Bright Side’ http://theothersidestory.co.uk
She has raised over £100,000 to date but has £250,000 in her sights before she dies. She plans to jump out of a plane in August to raise further funds.
She is a truly remarkable, compassionate and determined young woman.
These top four speakers demonstrated the art of sharing in different ways that can help to improve and/or change health and social care for the better.
Other people who made an impression on me included:
Helen Bevan, NHS Improving Quality
Lisa Rodrigues, Chief Executive, Sussex Partnership NHS Foundation Trust
Ceinwen Giles, Patient Leader and Trustee, Shine Cancer Support http://www.shinecancersupport.co.uk @ceineken
I’m interested to know if you were at NHS Confederation – what stood out for you and how do you share the work you do?
If you weren’t at the conference I hope you’ve found my thoughts and links interesting. Is there something you would like to share from your experience in health and social care that could benefit others?