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Person Centred Care and coproduction – the ‘get real’ factor.

expo2015This 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.

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Joining the dots

My first blog was written in March 2014 and was partly inspired by the NHS Change day initiative, which encourages individuals, groups and organisations to make a pledge for positive change. Now a year on I’m reflecting back and looking at new connections made since then.

The whole initiative really captured my imagination, as I firmly believe in the power of one individual to inspire others and then through connections and networks to set off a chain reaction for the better.              People-Bulbs-1-01

This March 2015 Change day took place again and I made another pledge, which this year is to promote and share good
practice in patient experience in health and social care by using positively my personal experience as a patient with long-term conditions and my professional and voluntary connections. More detail can be found here.

http://changeday.nhs.uk/user_action/joining-the-dots/

I’ve recently, in February 2015, become a member of the co-production group of the Coalition for Collaborative Care (C4CC) where each person in the co-production group either has, or is a carer of someone with, Long Term Conditions. I’m hoping that together with the whole team at C4CC I can contribute to positive changes in the way health and social care is designed, delivered and evaluated for people with Long Term Conditions. For more details see:

http://coalitionforcollaborativecare.org.uk and https://twitter.com/Co4CC

As one lone individual, who can now only work part-time because of health issues, it can feel a bit isolating sometimes not having a substantive full-time role and function as I did in the past. But what keeps me going is the opportunity to identify and encourage more productive connections to be made within, across and beyond the different groups I work with in health and social care.

Using social media and Twitter in particular has for me opened up a wide breadth of possibilities in making new connections, strengthening existing ones and trying to be a positive catalyst for debate and change.

One very successful catalyst for positive change in health and social care is Gill Phillips who created Whose Shoes, a co-production tool to help people work together to improve lives, and who I met first on Twitter https://twitter.com/WhoseShoes

and had the pleasure of meeting in person quite recently in London.

Gill has also introduced me to the joys of Pinterest https://uk.pinterest.com and I found this poster on one of Gill’s board (now pinned on one of mine!), which made me think a bit more about this whole connections issue.

 Joining dots

I’m connected to a number of health related groups and individuals through voluntary and Lay member roles in the NHS and if I mapped this out the page it would look quite busy but that’s not an end in itself and indeed could quite rightly be described as merely a ‘collection of dots’.

What is really important is what happens when the dots get connected or joined up such as for example when the North West NHS Lay members network meet up at Quarterly meetings and share information, ideas or discuss current topics and challenges.

But the story doesn’t end there as even though there is value in doing all of those things together, ‘dots’ sharing and thinking things through as it were. It is what happens when people go back to their own organisations and use what they have learned, digested or thought about to inform decisions and make changes that will improve health services for others that will make the biggest positive difference.

I’m now looking at all the ‘dots’ I’ve collected and seeing if I’ve made or enabled productive connections and what is happening or could happen because of those connections.

In the same way on the NHS Change day website they want to hear about actions that are taking place following people’s pledges or undertakings this year so that they can be shared and inspire others too.

So are you joining the dots and enabling positive connections in whatever you do?

And finally are you using your wider connections to share what you’ve done and inspire others? I’d love to hear about what you’ve done and share it.

Check out your dots-are they connected?

Small things brought together

The art of sharing- reflections on NHS Confederation conference Liverpool 2014

 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:

1.

RWebster  Text RW

https://www.youtube.com/watch?v=FXz_01uKdwc

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

http://www.leadershipacademy.nhs.uk/confed2014/

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          

https://www.youtube.com/watch?v=ZYkplV6U44M

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.

4.

        KGranger        KGranger #hello

https://www.youtube.com/watch?v=hk6TydLCiy4

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.

http://www.justgiving.com/kate-granger

She is a truly remarkable, compassionate and determined young woman.

 Finally…

 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
https://changeday.nhs.uk/healthcareradicals@helenbevan

Lisa Rodrigues, Chief Executive, Sussex Partnership NHS Foundation Trust

lisa.rodrigues@sussexpartnership.nhs.uk @LisaSaysThis

Mark Doughty,
The Centre for Patient Leadership
mark@centreforpatientleadership.com@patientleaders

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?