#AboutMeLeeds – It’s A Matter of Trust

I am really interested in the power of information to transform care and improve safety. You may have picked this up from an earlier blog – “Civil War, Heart Failure, Sex and Big Data” – and some people may know I was a professional statistician for a while. So I was delighted to be asked to contribute a blog to #AboutMeLeeds – a week long discussion on data and privacy and innovation. Details via Victoria Betton’s excellent Digital Mental Health Site are here

All of the blogs are worth reading – and cover diverse and bumpy ground. From using data to transform care, to critical questions like “how private is private?”. Find them all here

aboutmeleeds-120x120

“It’s a matter of trust

The Secretary of State for Health, Jeremy Hunt, did a back to the floor session in our services last week. He worked alongside health and social care staff looking after older people who needed extra help to become well enough to go back home. During the staff round table discussion at the end of the session, over a cake and a sandwich, he asked what would be the biggest change that would improve care?

SofS

The answer may surprise you. The physiotherapists, Occupational Therapists, Care Support Workers, doctors, nurses, catering staff and others did not ask for more staff or better facilities but better data. To have a single set of information that could be communicated once, added to anywhere, shared and held electronically would make clinical decision making, care preferences and communications better. The nurses and social workers who met Norman Lamb, the Care Minister, said pretty much the same thing.

What gets in the way of this?

Alongside the technological and cultural issues lies a complex issue – Information Governance. Two words that strike fear into the heart of many who wish to revolutionise healthcare.

Surely the NHS and Social Care organisations should be able to share all data with each other?

No they can’t. A sensitive issue you have shared with your GP may not be relevant or appropriate. For example, should relationship problems that are causing stress in a relationship and potential mental health problems be common knowledge?

OK, but don’t people believe that this happens already anyway?

Perhaps they do – although anyone using the service over time will quickly know this is not the case. GP clinical records are not visible to all community staff. Hospital records are not shared outside the four walls of the hospital and many community records languish on paper in people’s homes and health centres. This needs to change and it must be done safely.

For me, Information Governance is as important as Clinical Governance. Keeping the information that we hold about patients safe and using it appropriately will be at the heart of reforms – for two reasons:

Firstly, it is a matter of trust. The NHS and Social Care both deal with people at their most vulnerable and hold information for which stigma remains. Mental health conditions, sexuality, alcohol and drug abuse, HIV….issues affecting people from all social strata, despite the best efforts of brilliant campaigns like Time to Change. Trust is at the heart of the relationship between health and social care and citizens. We trust our GP more than any public figure – 94% trust rating according to MORI for example – and if we are to succeed as we radically transform and change care that trust must be retained. [We can have a go at reducing stigma alongside this too].

trust

Secondly, services must be integrated around the needs of people not organisations. This requires data to be shared in ways that are currently not feasible.  Real time data, that are accessible to patients and care givers, in ways that my staff were demanding from the Secretary of State. This requires the way we think about Information Governance to change – to be a gateway and not a barrier to sharing data. This will be harder than it sounds. As the NHS becomes more complex and pluralistic, the approach will need to change – and patient consent and trust may become a matter of personal politics as much as safety.

Is it possible to get this balance right?

Yes. If we can assure people that they have a say in what is shared and create simple mechanisms for giving consent. People already make informed choices about what they will share every day on social media, for example. Some of their choices may appear unwise – but they are theirs to make. This will need the right clinical leadership, the right public debate and a focus on the real prize: Safely sharing your data so we can always provide safe care… and ultimately so we can stop wasting everyone’s time asking questions you have already answered.”

Thanks to everyone at the Leeds Data Thing for their support

Cinderella’s 100 million pieces of magic

What Does the Term Cinderella Service mean?  I was musing about this recently. Here is the Longman English Dictionary On line:

“a person or thing that has been ignored or treated as less important than other people or things – Example: A Cinderella  service within the NHS.”

There are many potential Cinderellas in the NHS – each unheralded or put upon service will hear the claim routinely. Mental Health Services, rehabilitation, renal support, learning disabilities have all staked a claim.

I was going to suggest, looking at the definition, that NHS Community Services are “ignored and treated as less important than other people or things” and therefore fit the bill. It is rare for a politician or senior NHS Leader to talk about a community matron, podiatrist, dietician, family support worker, health visitor or school nurse. Most would struggle to tell you what an Occupational Therapist does – like all our staff they are just brilliant.

DN OT2

And show me the policy documents that trumpet the role NHS community services will play in the future system – one tailor-made for them. Michael Scott wrote about this here. I have also written about this here. The policy documents don’t exist and the scale and role of community services is not understood. But…….

Then I thought about the 2 million contacts we conduct every year in Leeds. The difference they make and the satisfaction and support that they give to the people who really matter – the patients and families we support. I wrote previously about the “Little Miracles of Kindness and Compassion” that take place in homes across the City. Helping a child communicate for the first time. Rebuilding a life after a stroke. Keeping your feet and your sight as a diabetic. Preventing a suicide in prison. Helping teen Dads work out how they need to be in frightening new lives – where we value them not treat them as pariahs. Sourcing patients with STDs and getting them help. Or, as a grateful family told me about their Dad recently, a good death with the sun on your face in the garden. And as one older lady described to me at our Colorectal and Urological Services Open Day –

“The doctor referred me to Sister Lodge. She has helped me get my life back. She has given me hope.”

Jen

So maybe it is time to rethink the idea of cinderella services. Because if 2 million contacts are part of the Leeds Landscape, then I reckon maybe 100 million contacts take place in NHS community services like ours in England. That dwarfs activity in hospitals. And every contact will be working with people to help them with something they believe is important – their lives. Ignored and unimportant? No.

Cinderella-movie-09

And then we need to think about Cinderella herself. Wasn’t she the one with all the talent, resourcefulness and ingenuity?

So if being a Cinderella service means being cherished and valued by the people you serve and having the skill and talent to succeed in the toughest of climates, then I am proud to be running a Cinderella Service. One that, with my colleagues across the country, tries to pull off 100 million piece of magic each year.