Awareness days can save lives and change lives

My weekly message to staff from 14/09/2018


Welcome to The View


Hello, my name is Rob, and I’m your chief executive.

It could be easy to become jaundiced and cynical when faced with a continuous cycle of “awareness days”. What difference do they make anyway? I would argue that they can make a profound and lasting difference that echoes through time. Let’s take two examples from this week.

Sepsis claims about 31,000 lives each year in England. Children, people over 75, people who are immunosuppressed and those with multi morbidity are more at risk. Better diagnosis and treatment of sepsis has become a priority for the NHS in England since 2015, following tragic cases of delayed treatment where parents fought for greater understanding and focus on sepsis. World Sepsis Day took place on Thursday and continues to highlight changes that are required.

Zoe Picton-Howell worked with UK Sepsis on their campaign on the day. She wanted the following to be widely heard:


This is a lesson that she has learned the hard way, following the death of her son Adam in 2015. It is a lesson we need to learn, given our patients and service users are vulnerable and often have cognitive or physical issues or both. If you read the sections on people at risk, they are our community matron caseloads, the people on a district nurse, podiatrist or occupational therapist’s round and the children our learning disability, specialist nurses and therapists see every day. You can read the NICE guidance available to help staff spot the early signs of sepsis here.

You can also read Adam’s description of what good care looks like here. Please do, he communicated it from a hospital bed by blinking the words to his mum, and the wisdom of a disabled 13 year old boy provides firm evidence that everyone has skills and assets to bring if we only find a way to see them.


World Suicide Prevention Day on Monday got a lot of airtime. Events took place around the patch and across our Trust. The mayor and mayoress of Barnsley attended a football tournament at the wonderful Barnsley FC on Monday in aid of suicide awareness for example. Thanks to Hannah Burton, sports lead, for supporting the #AlrightPal campaign aimed at getting men to talk more openly.


This is something I care about and have been prompted into action by the Time to Talk campaign. It was that campaign that made me talk about the suicide of my brother. I now do so openly and have been overwhelmed by the responses from other people affected. The Wakefield and 5 Towns Recovery College runs a “Let’s talk about suicide” course – a friendly and confidential session where students learn the facts and common myths about suicide – to which I contribute with this short film. I know it makes a difference – from the people who have also been bereaved by suicide who I speak to and those who have come back from the brink.

Read these messages of hope that the Trust has been promoting this week. Hopelessness and helplessness are dominant feelings for people who have suicidal ideation. And we know that only 28% of people who die by suicide are in touch with mental health services. The rest are in touch with someone else or hidden. Hence the shock often felt when someone dies by suicide because nobody was aware of the suffering.

I would encourage everyone to take this free 20 minute training provided by the zero suicide alliance. You never know, you may just save a life.


Do awareness raising days make a difference? They can where they provoke action and a response. Zoe put personal tragedy to one side and used World Sepsis Day to inform and educate. Hannah got vulnerable people together and used World Suicide Prevention Day to inspire and motivate. So what will your response be?

Have a great weekend


Chief executive


#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


“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?


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].


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