Through the eyes of a commissioner: what really matters in cancer care

It is the little things that count – people smiling, looking you in the eye. That is what I learned after I was diagnosed with cancer with a 20 per cent survival rate.

I helped draw up the shortlist for the interim chief clinical officer to replace me.

It felt like the final bit of losing the me I have been since first coming to Warrington Clinical Commissioning Group.

‘I built up the CCG on the principle of trying to see the best in people and giving them the freedom to be creative’

My time had previously been measured in meetings, coaching, one to ones, conferences, 16 hour days in London, sometimes two or three times a week.

Productivity in terms of what I could see coming out of my time spent was obvious.

I worked as a GP and most of my career has been in senior NHS management. I led the creation of Warrington CCG. I built it up on the principle of trying to see the best in people, and giving people the freedom to be creative. Then on a study tour to Sweden in May last year I started having difficulties swallowing. I went from being the world’s fastest eater to the slowest.

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Coping with status loss and casual disrespect

I remember an episode of the TV programme Casualty many years ago. An elderly woman in a nursing home had a fall and needed admission. The paramedics, like the nursing home staff, addressed her as Rosie.

Another resident and friend pointed out to them that in fact the patient was once a professor in biology at Cambridge University. Now she is only Rosie.

Having been in the medical profession for over 30 years - about 20 years of it as a doctor - I came across this thoughtless disrespect all too often.

I am probably guilty of it myself - even though I would never address a person by first name unless they were a child, a good friend, a colleague or was specifically invited to do so.

I do not want sorrow or well meant advice on how to cope, but then again sometimes I do. How is the person dealing with me to know how to get it right? 

‘What I could not bear would be the reduction from doctor and respected person to “first name” empathy’

However, what I could not bear would be the reduction from doctor and respected normal person to “first name we’re having a cuppa” granddad empathy.

The good experiences

I have learned we are incredibly lucky to have the health service we have got.

I know we do not get it right all the time. But I was proud of the services we commission for Warrington. And I was proud of the NHS.

My initial thoughts on my test and treatment were: we do serious stuff really well in the NHS.

‘I was proud of the services we commission for Warrington. And I was proud of the NHS’

And I do not think it was because of who I am. Most people on the front line did not know who I was. For example, when I had a suspected heart attack and was taken to Warrington Hospital, the ambulance crew was calm, professional and humorous throughout.

The communication from the accident and emergency staff was excellent. Some people there did know who I was but the rest of the department appeared calm and worked smoothly. The many changes the CCG and the hospital have been working on were bearing fruit.

The unacceptable experiences

But I have learned that big, shiny hospitals do not necessarily equate to good care.

My friend Tony had an unhappy four hour stay on a ward. The appointment had been to remove a drain but no one was expecting him. No one had any information about him.

He had to hang around for a couple of hours before anybody did anything and then this was only after he had personally tracked down the ward manager. Four hours after he was told to attend, his issues were addressed.

Good nursing care is not just about following processes and completing paperwork. It is about at least asking a person how they are feeling, are they in pain, do they need a wash? It is about listening and trying to meet the needs of the individual, even if that does not fit with a precise ward routine.

‘Good nursing care is not about following processes. It is about at least asking a person how they are feeling?’

Although he would single out a couple of individuals as demonstrating care and compassion, the chief nurse’s 6Cs of care, compassion, competence, communication, courage and commitment were sadly lacking for much of Tony’s stay.

His experience has been such a contrast to my own on the Cedar Ward at Liverpool Heart and Chest Hospital, which had been so good. Such variation in nursing practice within a few miles of one another is surely unacceptable.

My first poor experience of the NHS was an appointment with my surgeon. I found out the doctor was busy elsewhere as he had been double booked to do a paediatric clinic. I was not seen until two and a half hours after the appointment time. A long time waiting to know your future. But when I saw him he confirmed the good news I had had earlier on the phone. The tumour had not only shrunk, but its metabolic rate had slowed down.

As part of my hospital stay a member of staff asked me to complete the friends and family test. As my care overall had been so good I rated everything highly.

I also tried to share the couple of things that had not been as good as they might have been. But there was no opportunity to give any reflective feedback or constructive criticism in the broad brush of the feedback survey.

Missed opportunity

When I was moved from the high dependency unit to the main ward my first encounter was with a nurse who was very different from my other experiences. They did not introduce themselves, did not look me in the eye and immediately made a couple of mistakes with my IV regime that I had to correct.

Whenever they came into the room they brought an air of anxiety and nervousness, and they were abrupt and rough in their personal handling.

Fortunately the care assistant who did most of the personal care was lovely - so offset the impact of that specific nurse. I was very concerned at the prospect of being looked after by that nurse again. As it turned out the shift rostering meant they did not care for me again.

I mentioned this to the friends and family test interviewer who suggested I tell the nurse in charge. She did not offer to act as a conduit and there was no annonymised opportunity for feedback.

In the end I did nothing. Why? Because I did not want a fuss.

I was too tired and focused on my own recovery. I was concerned that I was too tired to be able to phrase the feedback in a constructive way. I excused the nurse - may be it was just an “off” day.

‘To achieve excellent care we need to collect direct patient feedback about the specifics of their care’

If it was not just an off day I had left a nurse who was offering less than excellent care in place for others to experience. An opportunity for organisational and personal learning had been missed.

If we are to achieve truly excellent care we need to find ways to collect direct patient feedback about the specifics of their care, not just broad brush impressions.

After a recent hotel stay I was given the opportunity to comment on all aspects of my experience, including specifics and comments on staff. Why do we not use the same approach for hospital care?

After coming home I was able to speak to the specialist nurse when I was worried and I had a joint telephone appointment with the specialist nurse and dietician.

The district nurse came to remove the drain sutures and check the wound. I could not have asked for anything more in the way of integrated care.

Time to move on

I had a miraculous report at post-op histology, which revealed no evidence of cancer at all and just a bit of scarring where the tumour had been.

I thought the news of the all clear would mean life would go back to what it was before. I should have known better. We can never go back; life is not a circle but a spiral.

The effects of the chemotherapy and consequences of major surgery have left me with problems that would make it difficult for me to carry out what would be required of me in an average week as an NHS chief clinical officer.

Most importantly, I do not feel I have the energy and oomph I used to have which I think was much of what I contributed to the organisation.

“The experience has brought me a fresh awareness of life and what is really important’

It has taken a while for me to accept the decision not to return to my day job in the NHS was the right one. Andy Davies, chair of Warrington CCG, has asked me to undertake a “critical friend” review of the last year and a stocktake to inform the board and any new future chief clinical officer.

The CCG has a fantastic team that has developed better quality, better value services. But “good enough” is the enemy of excellence, and I know everyone at the CCG will want to continue to build on these good foundations.

I will be very surprised if I get to the age of 60. Cancer is not just taking away my life, making it small, diminishing what is possible - but it is affecting everyone around me.

I now know that self-sufficiency is a myth perpetuated by pride and temporary success.

Health and wealth can disappear instantly, as can life itself. The experience has brought me a fresh awareness of life and about what is really important.

Dr Sarah Baker is pioneer minister for Chapelford and was chief clinical officer at Warrington CCG until June this year. The CCG was named HSJ Commissioning Organisation of the Year in 2012. Read her blog