Only the tip of the iceberg?

Question from Care Opinion

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picture of Ben Pathe

A patient who raised a concern on Patient Opinion and then subsequently posted an update of a positive outcome got in touch with us recently. This is what they said:-

Thank you for letting me know that you have published my patient feedback. However I wish you to remove this please as I feel now that it is causing raised eyebrows amongst the NHS staff.

Patient opinions of what happened (I have since found out) is not really the route when patients like myself have cause for concern. In other words it appears that doctors just do not like their decisions pushed sideways. Although I wanted to come forward with my experience, I have found out, it is just not worth bringing things to light in this way.

Basically as I see it (which I knew anyway) when people like myself comment on a site like yours, it gets doctors backs up and it just causes contrived bad feeling. I know this to be true as I have experienced it.

I am a professional person , one who has held high positions in my life but when people like myself "complain" and these doctors and hospital staff get to see it, they don't like it. In the end, everything seems to go against the patient.

It is very frustrating all round but if one doesn't want to upset the apple cart, then one has to keep one's mouth shut or move to another hospital.

I don't want to be connected with writing feedback on a public website again. It's just not worth it.

We contacted the patient confirming we had withdrawn their stories. We assured them that they had not done anything wrong by sharing their experiences with us.

We also told them that all current national policy drivers were encouraging transparency and real time feedback.

They replied:

Thanks for your comments and understanding. What you know is only the tip of the iceberg.

It makes us wonder if how this patient was made to feel is only the tip of an iceberg of patients being dissuaded from giving public feedback. Is this happening to other patients?

For NHS staff to react in this way seems at odds with Sir Bruce Keogh's vision of patients as "informed participants in the process" and "active assessors and regulators of the NHS."

As ever, we would welcome your comments and thoughts. Do respond below.

Response from Jennie Negus, Head of Patient Experience, United Lincolnshire Hospitals NHS Trust on

I found this really sad to read......I am confident that the majority of staff and certainly those of us within the patient experience field would also find it incredibly sad. Genuinely seeking out and listening to our patients views and experiences is critical to understanding our service delivery.

But...it takes courage, it takes an ability to be open not only in the giving but in the receiving too And that is where I think many people struggle. But the crux is culture; individual personal and professional culture and equally organisational culture. The organisation has to be courageous and strong in stating its expectations and being clear that it expects all staff to demonstrate its values and behaviours; leading from the front. 

I think some staff just don't get it...they don't get the shift to a patient centred NHS and are still in a paternalistic old school model of 'doctor knows best'....there's an arrogance that smacks of 'why are you questioning my decision / judgement'? Despite all the research and the debates they just don't get it. And what they don't get is the understanding of perceptions or assumptions or expectations. My patient experience teaching majors on these concepts centred around empathy...if we don't seek out to understand another persons perceptions, or consider their assumptions or appreciate their expectations then we will not understand their reality. To this end they feel threatened when challenged, when questioned.....I've seen this; a defensiveness; an affront. 

But, just as many don't get it I believe many more do and that the critical mass is shifting, to the point that those who don't are becoming increasingly exposed. We know it's not good enough, we know how important listening to patients is and the ever growing body of staff working with patients to understand their experience and use this feedback to make a difference. Communication is two way and communication has to involve listening.

I was teaching recently and someone said that they didn't feel they should have to say sorry if they hadn't done anything wrong....they didn't get it. I also had a new matron recently who without prompting telephoned a complainant to apologise and give her name and contact details promising she would look into all the issue that had been raised. One didn't get it, the other clearly do....and there are more and more who do. We need to keep this wave moving and gaining momentum and we need to be clear to all our staff in our organisations that we expect empathy and care and compassion. I am really seeing the shift, I used to have to fight to be listened to when talking about patient experience, now I am being asked to come along - I used to have debates and arguments about the statistical relevance of qualitative data and now I am asked for themes from PALS and surveys regularly. It comes back to culture, a culture led from the top and throughout, a culture that is role modelled and evidenced.

What makes this really sad is that there had been listening, there had been a positive outcome but this was ultimately ruined...and I imagine that there are more positive than negative outcomes. We have to regain patients confidence that telling their stories, raising a concern will not have a negative impact...and if any staff do discriminate then this cannot be tolerated. There isn't a c for consequence within the 6c's....but there should be.

Ben, I think there is an iceberg.....but I also think it is melting slowly but surely. I am actually very worried about the polar ice caps disappearing, but this iceberg is one that we must all pull together and ensure that it continues to melt. 

Response from Rambuie on

This leaves me seriously wondering if the medical profession as cited here is not riddled with an extremely unhelpful paranoia which sets them at odds and confrontational with the people who they purport to be helping - the people with ongoing lived experiences whose issues you would think were central to the raison-d'etre of any mental health service! 

If we are to dissolve the notion that there is a place where Ambition and Professional pre-eminence takes centre-stage - Right here - then some reflections from the Professions as to whether they should not be taking a step backwards and taking up a stance that is less divisive and confrontational towards their clientele and more conciliatory towards the view that sincerely held mis-givings expressed by us the clients have a constructive role and take everyone forward, while expressions of dominance and Absolutism do not. 

I am reminded of the quip:  'What is the difference between a Psychiatrist and God?'  The response is:  'God does not think He is a Psychiatrist'. 

Response from LoLo1 on

Thanks to Patient Opinion for raising such an important and sad example. As Jennie points out, at the heart of such responses is a feeling of threat and defensiveness, and that's what we have to find ways to overcome. Face-to-face conversations between groups of patients and groups of staff are one way to do this. a) it's harder to be individually aggressive or vindictive when you are in a group setting (and that applies to both staff and patients) and b) meeting as equals rather than keeping people at a distance helps make everyone seem more human, and reduces our ability to demonise people as 'the enemy'. As Rambuie suggests, it then becomes less divisive and confrontational, and more about embracing Patient Opinion comments as 'sincerely held misgivings' rather than a personal affront. I'm sure there are many places out there who regularly discuss PO comments with patients and can show the way.

Louise Locock

Health Experiences Research Group

University of Oxford

Response from Shaun Maher, Improvement Advisor, Person-Centred Collaborative, Healthcare Improvement Scotland on

Hi Ben

Thanks for this.  Speaking from our experience in Scotland we are only very much at the beginning of this shift.

Generally speaking I think many staff still fear feedback rather than welcoming it.  Afraid that unreasonable requests will be made, afraid that their already busy days will become even busier, thinking that pts and families are not qualified to comment on the quality of a service provided......  and maybe a million and one other fears and reasons not founded in experience but in presumption and ignorance.

I am aware of a few organisations and a few clinical staff who pro-actively gather feedback, but this is still in its infancy.  It still doesn't feel safe to be open and honest about experiences that are not so good - I say this from a personal experience recently when I found it difficult to know who to speak to and how to leave feedback.

So, a long way to go but that's ok!  With help from great organisations like PO we'll get there ;-)

Thanks again

Shaun

Response from Jennie Negus, Head of Patient Experience, United Lincolnshire Hospitals NHS Trust on

This blog has certainly raised some debate; and rightly so. I have been watching on twitter as my notifications have popped up this morning but didnt respond immediately as I was focused on finalising procedural guidelines for the implementation of our new complaints and concerns pathway. We have called it 'See it My Way' and it has been designed with patients and ex-complainants and they told us very clearly that empathy, understanding and perspective taking was critical.

Many people dont really understand empathy; this short video is excellent and I use it regularly in teaching: http://www.youtube.com/watch?v=1Evwgu369Jw 

Rambuie is spot on - professional bodies have to lead from the front; I believe they have a professional obligation to do so - duty to care isnt just about putting a plaster on; it is about caring for the person!

Confucius (apparently) said: 'a person who commits a mistake and doesnt correct it is commmitting another mistake'. In their simplest terms complaints or concerns are statements about where expectations have not been met; they are also an opportunity to put things right. Barlow and Moller (2008) call complaints a gift.......we need to as Rambuie states step back, wash away the arrogance and 'closed shop' mentality and collectively as a health 'family' find the way to overcome the threats and defensiveness as Louise points out. We need to accept the gift graciously!

However whilst we need to be supportive and push development and growth towards truly listening and responding sensitively and compassionately I also think we need to get tough - we need to say to all staff 'how would you feel?'.

 

Response from Ben Pathe, Business Development Officer, Patient Opinion on

Wow thank you so much all for your contributions and eloquence. Changing culture by its' very nature is bound to be more evolution than revolution. It just takes time for very best practice to become the accepted norm.

Jennie hits the nail on the head when she asks how would you feel? With bad experiences, people just want to be listened to and acknowledged and more often than not just want to make things better for others. In terms of PO specifically, it genuinely upsets us as a team when a harrowing experience receives a cursory, generic response. Imagine how deflating that would feel if that were you who had taken the trouble to share.

Shaun, great to hear your views. I guess it is still relatively early days. However what's going on with PO in Scotland is historic and groundbreaking for us. The progress in Scotland is hugely outstripping that in England. NHS England could learn so much from NHS Scotland in this regard. 

Response from Ian Reeves, Consultant geriatrician, Medicine for the Elderly, SGH GGC on

I really recommend a read of Ann Clywd & Tricia Hart's report from 2013.

Clywd and Hart report

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/253320/complaints_review_report.pdf

It's a great summary of 'feedback' and noted

"Failure to take account of the inherent imbalance of power between healthcare professionals and patients, including the patient’s fear of retribution"

Which is a quote originally from Dame Janet Smith who reviewed complaints procedures in the Fifth Report of the Shipman Inquiry, published in 2004.5

My point is that it's been a decade since that quote, and although we have moved in the right direction, we still have some way to go before we can remove that fear.

 

Response from Ben Mearns, Chief of Medicine, Surrey and Sussex Healthcare NHS Trust on

Dear Ben

I find this story very hard to read because it says to me that the author felt in some way threatened by raising their concerns. Perhaps the best that we can hope is that this is feeling that the person has and if explored could be resolved, but at worst this could be a warning flag of a bullying attitude from the organisation concerned.

What frustrates me is that I feel we have a duty to defend this patient and to ensure that the matter is put before the CEO of the organisation concerned but of course we cannot do that because of confidentiality. I hope that the patient will feel brave enough to allow someone to do this on their behalf as I am sure that the majority of staff in the NHS would become their advocate. I would happily volunteer to be a contact if that would help - hopefully its not my trust! I would be devastated if it were.

In the post-Francis era I think everyone reading your blog will have an intense desire to collectively sort the issue out and it is interesting to reflect on how that can be done in this circumstance. Perhaps nothing can be done, but it does leave the possibility that we know there may be a problem out there without a solution.

Whatever the next action it would appear that one thing we can all take from this is a general lesson to learn that we must ensure that we protect those who give us feedback. It is a hard thing to complain and we should be so grateful for any stories shared with us. I will feed this back at our hospital to ensure that we always think of the consequences and the perceived consequences of dealing with feedback.

On a more positive note I suppose it does highlight the need of patient opinion to offer anonymous feedback, because if anonymity had been maintained in this case then perhaps our author could have posted their feedback and remain unknown.

I hope that they are feeling better now and that the responses that you get prove to them that generally there is a culture change in the NHS and that the majority will ensure that patients are protected at all times.

Ben

Response from MikeD on

I too share the concern about the reception given to feedback, but I am not too surprised. I am writing as a patient, a relative of patients and a medical educator involved in teaching, among other things, feedback that people can learn from. I am aware that among communities of learners there is a lack of skill in giving feedback; there can be an emphasis on what has gone wrong rather than a focus on learning and this inevitably creates resistance and rejection. I think this can be a feature of patient opinion.

My personal patient experiences have persuaded me that the NHS is good but flawed and the flaws can have their origins in individual behaviour, misunderstandings, resource issues, carelessness, over-enthusiasm, stress, stupidity etc etc. After major surgery (brilliant, followed by brilliant after care), I saw a patient left in great pain because of the time pressures of a 32 bed ward and 4 staff (two nurses, two HCAs) over a 12 hour night shift. What impression did this leave me with? Really poor, if the focus is on the negative, or brilliant, if I am selfish enough to focus on my personal experience. A more considered response has to address all of the issues and this is when feedback gets complicated and in some cases, beyond the capacity of people to give it effectively and accurately.

The challenge is that people may send or hear the headline elements of feedback and the good things are not represented or are drowned out.

This can lead to a culture that is resistant to listening and I think this is a reality in some trusts. They need considerable help to learn how to learn from their experiences.

Mike

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