‘Patient experience,’ what is yours?

Well, I’ve decided with this post to step into the murky waters of ‘patient experience.’ This has been building for some time, but it seems to have come to a head this week. If I’m honest, my own recent personal experience, was the straw that broke the camels back, but I have heard from so many people, including  Jemma Irwin  who in fact featured in last weeks Sunday Times, who now has terminal cancer because she wasn’t diagnosed early enough.

I would like to start by saying that my own personal care has been fantastic since I was diagnosed, and the nurses and doctors involved in my case are absolutely wonderful. There are not enough words to describe how I feel, when against all odds, they have saved my life and continue to keep me alive. I have carried that intense gratitude for the last seven years. But I am starting to realise that I have become blind, to what is happening around me.

There is so much more to patient experience, than coming away from the hospital with your life. Being a long-term patient has given me a very unique perspective on how things are working for people. I have seen it up close and personal for a long time. When other people were telling me about their negative cancer experiences, I struggled to believe it  was the same system that was looking after me so well. I was still insistent that things were good, and they were the unlucky ones. But in recent months I have started to look at things much more objectively.

Patient experience 1

Our Health Service,  should be as described, quite simplistically, a service. In many areas, it does not provide that service. Yes, eventually we will get our issues solved, hopefully, and if you ever need any emergency care, that will come, unquestionably. But as more of us live longer with long-term issues, I’m seeing the service element of things being eroded. I’m sure everyone will have their own answers, money, politicians, staffing, diversity of patients etc, but the truth is the system is not working as well as it should.

I would like to use the following analogy, as my view of how things currently are. If you are very hungry, and have to go to the only restaurant in town. You know you will wait ages for the food, the service might be average at best, but eventually when you have eaten, you are grateful! If you weren’t paying you might just accept that, but we actually are paying for our service.

One of the major issues I have experienced, is a vast variation of service between providers. I am treated in three major London hospitals, and my fears of being referred to one of the largest were unfounded. Their treatments and clinics run mostly to time, and the staff are wonderful, and make you feel relaxed. This tells me that the working environment is good, both from a management and organisational perspective.

On Monday, I attended my regular clinic, which I have been going to for 7 years, at least once a month. The nature of oncology clinics is that they are full of very sick people, generally older, and many infirm. Within the last year after much fighting, it was agreed that the appalling old clinic was no longer fit for purpose. Eventually a new one was found, and is a lovely place. New paintings, and decoration, and fab rooms for the clinicians. However still the same poor management! I am rarely ever seen within one hour of my appointment time, this time it was 70 minutes late. Having had my review I needed some medication, arriving at pharmacy to be then told there is a 60 minute wait.

Patient experience 2

Staff very polite and apologetic, but this is not a one-off situation. I felt embarrassed for those people. No management to be seen to support them. How is it that within 5 miles, one hospital can do things so well, and another so poorly? Within the same hospital it took 7 weeks to get a referral letter from one department to the other. When I finally arrived in that clinic, yet again, it was running more than an hour late. This is the same hospital that consistently ranks in the worst 10 for cancer patient experience, yet I feel no appetite for change from the management.

For the last 6 months, my 82-year-old mother, has spent months waiting for letters and appointments at another hospital, and this problem is becoming much more common. It seems also to be happening to most people I know. Even something as basic as making appointments doesn’t seem to be straight forward any more.

Unfortunately it seems that, as there is no competition, we as the customer have no choice. For me it is not about money, it is about organisation, and professionalism. I do appreciate that I am talking about hospitals, where emergencies happen and doctors get called away. But it’s the same problem every month. We all deserve better! Just because many people don’t have the energy to complain, does not mean that things are working well. What is the point of building a new waiting room, if the underlying problems still remain?

Nobody attends hospital by choice, many of us have to go there to receive sensitive news, or regular treatment. Generally people’s anxiety levels are already raised before arriving. Being greeted by problems parking your car, may be only the start of what is becoming a poor customer experience. Continual waiting and delays, seemingly caused by systems not designed to cope with modern day demands, is not acceptable, for a majority of patients who are elderly, or very sick and vulnerable. My challenge to the health system is if you really do want to improve the ‘patient experience,’ you will need to engage a lot better with the people who use your services.

My thanks go to the wonderful staff who are patient facing, and I know that things need to improve to provide you with a much better working environment. These are some of my experiences and opinions, please feel free to share yours!







  1. […] Well, I’ve decided with this post to step into the murky waters of ‘patient experience.’ This has been building for some time, but it seems to have come to a head this week. If I’m honest, my own recent personal experience, was the straw that broke the camels back, but I … Continue reading  […]

  2. oh, Chris,

    I am so very sorry for the frustration and disappointment you experienced as described in this very eloquently written post. I live across the pond so do not have the NHS. but I do hope that others who have had similar fiascos will share their stories. there is always power in numbers, and I am wishing you much success in gathering more information so that some sort of constructive communication (which you are SO good at!) can be brought to the attention of the management of the clinic. they need to know that patients’ stress levels put them at serious risk both physically and emotionally. and you are so right – patients who are very ill, debilitated, and vulnerable often feel too worn out to be able to complain. I get this image in my head when I hear many of the same poorly attended to patients, that there should be some sort of hot-line, right in the waiting area so that people can immediately be put in touch with a patient advocate; one who will listen and take note of every single case of interminable waiting, poor, or lack of, interaction with clinicians, and how it impacts their confidence in the care they receive (or not). and believe me, we in the US have many, many of the same scenarios that play out every day. can you tell that I just keep getting more angry while I am writing this? I am. I spent my entire career as an advocate for my hospice patients and their families and remember incidences of hitting a wall with attitudes of indifference and refusals to be accountable. quite simply NOT acceptable. my hope is that with your dynamic approach to problem solving, and the possibility of collecting more data to be able to wield in other forms of media about the pervasive nature of these negative experiences will promote change. I wish you every success, and I wish so much that I could contribute with more than my outrage on your behalf. please keep taking as good care of yourself as possible, dear Chris. and I hope that the empathy and compassion you so generously provide to others who also struggle comes back to you more than a thousand fold.

    much love and light, to you my Friend,

    Karen xo

    • Ah Karen!

      Thank you, for such lovely comments. I have tried working within the system, but patient involvement, is very much a ‘tick box’ exercise here. Our system likes to talk about how patients are involved, but generally only to listen, with a cup of tea! Unfortunately it is very difficult to change the management culture we have here. Government led etc.

      Now I have an independent voice, which in many cases has more influence. I received much communication about this issue, but most wanted to keep it private. There is still a fear culture amongst patients, who fear their care may be compromised if they are seen to complain.

      With your experience, I know you will understand. Thanks for your encouragement Karen, I will indeed continue my work as passionately as I can. As I always say, your experience is invaluable, and thank you for sharing so freely. I would love to feature a guest post from you if you would like that. Thx for all, Chris

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