Time for radical change to shift power to patients

Part of Time to Think Differently

It’s not looking good. It would be nice to think that things are getting better, but they’re really not looking good. More and more of us are getting dementia, and cancer, and diabetes, and more and more of us are getting dangerously fat. Even in a world where there was plenty of money to throw at a problem, this would be quite a problem. But in the world we face it’s looking much more like a bomb that’s going to explode.

It would be nice to think that the 467-page Act that the government has forced through on health and social care will address the problem, but it won’t. What we need in health is a change that’s much more radical than this. What we need in health is a very, very, very big change in the relationship between people who get ill (which is all of us at some point) and the people who are meant to make them better when they do.

At the moment, the relationship is a bit like a bad one between a parent and a child. The child is the kind of child who eats what he likes, and drinks what he likes, and sometimes nicks a bottle from the back of a kitchen cupboard, and sometimes nicks a fag. The parent is one who also eats what he likes, also likes a fag, and who doesn’t do any exercise, and is a bit tired and cross. The parent will see the child if he has to. He’ll make an appointment (at a time that suits him and not the child) and then pass him on to somebody else. And then he’ll send him to a hospital, because hospitals are what you need to heal the sick.

Hospitals aren’t what you need to heal the sick. Hospitals are where you go when you need to have a tumour cut out, or to have a blood vessel moved from one bit of a heart to another bit of a heart, or if you’ve got an infection that needs to be monitored all day and all night. But hospitals aren’t much good if you’ve got dementia, or diabetes, or smoke a lot, or if you’re just very fat.

What sick people need is a partnership. We need to have a relationship with our doctor, or a ‘nurse practitioner’ at a local health centre, who we see before we get ill. We need to work, with that doctor, or that nurse, on developing plans to keep us well. We need to be able to look at those plans, and at our progress, and at our medical records, online. We need to be able to email that doctor, or nurse, to ask questions and get advice. And when we need to see him, or her, we need to be able to make an appointment online, and at a time that fits in with our work. Since many of us have to work evenings and weekends, we will expect the people who are in partnership with us (in doctors’ surgeries, and health centres, and hospitals) to work evenings and weekends, too.

What we will expect in this partnership is a relationship that works both ways. We will expect to do more to keep ourselves well. We will expect the health service to provide better systems to help us when we’re not. We will, for example, expect phone calls and emails to be answered, and appointments to be fixed in good time, and files, and X-rays, and blood test results (which will now be stored, with our records, in a ‘health cloud’ we can access) not to be lost. We will expect to be treated like an adult, and spoken to like an adult, and we will not expect anyone to treat us as if their time was more precious than ours.

And if we have to go into hospital to have an operation, as I have had to do six times in the past eight years, we will expect the staff to treat us in the same way they would treat their mother, or friend, or child. We will expect them to remember that they are doing these jobs because they chose to do these jobs, and that we didn’t choose to be ill. We will, in other words, expect the people who look after us, when we’re at a low point in our lives, to do the jobs they were employed to do, and also, though you shouldn’t have to say it, to be kind.

Christina Patterson is a writer and columnist at the Independent. She has written widely about her experiences as a breast cancer patient, and has campaigned to improve standards in nursing.

@queenchristina_

Comments

Interesting debate. To achieve a healthcare model fit for future, and putting patients in the centre, one concept we can look towards is "Concordance" and replace "compliance" with it. In brief, concordance aims at putting patient and their needs at the centre of the medical consultation.

This concept can be applied to all processes and pathways. Patient groups and representatives should be put in the centre of pathway planning, and healthcare professionals should follow and "live" the experience of a small percentage of patients on a regular basis.

The mistake lies in the beleif that managers can turn bad workers into good ones by the use of guidelines/rules/legislation etc. You can't. If you start telling people to follow rules rather than work on their own initiative you create an evironment in which bad workers can thrive by gaming the system. Once the bad workers have risen to the top, the good workers then either become disillusioned and leave, or else start gaming the system as well in order to compete.

You don't need guidelines to tell staff that patients need to be fed and watered, you just need to make people responsible for using their initiative, and then reward the good workers and get rid of the bad ones.

Hilarious use of transactional analysis with bad parent and petulant child ameliorated by the absence of the rational adult. Excellent.

I wonder whether the relationship between the professional carer and their organisation is equally adult. In my work, I try to avoid the fog of the fundamental attribution error, as inevitably, the agent is less vital than their agency. The people who care, mostly know what to do and how to behave. The system around them, their organisation however, dictates what they are able to do. The cognitive dissonance creates a natural defence that enables the vocationally driven carer to keep turning up, without destroying themselves.

Let's not attack the defence (the effect) without dealing with the (system) the cause.

Thank you Christina for offering a visionary view. Like most people who’ve commented, I agree with your vision although I also believe we should be careful what we wish for.

To people who are very frail, and people with intractable health problems, the talk of self management can feel like one step from the cartoon image of the patient being give the tools to operate on herself in her kitchen. I’m always wary of one size fits all solutions and mindful that for people like my little nephew who is very severely disabled, physically and mentally, self management is literally impossible.

Thank you, everyone, for your thoughtful responses to my post. People with an interest in healthcare are clearly an awful lot politer than the people who contribute to newspaper message boards. Makes a very, very pleasant change. What I was asked to do was to present a visionary view of how healthcare could look in a few years' time, so to those who think I've been "simplistic" about hospitals, or anything else, that's why. The detail of all this is, of course, no picnic to work out, but we have to know where we want to be if we want to make a start...

A very thought provoking passage and set of comments thus far. In my mind, two broad things need to happen over the long-term. Firstly, a paradigm shift needs to occur in the attitudes of government, commissioners and health professionals regarding primary preventive initiatives that have a reasonably good evidence base for providing benefits over the longer-term. However, with the financial returns on such initiatives only potentially being seen over a 20+ year time horizon, such initiatives are viewed as inept and not considered economically viable. Second, with an increasing majority of the population, both younger and older alike, becoming connected to the internet in future years, primary care services need a systematic approach to keep up-to-date with technological advances. Admittedly, some medical practices do currently offer online appointments and access to medical records via the internet. However, uptake needs to increase nationwide, as does roll-out of other technological innovations such as smart phone 'apps' technology for patients.

Andrew Craig's 'Mantra' is worth a try, but how often are the professionals ready to listen? There are some excellent Professionals around; but often it is only when the Mediator or concerned party becomes involved that they begin to focus on the whole person.

Thank you Christina. What will the politicians and leaders in the NHS be remembered for - could they be remembered for standing for compassion?

The system pressures and personal and cultural factors are complex - what is less complex is that we tend to behave better and are more likely to thrive when we feel respected and cared for - that we matter. It will seem overly simplistic to many to speak of the 'uniting value of compassion' but when it feels as though a hospital, care home, GP surgery cares deeply about the well being of the people it serves a more healing and empowering environment in which partnership is possible is inevitably created. Readers may be interested in the 11 point plan for embedding compassion I wrote in response to an enquiry from Paul Burstow MP -

knowingyoumatter.com/2012/11/14/10-steps-to-embedding-compassion-in-health-and-social-care/

many thanks

Andy

In reply to Jason Maude; you say that for " presentation of cough, breathlessness and chest pain. [lung cancer] is actually 11th but there are other more appropriate suggestions higher up such as COPD, asthma, pneumonia etc. "

For the patient who actually has lung cancer, to spend time pursuing the other 10 diagnoses higher up the list is a disaster. It is precisely because these common symptoms have other causes that we, in the UK with our expensive specialist health services "protected" by a gatekeeping GP have poor cancer outcomes due to late presentation.

It requires much more than an algorithm to solve this problem.

I'd like to comment on Monica Slocombe's post which illustrates my point about the NHS being a competiton between patients.

"Even waiting three weeks to see an oncologist is cruel for the patient , knowing that the professionals know what is wrong with you, whilst you, the person concerned, are kept in the dark."

It is most unsatisfactory to wait so long for a first appointment or for a treatment-planning test result. The reason why you might have to wait is that you are competing with other patients. Some have not had any cancer treatment before. They are beneficiaries of the cancer waiting time targets which trump everything else in the competition; that's how targets work.

Patients, or their relatives, who have the pushy, confident nature associated with living in a posh area, will 'phone the consultant's secretary and negotiate bringing the appointment forward; they are the active competitors.

Oncologists can create some extra capacity seeing fewer patients for post-treatment followup. I personally find this a difficult judgment to make. Diagnosis of recurrent cancer can be as hard for the GP as diagnosing new cancer.

We certainly need more capcity in our cancer services so that patients do not have to compete so hard to gain access.

Time for radical change to shift power to patients

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