Time for radical change to shift power to patients

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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_

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Comments

Jeremy Taylor

Position
Chief Executive,
Organisation
National Voices
Comment date
15 November 2012
Thanks for this very powerful piece, Christine. You very eloquently make the point that legislation can’t deliver good care. Nor for that matter can re-organisations, tariffs, strategies, policies, targets, outcomes, ICT, regulation, “commissioning” or even money. These are the things that policy makers obsess about, and they can make a big difference if they all pull in the same direction. But in the end it’s people that deliver care and we need to spend more time thinking about how we can support and encourage care professionals to work in real partnership with patients and their families, and with kindness and compassion.

Stacey

Position
PhD student in the NHS,
Organisation
www.planningforprotons.co.cc
Comment date
15 November 2012
I agree and feel that this is more than just an idealised view of healthcare, but what many people hope that the NHS could become and what its original values stood for. There are many workers in the NHS that joined because they want to help people, be part of some larger organisation that holds the same values as they do and be the best they can be for the patient. This goes to more than just doctors, but also nurses, scientists, admin, orderlies etc. The way the NHS is currently being run can make it difficult for the staff to put the needs of the patient first. This is not only bad for the patient, but the staff who are not fulfilling either their potential or their own aspirations as a care giver. This in turn may lead the staff to feel unhappy, alone and unsupported in their NHS job. In a workforce that is driven more by internal motivations such as the sense worth they achieve from helping another person over personal finical gain (well I like to hope) it is essential that this motivation is not lost to ensure the success of the NHS and what it stands for; to give the best care we can to everyone who needs it.

Andrew Craig

Position
Engagement practitioner,
Organisation
Moore Adamson Craig Partnership LLP
Comment date
15 November 2012
Jeremy is quite right. It is down to people (call them health care professionals) wanting to do things differently and better. We can't whip them into it and dropping the Act on them will only result in fractures. Patients should try this mantra on receptive clinicians. Look them in the eye and say, “I'm the expert on me. You're the expert on [condition]. I want you on my team; you need me on yours. So let's work together to figure out a care programme that works for me as a person with a real life who is also living with [condition]“ Worth a try?

Peter Durrant

Position
Retired development worker,
Organisation
realife.org.uk
Comment date
15 November 2012
Splendid to see a change of direction but why do we not change our bad nomenclature habits. 'Patients' especially and when I started social work, as an example, people with various forms of learning disability (which includes all of us) were described as idiot and imbecile. What we do, every time we describe people as nameless individuals is to negatively reinforce and deny status, individual worth and the right to particpate in one's illnesses. Especially in medicine..

Jessie Cunnett

Position
Director,
Organisation
Patient and Public Involvement Solutions
Comment date
15 November 2012
Thank you Christina - very well said. It reminds me of the following quote. 'Many of the procedures that I heard about seemed to me to be self-serving – supporting the needs of the organisation, rather than the public they are set up to serve.’ Lord Lamming, Report of the Victoria Climbié Inquiry 2003. Nearly 10 years ago... We could do more to remain focused on the people, without whom there would be no need for policies and procedures. With so much change and potential for deckchair re-shuffling there is a constant risk that priorities become skewed. A timely reminder.

Kath

Comment date
15 November 2012
Thank you Christina!- we need more voices like yours to be heard. For too long the divide has been ever so- the patient is a number, a disease, a page from a textbook or an unusual condition. The person is forgotten, merely left at the front door of the GP surgery or the hospital. As someone who has worked with patients and has recently experienced being one, I am still appalled that patients are treated in such an off hand and patronising manner. It seems that it is still the case the higher you go within the medical hierarchy the more unable you are to communicate, empathise or truly support the patient as an individual human being. We should be thinking outside the box to look at new ways that health and social care can work together and provide support and care to people in need. Can we please stop stamping our feet and saying we refuse to play just because we're being faced with a few different rules.

Craig Wakeham …

Position
GP,
Organisation
Dorset
Comment date
15 November 2012
I'm one of the healthcare professionals it has become fashionable to 'bash'. I whole-heartedly agree that we need a partnership and that this has to be about collaboration. Power struggles only lead to winners and losers; we both (all) need to be winners. I found the following many years ago in a support document for the Diabetes NSF:
It is not always the case that people are unwilling to change but they may be unwilling to be changed.
If advice is framed from the health professional perspective and not the patient, the patient may perceive the recommendation to be inappropriate for incorporation into their life.
Lack of change is often attributed to poor compliance, but blaming or labeling a patient as non-compliant may damage self-esteem and create a barrier to future behavior change.
Non-compliance could be described as two people working towards different goals.
When patients do make changes using the compliance approach, the change is often externally motivated, i.e. carried out solely to please the health professional, as such the effect may not be long-lasting.
I believe that this works just as well if we transpose patient and clinician.
There is another area I think we need to explore, and this is true systems thinking. One of the mantras of systems thinking is: For every pound of data you get an ounce of information, for a pound of information you get an ounce of knowledge, a pound of knowledge gives an ounce of understanding, and a pound of understanding leads to an ounce of wisdom. We acquire knowledge but have to develop understanding so that we might act with wisdom. I would also add the following hierarchies:
Instinct, emotion, empathy, compassion and enlightenment.
Materials, products, skills, talent and creativity.
I was also given a copy of Ian Kennedy’s Reith lectures from 1980 a few years ago, when the same concerns were expressed, albeit with a little more balance. Ivan Ilich’s medical nemesis from 1975 was another text that warned of where we were going, as did Balint’s seminal text from the 1960s, when he described the ‘collusion of anonymity. These are only a fraction of the warnings that have been sounded but we continue to give power and authority to politician’s who seem ignorant of all of this wisdom.

Paul Nuki

Position
Chief Editor, NHS Choices,
Organisation
NHS Choices
Comment date
15 November 2012
Excellent post. The big question for me is how (now all seem agreed that we need a patient first system) do we raise the customer service levels in the NHS in the ways you talk about. It’s a terrible thing but as technical medical care has improved, vital things like politeness and compassion have faded. It’s something that needs v specific and direct attention - and it's not all to do with nursing.

Tim Benson

Position
Chairman,
Organisation
Routine Health Outcomes Ltd
Comment date
15 November 2012
The analogy with children is good. We would not dream of choosing a school that did not each child continuous feedback on their progress nor send us detailed reports that we could understand. Routine feedback needs to be built into the system at every level. The Friends and Family Test is a start, but we need to be much more resolute in the roll-out of simple generic measures for monitoring both health status (outcome) and experience across all settings, and publishing the results at team and principal level.

Jason Maude

Position
Founder,
Organisation
Isabel Healthcare
Comment date
15 November 2012
Part of the problem is the power and/or knowledge differential between the patient and doctor. We have just made our powerful symptom checker available free for patients at symptomchecker.isabelhealthcare.com to help patients narrow this gap. With this tool they can get much more involved in researching their diagnosis and the appropriate tests and treatments.

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