Time for radical change to shift power to patients

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.

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.

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?

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..

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.

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.

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.

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.

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.

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.

Little thought from third year student. Nursing as a profession is still a great career, with varied opportunity options in your career path to experience. I think a little more care could be demonstrated to personnel in the NHS. Yes we know it needs to improve and change, and be fit for purpose in the 21 st Century. It also needs to remember caring professions need the right personalities to deliver care, who feel they are working in the caring profession, valued,respected. Lets bring back teamwork not destroy it, and lets show we all care.

I’m afraid Christina Patterson’s view of hospitals is a little simplistic but her thought about the need for a partnership is spot on. In the mid 1980s the NHS was organised around the general practitioner services in a Health District working with the services provided by a hospital – a District General Hospital – and with the local authority social services. To make this easier, the Health District and the local authority were, if possible, coterminous, that is, they shared the same boundary. By his or her familiarity with this arrangement the patient entered into a partnership with a clear relationship with a particular GP.

Whilst there have been many useful developments in health services over the last 25 years that have influenced this, the system was damaged by the reorganisation overseen by Kenneth Clarke which drove a wedge between GPs and hospitals to split them into ‘purchasers’ and ‘providers.’ This was compounded by the way this was presented to the public by politicians talking about fundholding (now commissioning) GPs purchasing operations from hospitals. This is carried on in Ms Patterson’s view about hospitals being places to go for operations; they are and need to be much more than that.

Hospitals are also the place where specialists in diagnosis are located. Frequently the diagnosis of cancer, my specialist area, is difficult; the patient with colonic cancer, lung cancer or ovarian cancer does not have an easy-to-feel lump and to diagnose these cancers many more patients with the vague symptoms these diseases present to be assessed than actually have the disease. In fact I put the symptoms cough, breathlessness and chest pain into Isabelhealthcare.com. These are the commonest symptoms of lung cancer and this diagnosis didn’t even come up in the top ten!

The NHS needs more resources to be put into cancer diagnosis and the other thing about hospitals is that they gather outpatient clinics, endoscopy units, laboratories and scanners under one roof. Independent diagnostic centres can do that but hospitals assemble multidisciplinary teams including the heroines (and occasional heroes) of NHS cancer services, the Clinical Nurse Specialists who are invaluable in establishing continuity of care and developing the partnership with the patient; what does Ms Patterson think of her Breast Care Nurse? That team can help with other diseases; some patients being treated for cancer also have diabetes… Oh, and hospitals are also the place where cancer operations take place.

In fact for people who reside in poorer areas a high proportion of cancer diagnoses come after an emergency admission to hospital. From my own research it seems that the socioeconomic disadvantage in getting access to cancer care applies to as much as a third of the population. A major role of the hospital is that of Healthcare Provider of Last Resort. The only way to reduce their use as such is to enhance out-of-hospital services so that patients can know that they are there and that they can easily be accessed.

Keeping people out of hospital when admission is not necessary is without doubt a good thing. For a patient with advanced cancer and a limited life expectancy any day spent inappropriately in hospital is a wasted day. To support such people in their own home requires sufficient community-based professionals. A sad indictment of the Department of Health’s failure to develop services comes from what I thought was the most significant fact in this week’s news from the Royal College of Nursing about reduced numbers of nurses in the NHS; the number of district nurses has fallen sharply. If people cannot be supported in their own home they will use the Provider of Last Resort.

The drive to use of community services and not hospitals requires that potential patients’ hearts and minds are won for that cause. The failure to achieve this was clearly evident from Matthew Parris’s column in The Times on 16th June. He agreed with the practice receptionist that he should bypass a consultation with the GP to take his sore wrist straight to the emergency department of the hospital for an X-ray and argued that GPs would eventually be phased out. To make out-of-hospital services more acceptable, and especially to achieve Ms Patterson’s aspiration for appointments tailored to the patient’s convenience requires spare capacity to allow flexibility. But spare capacity in the thinking of the NHS is waste.

Above all one fact is fundamental in the underfunded healthcare system, so much so that it should be emblazoned on the King’s Fund website masthead. The NHS is a competition between patients for resources.

Reading that blog broguht the hairs on my neck up - not in anger but in thinking, "Oh good! I am not the only one who thinks like this"

I have always insisted that patients are our customers and NOT end users who ought to be grateful for what they get - they are customers that have paid for the service not over the counter but just the same as those with medical insurance but who pay the government rather than an insurance company.
The other point is that I agree wholeheartedly in having local (by that I mean local to my town or village or neighbourhood) where the more minor things and the lefelong problems can be catered for and obvuiously dementure could be one of those lifelong things we all must deal with.
Why ask X number of people from, say Haverhill in Suffolk to go to the West Suffolk Hospital for a consultation when one consultant can come to Haverhill?
There is no actual evidence that centralising services is cheaper however, thier is evidence that specialsising in a particular service or number of services does have benefits - Morrfields Eye Hospital is an example so why not place a speciality into a small to medium sized DGH instead of trying to ram all specialities into one larger Hospital?
That is it for now!

Excellent piece - "no decision about me without me" - if that is to be true then the future design and delivery of services has to include patients from the very beginning. Patient Leaders - not Expert Patients - are needed to advocate for not only their condition, but the area/locality in which their treatment/service is delivered

I agree with you Christina. All professionals should just experience being on the receiving end and see what it's like for patients. Currently on unpaid leave looking after my terminally ill husband has revealed just how unkind and lacking in compassion some ( but thankfully not all) staff are. 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. Targets are not just everything, but that is what drives most NHS services these days. it's time patients were in in the driving seat. My project is about just that : People Powered Health. Time for a complete change of direction.

I've now worked in the NHS for three years and from day one heard about the need to empower patients and a new relationship between patient and practicioner. And of course there are many empowered patients out there working with clinicians, but I fear they are in a minority, and i sincerely hope there will be many more in the future. But it is human nature to follow the 'if it ain't broke don't fix it' rule ie only go to the doctor when you are ill. Just like you only take the car to the garage when there is a problem or call a plumber when the boiler breaks down. Same with health. And if primary care is overwhelmed with ill people, heavens knows what will happen when healthy people get in touch too for a regular check up and service. What's the answer? Has to be a combination of carrot and stick because that is how we got people to wear seat belts and stop smoking. And more services in the community, so people can be treated locally and empowered to look after themselves, so that hospitals can look after the seriously ill.

Patient partnership allows much improved efficiency of investigations and tailoring of treatment but does require a change in approach from both doctors and the NHS management. In my experience the main requirement for a useful partnership is a good understanding of the illness by the patient and a good understanding of the patient by the doctor. Both depend on more time spent together and this can only be achieved if it is recognised as a key quality issue in the NHS. The drive for "efficiency" puts great pressure on NHS managers to find every possible alternative to this single most important process - the doctor-patient relationship: the time has come put it at the top of the priority list so that a meaningful partnership can work.

It may not be surprising that Dr Crawford, as a cancer specialist, expects to see lung cancer in the top 10 for a presentation of cough, breathlessness and chest pain. It is actually 11th but there are other more appropriate suggestions higher up such as COPD, asthma, pneumonia etc. The great advantage of tools like Isabel is that they are objective and not subject to the natural biases of specialists and, therefore, are a very necessary complement to their skills.

Based on my experiences as a patient, I agree that a partnership – perhaps between ‘Service User’ and ‘Service Provider’ – would be good, to establish roles and responsibilities. However, I do have a chronic condition (psoriatic arthritis) that would ensure my commitment to the project; healthier types might not prove so keen – ‘if it ain’t broke, don’t fix it’, as Duncan notes.

Maybe the partnership model could take effect from the moment of diagnosis of particular illnesses, indicating clearly all parties involved. For me, that’s myself, my GP, my surgery’s district nurses, my rheumatologist, the nursing team at the rheumatology department, my physiotherapist, my occupational therapist, etc. If I were to receive a further diagnosis or require hospitalisation (both occurred last year), a new agreement would be drawn up to include all new members of my team. During two decades of treatment I’ve noted healthcare professionals’ tendency to criticise ‘the system’ for failing to define precisely their role; it’s time to enable an era of improved efficiency, to everyone’s benefit.

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.

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.

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

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.

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.

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...

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.

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.

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.

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.