Failure in First Contact Care: A Barrier to Integration

This morning I was sitting with another ten patients in my GP practice when a very agitated young man in a hoody came in shouting and demanding to see a Doctor. He accused the Receptionists of taking him ‘for a ride’ of ignoring him on the phone for 20 minutes at 10p a minute.

As it happened one of the partners came past the desk. The young man now screamed at him: I need to talk to you, he grabbed the Doctor’s shirt. The situation could have gotten very ugly, Police, custody the lot… As it happens this Doctor is very good and experienced he diffused the tension, he ignored procedure and made an appointment available.

Most likely the young man has mental health issues BUT even more likely he really did need to see a Doctor and he knew it, but no one would listen. The system was uninterested, he was too much, too much need at the wrong time in in the wrong place. A few minutes earlier I saw the receptionist put him on hold ignoring him on the phone and commenting on doing so.

And I also know that the receptionists had little room to manoeuvre and that averting patients who think they need to be seen is in the job description and that the skill to tell people they can’t have what they think they want is fundamental for a receptionist’s survivor.

And I also know how that young man feels, that even I who is on first name terms with the staff, who have known the Doctors professionally for decades, who knows all the inns and outs of how the system works and how to make it work for me often feel like that young man banging the desk, because although the rhetoric is of the GP gatekeeper coordinating care the reality is that there is very little capacity to coordinate anything.

The Primary Care System is seriously broken and needs urgent consideration. Integration depends on Primary Care working well, on the capacity for the system to see people—like the distressed young man—w hen they need it. There is no capacity there is NO functioning system. Integration will not magically save a struggling Primary Care System, it can’t. Pretending that it can will only further undermine trust in the NHS as a system.

In the hope to contribute to the development of a more nuanced policy discussion on the barriers of integration rooted in practical reality below is

  1. Research evidence of the failure of the current system.
  2. Theoretical Challenges to the current model.
  3. And Cross-European  Comparison

 1. Evidence

 Evidence a):    Preventable Deaths in Children under 14

In her sobering presentation for the Royal College of Paediatrics and Child Health  on ‘Why Children Die?’ Dr Ingrid Wulf highlights the direct correlation between inadequate first contact i.e. GP care and the dismal outcomes for especially deprived children in the UK .  More children under the age of 14 die in the UK of preventable causes than anywhere else in Western Europe, five times more than in Sweden. The main cause for these deaths (along with preventable accidents) are treatable infections such as Meningitis and Pneumonia and to an even larger extent badly managed asthma.  According to her research the lack of timely access to expert first contact care lies at the heart of these shocking figures. A health system ruled by the tyranny of the urgent (as she phrased it) creates enormous barriers to integration.

And the current policy has yet to start thinking about what integration would mean for children’s services and thus for GP care.

The failure to address these systemic problems has a measurable and devastating impact on the youngest and weakest in our society. In a nutshell for children from poorer background (the death rate is correlated to deprivation) the barrier to first contact care are too high, so high that some of these children die because of lack of effective treatment. These are children who under the care of an other health systems might have lived.

You can of course blame the parents but anyone who has ever tried to get a GP appointment for an ill child (e.g. in London) will appreciate the level of persistence and assertiveness if not outright pushiness required to be seen in busy periods.

 Evidence b): Routes to Cancer Diagnosis

A further indication that within the existing framework GPs are seriously failing to adequately fulfil their roles as gatekeepers can be found in the National Cancer Intelligence Network’s 2012 study on ‘Routes to Diagnosis’, according to which 24% of all cancers are ‘Emergency Presentations’ diagnosed in a casualty setting, and an alarming 59% of these are diagnosed in A&E. The survival rate for these patients is far worse than for those diagnosed by a GP and again these figures are higher than in other comparable countries.

These patients should have been diagnosed in primary care, thereby significantly improving their chances of survival (and possibly increasing the cost of their care to the system).  Unless it is a stated health policy that we ration care for more deprived cancer patients by restricting access to early diagnosis and thus more effective treatment these figures ought to ring alarm bells and invite a radical rethink of first contact care and the mythologised gatekeeper role of GPs.

Few of us would find it acceptable to be presented with a cancer diagnosis in an emergency setting so why should we accept it as a given for 24% of cancer patients?

The reality of the GP’s role in this context is less that of a benign gatekeeper and more like that of an armed guard preventing the raiding of a precious (and scarce) resources. And again the figures show that it is the more deprived section of the population who are disproportionately prevented from accessing appropriate care. There are clear indications that better off, middle class patient circumvent the GP gatekeeper via an early diagnosis in private clinics. In turn their outcomes are comparable to those patients diagnosed in Primary Care!

 2. The ‘needs’ and ‘wants’ muddle or why is self-care = less care?

These two studies highlight the public health implications of the current system’s failure to enable GPs to effectively fulfil their role. Furthermore they highlight the inherent tension in the gatekeeper’s role underlying this failure.  E.g. if we wanted to successfully address the issue of Emergency Presentation of Cancer we would need to aim for far more people attending GPs far more frequently. We would need a public health campaign encouraging the population to visit their GP’s at the earliest sign of concern.

A fundamental tension emerges: The GP gatekeeper is by definition at once tasked with rationing care for all patients AND with ensuring easy access to the best, clinically most appropriate care for individual patients, an impossible challenge.  In the integration debate it is often implied that by following clinical evidence these two functions can be aligned. Thereby choosing to overlook that GPs role in deflecting ‘unreasonable demand’ (from patients) and their ‘magnanimous’ role in supporting the (same) patients to self care and access services are in inherent conflict.  Unless we believe that self-care by definition can be equated with demanding less care we are requiring GP’s to be Dr Jekyll & Mr Hyde in the same consultation, all at once. In the case of early cancer diagnosis it is very obvious that self care requires far more care!

Although the Health & Social Care Act has brought this tension to the forefront (probably the only good thing that has come out of it) it was lurking in the bushes long before.

The underlying argument implying that there is an easy to define boundary between genuine ‘needs’ and unreasonable ‘wants’ and that clinicians are the best arbiters of this boundary on behalf of their patients is at once patronising and philosophically sloppy.  How can GPs be independent arbiters of their self-caring, autonomous patients’ ‘needs’ and their consumerist ‘wants’? Even in a simple case such as a fractured bone it is difficult to know where the line between needing and wanting physiotherapy lies and it is fair to argue that in the current system patients’ are far more likely to be denied access to their ‘needs’ than pandered to their perceived  ‘wants’.  The literature on Patient Centred Care correlates high quality clinical care with well informed, well supported, independent and thus by definition demanding patients! You can’t at once promote Patient Centred Care while peddling the myth of unreasonable ‘wants’.

Enabling patients to make well-informed decisions and to better understand their own needs inherently means providing them with more and better (higher quality) information. Offering information provided by a skilled practitioner surely increases rather than reduces demand on the system.

Clarity about the GP’s role and the expertise and organisation needed for effective First Contact Care is crucial for sustainable quality improvement. The alternative is a continuous destructive muddle.  Considering that 90% of the NHS workload is in Primary Care with an explicit policy aim to increase that work load, combined with very little frank discussion on the practical implications of these policies, it is imperative to better understand the tensions between encouraging autonomy and thus demand if it is to have even a fighting chance of standing up to the reality test. The success of the policy won’t be determined on paper by persistently peddling myth but in successful day-to-day implementation. Continuing to pretend that it is possible to ration care fairly while ensuring good access for all is disingenuous and this misleading rhetoric continues to undermine the reputation and implementation of health policy. Perpetuating this myth fundamentally undermines trust in the system and consequently it undermines (and has undermined) the system itself.

3.  Experience

This tension of rationing care while promoting self-care is of course familiar to all health care systems. Health Care Systems which rely on a market model understandably encourage ‘want’ for those able to pay while ignoring the needs of those unable to contribute leading to unequal outcomes. Than there is the German model which encourages want (to increase profit for the private providers) but at the same time is based on a public consensus that demands access to care to all legal residents!

E.g. the idea that you call up your GP practice (Hausarzt) and can’t get an appointment for the same day is unheard of in Germany. The situation with the young man just wouldn’t have happened there! He would be seen without shouting, without hanging on the phone for 20 min. The receptionist’s role would have been to make sure that he is seen .Her role would be to make sure everyone is seen (how satisfying that consultation is, is another matter, but you are attended to). And of course there are far more Doctors per head to do the attending. If patients even remotely had a sense that their Doctors are preventing them from accessing care, which they think they need there would be a minor revolution. There are many things fundamentally wrong with the German Health Care System but these are not in accessing first contact care.

Although not explicitly the German approach acknowledges that you the patient are the best arbiter of what you the patient need. Nowhere is this more evident than when it comes to Children (and this shows in Dr Wulf’s dismal statistics).

In conclusion here is how an attentive First Contact Care has made a huge difference for me as a parent – the one role in my life where I relied on the health care system for support and guidance.

Our 18 year old daughter was born in Berlin.   We were young, only 23 and 1000 km from our families. As for all new parents looking after a fragile little thing it was daunting. She projectile vomited daily, didn’t poo for two weeks and at four months had 40o fever and coughed her little heart out. We needed and wanted advice and our Hausarzt provided it. We knew that we could call any time, that when Zoe was suffering with an infection the doctor would call up (unprompted) and check how things were progressing. We knew that Frau Dahmen was available for us. And we felt reassured and grew into confident, well supported parents of a little girl.

Ten years later Eden was born in London. And even though I have one of the most amazing GPs the experience has been very disheartening. We were older, wiser and should have been more confident but instead it felt that every request, every appointment, every concern was an imposition a burden on the system, that there are others who need the sevice much more and that mostly things will be just fine without our fuss and attention.

We are lucky both of our girls are healthy children, and yes Eden grew out of her Glue Ear, her Sleep Terror, her Febrile Convulsion, her Hernia and at last has a healthy weight just as her older sister. But the constant state of feeling alone with it, the sense of making an imposition, that we are the worried well, making unreasonable demands on an already overstretched system, undermined our confidence and judgement, as did the administrative mix ups, the Health Visitor who we never saw, all that made it obvious how easy it is to fall between the holes in the net.

Because Germany has a structured paediatric screening programme  all children and not just ‘nice’ middle class kids with over anxious parents like us are seen by a Doctor on a regular basis well into their teenage years. Our experience as parents in Germany is fairly typical, as I assume is our London experience.

It is difficult to calculate what the support we were provided with as young parents in Berlin cost the health economy or how many pounds in turn were saved by the NHS.

But for us the support mattered. It made a huge difference in how we coped and how we parented. The value of support and attention is difficult to measure BUT support and attention is the true currency of First Contact Care.

Can you put a figure to it?  With Zoe we attended  A&E on one isolated occasion. With Eden we attended once or twice a year, mostly at times when she had a severe infection – an infection which could and most likely is harmless but which at rare, difficult to recognise,  occasions is exactly the kind of infections of which children in the UK die. We were always apologetic when we turned up in A&E, felt guilty for using up resources, but being the assertive proactive meddling kind of parents when feeling unsupported we sought out what we thought we needed.

The underlying assumptions permeating through the current NHS culture that by discouraging the worried well (like us) a new integrated service will magically free up more resources for the really needy are disputed by figures.

The needy are easier to discourage. They are less visible. They die of treatable infections.

Today, again, a child, failed by the system is in the headlines, the third within a week. A child who had visible signs of neglect and maltreatment, a child living with a parent incapable of caring for him, a child who was failed by many institutions but who was also failed in first contact care, by the superhuman Gatekeepers struggling to negotiate wants and needs and conflicting demands?

It is time to rethink Primary Care, time to make it work for patients, for the population, for children and not least for GPs themselves. Dismantling the myth of the Gatekeeper is an important first step! Then we need to focus on developing better ways to understand and measure what really matters to patients, understand the real value of care and attention for our well-being, followed by a frank discussion of what we are prepared to pay for it. We need to start thinking about our integrated health service as an indispensable infrastructure like a perfectly managed public transport system.

“A developed country is not a place where the poor have cars. It’s where the rich use public transportation” Enrique Peñalosa.

An integrated is health service is one where the bus stop is not too far. The drivers are friendly and competent. Where you feel safe and know that you are a cherished person not just another burden on the system.

noemi fabry for Institutional CUREiosity