April 2001
Journeys of care: The present
There are unacceptable variations in practice and in the delivery of journeys of care. The public has become increasingly well informed about misadventures and malpractice through the press, telecommunications and the internet. Soon the public will no longer tolerate "journeys of care" which are something of a lottery, that might be successful, might involve "near misses", or preventable disasters and unnecessary delays. Nor will funders in government or as insurance payers accept processes of care that are not evidence based and cost effective. Public confidence in health services has been eroded and requires to be regained.
Working practices have moved from those of just a few years ago to the present unsatisfactory systems of partial shifts, discontinuity and fragmentation of care. Today in the UK in some hospitals an inexperienced junior doctor may be required to supervise overnight up to 200 in-patients whom they do not know. Senior doctors are extremely stressed and are retiring early. Manual case records are chaotic and disorganised. Sharing of information across the primary to secondary care divide is inefficient. Most clinical information systems are rudimentary.
Are there important variations in practice?
In diabetes care many regions or practices do not maintain registers of diabetic patients. Local policies are variable in respect of eye, foot and cardiovascular examination. Similarly there is variation in policies for the measurement of glucose, glycosylated haemoglobin, microalbuminuria, lipids and blood pressure. Care of adolescent and pregnant diabetics is not always structured. Is this a satisfactory situation?
Stroke patients are disadvantaged in many areas that have no organised system for stroke care or for early swallowing assessment despite the high levels of evidence that show unequivocal benefits to such patients. Is this acceptable?
The care of heart failure patients is also suboptimal. The severe grades have a worse prognosis than some types of cancer yet audits show that evidence based therapies such as ACE inhibitors, diuretics, beta blockers and spironolactone are not being optimally delivered. Why?
Implementation of prophylaxis against deep venous thrombosis in patients admitted to hospitals is inconsistent despite the overwhelming evidence of beneficial effects on a reduction in preventable mortality. This is not a safe journey of care! The rule of halves continues to operate in hypertension care. Only half of the patients are diagnosed, only half of that group is treated and only half of those adequately. Is this good for the patients or for the prevention of stroke? Lung, colorectal and breast cancer care is variable. Long delays may occur before being seen by a specialist who may be a physician, surgeon, oncologist or radiotherapist. Delays may also occur during cross referrals. In some recent instances in the UK the delays have led to the tumour becoming inoperable. The variability in the patients journeys lead to unacceptable variations on outcome. Patients awaiting emergency admission to hospital wait on trolleys for hours due to bed shortages caused by delayed discharges and lack of forward planning. This is totally unacceptable and finally awakened the UK government to the crisis in the NHS. I will not go on.
The journey of care: Who are the players?
Everybody, Somebody, Anybody Nobody!
There was an important job to be done Everybody
was sure that Somebody would do it
Anybody could have done it but Nobody did it.
Somebody got very angry because it was
Everybody’s job.
Everybody thought that Anybody could do it
but Nobody realised that Everybody wouldn’t do it.
It ended up that Everybody blamed Somebody
when Nobody did what Anybody could have done.
In the design of "quality" journeys of care clear guidance and definitions of roles of several players are required. Otherwise confusion and discontinuity will result.
Who are the key players?
The patient and carer want accessible, intelligible, plain English "gold standard" information. This information should be free of advocacy and commercial overtones. By strengthening and empowering patients and informing public debate expectations of the health service are raised.
The multi-professional health professionals involved in team working, including nurses, pharmacists and professionals allied to medicine require agreed guidance as to the objectives of care, the methods to be used and the outcomes to be measured.
Specialists require to discuss and agree "best practice" with colleagues in allied specialties who are also involved in the journey of care. Monospecialty tunnel vision that does not take into consideration the views and evidence base of other specialists, for example radiologists and clinical chemists, will result in sub optimal journeys of care. There is a need to "work together".
Primary care physicians are the principal life time carers of patients. Agreement with secondary care practitioners on referral and discharge practices including shared care arrangements are essential, particularly with the shift in the balance of care away from secondary and tertiary care as with the care of diabetes and hypertension to primary care.
Finally the key players include management. In the UK the internal market caused managers to focus on the financial "bottom line" and not on the quality of the service being delivered. Clinicians and managers became disconnected and confrontational. The connecting rods were lost.
The journey of care: The levers
The urgent problems are to regain the confidence of the public and to restore the morale of the professions. Some managers and politicians favour a 'big stick' approach. This leads to resistance, opposition and tension in health care workers who in the UK already feel under major pressures without added political imperatives, sanctions and burdens.
The "bottom up" approach allied to "carrots" allows changes in practice to be professionally led. Ownership is gained as valid and valued guidance is developed. Peer pressure can be applied to obtain behavioural change.
A combination of "top down" and "bottom up" approaches is required and the Royal College of Physicians of Edinburgh has attempted to suggest and co-operate with pragmatic solutions - or levers - to the pressing problems.
The first lever relates to evidence based guideline development. The College has led a process of evidence based guideline development through the Scottish Intercollegiate Guideline network (SIGN). The topics are closely aligned to national priorities for "journeys of care". The guidelines are developed using a methodology (now internationally accepted) which requires multi-professional input, a systematic review of the literature, and graded recommendations based on a hierarchy of evidence levels. Minimum data sets are suggested which increasingly form the basis of audit and information technology initiatives. Forty-six SIGN guidelines have now been published but alone do not change practice and other levers are required.
The second lever is the evolving process called clinical governance. Government has charged the Chief Executives of Trusts with accountability for clinical quality. The availability of professionally owned and valued SIGN guidelines facilitates the setting up of local procedures by clinicians and managers for the delivery of clinical governance (eg diabetes, stroke, coronary artery disease etc) in the Trusts. Through the processes of clinical governance there is an expectation that risk management procedures will identify failing services and dysfunctional doctors much earlier than in the past and nip problems in the bud. Earlier correction of deficiencies should also attenuate adverse publicity. A third lever is external quality assurance by the recently set up Clinical Standards Board for Scotland (CSBS). This statutory independent Health Authority has over 50% of its Board as non Health service members. The Board has already started to visit Trusts to review local services (eg cancer) against defined generic and specialty specific criteria that have been principally derived from the SIGN guidelines.
Prior to CSBS visits the Trusts are invited to prepare a self- assessment document for scrutiny by the CSBS teams. The results of the CSBS visits will be available to the public. In England a similar quality assurance body has been set up - the Commission for Health Improvement (CHI) - again as a Special Health Authority. The methods to be used by CHI will be more those of a semi-punitive inspectorate that those of CSBS. CHI will concentrate on clinical governance issues in "red", ie problematic, rather then "amber" or "green" ie non- problematic Trusts. A fourth lever which is again under very active and controversial discussion relates to the proposed five-yearly revalidation of doctors by the General Medical Council. Clinicians will be expected to complete a personal folder in which details of continuing personal development, personal development plans and participation in clinical functional services will be recorded. The trick will be to integrate revalidation of doctors with the external quality assurance (CSBS) and clinical governance processes. Otherwise there will be "paralysis by analysis"!
The fifth lever, referred to earlier, is the empowerment of patients. By making the guidelines, such as produced by SIGN, available to the public in accessible language, and on the internet, there will be major pressures to improve the funding of health services and the quality of the journeys of care. The involvement of patients and the public in developing SIGN guidelines, and in the work of CSBS and Trust Boards is a very powerful tool to make the problems in the delivery of services at a local level explicit. These five levers need to be intelligently ratcheted up over a feasible timescale. And the different players need to work together. By combining the levers safe ‘Journeys of care’ are more likely!
And finally
Levers that are being put in place at present to deliver a "quality" journey of care for citizens will result in increased staffing and resourcing of health services and release the time of individuals to deliver the journeys of care that all aspire to. Such an increase in funding has recently been announced in the UK, acknowledgment that the NHS was under-resourced and that health professionals were not crying wolf.
Once the levers are in place the public can then be more reassured of the safety of their journeys of care, and the paymasters of the cost effectiveness of the journeys. A move is essential from the gentlemen players of the past to accountable, evidence based and transparent "Journeys of care".
I believe that the Royal Colleges and Academies of medicine across the world, working with specialist groups, managers and patients have major roles to play in setting the standards.