Appendix 2 - Evidence in Support of Treatment Time Guarantees
Delayed treatment for some cancers increases the risk that it will spread. There are a number of clinical studies that have looked at the relationship between longer waiting times and impact on patients. Kulkarni (2009) examined the impact of waiting for surgery for bladder cancer. Longer wait times led to a lower survival rate and that patients with less invasive disease may be at relatively greater risk through waiting. Saad (2006) and Jewett (2006) looked at the impact of patients waiting for prostate cancer and for urological cancers. Chen, King and Pearcey 2007) looked at waiting times for radiotherapy and concluded that long waits may lead to decreased survival and risk of local recurrence. Waiting times for radiotherapy should be as short as reasonably achievable.
Currently Scotland sets a 12 week maximum wait for Outpatient referral with a 5% tolerance. Performance is at approximately the 90% level with just under 40,000 Outpatients waiting over 12 weeks and 10,000 Outpatients waiting over 16 weeks. Long Outpatient waits can delay diagnosis and treatment and can be devastating for individuals and their families. One of the most important aspects of having a relatively quick Outpatient consultation is that between one-third and two-thirds of our cancer patients in Scotland come through a standard Outpatient referral process and not the urgent cancer pathway. For example, 60% of Urological cancers, 60% of head and neck cancers and 60% of melanomas are detected at Outpatient clinics rather than through the urgent cancer pathway.
There are a number of studies that look at the link between long waiting times and patient safety in relation to cardiovascular conditions. Koomen (2001)Natarajan (2002), Rexius (2004), Talwar (2005) , Sobolev (2006/2008) found that long waits were associated with potentially preventable myocardial infarction, long waits for surgery caused mortality risks for patients to increase by 11% per month after acceptance for treatment and extended delays carried significant risk of death (even for low severity patients).
The number of joint replacements (hips and knees) has increased in Scotland over the course of the past 10 years. With a growing elderly population we anticipate growing demand and growing pressure on services. A number of studies have looked at the length of time waiting for joint replacement and clinical outcomes. Garbuz (2006), Davis (2008), Vergara (2011), and Desmeules (2012)found that each additional month waiting for treatment was associated with an 8% decrease in the odds of better than expected functional outcome (for Garbuz waiting longer than six months was linked to a 50% decrease in functional outcome) and that delaying treatment may result in deterioration that may not be recoverable after surgery. Patients on extended waiting times had increased pain and disability compared to those that endured shorter waits, functional capacity gain was poorer for patients who waited longer than six months for surgery. Other studies Johansson (2010),Mahon (2002), and Ostendorf (2004) looked at the relationship between pain and functional limitation and waiting times. Interestingly there appears to be mild consensus Hoogenboom (2009)that there is some evidence indicating that functional status does not deteriorate significantly up to about six months for joint replacement surgery (though Hoogenboom also recognises that from the patient perspective there are economic and quality of life arguments for a shorter wait time than six months).
Condition Specific Targets in Scotland
Some years ago the Scottish Government launched the HEAT targets for hip fracture with surgery set at a defined maximum period of 24 hours at an appropriate unit. Among elderly patients hip fractures are associated with an in hospital mortality rate of between 7-14% and profound and sometimes permanent impairment and reduction in independence and quality of life. As the elderly population increases the number of hip fractures is also expected to increase annually over the foreseeable future. Current guidelines recommend that surgeons perform hip fracture surgery within 24 hours of injury. Observational studies (Simunovic, Devereaux and Bhandari 2011) suggest earlier surgery is associated with better functional outcome and lower rates of complication and leads to shorter hospital stays and mortality. Each day beyond 24 hours increases the risk of morbidity/mortality.
The HEAT target for hip fracture was one that the clinical community in Scotland (particularly Scottish Orthopaedic and Trauma Society) embraced enthusiastically. One of the largest studies into this area was conducted by Colais et al (2015) where they study the effect of early surgery after hip fracture and one year mortality with an examination of 400,000 admissions for hip fracture. This study found that patients who underwent surgery within a two day period had a much lower one year mortality compared to those patients who waited for surgery for more than two days.
Vision is a key and vital sense and lengthy waiting times for vision correction can take a very serious toll for those in need of care. From a Scottish perspective we have moved from carrying out 26,000 cataract operations per annum (approximately 12 years ago) to just under 40,000 cataract operations in 2014/15. This figure is destined to grow as we have a growing elderly population, almost all in the age bracket 60+ over the course of the next 20-30 years.
Hodge (2007), Conner-Spady (2007), Boisjoly (2010) looked at the impact of lengthy waits for cataract surgery. These studies found that amongst other things that patients who have extended waits experience more vision loss, reduced quality of life and are at greater risk of falls. Individuals with cataracts have more hip fractures and motor vehicle crashes. Long wait times are associated with decline in visual acuity in patients. Those with shorter waiting times had better vision, less difficulty and fewer symptoms prior to surgery and lower rates of accidents/hip fractures while waiting for care. There are also some studies that linked increased depression rates to lengthy waits for cataract operations and other elective procedures.
Very recently the Royal College of Surgeons urged that waiting lists were given priority in Wales. In a "surgical manifesto" published in December 2015 the RCS in Wales said that more needed to be done to tackle deteriorating waiting times which have a huge impact on individual patients. "The 26 week planned surgery targets are not being met and instances of patients waiting over a year for knee surgery cannot be tolerated." ( RCS Wales December 2015)
Accident and Emergency Waiting Times
The Scottish Government has set an interim standard of 95% of patients who wait less than four hours from arrival to admission/discharge or transfer for Accident & Emergency treatment. The Scottish Government website states that although the standards are measured in the Accident & Emergency department the standard requires NHS Scotland to adopt a whole system approach to Unscheduled Care to ensure timely access to services throughout the patient's journey if the standard is to be delivered effectively.
On the Scottish Parliament website the Public Audit Committee concludes:
"There is always a need clinically to balance speed of care with quality of care and we agree with Audit Scotland that waiting times in the A&E Department can be an important indicator of pressure in the health system as a whole."
One of the most important aspects of poor flow in the Unscheduled Care system is reflected in the number of patients having to spend more than 12 hours in Accident & Emergency on trolleys. The Herald (4 March 2015) reflected that in one week alone in the 2014/15 Winter more than 200 people spent 12 hours queuing on trolleys as hospitals ran out of beds. NHS Greater & Glasgow and Clyde's performance against the four hour standard at that point (January 2015) fell to 79%.
There are some mixed views on the desirability of having a four hour A&E target. The Royal College of Emergency Medicine in Scotland clearly support this target, citing cases of people becoming seriously ill with heart and respiratory problems while queuing for treatment in A&Es. However, the Nuffield Trust argues that the four hour A&E waiting time target should be downgraded as it distorts priorities. The Nuffield Trust called for a range of measures over and above the four hour A&E target to give a more balanced picture with measurement suggested for trolley waits, ambulance delays and numbers leaving A&E being seen alongside patient satisfaction surveys. All of these could add a wider whole system measurement approach to Unscheduled Care. (England followed this with more targets for A&E which were added to the existing 4 hour target.)
Plunkett (2011) examined the consequences of waiting times for emergency care to find that long delays from door to team and from team to ward were associated with increased risk of death within 30 days. This trend was across the entire spectrum of patients for those most critically ill to those who felt likely to survive.
The UK Parliament Health Committee Second Report on Urgent and Emergency Services (July 2013) found in an extensive evidence giving session that none of the witnesses argued that the four hour target should be scrapped. There was a broad understanding that it was a process measure and not a clinical quality measure. Cook (2006) found that timely care in Accident and Emergency results in better use of staff and resources and reduced mortality. The end result of reducing delays in Accident and Emergency is that patients are more satisfied and that the workforce is more fulfilled. Delays in Emergency Departments include adverse clinical outcomes, poor staff recruitment and retention and increased violence against staff. Further, a number of polls have consistently shown that delays in Emergency Departments are one of the important areas for patients.
IMAS ( NHS England) found that there is some evidence that the symptoms felt in Emergency Departments with long waiting times led to worst patient outcomes and with a 43% increased rate of death after 10 days. (Richardson 2006). Waiting for admission in A&E is also associated with significant longer hospital length of stay (boarding) on average 2.35 days longer when a patient stays in A&E for more than 12 hours (Liew and Kennedy 2003). Patients with the most severe form of pneumonia have less than a 1 in 2 chance of surviving. Those chances improve considerably if effective treatment is started early. Pine (2005) found that speed of treatment is vital for many conditions. A number of Australian studies have linked Emergency Department overcrowding and long waits with increased mortality. Sprivulas de Silva (2006).
Long waits in Emergency Departments which caused delays to treatment are clearly detrimental to patients with certain time critical conditions. There are a number of studies that show the relationship between time to treatment and adverse clinical outcomes for patients with stroke, heart conditions, fractures, sepsis, pneumonia, meningitis and critical illness (range of references drawn from a Ministry of Health paper, Australia on overcrowding in Accident & Emergency Departments August 2009).
Nice/ SIGN Guidelines
Close to home we have a number of Sign Guidelines and Nice Guidelines that argue for maximum waiting times for people with particular conditions. For example Sign Guideline 123 and Nice Guideline CG79 argue for quick referral and quick treatment for people with rheumatoid arthritis (between 2-4 weeks of referral).
Gaming and Reshuffling of Patients
One of the arguments levied against Waiting Time targets is that they do not make good use of resources, (there is gaming/reshuffling patients on lists) and performance against waiting targets is at the expense of other activities which are not subject to targets and which have a higher clinical priority. Propper, Sutton and Whitnell (2005) found that while long waiting times have been a key issue for the NHS for many years they found evidence (contrary to popular views of clinicians) that the clinical order of priority in which patients were treated from lists did not appear to have changed and the proportion of urgent cases did not fall. There was no evidence of a decrease in several measures of quality of care as a result of the policy introduced in England to target reductions in waiting times.
Quality of Life and Economic Considerations of Waiting Times
Waiting for healthcare entails some measure of pain and suffering and perhaps mental anguish and certainly some aspects of lost productivity at work and leisure. (The Consequences of Waiting, Fraser Institute, October 2013). It is entirely appropriate for clinicians to take a wait and see approach to certain medical conditions. Investigations may be deferred for appropriate reasons and immediate surgery may not always be the preferred option. Such delays are entirely justifiable based on medical indications. However, where treatment is required the severe impacts on life that can accompany waiting for medical treatment have been well researched in medical literature.
Sampalis (2001) found that longer waits for surgery were associated with significantly reduced physical function, vitality, social function and general health prior to surgery. Patients who waited longer were also less likely to return to work after surgery. Jonsdottir (1998) found that patients waiting for surgery had dual reductions in their physical and psychological functioning in addition to increased pain while also enduring emotional hardship.
Derrett (1999) examined the consequences of the quality of life for those waiting for hip and knee joint replacement. He found that patients waiting endured significant hardship. Nearly all of those waiting for joint replacements experienced pain but for half of them pain was so severe that it resulted in substantial or serious limitation of activities. Patients waiting for prostatectomy suffer from restricted drinking of fluids, struggle with long car drives, have difficulties getting to sleep and had a generally poorer physical function.
Ostendorf (2004) studied the consequences of waiting for total hip arthroplasty. Every month of waiting was associated with an avoidable loss in health related quality of life while waiting for treatment.
The impact of waiting on mental health is also an important issue. Freeman and colleagues (2009) looked at the mental health consequences of waiting for cataract surgery. They found that in spite of the temporary nature of the visual impairment prior to surgery those with very poor visual acuity were at a much higher risk of depression than those with better visual acuity. The conclusion is that shorter waiting times for cataract surgery may reduce or shorten the duration of depression.
From a wider economic point of view the medical and personal consequences of waiting for healthcare can have a significant economic impact. While economists and labour market experts have primarily studied the explicit costs of waiting for healthcare there have been some studies in the UK such as Cullis and Jones (1986) that considered the cost of private care to the individual when lengthy waits for treatment are the norm in the NHS. There have been several studies carried out on the estimated cost of waiting for a typical elective procedure - Propper (1990) Glouberman (1991) Esmail (2012) all provided calculations for the individual cost of waiting.
An interesting study in Canada for the Centre of Spatial Economics (2008) analysed the economic cost of wait times in excess of a maximum medically reasonable wait time for treatment. The focus was limited to four procedures (joints, cataracts, heart surgery and MRI scans). The final economic cost of waiting was a substantial 14.8bn (Canadian dollars at 2008 rates). The Canadian study estimates that 32% of joint patients, 7% of cataract patients and 95% of cardiac patients needed to discontinue regular activity. From a Social Care perspective 20% of joint patients, 5% of cataract patients and 25% of cardiac patients needed a caregiver.
Mental Health Standards
The dementia post-diagnostic (pds) HEAT target (now technically a LDP Standard) underpins what is primarily a non-clinical post-diagnostic service offer, recognising that while there a small number of clinical interventions (meds) which can slow progression of some forms of dementia only, people with the illness can nonetheless greatly benefit from skilled human interventions – and that such interventions at an early stage of the illness can help increase the efficiency of service response to dementia overall.
The justification and rationale for the pds service offer is that if people are diagnosed at an earlier stage and receive effective, person-centred and holistic post-diagnostic support on diagnosis (or shortly after), that support can enable the person with dementia to understand the progression of the illness better, make adjustments that can improve their quality of life as the illness progresses and plan earlier for future care options. The pds offer is for a minimum of a year, over which time the person with dementia (and their family) will work with a named Link Worker to build a care and support plan that will inform future care in all settings.
The post-diagnostic service model adopted in Scotland was developed by Alzheimer Scotland based on a pilot they undertook with the Dementia Services Development Centre with 3 areas in Scotland, providing real-life enhanced interventions. The pilot collected data on what was important to people with dementia and their families on diagnosis – so as well as understanding the illness, it was areas such as peer support and maintaining connected to friends, family and community (clubs, societies, church etc). So the evidence for the target is drawn from patient feedback rather than from any published clinical research.