Patient care advisers: helping cardiac surgery patients to exercise choice
David Barrett, BA (Hons), RN, PGDip.
Lecturer in Nursing, University of Hull
The authors would like to acknowledge the help of the West Midlands regional Choice steering group, and the clinicians and managers who have helped make the Choice initiative such a success, particularly Corrine Ralph and Karen Helliwell. Tom Quinn is a member of the Coronary Heart Disease Task Force. At the time of writing he was the Heart Disease Programme Lead for West Midlands South Strategic Health Authority and in the latter capacity chairs the West Midlands regional Choice Steering Group. The views expressed in this article are personal. Care for patients awaiting cardiac surgery in England is undergoing significant change. Extending Choice for Patients (DoH, 2001) set in motion a series of developments to allow patients greater freedom to choose where they receive their treatment, while helping to reduce waiting lists for cardiac surgery throughout England.
|The authors would like to acknowledge the help of the West Midlands regional Choice steering group, and the clinicians and managers who have helped make the Choice initiative such a success, particularly Corrine Ralph and Karen Helliwell. Tom Quinn is a member of the Coronary Heart Disease Task Force. At the time of writing he was the Heart Disease Programme Lead for West Midlands South Strategic Health Authority and in the latter capacity chairs the West Midlands regional Choice Steering Group. The views expressed in this article are personal.|
Care for patients awaiting cardiac surgery in England is undergoing significant change. Extending Choice for Patients (DoH, 2001) set in motion a series of developments to allow patients greater freedom to choose where they receive their treatment, while helping to reduce waiting lists for cardiac surgery throughout England.
Crucial to the development of the Patient Choice Initiative has been the appointment of patient care advisers by cardiac surgical centres to act as the patient’s advocate throughout the process.
The coronary heart disease Choice pilot started in July 2002, offering patients who have waited more than six months for heart surgery the choice of moving to an alternative hospital for faster treatment. By May 2003, 2529 patients in the pilot, which covers all cardiac surgical centres in England, had taken up this offer (DoH, 2003a).
This paper describes the roles of two patient care advisers practising in different settings, but with the same overall goal: to provide the best service for their patients.
In December 2001, the Government outlined its strategy to increase choice for patients awaiting treatment, to improve patients’ experience of the service, and to reduce waiting times (DoH, 2001). This was underpinned by commitments in The NHS Plan (DoH, 2000a) to increase the number of heart operations carried out nationally. The initial focus of the scheme was for patients awaiting heart surgery, although expansion to benefit other patient groups is now under way, with pilots in various parts of the UK covering other specialties (DoH, 2003b, 2003a).
National standards for improved prevention, diagnosis and treatment of coronary heart disease were published for the first time in the National Service Framework for Coronary Heart Disease in 2000 (DoH, 2000b). The rationale behind the NSF is clear: CHD remains the commonest cause of death (British Heart Foundation, 2002) and, while there is a large evidence base of effective measures to reduce mortality and morbidity from the condition, significant variations in access, quality and waiting times have previously been reported.
The NSF set targets of increasing the number of heart operations each year across England, to 6000 extra procedures - percutaneous coronary intervention and coronary artery bypass grafting - by April 2003. This target was achieved one year early (DoH, 2003c), and the maximum waiting time for cardiac surgery was reduced from 18 to 12 months by April 2002, with a maximum nine-month wait expected by April 2003, reducing to three months by March 2005.
The need to reduce waiting time
- While waiting, they suffer from a reduced quality of life due to symptoms such as chest pain (Bengston et al, 1996)
- They are at an increased risk of dying (Bridgewater, 1999).
Bridgewater (1999) estimated that as many as 500 patients die each year while waiting for cardiac surgery. Hemingway et al (2001) have demonstrated that patients in whom a revascularisation procedure is judged appropriate by an expert panel have significantly worse outcomes over a median 30-month follow-up where the recommended procedure is not undertaken.
The Patient Choice Initiative aims to reduce waiting times for patients by allowing hospitals where waiting times are short and spare capacity is available to support those centres experiencing capacity constraints and prolonged waiting times. In practice, all patients waiting for percutaneous coronary intervention and coronary artery bypass grafting for more than six months are considered for the scheme (Box 1).
If there are no clinical reasons (such as significant co-morbidity or particularly complex requirements, based on predetermined criteria drawn up and agreed by the professions) why the patients are unable to have surgery elsewhere, their own trust contacts them and offers a choice of other providers who could do an operation more quickly.
These ‘provider’ centres are principally other NHS trusts or independent sector hospitals within the UK, although the DoH has also been assessing the suitability of a number of mainland European centres to provide further capacity if needed.
Patients eligible for the Choice initiative can elect to remain on the waiting list for surgery at their local centre, with the guarantee that their total wait will be no longer than nine months. Or they can choose to be treated at another hospital, possibly within a few weeks.
Patient care advisers
There is no single model for how advisers operate in day-to-day practice. Local circumstances, such as the size and length of waiting lists and whether the trust will be sending patients to other centres as part of the Choice initiative, impact on their role. Two of this paper’s authors are patient care advisers in the Midlands and have vastly different roles, but work together to ensure a seamless path through the Choice system for their patients.
PCA role in a hospital ‘exporting’ patients
Much publicity surrounded Choice at the beginning of July 2002, and the patient care adviser felt the need to contact patients before the launch date to offer information about the role and how the scheme would work.
She wrote to all 170 patients to explain the process. She then selected the first cohort of 40 suitable patients and offered them the choice of alternative centres for their treatment.
The practice of offering alternative centres was not new to UHCW. To meet the 12-month waiting time target, patients had been sent for surgery to private hospitals in Leicester and Nottingham in the past. Two centres were to be used as alternative providers - the Park Hospital in Nottingham and North Staffordshire Hospitals NHS Trust (NSH) in Stoke.
The Choice scheme’s selection process involves the patient care adviser reviewing the notes of those waiting for over six months. In consultation with the patient’s cardiologist and existing cardiac surgeon, a decision is then made as to whether surgery elsewhere is appropriate. Some patients are unsuitable. For example they may need a complex valve operation requiring the expertise of a particular surgeon. The adviser contacts these patients and provides appropriate explanation, information and support.
The next step is to offer eligible patients the chance to decide where to be treated. For some patients, the choice is simple. Others need more time for the patient care adviser to explain the alternatives available, talking about the other centres and the surgeons, and reassuring them that the choice is their own.
Most patients have accepted the offer of going to a different hospital. Those who decide to stay at UHCW do so usually because they prefer to be treated by a surgeon they know well, or are uneasy about travelling far from home and family.
Once a patient has taken up the choice of an alternative provider, their casenotes are sent to surgeons at either Nottingham or Stoke to be reviewed. If they are accepted, a date is allocated for surgery, and the patient contacted by the accepting centre, or the patient care adviser, who then works with the accepting centre to arrange transport to and from the hospital for pre-admission clinics, the surgery itself, and subsequent outpatient appointments.
The Patient Choice Initiative allows for one relative to stay near the patient, free of charge, during their time in hospital. At the Park hospital in Nottingham, accommodation is at a local bed and breakfast. At Stoke, relatives stay in the nurses’ home.
Following discharge, the patient care adviser telephones patients to ensure that they are progressing well, and that their local cardiac rehabilitation team has contacted them. Strong links between the patient’s home hospital, and alternative providers are key to the success of the scheme. In the case of UHCW, the adviser has forged a strong link with NSH by working with its own patient care adviser.
The PCA in an ‘alternative provider’ hospital
For patient care advisers working in alternative provider hospitals, the role differs substantially from that of the adviser at the exporting hospital - the focus, however, remains on ensuring a smooth pathway of care for patients. Here the adviser co-ordinates the cares of patients once they have accepted Choice and casenotes have been forwarded.
Once the notes are received, the patient care adviser liaises with the surgeons to make sure they are happy to accept the patient for surgery. If a patient is not suitable, the adviser ensures the reasons are communicated clearly to the patient.
When a patient is accepted, the adviser at the alternative provider hospital contacts them directly with a date for a preadmission clinic and their surgery. At the time of admission, the adviser meets the patient and relative and helps orientate them to their new surroundings. From that point onwards, the PCA keeps a close eye on the patient’s progress, paying regular visits in the critical care unit and in the ward as they recover from surgery.
As the date of discharge approaches, both patient care advisers liaise with each other to arrange transport home, and confirm the patient has been referred to their local cardiac rehabilitation programme. On discharge, information about the patient’s operation and subsequent clinical course is sent to the patient’s cardiologist, their GP, and to the adviser at the exporting hospital.
Cardiac surgery is not without risk, and inevitably there will be times where things do not go according to plan. Mortality rates following isolated coronary artery bypass grafting are in the region of 2%, and while most patients spend up to 10 days in hospital postoperatively, there is a trend towards longer stays, which probably reflects increasing complexity and case mix (Society of Cardiothoracic Surgeons of Great Britain and Ireland, 2002).
If a patient dies following surgery, or requires a longer than expected hospital stay, the patient care adviser provides vital support for the family.
Supporting the PCAs
- Prevent them becoming professionally isolated
- Ensure clinical supervision
- Ensure professional development
- Achieve required governance arrangements.
Advisers maintain close links with clinical and managerial staff within their cardiac centre. Crucially, they also link in closely with the Patient Advice and Liaison Service (PALS), giving them a degree of independence from the operational management structure.
At a national level, patient care advisers are also accountable to Patient Choice trustees, including representatives from the British Heart Foundation and the British Cardiac Patients Association.
Developing networks of advisers is important for ensuring the smooth operation of the Patient Choice Initiative. Within the former West Midlands region, a Patient Choice steering group has allowed patient care advisers from the main tertiary centres to help develop operational policies and quality assurance exercises.
Nationally, the DoH has arranged workshops and learning days for all advisers. This allows sharing of best practice, networking among those who may not work together on a regular basis, and discussion over the future direction of the role.
Arrangements are being made for a small number of European centres to act as alternative providers of cardiac surgery, providing new challenges. While central support for the logistics of transport and repatriation is likely to be available, the degree of responsibility falling on patient care advisers for organising travel for patients and relatives to European centres has yet to be confirmed.
The biggest change in the role is likely to come when the NHS meets its longer-term target of having no patients waiting for more than six months for cardiac surgery, and as more progress is made towards achieving the maximum three-month wait target scheduled for March 2005.
It is possible that by this time few, if any, patients will require surgery at alternative providers.
What then for the patient care adviser? The most likely way forward is for advisers to improve the experience of local patients awaiting revascularisation, possible along the lines described by McHugh et al (2001), who evaluated the effectiveness of a nurse-led shared-care programme.
By developing treatment plans, and giving patients a point of contact where they can come with concerns or questions, this element of the role is arguably moving towards the ‘case management’ of patients on cardiac surgical waiting lists.
As advisers have fewer patients waiting longer than six months, so they will be able to contact patients earlier. This should mean, over time, that they see patients in cardiology clinics when the surgery is first recommended. From this stage on they can offer clinical support, along with ensuring that treatment will be completed within the more challenging waiting-time targets.
Nurse-led shared care of patients awaiting cardiac surgery is not new. McHugh et al (2001) demonstrated that a programme of shared care can improve the general health status of patients awaiting cardiac surgery, and lead to a reduction in anxiety and depression. Patient care advisers provide the perfect opportunity for the NHS to introduce co-ordinated programmes of monitoring and multidisciplinary care for patients awaiting cardiac surgery.
The Choice initiative will not end with cardiac surgery. The lessons learnt will benefit patients awaiting a host of medical and surgical interventions. It has already led to the expansion of the initiative into other specialties, with the Government setting targets for coverage by 2004 (Box 2).
Department of Health.(2003) Heart Choice Initiative: Trustees report, July 2002/July 2003. Available at: www.doh.gov.uk/heart/choice/trusteesreport.pdf.