I have previously recounted the analogy Guy Hill once used to compare the stress and strains of transport to and from dialysis, 6 journeys a week(!), with the anxiety many of us feel on the way to the airport for holiday when we are rushed or late! For hospital or satellite based haemodialysis patients the arrangements and quality of transport are part of the experience of care; in many instances transport has a high impact on quality of life, even clinical outcomes.
How is your unit doing? Have a look. Overall, there hasn’t been a massive change between 2008 and 2010 but there has been a lot more change between units than you would see, for instance, in the premier league. Have a look at what your unit is good at. Have a look at what you might improve. Perhaps there is a unit in your network that does better – find out why.
These unit level results are now a valuable resource for individual Trust Boards, kidney care teams, kidney patient associations, commissioners and networks to use to set goals for the coming year(s). There is some excellent practice across the country such as the Southend transport redesign project, featured on NHS Evidence and the integrated Northern Ireland approach reported at the recent British Renal Society/Renal Association joint conference.
Improving transport for haemodialysis can significantly improve the quality of life for people receiving hospital based haemodialysis, it can save millions of pounds for the NHS and could reduce the carbon footprint by up to 10 million miles per year.
Showing posts with label July 2011. Show all posts
Showing posts with label July 2011. Show all posts
Thursday, 28 July 2011
Tuesday, 26 July 2011
Co-ordination of care - does it work?
Increasing value for money in healthcare by improving quality, particularly the quality of patient outcomes, while reducing costs is a challenge facing health systems across the globe. The NHS has the “Nicholson challenge” said to be visible from space - to save £20 billion over the next 4 years at a time when demand on services continues to increase at around 7% per year. Shortly after the scale of the global financial crisis became apparent, John Ovretveit wrote an influential report “Does quality save money?”. John’s conclusion was that there is insufficient evidence to demonstrate a link between improving quality and saving money – the studies just have not been done. He did however highlight some areas where further work should urgently be undertaken and one of these was clinical coordination that could play a role in reducing waste, improving patient outcomes and delivering care at lower costs. Dr Ovretveit has now examined the evidence base for clinical coordination and how it can help in the decision making of clinicians and managers as new models of care and ways of organising services are developed.
The strength of the evidence is weak, as many of the changes tried to improve coordination have not been well evaluated. By its nature, coordination is dependent on the local context so opportunities and costs will vary in each healthcare system and in each different setting within particular systems. Attempts to replicate what’s happening in one clinic at the other end of the country or on the other side of the world are not always successful. Locally in Salford the development of a dialysis co-ordinator role led to removal of unnecessary blocks in offering patients the most appropriate dialysis location and timing for them. It took a lot of hassle away from the nurses and doctors and improved efficiency; a change for the better that ticked all the boxes and for which Vicky Jewell won the Salford Royal’s staff award for “administrative worker of the year” in 2008. It was written up as a poster for the BRS “you really can’t do without one of these – the role of the dialysis co-ordinator”.
More coordination and more care does not always result in better outcomes. Brendan Barrett and colleagues from Canada recently published the results of their randomised control trial of a nurse coordinated model of care versus usual care for patients with stage 3 / 4 chronic kidney disease in the community. It was a well conducted and reasonably large study. It confirmed that patients with stage 3 / 4 CKD identified through community laboratories largely had non progressive kidney disease but did have a high cardiovascular risk. Over the 2 year study period the nurse coordinated team did not affect the rate of GFR decline or provide better control of most risk factors compared to usual care. One conclusion might be that in people with a low rate of kidney disease progression and good management of traditional cardiovascular risk factors, the vascular event rate remains high and the nurse coordinated model of care has no additional beneficial effect over and above usual care provided by a family doctor. Perhaps what we need for this population is a better understanding of why the vascular risk in kidney disease is not as responsive to traditional interventions as other populations – we have a research need rather than a coordination and service delivery need . That’s also one of the messages from the recent SHARP study of cholesterol lowering agents in kidney disease – yes lowering cholesterol adds benefit but the risk reduction in people with kidney disease is only half of what we might expect from the studies in people without kidney disease .
John Ovretveit’s work however did identify many good ideas for better clinical coordination which are likely to be effective, especially if used in conjunction with other approaches to improving care such as disease management and self care programmes. These ideas are as likely to be beneficial in kidney care as in other long term conditions.
Perhaps the most important message is the importance of identifying which patients are most affected by poor coordination and the factors which are most influential in determining the effectiveness of interventions. In Kidney care that’s likely to be patients during the period of time before the need for renal replacement therapy when care planning , preparation and choice can have dramatic effect on experience of care and clinical outcomes; and in those who have elected for conservative kidney care, the non dialysis option. John concludes that in future, healthcare needs to operate as a value improvement system which makes the whole healthcare outcome for the patient greater than the sum of the help that each carer provides, and supports a patient to be independently healthy and more active in their care. That’s something for healthcare professionals to think about at every clinical encounter , needs to be borne in mind by health care managers when services are being designed and commissioned and should be a question patients , carers and families are invited to answer .
The strength of the evidence is weak, as many of the changes tried to improve coordination have not been well evaluated. By its nature, coordination is dependent on the local context so opportunities and costs will vary in each healthcare system and in each different setting within particular systems. Attempts to replicate what’s happening in one clinic at the other end of the country or on the other side of the world are not always successful. Locally in Salford the development of a dialysis co-ordinator role led to removal of unnecessary blocks in offering patients the most appropriate dialysis location and timing for them. It took a lot of hassle away from the nurses and doctors and improved efficiency; a change for the better that ticked all the boxes and for which Vicky Jewell won the Salford Royal’s staff award for “administrative worker of the year” in 2008. It was written up as a poster for the BRS “you really can’t do without one of these – the role of the dialysis co-ordinator”.
More coordination and more care does not always result in better outcomes. Brendan Barrett and colleagues from Canada recently published the results of their randomised control trial of a nurse coordinated model of care versus usual care for patients with stage 3 / 4 chronic kidney disease in the community. It was a well conducted and reasonably large study. It confirmed that patients with stage 3 / 4 CKD identified through community laboratories largely had non progressive kidney disease but did have a high cardiovascular risk. Over the 2 year study period the nurse coordinated team did not affect the rate of GFR decline or provide better control of most risk factors compared to usual care. One conclusion might be that in people with a low rate of kidney disease progression and good management of traditional cardiovascular risk factors, the vascular event rate remains high and the nurse coordinated model of care has no additional beneficial effect over and above usual care provided by a family doctor. Perhaps what we need for this population is a better understanding of why the vascular risk in kidney disease is not as responsive to traditional interventions as other populations – we have a research need rather than a coordination and service delivery need . That’s also one of the messages from the recent SHARP study of cholesterol lowering agents in kidney disease – yes lowering cholesterol adds benefit but the risk reduction in people with kidney disease is only half of what we might expect from the studies in people without kidney disease .
John Ovretveit’s work however did identify many good ideas for better clinical coordination which are likely to be effective, especially if used in conjunction with other approaches to improving care such as disease management and self care programmes. These ideas are as likely to be beneficial in kidney care as in other long term conditions.
Perhaps the most important message is the importance of identifying which patients are most affected by poor coordination and the factors which are most influential in determining the effectiveness of interventions. In Kidney care that’s likely to be patients during the period of time before the need for renal replacement therapy when care planning , preparation and choice can have dramatic effect on experience of care and clinical outcomes; and in those who have elected for conservative kidney care, the non dialysis option. John concludes that in future, healthcare needs to operate as a value improvement system which makes the whole healthcare outcome for the patient greater than the sum of the help that each carer provides, and supports a patient to be independently healthy and more active in their care. That’s something for healthcare professionals to think about at every clinical encounter , needs to be borne in mind by health care managers when services are being designed and commissioned and should be a question patients , carers and families are invited to answer .
Thursday, 7 July 2011
Patient decision aids – positive response but some barriers to overcome
The interim report on the evaluation of the web and telephone delivered patient decision support interventions introduced over the last year makes some interesting reading. Glynn Elwyn, a leading expert on shared decision making and colleagues from Cardiff looked at the uptake and initial responses to patient decision aids in 3 areas: osteoarthritis of the knee, localised prostate cancer and benign prostatic hyperplasia.
They found that it was relatively easy to recruit patients to use the web-based decision support tools and there was a very high willingness to access these kind of resources but once patients had logged into the systems there was significant attrition. As with other websites most of the drop-out seemed to be due to technical problems, difficulties with the log in system and initially with a high data collection burden before patients had been given chance to access the information that they were logging in to see. These technical barriers are perhaps to be expected . Everyone reading this blog will be aware of the frustrations of trying to navigate over-complicated websites. Simplicity is they key. The selected group that were able to navigate the system made very positive comments about the approach and there was a high degree of satisfaction People were particularly enthusiastic about the content and layout, maybe that is a reflection of the poor quality of a lot of patient information leaflets and educational material ? They were delighted to know that the information had been validated by experts and that it was accessible in clear language. The ability to produce a summary page was also valued and many patients were looking forward to using these summaries with their clinicians. But read on …. that wasn’t what the clinicians were looking forward to!
"The specialist leads the assessment process. The referral letters and X-rays are assessed at least weekly, marked up and given to the referral clerk on the unit to send an appointment letter and, if the specialists deems it appropriate, this is accompanied by the standard NHS Direct letter inviting the patient to visit the website and telephone help line. A record of those invited to visit the websites is kept by the lead nurse. No process has been set up to follow-up or encourage the use of the decision support website. The lead nurse plans to check to see what summaries are available from patients referred to the website.
The nurses and unit manager seemed very committed to the idea of involving patients in decision making. However, the specialist was less supportive of the idea that patients could become involved in decision making, despite his role on the national steering group for the development of the decision support website. However, he recognised that there is a problem around the choice of knee replacement and cites evidence that over 20% of patients are dissatisfied with surgical outcomes, mainly because they have inappropriate expectations of significant improvement in function rather than pain relief. The nurses at this site were however clearer that the website would help because it gives patients access to impartial, balanced information. The nurses and unit manager are committed to shared decision making but the specialist is less committed when asked directly. Nevertheless, the specialist does approve of better informed patients as he believes that greater degrees of informed choice will improve satisfaction rates but that even so, this would make little difference in operation uptake rates.
There was some confusion about how summary pages would be used. The specialist was anxious to establish that he would not want to have to use them in his clinic. He did not want to make use of the patient‟s knowledge, their knee 22 score, the degree to which they were ready to make a decision and their personal preferences as documented in such a summary. The nurses seemed bemused by this as they thought this was a central objective of the project. The nurses suggested that they would ensure that the summary pages would be put in the notes and, if possible, attention drawn to them as the specialist and the patient interact. This reaction raises an important point about expectations. If the patient has completed the work involved in producing a summary page and an Oxford Knee Score they will likely become better informed and probably more confident about asking questions. In addition, they will likely expect that the specialist will know and acknowledge that they have accessed the site and that he or she would be interested in their view, in their choices and in their rationale for that choice. If the specialist does not acknowledge this process they will miss an opportunity to engage the patient and also risk alienating them. We know from a patient interview from this hospital that the patient expects to discuss the results of her use of the website and for this to be central to the consultation. This potential mismatch of expectations points to the difficulty of engaging clinical staff in the concept of shared decision making, supported by the use of tools such as patient directed websites."
The report identified a large divergence of expectations between the patients and clinicians. The doctors and nurses were in the main enthusiastic about the concept of referring patients to decision support websites but there was much less understanding of shared decision making. The idea that patients wish to become well informed in order to participate in decisions is surprisingly not widely understood or accepted. Despite the patients’ enthusiasm, many of the specialists stated they would not be interested in the individualised summary pages produced by the websites for the patients if they were presented back to them in clinic. This seemed to be more than just a matter of time. Its an early finding and clinician buy-in might change as health care professionals get more used to patient participation.
In summary, the patients are enthusiastic about the approach, some technical issues need to be addressed to achieve high uptake but the biggest barrier would appear to be cultural rather than technical. It therefore seems essential to offer and provide training and support to clinical teams as part of making real care planning and shared decision making a reality.
"NHS Direct as a platform for decision support for patients: evaluation of Phase1"
Department of Primary Care and Public Health
School of Medicine
Cardiff University
Neuadd Meirionnydd
Heath Park
Cardiff
CF14 4YS
Professor Glyn Elwyn, Research Professor
Ms Kalbir Kaur-Mann, Research Assistant
Mr Andrew Rix, Independent Research and Evaluation Consultant
Mr Tom Holt, Statistician
Ms Deborah Jones, Independent Researcher
They found that it was relatively easy to recruit patients to use the web-based decision support tools and there was a very high willingness to access these kind of resources but once patients had logged into the systems there was significant attrition. As with other websites most of the drop-out seemed to be due to technical problems, difficulties with the log in system and initially with a high data collection burden before patients had been given chance to access the information that they were logging in to see. These technical barriers are perhaps to be expected . Everyone reading this blog will be aware of the frustrations of trying to navigate over-complicated websites. Simplicity is they key. The selected group that were able to navigate the system made very positive comments about the approach and there was a high degree of satisfaction People were particularly enthusiastic about the content and layout, maybe that is a reflection of the poor quality of a lot of patient information leaflets and educational material ? They were delighted to know that the information had been validated by experts and that it was accessible in clear language. The ability to produce a summary page was also valued and many patients were looking forward to using these summaries with their clinicians. But read on …. that wasn’t what the clinicians were looking forward to!
"The specialist leads the assessment process. The referral letters and X-rays are assessed at least weekly, marked up and given to the referral clerk on the unit to send an appointment letter and, if the specialists deems it appropriate, this is accompanied by the standard NHS Direct letter inviting the patient to visit the website and telephone help line. A record of those invited to visit the websites is kept by the lead nurse. No process has been set up to follow-up or encourage the use of the decision support website. The lead nurse plans to check to see what summaries are available from patients referred to the website.
The nurses and unit manager seemed very committed to the idea of involving patients in decision making. However, the specialist was less supportive of the idea that patients could become involved in decision making, despite his role on the national steering group for the development of the decision support website. However, he recognised that there is a problem around the choice of knee replacement and cites evidence that over 20% of patients are dissatisfied with surgical outcomes, mainly because they have inappropriate expectations of significant improvement in function rather than pain relief. The nurses at this site were however clearer that the website would help because it gives patients access to impartial, balanced information. The nurses and unit manager are committed to shared decision making but the specialist is less committed when asked directly. Nevertheless, the specialist does approve of better informed patients as he believes that greater degrees of informed choice will improve satisfaction rates but that even so, this would make little difference in operation uptake rates.
There was some confusion about how summary pages would be used. The specialist was anxious to establish that he would not want to have to use them in his clinic. He did not want to make use of the patient‟s knowledge, their knee 22 score, the degree to which they were ready to make a decision and their personal preferences as documented in such a summary. The nurses seemed bemused by this as they thought this was a central objective of the project. The nurses suggested that they would ensure that the summary pages would be put in the notes and, if possible, attention drawn to them as the specialist and the patient interact. This reaction raises an important point about expectations. If the patient has completed the work involved in producing a summary page and an Oxford Knee Score they will likely become better informed and probably more confident about asking questions. In addition, they will likely expect that the specialist will know and acknowledge that they have accessed the site and that he or she would be interested in their view, in their choices and in their rationale for that choice. If the specialist does not acknowledge this process they will miss an opportunity to engage the patient and also risk alienating them. We know from a patient interview from this hospital that the patient expects to discuss the results of her use of the website and for this to be central to the consultation. This potential mismatch of expectations points to the difficulty of engaging clinical staff in the concept of shared decision making, supported by the use of tools such as patient directed websites."
The report identified a large divergence of expectations between the patients and clinicians. The doctors and nurses were in the main enthusiastic about the concept of referring patients to decision support websites but there was much less understanding of shared decision making. The idea that patients wish to become well informed in order to participate in decisions is surprisingly not widely understood or accepted. Despite the patients’ enthusiasm, many of the specialists stated they would not be interested in the individualised summary pages produced by the websites for the patients if they were presented back to them in clinic. This seemed to be more than just a matter of time. Its an early finding and clinician buy-in might change as health care professionals get more used to patient participation.
In summary, the patients are enthusiastic about the approach, some technical issues need to be addressed to achieve high uptake but the biggest barrier would appear to be cultural rather than technical. It therefore seems essential to offer and provide training and support to clinical teams as part of making real care planning and shared decision making a reality.
"NHS Direct as a platform for decision support for patients: evaluation of Phase1"
Department of Primary Care and Public Health
School of Medicine
Cardiff University
Neuadd Meirionnydd
Heath Park
Cardiff
CF14 4YS
Professor Glyn Elwyn, Research Professor
Ms Kalbir Kaur-Mann, Research Assistant
Mr Andrew Rix, Independent Research and Evaluation Consultant
Mr Tom Holt, Statistician
Ms Deborah Jones, Independent Researcher
Get activated – it makes you feel better and improves your chances
There is a growing consensus based on a substantial evidence base that the more involved people are in their own health and own care can profoundly affect how people view themselves and their outcomes. Patients need more than just information, they also need support to become more informed decision makers and managers of their own health.
Activation refers to peoples’ ability and willingness to take on the role of managing their health and healthcare. Research on patient activation suggests that individuals go through phases or levels on their way to becoming effective self managers. At the first or lowest level people tend to be passive and may not feel confident enough to play an active role in their own care. The first step is believing an active role is important; at the second level people start acquiring the basic knowledge and understanding of themselves and their condition and begin developing confidence in their own abilities. This might include being brave enough to discuss your concerns with doctors and nurses even when they don’t ask about them – questions such as “what does this medicine do?” are easy, questions relating to impact of treatments on body image or sex far more difficult. The third level is reached when patients are taking action such as maintaining the lifestyle changes for health that have been made. Staying the course is the fourth stage; at this level people have adopted many of the behaviours to support their health and may even be able to maintain them in the face of live stressers. They can figure out solutions when new situations or problems arise with their health condition.
Activation can be reliably measured and more importantly is changeable over time. People who get support for being proactive about their health and care from their general practice or kidney care teams, from colleagues and managers at work and from friends and family tend to be more activated and to engage in healthier behaviours and choices. Gains in activation are followed by improvements in experience and outcomes and as a consequence the amount of healthcare and costs fall, even though people with chronic conditions who are highly activated are much less likely to report unmet health needs compared to those with lower levels of activation. People who are less activated are less likely to get around the barriers to good care and have less success in navigating the highly complex and often confusing healthcare system. Activated patients have better blood pressure control, less depression and live longer.
So, GET ACTIVATED, take the first step, find out what your medicines do, find out what your options are, get your questions answered in your consultation, take charge of your own health and care.
Individual patients may well not be able to do this alone. Doctors nurses, dietitians, pharmacists, indeed the whole care team have a role in promoting and supporting patient activation and care planning. The healthcare professionals should check with patients after each encounter that the patient understands what has been discussed – we are often on different pages! More activated patients have more positive and supportive healthcare experiences. Kidney patient associations should all take a role in helping care teams become more supportive in helping individuals take control.
Published in the Royal Free Hospital KPA newsletter July 2011
Activation refers to peoples’ ability and willingness to take on the role of managing their health and healthcare. Research on patient activation suggests that individuals go through phases or levels on their way to becoming effective self managers. At the first or lowest level people tend to be passive and may not feel confident enough to play an active role in their own care. The first step is believing an active role is important; at the second level people start acquiring the basic knowledge and understanding of themselves and their condition and begin developing confidence in their own abilities. This might include being brave enough to discuss your concerns with doctors and nurses even when they don’t ask about them – questions such as “what does this medicine do?” are easy, questions relating to impact of treatments on body image or sex far more difficult. The third level is reached when patients are taking action such as maintaining the lifestyle changes for health that have been made. Staying the course is the fourth stage; at this level people have adopted many of the behaviours to support their health and may even be able to maintain them in the face of live stressers. They can figure out solutions when new situations or problems arise with their health condition.
Activation can be reliably measured and more importantly is changeable over time. People who get support for being proactive about their health and care from their general practice or kidney care teams, from colleagues and managers at work and from friends and family tend to be more activated and to engage in healthier behaviours and choices. Gains in activation are followed by improvements in experience and outcomes and as a consequence the amount of healthcare and costs fall, even though people with chronic conditions who are highly activated are much less likely to report unmet health needs compared to those with lower levels of activation. People who are less activated are less likely to get around the barriers to good care and have less success in navigating the highly complex and often confusing healthcare system. Activated patients have better blood pressure control, less depression and live longer.
So, GET ACTIVATED, take the first step, find out what your medicines do, find out what your options are, get your questions answered in your consultation, take charge of your own health and care.
Individual patients may well not be able to do this alone. Doctors nurses, dietitians, pharmacists, indeed the whole care team have a role in promoting and supporting patient activation and care planning. The healthcare professionals should check with patients after each encounter that the patient understands what has been discussed – we are often on different pages! More activated patients have more positive and supportive healthcare experiences. Kidney patient associations should all take a role in helping care teams become more supportive in helping individuals take control.
Published in the Royal Free Hospital KPA newsletter July 2011
Tuesday, 5 July 2011
Heath & social care - time for a change
“We should be celebrating the fact that we are living longer and that young people with disabilities are leading more independent lives than ever before” said Andrew Dilnot launching the report Fairer Care Funding yesterday. On the eve of the 63rd anniversary of the creation of the NHS, Dilnot went on to point out that the issue of funding for adult social care had been ignored for too long by all parties.
The key recommendations are that:
- Individuals’ lifetime contributions towards their social care costs – which are currently unlimited – should be capped. The Commission considers a gap of £35K to be appropriate and fair.
- The means-tested threshold, above which people are liable to their full care costs should be increased from £23,250 to £100K.
- All those who enter adulthood with care and support needs should be eligible for free State support immediately.
- Eligibility criteria should be simplified, national and portable.
- Carers should be supported and also are entitled to transparent assessment aimed to ensure that the impact on the carer is manageable and sustainable.
The Commission calls for a significant improvement in the provision of information and advice, and more joined up working across the whole care and support system – health, housing, benefits and adult social care.
There are stories to illustrate the challenges people face – losing homes or small inheritances, being unable to move to be close to relatives and using all their pension income and disability benefits to pay for care with no room for an occasional treat or fun. None of these specifically mention people on dialysis or those with advanced kidney care needs. They don’t need to, the stories are compelling and universal. The current system is confusing, unfair and unsustainable. People are unable to plan ahead and unable to protect themselves against very high care costs. This affects people with kidney disease the same as it affects the people whose stories appear in the report, with arthritis or stroke or severe chest disease, and it also affects their families and carers.
People are living longer, hence the increasing numbers with advanced kidney disease. In 1901, there were just over 60,000 people aged 85 and over in the UK. Today there are 1.5 million – a five-fold increase. Their and our expectations are rising and different from their grandparents’ view of care which they held when the Welfare State was founded. These demographic changes aren’t going away and the Commission urge action to be taken now. The report’s recommendations link with the Law Commission’s proposals that a new social care statute should place duties on local authorities to provide information, advice and assistance services in their areas; and to stimulate and shape the market for services.
Overall, the State spends around £140 billion on older people in England. Of this, social care represents about 6%; the NHS 35%; and Social Security benefits, 59% (including pensions and disability benefits). The spending requirement of £1.7 billion to implement Fairer Care Funding needs to be seen in this context. The Law Commission recently recommended that NHS continuing healthcare be put on a firmer statutory footing. The Commission on the funding of care and support go further and call for a fundamental rethink to align social care and NHS treatment where currently different funding streams can sometimes be a barrier to high quality care because of, not only in spite of the overlap between health and social care provision.
The Commission supports the integration of social care and the NHS and is also broadly supportive of the direction of travel signalled by the palliative care funding review. Reform of the social care funding system is long overdue. Taken together, the Law Commission’s report on social care, the Fairer Care Funding report by Dilnot and the Palliative Care Funding Review released 1 July provide clear advice consistent with the messages provided during the listing exercise on the Health and Social Care Bill. There is much chatter about long grass, but the issue of integration needs to be grasped sooner rather than later.
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