Quality in healthcare has moved centre stage in the past few years. Quality healthcare isn’t just about treating diseases, it’s about treating people and indeed populations with or at risk of disease. Quality can be defined, it can be measured and it can be improved. The Institute of Medicine , in 2001 , proposed 6 specific aims for improvement. Healthcare should be: safe, effective, patient-centred, timely, efficient and equitable. To that we can now add a seventh, sustainable. In each of these dimensions we can develop metrics, quality indicators and quality standards to support improvements in direct patient care. These measures need to be based on evidence and comparison with what can be achieved in the best units. The measures can be displayed in clinical dashboards so that local renal unit teams can see immediately the effect of introducing Plan, Do, Study, Act (PDSA) cycles on the quality of care they are delivering. Quality indicators are published by the Renal Registry and these can now be incorporated into Trust’s quality accounts or form the basis of commissioning for quality and innovation the so called CQUIN scheme . Over the past 3 years, quality has become the organising principle of the National Health Service.
Quality can be defined in kidney disease right across the pathway: process measures for early detection of kidney disease in people with diabetes, blood pressure control, preparation for renal replacement therapy as evidenced by care planning, timely vascular access creation, pre-emptive transplantation, laparoscopic live donation, short cold ischaemic times for kidney transplantation, a host of biochemical measures for those on dialysis and preferred place of death for those who opt for conservative kidney care. Of course we don’t have all the answers and we don’t have the perfect indicators so we need to beware that we don’t make what is easy to measure important at the expense of what is truly important but perhaps difficult to measure . We need to increase our evidence base using clinical audit, quality improvement and a research to establish what are the best care bundles for certain populations at the different stages of chronic kidney disease or acute kidney injury.
Quality is not just about clinical outcomes but also includes the patient’s experience of treatment. In the recent mid-Staffordshire NHS Foundation Trust enquiry conducted by Robert Frances he commented “if there is one lesson to be learned it is that people must always come before numbers. It is the individual experiences that lie behind statistics and benchmarks that matter”. Treating people with dignity, how would we wish to be treated and how we would wish our families to be treated is part of providing high quality care for all.
The quality and productivity challenge is immense. The NHS is being asked to save between £20-26 billion across the service over 3 years. This will need innovation and transformational change . The characteristics of a sustainable system have been identified as: care closer to home, earlier interventions, fewer acute beds, more standardisation, empowered patients and reduced unit costs. To achieve these changes we need to think in terms of the whole system rather than within traditional organisational boundaries. We need to change the nature of leadership with its focus on targets to prioritise quality in all its dimensions .Looking out to see what we can copy or who we can collaborate with not up for answers from on high .We must encourage innovation and not hold back the leading edge; we must learn from failure and become less risk averse; but we must avoid change for the sake of change or “messing about masquerading as action”.
The members of the Renal Association and the British Renal Society are uniquely placed to lead this change. Clinicians need to work closely with managers and commissioners. Collaborative working across the virtual (or is that virtually insurmountable !!!) boundaries and barriers of the NHS will be needed. High quality care is delivered locally by individual clinicians who must be the advocates for their patients and the agents for change and quality improvement. Local teams must find local solutions, professional bodies must encourage comparative audit, sharing of best practice and help address the gradients of inequality. The Department of Health, the NHS Board , the Strategic Health Authorities and the providers of services - the PCTs, health boards and Trusts must play their part in system alignment making sure all parts of the system work together and pull in the same direction so we have winners – our public and patients; not so that we have institutional winners and institutional losers – a situation in which we would all lose.
Will it be possible to move to a virtuous circle where improving quality eliminates waste and improves efficiency? You may think that money is someone else’s business but addressing financial inefficiencies is a key personal, professional and moral responsibility because it allows us to free up resources that can then be used to treat more patients more effectively. I BELIEVE WE CAN DO IT.
Opening address to the RA BRS in Manchester, 17 May 2010
Tuesday, 18 May 2010
Q & A: Asylum seekers who need dialysis
Q: Dear Donal, I would be grateful for guidance on this issue. In recent years, and perhaps as a function of the proximity of Yarls Wood detention centre and Luton and Stansted airports, we are seeing increasing numbers of foreign asylum and residency seekers with established renal failure presenting for dialysis. The problem is however that these people are not entilted to full NHS services, rather what is described as 'emergency treatment' only. The PCTs wash their hands of them, the Home Office are painfully slow in processing their cases, and local Trusts unwilling to support regular dialysis. These poor people end up trailing around emergency rooms around the country, picking up ad hoc dialysis sessions on ITUs and differing renal units, until presumably they die.
We have one such woman who is on her 8th or 9th admission to a local ITU/renal unit, whose application for residency status has lasted about 18 months without any signs of progress, and to who I am not allowed to offer a regular slot. Indeed after I recently put her on our programme but she was removed last week (when her family refused to pay). I do feel strongly that we owe these people at least a basic humane level of care, if the Home Office are unable or unwilling to process their applications in a speedy fashion. This can’t be right. The ridiculous situation is that she has cost the NHS about £90K so far for less than a year - whereas to offer her regular HD would cost only circa £25K. This lady is likely to be discharged later this week and I therefore would value advice and help as soon as possible.
Thanks, Dr Paul Warwicker, Renal CD. Lister Renal Units
A: Dear Paul, foreign asylum and residency seekers with established renal failure , are exempt from charge for all hospital treatment, including dialysis, under the “NHS (Changes to Overseas Visitors) Regulations 1989”, as amended, if they have made an application for asylum, which has not yet been determined, including all appeals . This includes those applying for leave to remain under Article 3 of the European Convention of Human Rights on protection from serious harm grounds. They should receive the same level and quality of service and be subject to the same waiting lists and processes as anyone else, based on clinical need. Therefore, it is not correct to say that they are entitled to emergency treatment only.
Failed asylum seekers are not entitled to free hospital treatment, unless the service they receive is exempt (eg treatment provided inside an A&E) or, in most cases, for the continuation of a course of treatment begun whilst they were still awaiting the decision on their application. It is for a clinician to decide what constitutes a particular course of treatment such as maintenance dialysis
Those who are making other applications to remain as residents may not be exempt from charges until they have been accepted or until they have accumulated 12 months’ lawful residence whilst awaiting a decision.
However, Department of Health guidance is clear that anyone who a clinician considers to be in need of immediately necessary treatment must receive it regardless of charges, and it is usually inappropriate or impossible to request charges before treatment. Therefore, the payment is arranged after treatment, and if the person cannot pay then the debt is written off. Urgent treatment is that which, whilst not immediately necessary, cannot wait until the patient can reasonably be expected to return home. Clinicians may base their decision on whether treatment can wait on a range of factors. In many cases maintenance dialysis can be considered urgent. Trusts should take the opportunity ahead of treatment to secure deposits but if this is not possible, the treatment should go ahead. Trusts have a duty to recover charges, but can ultimately write them off if it is not reasonable to pursue them. Only when the clinician considers the need for treatment to be non-urgent should it be denied if the patient does not pay in advance.
Therefore, a clinician may well consider that the need for treatment (regular maintenance dialysis in this case) of a person, including a failed asylum seeker, who is not in a position to return home soon will be “urgent”, in that they cannot wait. As you point out this course of action may indeed be cost less than relying on repeated emergency treatments
I understand guidance on this may be redrafted and issued for consultation soon as part of a larger exercise on access to the NHS by foreign nationals. I attach a summary of the existing guidance as it relates to foreign nationals’ access to dialysis, which was circulated to all Specialised Renal Commissioners for information and to cascade to clinicians on 12 February 2010. I hope this is helpful, Donal.
We have one such woman who is on her 8th or 9th admission to a local ITU/renal unit, whose application for residency status has lasted about 18 months without any signs of progress, and to who I am not allowed to offer a regular slot. Indeed after I recently put her on our programme but she was removed last week (when her family refused to pay). I do feel strongly that we owe these people at least a basic humane level of care, if the Home Office are unable or unwilling to process their applications in a speedy fashion. This can’t be right. The ridiculous situation is that she has cost the NHS about £90K so far for less than a year - whereas to offer her regular HD would cost only circa £25K. This lady is likely to be discharged later this week and I therefore would value advice and help as soon as possible.
Thanks, Dr Paul Warwicker, Renal CD. Lister Renal Units
A: Dear Paul, foreign asylum and residency seekers with established renal failure , are exempt from charge for all hospital treatment, including dialysis, under the “NHS (Changes to Overseas Visitors) Regulations 1989”, as amended, if they have made an application for asylum, which has not yet been determined, including all appeals . This includes those applying for leave to remain under Article 3 of the European Convention of Human Rights on protection from serious harm grounds. They should receive the same level and quality of service and be subject to the same waiting lists and processes as anyone else, based on clinical need. Therefore, it is not correct to say that they are entitled to emergency treatment only.
Failed asylum seekers are not entitled to free hospital treatment, unless the service they receive is exempt (eg treatment provided inside an A&E) or, in most cases, for the continuation of a course of treatment begun whilst they were still awaiting the decision on their application. It is for a clinician to decide what constitutes a particular course of treatment such as maintenance dialysis
Those who are making other applications to remain as residents may not be exempt from charges until they have been accepted or until they have accumulated 12 months’ lawful residence whilst awaiting a decision.
However, Department of Health guidance is clear that anyone who a clinician considers to be in need of immediately necessary treatment must receive it regardless of charges, and it is usually inappropriate or impossible to request charges before treatment. Therefore, the payment is arranged after treatment, and if the person cannot pay then the debt is written off. Urgent treatment is that which, whilst not immediately necessary, cannot wait until the patient can reasonably be expected to return home. Clinicians may base their decision on whether treatment can wait on a range of factors. In many cases maintenance dialysis can be considered urgent. Trusts should take the opportunity ahead of treatment to secure deposits but if this is not possible, the treatment should go ahead. Trusts have a duty to recover charges, but can ultimately write them off if it is not reasonable to pursue them. Only when the clinician considers the need for treatment to be non-urgent should it be denied if the patient does not pay in advance.
Therefore, a clinician may well consider that the need for treatment (regular maintenance dialysis in this case) of a person, including a failed asylum seeker, who is not in a position to return home soon will be “urgent”, in that they cannot wait. As you point out this course of action may indeed be cost less than relying on repeated emergency treatments
I understand guidance on this may be redrafted and issued for consultation soon as part of a larger exercise on access to the NHS by foreign nationals. I attach a summary of the existing guidance as it relates to foreign nationals’ access to dialysis, which was circulated to all Specialised Renal Commissioners for information and to cascade to clinicians on 12 February 2010. I hope this is helpful, Donal.
Monday, 10 May 2010
What the future may hold for kidney care
“Prediction is very difficult, especially about the future” Niels Bohr.
We live in changing times and there is much talk of uncertainty. Globally healthcare demands are rising and in the UK the bank bail out has left our government with a large debt one consequence of which is reduced public service finance. The Kings Fund has predicted that the National Health Service will have to make 26 billion pounds efficiency savings between 2011 and 2014. How will that be achieved? What changes to the structure and financial systems of the NHS will we see? What will the new government’s priorities be? and how will they be achieved? What will the NHS look like and feel like in five years time?
One certainty is that the scale and pace of change is going to accelerate, but there are other certainties as well – the population will continue to age, the use of the internet in healthcare will grow, health literacy will improve and non communicable long term conditions in particular vascular disease will continue to be one of our greatest challenges. Kidney disease in all its various forms is not going away and the prize of better patient experience and outcomes laid out in the National Service Framework for Renal Services published just over five years ago not only remains relevant but also provides the goals and vision for that ambition.
Chronic Kidney Disease is now recognised as a public health problem, prevention, early detection and better primary care management of CKD is firmly on the agenda and over the last three years we have witnessed a shift in the understanding and confidence of non renal healthcare professionals in dealing with kidney problems. The job is not done – only half the expected number of people with CKD have been identified and blood pressure is not optimised in half of these, inappropriate referrals and avoidable “crash landings“ have declined but the variance we can now see between practices and across the country indicates that we can do better. Proteinuria was only introduced into the Quality and Outcomes Framework a year ago and we are yet to see its impact, it is still not recognised as the powerful cardiovascular risk factor that it is by many outside the kidney community.
With the growing experience and confidence of GPs practice nurses and pharmacists I expect more and more people with kidney disease will be told about their results, what they mean (and don’t mean) and what that person can do to reduce their future vascular and renal risks. The goal is for our public to understand kidney disease – estimated glomerular filtration rate and urinary albumin creatinine ratios in the same way they comprehend the link between cholesterol and heart disease, for people with CKD to be informed and activated to participate in their own care and remaining healthy strategies and for all those involved along the kidney pathways of care to support the individual to achieve the best outcome they can.
Preparation for timing and choice of renal replacement therapy modality or conservative kidney care remain essential for good outcomes in advanced chronic kidney disease. The key is shared decision making – where the multi-professional kidney care team provide detailed information about the options, their risks, benefits and uncertainties for that individual patient and the patient often with family and carers shares their values, beliefs and aspirations so that a truly informed choice can be made. This investment in time, building relationships with our patients provides high quality care and saves money. The shape of our End Stage Renal Failure services will change – in part that might be constrained by the current financial climate but I would prefer that to be shaped by our patients and believe we can provide a better service for more patients in three years than we do now.
Getting our metrics of success right is crucial. The UK public support transplantation, the transplant plan is on course, transplantation rather than dialysis then transplantation should be norm with live donor transplants. Live donors continue to rise year on year, in the centres that are ahead of game we see no sign of reaching a plateau – that’s good . There is an 18 week pathway but delays in transplant listing and surgery still exist – where those delays are avoidable the NHS could do better and unnecessary delays waste money. High quality care is actually cheaper than chaotic care.
In the coming year we will see a focus on Acute Kidney Injury and I hope see the foundations for improvement in services for people with rare kidney disease being laid. Acute Kidney Injury has been estimated to cost 5% of the whole expenditure of hospitals. AKI is common, harmful and treatable. Only 50% of people who die of AKI receive good or adequate care. In 20% AKI is predictable and avoidable. Improvements in the quality of kidney care will save money.
Rare kidney diseases often affect young people and frequently result in the early development of renal failure. Our understanding of some of these conditions is improving rapidly, novel treatments are in the pipe line. Research, expertise and a service responsive to the needs of these families in needed.
So the climate has changed, some of the rules are likely to be ripped up and rewritten but the destination remains the same and new opportunities will arise to improve the experience and outcome of kidney care.
“The best way to predict the future is to invent it “ Alan Kay.
We live in changing times and there is much talk of uncertainty. Globally healthcare demands are rising and in the UK the bank bail out has left our government with a large debt one consequence of which is reduced public service finance. The Kings Fund has predicted that the National Health Service will have to make 26 billion pounds efficiency savings between 2011 and 2014. How will that be achieved? What changes to the structure and financial systems of the NHS will we see? What will the new government’s priorities be? and how will they be achieved? What will the NHS look like and feel like in five years time?
One certainty is that the scale and pace of change is going to accelerate, but there are other certainties as well – the population will continue to age, the use of the internet in healthcare will grow, health literacy will improve and non communicable long term conditions in particular vascular disease will continue to be one of our greatest challenges. Kidney disease in all its various forms is not going away and the prize of better patient experience and outcomes laid out in the National Service Framework for Renal Services published just over five years ago not only remains relevant but also provides the goals and vision for that ambition.
Chronic Kidney Disease is now recognised as a public health problem, prevention, early detection and better primary care management of CKD is firmly on the agenda and over the last three years we have witnessed a shift in the understanding and confidence of non renal healthcare professionals in dealing with kidney problems. The job is not done – only half the expected number of people with CKD have been identified and blood pressure is not optimised in half of these, inappropriate referrals and avoidable “crash landings“ have declined but the variance we can now see between practices and across the country indicates that we can do better. Proteinuria was only introduced into the Quality and Outcomes Framework a year ago and we are yet to see its impact, it is still not recognised as the powerful cardiovascular risk factor that it is by many outside the kidney community.
With the growing experience and confidence of GPs practice nurses and pharmacists I expect more and more people with kidney disease will be told about their results, what they mean (and don’t mean) and what that person can do to reduce their future vascular and renal risks. The goal is for our public to understand kidney disease – estimated glomerular filtration rate and urinary albumin creatinine ratios in the same way they comprehend the link between cholesterol and heart disease, for people with CKD to be informed and activated to participate in their own care and remaining healthy strategies and for all those involved along the kidney pathways of care to support the individual to achieve the best outcome they can.
Preparation for timing and choice of renal replacement therapy modality or conservative kidney care remain essential for good outcomes in advanced chronic kidney disease. The key is shared decision making – where the multi-professional kidney care team provide detailed information about the options, their risks, benefits and uncertainties for that individual patient and the patient often with family and carers shares their values, beliefs and aspirations so that a truly informed choice can be made. This investment in time, building relationships with our patients provides high quality care and saves money. The shape of our End Stage Renal Failure services will change – in part that might be constrained by the current financial climate but I would prefer that to be shaped by our patients and believe we can provide a better service for more patients in three years than we do now.
Getting our metrics of success right is crucial. The UK public support transplantation, the transplant plan is on course, transplantation rather than dialysis then transplantation should be norm with live donor transplants. Live donors continue to rise year on year, in the centres that are ahead of game we see no sign of reaching a plateau – that’s good . There is an 18 week pathway but delays in transplant listing and surgery still exist – where those delays are avoidable the NHS could do better and unnecessary delays waste money. High quality care is actually cheaper than chaotic care.
In the coming year we will see a focus on Acute Kidney Injury and I hope see the foundations for improvement in services for people with rare kidney disease being laid. Acute Kidney Injury has been estimated to cost 5% of the whole expenditure of hospitals. AKI is common, harmful and treatable. Only 50% of people who die of AKI receive good or adequate care. In 20% AKI is predictable and avoidable. Improvements in the quality of kidney care will save money.
Rare kidney diseases often affect young people and frequently result in the early development of renal failure. Our understanding of some of these conditions is improving rapidly, novel treatments are in the pipe line. Research, expertise and a service responsive to the needs of these families in needed.
So the climate has changed, some of the rules are likely to be ripped up and rewritten but the destination remains the same and new opportunities will arise to improve the experience and outcome of kidney care.
“The best way to predict the future is to invent it “ Alan Kay.
Can there be too much patient empowerment?
Listening to patients and carers always brings new insights. Many patients on home dialysis are real experts and can troubleshoot many of the problems they encounter often having had years of experience. Some have built up a network of patient colleagues that they can bounce ideas off, that’s one thing we should certainly encourage.
However, a sense of isolation can also often be heard in the voices and experiences of home dialysis patients. The subtle or not so subtle change of marital partnership to carer and patient relationship needs to be both borne in mind and openly discussed.
Perhaps where empowerment stops and shifting responsibility starts is when home haemodialysis patients have to ring round their local satellite units themselves to find a space should technical or other problems arise precluding them having their dialysis, for instance, over the bank holiday weekend. Supporting expert patients and for those that have them their carers is a crucial aspect of dialysis at home and one we, since we are the system, need to improve if all those that could benefit from home dialysis are to realise the many benefits suitable patients can enjoy such as eating spinach, tomato and mushrooms.
However, a sense of isolation can also often be heard in the voices and experiences of home dialysis patients. The subtle or not so subtle change of marital partnership to carer and patient relationship needs to be both borne in mind and openly discussed.
Perhaps where empowerment stops and shifting responsibility starts is when home haemodialysis patients have to ring round their local satellite units themselves to find a space should technical or other problems arise precluding them having their dialysis, for instance, over the bank holiday weekend. Supporting expert patients and for those that have them their carers is a crucial aspect of dialysis at home and one we, since we are the system, need to improve if all those that could benefit from home dialysis are to realise the many benefits suitable patients can enjoy such as eating spinach, tomato and mushrooms.
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