We have been working with the NHS Information Centre and the Renal Registry to get the National Renal Dataset approved as a standard for use across England. The application was approved by the Information Standards Board for Health and Social Care at their meeting on 5 November. Particular thanks must go to Alison Roe (Project Manager for Standards and Classifications at the Information Centre) for steering this and taking it forward.
The Information Standards Board will now issue a Dataset Change Notice (DSCN). This is the formal mechanism that notifies NHS Trusts and their system suppliers of mandatory collections. It will give six months advance notice before collection of the data is required to start from May 2009. I have written to the clinical directors to bring this to the attention of your trust IT department now as there will no doubt be preparatory work for this which needs to start as soon as possible.
The majority of data items being mandated from May 2009 are contained within the current UK Renal Registry and UK Transplant data collections; however there are new items to be gathered which will need systems development.
Details of both the new and existing data items are provided in the dataset specification and guidance documents produced by the NHS Information Centre. These are available to download from the IC website.
This is an exciting development. Kidney Services has the first speciality-wide mandated operational information standard. This will be the basis of our quality metrics recently given so much coverage in the press. Taking into account Trusts, UKRR and UKT, there have been over 120 people outside the Information Centre involved with the project. Just within NHS trusts; from named contacts that we have worked with and people who responded to the consultation, I know of 96 individuals in 36 trusts, of which 54 were clinical staff, 18 Allied Health Professionals, 16 Informatics staff and 8 general managers. I am grateful to Bradford, Bristol, Derby, Exeter, Leeds and Norwich, the demonstration sites who have been able to return the whole dataset.
Thursday, 6 November 2008
Tuesday, 4 November 2008
Raising awareness of kidney disease
Tim Statham, CEO of the National Kidney Federation (NKF) sent me a link to these 7 raising awareness posters which can be used in conjunction with World Kidney Day (12 March 2009).Getting the public to understand kidneys in the way they understand cholesterol is a key long-term goal. The kidneys are such amazing organs, in both health and disease, that the woman on the top of the Clapham omnibus should be interested. The fact that acute kidney injury is so common - over 5% of hospital admissions, and that chronic kidney disease even moreso, affecting over 10% of the adult population, means whoever you are reading this you must know many people with kidney disease.
Over the last year when I have been sitting on trains working away with kidney papers strewn around me, my fellow passengers frequently remark about a parent or relative who has recently been found to have kidney disease. The knowledge they have however is often pretty poor or downright wrong.
Those of you who have heard me talk know that I often quote Sir Muir Gray "knowledge is the enemy of disease" indeed I have a slide of that title showing the graph (from Strippoli et al. JASN 15:411-419, 2004) of randomised control trials in different medical disciplines. It's a cause of frustration that kidney research has fewer trials than all the other big killers. Knowledge is more than data and results from trials. Raising the knowledge base about healthy kidneys and how to keep them as healthy as possible is now a real opportunity given the visibility that the introduction of a chronic kidney disease domain into the Quality and Outcomes Framework and the systematic reporting of estimated GFR has given kidney disease.
So wherever you are working why don't you put one or more of these posters up. They will get people thinking and asking questions. If you are a teacher like my wife Marie and sister in law Barbara or you work directly with groups of people of any age you have a golden opportunity. Take it.
Changes to the law; but why involve people in their care and their services?
The simple answer to that question is involvement leads to satisfaction and yet we know that about half of all hospital inpatients say that they are not as involved as they want to be in decisions about their care. Those who are not as involved in the decisions as they would like to be are less likely to understand the purpose of their medicines or other interventions and are unlikely to understand the problems or side effects of treatments. This will affect adherence and outcomes. We know that when people feel fully involved in treatment decisions that approaching 90% are satisfied with services and this falls to only 50% when people feel excluded from the decision making process (http://www.pickereurope.org/).
The draft NHS constitution hasn’t occupied much space in the papers, waves or indeed this blog in comparison to, for instance, the Richard Review or top up payments Lord Darzi’s promise is “you will be involved”. The constitution says patient should have the right to full information about all available treatments, the right to be involved in discussions and decisions about their care. That fits with Standard One of the Renal NSF: “all children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourage partnership in decision-making with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.
It sounds good or does it sound like motherhood and apple pie?
The NHS Act 2006 section on the “duty to involve” came into force this week on 3 November 2008. This duty requires NHS organisations to involve users of services in planning and provision of services, the development and consideration of proposals for change in the way services are provided and decisions affecting the operation of services. Trusts should be taking this statutory obligation seriously, the kidney patients and KPAs should be encouraged to participate to ensure that people with kidney disease have a voice in this process.
The NHS Next Stage Review says “you will be involved. The local NHS will involve patients, carers, the public and other key partners. Those affected by proposed changes will have the chance to have their say and offer their contribution. NHS organisations will work openly and collaboratively”.
The duty to involve is not just an organisational duty. It is also a responsibility of each of us in the health services and that’s not just clinicians. People want information about the services they use, people want information about the options available to them, people want information about what their condition’s likely to mean for them and what the medicines and other treatments might and might not do. Some of this is available in the excellent Kidney Research UK DVD “living with kidney disease”, we are beginning to put information about services on NHS Choices but there’s no substitute for a face to face discussion with individuals – explaining out patient appointment procedures, explaining why a change in diet can be beneficial or engaging in a discussion about the uncertainty of future events. Involvement leads to satisfaction, satisfaction leads
to better outcomes, it’s our duty to involve people in decisions about their care.
Real involvement: working with people to improve services
The draft NHS constitution hasn’t occupied much space in the papers, waves or indeed this blog in comparison to, for instance, the Richard Review or top up payments Lord Darzi’s promise is “you will be involved”. The constitution says patient should have the right to full information about all available treatments, the right to be involved in discussions and decisions about their care. That fits with Standard One of the Renal NSF: “all children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourage partnership in decision-making with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.
It sounds good or does it sound like motherhood and apple pie?
The NHS Act 2006 section on the “duty to involve” came into force this week on 3 November 2008. This duty requires NHS organisations to involve users of services in planning and provision of services, the development and consideration of proposals for change in the way services are provided and decisions affecting the operation of services. Trusts should be taking this statutory obligation seriously, the kidney patients and KPAs should be encouraged to participate to ensure that people with kidney disease have a voice in this process.
The NHS Next Stage Review says “you will be involved. The local NHS will involve patients, carers, the public and other key partners. Those affected by proposed changes will have the chance to have their say and offer their contribution. NHS organisations will work openly and collaboratively”.
The duty to involve is not just an organisational duty. It is also a responsibility of each of us in the health services and that’s not just clinicians. People want information about the services they use, people want information about the options available to them, people want information about what their condition’s likely to mean for them and what the medicines and other treatments might and might not do. Some of this is available in the excellent Kidney Research UK DVD “living with kidney disease”, we are beginning to put information about services on NHS Choices but there’s no substitute for a face to face discussion with individuals – explaining out patient appointment procedures, explaining why a change in diet can be beneficial or engaging in a discussion about the uncertainty of future events. Involvement leads to satisfaction, satisfaction leads
to better outcomes, it’s our duty to involve people in decisions about their care.Real involvement: working with people to improve services
Monday, 3 November 2008
BREAKING NEWS: Kidney Research UK raises the bar ...
Kidney Research UK has been awarded a substantial grant of £449,141 from the Big Lottery Fund to run a 4 year project to examine current best practice in end of life care for kidney patients from minority ethnic groups and to find ways to help them better cope with their conditions.
Nearly 20% of the 6000 people awaiting a kidney transplant are from a South Asian background. Many of these patients will not be suitable to receive a transplant due to ill health or lack of matched organs and they may therefore require end of life care.
Read the full press release here
Nearly 20% of the 6000 people awaiting a kidney transplant are from a South Asian background. Many of these patients will not be suitable to receive a transplant due to ill health or lack of matched organs and they may therefore require end of life care.
Read the full press release here
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