Barnsley renal unit have been running a Personal Health Budget (PHB) pilot for renal patient transport over the past year. The Barnsley team encountered quite a few barriers to establishing this pilot including having to separate out the financial element of the renal transport contract from the block contract which NHS Barnsley holds with the Yorkshire Ambulance Service.
The following typical day for one of the patients enrolled in the pilot provides some insight into the benefits that can be realised.
PTS do not give the patient a ‘pick up’ time, they are told to be ready a few hours prior to their appointment, which for Patient X, who has to be on the unit by 7.30am to start treatment at 8am, may be from 5am onwards. Patient X’s treatment finishes at 11.45am, however, he has to wait for two other patient’s whose treatment may finish one hour after his, before they are driven home and he is then the last person to be dropped off at home, which means that he arrives home, at times two hours after he has finished his treatment, which equates to a nine hour session, from waiting to be picked up, to being dropped off back at home.
Having the PHB will allow Patient X to be picked up at a set time, arriving at the unit 30 minutes prior to his appointment, arriving home 30 minutes after he finishes his treatment and reducing his day from nine hours to five and a half hours. Taking into account that this happens three times per week, this means that Patient X will have an extra ten and a half hours to himself per week, which is a large proportion of his life.
Patient X is very optimistic about having a PHB and is absolutely certain that it will bring about a massive improvement upon his quality of life.
If that’s not enough stimulus to consider PHBs or other solutions to the delays many patients experience, there is a significant financial saving to be made of around £2500 per annum for each patient who opts for a PHB rather than the standard patient transport service.
Given the benefits I am intrigued that only 3 of the potential 64 patients have signed up for the PHB pilot and wonder why that is. The interim analysis does however seem to provide proof of concept that PHBs can work for patients receiving in-centre and satellite haemodialysis, that they can improve experience and quality of care and that they can save money.
Monday, 28 February 2011
Thursday, 17 February 2011
NHS Evidence highlights IV Iron savings
NHS Evidence have rated the move to giving intravenous iron in patients’ homes and community hospitals to be highly effective and efficient at improving quality for patients and savings for the NHS.
The Royal Cornwall team led by Rob Parry and colleagues have provided the case study that demonstrates the potential for cost savings of approximately £14.5M across the NHS in England.
The Royal Cornwall team led by Rob Parry and colleagues have provided the case study that demonstrates the potential for cost savings of approximately £14.5M across the NHS in England.
Thursday, 10 February 2011
Paying for value not volume
Outcomes for people with advanced chronic kidney disease are dependent on meaningful engagement with patients, carers and families and high quality preparation for the chosen modality of renal replacement therapy or conservative kidney care. That needs a committed, skilled and adequately resourced multi-professional team working with “activated” patients.
To support kidney care multi-professional team working new arrangements are been put in place in England for adult services from April 2011. Payment to Trusts for first outpatients visits that are multi-professional will receive a 50% uplift (price for doctors only first visits £198 versus £328 for first MDT visit) with ongoing multi-professional care attracting more than double physician only outpatient attendances (£128 versus £257). These multi-professional outpatient kidney care tariffs are aimed principally at supporting standard 2 and quality requirement 4 of our National Service Framework.
STANDARD TWO: All children, young people and adults approaching established renal failure are to receive timely preparation for renal replacement therapy so the complications and progression of their disease are minimised, and their choice of clinically appropriate treatment options is maximised.
QUALITY REQUIREMENT FOUR: People with established renal failure receive timely evaluation of their prognosis, information about the choices available to them, and for those near the end of life a jointly agreed palliative care plan, built around their individual needs and preferences. People with complex multi-system disorders and those with primary kidney disease or post-transplant receiving high dose immunosuppressive regimes will also be able to benefit from this payment for quality.
People with complex multi system disorders and those with primary kidney disease or post transplant receiving high dose immunosuppressive regimes will also be able to benefit from this payment for quality.
I am confident that the introduction of this payment system for hospitals has the potential to make another step change improvement to the experience and outcomes of care for people with advanced kidney disease and those requiring multi-disciplinary care because of intricate and potentially toxic treatment.
There is a risk of gaming; I think that’s a polite phrase for cheating. Kidney units and Trusts could put a nurse in every clinic and attempt to claim the multi-professional rate for every patient visit. If we do that not only will our patients miss out but we will be found out! Commissioners of kidney care, quite rightly, will not be prepared to pay the premium price to teams who twist the rules for “multi-professional” care that doesn’t add value. What’s more, kidney teams do not have the resources to have a full multi-professional team in every clinic; and we don’t need it.
The multi-professional tariff is not a golden goose – but we could still kill it if we don’t play according to the spirit of the rules. It has been put in place to maintain and improve “preparation and choice”, “conservative kidney care” and safe delivery of “complex immunosuppression”. It should help kidney units target our key resources, our staff, to where we can add most value. Multi-professional clinics should grow allowing more time and support for shared decision making and management resulting in more people receiving pre-emptive transplants, more people receiving peritoneal and home haemodialysis, more people starting haemodialysis via a fistula, better psychological preparation, safer medicines management, fewer complications and less admissions. The flip side is reduction, indeed removal, of no added value clinics for instance for people with stable stage 3 CKD and reduction in inpatient activity and staffing.
Strict interpretation of the rules could equally stifle innovation as well as “break the bank”. Much good multi-professional care is now delivered in patient’s homes or in group sessions – stopping this to bring people in for multi-professional clinics in the outpatients is not in patients’ interests. Commissioners, managers, clinicians and patients need to work together to ensure the model of care achieves the experience and outcomes we all desire and then make the finances fit what the patients want, not the other way around.
The multi-professional tariff has more risk of unintended consequences than the best practice tariff for haemodialysis that will be rewarding dialysis via a fistula from April 2011 but has the potential to be equally effective at leveraging quality if we use it to target our resources and support a different way of working. It will help kidney services navigate a way through the recession, it’s not a way of avoiding the current harsh financial reality facing the public services.
To support kidney care multi-professional team working new arrangements are been put in place in England for adult services from April 2011. Payment to Trusts for first outpatients visits that are multi-professional will receive a 50% uplift (price for doctors only first visits £198 versus £328 for first MDT visit) with ongoing multi-professional care attracting more than double physician only outpatient attendances (£128 versus £257). These multi-professional outpatient kidney care tariffs are aimed principally at supporting standard 2 and quality requirement 4 of our National Service Framework.
STANDARD TWO: All children, young people and adults approaching established renal failure are to receive timely preparation for renal replacement therapy so the complications and progression of their disease are minimised, and their choice of clinically appropriate treatment options is maximised.
QUALITY REQUIREMENT FOUR: People with established renal failure receive timely evaluation of their prognosis, information about the choices available to them, and for those near the end of life a jointly agreed palliative care plan, built around their individual needs and preferences. People with complex multi-system disorders and those with primary kidney disease or post-transplant receiving high dose immunosuppressive regimes will also be able to benefit from this payment for quality.
People with complex multi system disorders and those with primary kidney disease or post transplant receiving high dose immunosuppressive regimes will also be able to benefit from this payment for quality.
I am confident that the introduction of this payment system for hospitals has the potential to make another step change improvement to the experience and outcomes of care for people with advanced kidney disease and those requiring multi-disciplinary care because of intricate and potentially toxic treatment.
There is a risk of gaming; I think that’s a polite phrase for cheating. Kidney units and Trusts could put a nurse in every clinic and attempt to claim the multi-professional rate for every patient visit. If we do that not only will our patients miss out but we will be found out! Commissioners of kidney care, quite rightly, will not be prepared to pay the premium price to teams who twist the rules for “multi-professional” care that doesn’t add value. What’s more, kidney teams do not have the resources to have a full multi-professional team in every clinic; and we don’t need it.
The multi-professional tariff is not a golden goose – but we could still kill it if we don’t play according to the spirit of the rules. It has been put in place to maintain and improve “preparation and choice”, “conservative kidney care” and safe delivery of “complex immunosuppression”. It should help kidney units target our key resources, our staff, to where we can add most value. Multi-professional clinics should grow allowing more time and support for shared decision making and management resulting in more people receiving pre-emptive transplants, more people receiving peritoneal and home haemodialysis, more people starting haemodialysis via a fistula, better psychological preparation, safer medicines management, fewer complications and less admissions. The flip side is reduction, indeed removal, of no added value clinics for instance for people with stable stage 3 CKD and reduction in inpatient activity and staffing.
Strict interpretation of the rules could equally stifle innovation as well as “break the bank”. Much good multi-professional care is now delivered in patient’s homes or in group sessions – stopping this to bring people in for multi-professional clinics in the outpatients is not in patients’ interests. Commissioners, managers, clinicians and patients need to work together to ensure the model of care achieves the experience and outcomes we all desire and then make the finances fit what the patients want, not the other way around.
The multi-professional tariff has more risk of unintended consequences than the best practice tariff for haemodialysis that will be rewarding dialysis via a fistula from April 2011 but has the potential to be equally effective at leveraging quality if we use it to target our resources and support a different way of working. It will help kidney services navigate a way through the recession, it’s not a way of avoiding the current harsh financial reality facing the public services.
Tuesday, 8 February 2011
HSJ highlights increasing acute kidney injury (AKI) costs
The Health Service Journal has picked up on the large increase in kidney care spending identified in the recently published programme budgeting:“Latest figures revealing the spiralling cost of treating kidney disease highlight trusts’ failure to tackle the growing problem of acute kidney injury, HSJ has been told.
Data published by the Department of Health this month shows the NHS spent £1.64bn on treating renal problems in 2009-10 – a 23 per cent increase on the previous year.
It was the largest year on year increase of all the major disease categories and now accounts for about £11m annual spending by each primary care trust.
Although some of the increase is due to improved data recording, experts told HSJ a major cause was the rapid growth in acute kidney injury commonly caused by dehydration or poor bloodflow. Activity figures seen by HSJ show the number of hospital admissions for such injuries grew by 11.5 per cent in 2009-10, and the number of bed days used by them grew by 10.1 per cent.
Royal Free Hampstead Trust consultant nephrologist Chris Laing, who is chair of the north central London acute kidney injury network, said up to 20 per cent of people admitted to hospital now have some signs of the problem, yet it often goes unnoticed.
Dr Laing told HSJ that despite previous warnings of the growing problem – it was highlighted in a 2009 National Confidential Enquiry into Patient Outcome and Death report – many hospitals were failing to detect patients early. He said: “There are deficiencies in care and it would not be an overestimate to say this is a major healthcare challenge.
“There is a high prevalence, and it is hugely costly both in patient outcome and financially.
It is preventable and treatable.”
A DH spokeswoman said: “Part of the reason the NHS is spending more treating renal disease, is that acute kidney injury is more frequently being diagnosed and recorded.” She added: “We have asked the National Institute for Health and Clinical Excellence to provide definitive clinical guidance [and are] working with healthcare partners to develop new tools for addressing acute kidney injury, including routine risk assessment for all emergency admissions.” “
Thursday, 3 February 2011
Q & A: How can we get individual Care Plans to become universally applied to all chronically ill patients?
Q: How can we get Individual Care Plans to become universally applied to all chronically ill patients as is laid out in Lord Darzi's report? I ask the question because of concern that the individual care plans developed for renal patients seem to be the only ones produced to date. The consequence is that ICPs may be confined to renal patient care.
While I am a renal patient I do have other health issues. Personally they have involved skin, eye and dental care. There are renal patients who go to diabetic clinics, vascular clinics as well. The underlying point is that we need to be treated as a whole person. That should also include mental and welfare care.
It looks as if hospital trusts are not making any effort to develop ICPs for all chronically ill patients. I also believe that there is confusion with objective-based care plans that have been in place for many years.
How can we get ICPs developed by patients with support from renal staff? At the moment I get the impression there is a real risk they will be staff run for patients. How can patients become empowered to take responsibility in both developing and applying their own ICPs when they want to? Simon Lloyd
A: Dear Simon
Thank you for your question about getting care plans that work for patients as the norm not only for people with kidney disease but for everyone with a chronic or long term illness too. I would be interested to know your (and other patients’) thoughts on how this can be achieved.
I agree that it has to be our goal not only because, as you say, people with kidney disease often have other conditions such as hypertension or diabetes and many have social or psychological needs that require consideration or incorporation into their care plan.
Care planning is a lot more than giving an individual a standard sheet or booklet. It’s a process that involves a dialogue between the patient and perhaps family members or carers, and the healthcare team. Simon, you make the point that it must be about the whole person not just their kidneys or their dialysis regime; indeed it’s not just about illness.
Care planning is part of the process of helping an individual achieve optimal outcomes as well as the ambitions or aspirations they set for themselves.
So the beliefs and values of the patient are every bit as important as the diagnostic skills and discussion of treatment options clinicians bring to care planning.
Satisfactory clinicians treat the disease competently and safely; good clinicians treat the whole patient and great clinicians treat the person in the context of their social, cultural and family circumstances.
I remember when I first raised the issue of care planning some years ago now. The doctors thought it was something the nurses did but were also concerned they might not have enough time if yet more patient documents had to be completed.
On one kidney unit, that will remain nameless, I was told that everyone had a care plan. I was delighted and asked if someone could tell me more about it, what approach they had taken to achieve such comprehensive coverage and if it might be possible to pinch their ideas and solutions for others to use across the country? I soon realised why my enthusiasm was being met by quizzical looks. I was handed a dialysis prescription chart with the dry weight, heparin loading dose, needle gauge and flow rates scribbled on a poorly photocopied, off-centre sheet. I was barely able to hide my disappointment.
Perhaps it’s the same for a patient when they are given a standard “care plan“ that’s supposed to cover everything but in fact might not cover anything important to the individual at that point in time. A care plan is not a treatment plan.
Treatment plans are of course necessary and it’s right and proper that they should be available and understandable to patients. In many instances these could and should be part of the patient held record. For kidney patients such plans can be kept in the electronic Renal Patient View.
I think most people in the kidney world now appreciate that care planning is much more a traditional treatment plan, but there’s still concern that staff may not have enough time for this additional task.
Care planning and the shared decision making that should occur as part of producing the care plan takes time and often will not be accomplished in one interview. If someone is considering dialysis options, or end of life options, or just the risks and benefits of different medicines given their own particular circumstances, individuals need time to come to terms with the diagnosis and prognosis and to discuss and explore how these options might be best assimilated into their life.
However, an informed and in-control patient supported by the various care teams they need - dermatology, ophthalmology and dental as well as renal in your case, Simon, has both a better experience of care and better outcomes than if, as you put it “care planning is staff-run for patients”. The empowered person with any long term condition is better able to manage their own care than a passive "done to" patient.
The empowered patient route will often lead to less outpatient visits, fewer complications, less anxiety and depression and the need for less inpatient care overall. Investing in care planning saves time and resources overall.
Our challenge then is to make the case for more face to face listening and talking time as a legitimate health resource currency.
Listening to patient stories is not wasted time, explaining options and their potential impacts including side effects and limitations is time well spent.
People like you, Simon, and the National Kidney Federation have to help lead this cultural change.
We need to not only give permission for patients to set the agenda but also to encourage this. People should be prompted to bring their questions to clinics and kidney units, to say up-front what they want out of this particular review and to go away with a care plan that reflects their needs as a whole person.
Healthcare professionals are good at communication, it’s a core clinical skill; but we have less of a track record of working in partnership with patients to achieve useful, comprehensive care plans.
This is something I often talk about with my Tsar colleagues who cover other areas. How do we get this to be the norm and how do we make sure they are integrated so patients have one care plan they own into which all the various professionals feed? Well, first perhaps by achieving this in every aspect of our own renal areas of care.
So for renal services this means an individual patient's plan has input from doctors, nurses, pharmacists, social workers, often psychologists, sometimes dialysis technicians, access or transplant surgeons with the plan completely aligned to the patient’s priorities and personal goals.
This could form the basis of linking up to other areas you need to provide support and input into your plan. Some services such as cancer, heart failure and diabetes are further ahead than others but we do have a long way to go.
This is a big mindset shift for healthcare teams, public and patients; a move from “doctor knows best" to "better outcomes are achieved by empowered patients".
One thing we are exploring in kidney services is to pay more for multiprofessional care planning outpatient visits than for routine, standard follow up appointments.
I hope that provides a stimulus for kidney care teams because individuals in our care teams, and that includes patients, are the only people who can make this happen. We need patients to tell us where this is happening already.
I think we have the principles but as a system we need good examples of how to do care planning in practice – it may well take some trial and error but let’s get on with it. Donal
While I am a renal patient I do have other health issues. Personally they have involved skin, eye and dental care. There are renal patients who go to diabetic clinics, vascular clinics as well. The underlying point is that we need to be treated as a whole person. That should also include mental and welfare care.
It looks as if hospital trusts are not making any effort to develop ICPs for all chronically ill patients. I also believe that there is confusion with objective-based care plans that have been in place for many years.
How can we get ICPs developed by patients with support from renal staff? At the moment I get the impression there is a real risk they will be staff run for patients. How can patients become empowered to take responsibility in both developing and applying their own ICPs when they want to? Simon Lloyd
A: Dear Simon
Thank you for your question about getting care plans that work for patients as the norm not only for people with kidney disease but for everyone with a chronic or long term illness too. I would be interested to know your (and other patients’) thoughts on how this can be achieved.
I agree that it has to be our goal not only because, as you say, people with kidney disease often have other conditions such as hypertension or diabetes and many have social or psychological needs that require consideration or incorporation into their care plan.
Care planning is a lot more than giving an individual a standard sheet or booklet. It’s a process that involves a dialogue between the patient and perhaps family members or carers, and the healthcare team. Simon, you make the point that it must be about the whole person not just their kidneys or their dialysis regime; indeed it’s not just about illness.
Care planning is part of the process of helping an individual achieve optimal outcomes as well as the ambitions or aspirations they set for themselves.
So the beliefs and values of the patient are every bit as important as the diagnostic skills and discussion of treatment options clinicians bring to care planning.
Satisfactory clinicians treat the disease competently and safely; good clinicians treat the whole patient and great clinicians treat the person in the context of their social, cultural and family circumstances.
I remember when I first raised the issue of care planning some years ago now. The doctors thought it was something the nurses did but were also concerned they might not have enough time if yet more patient documents had to be completed.
On one kidney unit, that will remain nameless, I was told that everyone had a care plan. I was delighted and asked if someone could tell me more about it, what approach they had taken to achieve such comprehensive coverage and if it might be possible to pinch their ideas and solutions for others to use across the country? I soon realised why my enthusiasm was being met by quizzical looks. I was handed a dialysis prescription chart with the dry weight, heparin loading dose, needle gauge and flow rates scribbled on a poorly photocopied, off-centre sheet. I was barely able to hide my disappointment.
Perhaps it’s the same for a patient when they are given a standard “care plan“ that’s supposed to cover everything but in fact might not cover anything important to the individual at that point in time. A care plan is not a treatment plan.
Treatment plans are of course necessary and it’s right and proper that they should be available and understandable to patients. In many instances these could and should be part of the patient held record. For kidney patients such plans can be kept in the electronic Renal Patient View.
I think most people in the kidney world now appreciate that care planning is much more a traditional treatment plan, but there’s still concern that staff may not have enough time for this additional task.
Care planning and the shared decision making that should occur as part of producing the care plan takes time and often will not be accomplished in one interview. If someone is considering dialysis options, or end of life options, or just the risks and benefits of different medicines given their own particular circumstances, individuals need time to come to terms with the diagnosis and prognosis and to discuss and explore how these options might be best assimilated into their life.
However, an informed and in-control patient supported by the various care teams they need - dermatology, ophthalmology and dental as well as renal in your case, Simon, has both a better experience of care and better outcomes than if, as you put it “care planning is staff-run for patients”. The empowered person with any long term condition is better able to manage their own care than a passive "done to" patient.
The empowered patient route will often lead to less outpatient visits, fewer complications, less anxiety and depression and the need for less inpatient care overall. Investing in care planning saves time and resources overall.
Our challenge then is to make the case for more face to face listening and talking time as a legitimate health resource currency.
Listening to patient stories is not wasted time, explaining options and their potential impacts including side effects and limitations is time well spent.
People like you, Simon, and the National Kidney Federation have to help lead this cultural change.
We need to not only give permission for patients to set the agenda but also to encourage this. People should be prompted to bring their questions to clinics and kidney units, to say up-front what they want out of this particular review and to go away with a care plan that reflects their needs as a whole person.
Healthcare professionals are good at communication, it’s a core clinical skill; but we have less of a track record of working in partnership with patients to achieve useful, comprehensive care plans.
This is something I often talk about with my Tsar colleagues who cover other areas. How do we get this to be the norm and how do we make sure they are integrated so patients have one care plan they own into which all the various professionals feed? Well, first perhaps by achieving this in every aspect of our own renal areas of care.
So for renal services this means an individual patient's plan has input from doctors, nurses, pharmacists, social workers, often psychologists, sometimes dialysis technicians, access or transplant surgeons with the plan completely aligned to the patient’s priorities and personal goals.
This could form the basis of linking up to other areas you need to provide support and input into your plan. Some services such as cancer, heart failure and diabetes are further ahead than others but we do have a long way to go.
This is a big mindset shift for healthcare teams, public and patients; a move from “doctor knows best" to "better outcomes are achieved by empowered patients".
One thing we are exploring in kidney services is to pay more for multiprofessional care planning outpatient visits than for routine, standard follow up appointments.
I hope that provides a stimulus for kidney care teams because individuals in our care teams, and that includes patients, are the only people who can make this happen. We need patients to tell us where this is happening already.
I think we have the principles but as a system we need good examples of how to do care planning in practice – it may well take some trial and error but let’s get on with it. Donal
Wednesday, 2 February 2011
Bumper return to the national vascular audit
60 out of a possible 63 kidney units have returned data to the vascular access audit. Over half had 100% data completeness and overall data completeness was 97.5%.
This represents data on 2,353 incident dialysis patients and is a fantastic achievement. It underlines the importance the kidney community places on clinical audit and the central role vascular access has in improving the experience of care and outcomes for people with end stage renal failure.
The audit closed at midnight on 31 January 2011, an hour after the football transfer deadline, but no less exciting!
Well done to all concerned – the National Kidney Care Audit Team at the Information Centre, Richard Fluck our national clinical lead, colleagues at the Renal Registry and of course each and every one of the nurses, doctors and renal unit managers who helped collect and return the data.
The full report, including linkage to the health protection agency bloodstream infection dataset and hospital episode statistics will be out in the summer.
This represents data on 2,353 incident dialysis patients and is a fantastic achievement. It underlines the importance the kidney community places on clinical audit and the central role vascular access has in improving the experience of care and outcomes for people with end stage renal failure.
The audit closed at midnight on 31 January 2011, an hour after the football transfer deadline, but no less exciting!
Well done to all concerned – the National Kidney Care Audit Team at the Information Centre, Richard Fluck our national clinical lead, colleagues at the Renal Registry and of course each and every one of the nurses, doctors and renal unit managers who helped collect and return the data.
The full report, including linkage to the health protection agency bloodstream infection dataset and hospital episode statistics will be out in the summer.
Tuesday, 1 February 2011
The Care Record Guarantee
My good friend Harry Caton chairs the NIGB – oh what’s the NIGB? The NIBG is the National Information Governance Board for Health and Social Care – oh very clear! Well, it’s the body that ensures information about you and I, that is patients, is handled appropriately. It’s recently set out a Care Record Guarantee that aims to support the highest quality of healthcare. We also need information and evidence that will improve health and care through research so individual records are used for both planning personal care but also for understanding population healthcare.
The Guarantee states that the people who care for you use your records to:
The Guarantee states that the people who care for you use your records to:
- Provide a good basis for all health decisions made by you and healthcare professionals;
- Allow you to work with those providing care;
- Make sure your care is safe and effective and
- Work effectively with others providing you with care.
It’s important to appreciate that the records are now your records that we/healthcare professionals use to record your decisions and to try and improve your experience of care and clinical outcomes.
Others may also need to use records about you to:
- Check the quality of care (such as clinical audit by, for instance, the Renal Registry);
- Protect the health of the general public;
- Keep track of NHS spending;
- Manage the health service;
- Help investigate any concerns or complaints your or your family may have about your healthcare;
- Teach healthcare professionals; and
- Help with research.
The law gives you the right to:
- The common law duty of confidentiality;
- Protection in the way information is handled under the Data Protection Act 1998; and
- Privacy under the Human Rights Act 1998.
It also gives you the right to:
- Ask for a copy of all records about you held in paper or electronic form (you may have to pay a fee); and
- Choose someone to make decisions about your healthcare if you become unable to do so (this is called “lasting power of attorney”).
It’s good practice for people in the NHS who provide your care to:
- Discuss and agree with you what they are going to record about you;
- Give you a copy of letters they are writing about you; and
- Show you what they have recorded about you, if you ask.
Many doctors and nurses now write directly to you as patients with a copy to the general practitioner or other specialists who may be involved in your care. Of course kidney patients in the UK are leading the way with over 10,000 users of renal patient view (RPV) and patients are working with the RPV team, supported by NHS Kidney Care, to expand what’s on offer through RPV to anyone with kidney disease.
Find out more about the commitments at http://www.nigb.nhs.uk/
What if?
“The triangle of care: service user, professional and carer” was recently published and provides a guide to best practice in acute mental healthcare. 1.5 million people care for someone with a mental illness in the UK; that’s one in every 40 people or one in 4 of the UK’s 6 million carers.
Alan Worthington, one of the authors and a carer with a long experience of engaging with acute services on behalf of his family, asked “What if?”
WHAT IF? – A Carer’s journey through acute care services
(With apologies to Rudyard Kipling)
What would help carers and service users?
When asking for help, what if…
To ensure proactive engagement carers need to be part of the care planning and treatment process across the care pathway, ie for both inpatient and home treatment, the service should have clear policy and mechanisms to ensure these are routinely used, including:
Alan Worthington, one of the authors and a carer with a long experience of engaging with acute services on behalf of his family, asked “What if?”
WHAT IF? – A Carer’s journey through acute care services
(With apologies to Rudyard Kipling)
What would help carers and service users?
When asking for help, what if…
- both my relative and I had a phone number to call if an acute situation were to develop
- as a carer I could call the staff, tell them the need was urgent and I would get a quick response
- when assessing my relative, the worker(s) talked to me as well, so as to get a clear picture of how to help
- the worker(s) tried to get a good picture of what my son was like when he was well and aspired to help him to return to this.
- staff gave explanations and offered a choice of options
- treatments were explained and strategies for managing the medication were given
- as a carer I was given the same sort of information, support and coping strategies that are now seen in many inpatient settings
- I was given information about the right things to do, with staff offering me reassurance when my relative became a person I couldn’t recognise.
- the service was close enough to easily keep up family support
- the service could offer alternatives to a hospital bed.
- the staff gave time each day to have good conversation and give support
- the ward provided a warm friendly atmosphere with things of interest to do
- there were groups to explore general life and mental health problems, with opportunities to learn from others and develop companionship
- when I visit the ward I was welcomed as a friend and supporter of the work and staff accepted that I wished to contribute for my relative’s benefit and the benefit of others
- I was offered information about the ward and services
- when the named nurse was not available, there was someone else who was willing to talk to me.
At leave or discharge, what if…
- I was involved in the planning and we all worked out “what to do if?” eg if there was a relapse or if the carer became ill
- my relative was given practical help with keeping his medication sorted and help with remembering to take it.
Afterwards, what if…
- when the episode was over, the services asked for feed back and
- that I knew that my relative would be visited
within 2 days of discharge - that I knew that his physical and mental health would be reviewed at regular intervals
- if necessary, we would be offered family therapy or talking therapies.
…then our caring duties would diminish to a point when we could look towards our own recovery
Renal failure is a disease that affects families. During the recent home dialysis roadshows the importance of carers has become even more apparent to me and the key elements to achieving the triangle of care may well be useful to consider for kidney care services. The key element states that:
1) Carers and the essential role they play are identified at first contact or as soon as
possible thereafter
- carers’ views and knowledge are sought, shared, used and regularly updated as
overall care plans and strategies to support treatment and recovery take shape.
- staff need to be aware of and welcome the valuable contribution carers can make and be mindful of carers’ own needs 9
- staff need knowledge, training and support to become carer aware.
To ensure proactive engagement carers need to be part of the care planning and treatment process across the care pathway, ie for both inpatient and home treatment, the service should have clear policy and mechanisms to ensure these are routinely used, including:
- guidelines on confidentiality and for sharing information – a three-way process between service users, carers and professionals
- information release forms and protocols
- advance statement forms and protocols.
- carers’ lead or champion for the ward and CRHT
- carers’ links delegated for each shift.
5) A carer introduction to the service and staff is available, with a relevant range of information across the acute care pathway, including:
- an introductory letter from crisis team or ward explaining the nature of the service provided and who to contact, including out of hours
- an appointment with a named member of the team to discuss their views and involvement
- ward orientation/induction procedure and leaflet
- carer information packs
- discharge planning and aftercare support.
6) A range of carer support services is available, including:
- carer support
- carer needs assessment
- family work in acute care.
There also needs to be regular assessing and auditing to ensure the six key elements of carer engagement exist and remain in place.
In addition, there also needs to be regular assessment and auditing to ensure that the 6 key elements of care engagement exist and remain in place.
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