Kidney Patients Role in Improving Care

Q: The publication of the new Atlas of information about kidney services provided across the country clearly indicates that there is a huge variation in services patients receive, depending on where they live. This post-code lottery is both unfair and unacceptable. What can kidney patients and KPAs do to improve the provision in their area?

A: Yes, it is a postcode lottery and yes, it is both unfair and unacceptable. The Atlas of Variation in Healthcare for People with Kidney Disease collates data across the patient pathway from early diagnosis, choice of type of dialysis, timing of transplant listing, acute kidney injury and even transport for haemodialysis. It is accompanied by a series of case studies and commentaries provided by experts in kidney care highlighting innovations that could be adopted in your kidney unit. Data from a range of routine sources, the Renal Registry, NHS Blood and Transplant and National Audits have been brought together to provide information about how services work and to give an insight into the quality of care provided locally to people with kidney disease.

Of course, it is important to remember that one size does not fit all. For instance, there is not a magic number we should aim for in the percentage of people receiving home haemodialysis or doing peritoneal dialysis. What we need to aim for is that everybody approaching the need for dialysis gets clear information, is counselled and is supported to make the best choice for them. That is unlikely to result in the same percentage of patients being on peritoneal dialysis in Middlesbrough as in West London. Some variation is appropriate to the needs of the local population being served, but in other cases the variations are unwarranted (unwarranted is the polite for - postcode based, unfair and unacceptable) and cannot be explained on the basis of population differences. No one wants to wait longer than is necessary to be transplant listed. No one chooses to be referred so late they have to start dialysis as an emergency in an unplanned way. Very few people would choose to be managed in a kidney service that does not return accurate data to the Renal Registry because that would mean that the unit is not measuring quality of care. Where peritoneal and home haemodialysis rates are low it is likely many more would choose these options if clinical and management teams worked to break down the barriers to home dialysis. 

The NHS Constitution for England brings together, for the first time, the principles, values, rights and responsibilities that underpin the NHS. For patients, these rights include, for example, the right to be treated in a timely manner - this includes live donor transplantation; the right to be involved in all decisions about their care - this includes the right to be told about and supported in having conservative kidney care; and the right to be treated with dignity and respect. For the Constitution to have a real impact for people with kidney disease, people with kidney disease themselves will need to use the Constitution to help drive improvements to patient care and experience in every clinical encounter and every kidney service. The Atlas of Variation is a great place to start asking questions and begin to explore how together patients and healthcare professionals in partnership can provide answers, innovations and improvements in your own kidney unit. Kidney Patient Associations should be working with hospital Trusts, Kidney Care Networks and the new Local Authority Health and Wellbeing Boards to examine the data and set ambitious plans for action where it is needed.

Unwarranted variation in healthcare is of paramount importance to patients, their carers and loved ones. Its existence can signify that the quality of care that someone received in one part of the country may not be good as if they lived elsewhere. Ascertaining why geographical differences in the quality of care occur is complex and difficult but necessary so that equitable healthcare is available for all regardless of their address. Here are some questions you might want to consider putting into your own words when you have looked at the Atlas, which shows your local data compared to other units and localities.

• Chronic Kidney Disease 

Detecting CKD is easy requiring only a blood and urine test. If you or a relative are seeing your GP for a long-term condition such as diabetes, ask them whether you need to be screened for CKD. If you have been given a diagnosis of CKD, ask whether your blood pressure is being maintained in the best range for stopping progression of CKD. Are you on the best blood pressure medication possible? If you are taking, several medications are they safe to be taken in CKD?

• Renal Replacement Therapy

KPAs should ask their renal units if the uptake of RRT matches the prevalence of CKD in the area? How does your unit liaise and foster links with the GP practices? How is your unit planning for their RRT capacity to meet the local demand?

One of the maps shows the proportion of patients who needed to start RRT within 90 days of being referral. If you are on dialysis, how did you start dialysis? Was it planned, with adequate time for you to decide what kind of dialysis you needed? Or did you begin on haemodialysis with a line before having a discussion of whether you would prefer another type of RRT?

Some units have no patients on home dialysis whereas others have almost a third. KPAs should ask their units how much home therapy they are providing. Patients who dialyse at home have better outcomes than those who dialyse in hospital. Is there a discrepancy between provision of home HD or PD? If there is, ask why. You should have the choice of how and where you receive dialysis. 

• Transplantation

 There are large variations in the rate of live kidney donor transplantation across England and the amount of pre-emptive transplantation being performed. If you receive RRT, when was transplantation discussed with you? KPAs should ask whether their unit has a "transplant first" culture. How many patients receive a transplant before dialysis is required? Though transplantation is not appropriate for everyone, it is the form of RRT with the best outcomes.

• Acute Kidney Injury

AKI is a rapid decline in kidney function. People with CKD are particularly susceptible to AKI. In many cases, AKI is easily avoidable through early recognition. KPAs should ask whether their trusts have early warning alert systems in place. And is a clinical audit of AKI being performed?

• Transport

Transport to dialysis is a frequent cause of distress for patients. KPAs: ask your unit who is responsible and accountable for patient transport arrangements. Are there incentives for patients who can make their own way to do so?

None of the data in the Atlas is new. It is all drawn from the standard NHS databases and various annual reports. In a way, the Atlas of Variation is holding a mirror up for us to see the variation in general practice, kidney units and hospitals across England. It shows the good, the bad and the ugly of kidney care. Of course, every kidney service cannot and indeed should not be the same. Communities in Devon and Cornwall are different from those in Birmingham and Coventry. That said, the Atlas does reveal that where you live determines the service you will receive and it should provide a stimulus for healthcare planners and funders, General Practitioners and kidney care healthcare professionals and most important of all patients and local kidney patient associations to examine the quality of care provided in your kidney units and general practices.

I would urge all kidney patients and carers with their local KPAs to look at the maps; to discuss the maps with doctors and nurses and Chief Executives; to ask questions and expect to be involved in drawing up action plans to improve care. People with kidney disease are very powerful, few patients realise that questions and comments from patients are heard and do make a difference. That is quite right, only patients and carers know what it is really like to have kidney disease, only patients and carers can really judge the quality of service they receive. The NHS is going through difficult times, patients must shape the service. Use the Atlas of Variation to do that. Ask those questions and remember, if the answer is "oh well, that's the way it is around here", keep asking "why?" until you get a proper answer. People reading Kidney Life have the understanding, you have the power, and you therefore, have the responsibility to help improve services in your local community. No one else can do it better.

Published in Kidney Life - Autumn 2012

  

My unit won't let me dialyse at home- Why not?

'I want to dialysis at Home – but my unit is not keen saying that although I am a suitable patient they do not have the Nurses or the resource for such an experiment – neither could they afford it.  I am very disappointed, particularly as I would have thought dialysing at home was cheaper for the trust. I certainly think that it would be better for me.  I do not wish to name my Trust as I don’t want to rock any boats – but the decision has made me very sad.'

Dear Mr. D,

I got your question the evening Marie my wife and I were decorating our Christmas tree. We were excitedly putting the lights and trinkets that bought back memories.  I told Marie about your predicament, and she got angry. I was frustrated given all the work the Kidney Community has done to promote access to home haemodialysis.  There we were like millions of others preparing for the family to descend for Christmas, thinking about   parents, brothers, sisters, children and even grandchildren but not really concerned about travelling for the holidays. Absolutely no thought about dietary or fluid restrictions - well we thought about food and drink but not about any restrictions. In addition, there in my inbox was your question. It did make me sad that you too were not able to have Christmas looking after yourself, dialysing when you wanted to in your own home with your family and friends.

The National Service Framework for renal services was published almost exactly 8 years ago. One of its key aims was to improve the outcomes for people on dialysis and to maximise their rehabilitation, quality of life and survival (standard 4). This standard requires that high quality clinically appropriate dialysis is designed around individual needs and preferences. Care should be responsive to individuals’ needs and personal preferences so that their choice of clinical appropriate treatment options can be delivered   (standard   2).   These entitlements have now been further strengthened in the NHS constitution that puts patients at the centre of the system- why else is the NHS there? In addition, the constitution claims quality is the only organising principle of the NHS. It should be but we are not there yet!

Home dialysis offers a range of benefits for suitable patients, tailoring dialysis  to  individual  needs, avoiding transport costs and inconvenience and  allowing  the individual to be more in control of their own treatment, health  and life. Many home haemodialysis patients find their energy levels restored and all enjoy the relaxation in fluid and diet restrictions that follow being established on home treatment. Stopping phosphate binders and needing far fewer drugs overall makes it easier to remember and take those still needed. Several recent scientific studies have also shown improvement in patient survival and a reduction in hospitalisation for those on home haemodialysis.   Most kidney nurses and doctors would argue that for those who are clinically suitable for home therapy, treatment at home is the best medical choice for them. When kidney doctors have been asked, “what kind of dialysis treatment would you choose for yourself if you needed it?” the majority opted for home haemodialysis.  Patient stories are the most powerful of all. Comments such as “it’s as good as being transplanted” and “it’s given me my life back” are the rule.  Jonathan Hope from Guys hospital said to me recently “my life was utterly transformed - I could eat and drink what I wanted, my medications were reduced, I visited hospital less, my symptom burden improved, I had a lot more energy and finally for the first time in 15 years, I began to live my life to the full! "

Of course, not every patient is suitable for home dialysis and not all who are suitable want to take on the role. The impact on carers needs to be carefully considered and discussed. If people do not wish to dialyse at home, they should not have to. Choice means choice. To make informed choice individuals need to understand the treatment options, and their clinical, psychological and social suitability for each potential option. Shared decision-making can then take place. Shared decision-making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. The care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments.  The patient communicates his/her values and relative importance he/she places on the potential benefits and harms. The patient needs time, digestible relevant information and support; the healthcare system and individual health care practitioners need systematic tools such as patient decision aids, consultation skills, particularly active listening and the  detailed  clinical  knowledge to manage the specific and at times complex  and competing  challenges of their many facets of advanced kidney disease.

Your comments about quality and costs are spot on. For those that can and want to dialysis at home it offers better quality than hospital-based dialysis and its certainly less expensive. Neither is it experimental. When dialysis started in the 1970s, it was exclusively a home based therapy.  Back then, patients and carers had to build the dialysis machine for each session and the technical demands were much greater. With the introduction of peritoneal dialysis and improvements in transplantation, home haemodialysis did become the poor relation.  The number of home haemodialysis patients fell but over the last decade since the publication of the National Service Framework, NICE guidelines and the work of NHS Kidney Care, the proportion of people opting for and benefiting from home haemodialysis has again begun to rise. A recent change to the payment systems for trusts makes it an even more attractive option and ensures that trusts will not lose income. Therefore, costs should not be a factor in reaching a decision on what form of dialysis to receive.

My advice is “rock that boat” or get a NKF Advocacy Officer to rock it for you and others. The way you were treated is unacceptable and intolerable. The NHS is there for patients not the other way round. Recently, a colleague described the beginning of shared decision-making as the doctors getting down from their pedestals and the patient getting up from their knees.  Quality can be the only organising principle of the NHS but that will only happen when we all demand a patient centred service where every clinical interaction is about adding value. Stand up and be heard- not only will it benefit you, it will also improve things for people following your example.

My PA, Anne, said “who’s unit is this anyway?  They should be named and shamed!”

Published in Kidney Life Spring 2012

Q & A: Paying for value not volume

Q: Dear Donal, I thoroughly enjoyed reading your article "Paying for value, not volume" in the recent BJRM but I'd be grateful for clarification on what constitutes a multi-professional clinic. I suspect after reading your article that we have similar views on what a multi-professional clinic should be: it would included seeing the renal physician, dietician, access nurse, transplant coordinator, education nurse, pharmacist for medicine reconciliation, vascular access technician etc all at the same visit. However, the DoH definitions seem to be quite different and I've included the relevant parts below:

139. Multi-professional attendances are defined as multiple care professionals (including consultants) seeing a patient together, in the same attendance, at the same time. The TFC of the consultant clinically responsible for the patient should be applied to a multi professional clinic where two consultants are present. Where there is joint responsibility then this should be discussed and agreed between commissioner and provider.

140. Multi-disciplinary attendances are defined as multiple care professionals (including consultants) seeing a patient together, in the same attendance, at the same time when two or more of the care professionals are consultants from different national main specialties.

142. They do not apply if one professional is supporting another, clinically or otherwise, e.g. in the taking of notes, acting as a chaperone, training, professional update purposes, operating equipment and passing instruments. They also do not apply where a patient sees single professionals sequentially as part of the same clinic. Such sequential appointments count as two separate attendances, should be recorded as such in line with existing NHS Data Model and Dictionary guidance on joint consultant clinics

It seems that instead of charging for a multi-professional clinic we should code the attendance with all the other professionals supporting the renal team in outpatients as separate attendances and charge separately.

The problem is the commissioners say that this is new clinical activity and has not been agreed which puts us in a no win position. What would you advise? The other option is to see them in the same room which seems a nonsense. Kind regards, Dr Chris Dudley, Renal Unit, North Bristol NHS Trust

A: Dear Chris, thank you for your comments and for the question regarding the definition of multi-professional attendance. I am sorry for the long delay in replying. The guidance for Payment by Results is long and complex, running to 136 pages.

You have quoted the relevant paragraphs and I think the 'sticking point' is section 139 where there is reference to seeing a patient together in the same attendance at the same time. Strictly speaking multi-professional out patient tariffs only relate to situations where the care professionals are in the same room at the same time, rather than the patient going into multiple rooms to see different care professionals individually, as outlined in paragraph 142.

In many instances of multi-professional kidney care out-patients attendances, individual patients see practitioners sequentially. When that is the case however, there is more often than not a multi-professional team meeting to agree and coordinate management. As mentioned in paragraph 142 of the guidance such meetings in the absence of the patient do not count as multiprofessional or multi-disciplinary clinics either.

However, there is some scope for local flexibilities and details of what is permitted is set out in section 11 of the PbR guidance and in particular paragraphs 428 and 444 et seq. It may be worth noting that the main flexibility is, in defined circumstances, for commissioners and providers to agree to use the national multi professional tariff where this is better for the patient and the NHS.

Strictly speaking the agreed tariff should be less than the national tariff but if mutually agreed this can be by a nominal amount. I would favour such an approach rather than rearranging your clinics to meet the tariff definition at the expense of a clinically determined, and more efficient model of care. I would be guided by the recent comments by Sir David Nicholson in his transition letter of 13 April 2011.

Here he states, “in taking forward decision this year you need to ask yourself two questions:

Will it improve care for my patients?
Will it improve value for tax payers?

If the answer to both is ‘yes’, then it’s the right thing to do.” In the fullness of time I would like to see clearer specification of the services to be provided in multi-professional kidney care clinics, ongoing national clinical audit of outcomes, patient experience and processes within those clinics, and a stronger evidence base for what works to improve quality of care with people kidney disease - my hunch would be that the attitude and behaviours of the team members are likely to be as important as the skills and competencies that are brought together within the multi-professional team.

In the meantime I would advise that the entry and exit criteria for the multiprofessional kidney care clinics are discussed and agreed with commissioners so that where necessary the flexibilities within the system are used to improve the quality of care for patients and value for tax payers. Kind regards, Donal

2 August 2011, 0900am: NHS Kidney Care e-seminar presented by Dr O'Donoghue "Introducing the multi-disciplinary tariff". Register here

428. The following principles for the application of local flexibilities will ensure that we continue to protect the benefit of national tariffs and currencies, whilst allowing for local innovation and material redesign of services:
(a) the flexibility supports the provision of care that is better for the patient and the NHS – obviously, any local flexibility should be supporting better care for patients, whether it is closer to home, more convenient or of higher quality: examples include one-stop shops or see and treat services. A flexibility may also benefit the NHS as a whole, by reducing the costs to the whole health system
(b) the flexibility supports material service redesign or mutually desired outcomes – local flexibilities are not a means of simply reducing or increasing national prices without any change to how services are provided. This would negate the benefits of national pricing. They may, in exceptional circumstances, be a means of enabling the provision of services to patients which would not otherwise be provided
(c) the flexibility is the product of local agreement – with due regard to the PbR Code of Conduct, flexibilities should be agreed in advance by commissioners and providers and, where appropriate local discussions can be supported by SHAs

(d) the flexibility is clearly established and documented – an audit trail for the agreed flexibility is necessary and it should be documented as part of contract negotiations
(e) the flexibility should be time limited and reviewed as appropriate – flexibilities are not set indefinitely. For instance, innovation payments apply for three years. It may be that a local innovation becomes the national norm and the tariff changes to recognise this.

444. Tariff is a fixed price, however in exceptional circumstances, where providers and commissioners agree, they can seek approval to operate a variation to price which is lower, but not higher, than the published tariff, provided that there is no adverse impact on quality, patient choice or competition.

Q & A: Dialysis away from base (DAFB)

Q: Dear Donal, for some time there has been difficulty with funding of Dialysis Away From Base (DAFB) for patients from renal units within the NE, to the point where a certain degree of rationing of funding for DAFB takes place. With the constraints faced by renal units throughout the country due to the current financial climate, and with the imminent arrival of payment by results (PbR) for dialysis, funding for DAFB is becoming an increasingly important issue for both clinicians and patients. In the NE we are becoming increasingly concerned by a number of issues:

1. There is a lack of haemodialysis capacity within the NHS, so many patients have no alternative than to seek DAFB with a private provider.


2. The charges imposed by private providers are usually considerably more than the PbR tariff and some private providers require patients to supply their own dialysers, thereby adding further costs to the base unit.


3. Where capacity in the NHS exists to provide DAFB, NHS providers frequently charge considerably more than the PbR tariff.


4. The base unit will therefore lose out financially as they have to pick up the cost of the shortfall between the holiday DAFB cost and the PbR tariff.

The obvious answer to the problem of funding is to ask patients themselves to make up the shortfall between the holiday dialysis tariff and the PbR tariff. Such a move is likely to find opposition from patients and patient groups, and possibly, clinicians too. We would therefore like to ask for some clarification with regards to this subject, and perhaps make some suggestions for a more level playing field across England (if not the UK as a whole)

• Is guidance forthcoming from NHS Kidney Care and the Renal Association as to whether patients should be expected to pay for the shortfall between DAFB and PbR tariffs?


• If patients are expected to pay for some or the entire shortfall, is there any mechanism whereby patients can receive some financial support? (The concept of a “dialysis-leave budget”: if the patient uses up his or her budget, they then have to pay the extra cost).


• Can there be a national register as to what capacity exists within the NHS for DAFB, and what each unit currently charges for DAFB?


• For NHS units which have capacity to offer DAFB, should there be a national limit as to what is deemed to be an acceptable administration fee?


• Can assurance be given that patients dialysing via a central line will not be refused DAFB in another NHS unit, and that the cost for such patients will remain the PbR tariff plus reasonable administration fee?


• Can clarification be given as to who is responsible for supplying or paying for ESA’s, and that if dialysers are to be supplied by the base unit this cost is deducted from the DAFB cost? Dr Stephen Kardasz, Network Chair

A: Dear Steve, thanks for your question, it is important that patients can dialyse away from base. The introduction of a mandatory tariff should make it easier to arrange DAFB by providing a consistent basis for financial flows. The tariff prices and transitional arrangements apply equally for patients at or away from home. Patients’ requirements for DAFB will vary widely on a patient to patient basis. Patients who need time away for reasons of business, education, family emergencies, bereavement or other reasons should be able to arrange what they require.

The NHS is encouraged to develop agreed local policies for DAFB which will ensure equity while minimising the impact of renal failure on patients’ mobility and these policies need to operate within the framework of the DH guidance mentioned below.

Haemodialysis capacity is often a constraining factor which may limit where DAFB can be offered. The responsibility of the NHS for funding can include paying for dialysis (but not accommodation) privately if the NHS does not have the capacity locally. The charges imposed by private providers are usually considerably more than the PbR tariff. In addition, some private providers require patients to supply their own dialysers, thereby adding further costs to the base unit. Where the NHS is paying for DAFB from a private contractor there is no scope for exceeding the tariff price except where there is an existing contract at a higher price. When the contract is renewed this should be paid for at tariff price from 2012-13. To avoid destabilising existing arrangements, providers and commissioners are allowed to move 50% towards tariff in 2011-12. Detailed guidance on Payment by Results in 2011-12 can be found here. If dialysers are not included in the service provided, but are supplied by the home unit, the amount payable to the away unit would have to be reduced by the cost of these and the balance should be paid to the home unit. Where capacity in the NHS exists to provide DAFB NHS providers also frequently charge considerably more than the PbR tariff. There is no scope for NHS providers to charge additional fees over and above the tariff price.

The base unit will therefore lose out financially as they have to pick up the cost of the shortfall between the holiday DAFB cost and the PbR tariff. Funding arrangements for DAFB, prior to the introduction of tariff for dialysis, has been on a unit-to-unit basis. The home unit agreed the funding level with the away unit and paid accordingly from the block contract it received from the Specialised Commissioning Group or Primary Care Trust. From April 2011, dialysis will be paid for by session. As with other services within the scope of PbR, commissioners will contract for dialysis, making monthly instalments against the contract value, adjusted for actual levels. The arrangement for DAFB will be to follow that already used elsewhere in PbR for Non-Contract Activity where providers will invoice the responsible Specialised Commissioning Group or PCT on a monthly basis for the DAFB activity provided.

With regard to guidance, Department of Health guidance revised in 2007 states that funding for temporary dialysis in England should be provided by the referring unit and this remained the case until the end of March 2011. As mentioned above, from 1 April 2011 this will be paid for by the relevant Specialised Commissioning Group or PCT. Top-up fees cannot be imposed on the patient under any circumstances as the rules about NHS services being free at the point of delivery apply. For the same reasons patients cannot be charged for the costs of drugs. However, if a patient arranges private treatment without getting approval from their home unit (or possibly specialised commissioner – dependent on the policy locally) the patient will be responsible for the full costs of the dialysis.

As mentioned above, there are no circumstances in which a patient can be asked to pay top-up fees for services provided by, or on behalf of, the NHS except where this is provided for in regulations.

Units will only be able to charge tariff price (from April 2012) and from April 2011 they have to move 50% towards tariff price from their existing price in 2010/11. Units may wish to decide locally to develop a register but we have no plans to set one up nationally at present. You may be interested in the Dialysis Freedom website as an example of information that is already available nationally.

With regard to patients dialysing via a central line and assurances that they will not be refused DAFB in another NHS unit, it is not possible to charge an administration fee at present. Units should offer dialysis where there is a clinical need and where they have the capacity regardless of the means of access the patient has. In the same way as for patients dialysing in their home unit, those dialysing away from base via a line should be paid for at the rate for those using a line.

Finally, ESAs are currently excluded from the tariff price (we will be exploring whether it will be possible to include them in the future). Specialised Commissioning Groups or PCTs should pay for these on top of the tariff and patients cannot be charged a top-up fee for their cost. Specialised commissioners will need to consider paying the home or away from base unit for dialysers and where the home unit supplies these, the cost should be deducted from the tariff price paid to the away unit.

During 2011/12 we will be assessing the impact on dialysis away from base on the introduction of a tariff for dialysis to see if any changes need to be made to next year’s guidance. I hope this is helpful, Donal.

Department of Health : DAFB Q & A

Q & A: Will my transplant centre close?

Q: I am worried about the possible closure of selected UK transplant centres so that we have only a limited number of specialised centres, and the impact this will have on travelling times for living donors and all recipients. Do you think that this may end up having a negative effect on transplantation in general? My Transplant centre is Newcastle, which covers an area from the west coast of Cumbria across to the east coast and down as far as Hull. If this plan is put into action, which centres are being considered for specialised status and how will this impact upon my local Transplant centre's patients?

A: Thank you for your question. First of all, let me reassure you; I am not aware of any plans to close any UK transplant centres. The number of kidney transplants being carried out is increasing.

Data from NHS Blood and Transplant show that the annual number of kidney transplants undertaken in England grew by 25% between 2007 and 2010. We want to increase the number of kidney transplants taking place even more, so there should be no reason for any transplant centres to close. The only reason why a transplant centre might conceivably close would be if there were safety concerns – not an issue I am aware of at any of our current centres.

We have a UK Donation Taskforce plan which aims to increase kidney transplants from deceased donors by 50% over five years. That means increasing the number of people receiving a deceased donor kidney from 1450 in 2007/8 to over 2150 by 2012/13. Although it is a complex and serious operation, wherever possible a kidney transplant is the best treatment for someone with kidney failure. Quite simply it means freedom from dialysis and all the health and lifestyle limitations that dialysis entails. While we all work very hard to reduce the risks of infection for dialysis patients, it is still an unavoidable risk. A replacement kidney is a better, safer, more cost effective way for the NHS to treat people with renal failure.

Transplant rejection, greatly feared in the past, is still an issue but modern drugs have reduced the risk considerably. Patients still have to take drugs throughout their lives, but this is a much better prospect than lifetime dialysis. However, as many of us are all too aware, still too few transplants are happening.

The main challenge is that there are far more people waiting for a kidney transplant than there are donor organs available. The shortage of organs for transplantation is not unique to this country but we lag behind some other countries in the number of citizens donating organs and tissue. The problem is exacerbated because the numbers on the waiting list far exceed those being operated on each year, so every year we need to catch up with ourselves, before we can even begin to make inroads into reducing the waiting list. Black and minority ethnic groups are in double jeopardy because they have more need of organs but a reduced pool of donors.

We have a taskforce in place across the NHS to try to make donation the norm rather than the exception. We are working to make sure that all NHS staff are aware of the urgent importance of transplantation and to encourage donors to be identified. Virtually every acute hospital trust in the NHS now has a donation committee, reporting directly to the board on the hospital’s donor rates. They are responsible for closing the significant and unacceptable gap between the numbers of potential organs that could be donated each day in our hospitals with the number that actually are.

I am very aware that this is a difficult area, summarised very well in the previous Chief Medical Officer, Sir Liam Donaldson’s 2006 annual report in the chapter titled ‘The Waiting Game’. It is a highly emotive issue, combining matters of life and death with the law at what is an emotional time for the families of potential donors. So it is understandable why healthcare professionals have sometimes been reluctant to raise the subject of transplantation. However, with surveys showing that while 70% of people want to donate their organs after death only 27% are on the NHS organ donor register, healthcare staff have a responsibility to explore this possibility. For example, on intensive care units, every legitimate opportunity should be taken to retrieve organs from heart-beating donors, after brain stem death has been confirmed.

We are also doing more to promote the organ donor register. A further million people signed up during 2009/10 taking the total to nearly 17.5 million who have pledged to help others after their death. However, this is still nowhere near enough. Estimates suggest that the number on the register would need to double if we are to find organs for all those who need them. It is important that people on the organ donor register make sure that their relatives know their wishes so they can be put into effect swiftly if the need arises.

Of course, unlike other kinds of transplant, kidney transplants can also come from living donors. Living donors now make up around one third of all kidney transplants. This requires greater surgical expertise and co-ordination, with two “patients” involved rather than one, but now that all transplant centres offer this possibility we will see the numbers of transplants continue to increase. The paired donation scheme is now also up and running whereby a potential live donor for a recipient, let’s say their spouse in Newcastle, can if the match is not good enough donate to another kidney patient at the other end of the country in a similar position, in return for their live donor giving a kidney to the Newcastle patient. We are also seeing transplant centres becoming more sophisticated in other ways. For example, every centre is now offering minimally-invasive laparoscopic surgery (also known as keyhole surgery) for live kidney donation operations. Recovery times with this kind of advanced surgery are much quicker, with a lower risk of complications or infections, and patients are back on their feet much sooner. Some units are now also carrying out highly specialised blood group or ABO incompatible transplants. Previously, transplant recipients could only receive organs from a donor with the same blood type as them. This has made it harder to find suitable donors for some patients, particularly those with less common blood types. However, new techniques are making these transplants possible by suppressing aspects of the recipient’s immune system through drugs and treatments that reduce the risk of the donor organ being rejected. Similar techniques can be used for highly sensitised patients. All these new treatment options mean that patients are able to exercise far greater choice about treatment and care. For me this is crucial. For NHS patients there should be ‘no decision about me without me’ and it is vital that the NHS gives patients as much say and control about their treatment and care as possible. For kidney patients, this means that they should be offered choice about how they want to manage their kidney disease at every stage. Patients have a right to choose to be transplant listed as when they are within 6 months of needing dialysis, ideally so that they can have a transplant before they start dialysis if they wish. There is still far too much variation across the country in how long it takes people to exercise their choice to go for transplantation and then to be added to the transplant list.

The latest published data we have, albeit from 2005 shows that on average it was taking 2 years from starting dialysis to be transplant listed – I am expecting to see considerable improvement as this is an unacceptable delay. A change to the NHS 'payment by results' funding system to support more multiprofessional clinics for preparation is helping to ensure that patients get to exercise this choice sooner by introducing financial incentives for kidney units to ensure that patients get transplant listed at the right time for them. This is, I have to say, almost always earlier than currently happens. Patients can also help the NHS up its game here by asking to have these discussions as early as possible.

Therefore, going back to your original question, I see absolutely no reason why any transplant units should close unless there were any concerns about safety. Transplantation, where possible, is the best treatment for renal failure. With all the work going on to increase transplant rates, it is estimated that - if we do as well as we can - by 2018 we can expect to have turned around the steady rise in the number of people on dialysis because more people will have had transplants. As medical science continues to develop, there will be even more options for transplant than there are now. Currently, US surgeon Anthony Atala is experimenting with a ‘3D printer’ that uses living cells to create a transplantable kidney (see Print a Kidney if you don’t believe me!). Printable kidneys may be a long way off, but as we look forward, we can be certain that if we keep up the focus on transplantation and patient choice we will see more and more people receiving life-saving and life-changing kidney transplants and a continuing need for our vital network of transplant centres.



Published in Kidney Life, Spring 2011

Q & A: Operating Framework - 30 day readmissions

Q: Dear Donal, we, along with all other Trusts, have been trying to make sense and work out the implications of the new Operating Framework. With regard to the matter of penalties for 30 day re-admissions I am told that patients on regular outpatient haemodialysis, who are admitted 3x per week for their routine treatment, will NOT be excluded from this measure … meaning that, as I understand it, commissioners will be able to refuse to pay for any emergency admissions that these patients require, because when they return a few days later for routine dialysis, they will be ‘re-admitted’. This is (technical term) bonkers. I’m sure that you will already be aware of the issue, but can I ask if you think it’s going to be possible to resolve it sensibly? And is there anything that we can do to help? Regards, Dr John Firth, Deputy Medical Director; Debbie Morgan Commissioning Lead, Addenbrookes Hospital , Cambridge

A: Dear John & Debbie, thanks for raising this issue. My apologies that it is consuming your valuable time. It would be a complete nonsense if people who were regular attenders for haemodialysis were to be included in the emergency re-admissions non payment policy. I have raised the question directly with the Payment by Results team here at the Department and I can confirm that the Department of Health position is that renal dialysis is excluded from the 30 day emergency re-admissions non-payment policy in 2011/12. Therefore, there is no reason for detailed local discussions and negotiations to ensure that “sense prevails”. The exclusion is based on the technicality that dialysis does not have a mandated national tariff in 2011/12 although it does, as you know, have a mandatory currency with a mandatory 50% transition towards a national tariff price in 2011/12. So here the technicalities are working with us and support common sense.

The national tariff for dialysis itself will of course be mandatory in 2012/13 but it is likely that re-admission policy for 2012/13 will be subject to review and, having now flagged the issue of regular dialysis attenders, I expect that to be taken on board when the financial guidance and instructions are written for 2012-13. I will also be making the current position clear to all our Clinical Directors and Specialist Commissioning colleagues so that valuable time addressing quality and productivity is not squandered on unnecessary discussions. Kind regards, Donal

Q & A: A Coding conundrum for CKD

Q: Dear Donal, connecting for health are telling our coders that the term CKD is not acceptable. To quote:
“I am afraid we have a problem with our Local Policy with you and your team around the stages of CKD, when it is stated on the discharge summary/case notes CKD 1 – 5.
Connecting for Health have informed us that we are unable to assign Chronic Kidney Failure codes to this abbreviation as it is not a mandated instruction in our ICD 10 Clinical Coding Manual (please see attachment above). This means that without the term ‘kidney failure’ written on the discharge summary (which is our source documentation for coding) we can not code CKD as kidney failure.”

Clearly we cannot go back and uneducate all our docs to stop using terms like CKD or AKI. Can you sort out Connecting for Health? Kerry Tomlinson

A: Dear Kerry, thank you for your email highlighting the difficulties you are having in Stoke capturing the coding on Chronic Kidney Disease because of the lack of codes within the current version of ICD-10. I too have taken some advice from the comorbidity coding group within Connecting for Health and on the basis of their advice suggest the following;

First we are assured that version 4 of ICD-10 will contain specific codes and guidance for chronic kidney disease and it's stages. Version 4 will be implemented in the NHS from April 2012 and should provide a robust means of capturing CKD in clinical coding.

Until April 2012 we need to work with the existing ICD-10 codes, which as you appreciate do not contain CKD codes or indeed terribly satisfactory means of capturing CKD using existing chronic renal failure coding. CfH have suggested the following "work around";

"The term Chronic Kidney Disease (CKD), when referring to CKD with stages 1-5 does not exist in the current mandated version of ICD-10.
However at present, for consistency, we must follow the existing index trail for a documents diagnosis of chronic kidney disease, which is:

Disease
- kidney (functional) (pelvis) (see also Disease, renal)
Disease
- renal
- - chronic – see nephritis, chronic
Nephritis, nephritic
- chronic N03.-
N03 Chronic nephritic syndrome
(Fourth character assignment will depend on the additional information
provided in the casenotes.)
As stated by the note on page 680 of ICD-10 Volume 1; an additional
code must be used to identify the external cause (chapter XX) or the
presence of renal failure (N17-N19).

Please note that the presence of renal failure is not always recorded in the patient care record when the clinician has stated that the patient has CKD, and it is not the responsibility of the coder to determine whether a patient has renal failure based on the stage of the chronic kidney disease. Therefore, coders must liaise with their Trust renal physicians on this matter, to ensure that the relevant information is recorded in the patient care record."

In practice I think what it comes down to most is you agreeing a local system where clinicians, aware of the coding restrictions, and coders familiar with their clinicians practice come to a consensus on making the coding work for you for the next 12 months.

I hope that this information is helpful; CfH are well aware of the deficiency in the current coding structure and hence the planned change to a system enabling coding it correctly. Donal

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

Published in Kidney Life, Winter 2010/11

Q & A: Best Practice Tariff for adult haemodialysis

Q: Dear Donal, I speak as someone who would welcome a financial "grenade" to try to prove to our local surgeons and management that dialysis access is worth investing in. Nevertheless even as grenades go I feel that what is proposed and the way it is to be implemented will lead to serious unintended consequences.

In a unit such as ours where approximately 40 % of patients are on peritoneal dialysis and where we struggle to get more than 60% of haemodialysis patients dialysing via permanent vascular access (PVA) we will be heavily penalised by setting the "income neutral" rate for haemodialysis by PVA at 75% never mind 85%. There are three main reasons why we are different or lag behind depending on your point of view:

a) our access to surgical procedures and our surgical success rate are suboptimal.
b) many of our younger and fitter and therefore arguably "fit for a fistula" patients are on PD thus skewing our HD population as regards fistula suitability compared to other units who may have proportionately fewer patients on PD.
c) we have a very low catheter related bacteraemia rate, much lower than that reported for other units, where the need to avoid catheter based access is clearly more pressing. As a result of what they do and do not see many of our patients are simply unwilling to consent to a fistula procedure despite our genuine efforts to promote them. On the basis that "no decision about me, without me" is now one of our guideline principles and we are sometimes asking patients to endure a series of unsuccessful and mutilating operations I can not believe that the ultimate figure of 85% with a functioning fistula is anything like appropriate for our unit.

To impose this central target upon us, and let us be clear this is as much a target as any direct target imposed by New Labour, would leave me hopefully with a slightly more accessible, but perhaps no more successful, surgical vascular access service which is partly good, but, it also leaves me with the ethical conundrum of whether to accept a drop in funding or to coerce or corral patients into having fistulas done when that would not be their wish given a free and fully informed choice. I think our energies should be directed at promoting and incentivizing provider trusts to ensure that surgeons allocate sufficient time and resources to the often technically demanding discipline of vascular access surgery rather than to penalising dialysis units and ultimately the patients as well. Otherwise I shall have the New Year to look forward to discussing with my Trust which members of the multidisciplinary team we will be letting go in order to make ends meet.

The effects of this BPT implemented over this timescale really need to be thought through a little better and some "Localism" allowed to operate in the details of its implementation if we are to avoid causing a lot of distress to patients, at least here in Ipswich. Gerald R Glancey, Consultant Nephrologist

A: Dear Gerald, thank you very much for your letter of 24 December. I would like to say first of all that I very much appreciate your concerns about the introduction of Best Practice Tariff for dialysis and I would just like to take the opportunity to answer a few of your questions and hopefully address some of your concerns.

As you know, the introduction of best practice tariff for dialysis is part of a wider shift in the NHS towards rewarding quality in healthcare services and for providing financial incentives for commissioners and service providers to invest in services that result in better care for patients. At the same time, the NHS is facing an enormous productivity challenge to find savings in the order of £20 billion over the next five years to help resource services in the face of a very tight budget settlement. Unfortunately, this means that every trust will be faced with very difficult decisions about how best to allocate resources. The move towards a mandatory best practice tariff offers renal units a degree of financial security at this time of uncertainty – combining a clear signal of the renal community’s commitment towards better quality care at the same time as offering a stable, nationally mandated, financial settlement. Dialysis services have historically often been used to cross subsidise other areas of activity outwith renal units and any negative impacts on income resulting from tariff should be dealt with at trust level by keeping the income generated from tariff within renal units.

The 75% threshold for definitive dialysis access for 2011/2012 has been set with reference to the Renal Association Vascular Access Guidelines and the Joint Working Party Report on Vascular Access from the Renal Association, The Vascular Society of Great Britain and Ireland and the British Society of Interventional Radiology. The threshold has deliberately been set, following sense check, below their recommendations specifically to allow time for units more reliant on tunnelled lines to move towards the suggested 85% of prevalent dialysis patients dialysing through an arteriovenous fistula. Indeed, even at 85% the best practice tariff remains more conservative than the guidelines by its inclusion of grafts in the higher tariff rate, in recognition of the fact that a proportion of patients cannot have an arteriovenous fistula for technical reasons.

I acknowledge that your rates of vascular access bacteraemias are very low and feel that renal units generally have done fantastically well at improving infection control and reducing bacteraemias. Nonetheless, people with tunnelled vascular access remain at an increased risk of bacteraemias and infection related deaths compared to those with a fistula and so trying to minimise the use of intravenous catheters should remain a priority.

I think that the issue of informed consent that you raise is a vital one and the best practice tariff is in no way meant to be used as a way of limiting patient choice or of coercing patients into undergoing fistula procedures. However, the large variation in fistula use both nationally and internationally is more likely due to the availability and success of local vascular access services rather than reflecting fundamental differences in patient preference. I believe that fully informed consent for a dialysis access procedure could include information about all modalities of renal replacement therapy and conservative kidney care and should be undertaken using principles of shared decision making. Some patients having weighted the pros and cons for themselves, will undoubtedly prefer to have a tunnelled line instead of a fistula or graft but this is unlikely to be more than the 15-25% included in the tariff.

Thank you for highlighting the high proportion of patients choosing peritoneal dialysis in your unit. I have been very keen to promote home based dialysis therapies and unfortunately many units have been less successful at offering these to patients than you have. I understand the challenges that this will have in terms of potentially leading to an older, frailer and more co-morbid haemodialysis population. Some units have achieved both a high rate of PD and high fistula rate, but this can be challenging and may require the trust to invest in better vascular surgery services. In Salford we have always had a strong PD programme and like yourselves in Ipswich have previously had concerns regarding surgical capacity for vascular access. Locally we were able to improve our AVF rate for haemodialysis from 62% to 83% by addressing these concerns and using quality improvement methodology.

Finally, I would just like to conclude by saying that the intention of the best practice tariff is to encourage and provide financial support to locally led innovation in quality improvement. The price signal generated by the best practice element will be felt at trust level, and that signal should lead to an improvement in vascular access services for patients. I am very keen to help support renal units both with the introduction of tariff and with the undoubted
further challenges that will occur over the next few years. Please do let me know if I can help in any way or if you have any further questions or queries I can help with. Donal

PbR 2011/12 Road Testing letter 231210

Q & A: Our son has kidney disease, what should we do?

Q: Our son is a 30 year living and working away from home. He had a diseased kidney removed 20 years ago. At that time we were told that his remaining kidney was fine and that it was working at 75% capacity.

He recently dropped a bombshell on us by telling us that this kidney was now functioning at only 28% and that he has been suffering with recurring bouts of gout in his big toes for which his GP has prescribed Codeine to ease the pain. He has also been told that he need not worry about sticking to his diet any more.

We don't know how much he is not telling us and we certainly don't want to be seen as treating him as though he is still a child, but as parents we need to gain some understanding of how and when our son will be referred back into the renal care system, what his treatment might be and what we as a family can do to help him.

I am sure our situation is one that is being mirrored by many families in the UK. What in your opinion would be our best way forward.

A: Thank you for the question. Kidney disease affects individuals and families. As parents I am sure you are working hard to balance the independence and autonomy of your adult son with your natural concerns about the future. Having children of a similar age myself I hope I am permitted to say “your children remain your children”; they and your son might retort “parents never change”.

The gout your son has now developed is probably unrelated to the underlying kidney problem despite the fact kidney disease is linked to increased levels of urate. Precipitation of urate in the joint space, usually of the big toe, causes the attacks of gout and higher levels of urate increase the risk of an attack. Although urate levels rise as kidney function falls, gout itself is an unusual complication of chronic kidney disease. Rarely urate, which is excreted by the kidney, can crystallise in the urine and form kidney stones and there are some very unusual conditions where urate kidney stone disease is the main cause of kidney failure. They are uncommon and it is unlikely in your son. Much more of a worry when gout occurs in people with kidney disease is the risk that some of the medicines for gout can transiently or permanently reduce kidney function further. This is a particular risk when non-steroidal anti-inflammatory drugs, known as NSAIDS are used for protracted periods of time. Indomethicin, Ibuprofen and Voltarol are examples of NSAIDS. Some NSAIDS are available over the counter from high street pharmacists or supermarkets. People with kidney disease should always be careful about what medicines they take – both prescribed and over the counter. Codeine is a simple painkiller and doesn’t cause kidney damage but can accumulate when kidney function is very low. If the attacks of gout are frequent, a drug call Allopurinol can help prevent them. The dose does need to be reduced in chronic kidney disease and it is a drug that can interact with other medicines, so for instance, it shouldn’t be used with Azathioprine.

What was the cause of the damage to the kidney your son had removed aged 10? I am sure if it was cancer you would have said. Other reasons for removing a kidney are recurrent infection or severe scarring due to childhood reflux. The cause of the damage to that kidney and the reason for removing it might be very relevant to your son’s current situation. If for instance the cause of the damage was reflux and the reason for removal was control of blood pressure then avoidance and treatment of infections in the remaining kidney and management of hypertension would be key goals.

From what you say it sounds like your son’s remaining kidney wasn’t normal when the damaged kidney was removed. That would definitely be the case if it was only working 75% of what one would expect of a normal kidney. Indeed, in children and young people, if one kidney is damaged or removed, the other often grows to compensate and can do the work of one and a half kidneys. That also often happens after someone donates a kidney for transplantation.

On balance it seems likely that your son’s remaining kidney was already damaged by the time he was 10 years old. It is very likely that the current kidney function of 28% means your son’s estimated Glomerular Filtration Rate (eGFR – the measure of both kidneys function) is 28 mils per minute. Normally each kidney would provide 50 mils per minute. So one could think of your son’s single remaining kidney function of being 56% (or 28/50 x 2) of that expected by a single normal kidney. Even so, an estimated GFR of 28 mils per minute is low. It is Stage 4 kidney disease. There is a high risk of raised blood pressure and a definite risk of further progressive kidney damage. The strongest predictors of that risk are blood pressure, rate of change of kidney function over the last few years and the level of protein in the urine. If there is no protein in the urine or it’s very low then the chance of the future need for transplantation or dialysis is much less than if there is a lot of protein in the urine.

At this stage of kidney disease regular checks of kidney function, blood pressure and urine for protein are needed to optimise care. Blood pressure should be perfect, protein in the urine should be minimised by the use of ACE inhibitor drugs and any vascular risk factors – smoking, lack of exercise, obesity should be addressed. With an estimated GFR of 28 mils per minute other complications of kidney disease should also be monitored – anaemia, bone mineral disorders and acidosis. Some but not all people with this level of kidney function do need to try and change their diet but that needs to be determined on an individual case by case basis.

Why don’t you suggest your son has a look at NHS Choices to find out more about gout and kidney disease so that he can play a full part in reducing his future risks and managing his conditions. If you have a look as well it might help the discussions within the family.

Published in Kidney Life magazine in 2010

Q & A: Transplant chances

Q: I am a fifty year old man of Indian origin and have been on dialysis at the local hospital for 5 years. I am doing well but would like to have more control over my lifestyle. I am on the transplant list. My close family members have offered their kidney to me but none has been suitable because of health reasons related to the potential donors. I have been told that my chances of getting a suitable transplant are very low because of my ethnic background. I have heard that there has been a huge increase in the registration for kidney donors over the last few months. However, I am not sure how this will affect my chances. I would be most grateful for your advice.

A: Thank you for this interesting question that raises a number of important issues. I am pleased to learn that you are doing well but also fully appreciate the restrictions that hospital based haemodialysis places on such things as your diet and fluid intake, the ability to tailor the dialysis prescription to your own individual needs and of course flexibility for travel, work and family pursuits.

Home dialysis can give you far more control over the management of your kidney problems and dialysis regime than is possible in a hospital setting. The effects of transferring from hospital to home dialysis on lifestyle options, feelings of wellbeing and objective measures of kidney health can be dramatic. The patient stories speak for themselves. I see that you will have started dialysis in 2004 or 2005, around the time the National Service Framework for Renal Services was published. Standard 2 of the Framework gave individuals approaching end stage renal failure the right 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 maximised. One of the key recommendations was that patients are put onto the national transplant list within 6 months of their anticipated dialysis start date.
There are two biological barriers to successful organ transplantation. Firstly, as is the case for blood transfusion, the donor must be ABO blood group compatible with the recipient. Waiting time reflects the proportion of patients and donors with each blood group. About half of the patients on the national kidney transplant waiting list are blood group O. We know that blood group O patients wait slightly longer for a transplant than group A or AB patients but not as long as group B patients. Approximately 15% of patients on the list but only 10% of donors are blood group B so those patients wait the longest.

Secondly, it is essential to be sure that the recipient does not have antibodies directed against the donor’s HLA antigens (tissue type). If these antibodies were present at the time of transplant they would cause immediate and untreatable rejection. Someone may produce antibodies to HLA antigens if their immune cells have been exposed to another person’s tissue type that is different from their own. That can happen during pregnancy because the baby will inherit some of dad’s tissue type, following blood transfusion and previous transplantation. It will be easier to find a donor for a patient with no antibodies than for someone with antibodies and so if you have antibodies to HLA then you will wait longer for a transplant.

Having ensured that a recipient has no ABO or HLA antibodies directed against the donor the next stage of the national allocation process is to minimise the HLA (tissue type) mismatches between donor and recipient. Although HLA mismatching does not prevent successful transplantation, it is well established that HLA mismatched transplants are more likely to fail in the long term than those that are matched.

A recent study of the patients awaiting a kidney transplant in the UK between 1998 and 2005 demonstrated an imbalance between different ethnic groups in relation to their representation on the kidney transplant list, in the donor population and in the population of kidney transplant recipients. The data showed that 92% of the UK population was white, as was 77% of the kidney transplant list, 97% of the donor population and 88% of the transplants. In contrast, 6% of the UK population was Asian or black whereas they comprised 13% of the transplant list; this reflects the increased incidence of renal disease in these ethnic groups; 2% of the organ donors and 12% of the transplants were Asian or black. As mentioned above, waiting time for a transplant is influenced by ABO blood group. The average waiting time for a transplant for blood group O, A, B and AB recipients was 864, 569, 1360, 528 days respectively. Blood group B patients therefore wait by far the longest for a compatible donor. Only 10% of white patients compared with 24% of black patients and 38% of Asian patients are blood group B. As a consequence of genetic variability between individuals, there are many different tissue types. Some are more common than others and in addition there is variation between ethnic groups as to the most frequently occurring tissue types. This means that patients with rarer tissue types can wait longer for a matched donor and this is more likely to be the case when donors are predominantly from one ethnic group and the patient is from another.

Therefore the two biological factors, blood group and tissue type, underly the longer wait for a transplant experienced by Asian as compared with white patients. In the study described above. Asian patients waited on average 1849 days whereas the average wait for white patients was 1133 days. In 2003 a Task Force was set up to review the 1998 National Kidney Allocation Scheme. One aim was to help patients who had waited a very long time to receive transplants by giving them greater priority. Another aim was to resolve some of the apparent inequalities in access to transplantation resulting from biological differences whilst maintaining good transplant survival. A revised National Kidney Allocation Scheme was introduce in April 2006. The scheme prioritises patients with ideal tissue matches (000 HLA mismatches) and then assigns points to patients based on the level of tissue match between donor and recipient, the length of time spent waiting for a transplant, age of the recipient (with a progressive reduction in points given after the age of 30) and location points such that patients geographically close to the retrieval centre receive more points. The patients with the highest number of points for a particular pair of kidneys are offered these kidneys, no matter where in the UK they receive their treatment. There is careful monitoring to ensure that the scheme fulfils the objectives of improving equity of access to renal transplantation.

As a blood group O donor is also compatible with a blood group B patient, the 2006 scheme allows, under certain circumstances, a group O donor kidney to go to a group B patient so that they do not wait so long. Also, rare tissue types can now be considered matched with similar, more common tissue types so that patients with rare tissue types should not wait as long. Since the scheme was introduced the proportion of patients on the list waiting over 5 years has dropped from 17 to 8%. The average waiting time for Asian patients in the most recent analysis had fallen to 1511 days. It is important to remember that transplantation cannot occur without organ donation and a crucial aspect of improving access to transplantation is to increase the number of organ donors. Following the publication of the Organs for Transplant Report in 2008 we are working hard to increase the number of people signed up to the Organ Donor Register. A publicity campaign was launched in November 2009 that has already increased the number registered and the next phase of the campaign will be targeted at ethnic minority communities with the aim of increasing donation from those groups. Renal Patient View enables individual patients to track their status on the transplant list. NHS Blood and Transplant updates the status every day so it’s a good way for patients to keep in touch about all aspects of their kidney disease and its treatment. Renal Patient View signposts a number of high quality sites that explain issues of transplantation in more detail. I would also strongly encourage you and similar patients to discuss their individual options and concerns with regard to home dialysis, potential living donors from non family members or previously excluded family members because of blood group or tissue typing compatibility and some of the newer strategies to increase the chance of transplantation with your local kidney and transplant teams.

In summary, without knowing the details of your case, your above average wait for a transplant is probably a consequence of the biological characteristics that are used in organ allocation. The national scheme for kidney allocation is under constant review and was revised in 2006 in order to remove some of the apparent inequalities. In addition, considerable efforts are being made to increase the number of organ donors for the benefit of all those awaiting a transplant. I hope that in 2010 you have been able to tailor your dialysis to your individual needs and priorities and reconsider live donation, perhaps from ABO or HLA “incompatible” individuals or be fortunate enough to receive a call “out of the blue” asking you to come into the transplant centre for a non heart beating donor kidney transplant. Early in 2010 the campaign to increase donation was focused on Asian and black communities and if successful, this initiative should help to improve your chance of an offer.

Published in Kidney Life magazine in 2010

Q & A: Minimising long term complications, mental and physical

Q: As the number of dialysis patients increases year on year with some patients now dialysing for many years, what plans are afoot to tackle the resulting complications both physical and mental.

A: Thank you for raising the issue of the health and mental wellbeing of people on dialysis. You are quite right about the numbers of people on dialysis continuing to rise year on year. Most people on dialysis are not currently transplant listed and they will therefore be on long term dialysis for the rest of their lives. Such patients often have a number of additional medical problems over and above the fact that their kidneys have failed. Indeed, co-existing heart disease or blood vessel disease is often the reason individuals are deemed unsuitable for transplantation.

The quality of life for people on dialysis is influenced by a range of factors including physical health, mental wellbeing, dietary and fluid restrictions, psycho-social issues, transport and the ability to dialyse away from their base unit or home. The Renal National Service Framework describes a vision for the empowerment, support, care and treatment of children, young people and adults with kidney disease to optimise patient experience and outcomes. It has a set of standards, quality indicators and good practice markers that must be achieved to make world class kidney care a reality.

For people on dialysis, the experience often is the outcome and if we are to optimise patient experience and outcomes, attention to all the needs of those with advanced kidney disease should start long before dialysis is required. The year before renal replacement therapy is likely to be needed is a crucial time to address medical, both physical and mental, psychological and social issues so that the transplant, dialysis and conservative care options can be fully explored and informed choices can be made. This should take into account individual decision making styles and peoples preferences , needs, desires and lifestyles as well as their physical, mental, psychological and social situation. Shared decision making is the way in which the multi-disciplinary kidney care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments and the patient communicates his or her values and relative importance he or she places on the potential benefits and harms. Shared decision making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. Every kidney patient is entitled to receive care planning and have their own individual care plan addressing all these needs.

But not everybody who needs dialysis receives this multiprofessional preparation and choice to acheive the best outcome for their own wishes and circumstances. We have however seen substantial improvements over the last 5 years. The number of people with end stage kidney disease arriving at kidney units requiring immediate emergency dialysis has fallen by about a third since the introduction of strategies to identify kidney disease earlier by the NSF. Those that do arrive without adequate preparation should receive intensive input from the renal team so they too have an opportunity to choose the type of dialysis, consider transplantation or , where appropriate, choose conservative kidney care. Timing of such discussions when patients have been very unwell can be tricky and I think that we can do better both in identifying more people early so fewer “crash land” and also in ensuring that sufficient attention is paid to consideration of benefits and risks of different choices made by patients when they start dialysis in this unplanned way.

People who are on dialysis come in all shapes and sizes – some are young, some are old, some what the freedom of managing their own condition at home, others require the support of the kidney team to optimise care so the care plan has to be personalised – we will fail if it’s a tick-box exercise. We do, however, know what complications to expect and both patients and staff need to be looking out for the early warning signs so the complications of dialysis can be minimised. For those on haemodialysis, having an arterial venous fistula is the key to good outcomes and reduced complications including infections and vascular events which are major medical problems for people receiving dialysis. There have been significant improvements in vascular access over the past 5 years as evidenced as by a reduction in more than half of the number of MRSA blood stream infections now seen. There Is still big variability between units and the targets set by the Renal Association have not been achieved in most units yet; the fact that in some units 95% of people receive dialysis use a fistula is very encouraging, it means that units where only 65% of people have a fistula, or worse still only 50%, can do considerably better. One of the national Kidney Care Audits that I am sponsoring focuses on vascular access with the aim of being able to regularly measure this quality marker and achieve year on year improvement in every kidney unit.

One of the many challenges in kidney care is that most things are not as clear cut as the need for good vascular access for long term wellbeing for people on haemodialysis. The evidence base for clinical practice in dialysis is much less than in many other conditions such as heart disease or cancer because historically there hasn’t been as much research in kidney care as other areas. However, Kidney Research UK, the Renal Association and the British Renal Society are starting to plug that evidence gap. We can also draw parallels from other areas, particularly heart disease and until proven otherwise, it makes sense that people on dialysis, because they have such high rates of heart disease, should receive the same sort of treatments as people without kidney disease who have had heart attacks where we have much more research and know more clearly what should be done.

There can be no health without mental health. This has been a neglected area in kidney care. We know that up to 30% of people on dialysis will experience a period depression. Being on dialysis is often a psychological as well as a physical strain for families as well as patients. R ecent guidelines on the identification and treatment of depression in people who already have an established physical illness has recently been produced by the National Institute for Health and Clinical Excellence (NICE), these guidelines are very relevant to kidney services. There are now good tools to screen for depression in the pre-dialysis and dialysis population and there are pharmacological, behavioural and cognitive treatments that can help alleviate depression in people receiving dialysis. This should not be neglected.

The social and psychological support workforce play a fundamental role in renal care helping patients and carers address the practical, economic, social and psychological problems associated with chronic disease, disability and eventually death and bereavement. It is a concern that social workers and psychologists are in such short supply on dialysis units. The Renal Special Interest Group of the British Association of Social Work carried out a study of renal social work provision in 2007 and disappointingly found that the number of renal social workers had fallen by 11% since 2002. The Kidney Alliance has also highlighted that social work appears to be one of the most severely under-resourced areas of renal services, with staffing at levels falling far short of those required to provide an adequate service. Yet some places are successfully addressing this problem. In 2008 Wirral University Teaching Hospital analysed the requirements for their patients. Their review found that anxiety and depression were common and with the support of the Hospital Trust the team have now employed a full time psychologist and are training members of the nursing staff in counselling. It’s a false economy not to treat depression, not to provide psychologist support for people with advanced kidney disease and not to address the social care needs of those on dialysis. Mental illness, psychological distress and unresolved social care issues result in an increased need for hospital admissions and much longer lengths of stay than in people who have these needs well supported, Unnecessary admissions and long length of stay waste money that could be used in improving the quality of care for people with kidney disease.

So, in summary, progress has been made in some areas but there’s much to be done – particularly in terms of mental wellbeing, psychological and social care. That is the reason that care planning remains high on the agenda of NHS Kidney Care and why we are support a move to a chronic disease management model of care where the patient is at the centre, where education, empowerment and encouragement for the patient on dialysis are given as much importance as some of the physical measurements we make to assess quality , and where care is delivered in a true partnership with the patient. There is good data to show that the more a person is involved in their own treatment decisions and management plans, the better the outcomes.

Published in Kidney Life magazine 2010