After the liberation: White Paper and consultations published

“Equality and excellence: liberating the NHS”, a White Paper setting out the coalition government’s vision for the NHS was published on 12 July. This is a significant document for kidney services setting a long term plan for the NHS. It aims to give the NHS a stable, enduring framework for quality and service improvement. It sets out the “what” and the timescales that are, in part, dictated by the next Parliamentary session legislative programme. The scale is large and the pace is quick, do read the document; it builds on Lord Darzi’s aphorism “quality is the organising principle of the NHS”. The focus is on measurable quality and the need for innovation. The pendulum is swinging from the centre to local determination, from hospital focussed processed targets to primary, community and social care delivery. The £20 billion cost saving challenge remains and at the heart of the White Paper are proposals for

• an information revolution, for patients and clinicians and to hold the NHS to account
• a shift toward better outcomes
• an increasing role for clinicians

this goes with the grain of what the kidney community, NHS Kidney Care and professional and patient associations have been working hard to achieve – better experience and better outcomes for those with kidney disease. We should all welcome the fact that the NHS hasn’t suffered from indecision and uncertainty despite the events of the past few years – the global financial crisis, the election and the coming together of the first coalition government in living memory for most of us.

So the “what” is clear but the “what” is usually the easiest part and that’s the case here as well. The “how” is more difficult. It’s going to occupy us in the months and years to come. The timetable at the back of the White Paper lays out the programme of work. First up are a series of consultations on outcomes and commissioning. It’s your chance to comment and for individuals and organisations to help shape the “how” for the new direction of the NHS.

In the Outcomes Framework, the principles on how the proposed NHS Commissioning Board should be held accountable to Government and taxpayer, what overarching indicators are likely to be chosen, what methods could be used to prioritise improvement areas and some examples of potential outcome indicators are presented. The 5 domains of the NHS Outcomes Framework are:

• prevent people from dying prematurely
• enhancing the quality of life for people with long term conditions
• helping people recover from episodes of ill health of following injury
• ensuring people have a positive experience of care
• treating and caring in a safe environment and protecting them from avoidable harm.

Quality standards will set what high quality care looks like across all major pathways of care. NICE are currently working to produce quality standards for kidney disease and the indicators for quality improvement, based on NICE guidelines, the Quality and Outcomes Framework of primary care, Renal Registry returns and the National Renal Dataset will map to the quality standards.

left: fig 5 “Transparency of outcomes – a framework for the NHS”

OK? Following things so far? So how will the money flow? “Increasing democratic legitimacy in health” introduces health watch. Health watch is being commissioned to enable patients and the public to shape health services. Councils will be responsible for ensuring local voices are heard and patients are able to exercise genuine choice. One of the central features of the proposals in the White Paper is to devolve commissioning responsibilities and budgets as far as possible to those who are best placed to act as advocates and support them in healthcare choices. Most commissioning decisions will now be made by consortia of GP practices, supported and held to account for the outcomes they achieve by the NHS Commissioning Board. It will not be appropriate for all commissioning decisions to be made at a local GP consortia level and some specialist services such as dialysis and transplantation will need to be commissioned for a larger population, by the NHS Commissioning Board. “Commissioning for Patients” published alongside “Increasing Democratic Legitimacy in Health” gives further detail of how GP commissioning consortia and the NHS Commissioning Board will work. Read it and comment; it will affect the kidney services you provide or use.

One proposal is to establish a Health and Wellbeing Board within the Local Authority. This would provide a vehicle and focal point through which joint working could happen. Alternatively local partners may prefer to design their own arrangements. The Government would like your views on how best archive partnership working and integrated commissioning. If Health and Wellbeing Boards were created their primary aim would be to promote integration and partnership working between the NHS, social care, public health and other local services and improve democratic accountability. Whilst responsibility and accountability for NHS commissioning would rest with the NHS Commissioning Board and GP consortia, the Health and Wellbeing Board would give Local Authorities influence over NHS commissioning and corresponding influence for NHS commissioners in relation to health improvement, reducing health inequalities and social care.

These changes will be complemented by the creation of a National Public Health Service with a ring-fenced improvement budget to deliver national and local priorities. The local Directors of Public Health will be directly accountable to both the Local Authority and, through the public health service, to the Secretary of State.

Read these documents and comment, the “what” is determined but the “how” is yours to shape.

Front door to needle time

I heard on the radio this morning that French air traffic control are on strike. Plus ça change. So despite the typical Manchester weather, are they trying to play cricket at Old Trafford? I know it must be holiday season. Have you ever missed a train or even a plane? If not I bet you have come close. Travelling is stressful!! About 10 years ago, Guy Hill of the North West Region Kidney Patient Association, described a journey – taxi not arriving, several phone calls – who is responsible then? Unexpected road works, increasing anxiety, why are all the lights red, oh and now we have to pick up someone else, and they are not even on the way to the airport. Powerfully Guy then revealed the truth – he had made up a small part of the story, everything else was true – the destination wasn’t the airport it was the dialysis unit!. The journey wasnt once a year it’s to and fro 6 times per week.

Transport, transport, transport continues to be the top 3 patients experience concerns for many receiving hospital and satellite based dialysis. Dr Richard Fluck (Consultant Renal Physician, Derby) has started applying the term “door to needle time” for haemodialysis plaugiarising the heart attack thrombolytic response time performance target. The phrase makes the point that it’s not getting to the unit that always the issue. In Derby the waiting room for dialysis is always empty – start times and transport procedures are staggered so there is no delay getting on the machine.

You may remember the National Kidney Care Audit’s patient transport survey, which took place in 2008. The NHS Information Centre have announced that they next survey will take place on 13 and 14 October 2010, and I hope that once again as many people receiving haemodialysis as possible will be able to take part.

Two thirds of all haemodialysis patients took part last time, and having the highest possible response rate really does give us a more accurate picture and makes the survey more useful. All responses will be treated anonymously, and will not affect patients’ treatment in any way.

All renal units will also be sent an organisational questionnaire about the patient transport services they provide.

This survey really does encourage improvements to services, and this survey will measure what changes patients have experienced since it was last carried out in 2008. I went down to Birmingham on the morning of the survey. I thought I had an early start from Manchester but the poor lady I met at 8am in the dialysis unit had been up before me, waiting for the ambulance 45 minutse before it arrived; she hadn’t been given a precise pick-up time. She lived about 20 minutes away from the unit!

To see your local results from the 2008 survey look at NHS Kidney Care. I’m delighted to see that action-planning has taken place across the country as a result of the earlier survey, and this focus on patient transport should continue. It’s such an important issue for patients, and improvements can make such a difference to their quality of life.

To read other organisation’s action plans, and for resources to help you improve services, visit The NHS Information Centre’s action-planning resource.

Clinical Lead Alistair Chesser from Barts and The London has written to all renal units and The NHS Information Centre will give units all the information and support they need to participate. I hope that all renal unit staff will be on board to help patients fill the questionnaires in. If you are a haemodialysis patient, I encourage you to look out for the survey in October, and to take part in this important national audit.

The NHS Information Centre have a useful e-bulletin for the National Kidney Care Audit. To subscribe, please e-mail kidneycare@ic.nhs.uk.

You can read more on the NHS Information Centre website.

Related blogs:
Travel chaos – improvements expected soon; Jan 2010
Patient transport survey results launched ; June 2009

Q & A: Home dialysis start-up costs

Q: Dear Donal, the perennial question relating to the provision of home haemodialysis is; “what further resources do we have at our disposal to facilitate the choice of the patient?”

About a quarter of the patients that we have in training for home haemodialysis at present do not have a suitable room for conversion and we therefore have to look at how we can provided accommodation through the provision of a porta cabin in their garden at a cost of around £12,000 per installation.

I understand that the mandatory tariff for home HD may be set in such a way as to incentivise home therapies which is to be welcomed. However as you know one of the sticking points to setting up a home programme is accessing funding to cover start up costs.

Whilst we have a modest budget to convert homes, and these conversions are not extravagant, the cost of providing one cabin is the equivalent of providing home conversions for 4 patients. I am in the process of speaking to PCTs to see if they would be able to contribute to the cost of providing cabins. In the recent past I have been successful in securing funding but the criteria for supporting such applications seems to be inconsistent across PCTs. One may argue that the cost of covering all types of installation should be affordable from the current tariff.

I am obviously aware that new technology is on the market that requires minimum work to the patient’s home for it to be installed and I await the report of the experience that SRFT and the Lister in the use of this equipment and its operational costs.

I am advised by Dr Sandip Mitra that funding to cover start up cost is available; where this is being held I do not know hence my email. Can you advise if Sandip’s assumptions are correct?

In my efforts to secure funds from the PCTs I argue that it will effectively cost them more to keep a patient on maintenance haemodialysis Vs home HD. My worry at the moment is that a tariff to incentives home therapies could be counter productive if that tariff is higher than hospital/satellite tariff. It would make any future bids to PCTs futile I think.

Given the financial climate that we find ourselves in at present will patient choice be sacrificed in an effort to deliver a more financially viable service?

I look forward to hearing your thoughts on the matter. With kind regards, Ken Collins, Directorate Manager, Central Manchester University Hospitals NHS Foundation Trust

A: Dear Ken, thank you for your recent email. As you know better than most, this is an important part of the process for establishing people on home haemodialysis and frequently discussed at our home therapies road shows.

At present, the non-mandatory tariff suggests a sessional price for haemodialysis, irrespective of the setting and the intention is for this price to be fully inclusive, including set-up costs. The non-mandatory tariff was introduced in consultation with the Payment by Results (PbR) team, who were clear that tariffs are fully inclusive and mindful of the desire to incentivise home therapies. As a result, there are no separate funding sources for set-up costs within the dialysis tariff.

Owing to the visibility of set-up costs, providers are concerned that suitable patients may not receive home conversions. However, no patient should fail to receive home therapy on this basis. The challenge for provider units is to demonstrate the importance of home therapies for individual patients and the costs benefits across the whole pathway of dialysis provision. Highlighting the patient benefits, such as improved quality of life, reduction in medications and hospital transport, alongside the unit benefits of reduction in hospital admissions and the need for investment in expanding capacity provision, should be persuasive.

To minimise the effort for requests on a case-by-case basis, we would advocate commissioners, providers, patients and PCT representatives agreeing collectively on the types and timings of home conversions for all patients. This may involve less costly home conversions, or newer technologies, or assistance from disability allowances or housing associations.

Such approaches are all the more relevant in the current financial climate, as we strive for all renal patients to have genuine choice of their preferred form of renal replacement therapy as clinically appropriate. I would be very interested to hear your thoughts and potential solutions regarding this important issue. Please do not hesitate to contact me if you wish to discuss this matter further. Kind regards, Donal

Education, education, education

Opportunities for patient education exist at all key stages of kidney care, from time of diagnosis with early CKD to end stage renal failure; and education remains as important now as when Tony Blair made it his Government’s key priority in his Conference Speech in 1997.

Successful contemporary educational interventions for people with a chronic disease typically incorporate information, components to improve knowledge along with a variety of psychological methods to empower patients and change behaviour. Knowledge is a pre-condition for change. If people lack knowledge about how their lifestyle habits affect their health they have little reason to change behaviour. Behavioural change requires people to develop the means to exercise control over their motivation and health habits. Such interventions have produced clinically important benefits in the areas of diabetes and hypertension.

It was with this in mind that I went to the Renal Education Network meeting in Coventry on 23 June. It clashed with the Slovenia v England game which we missed – but the less said about the World Cup the better. The meeting brought together about 100 people interested in patient education and behavioural change. There were a mixture of plenary talks to set the scene, poster presentations mainly covering ongoing local work – they were excellent – and interactive workshops to share knowledge and expertise to answer

1. how do we deliver education to patients
2. how do we empower patients
3. how do we educate the educators
4. how do we evaluate the effects of what we have done

Dr Jo Burn (Nurse Research Fellow) spoke about her work in Leicester where the team have looked at all the kidney literature in detail and found 22 studies involving a wide range of multi-component interventions with variable aims and outcomes depending on the area of kidney disease care. A single major long term study was a 20 year follow up of pre-dialysis education intervention that showed increased survival rates but the quality of many of the other studies was sub-optimal. No study was found that addressed chronic kidney disease at an earlier stage.

Jo concluded that some educational interventions were successful at improving clinical, behavioural and psychological knowledge outcomes in pre-dialysis and dialysis patients and warrant further investigation. However, the main plea was for the development of a general framework to improve design, delivery and evaluation of educational interventions. Such frameworks already exist for complex interventions and diabetes education; and that’s where Kate McCarthy and Rob Higgins (both at Coventry & Warwickshire NHS Trust) and the Renal Education Network might step in. Rob and Kate aim to produce a discussion paper for publication based on the ideas and conclusions drawn from the workshops.

Poster Presentations

Poster 1 - Neerja Jain, Kidney Research UK: Development of an educational intervention for people with early chronic kidney disease who are managed in primary care.

Poster 2 - Rakesh Patel , University Hospitals of Leicester NHS Trust: Early fistula placement and information from different professionals doesn’t make a difference to quality of life reported by patients... could better education?

Poster 3 - Dr Alice Smith, University of Leicester: Physical activity in advanced chronic kidney disease: why we should educate our patients to exercise.

Poster 4 - Deborah Douglas, Gwyn Somers, Sheffield Teaching Hospitals NHS Foundation Trust: Developing a pathway for the education of unplanned start dialysis patients.

Poster 5 - Chris Williams, Sue Heatley, City of Manchester Foundation Trust: A novel approach to educating pre-dialysis patients and carers ‘Harry meets Sally’

Poster 6 - Kate McCarthy, University Hospitals Coventry & Warwickshire NHS Trust: Pre-dialysis education: A patient s’ needs assessment.

Poster 7 - Chris Williams, Sue Heatley, City of Manchester Foundation Trust: Developing a model for self-care in pre-dialysis.

Poster 8 - Michelle Clemenger, Imperial College Healthcare NHS Trust: The renal adaptation program: An educational support programme for patients who present as “crashlanders”.

Screensavers save lives!

I am always looking out for ideas where impact can be made and awareness raised and at Salford Royal, where I wear my “consultant hat”, the team organises awareness events for National Transplant Week (NTW) every year encouraged by David Dalton (CEO, Salford Royal NHS Foundation Trust).
They have organised a balloon release, held donor drives with the donor bus visiting local towns, devised newsletters and screensavers and this year will be holding their third annual meal at the Midland Hotel (Manchester) where dialysis patients and transplantees enjoy an entirely dialysis-friendly 3 course meal. With a great team working together, they have received support from the Trust, Hope Kidney Patient Association, celebrities and pharmaceutical companies who have provided funding, photographers and raffle prizes.

It’s not rocket science. But it does take planning, determination and a great kidney team, working together with the Trust, PCTs, the KPA and other organisations, to pull it off. This year, concentration has focussed on staff and visitors to Salford Royal. There is a well stocked stand with information, donor cards, balloons, pens and car stickers in the shopping plaza at Salford Royal Hospital, a newsletter to employees and a screensaver which activates on idle computers.

The message is clear for all to see wherever you look - Well done “Team Salford”!

top balloon release Salford 2004, centre donor drive Wigan 2008 and screensaver 2010

The heart and the kidneys – til death do us part

Increasingly patients with severe heart failure are managed in the community by specialist heart failure nurses working with primary care and cardiology teams. Their input is crucial, they’re often in the best position to detect early signs that the condition is worsening and to act to prevent acute exacerbations. Given that renal and heart failure share many features, indeed death from heart failure or renal failure rarely occurs in isolation, there is a real opportunity to develop, commission and deliver conservative kidney care and heart failure services together.

End of Life Care in Heart Failure sets out to raise awareness of the supportive and palliative care needs of people living or dying with progressive heart failure, to facilitate commissioning of services tailored to meet those needs. It comes hard on the heels of End of Life Care in Advanced Kidney Disease (a framework for implementation) published by NHS Kidney Care. Both build on the National End of Life Care Strategy that aims to ensure provision of expert end of life care moves beyond hospices and specialist palliative care services to include all those with life limiting conditions in all care settings.

The heart failure framework complements the kidney care approach, there is a particular focus on advanced care planning and the importance of multi-disciplinary working including social care is emphasised. The recent release of information about the place of death of people dying from kidney disease, with the majority dying in hospital, compared to cancer related deaths where the majority get to die in their own homes or hospices, may also signify inadequate Local Authority and social care provision in conservative kidney care.

Both End of Life Care in Advanced Kidney Disease and End of Life Care in Heart Failure are clearly written, crisp and jargon free. They stand as pillars that together make the case for joined up community delivered care in these 2, so similar, vascular conditions.

Predicting kidney disease – the QKidney scores

“Planning will always get it wrong” my good friend Colin Short, Consultant Renal Physician (Central Manchester NHS Foundation Trust), frequently observed when we worked together on the Greater Manchester Renal Project in the late 1990s; “it’s just a matter of by how much”. It’s true and using USA or global data on, for instance, diabetes to predict the future burden of kidney disease is more likely to get it wrong by a bigger margin than by using information from the UK that may also provide knowledge about local variation. The recent National Diabetes Audt Report is quite alarming from a kidney disease perspective. We know kidney disease in England is set to increase but by how much and what can we do about it?

Julia Hippesley-Cox and the QResearch Team in Nottingham have just published 2 new risk algorithms for estimating individual 5-year risk of developing moderate-severe kidney disease (Stage 3B, eGFR < href="http://www.qkidney.org/">QKidney. QKidney can be used within the GP or practice nurse consultation with an individual patient and risk displayed to the patient so that potential interventions can be discussed or used at the population level for the practice or even whole health economy.

This is the first generally applicable software tool that can be used for individual risk assessment. It isn’t perfect. The study population is large and the fact that ethnicity and social deprivation along with traditional risk parameters and co-morbidity are included is a major plus. The ethnicity data are particularly interesting, unexpected they show lower rates of CKD in both black males and females.

The study period 2001-2008 was a time of transformational change. By 2001 much of the electronic patient record was in place and lab links, that automatically transfer eGFR results into primary care computer systems, were beginning to be the norm. Only 20% of the Qkidney population had a serum creatinine prior to the baseline whereas 55% had a creatinine during the follow up period. CKD only became recognised by the wider clinical community after the publication of Part 2 of the Renal NSF in 2005, the move to automatic eGFR reporting and inclusion of a CKD domain in the Quality and Outcomes Framework for primary care in April 2006. After this, detection of CKD shot up and management, still far from ideal, has improved year on year. These changing circumstances almost certainly had some effect on the modelling.

That said, the prospect of being able to routinely identify and discuss with individual patients their own kidney risk in every general practice in the land is a major milestone. Activating patients, to use the chronic disease management jargon, will almost certainly be even more effective when their own laboratory data of risk, serum creatinine for eGFR and urinary albumin creatinine ratio are also available for the patient and the clinician. This a vital part of realising the “preventative dividend”. It sets the scene for the hard work of turning individuals’ knowledge and understanding of their kidney disease risks into the actions and behavioural changes to minimise those risks. Beginning the conversation about risk is the first part of the patient journey to the confidence to solve problems and taking control. The earlier that is started the better. QKidney also offers the prospect of integration with QRisk, the vascular risk predictor and the QD score for diabetes risk. That substantially increases the chances it would be taken up by busy GPs.

Is it a flight of fancy to think QKidney could be linked to individually held medical records in Google health or some other type of my-healthspace, perhaps through NHS Choices so that the public can look up their own risk profiles on the net at a time that suits them? And, if the risk is significant and the individual wants, they may be able to register for online coaching and support? Could we use the expertise that has been gained with Renal Patient View to make such a future a reality?

Q & A : Hep B vaccination for predialysis patients - who pays?

Q: Hi Donal, I am having increasing numbers of GPs who say that Hep B vaccination should be provided by renal services as part of the bundle of predialysis care. They say the PCT does not fund them for giving the vaccination, which is normally paid for privately by patients wishing to be vaccinated because of foreign travel or for employment reasons. Many patients are being left in limbo and will start dialysis without the opportunity for vaccination if we can’t sort this out. It is of course in the UK CKD guidelines, so wonder what the DH view is on it? Thanks Dr Rosie Donne, Consultant Nephrologist, Salford

A: Thank you for your email requesting the Department of Health’s (DH’s) view on who pays for Hepatitis B vaccinations in CKD .

The current DH guidance on Good practice guidelines for renal dialysis/transplantation units: prevention and control of blood-borne virus infection September 2002, (Chapter 6) makes clear that “immunisation against HBV is recommended for patients already on haemodialysis or renal transplantation programmes and for other patients with chronic renal failure as soon as it is anticipated they may require these interventions”. The need for HBV and indeed pneumococcal vaccination in CKD is now also flagged on NHS Choices.

Immunisation of patients should not be only for patients travelling abroad, as immunising all patients in a renal unit will help ensure that if an HBV outbreak occurs the minimum number of infections will result and only a few will likely progress to the chronic carrier state. The DH advice to immunise when it is clear that renal replacement therapy might be needed reflects the fact that successful immunisation is more likely the earlier in the course of CKD it is administered.

I understand that, there is no specific funding allocated through the GP contract for the provision of Hepatitis B vaccinations. It is for Primary Care Trusts (PCTs) to decide how to commission this service and to make appropriate local arrangements with GPs or other contractors who carry out the vaccinations (funding such arrangements from their general allocations). As there is, no payment specified in the GMS Statement of Financial Entitlements for providing Hepatitis B vaccination, PCTs may put in place a Local Enhanced Service (LES) agreement in relation to Hepatitis B vaccinations for predialysis patients (and/or in other circumstances, which HepB vaccination is recommended). Where GPs provide the vaccination to NHS patients it must be provided free of charge to the patient. A GP may claim from the PCT the appropriate remuneration for the procurement of the vaccine, as specified in paragraphs 17.3 and 17.4 of the Statement of Financial Entitlements and any other payment due under a LES.

We would expect that PCT and Specialised Commissioners working together with their Kidney Care Network partners should make clear who locally is responsible for provision of Hepatitis B vaccinations, how it is resourced, and to ensure this aspect of quality of care is delivered in a timely and patient centred fashion.

I hope this is helpful, Donal.