Chronic kidney disease: A yes vote for more patient choice

Chronic kidney disease is a major challenge for the NHS and a burden for the patients who suffer from it, especially those who need dialysis or are waiting for a transplant.

Care has improved since the publication of the National Service Framework nearly 10 years ago but outcomes are still poor for some patients.

The report Kidney Health: Delivering Excellence, published by patients’ groups and professional organisations, has highlighted the need for a new strategy and the issues of inequality in accessing high quality services and treatment.

‘Care has improved but outcomes are still poor for some kidney disease patients’

But there are also issues of patient compliance and choice.

Dialysis can be a punishing regime and patients are likely to take multiple medicines at different times of the day. They may also find it difficult to comply with diet regimes, yet there is evidence that patients who are helped to self manage their condition can improve their own health.

What can help propel care forward and deliver better patient care and longer, healthier lives for people with kidney disease?

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An HSJ roundtable - in association with Mitsubishi Pharma Europe - drew together experts from different disciplines to discuss how this could happen for patients with advanced kidney disease and pinpoint some of the barriers to improvement.

Opening the debate, chair and HSJ deputy editor Emma Maier said that renal services had come a long way since the framework but there was a need to have a conversation about where to go next.

“It is predicted that there are an extra 20,000 strokes and [myocardial infarctions] a year, and an extra 43,000 deaths as a result of kidney disease,” she said.

Ms Maier suggested three key areas.

How could healthcare professionals work more effectively with patients - whether it was communicating, helping them to modify their behaviour and preventing them getting worse, or whether it was about how they worked together in a multidisciplinary team and came together around the patient in the most effective way.

‘We have lost the human touch and talk of dialysis sessions as if they were something to be got through’

Secondly what changes could be made to the way healthcare professionals work and are there still opportunities to make improvements by plucking the low hanging fruit or have they all been picked?

Finally she asked what were the barriers to change and what might be done to overcome them.

Taxing treatment

Fiona Loud, policy director of the British Kidney Patient Association and a transplant recipient herself, set the scene by explaining what life was like for those with advanced kidney disease.

Many would need regular dialysis and transport to and from hospital was a key issue for them. They might have to be up at 5am, face an hour or two in a vehicle as other patients were picked up, have dialysis - during which they could not eat - and then face another wait to be taken home. “They are not going to wait to speak to their local friendly dietitian,” she said. “A lot of our services are based around the service, not the patient.”

Patients might also be called into hospital for other appointments on days when they were not being dialysed rather than utlising the times when they were. There was a need to “treat the patient as someone whose time is as precious as that of the healthcare professional who is working with them,” Ms Loud said.

She urged healthcare professionals to give patients the opportunity to manage their condition themselves if that was what they wanted. For example, when she was undergoing treatment she routinely weighed herself in the unit and was astonished to find patients in other units did not do the same thing.

“I think some people have the potential to do more for themselves,” Ms Loud said.

“It is about understanding the burden that someone is under.”

‘A lot of our services are based around the service, not the patient’

Often patients could not sleep because they felt itchy and might not enjoy their food which highlighted the value of dietitians. Some patients also required input from counsellors and social workers.

Patients enquired about foodbanks and Ms Loud was aware of one local support group that had seen an increase in people seeking grants for such things as replacing lost spectacles and paying for funerals.

There was universal support for the idea that patients needed to be the focus of what everyone was doing.

Dietitian Rebecca Walker, from the Royal Free London Foundation Trust, said not only should healthcare professionals spend time talking to patients, they should also be listening to what patients felt the issues were for them.

For patients having housing problems or trouble affording food it was often difficult to talk to them about diet, she said.

Her colleague, specialist pharmacist Caroline Ashley, added: “Sometimes we have patients… being reviewed… [whose] phosphate levels look bad [and] when we talk to the patient they can’t afford their tablets.

When they go for their repeat prescriptions it’s a lottery as to which ones they can afford.”

Problem solving

Sometimes involving other staff can be helpful in solving practical problems and helping patients cope with the impact of their disease. Royal Free employs renal psychologists while renal unit matron Leo Bailey said that there were two full time social workers attached to her unit at the Royal Berkshire Foundation Trust. This had contributed to a sea change in the culture.

But the ways to help patients become more independent and better manage their condition, including respecting their choices about what was important to them, provoked much debate.

Consultant renal physician and former national director for renal services Donal O’Donoghue said: “Probably most dialysis fosters dependency rather than supporting independence.”

He pointed out that it was important to take into account people’s aspirations. There was evidence that dialysis did not lead to a longer life in some patients - for example elderly women with two or more comorbidities - but patients were often not aware of this. “It is possible to have these conversations if there is time and space to do so,” Dr O’Donoghue said.

Risk calculations could provide information about who was not likely to benefit from dialysis, but not all patients were given this information. “It is often implicit in the way that services work that there is a survival advantage in going with dialysis,” he said.

Current national clinical director for renal services Richard Fluck said: “We don’t have a coaching culture which empowers those who are working with individuals to further their aspirations. We have the wrong mindset.”

He urged a move away from a “factory approach” and warned: “We have lost the human touch and talk of dialysis sessions as if they were something to be got through.”

‘It is the patient’s own choice and you can’t make that choice if you don’t have that information you can make sense of’

There is a need to understand what patients want while also challenging them to be independant, he said.

To do this patients needed to be provided with the right information, with a move to shared decision making and a focus on patient reported outcomes.

“The other thing is respect for the individual and their life goals,” Dr Fluck said. “It is understanding there is a balance for the individual between what we see as a professional and what they see as their life goals.”

Coaching is more than just supplying information; it is about using professional training and experience to understand the patient’s point of view and talking through the options. Patients should not be given “a wealth of information and no analysis”.

But Dr O’Donoghue said that if trade-offs are to be made they should be the patient’s decision and it is important for them to set their own goals. Dr Fluck said: “I agree with goal setting but that does not stop us challenging in a general way.” He highlighted how risks could be discussed with patients.

But this kind of approach would be a considerable change for many professionals who were used to a more paternalistic approach, Ms Walker argued.

Ms Loud added: “It does take time to have that sort of conversation and come back to it. It is the patient’s own choice and you can’t make that choice if you don’t have that information you can make sense of.”

But she pointed out that kidney patients often have a long term relationship with their clinicians, unlike patients undergoing much elective treatment.

Ban the blame culture

And she said that the word “compliance” was an issue in itself because it was part of a blame culture. “Compliance suggests that we have to do something, to comply with some edict. We don’t. We have to choose to,” Ms Loud said.

Many speakers highlighted the difficulty of initiating discussions and joint decision making when under the pressures of busy clinics.

Consultant nephrology nurse Chris Jones, who works at King’s College Hospital, was frank. He said: “We are very conscious that the service that we provide is not the best and we have been struggling to provide a better one.”

He highlighted research that suggested some patients who started dialysis did not continue with it because of the issues around services rather than the impact of the dialysis itself.

Ms Bailey said that as a manager and nurse she felt renal services had lost their way somewhat in terms of listening to individuals about what was right for them. “The capacity issues we have all faced over the last 10 or 15 years… have led to a treadmill which does not make nurses feel empowered and confident in coaching patients,” she said.

“It is about making the time and recognising that when we make that time we create headroom elsewhere,” said Dr Fluck.

Dr O’Donoghue agreed that it was necessary but added it was important not to put patient experience low on the list below other measures because this switch would never be made.

‘At the back of my mind I’m very conscious of phosphate levels and how this affects the renal registry’

Several speakers pointed out that there were issues around how they were measured. There was a tendency for targets and performance to be around aspects of care that were easy to measure.

Independent renal nursing consultant Nicola Thomas said there was a conflict between patient reported outcomes and other measures trusts had to achieve.

“Our focus is wrong but how do we get that focus to be on the patient reported measure,” she asked. Dr Jones said it was difficult to get funding for surveys to evaluate what patients thought about the service.

Ms Walker said: “I would like to think that I do a good job and empower people. But at the back of my mind I’m very conscious of phosphate levels and how this affects the renal registry.”

But Ms Loud said the UK Renal Registry - which collects data on the incidence, management and outcomes around renal disease - was going to change to better reflect what was important to patients. “I hope we can try to get that as equally important,” she added.

What would it mean if an organisation scored badly for phosphate levels and highly for patient satisfaction? Ms Walker suggested there was some link between good numbers and good patient satisfaction, while Dr Fluck said there was an issue in that commissioners tended to look at numbers rather than patient-focused measures, but clinical reference groups were meant to bring everyone together.

Listening and evaluating

Dr O’Donoghue added that they needed to demonstrate that there were ways of measuring patient satisfaction meaningfully. Dr Fluck said there was a need to think clearly about what the important outcomes were and highlighted the Commissioning for Quality and Innovation approach.

“The challenge is delivering relevant outcomes that people can understand,” he said. “I would agree with everyone who says that the outcomes from a patient experience point of view are just as important as some of the things that we can measure in the laboratory.” Ms Loud said it was important to see quality as “not just biochemical numbers, it is the quality of care”.

Commissioners also need to gather and understand the views of patients who cannot always get to public meetings. Ms Bailey said her commissioners had recently visited the unit, met her and her staff, saw the environment and talked to patients.

Other speakers highlighted how patients made trade-off decisions. Ms Walker said: “Some individuals would say that I know about phosphate levels but I am not going to worry about it because my other priorities are feeding the kids or keeping my job.”

That presented an issue for healthcare professionals and renal consultant nurse Breeda McManus from Barts Health Trust said the question became how they could support them.

But Dr O’Donogue said patients in this position would already be on the transplant list.

“I think we reduce the burden considerably in that population if we transplant everyone who can be as soon as we can,” he said.

‘I think education and training at the moment does not involve patients from day one’

Ms Thomas stressed the importance of introducing some of these concepts early on as people entered nursing and medical training. “I think education and training at the moment does not involve patients from day one,” she said. “If we get the education right, that it is the patient and their family at the centre, then all these other things will come.”

However, changing education and training takes a long time to have an effect and what is done on the ward already often has an impact on new recruits, said Dr O’Donoghue.

And several speakers pointed out that empowerment among patients was not spread equally. Ms Loud said it was wrong to expect them to suddenly become leaders and speak to the chief executive.

Patients needed to be trained as much as nurses and other healthcare professionals.

Ms McManus pointed out the importance of peer supporters for patients and involving them in education. Patients currently get information - both right and wrong - from a number of sources including social media such as Facebook groups.

“People will post because they don’t feel they can get the information from elsewhere,” she said.

So what of the future? Dr O’Donoghue found hope in the significant number of live donors for kidney transplants and said if properly coordinated, this could enable more people to receive a transplant before they needed dialysis.

Dr Fluck indicated that change in how care was developed was needed.

“We have to be careful about static models… We don’t want to fossilise models. We need to do things in a more effective and efficient way,” he said.

Nursing and technical staff were often the ones who spent the most time with the patient and supported them. “We are not necessarily utilising the skills they are training for.”

There was support for the principles of patient choice and sympathy for patients who have to undergo the punishing regimes around dialysis, medication and diet.