Spotlight on renal care
Here we share some examples of person-centred approaches in renal care, where people living with kidney disease reported greater control over their illness and greater confidence.
Shared Haemodialysis Care in Yorkshire and Humber was initially funded through the Health Foundation’s Closing the Gap through Changing Relationships improvement programme and the team approach is now being spread across the UK.
Salford Renal Young Adult Transition Clinic is taking a person-centred approach to young adult kidney services. Dr Christine Chrysochou explains their new way of working.
Yorkshire and the Humber Shared Haemodialysis Care have embeded shared haemodialysis care across the six main renal units and 20 satellite haemodialysis units. The team are continuing to spread shared haemodialysis care throughout the UK.
- Patients reported greater control over their illness, an increase in confidence and feeling more able to ask questions about their treatment.
- Staff reported an increase in job satisfaction and greater respect for patients as they became more involved in their care. Nurses saw patients as part of the team and engaged more closely with them before, during and after dialysis.
What is shared haemodialysis care and why is it important?
Every year, approximately 20,000 people with kidney disease in the UK receive dialysis. Kidney dialysis is an essential but demanding procedure, which removes waste and excess fluid from the blood. It usually takes three to four hours at a time, three times a week.
Because of the nature of the treatment it can disrupt every aspect of a person's life, and have a major impact on their emotional and economic well being.
There has often been little opportunity for individuals to play an active role in their care, leading to an experience of treatment as inflexible, demotivating and disempowering. There is evidence that it often leaves people feeling helpless and dependent on hospital staff, as well as having a huge impact on the lives of patients and their families.
Evidence also shows that many people enjoy taking an active role in their treatment, and that doing so can lead to better outcomes and improved quality of life. Shared haemodialysis care actively engages patients in their own dialysis care, supporting patients in dialysis units to undertake tasks involved in their own treatment as much as they want to and are able.
Yorkshire & Humber Shared Haemodialysis Care Programme
The Shared Haemodialysis Care programme in Yorkshire and the Humber was part-funded in 2010 by the Health Foundation's Closing the Gap through Changing Relationships Programme and led by a multidisciplinary team of professionals and patient partners.
Working across Yorkshire and the Humber, the programme aimed to enable individuals to take control of their care by developing a system of self-management, where nurse facilitators train and support those people who want to manage aspects of their own care. Routine tasks for individuals range from weighing themselves and taking their blood pressure to inserting needles or cannulas and setting up their dialysis machine.
Importantly, patients and clinical staff worked in partnership, with patients developing increased control and decision making, while receiving the level of support they needed.
Training patients to carry out many of these tasks for themselves meant they could start treatment as soon as the dialysis machine was available, with staff on-hand and available to advise when needed.
The approach is focused on delivering adult education and motivating patients and healthcare practitioners to introduce shared haemodialysis wherever possible.
Learning and successes
Patients who took part in the programme welcomed the opportunity to take responsibility for aspects of their care and many shared compelling personal stories of the difference it made to their lives. One patient commented: 'I was really depressed when I first started haemodialysis. However, since I've started shared haemodialysis care I actually look forward to coming for dialysis.'
Patients reported greater control over their illness, an increase in confidence and feeling more able to ask questions about their treatment.
Staff reported an increase in job satisfaction and greater respect for patients as they became more involved in their care. Nurses saw patients as part of the team and engaged more closely with them before, during and after dialysis.
There was more dialogue between patients and nurses in the shared haemodialysis care areas, as well as between the patients themselves.
Staff were able to spend more time with patients who needed more support or were not involved in shared haemodialysis care, which improved the quality of their care.
The long term ambitions of the project are to conduct a health economic evaluation, with more robust evidence of hard outcome benefits for patients.
Ultimately, the programme was inspired by the enthusiasm and commitment of team members including patient partners and nursing staff. Through this work the team glimpsed the possibility of true partnership between patients and health care teams to improve the management of long term kidney care.
Melinda Howard, Renal Matron at York Teaching Hospital NHS Foundation Trust
I think that shared care is like anything - if you have more control over what you do in life, it makes you feel much better about yourself. It gives you more confidence and certainly more independence. Research has shown that people more involved with their care are certainly much more likely to adhere to their treatment. There's also enough research to show that their life expectancy also increases. So there are real benefits for patients who are involved and have a choice in their care.
If you see patients before shared care and then see them afterwards, you can see the change: they're much happier in themselves, they are not restricted by how the units are run, they don't have to wait for the nurses and they can work around their lives. They're now actually in charge of their care. Shared care means that any time there is a health care professional around to help and support them.
Patients report having a better quality of life. I remember one of the clinicians telling me how she had a very young patient who wasn't settling in to her treatment routine and wasn't interested initially with shared care. However, when the young woman learned bit-by-bit how to take on aspects of her care for herself, it transformed her life and it transformed her relationship not only with the staff but with her family as well. That's what shared care does - it doesn't just stop in clinical area it has a positive impact on a patient's relationship with his or her health professional and on their family life as well.
There is a lot to be said and heard about shared care and it doesn't just stop at dialysis. These shared care patients on dialysis are also patients with other health conditions. What they find really frustrating is that we're empowering them to take on as much care as they want in their dialysis care, but when they become patients elsewhere in the system or for other conditions, their shared care goes out of the window.
We should think about how we can make sure that person-centred care isn't restricted to small pockets, such as renal services and renal units up and down the country. How can other areas empower patients and support them to manage and much more of a say in their care? We need care to be more person centred across the UK.
I was diagnosed with kidney failure in 2007 aged 50. Around nine months later I started hospital based haemodialysis: a regular treatment lasting several hours which removes waste from the blood. I found this quite daunting at first and wanted more independence around my own treatment. I soon began to realise that this was a reality. Through the support of my health care professionals I began to take more control of aspects of my care. This was an important step towards person-centred care.
One of the most important aspects of person-centred care is both the patient and the clinical team having the confidence and desire to learn and do more together. Being able to administer my treatment myself instead of relying on other people helped me to feel a lot better and made my care much more effective, as I was receiving tailored support where it was most needed.
You are always aware of those patients who need more dedicated care and attention than yourself. Adopting a person-centred approach and having more control over my treatment allowed the health care team to focus their time on other patients who needed more attention than I did. I didn't have to wait as long to do my dialysis, as I had more direct control over when this was administered.
Initially, there is considerable time invested in helping patients to learn to do more aspects of their treatment, but as this knowledge grows there is much less unnecessary clinical contact between health care professionals and patients, which is beneficial for both parties.
As a result of taking part in a person-centred care programme, my life changed enormously. I felt better and had a lot more freedom. I could also look after myself when away from the renal unit on holiday, which was a big benefit. Vital to a person-centred care approach is ensuring that there is regular interaction and strong relationships between doctors, other health care professionals and patients. Having the patient and the health care professional working together in equal partnership is a strong catalyst for behaviour change and means that the end result is always a lot better.
Andy received a kidney transplant in May 2011. He is now a patient advocate.
I was first diagnosed with inherited polycystic kidney disease in 1985, a condition which sees the gradual deterioration of the kidneys. In 2005 my kidneys suddenly failed and I began the haemodialysis process, which is a regular method of treatment lasting several hours which removes waste from the blood. However, I wasn't prepared for the disruption it posed to my life.
I was 55 years old with a big family and a business I had run for 25 years. I travelled all over the world and at short notice too. I was concerned that the time it would take to receive haemodialysis would threaten my good quality of life which I loved so much.
I often had to wait a long time for dialysis treatment, sometimes for over two hours; I really disliked the regimented way of receiving treatment. I soon realised that freedom was the key. I wanted more control over where and when I could start and finish my dialysis. More independence over my care would allow me to maintain my quality of life.
One particular nurse was supportive of my ambition. She had a person-centred care approach and taught me how to manage my own dialysis treatment. The improvements were striking; more flexibility meant better quality dialysis and, in turn, a better life.
I was no longer reliant on local anaesthetic and I was also less prone to needing treatment for cramps and low blood pressure. Knowing more about how to manage my condition effectively also inspired me to improve my diet and nutrition. My treatment became a lot more focused, reducing my dependence on other specialists.
Because of the complex nature of renal disease, my nephrologist Dr Paul Laboi took on responsibility for all aspects of my care and for any minor complications that I had - whether a cold or a more serious virus. Being able to consult Paul directly has significantly reduced the amount of time that would have been needed for me to consult other medical professionals - I can now just text, email or call Paul if anything's wrong. In my four years of dialysis I was able to work and travel continuously because I was in control. I dialysed throughout Europe, Middle East, USA and Canada.
There's been a growing awareness over the past few years that we're not just trying to cure a patient's 'problems' when they're ill. We're starting to make things person-centred, giving people a decent quality of life. I'll always be eternally grateful to the nurse who was supportive of me taking a person centred care approach - it gave me my life back.
Paul Laboi, Consultant Nephrologist at York Teaching Hospital NHS Foundation Trust
In our dialysis units, we have people who are capable of taking care of themselves but had to depend on dialysis staff to receive care. The moment we started breaking down boundaries and helping people to do their own tasks and engage with professionals, their experiences suddenly got better. We collaborated to bring these pockets of Shared Care from Harrogate, Easingwold and Sheffield together. We pooled our learning, standardised resources and created a shared care course for nurses - this is how the project with the Health Foundation was started.
Patients experience kidney failure, dialysis treatment and its side effects. We clinicians barely understand what this feels like. Shared Care creates a positive culture of healing characterised by tolerance, listening, empathy, compassion, humour, respect, safety and support. In this environment, patients are able to discuss their experiences of illness and treatment with their nurse partners. They are also able to learn skills from getting involved in dialysis related tasks, gaining an understanding of their condition and taking control of their care. Nurses trained in shared care feel empowered that they make a difference. Understanding patients' experience has resulted in mutual respect and confidence, allowing the blurring of traditional boundaries between the passive patient and the 'all powerful' dialysis nurse.
Shared Care has resulted in a collaborative relationship between the active patient and the health care facilitator, allowing them to plan, negotiate and make decisions with patients, who are truly leading their care planning. Shared care gives individuals more control and responsibility in their own care - and they've taken it with open arms. It transforms the person from being a patient into an individual, and they create value by being involved in their care. I think that's the most important thing. Shared care gives people the confidence to be a person rather than a passive patient.
Dr Tina Chrysochou, Renal Consultant
Renal failure is rare for young people, who make up only 10% of the renal population. Yet it is a severely debilitating condition quite different from other long term conditions, affecting people's body image, independence and becoming a very visible and prominent presence in people's lives.
When I first began working in Salford Royal NHS Foundation Trust there were lots of young people using the renal services who said they felt isolated and had no sense of community to help them deal with these challenges.
After I looked at the outcomes data for Salford renal services, which showed heavy re-referral rates and non-compliance with treatment programmes among young people, I knew something had to be done.
I brought a group of young patients together to discuss their experiences. Regardless of their backgrounds, most people kept addressing the same challenges, namely that their personal circumstances weren't properly appreciated by the medical teams, which had resulted in them becoming disengaged with their care.
With the focus group participants, I devised a five point wish-list for young people's priorities in the renal services at Salford, which included the following main themes:
- More personalised care, to be treated 'as a person not a kidney'
- Continuity of care and the chance to build relationships with the same health care professionals
- More tailored information for young people and young adults
- More readily available counselling services for times of crisis
- Community and peer network for young people to share experiences with those who had been through the same challenges
Working in conjunction with Department of Health guidelines, we set up the Salford Renal Young Adult Transition Clinic.
The clinic is multi-disciplinary in its approach and operates once a month, giving young people the opportunity to see me as well as the same nurse, psychologist, dietician, Citizens Advice Bureau (CAB) representative and joint consultations with a urologist. We also have young people with previous experience of going through the renal programme who act as mentors for the programme. Alongside this, we have a dedicated social area to allow young people to socialise and share their experiences with others.
Patients first see a nurse, who is able to provide a holistic assessment of young people's life circumstances and personal situation. These allow any clear challenges to be identified quickly, helping us to make a call on any treatment options before the rest of the multi-disciplinary team is consulted.
Everything we do has a tailored, individual approach with the clear focus of recognising patients as key stakeholders in their own care. We also have a young adult network group outside of the clinic to offer additional support.
What people often don't realise about living with renal failure is the hugely detrimental impact it can have on people's careers and financial situation. Lots of our young people felt they had been unfairly treated by their employers as a result of their condition. They had often lost their jobs and faced discrimination. On the flipside many had been so anxious not to miss work that they skipped hospital appointments which set back progress in their treatment.
We had one patient who, after suffering from renal failure, lost their job and had to endure massive financial and social difficulties. Our clinic secured funding to help him access an IT course, and he is now working for an IT company with a good salary. He has huge motivation and now acts as one of our mentors for other young people.
The person-centred approach of the clinic has been a huge success in its first year. We've had around 55 young people come through the clinic in a year, with roughly 130 people in the network group.
Now, our ambitions are to complete further data analysis of the impact of the clinic. Sustainability is a challenge and we're keen to learn how we can maximise the chances of improving long term outcomes. We'll soon be getting a youth worker, which will be a huge boost to helping the social side of the network. We want the network and mentor programme to grow and expand.
Patients need to be educated and empowered in health care. In our renal unit there's lots of awareness of shared decision making - I think our whole trust is progressive in this sense. I can't envisage success without our patients feeling involved, and this cultural shift in health care is important.
Shared Haemodialysis Care
The team in Yorkshire and Humber Shared Haemodialysis Care have a range of free resources available for those interested in finding out more.
- Starting shared care
If you are based in a dialysis unit that is considering or new to shared haemodialysis care. Here are some tools to help you.
- Audit and CQUIN Tools
The team have developed a number of audit and CQUIN tools.
- E-learning for nurses
Shared Haemodialysis Care nurse training course was the corner stone in the development of Shared Haemodialysis Care programme. This course was developed by a team of experts, Melinda Howard (Renal Matron, York Hospitals), Chris Stubbs (Renal Matron, Sheffield Teaching Hospitals), Collette Devlin (Shared Care Educator, York Hospitals), Tania Barnes and Katy Hancock (Shared Care Educators, Sheffield Teaching Hospitals).
Based on this award winning course, an E-learning programme was developed by Sheffield Teaching Hospitals. For more information: http://www.shareddialysis-care.org.uk/e-learning
- Nurses teaching resources
There are teaching resources the team have used in their training sessions and in the e-learning module. They include a nurse's journal, teaching plans, course work, cascading tips and competencies.
- Find out more:
To find out more about shared haemodialysis care please contact the team here
Support for people living with kidney disease
- Kidney Information Network (KIN) was developed by people living with kidney disease. It has a range of resources for patients.
- Young Adults HKPA Network, a network under the umbrella of the HKPA dedicated to young adults.
- The NHS England Youth Forum works with NHS England, Department of Health and Public Health England to improve healthcare for young people. They have a Facebook page
- The National Kidney Federation is the national kidney charity run by kidney patients for kidney patients. The organisation campaigns for improvements to renal provision and treatment, and has a range of support services.
- British Kidney Patient Association is a charity working to improve the quality of life for adults and children with kidney disease. They provide information and advice for those with kidney disease.
About person-centred care
- Person-centred care made simple read the Health Foundation's quick guide to what everyone should know about person-centred care.
- What is person-centred care?, our online tool that explores why person-centred care matters through a series of interviews with health professionals and people who use services. http://personcentredcareintro.health.org.uk/
- Person-centred care timeline - the key activities that have shaped the person-centred care agenda, from the 1960s to the present day.
Shared decision making
Shared decision making is a collaborative process in which patients are supported by their healthcare professional to select which of the available options they wish to choose. It brings together in the consultation, or conversations, the best scientific evidence and the patient's values and preferences.
Self management support
Self-management support is the help given to people with long term conditions to enable them to manage their health on a day-to-day basis.
- Starting shared care
I began dialysis when I was nineteen. I had dialysis at home for three years, but I was fortunate to then have a transplant from 2005 to 2010. It was November 2010 when I needed to transfer back to dialysis, which I started in York. This was three days a week, with four hour slots. However, the process was always far longer than four hours - a session scheduled to begin at 4pm, could result in my return home at a time as late as 12.45am; four hours easily became six, seven or eight hours spent not just at the hospital, but travelling, waiting for other patients to finish and preparing for dialysis. There was no flexibility and I was scheduling my life around dialysis.
I had already begun taking a greater role in my dialysis at York which made the transition to self-care quite easy. I began self-care properly in December 2010 and the benefits for me were huge. Travel times to hospital were greatly reduced as I didn't have to rely on hospital transport any more. I was able to change the dates and times that I chose to come into hospital depending on other commitments, such as half term holidays, for instance. Having this choice made it much easier and allowed me to spend more time with my children. I also saw a really positive change in my children who were able to spend more time with me. As a result of self care I was given the freedom to drop them at school and pick them up.
The flexibility offered by self care meant that I could dialyse myself five days a week instead of spending longer in hospital across three days a week. My blood pressure dropped as a result and far less time was wasted.
I have a pretty positive attitude to dialysis. Many people can be quite miserable, I think it's because they see dialysis as something which holds them back, whereas I see it as a necessity - just like brushing your teeth or having a shower. I wasn't always like that, I once missed thirteen days, during which I refused to take medication, and I was incredibly ill after that. This episode really changed my outlook, and I have tried to be positive about it since. It helps that I am surrounded by friends and family who don't let me get down about it, but instead make jokes which makes it easier. If I'm out with one of my friends, she'll ask strangers "Will you buy her a drink? She's dying". Joking about it definitely helps.