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The Optimal Nutritional Care Conference 2019 – Co-creating the Patient Nutritional Pathway

Updated: Dec 22, 2019

The Cambridge Conference of the Optimal Nutritional Care for All campaign (ONCA) was held at the Cancer Research UK Cambridge Institute and University Arms Hotel on 19th and 20th November 2019. Here respected speakers from all over Europe came together to discuss and speak about good practice in nutritional care. NNEdPro had the privilege of co-hosting the conference with key organisations in clinical nutrition such as the British Association for Parenteral and Enteral Nutrition (BAPEN), the European Nutrition for Health Alliance (EHNA), Patients on Intravenous and Naso-gastric Nutrition Treatment (PINNT), the British Dietetic Association (BDA), members of Cambridge University Health Partners (CUHP) and the British Specialist Nutrition Association (BSNA).

A special thanks to the organisers of ONCA (Frank de Mann, Patrick Praaning and Joost Wesseling) for choosing NNEdPro as a venue organiser to bring the best of Cambridge to the conference and members of the NNEdPro team who supported the organisation process were Jorgen Johnsen, Matheus Abrantes and Sumantra Ray along with Michael McGirr and Jonathan Lang who supported logistics during the meeting. Minha Rajput-Ray and Harrison Carter were key NNEdPro speakers at the event.

Presentations and more pictures are available at here.

Day one:

Welcome remarks from Professor Olle Ljungqvist, Dr Trevor Smith and Professor Sumantra (Shumone) Ray.

The conference kicked off with a welcome message from Professor Olle Ljungqvist, Chair of ENHA followed by Dr Trevor Smith, President of BAPEN. Our own Founding Chair and Executive Director of NNEdPro, Professor Shumone Ray continued the welcome remarks reminding everyone that Cambridge has been the academic home to 120 Nobel Laureates and 14 British Prime Ministers. In addition to, on the very ground close to where the first day of the conference was held, at the Medical Research Council’s Laboratory of Molecular Biology, Watson and Crick discovered the double helix of DNA whilst more recently Ramakrishnan elucidated the structure of the ribosome. Also on a more nutrition-related note, in Cambridge there has been a 90-year legacy of Human Nutrition Research owing to the seminal insights of Elsie Widdowson and Robert McCance – perhaps the first known scientific partnership between a dietitian and doctor that has been so ahead of its time – this has formed the basis for our modern understanding of nutrition as a cognate scientific discipline.

Professor Ray ended his welcome remarks by implying that this conference is an opportune moment to re-discover the potential that optimal nutrition can have both in the prevention and treatment of illness. He also pointed out that this journey is of course not without its hurdles but that the path that ONCA and its partners have set out will accelerate both implementation as well as impact in nutrition for patient and population benefit.

The Trinity: Patients, Professionals and Decision makers

The Decision makers

What do politicians need to know and how can politics help further improve the person-centred nutritional care?

Lord Andrew Lansley, shared his story as a former cancer patient. He discussed that the implications of disease, not just on physical health, but on mental health and the burden that this places on loved ones as well as oneself. He highlighted that over the past 3 years when hunger and poverty have been on the rise whilst simultaneously obesity is increasing across the globe, there is an issue trying to tackle obesity and malnutrition at the same time. He emphasised that nutrition has a massive effect on patient outcomes and that the NHS responds to leadership, however different leadership brings different outcomes, currently the NHS is leading itself, but a dedicated clinical nutrition leader is required. Lastly, he ended with pointing out that patients benefit from long term follow up nutritional advice but that not everyone receives this, many patients leave the hospital with a poorer nutrition status than prehospital, from this we can determine that post hospital nutrition care is definitely required.

The new health and social care landscape in the UK: opportunities to improve nutritional care

Ben Howlett, Managing Director of Public Policy Projects, talked about nutritional policy and the current reforms and health landscape with an aging population and growth in demand. There are more than 1.3 million over the age of 60 who are in or at risk of malnutrition. He continued to say there is a lack of emphasis and in the new UK health and social landscape there are opportunities to improve nutritional care. He further implied that we should learn from each other countries represented in ONCA to imply them to UK too. He highlighted the report on the importance of nutrition to the integrated care debate and its view on a better nutritional practice, collection of data, education and training of health professionals, and lastly a description of a whole system approach. He ended his talk going through the nine recommendations on which you can find further detailed information in the report.

The Societies

BAPEN, PIINT and UK Malnutrition Awareness Week: Good Practice in multidisciplinary collaboration

Carolyn Wheatley the chair of PINNT discussed putting patients at the centre of good nutritional care, to have the ability to facilitate a quality support and education network for patients receiving artificial nutrition, to connect the patients so as they do not feel isolated. She expressed it is important to ask the right patients for their opinions. Because the least vocal patients are the ones who are struggling and require the most focus. Lastly, she highlighted that there is a need to engage widely to develop and acquire the right resources for patients. BAPEN and PINNT are committed to improving the nutritional care for patients and with the help of their collaborators promise to consult, engage and listen.

Trevor Smith, President of BAPEN, continued the topic of empowering people to take responsibility and self-screening for malnutrition risk and highlighted the UK malnutrition awareness week. He further explained key messages such as being clear that losing weight is not a natural part of ageing; look out for relatives, friends and neighbours; and check your own weight and that of your loves one using an online self-screening tool. Furthermore, he specified that health and social care professionals should: increase the use of the “Malnutrition Universal Screening Tool (MUST)”; and submit nutritional screening data to BAPEN’s nutrition portal to help collect UK malnutrition data.

The Patients

Are the needs of individual patients being met?

Monika Malickova, a parental nutrition (PN) patient from Czech Republic and the head of the international patient group ‘PACIFHAN’ talked us through the desire to ensure equal access to care and equipment whilst prioritising areas of greatest unmet need. PACIFHAN are tenacious as they are committed to ensuring complementing the health care and services that patients receive. Monika also discussed the importance of raising awareness for Home Artificial Awareness (HAN) whilst simultaneously working in unison to improve quality of life and provide a network of support for patients as no two patients are the same. She also called for collaborators to work synergistically “If we work together then everyone achieves more, we need to be united”.

Patient safety in nutritional care

Dr Frances Healy who is the Deputy Director of Patient Safety for National Health Service improvement / Education (NHSi/E) discussed finding a way of addressing problems before they lead to harm, highlighting that there should be prioritisation of updating practice standards on a global level, whilst sharing what we know to be true and works for the NHS with other countries so that we can all collectively strive for better global healthcare education, by working on prevention and implementing proper and consistent training. We can effectively assume the role of planning and coordinating the education of several generations of healthcare workers on new and improved medical practice. He ended with a discussion of the importance of food labelling the correct product, information and allergens on hospital foods for patients and the detrimental consequences which can so easily be avoided as an example of learning from the past mistakes to improve the future of healthcare.

Updates from Paris, keynotes and plenary debates 4 content tracks by patients and professionals

Prevalence and Economics studies

Pavel Tesinsky reminded us all malnutrition is still a problem even in highly developed countries, however, a problem does not exist if not recognised. There is a current problem of recognising, defining, consequences, impact and providing a solution for malnutrition, however, there is a solution that is being worked on. He continued with stating that malnutrition is a health, social, public and economic problem, and there is a need to put malnutrition on a public health agenda. As a world free from all forms of malnutrition where all people achieve health and wellbeing provides a far less strenuous and more bountiful society. There have been collective efforts to advance nutritional care, validated screening tools provide consistent criteria across different groups, care settings and countries. Nevertheless, there are also economic considerations: the cost of disease and how much does malnutrition cost our health service or the patients? He ended with discussing that what we need to do is to treat malnutrition as a major public health issue and provide a model that can be adapted and applied to treating the crises. There is a unified need of building health and economic data into an effective communication strategy so that we can improve on the current situation. ONCA has provided a platform for a bridge between clinicians, scientists, patients, politicians, media and public. Lastly, his take home message was “We need to make scientific data more available and support education at every level”.

Nutrition in Medical Education, patient versions of nutrition guidelines

Cristina Cuerda updated the audience on ESPEN’s nutrition education in medical schools (NEMS) where she elaborated what was learned from the ONCA Paris meeting in May 2019. She continued by presenting the results of an ESPEN survey on NEMS and contents of the ESPEN position paper within ONCA delegates. She had previously presented the paper at NNEdPro’s 5th International Summit on Medical and Public Health Nutrition Education and Research in Cambridge. Their work has received interest of collaboration from international network for health workforce education, European Hospital and Healthcare Federation (HOPE), and Standing Committee of European Doctors (CPME). She ended her presentation by proclaiming the next EPSEN NEMS meeting on January 19th 2020.

Cristina was followed by Gaston Remmers from the European Patient Forum (EPF), where he expressed aims should first and foremost raise awareness of the role of nutrition and diet in managing long-term conditions, maintaining optimal health and quality of life. He continued to explain that EPF provides a strong patients voice to drive better health in Europe. He ended with a discussion of the enormous potential for creativity whilst acknowledging the contribution and ingenuity of patients to nutritional skills developments in care institutions.

Nutritional care in hospitals and the community

Elizabet Rothenburg discussed the need for nutritional care not only in hospitals but throughout the community. There is a structured and preventive care process for preventing adverse events by identifying risks at an early stage. The sooner the risk has been identified the sooner and easier we can effectively analyse the causes and plan an intervention before a follow up. She continued pointing out that malnutrition affects multiple problems that are intertwined leading to multiple morbidity. However, not all those at risk of malnutrition receive preventative measures or the treatment that is needed to help identify the causes of malnutrition in individual cases. At the end she pointed out we need nutrition teams to be more inter-professional including dietitians, physios, occupational therapists and dental health specialists to ensure the top level of care for our patients.

Internist, Medical Director In-Hospital Nutrition Program Amsterdam UMC

Martin Soeters discussed that malnutrition leads to longer stays in hospitals for patients. He wanted to highlight there has been an estimated cost of malnutrition done in the Netherlands which is upwards of 1.8 billion Euros. He continued to point out we know that there is a need to address malnutrition not only to improve the quality of healthcare but to reduce the economic burden on our global healthcare systems. There is a need for better care, education and research. Regarding care there is a need for better food throughout the care facilities that we provide so that we can deliver the taste and choice of food that the patient requires and also ensuring the optimised intake of macro and micronutrients. Lastly, he mentioned education and the need to effectively ensure that our nutrition assistants, nurses, doctors’ medical students and patients are all on the same wavelength involving nutrition education and the importance of taking preventive measures when it comes to malnutrition and motivating patients to eat.

Public awareness and policymaking

Rachel Power, Chief Executive for the Patients Association, presented the value of building relationships with the public on compassion, collaboration, inclusion and empowerment. The vision is one of a society where we collectively work together in unison to enhance the physical and mental wellbeing in our communities and individuals whilst improving the quality of the services that are provided, maximising input and eradicating waste. Working together cannot be a one-size-fits all exercise. However, there are principles for working together that hold true universally. She ended with the need to accommodate the individual and collective needs of our patients in addition to committing to working together on a personal, organizational and long-term basis. The desirable principles for achieving the most while working together are to be proactive, be prepared to invest time and effort, empowerment ensure that all the resources are accessible and shared with everyone so that all can contribute to the decision-making process.

Co-creating the patient pathway

Follow up Paris Spring Meeting: Outcomes ONCA survey

Joost Wesseling from ONCA presented the headlines from the explorative survey with 84 participants from 28 different countries. Some of the main considerations by the participants where: education (in staff and patients); evidence-based practice/protocols; multidisciplinary team/network/communications; integrated nutritional care into existing pathways or protocols in medical and surgical units; screening/assessment; and monitoring medical therapy/reimbursement. He concluded from the patient nutritional pathway survey that it is an important and inspiring topic and the pathway will continue to be an important topic for the campaign. It has created a lot of valuable input for next phase research: together with ONCA members and their communities.

Integrating nutritional care into the patient pathway across health and social care systems: Why and how?

Dr Rebecca Stratton, Chair of BAPEN Malnutrition Action Group, pointed out that malnutrition is still costly to patients and society. Thus, to improve identification of malnutrition and use of the right nutritional care to improve outcomes, to benefits patients, saves money and benefits society. She further explained we must continue to embed screening and treatment into practice across health and social care by embracing technology. Learn from others, empower other professionals, work across disciplines, settings and keep the relevance. Moreover, to use evidence, guidelines and pathways nationally and locally to improve malnutrition management. This could be done by involving patients and carers. She finished by encouraging us to be strongly vocal about malnutrition and be confident in the value managing it brings to patients and to society.

Experiencing a patient pathway

Marek Lichota, from Appetite for Life, was diagnosed with Crohns Disease in 2002 and experienced a haemorrhage in 2005, subsequentially, he required four surgeries which cost a lot of time and pain. He felt that there was a lack of nutritional support as he ended up severely malnourished resulting in a weight of 48kg. He further discussed the patient’s perspective with an eye-opening talk regarding a lack of nutritional assessment at key stages in the patient pathway. In addition to this, the clinical significance of chronic disease is responsible for 85% of deaths in the EU and 80% of healthcare costs. Marek called for the data to be shared so that we can collectively improve the quality of care that is provided for patients. In recent years a larger part of the patient pathway has taken place online. There is a need for quality patient content that could be available via websites or social media as currently the scale of information available on social media is to vast to access quality relevant information by harnessing social media to deliver good nutritional advice from healthcare professionals. This will allow us to become closer to patients to lead their nutritional pathway. Marek has now got his quality of life back with parenteral nutrition.

How can we learn from a (Digital) Customer’s Journey

Dr Pawel Kabata, from the Medical University of Gdansk, talked about the importance of influence that social media and internet has on people. He continued explaining the issues with his experience as a social media medical influencer where storytelling mixed with health promotion and education reach out too many followers. The digital patient pathway is where technology meets medicine and he urged us to take control of the pathway with good quality content that could attract, be patient tailored and disease specific. He further explained that in todays rushed society website versus social media plays a bigger role. Social media gives a direct viewer feedback with real time engagement while websites are a reliable source of information it is often too much for the general person. He finished the first day of the conference by encouraging us to be more active on social media by spreading the real-life content, using our own experiences or patient stories, make people engage by sharing stories and hide the science inside, thus, being closer to people to lead the nutritional pathway.

Day two

Introductions Exchange Good Practices

Nutrition Education in Healthcare Practice: Implementation Pathway Project

Our own Dr Minha Rajput-Ray NNEdPro Medical Director and Dr Harrison Carter of the NNEdPro Collaborators Network started the day by presenting the Nutrition Education Policy for Healthcare Practice (NEPHELP) initiative. They had previously presented the winning proposal for this work at the Medical Nutrition industry International Awards at ESPEN in 2017. It was developed from a need for multidisciplinary approach to nutrition care in hospitals recognised by many of the doctors participating in the 2018 Cambridge/EoE Junior Doctors study with patients and carers sub-study. Some of the key findings from the sub-study were: 50% had never spoken to a doctor about food or nutrition, believed doctors do not have enough knowledge or time and will not advise them on food, and patients and carers who were provided with nutrition advice often could not follow due to lack of understanding of technical term and lack of guidance on actual food choices especially in disease conditions affecting intake. They continued their presentation by highlighting the launch of NNEdPro UK and Ireland regional network and the nutrition implementation coalition (NNEdPro, ERimNN, Nutritank and Culinary Medicine UK). They ended their presentation by laying out the next steps towards integrating capacity building and care pathways, where some of the steps are patient centred educational standards should be formulated across undergraduate and postgraduate curricula and form part of mandatory training in the NHS.

Essential steps in the Nutritional Care process

Dr Clare Shaw, Consultant Dietitian at the Royal Marsden NHS Foundation Trust, discussed the management of malnutrition and focused on nutrition screening and assessment and diagnosis of malnutrition in the nutrition care process. She expressed that nutrition screening tests must be sensitive to identify those at risk while specific to rule those not at risk and enough training for effective implementation is needed. The improvements in identification of malnutrition and management rely on a sensitisation of the multi-disciplinary team by clinical dietitians, physicians and nurses. This can be achieved by feedback on progress of projects, daily ward huddles and weekly nurse update meetings. Lastly, she discussed the importance of targeted nutrition interventions and individualised nutrition support.

Workshops on: Good practices exchange market; and how can we develop the campaign to serve individual EU patients’ needs and drive self-care?

At the end of the last day’s session the conferenced held a workshop where the delegates could contribute and shape the patient nutritional pathway. At first, they were divided into round tables for interactive exchanges between the country delegations where good practices were discussed. Each table then presented their key points at the end of the first session.

The second session divided groups into interactive brainstorms following up yesterday’s plenary discussion to develop/continue the ONCA campaign’s four content trackers: Measure, Education, Implement and Influence. Each delegate had been assigned one of the four content trackers out of their own interest of methods. Both sessions were documented to be presented in the next ONCA conference in 2020.

At the end of the last day Frank de Man and conference chairs summed up the conference and confirmed that the next ONCA conference will be held in Denmark 2020. Stay tuned for more information!

Written by Michael McGirr, Jonathan Lang and Jørgen Torgerstuen Johnsen.

Edited by Sumantra Ray.

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