IN ASSOCIATION WITH THE NSPKU
IMD WATCH
METABOLIC DIETETICS Suzanne Ford NSPKU Dietitian for Adults
IMD watch turns the tables and shines the spotlight on the people who practice Metabolic Dietietics - who, what, where and more importantly why?
Suzanne Ford is a Metabolic Dietitian working with Adults at North Bristol NHS Trust and also for the National Society of Phenylketonuria).
I asked some enthusiastic and committed metabolic dietitians who work in a range of settings, why they chose this career path, how they came to get involved with Metabolics and what their jobs entail. Working with metabolic patients involves manipulation of carbohydrate intake, or fat intake, or
protein intake and sometimes in various contexts of tube feeding, pregnancy, supporting sporty lifestyles, or just getting safely through a day at school. Often in metabolic disorders there is no other treatment, only diet, so the work is intense and detailed and the responsibility can feel significant.
Figure 1: Metabolic pathway changes in different types of Tyrosinaemia (and also phenylketonuria).
STEVE KITCHEN: TEAM LEAD FOR IMD DIETETICS, BIRMINGHAM WOMEN AND CHILDREN’S NHS FOUNDATION TRUST Caseload: Babies and children with all IMD conditions specialising in Glycogen Storage Disease and Tyrosinaemia.
Steve got into Metabolic Dietetics about four years ago - Steve was attracted to the unknown and complex nature of Metabolics and by the passion of the Birmingham IMD team. He had worked in both acute and community work, with complex care, food allergies and home feeding among his caseload. Since starting his metabolic post, Steve has enjoyed a very steep learning curve and is still learning all of the time. In practice, knowledge of biochemical pathways and clinical reasoning are key, whilst being able to tailor feeding plans to individual patients. No one patient is the same - Steve cites the examples of Glycogen Storage Disease – these are categorised by 14 different types and within those groups a/b/c variants along with phenotypic variation of the patients. Steve says, it requires a lot of patient contact to get some patients to 'stable' and close monitoring is required alongside working within the multidisciplinary team. Typical day: Clinics, inpatient work, home visits and managing the Metabolic Dietetic team at Birmingham. 48
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A group of enthusiastic conference goers, many of whom were exhibiting poster abstracts or presenting orally at the International Congress for Inborn Errors of Metabolism, 2017 left-right back row: Ewan Forbes, Sarah Adams, Lesley Robertson, Melanie Hill, Tanya Gill, Joanna Gribben, Orla Purcell, Carolyn Dunlop, Dr Alison Cozens. Front row left-right, Hayley Altenkirch, Suzanne Ford, Alex Pinto and Clare Swzec.
JO GRIBBEN: LEAD PAEDIATRIC METABOLIC DIETITIAN, EVELINA CHILDREN’S HOSPITAL, LONDON
Jo has been at the Evelina Children’s Hospital for 17 years (before that she had a rotational paediatric job at Great Ormond Street). Jo works three days a week managing her team and working clinically with infants and children with a range of metabolic conditions. Jo says she loves her job as every day is different and there is great job satisfaction. She uses her knowledge from university of biochemistry, nutrition and sociology to interpret biochemical pathways and translate complex diets into practical and achievable diet plans. Jo and her team work alongside a dietetic assistant devising pictorial plans to ensure that non- English speaking families, or those who have literacy problems, can comply. She likes to think that her team can teach anybody! Apart from teaching patients, Jo also enjoys teaching new staff members, dietitians on the BDA Module 4 and visiting dietitians from abroad. There is always more to learn in Metabolic Dietetics and so one of the frustrations is not being able to get everything done. The Evelina has a great multidisciplinary team which includes a team of specialist nurses, psychologists and medics and the adult service is very closely located, so helping patients transitioning seamlessly within the same hospital and trust will have significant advantages (and this is quite unusual in the UK). SUZANNE FORD DIETITIAN ADVISOR FOR NSPKU - NATIONAL SOCIETY FOR PHENYLKETONURIA Caseload: Potentially 6,000 people in the UK who have Phenylketonuria (PKU).
Nearly 10 years ago, I started work with a caseload of adult metabolic patients at North Bristol NHS Trust, where I still work as a Metabolic Dietitian. Eight years later, I applied for this job and added Freelance Dietitian to my CV by joining the NSPKU. Since then, I’ve learnt much more about the low protein diet, PKU living and the PKU community in the UK. I’ve improved my tweeting skills and event management skills, as well as dietetic knowledge. I have a lot of flexibility in my work - on home working days I can start at 6am, have a two-hour break for errands or keep going till 10pm if I want to. www.NHDmag.com February 2018 - Issue 131
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IMD WATCH Typical day: There isn’t one! I’ve scoured online shopping websites for low exchange foods, I’m arranging for phenylalanine analysis on a range of foods, writing articles for News & Views (the NSPKU magazine), developing Christmas recipes, or highlighting new products. Away from home: I design the programme and menus for the annual NSPKU conference, I’ve helped run a study day with Louise Robertson, (Adult IMD dietitian) and I’ve just run a multidisciplinary meeting on PKU treatment access. The two most surprising events were speaking in the House of Commons at an event for MPs on International PKU Awareness Day and also appearing on the BBC News Channel to explain PKU following a court case about access to a drug treatment for PKU (BH4 known as Kuvan). NSPKU have set up a YouTube channel so both these appearances can be viewed over and over again! I still work in the NHS and this combination provides huge job satisfaction; my patients give me indepth and authentic feedback! (Twitter Fans look for @NSPKU and please do follow). ANNE DALY: SENIOR METABOLIC PAEDIATRIC DIETITIAN (INCLUDING RESEARCH) Caseload: Older children and teenagers with PKU; babies and children with organic acidaemias
Anne does clinical practice three days a week and research two days a week. The absence of other treatments is very motivating and makes the dietitian’s role indispensable. Patients are the lifeblood and the satisfaction is seeing the impact of your dietetic treatment on their clinical wellbeing. The challenge of the rare conditions is that you are designing the main treatment, the diet therapy and it is very bespoke to every child. The research element is even more challenging and a chaperone or mentor is needed for developing protocols, ethics, statistics - this is usually a team effort. Undertaking research is a privilege as it can fundamentally change practice globally - and results can be seen. Managing clinical work alongside research is what Anne considers to be a vital combination. Anne’s message to anyone wanting to go into Metabolic Dietetics is that you need to be prepared to give more than 9-to-5, but that it could open many doors in unexpected directions. ALEX PINTO: METABOLIC RESEARCH DIETITIAN
Alex doesn’t have any direct patient responsibility, however, he has a great knowledge of patients, as he attends many patient events and helps children get to grips with low protein cooking, as well as collecting data for research projects. He loves children, loves helping them at events, helping them test out products new to them and generally interacting with small people. Alex has networked with dietitians throughout the UK and Europe to find out current practices in less welldocumented metabolic disorders and in PKU, the detail of infant feeding practices. Alex has had six papers published already and has presented poster abstracts and oral presentations at national and international conferences. He thinks the way forward for research in Metabolics is through education and closer links with universities - Alex is now underway with his PhD through the University of Plymouth, although he and his research subjects are both based in Birmingham. Typical day: There isn’t one - a day could involve party planning for one of the many metabolic children’s parties that Alex has helped with; ethics documents preparation; data collection; statistical analysis work, writing and more writing and then practicing those research presentations till they are 100% perfect. RACHEL WILSON, CLINICAL SCIENCE DIETITIAN, VITAFLO
Rachel has worked for Vitaflo for just one year. Rachel first specialised in stroke then moved into Metabolics in 2013, working at UCLH. Rachel has never regretted the move to adult Metabolics - it’s varied, and diet plays a big role in a patient’s life-long management. Now, working in industry, she feels she can use her dietetic skills, but has less of the emotional stress which can come with looking after very ill individuals. Rachel enjoys seeing patients at Vitaflo events and has many projects that are informed by patients and their dietitians. Rachel is working on research projects and educational support with a special interest in Maternal Dietetics. 50
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Significant plus points: Having a wider impact on metabolic patients through supporting metabolic dietitians delivering their clinical service. Health service colleagues are also quite envious of Rachel’s ergonomic desk and she has business cards! CHARLOTTE ELLERTON, SPECIALIST METABOLIC DIETITIAN, CHARLES DENT UNIT, NATIONAL HOSPITAL FOR NEUROLOGY & NEUROSURGERY, LONDON Caseload: Charles Dent Unit sees over 1,000 dietary-treated metabolic patients Charlotte’s focus is on Maternal Dietetics and she is involved in clinical research.
Charlotte works in one of the biggest metabolic centres for adults in the UK and Europe and she is one of the lead dietitians in the unit. Charlotte says that what she does every day is the essence of her interpretation of Dietetics: translating science into food. Her first job was a general Band 5 post supporting adults in a district general hospital before moving into the completely new field of Metabolics. She then completed a paediatric rotation in different specialties which taught her so much, and also helped confirm her love for metabolic work. The role can be emotionally challenging, particularly in the care of individuals with complex conditions who she gets to know very well (along with their families) as they are usually patients ‘for life’ as they are rarely discharged. Sadly, sometimes during pregnancy, the risks to mum and baby can be high, and there are some tough days. The dedication of these women to follow extremely restrictive diets to protect their unborn baby is exceptional and humbling. The highs in Charlotte’s work are being able to help support women with the dietetic aspect of their pregnancies and seeing the joy that the babies bring to families - particularly in conditions not renowned for successful pregnancy outcomes. As you can see, metabolic dietitians are passionate about their work and our caseloads are growing! If you see jobs in Metabolics advertised in the future, please remember these first-hand accounts and know that this is one of the most fascinating and rewarding branches of Clinical Dietetics you could choose. I hope you enjoyed reading about these dietitians. If you want to know more about the work of the BIMDG and NSPKU then go to www.bimdg.org.uk and www.nspku.org
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