Sarah Durnan
Specialist Paediatric Dietitian
(Home Enteral Feeding)
Nottinghamshire Roosevelt
Travelling Scholar 2014
Exploring the use of blended diet
via gastrostomy tube.
“Do something. If it works, do more of it. If it doesn't, do something else. ” – Franklin. D. Roosevelt
Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
CONTENTS
1. Acknowledgements
2. Introduction
2.1 About Me
2.2 About my Project
3. Itinerary
4. The Scholarship
4.1 ‘Food for Tubies’
4.2 Hospital Visits
4.3 Non-Profit Organisations
4.4 Commercial HEF Companies
4.5 Feeding Clinics
4.6 Conferences
4.7 Public Health Dietetics
5 Summary of Findings and Reflection
6. Personal experience
1. Acknowledgements
I would like to say thank you to everyone who made this scholarship possible. Most importantly the
League of Friends of QMC who sponsored my Scholarship place. The generous families who offered
to host me during my travels. I hope I can return the favour in the future.My own family, friendsand
HEF colleagues for keeping in touch and ensuring I was never homesick. To Ellen Burns, Daljit
Athwal and Anne Cowley for their advice and support throughout.To previous NUH scholars;Sandy
Gill,Dan Walsh, Laura Hailes and Becky Williamson for their experience and guidance during the
planning stage.Finally fellow 2014 Scholars Verity Bingham, Laura Marano, Ed Raisen and Matthew
Chapman, it’s been a pleasure sharing this experience with you.
2. Introduction
2.1 About Me
I grew up in Southwell, Nottinghamshire and attended Southwell Minster School. I returned to
Nottinghamshire for work in January 2012 having lived in Newcastle, London, Edinburgh and Carlisle.
In May 2014 I bought a house in Mapperley and I intend to stay in Nottinghamshire in the long term.
I am a Specialist Paediatric Dietitian working in Home Enteral Feeding (HEF) at Nottingham University
Hospitals NHS Trust (NUH). I work with children who are fed via gastrostomy, jejunostomy or
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
nasogastric tubes in the community. I visit patients in their own homes, at school and in respite care.
My role involves communicating complex dietary information in an understandable way. I use
motivating and counselling skills with parents, carers and often extended family members to
encourage continued compliance with dietary treatment. I work as part of a team of paediatric
Dietitians and with a multi-disciplinary team of health, social care and education professionals. My
caseload includes children and young people ranging from fifteen months to nineteen years of age.
The majority of my patients have complex care needs due to conditions such as Cerebral Palsy or
neurodegenerative syndromes. Careful, frequent monitoring is required to ensure the child has
sufficient nutrients to grow and be as healthy as possible whilst minimising any associated symptoms
such as reflux.
I love to travel, to learn about other cultures and to meet new people. While at University I travelled
with friends through South America from Ecuador to Brazil and in 2007 I travelled independently for
eight months around Australasia and South East Asia. In 2013 I was chosen as the first Dietitian to
take part in Rotary Internationals’ Group Study Exchange programme to Nepal. The Nottinghamshire
Roosevelt Travelling Scholarship offered the opportunity to combine a love of travelling and
advancing research within my specialist field of work.
2.2 About my Project
The majority of our patients use commercially pre-packaged, nutritionally complete, sterile feed.
However, there is a growing movement towards using home cooked food which is then blended and
administered via the gastrostomy tube. Some parents feel this de-medicalises the process of feeding.
Some families who have tried using blended food have observed benefits such as decreased reflux,
decreased abdominal bloating and increased volume tolerance. The British Dietetic Association
(BDA) released a policy statement in October 2013 outlining the perceived risks of using blended diet.
These risks include micronutrient deficiencies, increased risk of contamination and risk of tube
blockage. However in conclusion the statements summarised that if a patient’s carers still wish to use
a blended diet,through a gastrostomy tube, knowing the risks then they should be supported fully by
their Dietitian.
The topic was further discussed at the British Association of Parenteral and Enteral Nutrition (BAPEN)
annual conference, in November 2013. There is no robust evidence supporting its use and it would be
unethical to develop a long term randomised control trial. There is little reliable tried and tested
practical guidance in the UK to use to support patients. The conclusion, at BAPEN was more
qualitative evidence should be collected from Dietitians who have supported patient’s carers to do
this. The majority of resources supporting blended diets come from the USA where blended diet is
thought to be more common.
I was keen to investigate this topic further and learn from the experiences of American professionals
who have been supporting blended diet, to understand the difficulties and find practical advice for my
patients to help our team support them in the longer term.
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
At the end of April 2014 after two rounds of interviews I found out that my application to become a
Roosevelt Scholar had been successful. It was difficult planning the trip whilst continuing in my full
time job and the planning and preparation took over my evenings and weekends. I spent a lot of time
emailing potential contacts and speaking to them late at night via Skype to reassure them of my
reasons for visiting and to discuss my itinerary. My plan changed at least three times between April
and my departure on 16thSeptember 2014.
3. Itinerary
My project took me all over the USA. I visited fifteenstates traversing the country twice. This involved
a lot of travel, staying in each place no more than ten days at a time and living out of a suitcase. I took
twelve internal flights, a total of 6772 miles negotiating my way through fifteen different airports. I
hired four cars (1729 miles); caught one bus (161 miles); took five trains(672 miles). A total of 9334
miles travelled within America.
A. Portland, Oregon
L. Savannah, Georgia
B. Seattle, Washington
M. Montgomery, Alabama
C. Boston, Massachusetts
N. Denver, Colorado
D. Albany, New York
O. Las Vegas, Nevada
E. New York City
P. Grand Canyon, Arizona
F. Philadelphia, Pennsylvania
Q. San Diego, California
G. Washington D.C.
R. Tucson, Arizona
H. Charlottesville, Virginia
S. Fort Worth, Texas
I.
Asheville, North Carolina
T. Austin, Texas
J.
Atlanta, Georgia
U. San Antonio, Texas
K. Charleston, North Carolina
V. Orlando, Florida
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
4. The Scholarship
4.1 ‘Food for Tubies’
My first stop was Portland, Oregon where I stayed for a week with a family using blended diet. Bonnie
is ten years old and has been gastrostomy fed for nine years. Bev, Bonnie’s Mum founded the online
support group ‘Food for Tubies’. This website was frequently recommended by US Dietitians
throughout my scholarship as a reliable resource for their patients. Living with the family for a week
gave me understanding of the day to day practicalities of using blended diet. Bev does
demonstrations to healthcare professionals and showed me how she blends for Bonnie. She also
showed me before and after pictures of children who she has supported to start blended diet. She
says parents report not only a reduction in reflux and improved bowel habit but also improved skin
tone and healthy rate of weight gain. Some children seem to gain excess weight on commercial
formula due to low energy requirements.
4.2 Hospital Visits
I arranged nine hospitals visits in total. In America there is a ranking system for hospitals.I spent time
at two that claim to be the top paediatric hospitals, Boston Children’s Hospital and Children’s Hospital
of Philadelphia. At both Dietitians reported an increase in demand for blended diet. Each Hospital has
working parties looking at local policies for the use of blended diet. Children’s Hospital of Philadelphia
plans to hold a workshop on the topicat their conference. The main purpose of this is to find out what
is happening across the country and promote discussion. I discovered that the use of blended diet is
not as common in the US as perceived in the UK. Its use is far from common practice; however
Dietitians do support families to blend if the family chooses to.
My most valuable hospital visit was Seattle Children’s Hospital. The Dietitians reported a large
increase in the number of families wanting to use blended diet in recent years. They have developed
a policy for the use of blended diet in hospital and given talks and guidance to other children’s
hospitals across the country. A variety of patients in different medical specialities are using blended
diet. Catering staff are making blended diet on site for use by families during hospital admissions.The
Dietitians told me that it has taken a long time to get to that point. The policies required work with
different specialities such as catering, nursing and infection control. There are practical difficultiese.g.
storage of blends and maintenance of a bank of blenders. They have developed different recipes to
suit children with high or low energy requirements. Many families still prefer to give their child blends
made at home and brought in, fridges are provided at ward level for storage of home blended formula.
In Seattle I was also able to go on home visits with a Community Dietitian. We visited a family starting
blended diet. It was really useful to see how the Dietitian discussed blended diet with the Mum and
reassuring to see similarities in our practice in general.
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
On other visits I met Dietitians who are supporting one or two patients to use blended diet. Like the
UK in smaller hospitals a minority of patients the use of blended diet. I was told at the Mayo Clinic in
Minnesota half of the HEF patients are on blended diet. This is having subsequent effect, Mayo Clinic
treatspatients from all over the US. The patients are then referred back to local hospitals for ongoing
monitoring and Dietitians are having to adapt their practice.
It was particularly interesting at University of Virginia hospital to learn about an adult patient who
switched from commercial feed to blended diet. The patient reported that the commercial formula had
‘sat heavy’ in his stomach making him feel bloated whereas the blended food felt more ‘normal’.
Feedback from adult patient is useful, not all paediatric patients can easily tell us how they are feeling.
4.3 Non-Profit Organisations
There are a number of non-profit (charitable) organisations associated with enteral feeding in the US.
In Albany, upstate New York, I visited the Oley Foundation, a national, independent organisation.
Oley was set up by Lyn Howard, MD, and her patient Clarence “Oley” Oldenburg, it helps people
dependent upon feeding by tube or by IV. They organise newsletters, conferences and networking for
patients, assisting with practical issuesfrom tube blockage to travel. Oley redistribute formula from
people who have surplus supplies to patients cannot afford commercial formula.The formula is not
covered by all insurance companies and there are still a large proportion of people in the US who are
uninsured.I met three families at Oley who are using homemade blended diet. For one the reason
was an intolerance of commercial formula which caused the child to retch and vomit. For another
family formula was not covered on their insurance plan. The third family were using blended diet
because the child had multiple allergies;they found it easier avoid allergens using blended diet. I also
metan adult patient who had tried blended diet but found the process too time consuming; he said it
was difficult to make the blend energy dense and had reverted back to using formula.
4.4 Commercial HEF Companies
In the US HEF is often managed by private for profit pharmacy companies. Aformer colleague works
for one such company and I was able to shadow her at work in Denver, Colorado. The office covers a
huge geographical area; all states west of Colorado. There are other companies that provide enteral
feeding, but this is one of the largest. She coversthe whole of SouthernCalifornia. On this scale it's not
possible for the Dietitian to review the patients as frequently as we do in Nottingham. They are reliant
on other members of the team picking up on problems when the patient calls in to reorder stock. It is
the patient’s responsibility to ensure they have enough supplies. All dietetic consultations are done
over the phone. I had the opportunity to sit with each team member to see the patient journey through
from start to finish. A lot of the work seems to be insurance related. There are hundreds of insurance
providers and each one has different levels of coveragein their policies. If insurers do not cover
enteral feed the patient has to pay for it themselves ‘out of pocket’. The Dietetic Assistant spends a lot
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
of her time collecting evidence from inpatient health providers to justify if the patient qualifies for
Medicare; the criteria are very strict. Ialso visited the home infusions in San Diego. It’s anon-profit
competitoron a much smaller scale, covering only the San Diego area. This model was similar to the
NUH service. There are two part time Dietitians and a Dietetic technician for 75 patients. They visit
patients in their own homes and can be more flexible with follow up frequency. The dietitian explained
that insurance providers can change their contract yearly, meaning the patient has to change enteral
feeding company, dietitian and potentially formula too. The Dietitians at both companies have noticed
an increase in enquires from paediatric and adult patients about using blended diet. As the companies
make profit from using formula they do not recommend or advise on the use of homemade blended
diet.
4.5 Feeding Clinics
During my travels Dietitians invited me to see feeding clinics. The focus of these clinics is to wean the
child from artificial feeding onto an oral diet. This is only possible for children who are not at risk of
aspiration. Children who are ventilated in the early weeks of life can become oral averse and even
with a safe swallow have feeding difficulties in later childhood. For children who do not have a safe
swallow, oral food can easily go into their lungs and block the airway. The majority of the clinics were
comprised, in addition to the Dietitian: a Speech and LanguagePathologist, Occupational Therapist,
Social Worker and Nurse, andin some cases a Psychologist and Paediatrician. At NUH there is no
multi-disciplinary feeding clinic and children are sometimes referred to a private company which uses
a
behavioural
approach.
The
programmes
that
I
visited
were
using
a
relationship
approach,encouraging the tube fed child to take part in family meal times and learn eating skills from
parents and siblings. Some of the clinics such as the one in Children’s Hospital Alabama were brand
new. This seems to be a developing area in the US.
I visited Mealtime Connections in Tucson, Arizona, a therapy centre for children with special feeding
challenges. Marsha Dunn Klein is an Occupational Therapist. She believes that blended diet plays a
key role. Marsha reports seeing dramatic improvement in reflux and bowel habit as a result of using
blended diet- even in small volumes alongside commercial formula. Marsha is the author of
‘Homemade Blended Formula Handbook’, the only text book aimed at professionals on the provision
of blended food via gastrostomy tubes. This was co-authored by Dietitians Ellen Duperret and Jude
Trautlein..Jude has her own business advising on blended diet. She showed me her diet analysis
programme and plans which she gives to families which allow both nutritional adequacy and variety
too. A desire for variety is often a reason families want to start blended diet.With the support of an
experienced paediatric Dietitian it seems to be possible for a child on full blended diet to meet their
nutritional requirements for macro and micronutrients.
4.6 Conferences
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
I attended three conferences during my scholarship. The first was a‘Focus on Transition from non-oral
to oral feeding’ run by the Professional Child Development Associates (PCDA)at Shriners Childrens’
Hospital in Portland, Oregon.PCDA is a non-profit agency which provides therapeutic, relationship
based multidisciplinary services to children with special needs and their families. Patty Novak is the
Dietitian working within that team and is published on the topic of blended diet. Patty spoke at length
about the dietetic assessment and monitoring plans which seem to be similar to the UK. She gave an
overview of the different formula available in the US - which was useful.Patty stated that in her
experience blended diet is better tolerated.She says a greater range of foods can be given and there
are also significant social-emotional benefits. The blends include for example lycopenes which are not
found in commercial formula. She recommended that families starting a blended diet should be
advised on good food safety practices and a healthy balanced diet should be promoted. Patty
reported seeing few of the BDA’s perceived risks in her blend fed clients
In Atlanta I attended theFood and Nutrition Conference and Expo (FNCE) hosted by the American
Academy of Nutrition and Dietetics. The conference was huge, attended by 8,000 Dietitians from all
over America, the perfect networking opportunity. Educational sessions started early in the morning
and lasted until late into the evening. The opening session included a video link greeting from
Michelle Obama. It was helpful to see the range of nutritional products available which are quite
different from the products we use in the UK. I met the developers of two pre-packaged real food
blends at the expo. ‘Real Food Blends’ was developed by Julie Bombacino, aMother who was
blending food for her gastrostomy fed son. She saw a gap in the market and developed her blends
into ‘ready blends’ in pouches to be used by families when pushed for time or when going away on
holiday. ‘Liquid Hope’ seems a very different product designed for adult patients; the company
however reports an increase in requests from parents for gastrostomy fed children.
At the end of the scholarship Verity and I attended the Institute for Healthcare Improvement (IHI) 26th
Annual conference at Orlando World Centre Marriott. This was funded by the NUH ‘Better for
You’programme.The IHI was founded in 1991 and focuses on quality improvement in healthcare
worldwide. The IHI has ambitious plans for the future such as the 100 million healthier lives mission.
There were novel sessions such as a trip to Central Florida Zoo to learn aboutimproving patient
safety. The session challenged participants to think outside the healthcare environment and learn
from industry. The conference highlighted that healthcare systems are moving from a ‘what the matter
with you’ to a ‘what matters to you’ approach. Healthcare is becoming less prescriptive and more
patient centred.
4.7 Public Health Dietetics
In Austin, Texas Ilearnt about trends in American food consumption from a public health Dietitian. She
explained that there is a growing interest in organic non-genetically modified foods and a movement
in general from highly processed foods such as high fructose corn syrup, which is the main
component of many commercial formulas.
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
5.Summary of Findings and Reflections
The American insurance based healthcare system is very different to the NHS. I learnt that whilst
patients would not be refused care because they are uninsured they may be left in debt or even made
bankrupt due to healthcare bills.I was asked about 'socialised healthcare' on multiple occasions; some
people in America seem to have the perception that social health care systems have extremely long
waiting lists and that aftercare is poor. However, I believe that we offer an equal or even superior
service to HEF patients in Nottingham to that offered by hospitals and companies in the US. Patients
have regular follow up and support regardless of socio-economic status. I also learnt that social and
educational support for children with complex medical needs is minimal in some states and much for
example respite care has to be privately funded. I met many Americans who are jealous of our NHS
system. I left America feeling proud to work for the NHS where healthcare is free for all at point of
entry.
During the scholarship I was able to visit multiple hospitals, community services, companies and nonprofit organisations providing care for HEF patients. I discovered too that blended diet is not as
common in the US as perceived by UK Dietitians.The vast majority of patients use commercial
formula. However like the UK, US Dietitians are witnessing a significant increase in families wanting
to try homemade blends.I met twelve American families who are using homemade blended diet via
gastrostomy tube. I learnt that there are several reasons why a family may choose to go down this
route, the most common are;

Intolerance to commercial formula, which seems to cause retching and reflux in some children

A desire to normalise mealtimes

Financial reasons
Each family is using blended diet in a way unique to them. The term blended diet incorporates a
spectrum of methods. Some add only a little blended food to commercial formula; other parents are
using blended diet to meet their child’s full nutritionals needs.
I met healthcare professionals who support and encourage the use of blended diet including Dietitians
who have made it their lives work. They have demonstrated that it is possible to meet a child’s
nutritional requirements using blended diet. None of the professionals and families using blended diet
reported an increase in tube blockage or upset stomachs. I hadn’t realised before I went to America
that blended diet could be used as an aid the wean children from artificial feeding.
Families starting blended diet need to be highly motivated and committed, the process can be initially
time consuming. Many children thrive on commercial formulas. These sterile ready-to-hang products
are safer for patients with jejunostomies, those who are immunocompromised and those for whom a
blocked feeding tube would require a surgical procedure.
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
In Nottingham we have developed a risk assessment tool and are supporting sevenfamilies to use
blended diet. These families found out about blended diet through their own research. The BDA
suggests there is not enough scientific evidence for Dietitians torecommend blended diet however it
seems unfortunate that many patients come across blended diet on an internet search especially as
some sites are less than reliable. I think we should be open and honest about blended diet,we know it
exists; we know that some patients do extremely well on homemade blends when they were
struggling on commercial formula. There is little evidence that the perceived risks are occurring in this
population but because families try blended diet themselves at home without the guidance of a
Dietitian we do not know it there are a subset of families who have tried homemade blends and
decided that it is not suitable for them.Like the UK, in the US there are difficulties in giving blended
diet at school or in respite care. Some of the families I met had been campaigning for this to be
possible. Nurses, carers and teachers can feel uncomfortable administering blends made in the home
environment and plunging the blend into the child’s stomach where a commercial formula would drip
slowly in via gravity.
Since returning from America I have been asked to write an article for American Academy of Dietetics
Paediatric newsletter. I am also writing an article for the BDA magazine, Dietetics Today. I’m hoping
to set up an international interest group for healthcare professionals to share their experiences. I will
be arranging a session on paediatric HEF at the NUH ‘Engage, Enthuse, Empower’ research festival
which co-insides with national Dietetics week. I will be working with the other paediatric Dietitians on
policies for the provision of blended diet in the hospital setting. In April I will be starting a PhD with
Coventry Universityalongside NUH scoping the use of blended diet in the UK.
6.Personal Experiences and Reflection
The scholarship was challenging. Staying in family homes I felt constantly ‘on show’ as an
ambassador for Nottinghamshire and NUH. I packed a suitcase for every possible weather condition
and re-packed it every 4-5days. The scholarship tested both my resilience and flexibility. Sometimes
plans were changed or cancelled at short notice and alternative visits arranged. Days were long and a
lot of time was spent travelling. I gave a presentations at short notice and I was treated like a celebrity
on some other visits posing for photos with staff.
On evenings and weekendsI tried to explore and see as much of America as possible. I made use of
free walking tours in cities and made several friends and contacts on those tours.
Other personal highlights included:

Spotting Orca in Seattle.

Climbing to the top of the Rockefeller building for a stunning view over New York City.

Hiking along the rim of the Grand Canyon, taking in the sheer size and the changing colours
as the sun set.

Watching a rodeo with cowboys in Fort Worth, Texas.

Improving my skiing skills in Denver, Colorado.
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Sarah Durnan, Specialist Paediatric Dietitian (Home Enteral Feeding)
Nottinghamshire Roosevelt Travelling Scholar 2014
In my opinion the opportunity to stay with American families was the best part of the scholarship. It
allowed me to immerse myself in the American culture. In total I stayed in nine family homes. People
who I contacted through their research kindly offered to put me up and made me feel at home. I also
used five airbnbs. My hosts went out of their way to pick me up at airports or train stations and
enjoyed showing me local sights and tourist attractions. They took time to explain US politics,
healthcare systems and the complexities of American Football. I was able to sample home cooked
regional foods, including a full Thanksgiving dinner with my wonderful hosts in Arizona. In Alabama
we had a camp fire and toasted marshmallows. In Denver I went trick or treating with my hosts very
cute one year old dressed up as Batman.
I was able to learn about the life and work of Franklin D. Roosevelt as I travelled through America. I
visited the Roosevelt Monument in Washington D.C and the Little White House in Warm Springs,
Georgia. The name frequently cropped up in other places too,for example along the Blue Ridge
Parkway between Virginia and Atlanta or at the Grand Canyon where his Civilian Conservation Corps
built infrastructure in a new deal, depression era project devised by FDR.
Every challenge was worth it. The Roosevelt Scholarship is an extraordinary opportunity unique to
Nottinghamshire. I am looking forward to being part of the Alumni Group and mentoring future
scholars to ensure the scholarship continues long into the future.
“The more you circulate on your own travels, the better citizen you become, not only of your own
country but the world as a whole” – Franklin D. Roosevelt
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