Dr Sat, Building for the Future

Dr Sat, Building for the Future

In a series of up-close-and-personal interviews we get to look behind the scenes of
Rainbows Children’s Hospice. As we interview employees and volunteers, we learn
more about their work, what makes them tick and why the ‘Building for the Future’
project is vital to help them further their work with the life limited children and young
people of the East Midlands.
In our first interview we speak at length with Dr Satbir (Sat) Singh Jassal, Medical
Director of Rainbows Children’s Hospice.
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Dr Sat, as he is affectionately known at Rainbows, is a busy man. After our hour he is
straight off to Coventry before visiting his practice in Loughborough, Leicestershire
where he is a full time GP with, as you’d expect, a very busy practice. Modest to the
core, when I ask him how he copes with two more than full time jobs, he merely smiles.
“I have a great team and a great support network,” he says. “And that includes my wife,
of course.”
In fact it was his wife who first told Dr Sat all about Rainbows. “My wife came to one of
the evening meetings that Rainbows were holding with the community prior to its
opening. One of the Trustees was talking about what the Hospice needed and when my
wife came home that night she said, ‘do you know, I’ve found the perfect thing for you’.
At the time I was looking for something a bit more. Something to complement my work
as a GP and my wife told me about the fact that there was going to be this new
Children’s Hospice opening up in Loughborough. I have always had an interest in
Paediatrics and in Palliative care.”
Palliative care, explains Dr Sat, is basically the term used to describe any form of
medical care or treatment that concentrates on reducing the severity of disease
symptoms, rather than striving to halt, delay, or reverse the progression of the disease
itself, or to provide a cure. With Palliative care, the goal is to prevent and relieve
suffering and to improve the quality of life for, in the case of Rainbows, children suffering
from serious, complex and life limiting illness.

After hearing about the planned Hospice Dr Sat got in touch and went to meet them. “I
went along and said that I was interested and they said ‘fine, you’ve got the job’.”
That modesty again. When I protest and say that surely there must have been more to
it than that, Dr Sat is adamant, “That was it. There wasn’t anything more. It was only
after I’d been appointed that I discovered that we were going to be only the sixth
Children’s Hospice to open in the country. It was all very new and very cutting edge; it
was an incredibly exciting time to be involved, but of course, by the time I got involved
just six months before the Hospice opened its doors, all of the hard work had been
done.”
That was 16 years ago. Now Dr Sat is part of a team of four Doctors and a host of
specialist nurses and therapists plus specialists in diverse fields such as play and
music. I ask him why he has stayed for so long. Without a pause Dr Sat replies, “Well,
it’s because we’ve always been pioneers here. Although other Hospices have opened
and run using different ways of working, we’ve always used best practice and the best
information around whilst trying to keep our own identity. That’s worked well. In fact we
are now at the point where other Hospices around mainland Europe specifically are
asking us how we work and practice. I was in Sweden in November 2008 giving a talk
on how to set up a Children’s Hospice and discussing the different models used
previously. People from across mainland Europe contact us here at Rainbows to talk
about how our model of care works.”
During the course of our interview there are, it becomes clear, several different ways of
running a Children’s Hospices and at Rainbows they use a very specific model which is
now beginning to be very highly thought of indeed. Dr Sat is at pains to stress that the
way Rainbows works is not unique rather it works and works very well for them and for
others who have used it.
“The way we run Rainbows is very much as a nurse led unit with medical support. It’s
an ideal system to provide the vital holistic care that actually the children and their
parents want. Think about what happens if you or I are admitted into a hospital. That’s
a medical model with nursing support; almost the exact opposite to how we work here.
At Rainbows it’s a different way of working and a different way of thinking.
I’m also a firm believer in never being too proud to ask for help, opinion and advice. I’ll
happily contact colleagues and experts at other centres for their opinion and advice. I’m
happy to contact people all around the country and ask, and indeed I’ve spoken to
people around the world before now because I am not the font of all knowledge. What I
do have is the ability to ask other people. One thing you learn at Rainbows is that the
more you know the more you realise how little you know. It sounds daft but actually we
all ask each other, we all work together. We have the ability here at Rainbows to allow
the children we have here in the East Midlands to access the very best advice and
opinion from all across the UK and the world as necessary.”
I was keen to explore more about what Dr Sat meant about the staff at Rainbows being
pioneers. He considers his answer before replying, “We’re pioneering because of what
we do and how we do it. We have a team of four doctors here, all of whom are GPs
and each of whom has a different skill mix. The one other common thing they share is
their communication skills. I have said for a long time that I can teach anyone symptom
management, but I can’t teach them how to talk to the parents or the children who we
work with here, because you either have that as an art of you don’t.
With our central core of doctors, with their skill mix and their ability to communicate, plus
working with the nurses as we do, what happens is that we provide the expert medical
input and the nurses provide the experienced nursing care and the gut feeling
necessary when treating these children. Many of the children at Rainbows are
incredibly difficult to assess and you have to use your gut feeling here. There’s a lot of
instinctive work done at Rainbows and over the years we’ve developed a speciality in
symptom management. We now have a Symptom Manual which was written and
developed here at Rainbows and which we use, and which is now widely used across
the globe including Australia, Canada, the USA, all of Europe and more recently into
Africa. This manual is now also available online including the website of the UK based
Association of Children’s Hospices and the website of the Canadian Palliative Care
Association.”
Colleagues later tell me that Dr Sat was instrumental in creating the Symptom Manual.
Indeed he wrote the original version. When I catch up with him later he smiles and
says, “Yes originally I wrote it but now what I do is get experts in each field to write
different chapters. It’s all about best practice and sharing that best practice so that the
children and their parents benefit – wherever they live. When we spoke earlier and I
was talking about being pioneers at Rainbows I was very much thinking of the
pioneering ways we have developed of looking after the kids, of running the Hospice –
and that’s where best practice comes in – best practice in terms of how our nurses work
too because medicine is only a very small component of what’s involved here.”
Dr Sat is now asked to lecture, speak and input into all sorts of different projects around
the country. This year alone he has written a textbook on symptom management for the
Oxford University Press, a chapter for a textbook being published in Ireland and also
two chapters for a textbook based on Palliative care in Africa. Dr Sat is involved in the
setting of exams and in aspects of exam marking in relation to the Paediatric Palliative
Care Diploma.

I’m not sure what answer I’ll get when I ask Dr Sat why the Rainbows ‘Building for the
Future’ project is so important. He looks at me very carefully before answering.
“Currently, if you have a child who has a life limiting condition you are looked after by
Paediatricians in the community. Then you’ll go up to the hospital to see hospital
specialists. You will see a Specialist in let’s say gastroenterology, a specialist in
respiratory medicine, a specialist in Neurology. Actually they know only their own fields.
They are experts in that field but often they struggle when they cross the boundaries of
their speciality with another colleague’s. The benefit of having General Practitioners
looking after your life limited child is that we are not bound by any boundaries. We have
knowledge and skills in each of these fields, but because we have knowledge of
symptom control what we’re finding now is that more and more of the Paediatricians are
asking us for our opinion. We now get consultants from Derby, from Leicester, from
Kettering sending children to us saying ‘we can’t work out what’s wrong with this child,
can you help please?’ The first thing we do is read their notes then bring the kids to
Rainbows and do a complete assessment of that child.
In order to do that, we need to have the space and the facilities at Rainbows. I see the
child. I’ll bring them in. I’ll do the assessments. I’ll change their medications, but then I
send them home. Now, the problem I have is that we are an in-patient unit, but those
children – well, you may try a new treatment, but it might not work so then you try
something else – it’s an ongoing process.
The other thing to remember is that all the children we look after have a degenerative
process as part of their life limiting illness, so even if you’re successful with your initial
treatment you’re ultimately going to fail – it’s the nature of the beast. So now I’m stuck
because I have nowhere to see these children in the current Rainbows building. I don’t
even have a room I can sit down in to talk to the parents. Currently I have to find a
space. I talk to them in corridors, in the parents lounge – but then we have to ask other
parents to give us privacy and that means them leaving the very facility which is there
for them to use. It’s very unsatisfactory for me and it’s not the way you communicate
effectively with families.
When the ‘Building for the Future’ project is completed we will have capacity, capability
and the facilities to look after outpatients. We will be able to call the children in much
more regularly, review them, do an assessment here, change their treatments and
provide an on-going service. Ever since I started work at Rainbows the Board have
been clear in their focus and determination for Rainbows to become a Centre of
Excellence. We will only ever achieve that by providing outpatient care and we’ll only
achieve that via the ‘Building for the Future’ project. The community want it, the
Hospice wants it, the parents want it, and the children – well, in short, they need it.

When the ‘Building for the Future’ project is completed, we will get a couple of rooms
where I will be able to see the children, where I will be able to examine the children and
where I will be able to talk to their parents comfortably. We will be able to make the
changes necessary to the children’s treatments and medication. We will be able to call
in specialists and those specialists will be able to work with the child and their parents in
privacy. I will be able to ask my nurses to have a look and give me their opinion. We
will have our therapists working with the children and thereby we will work out a unified
holistic approach to the care of each child, and we will then be able to arrange to review
that child again in the future – and all of this in an environment where we can
communicate effectively with them.”
Dr Sat sits back and looks at me, “You’ve got to think about it from the parent’s point of
view. We are presented with almost impossible scenarios and my team and I have to
find a solution. There are countless stories I could tell you. I think it’s important to
emphasise that this isn’t my need or my teams need. We don’t care whether our
surroundings are posh or not. What’s important to remember is that actually these
children have no other recourse. There is nowhere else to go and if you want to go to
these high territory centres then, yes, you can go to London and to Great Ormond
Street, or Cardiff which also has an excellent centre, or Alder Hey who have good
specialists too. But we live in the East Midlands. Where do our kids go? Where do
their parents go? How far are you going to transport these highly delicate children who
can barely breathe? Movement causes them pain. It’s very difficult for them to come
here let alone trudging off goodness knows where. I also think that sometimes if you go
to a big unit you lose that personal approach too.”
It’s clear from our conversation that Dr Sat has vision and a fierce determination to
ensure that the children and their parents are offered the very best of care. His work
has been recognised by the Royal College of Paediatrics and Child Health where he
has been made a Fellow of the College. In medical circles this is a huge honour
particularly when he has been honoured by a Collage other than his own (as a GP Dr
Sat belongs to the College of General Practitioners). Of the honour Dr Sat says, “It’s
recognition of the work that we have all done here at Rainbows.”
I ask Dr Sat how he will feel when the ‘Building for the Future’ project is completed. “I
imagine that what it will feel like it is the end of one level of the journey. We had a vision
for Rainbows. That vision was to provide excellence of care for the children who had
none or very poor care, and to take those children up to the level where we would be
World Class, and I think we would be at that stage with the new build. We would be
able to say that we are now World Class.”

With £700,000 still left to raise in order to complete the ‘Building for the Future’ project I
am keen to know what Dr Sat makes of the current economic climate and whether it has
impacted their plans. He says, “I know – at Rainbows we all know – that times are
tough. It’s difficult to decide who to help and who to say no too. Nelson Mandela best
expressed it when he said, ‘There can be no keener revelation of a society’s soul than
the way in which it treats its children’. These children, our Rainbows children, are in
one sense the weakest children we have in our community. They are also the strongest
we have because they are fighters. It’s testimony to the generosity of people, of our
community in the East Midlands, that they want the best for our children.”
Before Dr Sat dashes off, I was keen to know how he knew whether his and the team at
Rainbows work really did make a difference. “I think the work done here at Rainbows,
and the work we are still capable of doing given the right facilities, makes a massive
difference, but it is difficult to put it into words.” Dr Sat considers, “The only way you can
explain it is to look at the children’s parents and say, ‘did it make a difference to you, to
your child?’ If you talk to half a dozen kids that we’ve looked after recently and asked
them, ‘Was it helpful coming to the Hospice? If it wasn’t here, what would you have
done?’ – That’s when, maybe, you think ‘I’ll put that tenner in the kitty’.
With that he gets up, shakes my hand and says that if I need anything else, to give him
a call. As he walks out of the door I think of the children and the parents and I wonder if
I have a tenner in my wallet.
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