Daisy Rose Nimmo 2004 - 2017 @Steph Nimmo Was This in The Plan??? |
The SEN world were shocked and saddened to hear of the passing of Daisy last week. This beautiful and vibrant young daughter of Stephanie Nimmo has changed many lives more than she could ever know.
Steph has been a constant and vital campaigner for change within the learning disability world and healthcare over the years. We all felt we knew Daisy and her family through Steph's powerful blog Was This in the Plan?
Steph wrote "Today our beautiful, feisty, determined girl, Daisy Rose, took her last breath and is out of pain and dancing in the stars with her beloved daddy."
Steph played a large part in the following chapter, written by consultant learning disability nurse Jim Blair, entitled Through our Eyes. This segment, exploring the feelings and role of families when working with a patient who has a learning disability is part of the book Supporting the Physical Needs of People with Learning Disabilities.
Jim felt it was fitting to share the co-written chapter as a tribute to Daisy on a day when another parent contributor Yvonne Newbold is taking over the Twitter account of the NHS and bringing learning disabilities to the fore. Re-produced here with kind permission from Pavilion Publishing.
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Through Our Eyes: What Parents Want for their Children |
Through Our Eyes:
What parents want for their children
from health professionals
Jim Blair Consultant
Nurse Learning Disabilities at Great Ormond Street Hospital; Associate
Professor Learning Disabilities Kingston and St.George’s Universities and
Health Advisor British Institute of Learning Disabilities
Mary Busk Expert by Parental Experience
Hayley
Goleniowska Expert by Parental Experience
Simon Hawtrey-Woore Expert by Parental Experience
Sue Morris Expert by Parental Experience
Yvonne Newbold Expert by Parental Experience
Stephanie Nimmo Expert by Parental Experience
Introduction
Who knows best?
This is a difficult one to answer but it is certainly true that health
professionals as well as those working in social and education settings can
only get care and support right when they involve those who have lived
experience namely people with a learning disability and their families. This
chapter focuses on families, their feelings about health services and what
change they would like to see using their own words and names. It is essential
that all health professionals gain a clear focused sense of what it is like to
experience health services through the eyes of those who use them.
The challenges
and difficulties families face when entering the world of hospitals and health
service settings, these are similar in other service settings, is captured in
the following by Yvonne Newbold, a mother of a child with severe and profound
learning disabilities and complex health needs, in the following piece;
What I would wish for
‘Hospitals will always be a part of our
family life – it goes with the territory when you have a child with complex
needs. Even though I spend several hours, sometimes several days and nights, in
hospital every month, I absolutely dread every minute we're there, and it gets
harder with each passing year.
What one thing would make the whole
experience more bearable? That's easy. I wish that every single hospital
employee could learn how to truly listen.
Some health professionals barely listen
at all. Others appear to listen, but you soon realise that it was only so they
could formulate their reply. Occasionally, we meet someone very special who
really listens, and with their whole selves, so they even hear what's left
unsaid.
They're the ones who make magic happen.
As well as absorbing our words, they gain a tangible sense of what our lives
are really like in a way that parents like me seldom experience. Time stops
still while compassionate kindness soothes suffering. In that moment, something
profound happens; my sick child becomes the only thing that matters.
Your hear and take my concerns
seriously, somehow knowing this is my first adult conversation in days. You
make me feel like an equal rather than someone less. You understand all I say
even though I'm barely talking coherently. You help me make sense of all of my
fears. You acknowledge the essence of who my broken, hurting little boy really
is, barely noticing his disabilities and equipment. You make a holistic assessment
based on quality of life rather than individual symptoms.
When my child doesn't co-operate with
your examination, you ask for and accept my help. I suggest we turn it into a
game, you play along enthusiastically.
You offer me a glimpse of the future when
all health professionals are like you. When we will all pull together on the
same side, working in partnership solely to enhance my child's life.
I can tell by your eyes that you know
the things we haven't talked about. You recognise my exhaustion and notice how
my hair hasn’t seen a comb for a week, but you don’t judge me or make me feel
inadequate. You “get” how my life is. A never-ending merry-go-round of
sleep-deprivation, of coping with double incontinence, of tube-feeds, of
nasal-canulas, of oxygen-saturation monitors, and of the ever-present vomiting
and chest physiotherapy in the middle of the night.
You know how my son’s fragility
terrifies me, frightened that his tenuous grip on life could snap at any
moment. You feel my guilt that I can't stop his pain, and you sense how hard I
work to keep him alive. You know better than to ask me how I’m coping because
you know I'll always say “I'm fine”. You understand that that's better than me
starting to cry and never being able to stop, so we don't go there. We don't
have to because for that moment, you were already there, with us and for us.’
Yvonne Newbold
is the author of ‘The Special Parent’s Handbook’ (2014)
This powerful piece
clearly sets out the tread mill effect that is often felt by families when
accessing health settings. It also offers solutions that all health
professionals in order to get it right need to:
· Take time to be with the person with a
learning disability and their families to turn into their lived experiences
· Pick up on what is and is not said and
not to hurry the interaction
Getting support
and care right is not easy and ensuring that health professionals effectively
engage and interact with families and those who love and know the child/ person
with a learning disability is central to making sure the interaction and
outcomes are helpful, accurate and appropriate. Hollins and Hollins (2005),
both parents of an adult son who has a learning disability, highlight the need,
as did Newbold earlier, to first of all listen to parents and other people who love the
child or young person. It is vital to remember that doctors and nurses frequently
see and get to know a child for a very small number of minutes or hours in any
year. Compare that with the amount of time that family members spend together. Hollins
and Hollins (2005) ask who then are the experts? It cannot be the health
professionals alone. Health professionals see a very small part of the
child/young person for a very brief time, and must strive to create a strong
trusting relationship with families. This requires health professionals to
really adopt what Newbold referred to earlier.
Sometimes
families are considered difficult. A so-called difficult family is one who
doesn't yet trust health professionals, perhaps because they have had bad
experiences with health professionals in the past. It is wise and highly
beneficial to ensuring better outcomes for people with a learning disability if
health professionals invest in building strong partnerships with the persons’
family- the child/young person will be the beneficiary and it’s an investment
not just for this moment but for the future as well.
More than a diagnosis
Another
element that should be central for health professionals is to always be mindful
that there is more to the child/young person than their medical diagnosis.
Human development involves emotional adjustments for every child and every
parent, whether a child is disabled or not. Every individual responds, reacts
and interacts in a unique way to difference. Health professionals will be able
to help with these adjustments by respecting and supporting the person with a
learning disability and families to face any difficulties they are experiencing
(Hollins and Hollins (2005)).
Learning
to Listen
Words
such as respect and empower give some sense of what should be central to the
relationship between healthcare professionals and disabled people. One part of
empowering people is to equip them with the tools to understand what is
happening to them in ‘this place, at this time, with these caregivers’. This
might include information but even more importantly it includes helping them to
share their hopes and their fears in whatever way they can. Books Beyond Words
tell stories about many health and social care experiences and can be a
powerful way of restoring confidence and hope for people who find pictures
easier to understand than words.
In the
beginning, the fight
At the start of life with a child with a learning disability it
can feel like your life is no longer your own. Stephanie Nimmo illustrates this
clearly and explores a way through it when saying
‘….In the
early days I fought against the system, I fought against the fact that suddenly
your life was not your own, that even 18 year old student nurses could sit and
read notes about your child that you were not allowed to look at. Lives
on view for all to see, every emotion, every outburst.
The first
lesson I learnt was that when your child is really complicated and has a really
rare condition then medicine becomes no more than educated guess work.
The doctors don't have all the answers, the ones you respect are the ones
who will admit that they don't know what to do and will work with you to find
out.
The internet
becomes your best friend and your enemy. You spend hours trawling through
case studies, trying to find the answer that will help your child.
Believe me, as time goes by you don't go to the internet anymore, it does
not have all the answers, your child is unique and while the internet will give
you pointers there are no guarantees that treatments that work for others will
work for your child.
You do not
have to be alone. It took me a long time to realise that. And by talking
and opening up to other parents who have walked your path you can gain the
benefit of their experience, what they did that worked, what they wished they
had done.
I have
learned time and time again that it is important to have a good relationship
with the doctors treating your child. You don't have to like them, but
you have to work with them. I have learned over the years that doctors really
do care, even the ones that appear not to, some of them don't have the best
bedside manner, some are very arrogant, yes they can go home and switch off but
they all have your child's best interests at heart and sometimes their views
will clash with yours.
This is why
taking another person along to meetings, involving a support group, an
intermediary, the PALs service is so important, because at the time in your
life when you are dealing with the most extreme of emotions and are so
terrified that you may lose your child, you also have to be calm, rational and
efficient’
Health
professionals in partnership with the child / young person with a learning
disability and their families can get it right.
Partnerships between parents and health professionals
should be open
Sue, whose son,
Darrell, is 18 years old with a great sense of humour, Down Syndrome, severe
learning disabilities, physical disability and a variety of complex health and
behavioural issues suggests,
‘As a parent
I would like to see health professionals who see their role as joint
partnership with parent/carer. To be open when a parent suggests what
they think is wrong with their child and looking into those concerns.
Being all people are different and react differently so do people with LD
which is why we need people in our NHS who can adapt to all our children, one
may need space and another may need a lot of interaction. Understand we
may have already had the biggest struggle just getting to the appointment so go
easy on us. I have already witnessed over the years how a little banter
goes a long way and welcome this with open arms, sometimes we need to laugh to
escape the harsh reality.’
When health professionals get it right
The following
is
Hayley Goleniowska‘s experience
of being in hospital and the care and support provided by a learning disability
nurse illustrates what happens when health professionals get care right. Hayley
is the founder of Downs Side Up and has authored many publications including Fink
Cards which are discussed later.
‘Our youngest daughter is eight and has
Down’s syndrome, and it was only through a chance meeting at a conference that
I met and learned about the role of learning disability nurses.
I immediately made the false assumption
that these professionals were on standby to help adults in need of support, and
it was only when our daughter was admitted for a routine tonsil and adenoid
operation some months later, that I began to wonder if they might be able to
help younger patients and their families too.
The team were only too pleased to help and
I received a call at home to talk me through my concerns ahead of our
daughter’s surgery. I was able to explain my worries about the little patient’s
needle and numbing cream phobia and lack of understanding about why she might
have to wait long periods of time without eating on the day of her operation.
The nurse was able to liaise with the anaesthetist to arrange skipping the
pre-med and also advised surgical teams that our daughter should go to theatre
as early as possible on the day to avoid uncomfortable situations that she
would not be able to deal with mentally.
Not only were these practical matters
addressed with ease, but I found someone who understood my fears and worries as
a Mum, who realised that even minor surgery conjures up memories of more
serious surgery past, that however many times our little ones battle on, it
doesn’t get any easier for parents.
Even my emotional tears on the phone were
accepted and eased. My fears were taken seriously and eased considerably, just
by having someone with the right experience to lean on. A member of the team
made sure to visit us while the surgery was taking place too and we chatted
that awful time away.
Learning disability nurses play an
invaluable role in hospitals. They remove fear and they make sure procedures
and stays go as smoothly as possible. They translate between the families and
the consultants, surgeons and managers as well as being a vital mouthpiece to
communicate the needs of those with learning disabilities.’
Usual rules don’t apply
Mary
Busk and her husband have three children one of whom has severe learning
disability, autism, behaviours that challenge, mobility difficulties and other
health needs. Mary sets out why usual rules do not apply and that health
professionals necessarily have to think differently.
‘Our disabled son, Alex, does not
look disabled at first glance and although he is now 15 years old,
developmentally he is 3 and his language and communication younger than
that. He also weighs 15 stone and is
nearly 5 feet 5 inches.
Health professionals need to
understand children and young people like our son better and what high quality
integrated services should look like for them.
Normal rules about diet, expectations of cooperation and so on do not
apply. Their needs as a whole person have to be at the centre of planning and
understanding. This has to include how they can access health services,
including the need for a highly preventative approach given the range of
physical and other health challenges they face and will face in the future,
including from obesity.
We first came to the
children’s hospital many years ago to
seek help from the Feeding Team because a combination of health issues and
autism meant Alex had developed extreme problems eating that were affecting him
and our family greatly. The Team were very understanding and supportive and
have worked with us to support Alex to widen his range of foods and support
weight management. We feel very supported as a family because they care for all
the family and they understand Alex very well.
We have recently met the Learning
Disability Nurse lead, to resolve practical problems about Alex getting a blood
test. As he has got older, bigger and stronger we are struggling more than ever
to get support and understanding in local services for these basic needs. We do
not have these problems for our other two non disabled children. Working with the
children’s hospital has helped our family
as there is immediate understanding of the issues, we do not have to beg for
help or explain Alex’s needs because they are understood. This has helped us to have less stress and
worry and we can feel more confident about ensuring that basic health needs for
Alex are addressed now and in the future.‘
Being confident
and being less stressed are core central components of life for everyone but
when you first start the journey into being a parent of a child with a learning
disability it card be very hard. Parents can help each other and also guide
health professionals as to how they too can have a positive impact when talking
to new parents such as those of children with Down Syndrome.
Talking about Down's Syndrome - Conversations
for New Parents
This set of
Fink Cards Hayley Goleniowska (2015) are a powerful way to initiate
conversations that maybe difficult to start. ‘Congratulations
on the birth of your new baby,’ is the emphatic welcome message from Hayley
to other parents of newly diagnosed babies with Down’s syndrome. Sadly all too
often these are not the words that health professionals utter when giving news
to parents that their child has Down’s syndrome. The reality is it is only an
extra chromosome, so keep calm and carry on, yet society still conjures up
images, visions and a future of little or no hope, worth or purpose for those
individuals with Down’s syndrome. How very wrong that is.
How
health professionals give news is vital,and all too often the news that a baby
has Down’s syndrome is not given in a positive supportive fact-based,
humanitarian, focused manner. It is why the more health professionals know about
Down’s syndrome the better. But also why a learning disability nurse, as
numerous parents advocate, must be more involved in giving this news since they
are best placed to give a fuller reality-based account of what Down’s syndrome
means as a child grows up and evolves into an adult than other professionals
who are not solely qualified to work with people with learning disabilities.
Having Down’s syndrome does not define who Hayley’s
daughter Natty is just in the same way that not having Down’s syndrome does not
define her other daughter Mia. Bob’s, Hayley’s husband and the father of both
children, matter of fact approach that all would be fine is not what is
experienced or said by other parents.
These cards along with the excellent web site www.downssideup.com set up by Hayley to enable new parents to see that life will go on, provides vital tips, stories, inspiration and love from her family to others. The cards are separated out in to sections:
These cards along with the excellent web site www.downssideup.com set up by Hayley to enable new parents to see that life will go on, provides vital tips, stories, inspiration and love from her family to others. The cards are separated out in to sections:
- Conversations for New Parents – containing tips about how to use the cards,
their purpose and very personal supportive messages from Hayley from her
own lived experiences.
- Your Baby- questions for parents to consider such as: Can you describe
your baby in three words? Does Down’s
syndrome define your baby? Have you kept your baby’s first outfit? These questions along with
others I imagine will be extremely helpful for new parents to make sense
of the world they have entered which is for many not the one they contemplated.
It will also enable health and social care professionals to gain a glimmer
of light into what it is that is vital for parents of babies with Down’s
syndrome since it was created by a parent for other parents.
- Diagnosis and Health – with questions such as Do other members of
the family feel the same as you about your baby’s diagnosis? and What
were your first thoughts when you were told your baby has Down’s syndrome?
These cards get to the point quickly and in a focused manner. The fact
that they have been created by one parent for other parents makes them
singularly more powerful and essential for new parents as well as health
professionals.
- Support - questions such as Who
do you talk to about your fears and worries? and Have you been told
about any support groups? illustrate how essential it is for new
parents as well as health professionals to consider why sharing and
support are so pivotal to the early (as well as all) stages of having a
child with Down’s syndrome.
- Life and Relationships – Have you discovered any new friends since
your baby was born? Do people sometimes say things that hurt your
feelings? How has your relationship with your partner changed since the
birth of your baby? These and other such searching questions get
straight to the core of the issues facing new parents and these cards
provide a though provoking but neutral way of creating a space for
individual and familial thoughts.
These sets of cards are an extremely refreshing way
for professionals to ensure that they get it right when meeting with and
interacting with parents who have a child with Down’s syndrome. These cards
acknowledge that each parent and family member will feel differently when they
hear the diagnosis of Down’s syndrome for the first time. Each person’s
emotions, thoughts, visions for the future and feelings upon hearing this news
will be unique to them.
These Fink cards should be given
to all health professionals during their training to assist them in enabling
attitudinal change and positive practices to flourish that cherish each child,
young person and adult.
Key Points
Every person is
an individual and unique. Each interaction and contact has to count. Health
professionals do need to think differently and act creatively together with the
person with a learning disability and their families. To get care right health professionals need
to take;
- Time to be with the person with a learning disability and their families to tune into their lived experiences
- Whole person approach not just the diagnosis
- Tapping into how the person with a learning disability communicates, interacts and usually is
- Listen to parents and other people who love the child, young person or adult
- Invest time and energy not just for the moment but for the future as well
- Pick up on what is and is not said and not to hurry the interaction
In order to
ensure care is adjusted to meet a person with learning disabilities’ specific
needs a TEACH approach, first developed in Hertfordshire by the Community
Learning Disability Team, is required:
T Time – take time to work with the
person
E Environment
– alter the environment e.g. quieter areas, reduce lighting and waiting
A Attitude – have a positive solution
orientated focus
C Communication – find out the best
way to communicate with the person, their families, carers, supporters and also
communicate this to colleagues
H Help – what help does the person,
family, carers and supporters need and how can you meet these needs
We can never
know what it is like to see through another person’s eyes completely but health
professionals must seek to gain a clear picture of how it is for people with a
learning disability, their families, carers and supporters. The most effective change and help is often created by
those with lived experience. Too frequently health and social care
professionals choose not to appreciate what wealth of knowledge, understanding
and expertise these parents have. It is only through really engaging parents,
families and people with learning disabilities in the education of health and
social care professionals, service planning, design and evaluation will we
truly experience services that are effective, responsive, well led, safe and
caring.
References
Goleniowska.H,
(2015) Talking about Down's Syndrome - Conversations for
New Parents by Fink Cards
Hollins,
S.and Hollins, M. (2005) You and your child: making sense of learning
disabilities. London: Karnac Books.
Newbold.Y,
(2014) The Special Parent’s Handbook. Poole: Amity Books by CMP (UK)
Websites
www.bild.org.uk - British
Institute of Learning Disabilities
www.booksbeyondwords.co.uk
- Books Beyond Words
www.disabilitymatters.org.uk
- Disability Matters- educational learning materials for health, social and
education professionals
www.downsideup.com – gently
changing perceptions of Down’s Syndrome from within hearts
www.easyhealth.org.uk - Easy
Health – Over 250 free accessible health
information and materials
www.intellectualdisability.info
– Intellectual Disability - learning
about the health of people with intellectual (learning ) disabilities
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