Through Our Eyes: A Tribute to Daisy Rose Nimmo

Dedicated to Daisy Rose Nimmo.


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.



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:

  • 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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