When Andy was first diagnosed with cancer I found myself trawling the internet, trying to find good news stories about people who had survived a stage 4 diagnosis.  It was during one of those searches that I found Dr Kate Granger.

Kate is an NHS doctor, she also has terminal cancer.

Being both doctor and patient has enabled Kate to see her profession through different eyes, as carer and cared for.

During a hospital stay in 2013, recovering from post-operative sepsis, Kate was struck by the fact that so many staff looking after her didn't introduce themselves before delivering her care.  As she said, it seemed incredibly wrong that such a basic step in communication was missing.

Kate and her husband Chris decided to start a campaign, to encourage and remind healthcare staff of the importance of introductions in healthcare.  And so the hashtag #hellomynameis was born.

#hellomynameis is about person centered, compassionate care, starting with a basic courtesy, to introduce yourself.

As Daisy's mum I have experienced the best, and the worst, of communication over the years.  From the lovely consultant who was clearly the  same age as me introducing herself by her first name to the consultant who marched into Daisy's room when she was recovering from surgery and started to examen her without even asking her, or us, if it was OK. It's no wonder that Daisy gets stressed when she goes to hospital.

It's bad enough when healthcare professionals don't introduce themselves to me, 11 1/2 years of caring for Daisy have made me older, wiser and tough enough to ask them who they are and what their role is in Daisy's care if it is not offered up the first time we meet, but it's even worse for Daisy, the patient, often reduced down to (as I heard once) "the costello syndrome kid".

When people are ill they are at their most vulnerable, they need to have confidence that the person treating them knows what they are doing, that starts with knowing who they are, what their role is and where they fit into the big picture.  At least Kate Granger understood the hierarchy and complexity of the NHS, she knew the jargon.  When I started this journey I couldn't differentiate an SHO from an SpR, a radiographer from a radiologist - why would I? I was just a lay person thrown into a very specialist world, I just needed to know that the people who were treating my daughter knew what they were doing and had her best interests at heart.

The other thing that I quickly discovered when I was thrown into this world is that you also lose your own identity and it becomes merged with that of your child ; you are "mum", the person they have to go through in order to treat their patient. I know I don't speak for everyone here but personally, I absolutely hate it when healthcare professionals call me "mum".  There are only four people in the world who can legitimately call me mum, I know that because I gave birth to them.  So why do doctors, nurses, people who phone me from the hospital to book appointments assume it's alright to do so?  I am not their mum, I am Daisy's mum, but I am also a person in my own right,   In all these years no-one has ever asked me what I want to be called, in a busy clinic it's easier to call me "mum" - making the assumption of course that I even am Daisy's mum, I could be her Aunt, her carer, her grandmother......

Not once during Andy's treatment did anyone call him Steph's husband.  He was addressed as Mr Nimmo and very quickly he told people he preferred to be known as Andy.  I can imagine that Kate Granger is called by her first name, or Dr Granger, or Mrs Pointon.

I am a crucial part of Daisy's team but as she gets older and has her own views on what she wants, regardless of her learning disability, it's important that she is acknowledged and communicated with.

Daisy and I recently attended one of many outpatient's clinics.  We sat in the waiting room and when her name was called we followed the man who had called it.  I assumed he was one of the doctors, he had no uniform to identify his role or a visible name badge .  We walked behind him, along the corridor,  to a room where it became obvious that he wanted to weigh and measure Daisy.  He had not acknowledged Daisy, introduced himself to me or even worse, her, or explained what was going to happen.  At this point Daisy was very anxious and I explained that I did not want her weighed that day as there was already a recent weight and height in her notes.  I asked him who he was and he said he weighed all the children who came to clinic.  To this day I don't know his name or how he fitted into the big picture for the day but needless to say Daisy was not weighed and we returned to the waiting room.

This man was just doing his job, but his job involves working with children and their parents and carers.  While no doubt he is very good at collecting heights and weights at a very busy clinic there was a fundamental problem with his role, his ability to communicate, both to tell me what he wanted but more importantly to reassure Daisy and explain to her what was going to happen.

I need to trust the people caring for my daughter, in whatever capacity,  and I also need to feel valued as an individual who cares for her day in, day out when she is not in hospital.  This starts with seeing Daisy as an individual and me, her mum, as her advocate and the person tasked with making decisions on Daisy's behalf.   

Kate Granger says it beautifully " Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances"

Of course Kate's personal and clinical experience in healthcare is not in paediatrics (she specialises in care of the elderly), so I am advocating that doctor's treating children need to introduce themselves not just to the parent but also the child. Daisy may have a learning disability and limited speech but she certainly understands what hospitals mean and needs to know that she is surrounded by people she can trust and will help and respect her.

I really believe that with children's care it needs to be taken a step further by checking in with parents and carers on what they want to be called. It was Mahatma Gandhi who said "Be the change you want to see in the world". So if we parents are uncomfortable with being addressed as mum we need to change things and give the healthcare practitioners caring for our child permission to call us by our first names or Mr or Mrs or whatever we feel most comfortable with, even if it is mum.  Can you imagine how powerful it would be at the next outpatients clinic when staff introduced themselves (assuming they have at least mastered this step), we parents responded with something along the lines of  "This is Daisy and my name is Steph, I'm Daisy's mum , please call me Steph"

The #hellomyname is campaign has a range of resources that healthcare providers can use to make sure everyone knows there name, there's nothing stopping parents doing the same. Only one out the the three main hospitals that Daisy visits has fully implemented the #hellomynameis culture, and a culture change it is, the difference is, while we have probably spent the least amount of time at appointments in that particular hospital, Daisy and I have always felt included as part of the team. Every single person we have dealt with there has introduced themselves and wears a big badge (important when you as longsighted as me) with either their first name if they choose or their official name; Dr, Mr, Sister etc. The feel of the place is very different, I can tell that they are not just paying lip service to an initiative from management, they are living it, top down, grassroots up. So very different from the man at the recent clinic in the other hospital who wanted to weigh Daisy without even engaging with her or telling us what was happening.

I'm going to order my own #hellomyname is badge for me and for Daisy so that there is no confusion about who we are and what we like to be called, I'm hoping that by taking the lead in communications it will get staff in the other two hospitals we attend thinking about their interactions with other children they care for and their parents.

If you are a parent of a child with complex needs who hates being referred to as "mum" or "dad" , I challenge you to do the same, take the lead, introduce yourself, introduce your child, wear a name badge, ask what the health practitioner's role is in your child's care, don't let them assume that you know what they are doing and how they fit into the big picture.

Dr Kate Granger has created a fantastic legacy for our NHS, a cultural change through a simple phrase, lets make sure that legacy carries through to every element of interaction we as parents of children with special needs have with the people who are there to help and support us. Let's use #hellomyname is to make sure that care really is child centered.

Kate is currently at a hospice and her days are numbered, she is getting brilliant palliative care and her husband is by her side - the best way we can support her is to make sure that everyone knows about #hellomynameis and makes it part of the culture of caring for people when they are at their most vulnerable. 

 It's a simple thing, it makes a huge difference.

For badges & resources have a look at the official website  http://hellomynameis.org.uk/ - this includes links to Kate's twitter and facebook page together with her fundraising for The Yorkshire Cancer Centre Appeal.

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