When I wrote “The Special Parent’s Handbook” I included a lot about the difficulties my family had faced with their encounters with education, health and social care professionals over the years. I’ve written extensively on this subject, I’ve given talks and I’ve facilitated workshops on this very topic.

I am passionate about trying to enable significant improvement to develop in the thinking, working practices and organisational culture of our Public Sector Services. I can see how much easier life could become for the next generation of parents bringing up disabled children, and how so much more could be achieved at little or no cost. In fact, if some of these recommendations could be implemented, fairly substantial financial savings could be made in all areas of Public Sector spending. Best of all, it would massively improve outcomes for all of the vulnerable children concerned.

Then last week it happened again. I received a copy of a letter from a heath-care professional regarding my son Toby, and addressed to several other members of Toby’s multidisciplinary team. The letter used the word “emotional” to describe me, and in the context, it was seemingly used as a device to discredit my opinion, to disregard my judgement and to silence my voice as being irrational.

The letter seeks support from his colleagues on the team to sanction a healthcare decision regarding Toby which I disagree with. I quote from his letter:

I have discussed with Mrs Newbold and she was not happy with the plan. The topic was reported to be emotional for her”……. “As Mr Newbold does not have the capacity to consent, if you feel this is indicated and Mrs Newbold should object, I wonder whether the expertise of a Consultant may be beneficial”.

I read the letter a second time, and I felt a profound sadness that it is still acceptable for health and social care professionals to disparage caring, educated and informed parents in such a manner. It is also gender-specific; I would be very surprised if a father would ever be described in such a way. They certainly would never describe fellow members of their teams in such terms either, even though many of them must be mothers themselves.

Then I thought, well maybe it’s just me being silly and over-sensitive. Many of you know that I have a Facebook Page dedicated to The Special Parent’s Handbook, which has fast become a supportive resource for special parents everywhere. So I asked them, posting the following:

Oh dear. I’ve had a copy of a letter from one professional to another talking about a decision one of them wants to take that I don’t agree with, and for very good reasons which I have explained at length. The letter dismisses me entirely by stating that I am “emotional”. The word “Emotional” is a generic term and might mean angry, sad, happy, frightened or a dozen other things, yet the context here is very clear; it is being used as a derogatory term to discredit me and to imply I am irrational. As a good friend has pointed out, aren’t mothers supposed to be emotional, and isn’t that a great thing? What’s the opposite of “an emotional mother”? An unfeeling dreadful one? Comments please!

The Special Parent's Handbook FB Page

 

Well, the comments came in thick and fast, 108 of them in total, over the next couple of days. Indignant, outraged, hurt, angry and crushed people, mostly mothers, shared their experiences and validated my feelings entirely. Here are just a very small selection of their comments:

At least you’re not being called neurotic, I’ve been called that”

 “I hate it when you get dismissed in such a insulting way. I would be phoning and requesting to speak to said ‘professional’ and ask why he uses such useless unhelpful adjectives! Disgraceful”.

I’m all for standing up and telling the so-called ‘professionals’ how to behave. It’s like they have all the brains but no social skills. I had one pediatrician ask me (after seeing her about 5 times) if my son can eat finger food. He’s got complex disabilities and is only tolerating small amounts of pureed food, which is in his notes. It was if I’d just met her that minute.”

As I said there are some true professionals out there but plenty of rubbish ones. Getting a second opinion is almost impossible. Our complaints are not finger pointing just our experiences.”

One or two professionals are good but the majority have proved a waste of time in my experience. My grandson is deaf and has autism. His SENCO leader thinks she knows what his needs and emotions are above what his mother knows, a joke she has never even met the child. They treat parents like idiots.”

 “My daughter asks constantly ‘why don’t they listen’. The number of comments on your page shows THEY don’t and just how many frustrated families there are out there.”

Some ‘professionals’ think that they are always right, can’t see others point of view and should we deign to challenge them, then they label us awkward or in this case emotional.”

Isn’t the opposite of emotional – cold? Like a refrigerator mother? Don’t get me started!”

“Perhaps you should reply using passive aggressive terms about their decision making and bedside manner. ‘Whilst I appreciate the input from the dispassionate perspective of a medical professional, with only a passing knowledge of my son as an individual, …..”

This has happened to me too….in fact you would not believe the way some so called professionals have spoken to me. They spend 5 minutes in a room with you and your child and then write a black and white report and distribute it to all involved…if you dispute what they have put its tough because it never goes away. And they all stick together and believe each other over whatever the parents have to say. Parents who live with children day in day out and want what’s best for them. The attitude of many of these people stinks and they assume all parents are idiots.”

Most professionals don’t have feelings they are so cold and don’t care. I would ask them to explain why they called you emotional.”

This is appalling. I have done veterinary work in the past and one of the first things i was taught is to listen to the owners – they know far more about their pet and what is normal for that animal. The same is true of people – those who love and live with patients, particularly those who cannot speak out for themselves, know far more about that person and their condition. Its such a shame as real conversation would be so much more productive.”

Grrrrrr. The sheer arrogance. Have none of these so called professionals heard of emotional intelligence? How dare he, and so many in his business, take a term that describes the very essence of being a caring, loving human being and recast it as a derogatory term; a chauvinistic, defamatory judgement that gives him the right to dismiss without consideration all of your intelligent, measured, well-informed, experience-based person-centred arguments as irrelevant. I’ve got a word for him (I assume it’s a him), and it’s FIRED.”

There is nothing professional about dismissing a parents opinions and beliefs – it’s highly unprofessional behaviour. Someone has to think on an emotional level about what is right for the person involved, and not just on a practical or financial level.”

In my experience emotional is always code for hysterical and/or unreasonable. I hate it when they use it in reports. I have to console myself with the fact that, however qualified they are, they have no idea about my life and the things I have to deal with. I have 2 type 1 diabetic children one of which has moderate learning difficulties and auditory processing disorder and a third child who is severely mentally disabled. I will damn well be emotional if I want to be. What do they know?”

Good God “emotional” A huge word meaning so many different things as you pointed out. Insane I’m sure they would call me. We are loving parents of children who can’t speak up for themselves. We are mum, nurse on call 24/7, how else do they expect us to be when no one listens? They sit there and judge purely because they have degrees and loads of letters after there names, meaning they must know more than us, right? Ummm no. They haven’t walked in our shoes, they don’t live or exist like most of us do they? They clock in and clock out, then go home to a lovely bottle of wine and a nice hot bath and they can relax. They don’t have to worry 24/7 as it’s not their job to, but only once every so many months when they see you for all of 5/10 minutes at a clinic appointment, then on to the next emotional parent and you’re forgotten about till next appointment. I would love to see one of them spend 24 hours or even a week in our shoes and then they can have an opinion. The thing is, we’ve not learnt from books. We’ve learnt from life, our life and our children’s life. We have been self-taught by our children not by university or books or lectures. I’m 100 percent certain that if these fools took time to really listen, and really take on board our concerns for our children instead of checking their books as they do, and most children don’t really fit in with what they have learnt anyhow. Seriously, in an ideal world, we should be the ones who are expert in our child’s needs. not the so-called experts. You carry on being emotional, it’s bloody normal. You are human at least you’re not neglecting your child or abusing them. Emotional is good. It means you care and want what is right for your child. It’s time they opened there ears and started to listen instead of pointing fingers and making us feel like we are in the wrong for caring and for being our children’s voice.”

There’s so much I’d like to say to you on this, but it makes me so angry that I become a little hysterical. Deep breath my friend and give them what for”

A mother without feelings is emotionally cold, so please be happy you are in the first group.”

Me and Toby in the mirror being "emotional"
Me and Toby in the mirror being “emotional”

I must state that not all professionals are as judgemental as it seems is the case with the one who wrote this letter. Many are kind, dedicated, warm and understanding and truly listen and do their best to help. Luckily for us, the members of Toby’s team to whom this letter is addressed are all people for whom I have only the greatest of respect, and who have each been consistently fabulous in all of their dealings with both Toby and myself. However, I am concerned that getting a letter like that may make them question their opinion of me. After all, mud sticks.

It’s also very clear that the person who wrote this letter is not alone in making parents in my situation feel devalued, judged and irrelevant. The Facebook comments above are filled with a sense of profound hurt, anger, unfairness and powerlessness. There is a pervading sense of frustration being caused by being repeatedly crushed by abuses of power. Parents of disabled children seem to be a very easy target, and it seems that we have all had some very difficult and negative encounters with people being paid to offer a supportive and professional level of care to our children and our families.  Reading the comments, it comes across loud and clear that parents are not being listened to, our concerns are not being heard and validated, and our children are therefore, in many cases, not getting the correct level of intervention and help that they need.

This attitude isn’t just hurting the children and their parents. It’s also hurting all the thousands of professionals who are doing their absolute best on behalf of families like ours,  because it shakes the trust and the goodwill that may otherwise have been built up. I know that when I next meet with each of the individual professionals who received a copy of this letter which aims to disparage me, I will be a tiny bit more wary than I would otherwise have been, and more than a little embarrassed too. That’s how this invidious unprofessionalism works in practice.

Mother-bashing is never kind or dignified, and always much less so when the mother in question is a “special parent”, and she is being negatively judged for caring as much as she can.

Some health professionals just don’t seem to listen. This letter certainly does not reflect the many conversations I have had with this gentleman, nor the many reasons why I am unable to agree to this proposal regarding Toby’s well-being. I have courteously and politely explained my reservations in full to him on a number of occasions, and each time I have been able to back up each one of these reasons with evidence from Toby’s medical history.

Listening is crucial to every element of care. If I could just choose one fundamental difference to make in the approach of every single person working within our Public Sector Service, it would be that they are given the skills to listen, not just in order to formulate a reply, but to enable them to truly understand exactly what is being said. 

As I said in “The Special Parent’s Handbook”, these people are Public Servants, and we are the public. We deserve a much better level of service. If only Toby could talk, I’m sure he would agree. 

Toby Newbold
Toby Newbold

 

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How not to do Partnership-Working

11 thoughts on “How not to do Partnership-Working

  • October 13, 2014 at 10:02 am
    Permalink

    Without emotion what are we as parents? We are not robots and we care passionately about our children. What’s more, we must be considered as lead professionals. Excellent post Yvonne.
    Hayley

    Reply
    • October 14, 2014 at 1:00 am
      Permalink

      Thank you Hayley. Maybe that’s why they undermine and attempt to intimidate us, because deep down they know that we are our child’s lead professional, and they feel threatened? Now that’s a lovely thought! Take care of yourself and hope you and the girls have a fab week xx

      Reply
  • October 14, 2014 at 12:37 pm
    Permalink

    I have often wanted to say to a number of professionals that I will accept their offer of meaningless ‘support’ for things I have no need of support with (and often offered in place of outcome-based interventions) if they will accept they require ‘listening training’ or ‘partnership-working-training’.

    Reply
    • October 14, 2014 at 1:15 pm
      Permalink

      Bethlyn, I love it! If you ever decide to tell them, please let me come too because I so want to see their faces.

      Reply
  • October 15, 2014 at 6:42 am
    Permalink

    My son was in NICU for 10 weeks, he was really sick at day 5 and we were asked to make critical care decisions. I was really calm. The consultant thought I was abnormal and should be emotional. I got referred for a psychiatric evaluation as I wasn’t emotional enough. I was a new mum, I had a 1lb 7oz baby in an incubator with whom I hadn’t had a chance to form a relationship yet, I couldn’t really afford to be emotional.

    Then as time went on and my son grew I got criticised for being too emotional and not wanting to let go. You just can’t win.

    Some consultants do really understand the parent’s journey but too many see parents as obstacles not partners. I know some doctors get into neonates and paeds as they think children will be easier, but they forget that children are actually even more complicated as more often than not they need their parents, not only for care and love, but as their advocates.

    We mustn’t give up and we must be prepared to advocate, educate and challenge.

    Reply
    • October 16, 2014 at 4:31 pm
      Permalink

      Kylie, thank you for sharing your experiences – I’m appalled that a doctor put you through all that when all you were doing was your very best at holding it all together as a young, frightened mother. And that’s a great choice of word you use – obstacle. The vast majority of us are bending over backwards to work with the team, yet they regard us as obstacles, crazy. I think it’s often to do with their own insecurities, and not us at all, but while they leave the room with their dignity intact, too many of us are crawling away feeling crushed. How’s your little chap doing now? All the very best to both of you xx

      Reply
  • October 16, 2014 at 11:19 pm
    Permalink

    “I have discussed the options with Mrs Newbold and she disagrees with my initial plan. As you know, Mr N. does not have capacity to consent. His mother’s thoughts are very important in working out his best interests, but I remain convinced that my plan is the best way forward: I can’t think of a better one.

    In my opinion, it would help Mrs N. and I to know whether you also feel this option is indicated, or not. If so, perhaps we should seek a second opinion from a consultant to help us weigh up the pros and cons of the proposed treatment, and to consider any possible alternatives. I attach Mrs N.’s concerns, and the reasons for my view.”

    (How this could have gone, if the professional could respectfully agree to disagree)

    Reply
    • October 17, 2014 at 1:04 am
      Permalink

      Thank you for this – I think your draft letter would have been much more palatable, and it should be a template of how these differences of opinion ought to be played out in similar circumstances. Certainly, a letter along the lines of yours would have made me feel much more reassured that whatever happens will be in my son’s best interests, rather than one opinion taking precedence simply because this person is willing to “shout louder” while they effectively attempt to silence differing vewpoints. The upshot of receiving the letter I did receive is that it’s left me feeling very vulnerable, frightened beyond words for what decisions may happen regarding Toby, and distrustful, not just of the author of the letter, but also the recipients. How can making me feel like that possibly be in Toby’s best interests!

      Reply
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