Why doctors MUST listen to patients and parent carers

You might have noticed that, here at SNJ's virtual HQ, we have a missing columnist.

Renata Blower is a mother of three, one of whom, Dominic, has an undiagnosed rare condition and has spent frequent spells in hospital, accompanied by Renata. This means she has many more important things to do at the moment than write for us, but she knows we're ready and waiting for her when she can.

These hospital stays have often been traumatic for both Renata and seven year old Dominic, a boy whose courage is humbling. But yesterday, she managed a brave post on her own Just Bring the Chocolate blog and it is so important that we're adding an edited version here as her first, unscheduled column.

Renata wrote it in honour of NHS Change Day and why pledges to change for the better – particularly the doctor-patient relationship, actually have to be followed by action.

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Renata writes: I would just like to make a point of stating, for the record, that I am in no way talking in this post about the wonderful people that have pledged to make a positive change on NHS Change Day. You guys are progressive and have the best interests of your patients at heart. You get a hearty slap on the back and a Mars bar from me for being just the sort of people we need.

However, if you've made an NHS Change Day pledge yet still think you know my child better than I do, then I’m afraid you’re being a dick and need to give me back my Mars bar and get over yourself.

Dear Dr Google, I have this little problem…

Have you ever sat in front of a doctor nodding along to their sage advice, while biting your lip to stop yourself blurting out anything that might cause the doctor to question your faithfulness?

They're right to worry though, because most of us are guilty of straying, and it’s time to stop keeping our late night, furtive finger strokes a secret and proudly declare that yes, we are unrepentant two-timers, and no, we’re not going to stop.

After all who could resist the 0.0003 of a second answers and the stamina to stay up with me all night long? It's time to stop treating Dr Google like a dirty little secret and tell the medical professionals that it’s better for everyone if we’re not exclusive anymore.

We have access to information like never before. Yet the way the majority of doctors and patients interact is often still more like the relationships of 50 years ago when information, and thus the power, was only in the hands of the doctor.

Is this because the authoritarian style of doctoring has been proven to be in the patients’ best interests? Far from it, so why is this 'relationship' side of the NHS so neglected?

I believe it is because patients and carers have been rendered largely voiceless by the very system that is meant to protect them. Despite nods towards empowering patients with the NHS reforms and the formation of patient groups, patients and their families are far from empowered by the current system.

Until doctors start seeing their patients (and parents of patients for paediatricians) as intelligent, reasoning beings with a valuable contribution to make, their opinion holds little value. It is part of the intrinsic culture of the NHS and fault lies on both sides.

Of course there is the always option to seek another opinion, but the negative associations with that should not be underestimated. Complaining or simply not complying often goes hand in hand with receiving poorer health care despite assurances to the contrary. This is a risk that many people, understandably, are too afraid to take, especially when they are feeling the vulnerability of being unwell, or seeing their child unwell.

But equally, patients undoubtedly contribute to the perception that their role is a passive one and they should be grateful and uncomplaining.

Let me give you an example of why I think this is. If you were to walk into a sandwich shop and order a cheese sandwich, you would expect the shop owner to give you what you had asked for, and might even feel brave enough to speak up if, instead, they decided to give you a ham sandwich because they feel it is better for you and as they are a sandwich expert, you really should listen to them.

If someone was giving away free sandwiches, and you were really hungry, you’d be far less likely to speak up when the sandwich man ignored your wishes. Why? Because you are just grateful to be getting the sandwich in the first place.

That is how I see Britain’s relationship with the NHS. We are so entrenched in the idea that it is 'free' health care and that we should be grateful even to be seeing a doctor that challenging a decision they have made is fraught with guilty feelings and the sense that we deserve to be treated less favourably as a result.

But NHS health care isn’t free – we just pay for it through National Insurance. Unlike in the US, we do not face insurance premiums or mounting medical bills when we are unwell, but I wonder if simply receiving a bill for the treatment we have received would make us less passive about making sure the treatment we got was the best thing for us.

Doctors don't trust Dr Google's credentials

There is no doubt that the NHS is a good thing and in many ways, it is unrecognisable from its early years. Medical techniques, research and treatment are always improving and evolving to reflect our advancing knowledge.

The one area that doesn’t seem to want to keep up is the doctor-patient relationship, which remains fundamentally the same. I believe it’s largely because the patient’s voice is still unvalued, and not just by the doctors, but by the patients themselves.

The internet has handed the patient access to information in an instant. Patients can communicate to thousands of other patients all over the world. They can learn about treatments being tried and exchange experiences globally. This is an immensely rich and valuable source of information sharing, driven by motivated and astute individuals.

And yet, in my experience, this resource is still regarded by many medical professionals as a dangerous place for patients to dabble in case they don’t have the intellectual athleticism to review objectively the information with which they are presented.

But I would be willing to bet that most patients who nod compliantly when told not to consult Dr Google go home and do precisely that, because the internet offers the ability to make informed choices about their own treatment.

It should be acknowledged as a far safer way to practise medicine for an informed patient to be able to ask a doctor to justify their medical decisions – and this would, arguably, lead to far more compliance from patients.

Too often, patients who are articulate about their condition and knowledgeable about treatment options, still struggle to be heard as an expert part of the medical team.

Parents who are advocating for their children are in an even worse position, because the power dynamic is slightly different. Rather than patients speaking for themself, parents are making decisions on their child’s behalf.

The parent carer is usually seen by health professionals as just offering their 'best guess’ at how the child is feeling or how the treatment is going. This view means the validity of the (unpaid) parent carers' information or viewpoint is questioned and it is therefore easier to ignore.

For parents of children with complex and/or chronic conditions, the sheer regularity of their intervention and interaction with their child’s condition puts them in a unique position to understand its impact from a social and emotional point of view. The time a child spends in front of medical professionals is mercifully brief and, usually, unrepresentative of the child at home.

A parent knows their child with such intricacy that they can normally spot signs that they are unwell before thermometers rise or the vomit hits the floor. Their knowledge is broad and instinctive and is crucial in order for the treating team to be certain that they have not missed anything.

I have heard many times that consulting the child’s carer is fraught with difficulty and dictated by language barriers, intelligence levels and willingness to be involved. But this should not be used as an excuse to dismiss the value of the knowledge that they hold, and there can be no excuse for not trying.

Parent Carers possess vital information about their child

In any case, the ability of patients and parents to absorb complex medical information should not be underestimated. If you have ever stood in the parents’ kitchen in Great Ormond Street Hospital and heard parents a few years down the line talk about their child’s condition, you would think you had walked into a medical conference, if it wasn't for the slippers and the general disdain for doctors’ communication skills.

What these parents have is motivation. They do not think they are better than the doctors, they are not full of their own self importance, they are simply heavily invested in making the right choices, especially when it’s their child’s health at stake, and so they use the resources available to them to ensure that they are making informed choices.

This is far from being the unhealthy involvement that so many health professionals see it as; it is about parents taking the circumstances that have been handed to them and doing their best to be the parent that their child needs.

When you choose to become a paediatrician you must accept that the family are part of the deal. Many parents whose dalliance with the NHS is brief and fraught with worry are happy to have a doctor who takes the lead and to adopt a passive role in their child’s medical care.

No doubt these are the easiest of parents and I could understand a doctor wishing that all parents were like this. But in all probability, at some point in their career, quite possibly as a junior doctor, they will find themselves sitting opposite a parent who bears the battle scars of having fought for years to protect her child.

That gnarled and gritty parent’s experience will have been dichotomous. On one hand, when at home, she will have liaised between all the teams that look after her child, having acquired sufficient knowledge to have an intelligent discussion about the best options for her child with each different specialism; she will have been expected singlehandedly to do the job of a nurse, physiotherapist, occupational therapist, dietician, psychologist and play specialist. On the other hand, that same parent will have been stuck in a hospital room, hoping that the next doctor who walks in will actually listen to what she is trying to say, and vowing to kill the next person who refers to her as ‘mum’.

When you have a child who has a rare, complex or undiagnosed condition, you are often fighting blind with a rubber sword. These children don’t follow medical rulebooks, they don’t make life easy and, if there’s a complication that they can get, however rare, they’re likely to get it. If you attempt to treat that child without listening to the advice of their parent you are putting that child at risk. Let me say that one more time, so it’s absolutely clear. If you attempt to treat that child without listening to the advice of the parent, you are putting that child at risk (and you’re being a dick).

These parents don’t want to do your job for you, they want to ensure that their children get the best care that they can. They want to work with you, and there are a lot of bright, motivated, patients and families out there doing something that doctors are so poor at – they are communicating.

Over the course of Dominic’s life I have spent years in hospital. I have met hundreds of doctors and seen the NHS from a perspective that most healthcare professionals only experience long after they have retired.

I am well educated, smart and happy to take on Goliath if it’s something I believe in. I have both thanked doctors heartily for their expert care and watched with horror as mistakes are made that have put my son’s life at risk. Every single one of these times it’s because doctors thought they did not need my input.

While each doctor is usually more than competent when they are looking through their own little microscope of specialism, if they do not look at the whole child, mistakes may well be made.

Having the parent there can help to prevent these mistakes because the parent brings context to the discussion. They know the child better than anyone and they know the child’s history, the outcome of most tests, the discussions in all the outpatient clinics, how the child coped with the last procedure and how it will affect them at home.

I have thought long and hard about why parent carers have to battle so hard to have their view respected, as this is not just a problem for the NHS and I think it boils down to one simple thing.

Parents don’t get paid for being their child’s full time carer.

You got the position by default. There was no selection process or interview, and your advice isn’t special enough for someone actually to want to pay for it, unlike all the professionals you are surrounded by. The parent carer’s input is seen to have little value as you cannot place a value on it. It is invaluable, if you will, which, unfortunately, rather than making it precious, instead leads it to be regarded with suspicion and disdain.

Nothing highlights this better than the inability of anyone employed by the NHS to refer to a parent by name. From the second I step into hospital I am stripped of any persona other than being an extension of my son.

I can count on one hand the number of healthcare professionals who have actually asked me my name, even including the ones that I have seen for months at a time. I have never forgotten the people who did pause to ask and acknowledged that I was a human being.

There is a very serious side to this lack of respect for parents and lack of trust in their ability to make reasoned and intelligent contributions to their or their child’s care. With technological advances meaning that more complex patients can be cared for at home and the expectations of parents rising, the medical community has to keep up.

If you really want to make a pledge where a small change will make a huge difference, why not pledge to be a doctor who improves the doctor-patient relationship by respecting the knowledge that the patient or the parent of a patient brings to the team, and welcomes and encourages them to use the resources available to them to inform them about their condition. It is fundamentally about respecting your patient, and the person advocating for them if there is one.

My name is Renata, not Mum

Patients need to trust your judgement and, even at the age of seven, Dominic is acutely aware when doctors do not ask him what he thinks of their plan and gets really upset. You see, trust comes from the belief that someone is acting in your best interests, and when you don’t trust and respect my expertise as a parent, it makes it very hard to trust your ability to make informed decisions about my son’s care.

So let me introduce myself, my name is Renata, and the only people who should ever refer to me as ‘mum’ are my three children. I have seven and a half years of experience in looking after a complex undiagnosed child, and I have several years’ experience of living in children’s hospitals. I am intelligent enough to be left alone with Google and am capable of disseminating the information that I uncover.

I have a wealth of knowledge learned over the years and am a valuable member of the team that looks after my son. I am the only person that knows the whole picture as I have sat through every outpatient appointment, ward round, physio session, test and procedure and I can fill in the blanks around the (woefully incomplete and in some cases inaccurate) hospital notes.

I have been victimised and bullied by health professionals whose desire to flex their egos directly got in the way of the safety of my child. I stood up to them and watched them tear my credibility to pieces. They could do this because I was a nameless parent, the one referred to as ‘mother’ on the paperwork from the meeting we went to when everyone else was referred to by name.

So if you really want to change the NHS, here is your reason to pledge… My son, the patient, the small 7 year old boy who lies in his hospital bed and waits for a doctor to listen. A small boy who cries and waits for what seems like an eternity before turning to me and saying,

“I might as well be invisible.”

 Find the full article here 

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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