The parent room conversation I wish I could have had with Ashya's mum

December will mark 10 years of me riding the "parent of a medically complex child" roller coaster, I have seen a lot of things, been through a lot and I guess I can sometimes find myself in the position of sharing my experience and thoughts with other parents.

Often the best conversations I have had have been in the parent's rooms of children's wards, late at night when you try and have a few moments over a cup of catering tea, flicking through gossip magazines without really taking them in, your mind preoccupied and mulling over the day's discussions with the medical team.

I can imagine Ashya King's mum, sitting in the parent's room at Southampton Hospital, I know how she would be feeling - surviving on adrenaline and coffee, exhausted beyond the point of exhaustion, worried, stressed, trying to keep all the plates spinning - staying at her son's bedside while being a mum for her children back home.  Her husband spending hours on the internet, trying to come up with the information they need, the breakthrough so that they can have their little boy back home and well again.  Banging her head against a brick wall following yet another frustrating conversation with the doctors caring for her son - why are they not doing anything?  why are they not helping us?

You feel so alone, it's you against the world, fighting for your child, being worn down by the system, the powers that be, the doctors - they don't know you, they don't know your child, they can go home at night and sleep, you live with this 24 hours a day, day in, day out, and the glimmer of hope, the light on the horizon, their bureaucratic tones are blocking it out...

I wish I had been in that parent's room, I wish I could have taken her hands and looked her in the eyes and tell her, I understand, I have walked your path....

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.

All these things I would have told Ashya's mum.

And she probably would have said that they had found out about proton therapy, this glimmer of hope, but the doctor's had closed them down, saying he was not a candidate, that although it was available on the NHS it was not available for his cancer.

And I would have said, you have to keep trying.  I have learnt that doctors have differing opinions, that they don't always agree.  You can get a second opinion, you have to ask for one, it's not a legal right but doctors should make that referral.  Find another paediatric oncologist in the UK who has referred a child for proton therapy, ask to be referred to them.

Put everything in writing, make copious notes.

And then I would have told her of the importance of trying to find a mediator, someone who can liaise on your behalf and help you navigate the quagmire of NHS bureaucracy.  You need these doctors, you may not agree with them, you may hate them with a passion, but you need them because without their letter of referral you cannot see another doctor or go to the Czech republic for an assessment for Proton Therapy treatment.

This is how the system works, the centre itself has said that they need the necessary medical documentation before they can agree on the appropriateness of the treatment. This is their reputation on the line so if your doctors are sending you to another colleague somewhere else in the UK or the rest of the world they have to be convinced that it will be beneficial to your child.

A mediator can help take the emotion out of this hugely, emotionally charged situation so that you don't end up burning bridges because at the end of the day, this is your home hospital, this is the one on your doorstep you go to when your child is sick and you need to work as a team with your doctors.

I have used the Patient Liaison service (PALS) many times over the years, the one at Great Ormond Street Hospital is particularly good and the team there have helped us many times over.  They have come to meetings with us, been a listening ear and helped co-ordinate multi-disciplinary meetings of many professionals to discuss Daisy's care.  Like most of the NHS, the PALs service is not perfect, but it will only improve if people use it properly and involve the service.

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.

It is not fair that parents have to take on this dual role at such a stressful time, it feels like the doctors have all the power but they too are frustrated, maybe the NHS needs to learn from the Parent Partnership Service in the education sector , the aim of the PPS "is to provide a menu of flexible services for parents whose children have SEN in order to empower them to play an active and informed role in their child's education"  The Parent Partnership Service is perhaps the model that the PALs service needs to look to as parents become more informed and decisions on children's care become more complicated.

Some doctors are just not equipped to deal with parents who push back, who disagree who demand a referral elsewhere, they too need support in how to deal with these situations without breaking down the position of trust with the families - I can't imagine that this is top of the curriculum list in med school but  surely how to communicate and work with every increasingly savvy parents needs to part of any medical professional's training?

What if Ashya's mum had confided in me that they were going to take him out of the hospital and go to Spain?  I would have urged her to think it through.  If you take your child away from the ward and don't return of course the police are going to be involved, the hospital has a duty of care to ensure the safety of your child.  Children are fragile and their condition can change suddenly, I know this because I have experienced it with my child.  So while he was stable post surgery would you know what to monitor?  Would you be able to recognise signs of infection? Increase intra-cranial pressure? Anaemia?  Could you re-pass the ng tube if it had come out overnight? 

If she had confided in me, I would have done everything to encourage her to push for the second opinion in another hospital.  To get hold of his scans and results (everyone has a right to these, you may have to pay a fee but you can get copies of notes by going to the PALs office and filling in a form) and send these over to the Czech hospital.  To turn to charities such as Headsmart for advice, to contact other families, her MP, the Chief Executive of the Hospital Trust and failing everything, to find out about getting legal support and advice. But do everything possible to ensure that you don't burn any bridges at your home hospital - you will need them, whether you like it or not, when your child is so complex and rare then there are not many centres who can manage his care.

No parent should feel that they are so backed into a corner that they flee the country and find themselves in a worse situation than before. No doctor should feel that they are having to negotiate rather than treat and cure.  Both parents and doctors need to be given better support to manage the complexities of a situation where there is a disagreement on how there child should be cared for.  It's too easy for the doctor to wave the child protection flag when sometimes what is really needed is a trained mediator who can work with both the doctor and parent so that the trust and teamwork which is so crucial to get the best result for the child does not break down.

In Ashya's case this has broken down so terribly now.  He is separated from his parents, his siblings, his face is all over the press, the police, the doctors are being pilloried and in the middle of it all is a little boy who needs the appropriate treatment for him. 

  I hope they all come back to the UK, I hope the parents sit down with the medical team and they have a discussion about what to do next, I hope trust is rebuilt, I hope they get that second opinion, I hope that the  treatment they want is appropriate and works but most of all I hope that those that can make a difference learn from the case of Ashya King.

6 comments:

Helen said...

Having been away for the last 2 weeks I have missed this case and have come back to a number of comments and views from both sides. As usual, Steph, you have summarised this in a heart felt and well thought out way. Your own experiences allow us to see both sides of a situation. I hope that Ashya's parents are able to be reunited with their son soon and that bridges are rebuilt so that his health care can move forward, not back.

Fiona said...

Great post, particularly like the advice of getting a second opinion in another UK hospital while keeping on good terms with your local one.

Muddling Along said...

I'm bookmarking this to come back to - we're just starting along a journey with a rare congenital issue with our son and this is such sensible, coherent advice that I know I will need again in the future when we have further challenges down the line

Thank you for writing this

stephnimmo said...

Thank you. You may also be interested in this post http://www.wasthisintheplan.co.uk/2011/10/i-wish-someone-had-told-me.html

Downs Side Up said...

The wisest words I have read on this topic Steph. I have thought of you and Renata a lot during this media coverage. Two women who know. H

Debs Aspland said...

Steph, this was a great post to read. I am sure if Ashya's parents did see this now, they would have wished to have met a mum like you some years ago. Keep up your great work, Steph x

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