Assumptions of Power

a brief description of how our power is assumed by education, health and social care professionals- at least this is how I see it- please comment and respond with thoughts, challenges and ideas

my daughter, Yanna is almost 10- and for the last 5 years she has been disabled. in 2014 she was diagnosed with an ultra rare neuro degenerative disease called Batten Disease. The disease starts around 3 to 4 and the deterioration is fairly rapid. Typically, children with CLN2 Batten Disease do not live into their teenage years, after loosing their ability to talk, walk and basically move. They go blind and have epilepsy like seizure. They suffer from childhood dementia.

I love Yanna and her mum does too. We are good parents and I do not think there is one time either of us have withdrawn love or made her feel wrong. Were she to have developed as a neurotypical child, I believe Yanna would have been well rounded. In part, that would have been down to me and her mum. When Yanna started losing her skills, the usual go to parenting skills go the way of all things. You can’t rely on your parental intuition in the way you typically would.

Medically, me and her mum are powerless to keep Yanna alive. The enzyme replacement therapy she gets every two week is delivered by a team of clinical specialists at Great Ormand Street Hospital, and the artificial enzyme took 20 years to develop by a multi billion pound pharmaceutical company. The power to sustain Yanna’s life is in the hands of the medical profession. So, her mum and I need to lower our boundaries as parents, we need to let people in- ‘professional strangers’ a unpleasant term directed by some to highlight their alien presence. Yanna spends a lot of time at hospital and for the last 5 years Yanna and her mum have spent a night in hospital on a ward every 2 weeks.

There are, nevertheless, decisions about Yanna that we, as parents are entitled to make. Indeed, there are decisions about her medical care that we are expert on- there are things that her mum knows that she has to teach the new clinicians that come into Yanna’s life. We still have power, despite the guests in our life holding the keys to the cookie cupboard. There are many times, lots of times, where we are included in decision about Yanna’s care; there is mutual respect between ourselves as her parents, and the clinicians as her ‘saviours’.

But, there are times when our power is assumed by professionals- decisions are taken where we are not included- decisions that we have crucial information about that could make a huge difference in the decision making process. I will give a few examples but will not go into too much details as I do not want to lose you and this isn’t about blaming- something I would love to indulge in, but most of the time manage to hold off on.

Yanna has a port in her skull, a tube that goes into a ventricle in her brain, it is through this that the artificial enzyme is delivered. It is hard to get the needle into this port, and clinicians have 3 attempts before they have to give up and the enzyme is called off for 2 weeks. After a while, clinicians get the hang of inserting the needle and the pressure is off. This means, that when we get a new clinician trying to insert the needle, they have difficulties and struggle to get the needle in first time.

The last time this happened was back in 2018 and we had to take Yanna home without having the treatment. Never good. The clinician said they would consult with the neurosurgeon on what to do, and as this was over christmas, we went back home for the christmas holidays. We got a call from the hospital in that weird time between christmas and the new year about the scheduled medical intervention for the 3rd January. We had no idea what this was about and after a bit of phoning around it tuned out the medics had made the decision to remove the port from Yanna’s head and replace it with a new one, as they believed in was blocked and that was the reason they could not insert the needle.

We tried to explain that whenever a new clinician tried to get the needle in they struggled ‘check the notes!’ I said, it is all recorded. They didn’t take our word for it and didn’t go back in her notes. We were in a tricky position here, because if we refused the operation and insisted they tried again, and they failed, then we would lose another 2 weeks plus all the time it takes to operate on her head, and insert a new port. Fortunately, Yanna’s mum is smart, smarter than me when it comes to these things.

Yanna’s mum made a deal with the neurosurgeon- put her under general anaesthetic, shave her head and get ready to operate- but before you do this, just try one last time to try and get the needle in- as she is under general anaesthetic, it would be easier to explore the area with the fingers without the risk of waking her up. A few hours later, Yanna was having her infusion and she had been spared 2 invasive operations on her head- an operation that involved the brain and deprives her of a few enzyme replacement sessions- the thing that keeps her alive.

This is what I mean when I say our power is assumed by professionals- we as parents trust the professionals, allow them into the most intimate parts of our lives and then, when trust is needed most, they take the power away from us, they assume the power is theirs. These things, sadly, happen more often than you would think. It happens at school and it happens in social care. One examples will illustrate quite how dangerous and hurtful this is, although there are numerous.

Children with Batten Disease will develop difficulty swallowing and professionals regularly check ‘the swallow’ of the child- there are varying degrees of this test, some more invasive than others. Professionals often push me and her mum to think about feeding tubes, the reasoning being that were we to have the operation when the disease is advanced, it could damage their health. In the meantime, the option of thickener in drinks is always being pushed. As Yanna’s parents, we know that Yanna does not tolerate thickened water- we have been very clear about this, and Yanna is still able to swallow, rarely coughing.

Nevertheless, in the height of summer in 2018, I took Yanna to school and was told by her teacher that they would only be giving her thickened water. I told them she would not drink it and at what point in the day would they revert back to normal water, afterall it was hot. Ah, no, the Speech and Language Therapist (SaLT) had made the decision and now they were ‘legally obliged’ to thicken her water. I asked to speak to the SaLT, but they were not on site, as they covered another school in the borough. So, they had noone to refer to. It felt surreal, as I tried to reason with her teacher over the sense in depriving a profoundly disabled, life limited child, of water in the height of summer. That is our power being assumed by professionals.

An approach that a lot of smart, experienced people suggest, is to love bomb professionals. They are basically suggesting that we sacrifice out dignity as individuals in order to get what we need for our children. That suggestion, to me, is obscene and lacks self respect- I do not condone this. I have another way, one that maintains an adult to adult relationship between the family caregiver and health, education and social care professional. I suggest that we have a meaningful conversation, a conversation where we create meaning together- not a transaction where we ultimately have to submit or worse, lose our temper and humiliate ourselves.

This meaningful conversation can only happen when all the people involved are relating on a personal, open and vulnerable level. For me, I know that I am vulnerable by being the father of a medically complex, critically ill child. It is easy to make me cry- just start pushing the buttons. In order to get the care for our child, we also have to be inherently open and talk about our personal lives. So, it is a lot harder for the professional, as they have this thing called a ‘professional boundary’ most professionals use them as a shield to deflect anything that doesn’t relate directly to the ‘job’ at hand. If we are to move beyond this impasse, we need to figure out how we are going to have this conversation.

For me, this is Operational Coproduction(as opposed to strategic). Family Caregivers sit in a circle with health, education and social care practitioners and we start to co-create the conditions for psychological safety. We have a check in, where we get a temperature check of how everyone in the room is feeling. At the end of the meeting we check out. After doing this over a number of weeks and months, we start to trust each other, we start to rebuild relationships. Check ins are not about disclosure, about revealing something private- it is about talking about how we are feeling today

{end of blog post, to learn more about this process, keep an eye on future blog posts}