Hydrocephalus week interview – living with hydrocephalus, treating hydrocephalus

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As Heads Up for Hydrocephalus week draws to a close, Katherine Pearce and Helena Henderson from our Taunton team sat down to talk with Lizzy, a client of Katherine’s who has hydrocephalus, and John Goodden, a neurosurgeon at Leeds, about the trials and tribulations involved in living with, and treating, hydrocephalus.  This is a small part of their discussion.

Katherine: Thank you both for joining me today to talk through our different perspectives of hydrocephalus. Lizzy, what are the day-to-day realities of hydrocephalus for you?

Lizzy: The biggest question on any given day is whether I’m going to have complications with my shunt. If everything is working, then I can just lead a life as normal.

Katherine: That’s what I see with my son, who’s nearly 8 and has hydrocephalus. If everything’s working, it would be impossible to tell that he even has hydrocephalus, but when problems occur it impacts everything.

John: When living with hydrocephalus or you have a child with hydrocephalus – does it feel like you’re living with a time bomb or do you find you get on with it or forget about it?

Katherine: I wouldn’t describe it as living with a time bomb but there is a constant underlying anxiety that something will happen – that the shunt will fail in some way.  When something shunt related or connected does happen, then the fallout is quite extensive. There is a ripple effect that goes wider than just the person who is affected.

Lizzy: There is an unpredictability of living with a shunt, and not knowing whether I will be ill today.

Day to day living when a shunt is working is perfectly normal. No problems with headaches – life’s good. It doesn’t disable you from doing anything. It’s when you start getting problems with your shunt that it starts really impacting. For me, when I’ve had a particularly bad attack, I can’t care for my boys, my husband has to take time off work and if I end up in hospital it is usually for 24-48 hours. It turns our lives upside down. I can’t communicate because I am in so much pain.

This is when we look to the expertise of doctors and nurses. John, what do you find the most difficult aspect of managing patients with hydrocephalus?

John: There can be all kinds of challenges, largely dependent on the patient. With children, for example, we often find it is common for parents to bring them in during the winter months because they’ve got a cold, but the symptoms are very similar to those of having a blocked shunt. It’s a perfectly reasonable assessment, but it’s up to us to diagnose it without unnecessarily exposing our patients to risks such as the radiation of a CT scan.

On the other hand, if someone has come in with a low-grade temperature and is feeling out of sorts, it can take a few days to get to the bottom of the issue and then sort it out.

Katherine: John, when my son was first diagnosed at 12 weeks old, we were told that shunt surgery is a routine operation. I remember feeling that was dismissive of our worries and concerns. At the same time though, the suggestion that it is routine surgery was almost reassuring. How common is the procedure?

John: Very common, especially in paediatric neurosurgery. If you want to be a paediatric neurosurgeon, this is one of the standard requirements of the job. I’m sure the doctor you spoke to was trying to be reassuring, but unfortunately that didn’t come across.

When talking to a patient it’s important to think about how things are phrased, and I could see how “routine” could sound dismissive when someone is worried. As professionals we’re always looking to find better ways to communicate with patients.

Katherine: After my son’s first surgery, we were told “if the shunt blocks, you’ll know about it”. I had no idea what that meant. I needed more detail to come to terms with how significant this would be on our family’s life. Lizzy, you were told the same thing. How did that make you feel?

Lizzy: My expectation was that if there was a problem with the shunt, I would be feeling ill very quickly. That message caused me a lot of distress really because at 20 years old, I had just been told that I have a lifelong condition, had had brain surgery, half my hair had been shaved off and then I was flung back out into the world without any way of dealing with it. At that time, I was given no advice.

Thinking back 20 years when my shunt was put in, I can’t remember being given any literature to read or offer of group attendance or charity support. One question I had was “can something go wrong with my shunt and how will I know?”  Like Katherine, I was told I would know and that lead me to believe it would be a quick onset, but my experience is that a shunt problem can have a slow onset and the tests to prove the problem are long and tedious.

When you receive the diagnosis there is so much worry about it – so many questions – and you will probably forget to ask half of them. Doctors need to be more open and honest about the potential problems that can arise after you’ve had a shunt inserted.

I felt there was a lack of information, and that’s why it’s important to do this interview now – to provide information to people. Now I have lived with hydrocephalus for 20 years, I know you can live with it and have a normal life with it. It’s important to get this across.

John: Patient information is a massive thing – the quality of patient information out there varies a lot. We have information books for adults and children, but they were developed in-house.

Part of the difficulty nationally is that information like this needs a degree of local variation – for example, our books contain details to let patients know who to contact on the local ward.

Another thing that can be easily underestimated is the importance of a specialist hydrocephalus nurse.

Lizzy: Absolutely, a specialist nurse makes all the difference. If I can’t get through to a neurosurgeon then having a really good secretary or a specialist nurse on hand is fantastic, because it keeps those channels of communication open. We can update them or talk through a problem.

Katherine: Information does help but also the messaging around how we should respond to our own concerns. I was told by the nurses at the hospital to trust our instincts and that they would listen to that. Our experience is that they always have.

When my son was first diagnosed, we found the charity Shine offered amazing support.  The literature they provide is really helpful but John is right, for the best effect there also needs to be local information relating to the hospital.

For me, I need to have information to help me understand the why, how, and what of a situation but others may feel differently.  As well as there being a local focus, information needs to be delivered in a way that’s appropriate for the audience. Tailored communications that include localised information are very important, as is presenting info in different ways for people to access.

Coming back to Shine, we have had books that we can take into school so my son can explain why he has stitches on his head and shaved patches. It is really important to have that information to be able to communicate about what hydrocephalus is and how it can impact.

Lizzy: The Hydrocephalus Association have a YouTube channel with some Q&A sessions on different topics that I’ve found really interesting and educational. I’ve found Shine equally just as approachable and informative.

Katherine: John, what do you envisage will be the future for hydrocephalus patients? Where is the research going?

John:  I think that shunt technology will develop and improve. The results of the BASICS trial (the British Antibiotic and Silver Impregnated Catheters for ventriculoperitoneal Shunts) was published in 2019 and has proven that antibiotic impregnated shunt tubing results in a reduction of infections.

Katherine: I read this week during Shine’s Hydrocephalus Awareness Week that there is a petition in relation to Bactiseal TM  shunts. Does this relate to the BASICS trial?

John: Bactiseal TM  is one make of antibiotic impregnated shunts, but there are others available under other brand names.

There is also lots of interesting research going on involving implantable pressure monitors. For me, from a neurosurgeon’s point of view, the ideal shunt system would have an implanted pressure sensor automatically directly linked to the valve. But as with anything, the more complicated the device, the more that can go wrong.

Implantable ICP monitors are relatively new technology and have a lot of potential. These devices are in their infancy. There will be lots more research and we will be working out more as we go forward, but I think both technologies represent a potential step forward for those with hydrocephalus.

Lizzy: I have a question about GPs.  Mine is fantastic, and we have a great relationship. But I do read an awful lot on social media platforms where people’s experience with their GP has been a lot more negative, for example, struggling to be referred.

What advice would you give to someone in that position, John?

John: Untreated hydrocephalus and a blocked shunt is a life threatening condition. It’s both reasonable and correct to go to your local A&E if you suspect you have a blocked shunt.

There are unfortunately still some prevailing myths about hydrocephalus. Some believe that if a shunt has been in for a prolonged period of years and the patient is still well, they don’t need the shunt anymore. If the last shunt operation was 30 years ago, it’s equally likely that your patient could be well because the shunt is still working. The important thing is how this needs to be followed up.

Most hospitals now have a shunt pathway, where if a patient is worried about it they can come in and see someone the same day. I think this is a much better way to provide care for hydrocephalus – avoiding potentially unnecessary scheduled appointments and channelling that resource into the provision of 24hr access for patients who need it.

Katherine: My son has never needed to go to our GP for a hydrocephalus reason – every situation has required us to go direct to A&E but I anticipate this might be different when he becomes an adult. Educating GPs is probably a really good thing.

John: That’s my point – educating them. This could be part of the role of a specialist hydrocephalus  nurse. They have a role to play in filling an education gap there.

Ideally though, there needs to be a partnership between neurosurgical teams and GPs, working with each other.

Katherine: The information in clinic letters and discharge summaries to GPs should be important in that respect.

John: Yes, I’ve learnt that putting a list of diagnoses at the top of every letter is key as well as detailing the type of shunt a patient has and when it was last revised. The GP and the hospital emergency team have an easily accessible summary of the important information which they can refer to quickly and easily.

Katherine: There is so much more to cover and hopefully, we will be able to discuss other hydrocephalus issues in future. For now, I’d like to thank John and Lizzy for being part of this, and giving us a glimpse into two different realities that, while very different, both stem from hydrocephalus.

If you have any questions or concerns about the condition, we’d encourage you to visit the site of our corporate partners Shine, who provide a wealth of useful information and support.

Errors in the management of Hydrocephalus are rare, but can have significant consequences. If you have concerns about treatment that has been received, please contact us.