Set adrift on the Irish sea

lost at seaSo, where the hell have you been?

It’s a fair question and I will try to explain. I pledged when I started these pages that I would try to be interesting and helpful. I wanted others affected by brain tumours to gain from the experiences I had, and perhaps gain from the meandering thoughts I had to share.

Since my last post, before Christmas 2014, not a great deal has changed in my health. I have, of course, had my regular six-monthly MRI scans and meetings. And at each one, my neurologist has told me that my tumour continues to grow, but not so much that there’s any desperate action needed to bring it into line.

Just a low grade continuing to do what a low grade does. Grow slowly. We continue to watch and wait.

My seizures have continued on a daily basis, but most of the time have not been so bad as to prevent me doing too much. In the very best periods, I’ve been racing my bike and joining cycling challenges. The actions of a man in the very best of health: or at least one trying not to worry too much about the lump growing in my head.

Tumours have been on my mind, of course. I’ve written another book, more generally about the impact of cancer, and have helped The Brain Tumour Charity with its media and lobbying work. But this past year I’ve not felt that anything sufficiently different, exciting or significant has happened that has merited my writing here.

But now things have changed. It is time to start writing again.

Though my health remains generally good, over the coming weeks I have news to share about changes in my seizure control medication, changes in my health, and my battle (ultimately lost) with the DVLA about my ability to drive.

But before that, there’s something much more significant (and I hope helpful) to share. An unfolding drama to which I somehow thought I would be immune.

I have, it seems, been living in the infamous London bubble – even though I lived in Essex. I’ve been cared for by the National Hospital for Neurosurgery and Neurology (NHNN) in London, by probably some of the best brain doctors and surgeons in the United Kingdom.

Appointments have been easy to come by. NHS actions regarding my condition well reasoned, and apparently unrestricted by silly things like the availability of budgets.

For a few years I have heard stories of others from around the UK. Those who have struggled to have their headaches, seizures and concerns taken seriously by specialists. Those who’s brain tumours have been initially missed, and who may have suffered more as a result. Those sitting on endless waiting lists who haven’t even yet had decisions made about their care.

And my reaction has been sympathy, but a failure to recognise that pattern for myself. Things are OK from where I’m standing, so surely they must be pretty good across the rest of the UK too?

My London bubble was due a bursting.

In the summer of 2014 I moved with my family to Northern Ireland, to a town on the outskirts of Belfast. It is somewhere we have lived before, offering good cycling hills, beaches, vibrancy and variety. And unlike in rural Essex, I’m not trapped by my inability to drive.

Moving back to a city has offered the liberation I sought, while allowing us both to continue to try to work and to give our children the best opportunities we can.

In November 2015 – my most recent MRI scan and results day – I was told that London could no longer be responsible for my care.

Health is a devolved area in the UK, which means that Northern Ireland has to care for me. While living in England, I could choose to be cared for by NHNN. Now I live in Belfast, that choice has gone away.

Instead of the security of seeing the same doctor every six-months, being scanned on the same machines and being comfortable with professionals whos decisions I’ve come to trust, I’ve been cast adrift with no knowledge of where I’ll end up.

I now know I got too comfortable in London and assumed the picture was the same UK wide. I now see the situation for what it is.

Right now, I do not know what the future holds for my medical care. Because right now I do not know who is caring for me.

In London I was due my usual MRI scan in May 2016. That has been cancelled, and as yet I have no replacement. In fact, I do not yet have a consultant. I do not have anyone, bar the usual 999 service and a scribbled note of an epilepsy nurse, to call in an emergency.

I sit on a waiting list.

I share this, because I hope it will be helpful and revealing for readers who also find themselves similarly in limbo. My aim is to share what happens over the coming months as we try to get my care sorted out.

The NHNN made the situation clear: I need to be referred by my Belfast GP to a relevant consultant here to make decisions about my care. That consultant can decide to treat me in Northern Ireland, or if the expertise isn’t here, to refer me to England – perhaps even back to NHNN.

Days after I received the notification in November, I wrote to my GP. I outlined my condition in detail and asked to be referred to a particular neurosurgeon in Belfast who comes recommended and is an expert in glioma tumours.

I then wait two months and I hear nothing. At the beginning of January I go to see my GP. I need to change my drugs, so I take the opportunity to query what’s going on. He tells me he referred me a month ago and I should just wait for the consultant’s office to get in touch.

So I wait some more.

After another month, in the first week in February, I decide to get proactive. After all, I’m due an MRI in May and time is ticking away.

The neurosurgeon’s secretary tells me that I have been referred successfully. My case has been marked as routine, she says. There’s a backlog at the moment, so by her estimation I should be able to see the neurosurgeon in the summer.

The summer of 2017.

I take a breath. I’m exploding inside, feeling sick rising in my stomach at the shock. I try to explain. I’m on a six-monthly MRI protocol. I’m supposed to be checked again in May. The tumour is actively growing. Eighteen months is an awful long time just to see the consultant, let alone discuss when I will next get an MRI scan.

Mmm, she says, I see what you mean. She puts me through to the hospital appointments office, so I can see if they’ve got me a date yet.

No they don’t. My referral hasn’t been passed to them yet. I’m not on their system.

I ring off and stare at the wall. I have been cast adrift on the Irish sea and there is no land in sight. Am I just supposed to wait? And if so, for how long? My stomach turns over again.

Then the neurosurgeon’s office calls back. They’ve found a space for me to see him, in a month’s time. Gratefully, I explain to the secretary that the new consultant will need to see my MRI scans. She tells me that Belfast works on a different system to London, and she doesn’t quite know what we can do about it.

So I talk to the NHNN in London. They kindly agree to send the MRIs across to the new consultant. And I write another lengthly letter to him, again outlining my condition and highlighting in nice big bold type that I need to have an MRI in May.

When I hit that mid-March meeting with him, I don’t want it to be a case of: Well, what seems to be the trouble?

I want to hit the ground running. I want him to have every piece of information he needs so we can get down to brass tacks: What’s going to happen now?

A week later I receive another phone call. It is from a different hospital. They’ve made an appointment for me to see a neurologist. My GP had referred me because of my drugs changes.

The distinct impression is that the neurologist at one hospital will look after my epilepsy, while the neurosurgeon at another will look after the brain tumour. In London, they were the same person.

I write a third letter, this time to the new neurologist. I tell her about my seizures and drugs and provide instructions for how she can get my MRI’s from my new consultant at the other hospital.

So now I am at a crossroads. And one I know many brain tumour patients face.

I have no reason at all to believe my new consultants here in Belfast, or their decisions, will be any different from those in London. I’ve no reason to believe my care here will be better or worse. But I’m nervous nevertheless.

I know there are bound to be far fewer brain tumour patients dealt with by Belfast hospitals, compared with London ones. Just on a number-of-patients basis, the expertise and experience on offer just won’t be anything like what London deals with.

I know Belfast has the power to transfer me back to London, and I’m already very keen to pursue that avenue. I feel insecure and want to go back to the NHNN. Back to my old neurologist. Back to the one who knows my brain and my tumour and my epilepsy inside out. Continuity of care, I know, is an important factor in brain tumours. If something is going awry, he’ll be the one to spot it first.

But I fear the decision about whether I’m cared for in Belfast or London will be made not by a medical professional, but by a bureaucrat sitting in front of a huge spreadsheet. A spreadsheet that helps management to make difficult decisions about budgets and priorities.

This may be a necessary evil in the NHS, but it doesn’t feel good being on the receiving end.

If I hadn’t have made that call at the start of February, the chances are I’d be waiting many months, if not a year, to see a new neurosurgeon. I’ve had to arrange the MRI transfers myself. I’m articulate, middle class and a patient-expert on my type of tumour. How many brain tumour patients are there who don’t have the energy, the knowledge or the nous to push like I have?

So far, I’ve already found the care transfer stressful. It will be interesting and I’m sure yet more stressful as the following weeks and months unfold. My health appears not to be changing that much right now. But everything around it seems to be in flux.

Whatever happens, I hope sharing the journey will help those facing similar circumstances.

5 Comments

  1. Well written piece as always. I am under the care of a neurologist and a diabetes team and would never move for the reasons that you have outlined. I trust and like my teams and they trust me. I am an expert in my conditions and wish to be treated as such in a patient centric team. Getting them to talk has been a change though. Having contact with many people in Twitter has shown me that I got lucky in the post code lottery.

  2. Ah ha i see why youve taken so long to respond to me now. Sounds pretty shitty. Cant imagine leaving my brilliant team here in bristol. What made you up and leave for belfast of all places, its really not my place to advise. But i really really think youll feel more in control if you start chemo as soon as you can. The younger and fitter the better. My first 3 cycles of PCV were easy. The last 3 really hard. Now its over and life is brilliant. A new positive stage has begun. You sound like your tremendously fit and mentally strong so why not just take a leap and get one the chemo. It might make your seisures worse it may make them better. Youll never know until you try and chemo gives you back some control over the evil lurking in you brain. You take it at home, spend time with your family. Choose what you do with your time. And call the hospital as soonas you feel feverish or poorly. Sounds simple? Well in my experience it was. Then one day its over and i can guarantee youll feel better when you look back afer the first MRI and ask your tumour how it liked that!

    Jesse. All opinions my own. Decisions all yours.

  3. hi gideon- i had the same problem when i moved to Wales- i got a referral from my doctor to radcliffe hospital (oxford), mainly due to losing sight in one eye and oxford needing patients for an ongoing study (optho neurology) that sufficed for a while -and was ok (mine is only a benign meningioma), however as slow growing as it was/is it was faster than the nhs could keep up with! luckily i was on the cusp of moving to U.S.A, and did so – brain surgery, radiotherapy and huge bills later -still having 6 month scans.my advice to you is get any/as many as possible doctors, specialists etc to look for a research group or doctor who is writing a paper on your type of tumor – that way care is more regular.20 years on and have finally found the right medication to get my seizures under control. in my case it was difficult to not let the tumors take over my life, to reclaim my life i learned white water kayaking and horse riding (i was told that i was exhibiting risky behavior) some of the best times i’ve had in my life. keep control of your own life-choices, gambles are inevitable good luck

  4. Hi Gideon thanks for the update i followed your blog religiously, thats great news you have been feeling well this past year its good to know. My partner mark is in a similiar situation tumourwise (diffuse low grade glioma, left temporal lobe inoperable, diagnosed two years ago in may) he got a biopsy last Wednesday as the tumour is showing signs of enhancement. Mark attends RVH in Belfast.

  5. Hi Gideon,

    Like all of us on here it is good to hear from you again – albeit not with great news re the doctors, MRIs etc. At least there is nothing too dramatic with the actual tumour. I’ve a couple of ideas for getting around some of the log jam you may be in. I’ll email. Cheers for now. Keep the wheels turning.

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