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Over the weekend Stuart had to stay in hospital and was administered high doses of steroids. Of course I went home and googled, as did our families and friends, and we were horrified to learn the median survival time is just 15 months.
Being complete novices, we weren't aware that time was of the essence and that multi disciplinary meetings (MDTs) only happen once a week. The hospital Stuart was in does not deal with brain tumours so his case was referred to a bigger hospital an hour away. Little did we know that the MDT wasn't scheduled until the following Friday.
Buckle in, this one’s going to be a long and slightly thorny one. Knowing what I know now I would contact surgeons and get the MRI images passed on asap to get a second (in this case first) opinion. Stu had to wait 14 days and that was too long which meant the tumour went from operable to inoperable. IF we had found Dr McEvoy sooner would things be different? Maybe. We will never know, but what I do know is that looking back we put too much trust in just one doctor who we knew nothing about and were yet to meet and here we are.
We should have asked for the CT and MRI scan to be sent to another surgeon and oncologist for a their opinion immediately rather than waiting for the consultation with the local surgeon and oncologist Stu was originally referred to. We may have got the answer at around the same time, or they might have had their MDT sooner but we would have had options instead of feeling like sitting ducks. Some surgeons and neuro oncologists are more maverick than others - they are rare but they are out there. Each private consultation we had was around £200 - £300 but having the answers sooner if you can will save time, plus second opinions can be with other NHS teams, you don’t have to take the private route.
I need to word this very carefully because I don’t want to give the wrong message or for my message to be misconstrued. Reading this section might make you feel nervous about trusting your doctor, and that’s not my intention. I want you to be able to feel empowered to reach out to other teams and other doctors if you want to, to be able to feel a sense of control over the medical treatment you’re being offered, and to be as pro-active as possible. I’m definitely not apportioning blame or discouraging you from trusting your NHS team. While there will be systems, administration and a host of other things at play on your journey, their main goal must be aligned with yours – giving you or your loved one the best chance possible against their tumour.
One of the areas of Stu’s journey that unfolded over time was the disparity between access to treatment and treatment options. It’s not talked about a lot openly, (no one likes to complain about the NHS, do they?). But it is talked about between patients on forums, and what we learnt is that access to treatment is not always equal. Within the NHS it can be a postcode lottery, and with access to some treatments it boils down to your financial situation. It’s a stark reality and it shouldn't be that way, but it is.
Stu’s first medical team were lovely, but they didn’t offer any options and it was all very doom and gloom with very little positivity about anything we wanted to run past them.
Neither Stu nor I are medically minded, nor did we have experience in this kind of scenario previously so we didn’t immediately know that Stu was entitled to move hospitals to get different opinions.
We both feel very fervently about this: people should know that if you don’t feel happy/satisfied/insert whichever word is appropriate, then you are allowed to seek out a second opinion even if the answer is similar – it’s your life, it’s worth asking and you have to be your own advocate right from the word go.
Being your own advocate as a brain tumour patient can be difficult. I use brain cancer as my example because thats what Stu had but I’m sure there are other cancers that strip you of your ability to think for yourself and make decisions.
After changing to a different medical team Stuart started improving, his medical team including Oncologists in Germany and America agreed that his tumour was stable.
We also found a surgeon in London who agreed that he could operate on him, however it was decided that it was more beneficial to continue with the treatment at that point. I will forever wish we had got his opinion at the beginning. I'm not for a moment saying that logistically it’s easy to access treatment at a different hospital (we found it tricky), but it may give more options.
There can be a delay in getting the second opinion and the timing can be dependent on how swiftly your current team send the information over. With that in mind it’s important to start building your medical notes as soon as possible, including copies of your scans and blood results in case you need to send these to doctors outside the NHS system. We got well acquainted with WeTransfer and Dropbox and created a spreadsheet with all of the relevant data.
If you want to take ownership of your health and advocate for yourself do not be afraid of doing your own research, connecting with other patients and doctors. There are many patients that have taken matters into their own hands and have lived or are living longer than expected.
We are putting this message out there in case, like us at the beginning, you didn’t know that you don’t have to stick with the medical team that’s closest to you in postcode. If like Stu you have brain cancer you could search for a centre of excellence across the UK and abroad.
Here is a list of Neuro surgeons and Neuro oncologists that were recommended to us:
Dr Andrew McEvoy
We consulted with him privately via The Cleveland Clinic but he is an NHS doctor at UCLH. Out of all the surgeons we consulted with, if Stuart had been eligible for surgery we would 100% have chosen him. Their contact details are in the links below:
Dr Matt Williams
We consulted with him privately and then transferred Stu’s NHS care to the hospital he works at. With hindsight if we could have kept the standard of care treatment local if would have been better for Stu and whilst we didn't find the logistics easy we didn't think it would be possible for Stu's original doctor to work together with Dr Williams because he didn't agree with anything above NHS standard of care. Dr Williams offered us something that we hadn't been shown: options and hope. That was priceless to us. He was also used to working together with Cegat and introduced us to Dr Castro.
Recommendations from other patients and caregivers:
- Dr Liam Walsh Neuro Oncologist Royal Marsden
- Dr Paul Mulholland Consultant Medical Oncologist University College London
- Professor Keyoumars Ashkan - Kings College London.
(We consulted with Professor Ashkan he's the UK expert in DCVAX and has a licence to administer it from NW Biotech. If we had pursued DCVAX we would have chosen him).
If like us you feel overwhelmed with opinions and logistics there are two amazing charities whose sole aim is to improve the landscape of cancer care in the UK.
ACT for Cancer Foundation: "Acting on behalf of everyone with a hard-to-treat cancer. We work to empower patients and clinicians to exercise their ‘right to try’ new and experimental cancer treatments"
We worked closely with them in the beginning to find a way through the mud. Click on the logo below to read more.
The team at Act for Cancer Foundation and our dear friend Cordelia Taylor have set up a company called Act Above and Beyond. They specialise in coaching you through your cancer diagnosis, helping to manage the logistics that cancer treatment brings to you and your family, navigating you through the clinical process and building a support team around you.
ACT Above and Beyond was not around when Stuart was first diagnosed however the team were an integral part of forming Stuart's treatment path.
As part of the Stuart Bathers Fund we are helping patients to access the Patient Navigation Service. You can read more about them and also the fund by clicking on the links below:
Tessa Jowell Foundation and Tessa Jowell Brain Cancer Mission: One of their projects is recognising which hospitals in the UK offer excellent care for brain tumour patients.
"The Tessa Jowell Centre of Excellence designation initiative recognises and awards neuro-oncology centres for their excellence in patient treatment and care and research. It aims to enable and encourage as many centres as possible to achieve ‘Centre of Excellence’ designation to collectively raise the bar and set an example across the cancer community on how this type of effort can lead in the treatment of rare cancers."
At the time of writing this there are 17 centres of excellence across the UK. You can find all of the hospitals that have been awarded Centre of Excellence status here and read more about Tessa Jowell Foundation and the Tessa Jowell Brain Cancer Mission by clicking on the logo links below.
What is a second opinion?
A second opinion means seeing another specialist doctor. They will give their view on your diagnosis or treatment. This usually means going to a different hospital or GP surgery.
Stuart’s brain tumour was discovered on a Friday afternoon at around 5pm. The moment we found out was a whirlwind blurry nightmare of a conversation with not too many answers to all of our questions. It was discovered after a CT scan in our local A&E department in Gloucester. It was fortunate that the doctor who was assigned Stu’s case had previous experience with this field of medicine so was able to tell us that he suspected GBM.