After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.
“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”
This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.
She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.
To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.
And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.
“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.
“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.
“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”
It was the lack of available support that really concerned and surprised Helen.
“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.
“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.
“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”
Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.
This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.
The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.
With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.
Through all this Helen was fighting her own battle after being told she had head and neck cancer.
She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.
“I was just focused on getting fit so that I could go with Meg to America for the surgery.”
Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.
Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.
After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.
“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.
“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”
From this Brainstrust was born.
Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.
It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.
“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.
“Because we have that experience, we knew what the information was that people would want to hear.
“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”
Since then Brainstrust has gone on to support thousands of patients and their families.
The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.
Since its founding in 2006, care around brain tumours has drastically improved.
It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.
Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.
“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.
“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.
“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”
Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.
She draws on the example of post-stroke rehab and the general care stroke survivors receive.
“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.
“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.
“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”
Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.
She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).
Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.
“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.
“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.
“Just hearing the testimonials of the impact that our work has had is what keeps us going.
“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”
£1m dedicated to MND research through 7 in 7 Challenge
A £1million fund has been created to lead new research into potential treatments for Motor Neurone Disease (MND) through the efforts of an iconic challenge by Kevin Sinfeld.
Kevin, director of rugby at Leeds Rhinos, raised over £2million through his 7 in 7 Challenge, inspired by his former team-mate and close friend Rob Burrow.
Rhinos legend Rob was diagnosed with MND in December 2019, and Kevin completed seven marathons in as many days to help boost badly-needed research into the condition.
Now, with £500,000 of the money raised through the 7 in 7 Challenge ring fenced for research, that sum has been matched by medical research charity LifeArc.
The move has created a £1million joint fund established by the MND Association and LifeArc, which will support research projects focused on developing new therapies or repurposing drugs already approved for use for other conditions.
“This is fantastic news and an amazing contribution from LifeArc,” says Kevin.
“When we set out to complete the 7 in 7 Challenge we hoped to raise awareness and funds to support the MND community but it is so wonderful to see the inspiration it has given people and organisations, like LifeArc, so they too can support the need for more research.
“Our hope, like that of everyone affected by this brutal disease including Rob, is that this money will make a real difference and help find the breakthrough we all desperately want.”
Researchers are now able to apply for a share of the funding, with the criteria that they will be expected to conclude their project within three years and be target driving with set milestones and a credible delivery plan – including a clear route to reach MND patients.
Dr Brian Dickie, director of research development at the MND Association says: “We are so grateful to LifeArc for this generous contribution and are looking forward to working with them to identify projects which have a real chance of making a difference to our community in the coming years.”
Melanie Lee, LifeArc’s chief executive, emphasised that the focus of the new funding is on boosting research around potential treatment options based on the latest understanding of the disease.
“The ambition around stimulating the search for new treatments fits with LifeArc’s approach over the last 25 years to translate early science into health care treatments or diagnostics that can transform patients’ lives,” she says.
“Our partnership with the MND Association is the latest in a series of strategic partnerships that maximise LifeArc’s expertise in translating strong discoveries from the lab into benefitting patients with conditions with few or no effective treatment options.”
What causes a stroke?
Over 100,000 people in the UK suffer a stroke each year, with there currently being around 1.2 million survivors living in the country.
Many people note that despite how common strokes are they remain unaware of what the actual causes of a stroke are.
Depending on which of the two types develops, causes and outcomes can differ.
What both have in common is they restrict blood flow to the brain. This leads to a reduction in the brain’s oxygen levels, which can cause tissue damage.
Here, NR Times breaks down why a stroke may occur and what risk factors there are behind each different type.
What are the different types of stroke?
There are two main types of strokes: ischaemic and hemorrhagic.
Ischemic strokes make up nearly 90 percent of all cases and they materialise when an artery which provides blood and oxygen to the brain becomes blocked.
A hemorrhagic stroke is much less common, but happens when an artery leading to the brain bursts and starts to leak blood around or in the brain.
Causes of an ischaemic stroke
The brain is only able to function properly when its arteries supply it with oxygen-rich blood, meaning any blockages can cause lasting damage.
With a lack of blood flow, the brain is unable to make enough energy to work. If this consists for more than a few minutes, brain cells will begin to die.
This is exactly what happens in an ischaemic stroke, but there are a range of reasons as to why these blockages develop.
One of the main causes is when the arteries around the head narrow, which makes it harder for the blood to pass through.
This can also lead to something called atherosclerosis, which is where substances in the blood (such as fat or cholesterol) stick to the sides of the arteries.
Blood can build up on these deposits, causing a further increase in pressure and a reduction to the brain’s oxygen supply.
There are a number of reasons for these blockages, with the most common ones being around a person’s lifestyle.
For example, smoking can increase the risk of a stroke by up to 50 percent.
This is because nicotine not only narrows the arteries, but it also makes the heart beat faster, causing an increase in blood pressure.
Excessive alcohol intake, obesity and high cholesterol levels are also all listed as major risk factors when it comes to ischaemic strokes.
Problems with the arteries around the heart can also lead to an ischaemic stroke.
Irregular heartbeats, heart attacks and other irregularities around this area can again limit the blood’s oxygen levels.
Causes of a hemorrhagic stroke
Hemorrhagic strokes are most common in people ages 45 to 70, but they affect a lot more younger people than an ischaemic stroke.
These are caused after the arteries around the brain burst and cause bleeding.
Depending on where the artery is can affect the outcome of the hemorrhagic stroke.
If the bleeding occurs within the brain, blood shooting out at high pressure can kill some cells.
Bleeding on the surface increases the pressure in the protective layer between the brain and the skull, potentially causing more cell loss.
This bleeding is normally caused by chronically high blood pressure. In many cases, the increased pressure can cause the arteries to expand and weaken, meaning a split in them is more likely to take place.
A rarer cause of hemorrhagic stroke is where the blood vessels around the brain are connected abnormally, causing further stress on the brain. These are congenital (present at birth) but the reason for their occurrence is currently unknown.
Again, the best way to reduce the risk of an hemorrhagic stroke is to make healthy lifestyle choices.
NHS pilots video service for epilepsy diagnoses
A new clinical video service which supports epilepsy diagnoses and management in the era of coronavirus and beyond has been launched in the UK.
vCreate Neuro allows registered patients and carers to share smartphone-recorded videos of potential seizures or unknown movements with their clinical team via a secure, NHS-trusted system.
The data and footage act as a visual aid to assist clinical teams with rapid precision diagnostics, creating a digitised clinical pathway that minimises the need for face-to-face clinic appointments and invasive tests.
The system is currently being piloted across Scotland and, following its initial success, across England including Great Ormond Street Hospital, Evelina London and Sheffield Children’s Hospital.
The system is available to families who are concerned that they, their child or loved one may be experiencing seizures or unexplained episodes including epilepsy.
Since May 2020, more than 2,000 families have shared over 5,000 videos with their clinical teams across the platform.
Dean MacLeod was referred to the service when her seven-year-old daughter, Olivia, began having unknown movements in May 2020.
Dean uploaded videos of Olivia during these episodes as Olivia’s seizures grew more frequent.
The videos were reviewed by Paediatric Neurology professionals at the Royal Hospital for Children, Glasgow, and, supported with telephone appointments, Olivia was diagnosed with a form of epilepsy and quickly started on treatment.
Speaking about her experience, Dean said: “I’ve found vCreate to be invaluable in Olivia’s journey since she started having seizures last summer.
“We live in a remote location on the Isle of Lewis, Scotland, and we have a very limited paediatric service on the Island. The service has made it easy to access the specialist clinical knowledge needed by sending recordings of various seizure events to the Paediatric Neurology team at Glasgow.
“Since the diagnosis, I have kept in regular contact with the clinical team through the platform, sending videos and typically receiving advice from a Consultant within 24 hours which is fantastic. Between the vCreate service and telephone discussions, our family have not needed to have face-to-face consultations which has been hugely beneficial during the pandemic.”
Professor. Sameer Zuberi, consultant paediatric neurologist at the Royal Hospital for Children, Glasgow, said: “vCreate Neuro has transformed how we use carer-recorded video in our service. We are diagnosing epilepsy more rapidly, preventing misdiagnosis and saving unnecessary investigations. Families feel in more control and better connected to the service.
During the Covid-19 pandemic, many people experiencing seizures and seizure-like episodes, including children, have been unable to see a clinician.
Create Neuro aims to help by empowering patients to use asynchronous video technology for self-management, reducing the need for physical appointments.
Founder Ben Moore said: “We’re passionate about family-forward care, and worked closely with clinical teams, patients and carers to develop the vCreate Neuro service.
“The system aims to improve patient care, reduce the number of clinic investigations – and resulting costs to the NHS – and digitise the patient pathway. We want families to be in control of their healthcare journey and have a direct link to their clinical team despite the pandemic restrictions.”
The vCreate platform has been independently assessed and approved by Information Governance teams in over 100 UK NHS Trusts.
Within the platform, a clinical database is available as a learning resource for clinicians to study seizure types, events, and other symptoms.
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