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.’”
Learn more about virtual reality in rehab
Event is an opportunity to hear from expert Dr Katherine Dawson, Consultant Clinical Neuropsychologist.
An event later this month will give neuro-rehab professionals an opportunity to learn more about the use of virtual reality in the field.
The virtual webinar, on 26th January at 1.20pm to 2.30pm, features an in-depth talk by Dr Katherine Dawson, Consultant Clinical Neuropsychologist.
A Guide to Virtual Reality, which can be booked by emailing email@example.com, will cover:
– Growth of digital health
– Virtual Reality(VR) / Telerehabilitation evidence base
– Virtual tour of the Brain Recovery Zone VR platform
– Where does the Brain Recovery Zone sit in a clinical pathway
– Clinical outcomes, case studies, and research trial
Dr. Katherine Dawson has over 15 years experience working in various rehabilitation settings (both within the NHS and private sector) with individuals who have a wide range of neurological conditions.
She has a particular interest in cognitive rehabilitation, and working with individuals and families to manage emotional and behavioural changes following Acquired Brain Injury (ABI).
She is currently involved in research with the NHS regarding ABI and telerehabilitation, and has recently published a book exploring adjustment to brain injury from the perspectives of clients, family members and clinicians.
In December 2017, Katherine set up a local neuro-rehab service (Sphere Rehab) with her business partner, focusing on community integration post ABI. She also co-founded the Brain Recovery Zone neuro rehab Virtual Reality platform in the summer of 2019. The team are commissioned by several local CCGs and also work within the private sector.
Ahead of the event, she said: “I just wanted to say a massive thank you to Think Therapy 1st for inviting me to talk about VR and the Brain Recovery Zone. Virtual Reality has great potential in neuro rehab – both to ‘up’ the dosage of rehab, in addition to promoting ongoing engagement and self management.
“I am really looking forward to delivering this webinar and discussing some of the clinical outcomes including the work completed together with Think Therapy 1st and other clients.”
Helen Merfield, Managing Director, Think Therapy 1st, which is organising the event, said: “I am really excited about our VR event we have used Dr Dawson on a number of cases with amazing results and her VR really has changed lives.
“So much so that we are partnering with her company Sphere as a preferred provider for both VR through Brain Recovery Zone and Clinical and Neuro psychology. Close working ties can only improve outcomes which for both our companies are already impressive.”
To register for the event email firstname.lastname@example.org.
Sport and exercise ‘have key role in mental health and wellbeing’
The Moving for Mental Health report highlights the role of physical activity in supporting mental resilience and recovery
Physical activity and sport can play a key role in supporting mental health and wellbeing and helping people to recover from the ongoing impact of the COVID-19 pandemic, a new report has concluded.
The Moving for Mental Health report includes better training for health professionals to prescribe movement as a means of effectively tackling the vast growth in people experiencing mental health issues.
Produced following the onset of the pandemic, the report sets out evidence that developing a healthy relationship with physical activity and being involved in linked programmatic interventions and social networks is beneficial, can improve people’s mental health and wellbeing, and help tackle social isolation.
The project, by the Sport for Development Coalition and Mind, highlights how COVID-19 has exposed the weaknesses of single-sector responses to addressing complex mental health problems and tackling growing health inequalities.
The report recommends physical activity and community sport be further embedded in health policy and integrated care systems while calling for an enhanced role for experts by experience and diverse communities leading in the design, implementation and evaluation of future strategy and programming.
Launched at an online meeting of the All-Party Parliamentary Group for Sport, it is also designed to support and inspire public bodies, funders, commissioners and policy-makers as well as community-based programme providers aiming to enhance the impact of movement for mental health.
Paul Farmer, chief executive of Mind, said: “While Mind’s research suggests that half of adults and young people have relied on physical activity to cope during the pandemic, we also know that physical activity levels for people with long-term health conditions, including mental health problems, have declined.
“Considering how vital physical activity is for many people’s mental health, it is clear that we need a collective effort to reach those who need support the most.”
Andy Reed, chair of the Sport for Development Coalition, said: “This report is aimed at supporting and informing policy-makers about how we can maximise the contribution of targeted sport and physical activity-based interventions at this crucial time.”
The research was led by a team of academic researchers from Edge Hill University and Loughborough University, and draws on evidence and submissions from over 70 organisations including sport and mental health organisations, public bodies and Government departments.
Andy Smith, professor of sport and physical activity at Edge Hill University, said: “The impact of Covid-19 on people’s mental health and wellbeing cannot be overstated.
“It has brought to light the significant mental health inequalities which existed prior to COVID-19, but which have since worsened further, especially among those living in under-served and low-income communities.
“Our research is calling on the Government and other public bodies to invest in the provision of movement opportunities for mental health across multiple policy sectors, and to use the evidence presented as a basis for making more effective policy decisions which benefit everyone’s mental health and which tackle deep-seated inequalities.”
Moving for Mental Health is the first policy report in a series being published throughout 2022 by the Coalition and relevant partners. The reports are aimed at maximising the contribution of targeted sport-based interventions to helping ‘level up’ communities facing disadvantage and deprivation and tackling deep-seated health and societal inequalities which have been exacerbated by COVID-19.
Calvert Trust announces new trustees
Louise Dunn, Judith Gate, Emily Flynn and Victoria Notman bring their expertise to the Trust, which also runs Calvert Reconnections
The Lake District Calvert Trust (LDCT), which runs brain injury rehabilitation centre Calvert Reconnections, has started 2022 by announcing the appointment of four new trustees.
Louise Dunn, Judith Gate, Emily Flynn and Victoria Notman will bring their respective expertise to supporting the further development of the charity and its vital services.
Louise Dunn is a communications consultant and academic with over 25 years’ experience of management and leadership roles in the pharmaceutical industry and at Alder Hey Children’s NHS Foundation Trust and Charity.
Commenting on her appointment, Louise said: “As a Keswick resident, I’m delighted to be able to get involved with this extraordinary organisation, that has such a positive impact for people living with disabilities in our community and all over the UK.
“I am looking forward to learning more about how I can help the team and contributing to their exciting plans for the future.”
Judith Gate has extensive experience in the charity and public sectors including leading the volunteering and customer care functions for a national charity.
She currently leads a continuous improvement programme with a focus on delivering efficiency and improved customer experience through business process improvement and digital transformation.
Judith said: “I applied to be trustee because I wanted to use my skills to deliver as much positive impact as possible. As an outdoor enthusiast I feel a genuine connection to the Calvert Trust‘s mission of making outdoor activity accessible to everyone
“I am really excited to join the board and look forward to using my knowledge and experience to help support the Trust achieve its ambitions over the coming years.”
Emily Flynn has over 21 years’ experience as a military officer and communications-electronics engineer across a wide spectrum of business areas including: senior leadership/board-level management; digital optimisation; resource planning; engineering, operations and risk management; trusteeship; and mountaineering leadership.
Commenting on her appointment, Emily said: “I am delighted to become a trustee of the Lake District Calvert Trust.
“The military introduced me to the benefits of outdoor education as a means of expanding personal confidence and stretching comfort zones in a controlled environment. It also led me to become a mountaineer.
“I hope to be able to bring my previous experience as a leader, mountaineer, engineer and trustee to help the Calvert Trust
continue to deliver amazing outdoor education to its participants and to help it grow over the next few years.”
Victoria Notman is legal director at the employment team at Burnetts Solicitors in Carlisle and has over 20 years’ experience as an employment lawyer.
She also has a first-class honours degree in physiotherapy and experience in the rehabilitation and development of adults and young people with mild to severe physical and mental impairments and learning needs.
Victoria said: “I am looking forward to applying my knowledge and skills to become integrated into the fabric of the Trust to such a degree that all the experience I have to offer can really make a difference to the lives and happiness of those accessing Calvert Lakes and Calvert Reconnections.”
Welcoming the charity’s new trustees, Giles Mounsey-Heysham, chairman of the LDCT Trustees, said: “After a detailed recruitment process, we are delighted to welcome our new Trustees.
“Together they bring a wealth of skills, experience and shared passion to the Lake District Calvert Trust. We welcome their contributions moving forward.”
The Lake District Calvert Trust has been supporting people with disabilities from its specialist Calvert Lakes residential centre and accessible riding centre near Keswick in the Lake District for almost 45 years.
Calvert Lakes has grown from being the UK’s first dedicated activity centre for people with disabilities, to welcoming around 3,500 visitors to stay each year.
These include individuals, family groups, specialist schools, accessible sports clubs, disability charity groups, supported living organisations and care homes across the UK.
Last year, the charity also opened Calvert Reconnections, the UK’s first residential brain injury rehabilitation programme combining traditional clinical therapies with physical activity in the outdoors.
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