Following our successful pilot service, we’re delighted to have rolled out a free counselling service for everyone affected by a brain tumour, whether it’s you or a loved one that that’s been diagnosed – as well as if you’ve lost a loved one to a brain tumour.
- Why we launched our counselling service
- Tess’ story
- Simon’s story
- Tanya’s story
- How to self-refer for our counselling service
Why we launched our free counselling service
When you or a loved one is diagnosed with a brain tumour it can often feel like you’ve got nobody to talk to because nobody else could understand what you’re thinking or feeling.
In fact, our Improving Brain Tumour Care surveys found that 41% of respondents had an unmet emotional need following a diagnosis and 91% of people who took part in our Losing Myself report said that a brain tumour diagnosis had affected their emotional or mental health.
Despite this, when we asked the brain tumour community about their experiences with counselling, only 45% of people who responded said they had access to a counselling service.
That’s why in July 2022, we launched a pilot scheme for our free professional counselling service that that ran until January 2023. During this time we referred 164 people for the service and the results were even better than we’d hoped.
- When asked about their overall experience of the counselling service, 100% of people said their experience was either “Good” (15%) or “Very good” (85%)
- When asked if the counselling had made a difference to their emotional well-being and ability to cope, 75% of people answered either “Yes, completely” (19%) or “Quite a lot” (56%)
- When asked how likely they were to take any action or do something differently as a result of the counseling, 89% answered either “Extremely likely” (37%) or “Likely” (52%)
- When asked if they would recommend the service to other people affected by a brain tumour, 100% of people answered “Yes”.
Now we’re expanding the pilot scheme. This means anybody affected by a brain tumour diagnosis can refer themselves for the service and access up to eight counselling sessions via webcam or phone.
As we prepared to expand beyond the pilot scheme, we spoke to three people who’d accessed the service about their experiences.
Tess, from Leicestershire, was used to juggling family life with her demanding job as a Curriculum Manager in a school for autistic children. She also ran a youth club in her spare time. For several months, she assumed any strange symptoms she had started to experience were a result of her busy lifestyle. Tess, 57, said:
“Looking back I did have symptoms. I was feeling tired – a lot, and suddenly then I found I was needing ten hours’ sleep a night. Which wasn’t normal for me. Sometimes I couldn’t remember words or names. I’ve always been quite clumsy, and that was also getting worse. But I’ve always had a busy life. I thought, I must just be getting older. I put it down to that.”
Then, seemingly out of the blue, Tess had what was later diagnosed as a likely complex partial seizure in her office at work. Tess said:
“I was working on my own, so no one saw what happened. From what I can remember, it was a weird, dream-like experience. It was quite bizarre – it felt like I was time-travelling.
“And I didn’t fully realise what had happened until, after I came to, I took my lunch and went to sit down in the dining room, and looked around and saw that on no-one else was there. When I looked at the clock, I realized with shock that somehow I had lost half an hour.”
Tess managed to alert a colleague, who thought she might be in anaphylactic shock. An ambulance was called, but on being told that there would be a wait of two hours, Tess’s son drove her to A&E at Leicester Royal Infirmary. Tess said:
“I consider myself blessed that my diagnosis happened very quickly. The staff I saw at A&E knew at once that something serious was wrong. They gave me a cup of water and I knocked it onto the floor by accident. When I explained to the doctor what had happened, I remember saying, “I’m so sorry. These days I can’t seem to hold onto a plate or cup”, and then, after he asked me to explain exactly what had happened, he said, “I think we need to scan your head.”
“It was very quick. I arrived in hospital at around 3pm. By 8pm, I’d had my scan and they knew it was a brain tumour. Then I was referred to the Neurological Team at Queens Medical Centre, Nottingham.”
Tess was diagnosed with a likely meningioma tumour, which was confirmed post op as a Meningioma – Grade Two. The news understandably stirred up all sorts of emotions, as her father had died of a brain tumour years before. But Tess resolved not to panic. She said:
“We’re a very pragmatic family and once I knew what it was, I thought to myself, I need to take things one step at a time. But due to the speed of everything, it was still a surreal experience. I was operated on very shortly after, and the operation was very successful. I consider myself very lucky.
“However, in many ways, the hardest bit was to come after the operation. You think when you’ve got through that, you’re ok – you are relieved to have a good prognosis. You can just get on with life again. But that isn’t what happens.
“I’ve always been a very active, on-top-of-it person, but suddenly, you can’t do anything. You’re no longer in control. Everything’s taken away from you. You’re not only dealing with your physical recovery, but with a whole new way of living.”
How our free counselling service helped
In the months following her diagnosis, Tess found herself dealing with severe mental and physical fatigue, and struggled with her mental health. She experienced severe anxiety, as well as panic attacks which began when she was in hospital. Unable to drive, she was isolated and cut off from her usual activities, and being able to return to work, which she had assumed she would be able to do quite quickly, looked like a long way off. Understandably, this took a huge toll. It was the impact on her mental health which led her to think about counselling. But having always been the one her friends and family could call on in a crisis, she found it hard to ask for help. Tess said:
“It was a very long journey and a very big step for me to get counselling, because in my life, I’ve never needed to ask anyone for help. For me, asking for help was such a big thing.
“People have told me that I’m a good listener, and now the roles were reversed. At points since my diagnosis I have felt very low, and I’ve never experienced anything like it in my life. There were moments, especially approaching the one year anniversary of my diagnosis, when I couldn’t see how life was going to be normal again.
“In the end I told myself to go for it and said to myself, what have I got to lose. But I sat looking at my phone for ages. It took me a long time to have the courage to call.
“I had no idea what I was going to say when I made the call. When the lady answered the phone I just said in tears: “I’ve had a brain tumour and I’m really struggling at the moment.”
However, Tess was delighted that she had phoned – because that call for help led to her being able to access our free counselling service.
“I definitely felt like a weight was lifted after each session. Knowing you had a trusted person to share freely with was so important and beneficial to me.
“The fact that the sessions were free also made a huge difference. This was a big step for me to seek the help I needed and agree to counselling as I have never had it before. I think the fact they were free prompted me to just “go for it.” Thank goodness I did! I would never have known what a difference they would make.
“I liked the telephone medium as this involved much less sensory processing. This meant I was able to really focus and concentrate on the conversation.
“The lady I spoke to was fantastic. It was really good to talk to someone where I could say exactly how I felt. Sometimes the people best placed to help us are not the ones closest to us. It was brilliant to say how I felt about everything, even if it felt irrational, without being judged. And then to be helped how to start processing all those difficult thoughts and feelings.
“To anyone, like me, not sure about asking for help – I would say,” Just do it.” I liken it to someone about to do a bungee jump. Do it before thinking too much about it! Take the leap and be brave – go past that point of no return.
“The sessions helped me to process my feelings. I think it really helped me to come to terms with and accept what I’m going through. It helped make me stronger in facing the rest of the journey.”
Simon, 59, from Liverpool, lost his wife Sarah to a brain tumour last year. Even though he was struggling with his grief, he would never have thought of seeking help for himself. That was until he was introduced to our free counselling service. by a friend, Clare. Simon said:
“I was always of the mind that counselling was not for me. Being a man of my age meant that I didn’t talk about my feelings or show emotions. It just wasn’t the way I was brought up by my parents. Just man up and deal with it was the way of thinking.”
“When I did decide to go for it, self-referring was very quick, easy and professional. I initially made contact via a web form, and received a phone call within an hour. The initial assessment was arranged within days and after being accepted, the first session again was within days. I am sure if I had asked my GP for help I would still be waiting.”
How our free counselling service helped
Simon opted for four counselling sessions which were delivered via video call. He was surprised by how quickly he noticed an effect. He said:
“I was absolutely amazed that even after the second session I was feeling in a much better place, still teary at times but could deal with it much better.
“It was good to talk to someone who was detached from the situation I was in, but who knew how I was feeling.
“They helped by telling me it was “normal” to be feeling how I was, and that I had to grieve and let it out. This allowed me to cope with my teary moments by just telling myself it was ok – rather than get annoyed at myself for not coping.”
Now his counselling sessions have finished, Simon credits them with making a huge difference to him, delivering a lasting benefit. So much so, that he wouldn’t hesitate to recommend our free counselling service to others.
“Now I’m able to talk about Sarah and what happened in a much more rational way. It still upsets me but I am able to deal with the emotion in a new way as I know it’s not wrong to feel the way I do.
“I would definitely recommend the service to others. It’s the best thing I could have done and I wish I’d done it sooner, to be honest.”
Tanya Thomas, an English teacher from Morecambe, Lancashire, was diagnosed with a brain tumour in 2020 – having first noticed something strange symptoms in the summer of 2019. Her left foot had begun to drag when walking and swimming, and a few weeks later, she started tripping up stairs.
Her GP diagnosed “drop foot” and referred her for physio, but things did not improve. Tanya said:
“Over the next few weeks, the foot dragging became more pronounced and I also noticed that I seemed more stressed – forgetting information for my job that I had known for years, forgetting words and their meanings. As an English teacher, I was probably more acutely aware of this deficit.”
In early January 2020, Tanya saw a musculo-skeletal specialist who referred her for an MRI. As well as the memory lapses, she was now aware of a weakness in her left arm. Before her MRI appointment came through, however, Tanya had a disconcerting visual disturbance while teaching an A level class. Tanya said:
“It was as if my field of vision was sliced through diagonally and the right side of the cut slid away from me. At the same time, I fell to my left, almost off my chair. But then my vision righted itself, and I carried on teaching. My left arm, though, felt really heavy.”
Deciding not to stay for an after-school staff meeting, Tanya contacted the specialist, James, she had seen the week before. He advised her to go straight to A&E, and to tell them he suspected a small stroke, and to ask for a head scan immediately. Tanya said:
“Fast forward seven hours and another wonderful NHS worker, this time a junior doctor, held my hand and told me that the CT had shown a ‘mass lesion’.”
Tanya was diagnosed with an atypical meningioma of the right parietal lobe – “an impressively sized one!” she said.
Dealing with diagnosis and treatment
Tanya underwent a craniotomy in March 2020. Her operation and post-operative care went smoothly, and she felt lucky to have received her surgery before the Covid 19 lockdown properly set in – but after the operation, things quickly started to go wrong. Tanya said:
“I had been given a two-week sick note – I felt that I would need longer than that! My left-sided weakness was worse post-op than it had been before – but there was no referral for physio. I was told to report to my GP to have my stitches out ten days later, but my GP had no record of my operation. I had thought I would need another scan at some point, but didn’t know when.”
In the months that followed, coping with regular scan dates, and chasing scan results – which sometimes took several months to arrive – became a big problem.
“I was getting very tense leading up to a scan date. I found myself increasingly stressed, worried and difficult to live with whilst waiting for my results. Contacting PALs has helped but I was so angry that I had to, repeatedly, go through the liaison services to find out what my results were.”
Although Tanya returned to her job as Head of Faculty in a secondary school, she found it was taking all of her energies and leaving her permanently exhausted. After a year, she made the difficult decision to step down from the job she loved and take up a part-time role, so she could better manage her recovery. Her marriage has also come to an end during this time. Tanya said:
“It has been difficult to know how much, if at all, the tumour has affected our marriage. But it has certainly added to the stresses and strains of family life to be dealing with a brain tumour at the same time.”
How our free counselling service helped
Tanya was aware of how valuable talking therapies could be, having had experience of counselling when she was younger. She was on a nine month waiting list for support from her local health services when she was offered a place on our counselling service pilot.
Tanya opted for six counselling sessions and chose to receive them on the phone. Although she expected them to have a positive impact, she was surprised by how beneficial they proved to be.
“My counsellor was keen to understand my diagnosis and explored with me so many aspects of my life – it allowed me to see how all-consuming my diagnosis had become and how the uncertainties of my regular scans was having an impact on everything.
“Everything I said was heard, and considered, and reflected on. Potential solutions were offered beyond platitudes, or ‘I don’t know what to say’ – and I hadn’t realised how much I had needed the support until it was available in such a kind and caring space.
“The counselling also allowed me to consider this huge change I had made to my work life, my career. The strategies I have learnt through counselling are helping me to navigate my new role.“
“By the end of the six sessions, as well as knowing that talking everything through was a huge help, I had a veritable toolkit of strategies that could – and have – helped me manage negative emotions and damaging thought patterns.
“My own experience of the service has been transformational. I am so pleased that The Brain Tumour Charity are in a position to offer this service.”
How to self refer for our free counselling service
We offer up to eight free counselling sessions to anyone diagnosed with a brain tumour or their loved ones. This is a remote service, offering free online counselling sessions via webcam, or over the telephone.
To access our free counselling service, you’ll need to complete the self-referral form on our website. By doing this you can book yourself in for an Initial Assessment with a member of our Support Team. The assessment will help us to understand your needs and what support you are looking for. If suitable, you will then be matched to an available and appropriate counsellor for you.