‘We’re all fighting the same battle, with different journeys’
Maggie’s charity opened a new centre at The Royal Marsden in 2019, sitting within the site of The Royal Marsden NHS Foundation Trust. It provides free cancer support, both practically and psychologically, for those who have a diagnosis of cancer as well as their family. The support ranges from the provision of information, stress-reducing strategies, psychological support and the opportunity to meet other people in similar circumstances. Maggie’s professional staff can offer ‘light-touch’ psychologically informed conversations held by their Cancer Support Specialists, a multidisciplinary team of healthcare professionals, to psychological therapies with a clinical psychologist. Support can be individual or part of a group.
I am Kate Fulton, a clinical psychologist for Maggie’s. My work is varied, but commonly I support adjustment to a cancer diagnosis and treatment, tolerating the uncertainty that cancer brings, coping post-treatment with life after cancer and bereavement. I often work with family members of those with a cancer diagnosis. As a relatively new service we have been keen to respond to the needs of our centre visitors and collaborate with the hospital to help identify those needs.
Having previously worked within the NHS, my role at Maggie’s has highlighted the flexibility, autonomy and creativity that third sector working allows. I have been able to prioritise projects that seem most clinically relevant and to manage my caseload accordingly. Alongside these benefits, I have encountered the challenges of working as the only psychologist within the centre team, and being more remotely connected to other psychologists within the organisation than in previous roles.
When the opportunity for cross-sector work with Rachel Trimmer emerged, I was keen to pursue it. Rachel and I trained together, and this relationship supported us in taking the leaps involved in collaborating across services.
I am Rachel Trimmer, a clinical psychologist working in the Paediatric and Teenage Psychological Support Service at the Royal Marsden NHS Foundation Trust. My post is funded by the Royal Marsden Cancer Charity.
Our team is made up of clinical psychologists, a consultant child and adolescent psychiatrist, an art therapist, an assistant psychologist and trainee clinical psychologists. We offer psychological therapy, support and advice to any family member throughout the treatment journey of a child or young person aged under 18 with cancer, from the time of diagnosis, throughout treatment, and after treatment has ended. Patients can self-refer to our service or be referred, with their consent, by another member of their team.
Whilst this is a specialist paediatric role, my work, like Kate’s, is incredibly varied. I work across the lifespan with individuals, couples and whole families. Support from our team ranges from brief pieces of therapeutic work to longer-term psychological interventions. I provide support to many of the same difficulties as Kate, such as adjusting to a diagnosis of cancer, coping with the effects of treatment, and bereavement.
As we are a paediatric and young adult specific team, our work more often involves a focus on factors relating to childhood, parenting and family life. This might involve work with parents around sleep issues, eating difficulties or behavioural difficulties presented by their child that have been impacted by the cancer, or working with a child in developmentally-sensitive ways to support them with the challenges of returning to school after treatment. Our team also offer neuropsychological assessments to children who have had a brain tumour or treatment that may affect the brain.
The parent support group
The idea of a space for parents whose children are on active treatment for cancer came from staff on the paediatric ward in the Oak Centre for Children and Young People. They were noticing that parents were struggling with a lack of social support due to the coronavirus restrictions. However, this was not an uncommon experience for parents of these children before Covid-19. Maggie’s was initially approached by the divisional nurse director to think about provision of support in the form of a group. Keen to avoid overlap with support that the paediatric and young adult psychology team might already be providing, Kate began collaborating with the clinical lead of the service.
Working with parents of children with cancer is something which the paediatric team at The Royal Marsden encounter daily in their clinical work. Whilst it is not the sole focus of a Maggie’s psychologist, the themes of shock, grief, a sense of powerlessness and guilt that parents can experience, were familiar in both our caseloads.
Collaborating with one another to create and run a parent support group came with its challenges though. The paediatric psychological team have a tighter remit in terms of what they offer to the patients and families compared to Maggie’s, so the criteria of the group needed careful thought. Rachel and her team needed to ensure that the group would fit with what their service is commissioned to provide, and that the group would help meet the needs of the families referred to the service, offering a useful additional resource for the team.
At Maggie’s, there is a clear pathway of support leading to psychological input. Typically, anyone who accesses the centre will be seen through the ‘drop-in’ provision which offers low-level psychological support and a referral to psychology groups or individual work will be made as indicated. The principle is that early intervention and open-ended support can prevent a more acute need arising. The idea that as a Maggie’s psychologist, Kate would dedicate a proportion of her clinical time to parents who haven’t engaged with the centre before, is slightly at odds with the model. When we began to discuss the logistics of how to create the group across our services, an initial worry was that our two systems might in fact be incompatible.
However, compromises were made. As previously mentioned, Maggie’s isn’t exclusively there for Royal Marsden patients, but we had to agree that the group would only be open to parents whose children were being treated at the hospital for Rachel to be able to justify her involvement with the group. A question remained at the back of our minds: does collaborating to form this group muddy the waters between our services? Or in some way diminish what each service can provide on its own? There is so often a drive for a service to prove itself, and a natural protectiveness comes over us as clinicians. The dilemmas of who ultimately holds clinical responsibility, and the complexity of two services that are inherently quite different trying to marry up a way of working, are easy problems to become stuck on.
Thankfully, our relationship created a space of openness to air some of these challenges and work through them. By voicing these dilemmas and acknowledging the different positions we were holding from our two services, we were able to provide sound rational for our involvement in the group. Ultimately, the benefits of being able to create a group to meet an identified need outweighed the challenges it posed.
Within the same team, there are typically opportunities to learn about what each psychologist might bring to their clinical work, and how they might approach a group. Coming from different services we hadn’t had those contact points with one another, so we were tentative in the beginning. We both held different experiences and expertise when it came to group facilitation and therapeutic style. Rachel brought more experience of running systemically informed groups and introduced the idea of us taking on facilitator and reflector roles. Kate brought experience of working in psycho-oncology having spent a year in a cancer-specific placement in training and then working full-time in Maggie’s. She had greater experience in online group work so was able to hold in mind how to set up and run the group remotely. Neither of us wanted to take a dominant role or put too much workload or responsibility on the other. Working with another practitioner takes you out of your comfort zone and can feel really exposing. What will they make of my facilitation skills? We acknowledged this worry early on, and negotiated a way of offering one another reassurance as the group progressed. Ultimately, it requires trust and a reliance upon each other that takes time to build.
Working together on recruitment
As most people who have run a group intervention will know, recruitment can be one of the most challenging parts of the process. Collaborating with one another’s services enabled access to a wider pool of potential group members and created opportunities for parents to join who may not have participated had the group been delivered from only one of our services.
The idea of engaging with a psychological support service holds many different meanings for different people; ideas such as psychological support being for people who lack resilience or who are struggling with severe mental illness. The idea of engaging with a psychological support service can also trigger shame or invite stigmatisation from others. These all create barriers to accessing support. A third sector support organisation such as Maggie’s does not carry the same NHS associations and meanings for many people. Maggie’s centres are designed to be a non-clinical space, to feel more like a home, giving us access to physical and virtual spaces that feel less pathologising or stigmatising.
Alongside recruitment from the paediatric team’s waitlist, advertising the parent support group at the Maggie’s centre enabled us to communicate an important message of this being a group relevant and open to all parents of children receiving treatment, not just those who are ‘referred’ to a Psychologist. Perhaps this model of increased accessibility is particularly pertinent in psycho-oncology and supporting parents whose children have cancer. Those seeking support are often ordinary people who find themselves in extraordinary circumstances. Neither of our services prescribe to a particularly diagnostic model, and at the core of our work is often the need to normalise and validate feelings such as anxiety, guilt and grief. In allowing an open recruitment process, we hoped to encourage the normalisation that living amidst your child’s diagnosis and treatment can be hugely challenging for anyone.
Advertising at the Maggie’s centre also enabled several parents to step towards the group themselves, rather than have the idea suggested to them by a Royal Marsden team member. Access to the paediatric team’s waitlist of parents allowed us to speak to a large number of potential group members who had already sought out psychological support, and enabled us to offer them an intervention far sooner than if they were to continue waiting for an individual or family intervention.
Although the need was most definitely there, a further challenge was how these parents would practically find the space and time in their week to attend an eight-week group such as this without their children, particularly in the midst of a global pandemic. Parents can even feel guilty or self-indulgent about accessing support for themselves when the emphasis of care is firmly on their child’s needs. We needed to be flexible, to not put pressure on our participants to attend if they couldn’t, to ‘just try it and see’. These conversations with parents around their hopes and fears were an important part of what John Burnham (in Carmel Flaskas’ 2015 edited collection The space between: experience, context and process in the therapeutic relationship) has called ‘warming the context’, and may have played a crucial role in the zero dropout rate we experienced.
For us, it was significantly easier to share this task across our two different services, offering greater flexibility around when phone calls could be made and committing greater time to supporting them with their dilemmas. Joining forces to offer a shared intervention immediately expanded our capacity and resources for planning, preparation and delivery. Alongside such practical elements, we were also able to use one another to carry motivation and momentum. When one of us was feeling dejected, the other was able to step in. If it had been just one of us holding the responsibility, we may have decided it was too much of an uphill battle from the beginning.
We began to notice parallels between parents’ trepidation about the group and our own. What if hardly anyone turns up? What if the group feels really big? What will the group dynamics be like, especially online? Our experience of working with this population taught us that these worries were likely to be especially pertinent to the parents, who can feel understandably concerned about the impact of hearing other peoples’ stories. Would they encounter less favourable outcomes, or feel guilty if they were in a more hopeful position than others? Others worry about their emotional capacity to hear others’ stories when their own difficult situation feels quite enough to be coping with. One parent said: ‘I was concerned that not having people with the same diagnosis would be an issue. It wasn’t though.’ The sense of a shared experience emerged as representing something far greater and more important. One parent said: ‘[I valued] learning that we are all fighting the same battle but in some ways all have had such different journeys. Learning everyone’s journey has helped me cope with mine.’ Another parent said: ‘It was a space where everyone just got what was going on. People without this in their lives try hard but don’t really know what you’re experiencing.’
The group itself was able to provide a space for the parents to explore the impact of their child’s diagnosis on them as parents and on their relationships and wider lives. They shared the challenges of how the cancer diagnosis had forced changes to how they parented, no longer being able to plan ahead and instead having to tackle things as they arose. This reactive way of living meant that many didn’t feel they were coping, rather that they were ‘surviving’. We noticed many of the group had strong expectations about what they should or shouldn’t be doing or feeling. We used the sessions to uncover the influences behind these ideas, enabling parents to challenge them and re-define what was meant by ‘coping’. This work was particularly helpful when addressing their feelings of guilt; guilt that they were not able to go through cancer treatment in place of their child, guilt at having to consent to and administer medication that made their child feel unwell, guilt at not being as present for their other children and even blaming themselves for not being able to prevent the cancer. By creating a safe space for this guilt to be acknowledged, and then moving towards a more compassionate response to these feelings, we hoped those difficult feelings would take less hold of them over time.
A strong theme throughout was that parents often believed they were the only one feeling or thinking some of these things, exacerbating a sense of isolation and feelings of guilt about not being a good enough cancer parent. Feedback at the end of the group told us that their experiences of hearing that other parents had similar worries and feelings to them and receiving compassionate responses from other parents to their own feelings had some of the greatest impact on their ability to respond more compassionately towards themselves, an experience of connectedness replacing their previous sense of isolation.
It was encouraging to hear from the parents that their differences didn’t diminish their shared experience. Similarly, although as clinicians we might have had trepidations about our different services and indeed our differing therapeutic approaches and perspectives, our experience was that our NHS / third sector collaboration enabled us to combine and consider varying perspectives from which to plan and deliver a group intervention. We were able to maximise the strengths of each of our services, allowing parents faster access to psychological support and bringing greater attention to the wider support Maggie’s can offer as parents such as those in the group continue with their journeys. Clinically, we feel we gave one another permission to create a less structured space for parents to come together and form a community amongst themselves – a space for their stories to be heard and their resilience and coping to be promoted.
We’re left with a couple of key ideas that we feel compelled to share with other clinicians. Firstly, sustaining momentum when setting up a group is hard, and maintaining motivation to work out the kinks that can easily arise when you attempt cross-sector working can add to the challenges. There is always going to be a leap into the unknown when forming a new collaboration, and it can bring about discomfort and anxiety. Despite that, our experience was that it is worth the pay-off and we want to encourage others to take the plunge. The challenges felt easily outweighed by the moral, professional and practical support we were able to provide one another.
Working in this way (a fairly unstructured psychotherapeutic group) with parents who are in the midst of treatment with their child served as a helpful reminder that it’s not all about us as clinicians. There is great power in simply bringing people together, allowing for shared experiences and a formation of a genuine community of support. That’s not to say we were insignificant – we put careful thought and planning into the creation of a safe space – but we didn’t need to provide answers in order for the group to be beneficial. Instead, allowing their voices and stories to be heard and witnessed by one another encouraged the fundamentals of normalising, validating and resilience building, strengthening their coping rather than pathologising their experiences.
The collaboration is one that will continue, with a plan for Maggie’s and the paediatric and young adult psychological support service situated at The Royal Marsden to offer the group to parents throughout the year. Our hope is that this will continue to meet the needs of parents, and strengthen the relationship between our two services.
- Kate Fulton [email protected]
- Rachel Trimmer [email protected]
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