independent

The Loss Foundation

Apocalypto by Funky64

A psychologist’s story of how she set up a much-needed support network for those in a state of bereavement

Dr Erin Hope Thompson

Six years ago, I lost my father to cancer. He was given three months to live from diagnosis but fought for 26 months before he passed away. During his illness I was doing my undergraduate degree at university, and I was struck by the difficulty of wanting to spend all my time with him and him wanting me to keep life as “normal” as possible and to do well at university.

My stepmother was his main carer and I would share the responsibility where he would let me, which would mainly be taking him to treatment appointments. I spent my time around him being openly positive and hopeful. I could not fathom a life without him in it. I wanted him better, to aid his recovery and see him survive the deadly disease. This was not what happened. After he died, I was absorbed by shock and numbness, which was followed by a deep depression. I felt disbelief and a huge hole in my soul seemed to open up. I lost my role model, and it felt like I had lost a part of myself in the process. During his illness, there had been no time to process the whole cancer experience, no time to think, and now I was bulldozed with the reality of it all.

Afterwards there was a massive empty space in my life. I was overwhelmed by pervasive sadness and loneliness. Not only had I lost my father, but all that had been happening around him had gone too – the appointments, the fight, the purpose. On top of that, hospital staff did not provide anything tangible to support me away from the building and into a new life. All I was given was a leaflet explaining the process of grieving. It was hopelessly inadequate. I’d witnessed the death of my father after years of devastating treatments, which often seemed to me to be worse than the disease. I felt angry.

Differing needs and the search for help
I saw a counsellor, but at that stage, she was not the person I wanted to help me. I felt there was nothing that I could grab hold of to help me deal with the awful thoughts and feelings in my mind. My stepmother felt similarly, but she was clearer about what she wanted after Dad died. She wanted to speak with others who had lost their soul-mate to cancer, to learn about how they got through the day. She wanted a peer group of grievers who would understand what she was going through. Her need for support became my new focus. It gave me the chance to avoid the awfulness of death and grief and I delayed my grief for another five years. Murray Parkes describes this as ‘chronic grief’ or ‘atypical grief’ (Parkes, 1998:108 – 111), which can lead to many different types of unpleasant conditions such as panic attacks, insomnia and persistent feelings of guilt. After Dad’s funeral, which initially gave me a focus, everybody went back to their ordinary routines and I felt forced to do the same. I was left feeling that there was nowhere for me to grieve. I secured a job the week my father passed away and this acted as a very timely distraction for me. It helped me avoid the pain I felt from the gaping hole in my existence, and the memories of my father unable to walk and in pain, and of course the memory of him taking his last breaths. I retreated from my social life and partner and became isolated. I avoided the reality at all costs. It was clear that I needed help but it is only more recently that I recognised that I needed to attend to my grief and not ignore it any longer. And in recognising this, I see similar symptoms in the people who I now work with who are grieving.

Existing support
The bereavement support that currently exists in this country tends to fall into two categories – support from hospices and individual bereavement support. Hospices offer bereavement counselling that varies in how it is run, but this is only available to the families of their inpatients in the immediate aftermath of their loss and is also time limited. People can seek individual bereavement counselling via their GP, but again, on the UK NHS, this is time-limited and on an individual basis only. As well as this, there are usually long waiting lists before you get to see a counsellor. Whilst these two options are good, they are patently inadequate and a huge proportion of the general public are left alone to deal with their grief.

Loss image 1Setting up the charity
In 2010, two years after my father’s death, with the help of colleagues and friends, and funding from a small grant from the Macmillan charity, I piloted a local bereavement support group in the community for people who had lost loved ones to cancer. The group became overpopulated and we opened another. Four years down the line and we are now a registered charity specialising in providing bereavement support for those who lose loved ones to cancer. The charity is called The Loss Foundation.

The charity now runs a support group in N. London, S. London and is about to set one up in E. London and one in Oxford. Attendees meet and share with others who have experienced a loss through cancer. What makes The Loss Foundation different is that, currently, it addresses the needs of a specific group of people. These people have lost someone not just through a fatal disease, but also they have borne witness to kinds of treatments that can be as bad as, or worse than, seeing them suffer with the disease. The Loss Foundation also differs from other providers for grief in that it is free of charge and not time-limited.

Sharing their personal experiences with others has proved to be cathartic for attendees; moreover, having that common theme seems to engage attendees in sharing. The group members often express how alone they have felt, how abnormal they sometimes feel and wonder if these feelings are wrong. Being with others who also feel this way helps to normalise their suffering, and in sharing it, a shared humanity seems to arise.

Meeting structure
The meetings are not formal therapy. They are facilitated by two or more facilitators for the two hour duration. The facilitators’ role is to make sure that everyone who wants to speak gets an opportunity to do so, but the sessions are very much run by the attendees. People arrive in the many varied conditions of bereavement – shocked, angry, disbelieving and distraught. People apologise for their grief and their tears as if they have no rights to impose this on others. Sometimes people laugh at happy memories. I see their journey, the process moving up a notch, then down again, one step forward, two steps back. Some are frustrated with their process and blame themselves – “I felt better last month. I’m worse today. What am I doing wrong?”

Learning about grief is something we all have to go through, as our lives are beset with losses and often we don’t know how to deal with them, have not been taught how to deal with them. For instance, John Bowlby explains the unexpected anger of the bereaved at the lost person:

‘Whenever loss is permanent, as it is after bereavement, anger and aggressive behaviour are necessarily without function…. a bereaved person usually does not believe that the loss can be really permanent… the lost person is not infrequently held to be at least in part responsible for what has happened, in fact to have deserted. As a result, anger comes to be directed against the lost person, as well as, of course, against any others….’ (Bowlby, 1998:287).

Enabling someone to be angry about their loss helps to diffuse the energy of it and points them on their way to recovery.

The need for some formality
In The Loss Foundation support groups, we have some rules:
– there are no ‘shoulds’ (eg “I should be feeling better by now”)
– all phones must be turned off
– all attendees are expected to respect others’ different experiences
– all attendees must keep any personal information they hear confidential.

We have found that the more rules we set, the better formed are the groups and members feel safer. There are no expectations of attendees – they are welcome to talk, but they do not have to. Some will still be in shock and will take their time to open up, but most have come to talk, needing to share their story or to discuss their particular and current issue about grieving, to get reassurance that they are not going crazy.

Loss image 2Early days
During the first year of running the groups, I experienced a flurry of emotions. I was so keen to provide a source of support and solace for people and found myself often nervous about finding the ‘right’ thing to say or offer. I would be nervous for the day of the sessions and find my heart racing at the start of them. In retrospect my nervousness came out of the personal side to this story – I so wanted the legacy coming out of my father’s death to work. However, I soon learned, from running the groups and being around so many people grieving, that there is no right thing to say that makes things better and that the crux of our success was purely in relation to simply providing a space for people to be with their grief, a space to just be as they feel without any need to mask their true feelings.

Dealing with raw emotions
Even in my work as a clinical psychologist I have never seen such sadness and surrender to emotion as I have in these groups. There were times when I too could not ignore the sadness and pain that was sometimes tangible. Often, I found myself sombre after a session. This made our peer supervision and debriefing after every session so pivotal. However, the feeling I got most during and after sessions was one of elation, because I have never been more humbled than to see people in pain from their loss reaching out a hand to support others through their loss, knowing that this is one step nearer to their healing.

Freedom to grieve
From running these groups and being around so many people who are grieving, I have learned a lot about death, bereavement, and about myself. I have learned that bereavement is something people have a lifelong relationship with and that it evolves over time. When I think about my Dad now, it is with sadness and longing, but also with pride for the source of support that was born out of it for others. I am also ready and willing to fight the taboo surrounding discussion about death and bereavement. There seems to be shame about showing feelings in relation to a loss and people try to brave it out. We have seen the effects of this kind of suppression in our group members and many of them apologise for their grief. As a consequence we try to work towards creating a world where people never apologise for their grief.

The charity was born out of personal experience, but loss through cancer is a universal problem. The statistics about cancer are staggering:

• Approximately 890 people are diagnosed with cancer every day.
• 1 in 3 people will develop some form of cancer in their lifetime.
• In 2010, in the UK alone, 430 people died from cancer every day…. that’s one person every four minutes.
• Research has shown that the average person leaves behind 15 close loved ones.
• Put into context, approximately 6,450 people will be bereaved by cancer in the UK each day.
• In London alone there are 13,500 cancer-related deaths every year. That equates to 202,500 people left behind each year.
(Cancer Research UK, 2010)

Web support for adults and children
Most commonly people access support from The Loss Foundation in the early months following their loss. Most attend regularly for up to a year, after which attendance is more sporadic. Since 2010, over 300 people have now benefited from in-person support. In August 2014 we launched a new website which not only provides practical information on support available across London, but also acts as a portal for anyone experiencing bereavement. Our website provides information on problems associated with bereavement such as insomnia, nightmares, anxiety and panic attacks. Enquiries arrive mostly via Google, but we often receive recommendations from hospices and cancer support centres. The youngest attendee to date was 14 years of age who came along with members of his family and the oldest to date was 80 years of age. We consider ourselves a charity that supports adults, and recommend that children access the support of children’s charities such as Cancer Connections (http://www.cancerconnections.org.uk)

It is difficult for us to measure our groups’ success on a quantitative level. However, on a qualitative level, the results are much more compelling.

Loss image 3Case study
‘Mark’ lost his wife of 40 years to cancer in February 2013. He attended our north London support group for the first time the following month on the recommendation of his GP. He was very quiet and introverted. His pain was visible. Mark knew he was not coping well mentally. He was not sleeping, had stopped going to work as he could not concentrate and he had developed a bad back. He disclosed regular flashbacks to the moment his wife died and other tragic incidents prior to her passing. The group psychologist suggested he speak to his GP about trauma counselling and a group member talked about the benefits they had from acupuncture under similar circumstances. They also discussed some books on bereavement that they had found helpful and that he borrow them from the support group’s library. Mark was highly sceptical. However, he trusted the people sufficiently to give it all a try. Discussions within the group made him realise that grief could impact physically as well as emotionally, hence his bad back. He attended the support groups every month in north and south London. At the support group in south London a few months later, an individual who had been present only at Mark’s first visit commented on how much he’d changed. Mark said his transformation was due to the help he received from groups on a number of levels – having a space to grieve, access to support and advice from others in a similar position to himself and the recommendation from the group psychologist for trauma counselling. Without the support, Mark’s experience of grief could have been very different. Instead the journey of his grieving and support received has enabled him to be present with his pain and his loss and helped him avoid avoiding.

Endorsements
Over the last three years, we have collected quotes from participants. Here are a select few:

“Being in a safe and friendly environment with others who have experienced loss is incredibly beneficial.”

“Just being in a room with people who understand creates a very deep and subtle empathy, without people realising they are doing it.”

“Knowing that there is something there is enormously reassuring.”

“I spent weeks phoning around London hospitals and bereavement centres but could not access a group like this – one that simply brings people together to share their stories of loss in an intimate, informal, and accepting context.”

“ This group has given me more relief, release, and comfort than anything else since my wife passed away.”

Annual retreat
We have noticed that attendees want to create friendships and connect in more informal ways. This was also highlighted at the first annual bereavement retreat weekend, which we held in 2013. Attendees found time to take meals and relax together, share and cry together, take country walks and even manage to laugh together. Following the success of the retreat, the charity has been arranging monthly social events on weekend mornings. Feedback has shown that these events have tackled some of the social isolation experienced when grieving.

We have also found that the pattern of grief is much more of a rollercoaster than described by some theorists. Kubler-Ross and Kessler (2005), for example, describe a linear development during which each person goes through one stage after another over the years after bereavement. We have found the opposite to be true. Our attendees have shown a much more irregular pattern when grieving and while some seem to recover quickly, relapses are common; desperation and loneliness can hit at any stage.
Running the support groups has been among the most humbling experiences of my life. It took me so long to recognise my need to address my own grief and I believe that setting up The Loss Foundation was a way of addressing that. It was a way out of my dilemma of not being able to face my own grief while, at the same time, helping others to face theirs. I feel I had gone through a similar experience to the attendees and this experience aided my understanding of theirs. Is this not the story of the wounded healer?

Dr Erin Hope Thompson is a clinical psychologist based in London. She completed her clinical psychology doctoral qualification at UCL, which is accredited by the UK’s Health and Care Professions Council (HCPC) and the British Psychological Society (BPS).
During her training Thompson developed the skills, knowledge and values to create working alliances with people with mental health difficulties in order to carry out psychological assessments, develop formulations based on psychological theories and to carry out psychological interventions

References
Bowlby, J (1998) Separation, Anger and Anxiety. London: Pimlico Publications
Cancer Research UK (2010). Cancer Mortality for all Cancers Combined. http://www.cancerresearchuk.org/cancer-info/cancerstats/mortality/all-cancers-combined/#UK
Kübler-Ross, E, & Kessler, D, (2005) On grief and grieving. Finding the Meaning of Grief Through the Five Stages of Loss. London: Simon & Schuster
Murray Parkes, C, (1998) Bereavement – Studies of grief in adult life. London: Penguin Books

Website:
The Centre for the Grief Journey (2013) Click on Laughter is Healthy
More information about The Loss Foundation can be accessed at
www.thelossfoundation.org
Note: The Loss Foundation is free of charge for attendees; only the annual bereavement retreat weekend asks for a fee. The charity is a non-profit organisation funded by grants (80%) and by donations (20%). Fundraising activities are chosen by the team of people running the charity or by beneficiaries of the charity.

Image: Apocalypto by Luca Rossato