Wednesday 27th July 2022
A diagnosis can help make sense of frightening, overwhelming or confusing thoughts and feelings and make access to support easier. Getting the right diagnosis can lead to referrals to helpful professional treatment. Anecdotal feedback suggests traumatic histories are overlooked, and symptoms such as depression and anxiety medicated rather than explored.
This month (July 2022), we asked our Community Bubble focus group of mental health workers, clinicians and service users for their thoughts on why it’s so difficult to get a Complex PTSD diagnosis.
Here’s a snapshot of what they said.
Reproduced with kind permission of the panellists.
Severely traumatised people are being let down at the first hurdle, that first meeting with a counsellor or therapist, who simply lack the tools to communicate with them, said panel members.
‘With PTSD on its own, it’s hard enough to find someone who’ll understand what the hell you’re talking about,’ said Carl, who believes he has Complex PTSD, but has been diagnosed with Acute PTSD.
In Rotherham, 1,400 young girls were abused over a period of 16 years, groomed and exploited by gangs, disbelieved until it was too late and the damage had been done. ‘No one wanted to talk to them about it,’ said Mark.
Young people don’t (on the whole) want to engage with mental health professionals, they don’t want to talk to them, added Carl. ‘If you’ve got them in the [consulting] room for an hour, it might be the one hour of the day that they’re all right. They might not talk. If you’ve got a mental health professional who can’t, and won’t, attempt to communicate with the young person, then that’s another young person that gets lost.’
Underlying the difficulty of getting a Complex PTSD diagnosis is the one-size-fits-all approach to therapy offered by the NHS, chimed our panel. Nearly everyone is offered Cognitive Behavioural Therapy (CBT) which is focused on the present, whereas the kinds of trauma leading to intrusive thoughts, dissociative disorders, triggers and flashbacks, are rooted in the past, requiring years of investigation and psychodynamic therapy. And this is simply too costly, and inconvenient, said clinical psychologist Rafida Alhagiali. Staff morale is low, impacting service delivery to some of society’s most vulnerable.
Professionals need to make a distinction between past and present behaviour, because if they don’t, that’s another barrier to the therapeutic alliance, another reason not to trust them.
The scale of the impact of complex trauma in society, the hidden impact of childhood abuse and neglect, and other prolonged disruptions to healthy psychological development, is only just beginning to come to light. It’s a global issue, requiring a global solution.
Monday 11th July 2022
The Survivors Hub Project is aimed at supporting women who grew up in an atmosphere of domestic abuse/trauma, who may have suffered further victimisation as an adult.
The sessions, led by a clinician and trained peer facilitator, will combine peer support with clinical information and holistic symptom management skills. It is hoped that attendance will reduce anxiety for people on long NHS waiting lists for trauma therapy, who cannot afford private treatment. The series could also help people who have exited a rehabilitation programme and wanting ongoing support.
The sessions will be held on Zoom as Recovery Code X's research shows most women prefer the anonymity, being in the comfort of their own home, not having to travel, and saving on childcare.
The goal is to build a new virtual community that can survive any future restrictions on gatherings, providing a reassuring sense of continuity.
Details of how to register will be posted on the Recovery Code X website soon.
Project Manager, Anna Bragga, said:
‘We’re looking at setting up public talks in faith and community centre settings to help spread the word to BAME groups and help remove cultural barriers, demonstrate that we are open to honour-based faiths. Complex PTSD can touch anyone exposed to domestic violence, and we want to be as inclusive as possible.'
Wednesday 15th June 2022
Emma Jaynes, director of the Central Beds-based Adept Living Foundation, spoke candidly about her own previous battles with alcoholism. She said, ‘from an emotional and psychological needs perspective, spirituality is a fundamental human need, essential to coping with life’s stresses. I came back to spirituality via the 12 Steps of the AA. I’ve been through many different phases.’
Spirituality is synonymous with religion to many people, but to our panel it meant a connection to God.
Resilience and well-being coach, Sorrel Pindar, who yesterday (13th June 2022) gave a public talk about ‘finding peace in difficult times’, in the Arcade’s Hippy Wytch Emporium, said: ‘The thing that made the biggest difference to me was understanding that I am God. We are all God. We’re not separate from God. And because we’re all God we have unlimited healing potential.’
The belief in a higher power and having an inner spiritual framework can have life-changing consequences, commented another member of the panel. It's about taking responsibility for your recovery. It gives you a reason to get up in the morning.
Vanya Paterson, a qualified counsellor and natural empath training as a Deep Memory Process (DMP) regression therapist, said she wouldn’t have experienced recovery from childhood trauma without spirituality: ‘My connection with God deepened,” she says. 'It’s definitely an inner thing.'
The Community Bubble launched on 16th December 2021 and meets monthly on Zoom to discuss topical issues of concern to service-users and mental health professionals.
Friday 29th April 2022
We hosted a discussion involving people from different backgrounds with three things in common: they’d all struggled with severe mental health challenges and sought help from the NHS, and all had been Bedfordshire residents.
“I’ll never change, I’ll always be medicated,” announced Carl, who has been diagnosed with acute PTSD. The former drug user said he’d been in recovery for nine years, and managing it was key.
The notion of ‘being in recovery’ has its roots in the psychiatric survivor movement of the 1960s around the time of Health Minister, Enoch Powell’s, announcement of the closure of the asylums. People share their stories to highlight their strengths and experiences.
The Recovery Model puts the onus on the person who has experienced the trauma/abuse to take responsibility for their mental health and recovery. The problem for income-strapped survivors is that if you rely solely on NHS services you may find your options are limited.
Jane* had reached middle age with a sense of having lost thirty years of her life locked in the system, forcibly medicated, with a diagnosis that didn’t feel right. She said she’d been told that the definition of mental illness meant you can’t do daily tasks, and recovery to her, was “feeling comfortable where you are.”
The Medical Model still dominates NHS policy, according to our focus group. Emotional and mental distress is treated as a medical issue, based on the notion that you are mentally ill. There’s a chemical imbalance in your brain, and stabilisation with the use of medication – and a course in Cognitive Behaviour Therapy (CBT) if you are lucky, is the protocol.
Everyone is offered the same thing, said Carl, and when it doesn’t work, they drop out of services. Most people don’t know anything other than the NHS.
Clinicians could help more by looking at the causes of the difficulties, says peer support consultant, Emma Jaynes, of the Adept Living Foundation which runs training programmes for charities. Sometimes, it’s the lifestyle, family or job that caused the trauma. ‘Recovery’ in this case, means moving away from circumstances that don’t suit you. It’s more to do with who you are with.
From the point of view of the survivor, recovery means having access to a range of services and professionals who understand the multi-faceted appearances of Complex PTSD: you can look OK on the outside, neat and trimmed, coherent, but be falling apart on the inside. Or you may be a jobless, homeless, tattoo-ed ex-offender ostracised because you scare people.
The problem is that the bulk of government funding for mental health services is in the NHS, and beneficial therapies like EMDR, acupuncture and craniosacral therapy, are not easy to access. Small, peer-led organisations like Recovery Code X are excluded from funding streams because they don’t conform to the protocol.
The irony is that just a tiny fraction of the NHS’s millions could help fund peer support groups led by clinicians with specialist training in Complex PTSD. It would allow us to hire the services of accredited therapists skilled in a range of holistic techniques that can help alleviate the symptoms of Complex PTSD and aid a journey of recovery. It could help change the meaning of ‘recovery’ to something more than psycho-education about symptoms, CBT and medication for stabilisation.
Just £50K would pay for two 7-week series of male and female peer support groups that could eventually lead to a better quality of life for people who have been labelled untreatable, time-wasters and malingerers because they’re too traumatised to speak. Just joining a group and listening to people like you, can be the start of change, and crucially – hope for a better future.
*Names have been changed to protect identities.
Monday 14th March 2022
Discussions took place about the broad range of symptoms associated with Complex PTSD. The speakers answered diverse questions such as: Is PTSD or Complex PTSD worse? And, how do I join a peer support group?
Power point slides lit up a wall at the front of the room in cinematic style, and an atmosphere of quiet concentration formed. Each speaker warmed to their topic, humanising difficult themes, drawing on their own experiences of recovery, both personally and professionally.
Guest speaker, Amit Shenmar, drugs and alcohol misuse worker
Special guest, Amit Shenmar, a former drugs and alcohol misuse worker who has facilitated countless peer support groups with a well known organisation, commented:
“I can see Recovery Code X offering different packages to suit people exiting treatment programmes. You’ll need an easy referral process and to reassure people of confidentiality.”
Referrals could come from GPs and other local health services. “Making those links is our next priority,” said founder and chair of Recovery Code X, Anna Bragga.
"A series of presentations is planned for 2022 aimed at raising awareness of the organisation, and looking at ways of working together."
Jane from Bedford
To sign up for further information about upcoming talks and peer support groups email firstname.lastname@example.org.
Tuesday March 1st 2022
There are almost as many types of peer support group as there are illnesses, some have generic mental health labels, but how many are there that work specifically with Complex PTSD?
On Thursday March 10th, a team of mental health workers will provide a short presentation on what you can gain from being in a peer support group for Complex PTSD, and what it can't do, followed by an open discussion with the audience.
Amit Shenmar - Co-ordinator and facilitator, Peer Support Groups
Anna Bragga - Founder, Recovery Code X, peer tutor
Juanita Puddifoot - Professional transpersonal counsellor, international teacher, Recovery Code X
Carl Gregory - Young People's Complex Needs Worker, Peer tutor, Male Trauma Groups
Listen to the speakers talk about their experience of running peer support groups, who is likely to benefit the most, what we mean by 'recovery' and a 'holistic approach'. You'll be able to ask the panel questions, pick up leaflets and relax with a refreshment afterwards.
Open to anyone with interest in this subject: trauma victims, survivors, friends and loved ones of sufferers, researchers, professionals.
Date: March 10th 2022
Time: 6pm – 7pm
Venue: ACCM UK, 3a Woburn Road MK40 1EG
Limited number of places.
Book your place by emailing: email@example.com or phone 07387 259 843
Thursday 10th February 2022
We formed this Bedford-based community organisation in order to run face-to-face peer support groups with a holistic approach, and with National Lottery funding started the Survivors Hub in November 2019.
The following year we were successful in being awarded funding from the Bedfordshire Charitable Trust to help cover staff training costs in psycho-dynamic counselling.
We produced a set of practical self-help guides about Complex PTSD now being distributed in GP surgeries, health centres and charities working with abuse survivors. The project was executed with the assistance of the East London NHS Foundation Trust and our own steering group of mental health professionals. We are currently recruiting volunteers to help spread the word on social media.
The Recovery Code X team launching Project Educate 2021 with Bedford Mayor, Dave Hodgson. Photo credit: Mark Deg and Izzy Smart.
Our involvement with the Bedfordshire and Luton Recovery College’s peer tutor training programme has broadened our knowledge of workshop styles of delivery and content, and shown us that there is a demand for online groups and their unique advantages. As a result, we are in the process of fundraising for a new series of online single-sex Survivors Hub peer support groups for men and women.
Now, with the right funding and collaborative support, we’re looking to run the Survivors Hub all year, and host public events and talks so that people can find out more about Complex PTSD, the benefits of peer support and what we mean by a ‘holistic approach’. We’ll be looking at refining our products to meet the needs of those in treatment programmes and high functioning adults looking to improve the quality of their lives and discover new paths to recovery. We’ll be developing collaborations with local groups so that we can support each other as best we can through this topsy turvy pandemic environment.
Recovery is a journey. Our mission is to inspire and empower people who have experienced repetitive, ongoing abuse and trauma to find the keys to unlocking the codes of their own recovery. We aim to provide a safe environment with tools to support them on their journey to wholeness and harmony in mind, body and soul.
Contact us for further information about our Survivors Hub programmes or to be a social media volunteer, or just send us your thoughts and ideas. We’d love to hear from you! Email: firstname.lastname@example.org.
Anna L. Bragga
Monday 20th December 2021
- Recovery Code X Community Bubble focus group
The problem with services, said another, is that they can’t work with your feelings. You get terrible support in most services. The process is slow as well. You can’t beat addiction without mental health support. Peer support groups are key. You’ve got to keep attending though.
The ever-shifting pandemic restrictions needn’t get in the way of meeting up with a ‘blended approach’ to group work – where people can join in either online from home, or in person at a venue.
“We’ve seen it work at the Quakers in Bedford,” said Mark, who works with army vets suffering from PTSD. “Sitting in your own room is gateway stuff; you can join in after you’ve seen others in a group.”
But first there are a few misconceptions about peer support groups that need clearing up. First off, these groups are not about fixing people, you don’t have to talk, you can just listen, and nor are they a substitute for 1-2-1 therapy.
Carl, a peer support worker from Hertfordshire, who spent nine years in recovery, says: “People coming into mental health services are often forced – by a family member, coming out of hospital or prison. People often don’t even know they are suffering when they’ve got an addiction. Lots are anti-groups. I was.”
“When I needed serious help, I did join a group. You don’t have to talk about anything. Attendance is a beautiful thing. You click with the stories and you don’t feel alone. You feel like you’re supporting each other. Zoom makes it much easier – you can have the camera off.”
The success of a peer support group is directly linked to the ability of the facilitator to relate to the specific challenges and needs of members of the group. The Community Bubble heard that while a therapist should always be present to explain people’s problems and help them if they feel triggered by material, the peer trained facilitator with lived experience will be able to break down barriers with their own personal narratives and create a non-judgemental sharing space.
Carl says: “My job is to get people into a comfortable enough position to talk. You don’t have to talk though. Trauma shows itself differently in different people. A lot of this is about trust. It’s about who’s running the group, how they facilitate, boundaries and the chance to speak to someone afterwards if you get triggered is important.”
“Groups can work to help people, but they can also damage people if they are not run properly”, commented Jennifer, who works for a Bedford-based consumer health watchdog. “With a therapist present, they will learn something.”
“It’s about educating people as well. Group rules are needed,” said Amit, a peer tutor supervisor with the Bedfordshire and Luton Recovery College. “We’re not a substitute for therapy. We’re not dictating anything either.”
If you’re interested in joining a male peer support group with Recovery Code X, please contact email@example.com to register your interest. Further news and updates will appear on our website.
Thursday 11th November 2021
Anyone who lives in Bedfordshire can come along and learn about a subject of interest and receive support from people with shared experiences.
The courses and workshops are focused on recovery strategies and psycho-educative support. Most of the peer tutors have ‘lived-in’ experience of a mental health challenge and experienced personal transformation. Their stories and accumulated knowledge can offer hope to the lost and hopeless, kinship to the lonely and disillusioned. This ethos makes the Recovery College stand out from other NHS services, helping sufferers feel understood, fostering a relaxed, safe environment for sharing.
“I was able to draw on the research I’d done for our Project Educate 2021 Complex PTSD self-help factsheets in producing my Power Point presentation. My training in psychodynamic theory and experience of a variety of healing modalities probably helped add more depth.
“The peer tutor training and 1-2-1 supervision provided by the Bedfordshire and Luton Recovery College was fantastic. I feel privileged to have been given this opportunity and worked with a highly dedicated team. My supervisor was always at my side guiding me and building up my confidence until I had proven to myself that I could do it.”
‘A very professional, educative and interactive course.
I learned a lot.’
- T. Kore (Participant)
‘Very sensitive but amazing workshop. Although it triggered some past issues for me, it gave me awareness and tools how to cope and seek further help.’
- Anon (Participant)
‘Evocative, professionally produced and life-affirming. You combine the creative with the psycho-educative. What you say resonates with people. It’s transformative with a liberatory undertone.’
- Amit Shenmar, Bedfordshire and Luton Recovery College Co-ordinator
Register your interest in joining a new series of workshops about Complex PTSD with Anna and the Bedfordshire and Luton Recovery College by emailing firstname.lastname@example.org.
Friday 24th September 2021
People entering the mental health system are too often treated like ‘pariahs’ and made to feel as if their problems are their own fault, commented one delegate. ‘This adds to the burden of self-blame and shame so common among people with Complex PTSD.’
There were calls for an ‘ideological revolution’ with emotional intelligence and empathy, a gentle bedside manner, placed at the forefront of professional training.
There’s enough ‘self-stigma’ around mental health as it is, said another delegate. Domestic abuse breeds a lack of self-compassion and self-forgiveness, and physical health problems like ME, fibromyalgia, and HIV - high among African women, create additional layers of shame that don’t necessarily belong to the patient.
Wednesday 25th August 2021
Photo (left to right) Sarah Harris, Juanita Puddifoot, Sorrel Pindar, Mayor Dave Hodgson, Anna Bragga
Photography by Mark Deg & Izzy Smart
Project Educate 2021 Stage One, funded by the National Lottery Awards for All, comprises four colourful A4 double-sided self-help factsheets and four corresponding podcasts aimed at helping people who have experienced prolonged interpersonal trauma and abuse better understand their symptoms and provide information on NHS treatments and complementary therapies.
The initiative comes at a time when the country is facing unprecedented pressure on mental health services and many people without previous experience of mental health problems are seeing their mental health and wellbeing decline.
Recovery Code X founder, Anna Bragga, said:
“We’d like to thank Bedford Mayor, Dave Hodgson, for supporting our project. We contacted him back in March asking for help and were lucky to meet him to discuss our work and get his advice on several questions we had.
“Our next priority is getting the factsheets and podcasts out to the public. We’re organising an online forum to discuss this with mental health professionals and support workers in September. This initiative is about self-empowerment at a time when many people are feeling confused, anxious and disempowered. If we can get just one person on the path to healing and recovery, the work will all have been worthwhile, if we can get twelve, we’ll be ecstatic.”
People interested in finding out more about Complex PTSD can join Anna in a series of interactive online workshops next month with the Bedfordshire and Luton Recovery College.
The money will be used to produce and distribute print and audio resources to help people knowingly or unknowingly struggling with Complex PTSD in Bedfordshire during the Covid19 pandemic.
Project Educate 2021 Stage One will see the creation and distribution of self-help factsheets and podcasts for survivors, their friends and families in a Bedfordshire-wide campaign.
The guides will address the following themes:
· Understanding Complex PTSD – for survivors
· Supporting recovery: Do’s and Don’t’s - for friends and families
· NHS treatments available during Covid19 and how to access them.
· Holistic therapies survivors can access and the symptoms they address.
Studies have shown that education can reduce self-blame, shame and other negative thought patterns. It can be also be a catalyst for change, and the exploration of treatment options.
Founder, Anna Bragga, said: “Project Educate 2021 builds on our previous work running peer support groups. Effective distribution of the self-help resources will be key to the success of the project. Anyone interested in stocking copies of the double-sided flyers or obtaining the podcasts should contact Recovery Code X .”
Enquiries: email email@example.com
Copyright 2020 Recovery Code X