Sue Wheatcroft-campaigner for change an interview-Level B2 – Rachel Does Interviews
How do you feel that BPD contributed to you ending up in prison?
I truly believe that if I had received adequate treatment from the Community Mental Health Services (CMHS) I would not have gone to prison. It wasn’t the symptoms of BPD, as much how they were managed.
At the age of 14, I had been given a diagnosis of ‘inadequate personality’. This was in 1974, when such terms were the norm. I spent some time in a psychiatric ward and a special school but was then completely discharged as soon as I reached 16. I wasn’t told about my diagnosis and so spent years thinking I was just weird and that I should hide how I felt. I had quite severe attachment issues but was too embarrassed to discuss it with anyone. On one of my rare visits to the GP I became quite tearful and so was treated for depression which, I now know, I didn’t have. I struggled alone most of my life; alternating between over-sensitivity and anger; impulsive behaviour; negative thinking; and feelings of emptiness, until I finally asked for help at the age of 53. That led to my current diagnosis of Borderline Personality Disorder (BPD), but also to the stigmatisation associated with it, that prevented me from getting any help.
I offended, partly, because I was desperate, frustrated and angry at the way I had been treated (or not) by the CMHS. Every time I think back to how I was spoken to, by the very people who are employed in a position to help people like me, I go through every emotion: sadness, frustration, anger, hate, suicide… My journey to prison is rather complex and involves domestic abuse, knife crime, arson, and the consequences of severe attachment. It also includes the part played by probation, the police, and a psychiatrist who I thought was treating me but turned out to be working with the police and was a witness against me. It is, perhaps, best saved for another time.
Why are there so many women with BPD in prison?
For those who have to rely on their local CMHS, there is still a huge amount of stigma and misunderstanding surrounding BPD among the front-line staff. We phone the crisis team in tears, begging for help. Invariably, we are asked if we intend to end our lives. If we say yes, they will phone the police. If the answer is no, then we don’t need their help and if anything changes, we are told that all they can do is to phone the police or advise us to phone 111. If we phone again, we are attention-seeking, and ignored.
Many people struggle to manage their emotions; to those with BPD this can be a massive understatement. The desperation felt can be unbearable, to the extent that around 70% attempt to take their own life at least once, and 10% succeed. The urge to do this can be immediate and sometimes, the feeling will not go away until they have done something extreme: screaming, self-harming, offending…
The lack of help from the CMHS is detrimental to the health of someone with BPD. However, what is likely to tip them over the edge into extreme behaviour, is the negative attitude towards them. Telling someone to bake a cake when all that person wants to do is to go to sleep and never wake up again, is both insensitive and potentially dangerous. We all understand that resources are short, but there is no excuse for a lack of compassion.
People with BPD do not always see the world as others do. In particular, they struggle to understand if they are liked or being ‘got at’ by others, including family and friends and others they are close to. This sometimes leads to a misunderstanding that is intensified by the person with BPD due to their lack of social skills, or ‘tools’. Dialectical Behavioural Therapy (DBT) was developed specially to treat those with BPD, and other therapies have been successful in lessening the intensity of symptoms. However, resources are short and, where the treatment is available, it is not unusual to be told that ‘you are not ill enough, so don’t qualify’, or, ‘you are too ill to treat’.
Without treatment and understanding people with BPD feel lost, alone, helpless, neglected and insecure, afraid of being let down or abandoned. Unable to express their true feelings, they can come across as angry and aggressive. They may commit petty crimes but, without a true understanding of their condition, and within a culture of risk aversion, magistrates and judges often give them harsh sentences.
What was your experience of being in prison with BPD?
Most of my time in prison was spent either in Segregation or Healthcare. There was no attempt to try and understood my behaviour and I was seen largely as an attention-seeker. My spells in healthcare were usually after an episode of self-harming or attempting suicide. My stays in segregation, five months in total, were generally as a consequence of my in-cell graffiti. My way of coping was to draw and write on the cell walls. I desperately needed to get my feelings out, and no-one was willing to listen. Segregation wasn’t the answer and 23 hours a day alone in a cell can only exacerbate a mental health condition.
My one shining light in prison was the psychologist. I say ‘the’ psychologist because she was the only one there, although she was helped by three mental health nurses. She was kind to me, which meant more than you can imagine. She wanted to help me but, of course, she didn’t have the time. What she tried to do was to keep me out of segregation and, when this failed, she tried to make sure I was treated adequately. Unfortunately, this failed too, but I was grateful for her occasional appearance. It was more than I ever got in the community. My time in segregation is yet another story!
How much help, if any, is available to women in prison and does it change depending on the location?
Those who have two or more years left to serve on their sentence might be able to be transferred to one of the personality disorder units within the women’s estate. These are part of the Offender Personality Disorder (OPD) Pathway, which is co-commissioned and managed by NHS England and HMPPS, in response to the knowledge that approximately two-thirds of prisoners meet the criteria for at least one type of personality disorder.
Outside of these units, there is a serious lack of training for prison and health staff in the symptoms of BPD. Those with less than two years left to serve are housed on regular wings and are too often, seen merely as troublemakers. It is very often the case that an individual with BPD spends a longer time than normal locked in their cell. A common symptom of BPD is a fear of sudden endings, and relocating an individual into another cell, or even prison, without prior knowledge can be immensely traumatic and often results in a period of crisis.
For those lucky enough to be referred to the prison mental health in-reach services (known as In-Reach), there is inevitably a long waiting list and even then, treatments for personality disorders, outside the specific units, are difficult to source. With a lack of resources, the staff face an uphill struggle to cope with the number of prisoners with a personality disorder. In addition, making a diagnosis whilst in custody can be unreliable because the individual is away from their usual environment. People very often act differently in prison; they may be putting on a brave face and suffering in silence, or they may become anti-social in order to survive.
How does the cost of keeping a woman with BPD in prison, compare to the cost of treating a woman in the community?
There are no definitive statistics on the prevalence of BPD in the UK, although it is thought to affect between 1 and 2% of the population. The ratio of women to men having the condition is said to be 3:1, and it is, by far, the most common personality disorder among women, both in prison and the community. It is thought that around 20% of women in UK prisons have BPD which, at the time of writing, would be an estimated 650 women. Keeping someone in prison costs around £118 per day. By these figures, the daily cost to the taxpayer, to keep women with BPD in prison, is £76,700.
It is always going to be cheaper and more effective to put money into the community rather than in prison, but there needs to be a concerted effort to ensure that money reaches those with a personality disorder. Too often, it is aimed at those with ‘emotional difficulties’, which includes a range of mental health conditions. Consequently, those with BPD get left behind. Then, of course, there is the human cost. The negative impact on families and on children in particular, of putting women in prison, cannot be overstated.
What can be done to fight the stigma surrounding BPD? How much do BPD treatment services differ across the UK?
The worst thing someone can hear when they need help is that nothing can be done. Historically, people with personality disorders have been denied help from statutory services because their condition has been regarded as untreatable. This belief is slowly changing because there are many people who are trying to fight the stigma. For me, it’s a matter of awareness and training, co-produced with those with lived experience. Frontline workers, delivery services and management should all be aware of why and how a personality disorder is developed, so that the appropriate therapies and services can be carried out with empathy, understanding and kindness.
As with most health services, there is a postcode lottery when it comes to finding effective and high-quality support. Some counties have dedicated personality disorder services, whilst other counties say they do but after delving into what they offer it is found that they are paying lip service. The remaining counties have neither the plans nor the desire to set up a dedicated service.
Do you have any other stories about women in prison with BPD and what they experienced?
A lady who became one of my best friends in prison, and who I am still in contact with, received a life sentence for the murder of her boyfriend. From what she told me, there had been many signs of difficulties in regulating her emotions, long before that incident. But she didn’t get help, and two lives were ruined. And of course, there was the knock-on effect to their families and friends. She was eventually transferred to a secure hospital for treatment but is now back in prison.
Another woman had similar experiences to me in that she would often end up in segregation. She had severe attachment issues and one day she held a knife to the throat of a woman she believed had been ‘leading her on’. The matter was resolved after a few hours, but a few weeks later, she took her own life.
How have you attempted over the last few years to change the system?
When I left prison, I set up the Derbyshire BPD Support Groups. The thought of others going through what I had just because they were alone with their condition, made me feel ill and I had to do something. That was four and a half years ago, and we now have members from all over the world taking part in our WhatsApp group and zoom calls. The best thing about it is that people know they are not alone; they are able to connect with others for support and advice.
As a person with lived experience of prison and mental health, I have written several articles and blogs trying to raise awareness of the consequences of not giving people adequate treatment, and the wider impact and expense, of sending women to prison for non-violent crimes. Within the Criminal Justice System, the Voluntary Sector and the NHS, I have been part of various focus groups, and I have presented at forums and conferences.
In my work with the Revolving Doors Agency (RDA), I have co-produced a Best Practice Guide for prisons, and a Pre-Release Skills Project for the women’s estate. I was also on the East Midland’s Prison Partnership Board. I have contributed to various national documents, including Lord Bradley’s Report, Ten Years On, as well as RETHINK’s Thinking Differently, a guide to NHS England’s new Mental Health Framework. These are just a few things I have done as a campaigner and activist, and I have much more to do.
Anything else you’d like to add.
Not all people with BPD will reach crisis point. Some learn to manage their emotions when relatively calm so that they do not reach that stage. It’s important to remember that most people in danger of reaching crisis point are not thinking straight and may not be able to get help for themselves. Yet, people need to be listened to and taken seriously. For those who can afford a private therapist, this can work quite well. It certainly saved me.
I would also like to add that, when talking about coping alone with my condition, I am referring to the lack of knowledge and treatment. I was lucky enough to spend over 36 years with my soulmate, Vicky, who sadly passed away just before Christmas. We struggled together but she supported me in ways that only a loved one can.
Many thanks to Sue Wheatcroft for the interview. If you’d like more information about her/are looking for resources to help you can visit: