Depersonalisation Disorder: NHS Treatment

Debate between Jim Shannon and Lyn Brown

Tuesday 12th March 2019 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

It is an absolute pleasure to serve under your chairmanship, Mr Gray.

In the 2017 Christmas Adjournment debate I spoke about depersonalisation disorder, or DPD. I told something of the story of my constituent Jane, and requested a meeting to discuss NHS treatment of DPD. Since then the Minister has kindly met with me, Jane and Dr Elaine Hunter, a leading DPD clinician. The meeting was very sympathetic and I thank the Minister for that. We agreed that we would follow it up with a short Westminster Hall debate, to speak publicly about why the issue is so important. I shall therefore take the opportunity to talk about depersonalisation and put a couple of what I hope are gentle asks on the table.

What is depersonalisation? DPD can be triggered by a traumatic experience, a panic attack, stress or, indeed, drug use. It is a fairly common psychological or mental process for dealing with trauma. It feels as if the mind is detaching from the body; those affected feel as if they are outside themselves. Everything feels rather unreal. I have certainly felt that way before, at a time of significant and severe stress. However, depersonalisation is an intensified version of the feeling, and it is not temporary. It sets in indefinitely. When people have DPD it will often be accompanied by the sensation of noticing themselves as if from the outside, as if they are a character on a screen—almost as a character in the play of their life. The feeling can be so strong that those who have DPD are less aware of their bodily sensations, such as their heartbeat.

DPD is different from a psychosis such as schizophrenia because people who have it are aware that the experience is subjective, and not something changing in the world around them. A common difficulty for those with DPD is putting the experience into words. Many use metaphors or similes, comparing their experience to watching a TV screen. They may use adjectives such as “fuzzy” or “blurry” to describe how they feel. The lack of awareness of the condition, combined with the difficulty in communicating the precise symptoms, is the reason why many are repeatedly misdiagnosed.

[Jim Shannon (Strangford) (DUP)]

I was present on the previous occasion when the hon. Lady raised this subject. I was quite alarmed when I did some research on the disorder that she has described. I am sure that she knows the figures. According to studies in the United Kingdom and the United States, DPD affects some 2% of the population—1.3 million people in the United Kingdom and 6.4 million in the US. The hon. Lady is clearly raising awareness today, but is there a greater need to raise awareness among GPs, to make sure that they can make early diagnoses, and understand and respond to the condition?

[Lyn Brown]

I absolutely agree with the hon. Gentleman. I want to talk later in my speech about how many people experience the condition, and about other conditions that similar numbers of people are diagnosed with but that are far more common and have more resources from the NHS. I will go on to argue that DPD is fairly significant, given the number of people affected, and that more resources and effort are needed to assist them.

Many sufferers, as I mentioned, are misdiagnosed— often for years on end. Often when someone with depersonalisation disorder is misdiagnosed they are given medication, which can either have little effect or be quite harmful. Naming the symptoms and people understanding what has happened to them can be an important experience. Understanding the condition and putting a name to what they have can make someone feel an awful lot better. My constituent Jane Charlton struggled terribly before she was diagnosed. She imagined that she might have a degenerative disease, or that she might be dying. Learning the name of the condition was a crucial step in understanding it, living with it and eventually learning ways of dealing with it.

The onset of DPD was triggered for Jane by cannabis use. She was just 18, on holiday with a boyfriend, and had smoked cannabis only once before. Her boyfriend prepared her some cannabis resin and mixed it into a yoghurt. Jane tried a little—no impact; so she tried a bit more. She describes what happened next:

“My perception drew back into my head, almost as though I was now looking at the world from the back of my own eye sockets. I perceived a delay between an external event, and my brain understanding or processing it. Suddenly there was a fracture between the world and me. While my body was still in the world, my mind had become a disengaged observer.”

As I said, in DPD the individual is aware that their perception has changed, so although the experience feels like a blurring or a distancing, for Jane it was terrifying:

“During that first episode…hours followed where I sought reassurance from those around me, wanting to touch and talk to them constantly. I wanted to check that I still existed. Eventually, exhausted, I slept, in the hope that it would pass overnight. It didn’t. The next morning, the shift in perception remained, and would in fact remain for every second of every day for the next three years.”

A temporary experience of depersonalisation can serve as a defence mechanism if there is a traumatic event. It allows separation from immediate reality, but if it spreads beyond that and becomes depersonalisation disorder, people such as Jane can become separated from other emotions as well:

“If I quieten my mind, I can almost taste the colour and richness of life as I knew it before...but I can barely remember what it feels like. These days I’m in a constant state of grief; I feel as if I’m grieving for my own death, even if I seem to be around to witness it.”

It is hard to imagine the impact that that would have on a young person’s life, for those of us who have not felt it. For three years, in Jane’s case, there was no diagnosis and no remedy. Even with the right diagnosis DPD is hard to treat. Jane has had four major episodes of depersonalisation disorder, despite all her hard work, often with experts in the field. Her current episode is ongoing, and entering its fifth year.

Another person who has depersonalisation is Joe Perkins. He runs a YouTube channel called the “DPD Diaries”, which is a wonderful accessible resource for learning about the condition. Joe told me he has had about 100 medical appointments over the past 10 years, but he can count on one hand the number of professionals who had actually heard of the condition. His diagnosis took 10 years. Sadly, that is a normal length of time in the NHS at the moment. He had 10 years living with DPD and not understanding that it was a recognised medical condition and he was not on his own. He explained his experience of the condition:

“The most difficult thing for me to deal with day to day is a complete lack of emotions. I experience neither happiness or sadness; life seems completely flat; and it’s very difficult to feel motivated for anything when everything feels meaningless. Having to explain to your partner that you’re unable to feel love for them is an incredibly difficult conversation to have—and one that naturally puts a huge strain on any relationship.”

I am sure we can all understand that.

Joe first started experiencing symptoms while he was studying for A-levels, when he was too young to be eligible for treatment at the Maudsley clinic, the only facility available in the UK. Fortunately, he has since started to receive treatment. The referral took a full year, and the waiting list is long, with numbers spiralling as awareness rightly grows.

The invisibility of DPD makes it all the more important that we speak about it in this place, and I am grateful to have had the opportunity today to do just that. Just a few facts will show that depersonalisation and derealisation—a closely related condition—are an urgent concern and need far better treatment under the NHS.

First, depersonalisation and derealisation have symptoms that many of us will find familiar; 75% of us will have experiences similar to depersonalisation at some point in our lives. Secondly, as the hon. Member for Strangford (Jim Shannon) said, between 1% and 2.4% of people are likely to have these conditions—a similar level to bipolar disorder, which is far better understood and resourced, and which our GPs and experts are able to spot.

Thirdly, it is important to know that there is only one small clinic in the UK that specialises in treating the condition and, as I have said, it does not treat people under the age of 18, despite the fact that sufferers from depersonalisation disorder typically have their first experience of it in their adolescence. Finally, and rather damningly, the average diagnosis takes between eight and 12 years from the point of symptoms appearing. Those are the facts I have received.

I have talked about what DPD is, what it feels like, and the fact that it is very poorly known, which helps to explain the almost unbelievable figure of eight to 12 years to diagnosis. How debilitating DPD can be is the most important thing to understand, but the lack of provision is extremely important, too. We have a lot of work to do if we are to build the same scale and quality of NHS support for those with DPD as for those with depression or bipolar disorder.

I pay tribute to Jane for all the work she has done on this issue. She is a brave woman. She featured in an article in The Guardian in 2015, which reached a huge number of people. In 2017, she followed that up with an appearance on the Victoria Derbyshire programme. During the programme, several people called the show to say that Jane had helped them to recognise their own condition.

Jane continues to raise awareness through lobbying—she lobbied me—and runs a peer support group for people suffering from DPD, so they can experience solidarity and share experiences. She has also founded a charity called Unreal, to unify all the different bits of work being done. Jane has done all of that while holding down a full-time job and dealing with her own DPD. She has my absolute respect and gratitude for that. Jane’s work is really helping, but we need to go so much further to spread awareness not only among members of the public, but among NHS professionals.

As I said at the start, Jane, Dr Hunter and I have already met the Minister, and I am hopeful that she will be able to tell us more about what action is already being taken, but I would like to use this opportunity to put on record our four asks. All of them can be accomplished within the next few years, and none, we think, would require huge investment of resources.

First, on training, a 2017 edition of The BMJ published new guidance on the assessment and management of DPD. That was very welcome, but it has not led, and will not lead, to better and faster diagnosis and treatment in and of itself. My first ask is that the Minister write to the presidents of the Royal College of General Practitioners and the Royal College of Psychiatrists, to request that they bring this information to the attention of their members and ensure that training on DPD is made part of the core training for GPs and psychiatrists.

Secondly, I ask the Minister to push for the design and delivery of a programme of training in NHS mental health trusts around the country, not only to raise awareness, but to improve assessment and management of the disorder locally. That could include the appointment of a local depersonalisation disorder lead, who can thereafter provide guidance to local clinicians.

My third request is that those leads link together to improve access to treatment for those with the condition. I think the Minister would agree that it is not good enough to have just one small clinic at the Maudsley treating all those people across the country who have depersonalisation; we need better and more. Finally, given that expert support for young people experiencing DPD simply does not exist in the NHS, I ask her to ensure that there is specialist provision in child and adolescent mental health services, so that those under 18 can receive treatment when they need it.

Those simple steps could make a difference and bring down the average diagnosis time from an absurd and unacceptable eight to 12 years. They will help to ensure that no matter where someone lives, if they go to their GP, help will be available. So many people live in silence with this largely invisible condition. We have a long way to go to guarantee effective diagnosis and treatment for them on the NHS, but these four asks, if realised, would, I hope, start us down a good path.

NHS: Hysteroscopies

Debate between Jim Shannon and Lyn Brown

Tuesday 11th December 2018 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

I beg to move,

That this House has considered NHS treatment of patients requiring hysteroscopies.

It is an absolute pleasure to serve under your chairmanship, Mr Howarth. We know that hysteroscopies save lives, but all too often they cause excruciating pain and humiliation because some of the women who need them are not treated with the dignity, respect or even humanity that they deserve.

As hon. Members will know, a hysteroscopy involves the insertion of a camera into the womb, past the cervix, to look for abnormalities and potentially enable a surgeon to remove them. It can be used to rule out a diagnosis of cancer when women are experiencing heavy periods, unexplained bleeding, repeated miscarriages or difficulties in becoming pregnant, and it is a core part of the treatment for debilitating conditions such as fibroids and health risks such as polyps in the womb. However, for some women patients it causes severe pain, a sense of violation and lasting trauma.

The NHS website states:

“A hysteroscopy is not usually carried out under anaesthetic… Taking painkillers such as ibuprofen or paracetamol…can help reduce discomfort after the procedure.”

Unfortunately, many women experience severe pain during hysteroscopy. It is usually done with little or no anaesthetic, and many women are told nothing to prepare them for the agony that awaits. I have passed the Minister many dozens of anonymous cases from women who have experienced terrible pain at the hands of NHS surgeons and were ill-informed or misinformed about the pain risks and offered little or no pain relief. I am glad to say that she has always received those stories with sympathy, empathy and understanding, but I am receiving more and more of them all the time.

This is not an issue that gets huge acclaim or interest in the press. People are finding our campaign and Facebook page simply because they need to. I will put just two experiences on the record today.

[Jim Shannon (Strangford) (DUP)]

As my party’s health spokesperson, I am interested in all health issues, but particularly in this one, so I commend the hon. Lady for securing the debate. The National Institute for Health and Care Excellence guidelines published in March recommend that women should be offered an out-patient hysteroscopy if they have symptoms or risk factors associated with gynaecological conditions. Does she agree that that recommendation has not been translated into GP referrals? More must be done to ensure that those in need of the procedure, for the purpose of early diagnosis or the removal of issues, are referred and treated in an effective manner. It has to be done early, and that is where we fall down.

[Lyn Brown]

I entirely agree, but the importance of early action is sometimes used to encourage or even force women to stay with a procedure that is causing them great pain because of the fear of what might happen afterwards. If the hon. Gentleman gives me a moment, I will illustrate that point.

In October, I heard from Jenny, who has undergone two hysteroscopies, both of which were traumatic. She told me:

“My first experience was shocking. I wasn’t prepared for it. The doctor didn’t warn me at all, and during the procedure I experienced the most unbearable pain ever and I almost fainted. I rose up from the bed that I was on and I shouted out. It felt like my insides were being ripped out. I wasn’t given the option to stop nor was I given any support.

The nurse was behind the doctor throughout the procedure and just watched as I suffered. After the procedure my legs were like jelly. I felt faint and in pain but I wasn’t even helped off the bed, I wasn’t even given a sanitary towel to help with the bleeding. I left the room and drove myself home in that state, I’m lucky I didn’t have an accident. I felt traumatised, in a state of disbelief and shock.”

What is even more shocking is that Jenny’s second hysteroscopy was also traumatising, even though she now knew the risks and had taken steps to ensure that the same thing would not happen again. She explained to her doctor what had happened and requested a female doctor the next time. Her doctor said that she would write that on the referral, and at her pre-hysteroscopy appointment Jenny was told that she could have an injection to numb the area. She was reassured and trusted the female doctor to be more careful, but the procedure was—again—horribly traumatising. Jenny said:

“My god it was shocking, I once again shouted out and raised from the chair this time. The nurse was trying to calm me down…while the doctor said she would stop at any time but she needed to go in again and take a biopsy. I was told that if she didn’t...the procedure would be incomplete and I would be left worrying that it could be cancerous. So I endured more excruciating pain.

I wasn’t given the option to come back and have the procedure done under general anaesthetic, which I have now found out could have been an option. I felt tricked into having the procedure.

I suffered with terrible pain for a week after. Mentally I was left traumatised and still am to this day.”

Understandably, Jenny is now scared about any gynaecological procedure—including smear tests, which she knows are essential for her health.

This autumn, Annie got in touch. Annie had had ultrasounds and smear tests before; like many others, she was given literature about her hysteroscopy that made her think that it would be no different. She was advised just to take paracetamol and ibuprofen before the appointment, and she felt confident. She told me:

“As the procedure began, I felt instant pain, so unexpected and intense that I began to cry and panic within seconds. I was asking the nurse if this was normal as I was so scared there was something wrong, and she nodded to reassure me. I couldn’t get my words out, I was panicking, going into shock. She offered me her hand to squeeze through the pain. I tried to be strong, but I couldn’t, I was yelling out in pain, shaking and crying.

The nurses were telling me to relax my legs but it was impossible. When the Dr began the biopsy it was by far the worst pain I have ever suffered. I was hyperventilating and the nurse was telling me to breathe, but I couldn’t. I endured pain for 15-20 minutes.

I was asked to wait before I stood up, and I was so traumatised and sobbing, I just couldn’t move.

After a couple of minutes I got up and had to put on a sanitary towel and get dressed. It was hard—I was disoriented and shaking.

I sat with the Doctor who told me that due to it being too painful I have to have polyps removed under general anaesthetic. I could barely talk to him due to shock and tears. I wasn’t even offered water, and nobody asked me how I was getting home.

I cried from leaving the hospital at 2 until my wife arrived home at 6, at which point I broke down uncontrollably in her arms. I felt violated and abused, and the procedure felt very very wrong.”

As we know, women are still having these terrible experiences. I received another story in the past two weeks, but I do not have time to share them all. Women are still leaving NHS care feeling violated, and it ain’t going to stop unless we choose to stop it. I am very grateful to the Campaign Against Painful Hysteroscopy for providing support to those women and making sure that they are heard. The campaign group’s petition has received more than 47,000 signatures, which demonstrates that this is not an unusual, occasional thing.

We have four asks. First, if we are to stop patients from being violated or misled, all NHS trusts need to provide accurate information that enables women to give genuinely informed consent. I was pleased to hear from the Minister that her Department is developing tools to improve hysteroscopy care; I look forward to hearing her elaborate on those tools, but involving patients will be essential to making them work. The campaign wants to see a new patient information leaflet made available across the NHS. Campaigners have been working with the Royal College of Obstetricians and Gynaecologists and with specialists to create an appropriate leaflet that patients who have had negative experiences of hysteroscopy have helped to write, but it still needs to be rolled out.

The leaflet needs to be honest with patients. It needs to warn that there is a real risk of severe pain during out-patient hysteroscopy, and explain the risk factors that make pain more likely. They should tell patients that they have the right to ask for the procedure to be stopped at any time and for it to be rescheduled with a full anaesthetic. Hospitals should no longer have any excuse to hand out literature stating there will only be

“mild discomfort, just like a smear”.

After they have read through the leaflet, patients should be given an opportunity to discuss with a trained doctor what is going to happen during the procedure—whether a sample is going to be cut out for a biopsy, the risks involved, and the anaesthetic choices available. The campaign suggests that both patient and doctor should then sign a consent form to confirm the discussion has taken place and the choices the patient has made.

Our second ask is for improved training to enable better and more consistent care. We know that hysteroscopy can be a painless experience for women—some women will experience little pain from hysteroscopy even with minimal anaesthetic—but as we have heard, for others it will be like torture. There are some risk factors—older women and women who have never had children are far more likely to experience severe pain during hysteroscopy—but we cannot tell in advance what someone will experience, and that means we have to improve the guidelines and raise standards through training. The current national guidelines, produced by RCOG and the British Society for Gynaecological Endoscopy, do not recommend several forms of anaesthetic that I am told could be helpful. That has to be looked at, because, for some patients, stronger forms of anaesthetic might be the only way to have a hysteroscopy without experiencing severe pain.

Once we have changed the guidelines, investment in training will be needed to embed new best practice across the NHS. Hysteroscopy nurses should be routinely asking for patients’ pain scores during the procedure, so that informed decisions can be made about whether to continue or to stop. We need to audit pain scores and keep records of how comfortable the surgeon was with continuing, so that we can monitor whether more training is necessary. It should be a basic element of training that hysteroscopy teams should simply stop the procedure if a patient is suffering severe pain—not just hold them down—and reassure the patient that the procedure will be promptly rescheduled with more effective anaesthesia, rather than using the threat of possible undetected cancer to encourage her to continue.

Our third ask is for enough resources to enable all NHS bodies, everywhere in the country, to give women the choice between different anaesthetics when they need a hysteroscopy. The problem is not just flawed guidelines and inadequate training. Trusts may be loth to enable anaesthesia beyond over-the-counter painkillers or local anaesthetic simply because other methods are more expensive. Some are in-patient procedures, and some require clinicians to have specific training, and we all know that that comes with extra costs.

Our fourth, and possibly most important, ask is for a change to NHS incentives for hospitals. According to the information we have, the Department of Health’s quality, innovation, productivity and prevention tariff encourages trusts to promote hysteroscopy without anaesthetic, rather than offering an open choice to women. Annex F to the 2017 to 2019 national tariff payment system is explicit:

“For...diagnostic hysteroscopy...the aim is to shift activity into the outpatient setting.”

The best practice tariff

“is made up of a pair of prices...one applied to outpatient settings, the other to...elective admissions. By paying a higher price for procedures in the outpatient setting, the BPT creates a financial incentive for providers to treat patients there.”

The national target is for the risky out-patient hysteroscopies to increase to 70% of the total, up from 59%. The Department for Health is not working to reduce pain and trauma for women—it is incentivising hysteroscopies without effective pain relief and is taking our choices away. It has to stop, and I hope the Minister will look at how she is going to stop it.

Those are our four asks of the Government, and I think the Minister will agree with me that they are entirely reasonable. I do not believe they would be massively expensive to implement, and we should also consider that current NHS practices may not be cost-effective. Women who have undergone a painful hysteroscopy may not return for other gynaecological tests and procedures. If they do not have those early preventive interventions, more costly interventions will be needed later.

Some action has already been taken. The issue has been raised with the national medical director of NHS England. I thank the Minister for that, and for launching her women’s health taskforce, which I would be interested to hear more about today.

I would like to say something about the history of the hysteroscopy campaign and the amazing women who have led it—I am delighted to see some of them in the Gallery today. With their support, I have regularly been raising this issue in the House for four years now. I cannot say progress has been easy or swift. At times I—we—have been ignored by the Government, despite strong cross-party support every time I have raised the issue. I have been left concerned that officials at the Department of Health, and some senior NHS managers, have not been willing to engage with the problem of women’s pain when the NHS is under financial stress.

However, this last year has been more hopeful. The Minister met me and a core group of campaigners last year, and listened with compassion to their stories. I believe she has taken this cause as her own. I am waiting with bated breath to hear what she is going to say today, and to hear about the rapid and dramatic progress we are going to be able to make on this issue over the coming year.