Depersonalisation Disorder: NHS Treatment

Jim Shannon Excerpts

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.