A service user's view

Maria Heath is a service user representative that sits on the Digital SIG executive committee.

Learn more about Maria and her experience as a service user below.

In May 2022, I accepted a role as mental ‘service user’ representative at the Royal College of Psychiatrists’ Digital Special Interest Group, partly because I have recent experience of using mental health services, keen to share my perspectives as someone who has experience of different kinds of treatment across many years, also keen to represent the views of other service users. But what does it mean for me to be a service-user? What services are available and accessible and which services am I able or happy to use?

Hospital Admissions

Where to start? In 1987, I found myself transported to hospital in the middle of the night after a volatile phase at university, sleepless for a couple of nights, eating less, and rather puzzled by a philosophy essay. A series of admissions followed, and I was diagnosed with hypomania, but I also travelled between episodes. After I left hospital for the last time (in 1988) I occasionally met an out-patient psychiatrist, and a community psychiatric nurse. My medication was ended when I was given Vitamin B6 and Evening Primrose oil to help with moods. I returned to work, joined a drama group and I was never hospitalised again, although on occasion I have treated anxiety with Propranolol.

My Search for Counselling

This is not however, the end of the story. In my thirties I was manifestly vulnerable at times, once treated for an overdose of paracetamol in hospital, and once causing a bus to emergency stop when I ran into the road. I regret this volatile behaviour, but I had decided not to pursue mental health support at this time. Mainly I was fine, enjoying a stable phase raising children. In my forties, however, anxiety, depression and sometimes mixed manic-depressive states found me seeking medical advice. These mood swings were made worse by a physical illness finally diagnosed as endometriosis. My doctor suggested some kind of counselling or psychotherapy through the NHS. Unfortunately, however, this took a year and a half to set up. After an initial assessment, I was sent to a photography group, but at this time, felt too unwell to attend, as I was rarely leaving the house, nor did I regularly meet for the social prescribing made available. I really wanted some counselling before such interventions, and was referred to a provision for psychodynamic counselling based at St Pancras hospital. Unfortunately, however, I was told I seemed too depressed and anxious to reliably attend and that my childcare responsibilities would make the commitment very difficult. I felt somehow rejected, but continued my search for counselling and finally was offered sixteen hours across a few months.

Counselling

Meeting a psychologist weekly helped considerably. I remember suggesting, among other subjects, that we should discuss my relationship with feminism (instead of my parents!) as I had recently read Friedan’s ‘The Feminine Mystique’ which suggests that women could consider a return to study or seek rewarding work when their children grew up to create a sense of purpose. I also believed that the economic gains of a better career would support my mental health through providing improved nutrition, and access to social connections. Towards the end of the counselling, I decided that I would like to see a psychiatrist to gauge opinions on my current mental health from a diagnostic viewpoint, and I was diagnosed with bipolar disorder and traits of personality disorder during a one hour meeting, with the condition in remission (before this) for around thirty years. This could have been because I did not arrange mental health reviews during this interim so it was not evident, and I was never so ill that I needed to be sectioned since 1988.

Psychiatric Consultation

At the consultation, I said that I did not want medication that would reduce the euphoria associated with hypomania that made me feel happy, and creatively productive; perhaps not the most treatable patient given that I did not want a ‘cure’ if it came with side effects. Indeed, no suitable medication could be found:  Lithium ruled out after I complained that it had caused me fatigue and weight gain in the past, and because I might forget the blood tests to test the lithium levels which could be a risk; Sodium Valporate also ruled out as I was in the child bearing years. Since then my GP has advised me that it’s irrelevant for me to see a psychiatrist because I don’t seem to want medication, which suggests to me that psychiatry is mainly or partly about dispensing medication as well as diagnosing psychological illnesses.

Digital Resources for Psychological Health

More recently, I confided with my doctor about some housing issues related to required renovations. This time I was referred to the NHS service, iCope. Unfortunately, however, the service advised the GP that they could not help as my situation is ‘too complex’, suggesting resilience therapy instead. My GP said that he would try to find out how to access Resilience therapy, but almost a year later I heard nothing, and I have stopped asking now if the GP can arrange any counselling support as this seems impossible for me to find in the NHS at present. I no longer really expect my GP to provide a route to the perfect therapy, and accept that if I want psychotherapy or psychodynamic counselling, I may just need to pay for it!

With an unstable income, unable to afford psychotherapy, I turned to the internet… and this is where digital connectivity is significant, for after hearing that iCope could not take me on for counselling, I went online and worked through some of the self-help videos this NHS service provides. After this I started using a mobile phone app to count steps, and measure cycling speed and distance using this as a motivator for exercise. Using the Internet also enabled me to research my interest in mental health memoirs, and draw up a reading list, after reading reviews and finding recommendations. From here, I started to read academic critiques of these writings, and I also found my way to psychiatry and psychology journals, pursuing interests in trauma and neuroplasticity. Ultimately I compiled a Ph.D proposal, and the gains in conceptual understanding and cognitive development through the process of wide reading have really strengthened my mental health.

The NHS Recovery College (Camden and Islington)

One day I looked up the Camden and Islington Recovery College online which a neighbour with bipolar disorder mentioned. Here I found out that I could access three events a term and, following an initial MSTeams induction, I attended a webinar on depression and a guided walk arranged by a peer mentor, and tutor, and peer tutor. So by dint of determination and patience, I have finally found an accessible service with a calendar of interesting events that can support my mental health!

A few thoughts on Digital approaches to Mental Health

Access to the digital sphere arguably forms part of a new health activism: the digital democratisation of medical information, and the formation of patient networks, such as Hearing Voices, and social media support groups, provides agency to service users, and an alternative or supplementary provision to the NHS. An outstanding concern for me is the digital divide, as not everyone has access to reliable internet or computing technology. It is surely important that everyone who wants to have digital access, can access services regardless of economic means. Perhaps GP surgeries could provide a computer and space for their patients to connect with online services; ideal for online consultations with psychiatrists (as an alternative to using their home,  usually regarded as a private space), and also for researching local events such as The Recovery College. Without prevention, mental health issues can sometimes escalate causing calls to the Crisis team. I have used this service myself, grateful for this ‘back up’ but prevention surely is ideal. How we use services, where they are and how we find them is very important to every mental health service user. In many ways I value the new resilience I found, though my pro-active quest for better mental health. I no longer rely on my doctors to find me counselling support. I have a more resilient, independent approach than before; surely a sign of mental health recovery.    

On 29 November 2022 I attended my first conference at The Royal College of Psychiatrists: Digital Innovation in Psychiatry chaired by Dr David Rigby and Dr Romayne Gadelrab, co-chairs of the Digital Psychiatry Special Interest Group. Intrigued by the subject matter of the conference, with its focus on digital technology and psychiatry, attending the conference was among the first events that I attended after the pandemic affording such enriching opportunities to learn about new approaches and ideas. 

The Importance of Sleep

The first presentation concerned digital mental health and sleep. I was especially interested to hear about ‘digital phenotyping” from Dr Nicholas Meyer: the moment by moment observation of the human phenotype" (observable traits) using digital technology, such as personal wearable devices or smartphones, to provide behavioural and diagnostic indicators. Typing patterns, keyboard usage, voice features and/ or sleeping hours, for example, are seen as observable behaviours providing clues that may predict the likelihood of mental health relapse. 

Whilst the clinical implications and research advances are without doubt of interest to health professionals, my immediate concern is for the possible threat to patients’ privacy which I believe should always be regarded as the paramount consideration. Transparency, accountability, consent and due obedience to all data protection laws set out in the UK Data Protection Act, 2018, must surely form the basis of any pursuit or use of data gained by tracking social media or digital app usage. As such, advances in digital phenotyping must always be subject to humane ethical concerns, as enshrined in law. A further concern for me is the possible use of algorithms ill-equipped to comprehend the nuanced reasons for changed sleep patterns, such as baby-care, study or night-life that could rationally explain fewer hours of sleep across one or more days, challenging a simplified notion that less sleep equates with a psychological decline. 

The next talk under the banner of mental health and sleep presented an app called Sleepio designed to promote sleep. I recently heard about other digital applications using sound compositions and specific sound frequencies and rhythms to promote rest, relaxation and sleep. The drawbacks of disrupted circadian rhythms include fatigue, pains, errors, brain fog and possibly illness. High quality sleep and duration, improves our qualities of affect, therefore helping our relationships across all contexts, work, social and family. Certainly sleep is equally as important to our mental health as exercise and it is helpful that online platforms are catching up with the ‘steps’ culture to promote regular, good sleep. 

Virtual Reality

Other talks across the morning included a presentation on Virtual Reality for mental health, with Ross O’Brien and Professor Sylvia Xueni Pan. I was especially interested to hear about the way virtual reality headsets enable users to develop confidence through simulated social encounters for example.   

Opportunities to socialise during the lunch hour and coffee breaks provided a pleasant space and time to converse and ask extra questions. Discussing the new prevalence for arranging psychiatric consultation online, I was reassured to hear that this is optional rather than compulsory; not a ‘new norm’ that has been allowed free pass without question post-pandemic. I was interested to meet a psychiatrist working in Clifton in York, on the site of an old Victorian asylum (closed in the 1990s) where I had once been a patient. I enjoyed hearing about his home visits and fireside conversations in the past in Yorkshire villages, reminding me of the human connection sometimes possible in psychiatry. A discussion about the Friendship Bench, an initiative in Zimbabwe devised by Dr Chibanda, provided scope to think about the internet as a tool to bring about and further support this togetherness; the internet most certainly an effective way to draw people together, a means of communication and information. 

The Best new Digital Apps 

After lunch, I joined an adjudication panel for a Pecha-Kucha competition for the best new digital innovation. Each competitor had just five minutes to put across their idea. The presentations were diverse and fascinating, and it was really difficult to choose a winner. My first choice was actually Dr Olufemi Talabi who proposed an app that provides information on finding physical activities, thinking this would be a useful way to access local opportunities to meet people and participate in outdoor and physical activity. The winner was Dr Raheem Chaudhry, designer of an app that claims to assess a psychotic relapse from a five minute voice recording. I wanted to ask who defines psychosis, if an objective and agreed definition of psychosis is possible, or is this is variable, and dependent on cultural not only biological understanding; in such as case the values of predominant cultures surely could play into the way this app is used. As such, I would like to know how the algorithm has been devised, and consider the ethics around this vision and how it could be allied with power structures. Above all, it was a close contest, as the other competitors put forward valid, lively presentations. I felt that CAMHS had a very strong case for support but just did not quite fit with the criteria of the contest this time. 

Above all, I found that the conference deepened my awareness of the role the digital sphere can play in mental health today. Dr Angeliki Zoumpouli delivered an intriguing talk about challenges in delivering remote psychotherapy, addressing issues such as potential distractions, (such as televisions on or other residents in the room), or connectivity problems. When the home becomes an extension of a workplace, a substitute clinical setting, certainly the drawbacks need to be considered. The activities of other residents in the house may be compromised if a shared room us used for the discussion. The privacy of the patient may be reduced if there are interruptions from a partner or housemate. Confidential material could be overheard; and the patient may be less open. Slow internet speeds could also compromise the meeting. From a professional perspective, the challenge of interpretation in a digital setting was addressed, more reliance on verbal exchange instead of body language, for example. I was interested to hear about the mitigations of the various problems: back ups plans if the connection is lost, and the use of clear facial expressions. 

Following on, the discussion by SHOUT was an eye opener, not only given the number of users who text about self-harm, but also the revelation that the police are quite often called to intervene in cases that cross a threshold of concern. I can see there are advantages here concerning safety. I hope that users are informed that the discussions are not always confidential and what the outcomes can be if concerning information is shared. 

The day, above all, was a fascinating discovery of new information, and provided a chance for people to gather to hear about new advances at the interfaces between psychiatry, well being and technology, and to share ideas during question time, or over drinks. One of the most striking features of the conference for me was the way we were brought into a very human and warm proximity with each other, whilst the subject of the conference was digital technology. This was a reminder that whilst the internet and online applications inevitably have practical applications, human interaction is irreplaceable.