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?
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.
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.
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 HealthAccess 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.
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.