First, don’t panic. This is complicated, and the implications are scary, but at the moment I’m not hearing about any problems in the UK, and they’d likely take a few months to show up anyway.
When Greece went into financial meltdown last year, one of the first and most badly hit areas was availability of prescription medicines, especially more expensive meds.
There are lots of reasons for this. The simplest is that most meds are traded internationally in dollars. With worries about Greece returning to the Drachma, wholesalers were demanding payment upfront in cash, which healthcare organisations didn’t have.
The more complicated reasons are mostly around ‘International Reference Pricing’. This is where the health authorities in one country look at the prices paid by other countries to decide how much they are willing to pay for medicines. Greece was on a lot of reference lists for other European countries, so if the manufacturers dropped prices to a point where Greece could afford to keep buying their drugs, other countries would expect the same low prices.
There wasn’t an actual shortage of medication. At the time, I kept getting medication dispensed by pharmacies in England that was labelled in Greek, a process called ‘parallel trade’ – the meds were brought by wholesalers at lower Greek prices, then sold at higher UK prices. The medication was there, it just wasn’t getting distributed to the people who needed it.
The UK is unusual in that we don’t use International Reference Pricing. The NHS has very strong monopsony (single purchaser) power, and uses NICE to work out how much new medicines are worth by looking at how much they will benefit patients. This means that a lot of other countries and organisations look to the UK as a reference point when deciding how much to pay for medicines. So if we in the UK start paying less, profits for pharmaceutical companies will fall internationally, so they will be extremely reluctant to give the UK a big discount if we have difficulty paying them in dollars for a while.
Don’t panic. I’m not saying that this will definitely happen. The NHS is very different from the Greek healthcare system. The same factors which mean other countries look to the NHS for pricing guidance also mean that the NHS has a fair bit of clout when it comes to negotiating with pharmaceutical companies and wholesalers. The NHS is already good at using generic medications, which are cheaper and often have multiple suppliers, rather than expensive branded medicines. I’ve not heard yet of any problems in the UK. However, this explains why I am concerned that one of the first ways the problems with Brexit will hit most people is with medication shortages. I would expect this to show up particularly in high-value in-patent medicines, for example newer atypical antipsychotics such as quetiapine.
As patients, there isn’t much we can do about this at the moment. I’d suggest making sure you pick up repeat prescriptions in plenty of time before running out, but that’s always a good idea. Write to your MP, and to your local newspaper (more people read and trust local papers than national) pointing out that the NHS is going to need more money to pay for medicines while the pound is weak. In England you can also write to your local Clinical Commissioning Group, in Wales to your Health Board, in Scotland to your NHS Board, and in Northern Ireland to your Health and Social Care board.
It wouldn’t be appropriate for me to give advice on clinical practice in a blog, but there’s already been a lot of good work in the NHS on rational prescribing of generics, and minimising drug acquisition costs. I’d also advise anyone who works in healthcare and feels able to speak up to talk to their elected representatives about this and other issues.
Don’t panic. None of this has happened in the UK yet. Stockpiling drugs is a bad idea for all sorts of reasons, and in any case your GP isn’t allowed to prescribe more than a few months at a time. If you have worries about your own situation, please talk to your doctor – I’m not qualified to treat individual patients, and even if I was then taking medical advice from strangers on the Internet is a bad idea.
I’m in the Yorkshire Evening Post for World Mental Health Day, under the headline ‘Why I’m backing the fight to end second class mental health care’. In the paper copy, I got most of page 8, with a photo of me cuddling a sheep taken by my lovely fiance.
The article is almost entirely cut and pasted from the Rethink press release, I never actually spoke to the journalist – but that’s good for me, because I got to approve the press release before it went out.
I’m somewhat frustrated though by the headline which does not mention schizophrenia. Same has been true for my previous media appearances. World Mental Health Day this year focuses on schizophrenia – there’s been lots of mentions of mental health and world mental health day in the news, but hardly anything specifically about schizophrenia, whereas last year when the focus was on anxiety then lots of the coverage talked specifically about anxiety, and about anxiety as part of normal human experience and something we all experience at times.
Psychosis is also a normal part of human experience. Many people have days when it feels like the whole world is out to get you, or you worry what people might be saying behind your back. Many people have beliefs which others strongly disagree with. Feeling like you are ‘being watched’. Hallucinations brought on by illness, bereavement, loss of sight. Depending on how you ask the question, maybe one in ten people will hear voices at some time in their lives. Even dreams can be a lot like psychosis.
Maybe the idea of having ‘schizophrenia’ in a headline without words like ‘murderer’ alongside it is just too radical for now. But I hope that maybe one day I’ll get a headline with ‘schizophrenia’ alongside ‘NHS scientist’, ‘marathon runner’, ‘engaged to very lovely Graham’, or ‘bookworm’.
I’ve been hearing lots from people concerned about care.data, the new system to make NHS records more accessible for research.
I’m about to start working on a project which will use this sort of data (epidemiology of antibiotic-resistant bacteria – tracking ‘superbugs’ like MRSA, so we can make medicines for them work better).
I would like to explain why being able to access this type of data is so important for research that can have very big benefits for everyone. I am happy to answer questions, though I don’t know everything.
It has taken about nine months to negotiate access to most of the data we need, and my work will include things like physically going to GP surgeries around the Scottish Highlands, getting handwritten medical records out of a brown envelope, and transcribing the relevant bits, and then using individual details like people’s names and addresses to match this up with hospital records (I will have to do lots of going through filing cabinets in different hospitals), pharmacy records, and so on. This is very very difficult, time-consuming, and expensive. We have had to get approval from lots of different official organisations and people.
There are lots of security precautions which we have to take to use patient-identifiable data. For example, most people working on this project will not be able to see all of one patient’s record – I’m the only person who can do that under most circumstances.
If the new system was in place, I and my project would have much *less* access to patient-identifiable information. I would only be able to see specific bits of patient records, for example just antibiotic prescriptions instead of everything which the GP has scribbled down. I would be able to get records which were all already matched up for patients, so I would not have to work out whether one ‘Sarah Brown’ was the same as another ‘ST Brown’ who lives in the same postcode, and would not have to go through lots of records looking for clues.
Most importantly, care.data will only provide access to ‘potentially identifiable’ information. Unlike my current project, I would never have access to a patient’s name, or their full postcode. This sort of information is only identifiable to someone who is trying quite hard. For example, I have a relatively rare medical condition myself. There will be very few people living in my area who are women age 30 with my rare condition, so if someone was to break down the treatments used by area, age and condition, they could work out which of several medicines I take. But because care.data will only provide access to information as needed, that’s all they could find out, and the system would record and prevent any unauthorised access. They couldn’t do what I can do now, which is walk into a GP filing cabinet and read everything ever written about any patient in the practice, with a very low likelihood of ever getting found out.
I am much happier with the level of data security care.data will provide than with the current ad-hoc arrangements. They will be consistent, with good oversight, the information disclosed will only be what is needed instead of having to comb through a patient’s full record, and the research it enables will make us all safer and healthier.
I hope this makes sense, please ask me questions, I don’t promise to know all the answers.
This is an essay I wrote for the Health Informatics module of my Public Health MSc, about the provision of mental health beds. I’m posting it as follow-up to yesterday’s BBC Breakfast appearance, because I didn’t get the chance to go into things in as much geeky detail as I’d have liked to. Sorry it’s a bit jargon-heavy in places, it was written with professionals rather than the public in mind.
Key points: home crisis care services don’t replace the need for beds as is often claimed. Where beds are cut, more people are sectioned.
How do we know if York has enough Working Age Adult Acute Inpatient Mental Health beds to meet population needs?
Acute inpatient mental health services in York are run from Bootham Park hospital, amongst the last ‘County Lunatic Asylum’ to still be used for its original purpose (National Archives, 2012), covering a population of 285 000 across an area of 400 square miles, in York and rural North Yorkshire (Foundation School, 2012). The number of inpatient beds at Bootham has been in decline for many years, with cuts in 2011 including Ward 3 for acutely unwell patients (Catton, 2011) and the Mother and Baby unit from Ward 1 (BBC News, 2011). It is now a matter of some concern amongst service users and staff as to whether Bootham has sufficient beds to meet population needs, for example in May then Ward 1 (Women’s acute ward) was at capacity of 13 beds, with an additional 8 women placed out of area (Personal communication, 2012).
What does need mean in this context?
Need is defined in the context of a Health Needs Assessment as the capacity to benefit from healthcare interventions. It should be differentiated from demand, since many patients in acute MH wards will not ‘express a felt need’ to make use of services. This essay is not an attempt to conduct a needs assessment; rather, it is a summary and evaluation of what information is available, and would be necessary, to conduct such an assessment. Stevens et al (2012) describe three methods of assessing healthcare needs: Corporate, seeking views of stakeholders and key informants; Comparative, where service provision and use across different areas is compared; Epidemiological, which extrapolates need from characteristics of the population to be served, treatments available, and current service provision.
What is the ‘capacity to benefit’ from MH beds?
A full review of the uses of acute MH wards is beyond the scope of this essay, but if there are such wards, they should effectively provide tertiary prevention and treatment. The Royal College of Psychiatrists (2011) is clear that bed occupancy should be below 85% to allow patients to be safely treated in a local bed without undue delays, but half English wards have occupancy rates above 100%.
Do ‘alternatives to admission’ remove the need for beds?
Intensive community treatment has been suggested by the Trust as an alternative to hospital admission, fulfilling the same need as inpatient beds at lower cost. However, most studies on the ‘intensive home treatment / crisis team’ approach were conducted decades ago, when such approaches were first introduced across England, against a background of higher inpatient beds than now exist.
York currently has 29 acute beds for a population of 285 000 (10 beds / 100 000 population). Minghella et al (1998) reduced bed days by 48% through intensive home treatment, but retained 25.6 acute beds per 100 000 population. Bracken & Cohen (1999) found that home treatment resulted in a 25% drop in admissions, against a background of 84 beds to a population of 380 000 (22 beds / 100 000 population), but stated that ‘[residential] places of genuine asylum are still needed in a crisis’, with 11% of the sample originally offered home treatment needing hospital admission. Tomar et al (2003) found 46% of patients with first-episode psychosis assessed by a home treatment team nevertheless required admission. Gould et al (2006) found that despite well-established home treatment services, by three months 72% of patients assessed for home treatment had been admitted.
For schizophrenia and related ‘severe mental illness’, a Cochrane metanalysis of eight controlled trials with total 984 patients (Murphy et al, 2012) found that 45% of those initially allocated to home ‘crisis care’ had experienced admission, with no significant difference between groups who did and did not receive crisis care found in number of admissions, nor in use of the mental health act, nor in days in acute care, at six months. For borderline personality disorder, Borschmann et al (2012), in a Cochrane review, were unable to find any RCTs of the benefits of any form of crisis intervention other than hospital. Burns et al (2001), in an extensive systematic review, found that home treatment reduced days spent in hospital by only about five per patient per month, a result that did not reach statistical significance.
Intensive home treatment has been rolled out across the whole of England since about 2000, allowing Jacobs et al (2011) a large epidemiological study. Whilst admission rates across England fell with declining bed availability, no significant difference in admission rates was found between areas which had and had not yet implemented crisis teams. Service provision may be a more important determinant of admission than need.
Keown et al (2011) found a strong association between bed closure and increased use of the Mental Health Act, such that for every two beds closed, one more person in the next year would be involuntarily admitted. Whilst an epidemiological study cannot show causation, Keown et al (2011) found a clear dose-response curve, across all beds and admissions in England for the twenty years prior to 2008, despite many ‘alternatives to admission’.
Intensive home treatment can at most reduce frequency and duration of hospitalisation, but that it cannot eliminate the need for inpatient beds for some patients. In many of the above trials, the patients most likely to need hospital admission were those with less secure living conditions, or more severe illness. Patients with dual diagnosis, or a history of violence, were often excluded from home treatment. A reduction in bed numbers below safe levels may exacerbate these health inequities.
How do we know how many beds are needed?
Screening population directly for need
Ideally, mental health service provision would be determined directly by need. The Adult Psychiatric Morbidity Survey (2007) is a household-based survey which attempted to screen for the presence of diagnosed and undiagnosed mental illness, thereby establishing need as well as demand. A household survey is likely to underestimate rates of severe mental illness, as people may be homeless or living in an institution, and differential rates of responding by people with a mental illness may also be problematic. As a member of the public I only have access to the final report for all of England, so the implications for York of this potentially useful data source cannot be discussed further here.
The Health Survey for England (Department of Health, 2011), another household-based survey, uses the General Health Questionnaire (GHQ), a depression screening tool. The North East Strategic Health Authority faces particular public health challenges, with a significantly higher prevalence (17.5%) of possible mental illness than the English average (13.2%), and also significantly more people drinking above recommended limits (32.3 vs 26.8).
Epidemiological – inferring need from related measures
Mental health needs are strongly predicted by social determinants, particularly deprivation (Wilkinson et al, 2007). The Jarman index (Jarman, 1983) was originally developed as a measure of need for primary health care, is often referred to as an index of deprivation, and is calculated from UK Census data. The Townsend index is a measure of material deprivation also reliant on Census data. Dependency on the Census means the underlying data are often years out of date, and it may under-represent groups commonly missed by the Census, who may be disproportionately likely to have mental illness.
The York Psychiatric Needs Index (Smith et al, 1994) is used to allocate funding within the NHS, and attempts to predict psychiatric need based on deprivation, using mathematical techniques to simulate iso-supply. It therefore tends to be more redistributive than demand-led models.
Mental Illness Needs Index (MINI) (Glover et al 2004) is based on annually updateable data of measures taken from the Index of Multiple Deprivation. MINI seeks to predict psychiatric admission rates, which may be determined by supply or demand over need. However, the model did not account for considerable residual patterning by administrative area, emphasising that bed use may be influenced by health system factors other than need.
An approach comparing York to areas of iso-need has several difficulties. The ecological fallacy means that area-based measures do not necessarily provide good information about individuals within that area, so people with high unmet need could be ‘hidden’ within an area with low need indicators. Nationally there is a considerable underprovision of acute mental health beds, with occupancy rates of between 100 and 140% (Royal College of Psychiatrists, 2011), so equal provision for iso-need may still be considerable underprovision.
Community Mental Health Profiles
The Mental Health Observatory (2012) provides ‘Community Mental Health Profiles’, which bring together a range of information about risk factors, prevalence, and service availability in each local authority, from a variety of sources. The local authority for York does not map precisely onto the catchment area for Bootham hospital, but there is considerable overlap. See Figure 1 for the Community Mental Health Profile for York. The utility for each item as a predictor of mental illness prevalence is discussed in the profile itself, and extensively discussed by Wilkinson et al (2007).
The Community Mental Health Profile shows York to be significantly better than the English average for most wider determinants of mental health, using data mostly from accurate and frequently updated sources, such as Department for Education records for Not in Employment, Education or Training, or unemployment from claimant count. However, using the Index of Multiple Deprivation to predict mental illness is problematic because the ‘Health Deprivation and Disability Domain’ is constructed using measures of mental illness.
York is at or better than the English average for risk factors. Whilst the physical activity levels for children are based on a survey of PE time so should cover all children in school and be reasonably reliable, the adult physical activity measure is based on a questionnaire which will have been subject to considerable respondent bias. Homelessness is a particularly interesting variable, because it is so closely linked to mental illness. One in three British patients with schizophrenia has been homeless, and between a quarter to a third of street homeless people have a severe mental illness (Rees, 2009).
For levels of mental illness, York has significantly more people than the English average on the GP depression register, which could reflect prevalence or diagnosis. Dementia and learning disability are unlikely to have a major impact on working age adult acute beds. It is unfortunate that levels of severe mental illness, which must also be kept on a GP register under QOF, are not given here, since these people will be heavy users of inpatient care. The GP severe mental illness register gives a prevalence for North Yorkshire & York PCT of 0.7%, not significantly different from an English average of 0.8% (NHS Information Centre, 2012).
For treatment, York has an average spend per head not significantly different from the English mean, though it is in the lowest quintile. Significantly more people use secondary care, although significantly fewer are on Care Programme Approach, and contacts with a Community Psychiatric Nurse or other professionals are significantly less frequent, suggesting perhaps that resources are thinly spread over many patients. York has significantly more beds days spent inpatient per head of population than the England average, although it is still within the central quintile. This statistic is prone to distortion by the small number of patients who have very long hospital stays.
Overall, although York has several socio-demographic features which should be protective against mental illness, then it has more people with depression, more people in secondary care, fewer contacts with services which might keep people out of hospital, and more bed days than the English average. It could be that York health systems use a lower threshold for detecting and referring mental health problems, such that those referred require less treatment. Perhaps over-reliance on protective socio-demographic features is an example of the ecological fallacy, so that whilst most people in York enjoy good mental health, then a substantial minority have considerable mental health support needs. It does seem that York could be providing more intensive support for those referred to secondary care, but this should not be at the expense of inpatient beds.
The Mental Health Minimum Dataset
The Mental Health Minimum Dataset (MHMDS) (NHS Information Centre, 2012) is a record of services provided in secondary care. This data is derived from routine care records in a similar way to Hospital Episode Statistics, but includes contacts with community services. Independent sector data is not included, which may particularly distort outcomes in areas with high bed occupancy and consequent high use of out of area placement, and for specialist services which are often privately provided.
Table 1. Comparison of service use in York and elsewhere, from the MHMDS.
York England ‘Prospering Small Towns’ (iso-need)
Rate of people accessing secondary care, 3186 2789 n/a
per 100000 population
Percentage of people accessing secondary
care who are admitted to hospital 9.2% 8.1% 7.7%
Percentage in hospital detained under
Mental Health Act 28.4% 40.9% 35.1%
Percentage staying in hospital longer than 34.1% 46.5% n/a
All figures in Table 1 are 2010-11 data unless stated otherwise. ‘York’ data is for the former North Yorkshire & York PCT. Rates would be preferable to percentages, but I do not have access to raw data to calculate these.
York has consistently had fewer Mental Health Act (MHA) detentions than England or similar towns. However, the average length of stay in hospital in York is consistently longer. This could suggest that hospital beds might be better used by shortening stay.
Whilst ‘corporate’ concerns from staff and service users reflect too few beds for patients referred, comparative and epidemiological data is more difficult to interpret. High rates of diagnosis, and longer inpatient stay, may reflect high need, better access, or different referral patterns. To assess York’s mental health bed needs as one part of a Healthcare Needs Assessment, I would need fuller access to underlying databases to better establish comparison with areas of iso-need, and also the ability to investigate causes of variations from comparators.
Word count: 2190
Adult Psychiatric Morbidity Survey (2007). National Centre for Social Research: London. http://www.ic.nhs.uk/pubs/psychiatricmorbidity07 [Accessed 21st June 2012].
BBC News (2011) Postnatal mental health unit at Bootham Park Hospital in York to remain closed.http://www.bbc.co.uk/news/uk-england-york-north-yorkshire-17221703 [Accessed 21st July 2012]
Borschmann R, Henderson C, Hogg J, Phillips R, Moran P. Crisis interventions for people with borderline personality disorder. Cochrane Database of Systematic Reviews 2012, Issue 6. Art. No.: CD009353. DOI: 10.1002/14651858.CD009353.pub2
Bracken, P., Cohen, B. (1999) Home treatment in Bradford. Psychiatric Bulletin 1999, 23: 349-352.
Carr-Hill, R., Hardman, G., Martin, S., (1994)A Formula for Distributing NHS Revenues Based on Small Area Use of Hospital Beds. York: University of York.
Catton (2011, August 21st). Wards may merge at York’s Bootham Park Hospital. York Press: York.
Foundation School (2012) Job Description. http://www.nationalarchives.gov.uk/A2A/records.aspx?cat=193-boo&cid=0&kw=Co-partners%27%20Magazine#0 [Accessed 21st July 2012]
Glover G., Arts G., and Wooff D. (2004). A needs index for mental health care in England based on updatable data. Social Psychiatry and Psychiatric Epidemiology 39:730-738.
Gould M, Theodore K, Pilling S, Bebbington P, Hinton M, Johnson S. (2005) Initial treatment phase in early psychosis: can intensive home treatment prevent admission? Psychiatric Bulletin 30: 243-6.
Department of Health (2011) Health Survey for Englandhttp://www.dh.gov.uk/en/Publicationsandstatistics/PublishedSurvey/HealthSurveyForEngland/index.htm [Accessed 21st June, 2012]
Jacobs R, Barrenho E. Impact of crisis resolution and home treatment teams on psychiatric admissions in England. British Journal of Psychiatry 2011;199:71-6
Jarman, B. (1983) Identification of underprivileged areas. BMJ, 286, 1705 -1709.
Keown, P., et al. (2011) ‘Association between provision of mental illness beds and rate of involuntary admissions in the NHS in England 1988-2008 : ecological study’ BMJ (Clinical Research Edition) 343 (0959-8138
Mental Health Observatory (2012) Community Mental Health Profileshttp://www.nepho.org.uk/cmhp/ [Accessed 19th June, 2012]
Minghella, E., Ford, R., Freeman, T., et al (1998) Open All Hours: 24 Hour Response for People with Mental Health Emergencies. London: Sainsbury Centre for Mental Health.
Murphy S, Irving CB, Adams CE, Driver R. Crisis intervention for people with severe mental illnesses. Cochrane Database of Systematic Reviews 2012, Issue 5. Art. No.: CD001087. DOI: 10.1002/14651858.CD001087.pub4
National Archives (2012) Bootham Park Hospitalhttp://www.nationalarchives.gov.uk/A2A/records.aspx?cat=193-boo&cid=0&kw=Co-partners%27%20Magazine#0 [Accessed 21st June 2012]
NHS Information Centre (2012) QOF prevalence data tables 2010/11, http://www.ic.nhs.uk/statistics-and-data-collections/supporting-information/audits-and-performance/the-quality-and-outcomes-framework/qof-2010-11/qof-2010-11-data-tables/qof-prevalence-data-tables-2010-11 [Accessed 20th June 2012].
NHS Information Centre (2012) Mental Health Minimum Dataset, http://www.mhmdsonline.ic.nhs.uk/ [Accessed 22nd June 2012].
Rees, S. (2009) Mental Ill Health in the Adult Single Homeless Population. London: Crisis. http://www.crisis.org.uk/data/files/publications/Mental%20health%20literature%20review.pdf[Accessed 19th June 2012].
Royal College of Psychiatrists (2011) Fair Deal campaign: In-Patient
[Accessed 11th June 2012].
Smith, P., Sheldon, TA., Martin, S. (1996) An Index of Need for Psychiatric Services based
on In-patient Utilisation. British Journal of Psychiatry, 169:308-316.
Stevens, A., Raferty, J., Mant, J. (2012) Implementing Joint Strategic Needs Assessment. http://www.dhcarenetworks.org.uk/_library/Resources/ICN/Research_evaluation/Appendix_2-health_care_needs_assessment.pdf [Accessed 25th June 2012].
Tomar, R., Brimblecome, N. & O’Sullivan, G. (2003) Service innovations: Home treatment for first-episode psychosis. Psychiatric Bulletin, 27, 148– 151.
Wilkinson, J., Bywaters, J., Chappel, D., Glover, G. (2007) Indications of Public Health In the English Regions 7 – Mental Health. North East Public Health Observatory: Newcastle. http://www.nepho.org.uk/securefiles/120617_1801//js_mentalhealth_printready_010607.pdf [Accessed 17th June 2012].
Yesterday (16th October 2010) I was live on BBC Breakfast TV, talking about the shortage of beds in mental health, ‘out of area placements’ such as when I was sent to a private hospital in Harrogate because there were no beds in York, and generally having a rant about the state of mental health services & cuts.
The hardest part was trying not to swear when they asked what I would say to the Health Minister, Norman Lamb.
Trigger warning – this piece talks about mental illness discrimination. Non-explicit mentions of suicide, self-harm, violence, crime, police, but several links are to more explicit pieces.
‘Mental Patients kill 1200’ screams the Sun headline. I thought they’d changed since the years of ‘Bonkers Bruno Locked Up’. I’d agreed to have my photograph and story in the Sun, as one of those ‘mental patients’, under a ‘schizophrenia’ headline, talking about my experiences of what my care team tactfully refer to as ‘severe and enduring mental illness’ (the piece is now paywalled, but you can read another interviewee’s take on it). I won’t discuss the stats, as they have already been done here & elsewhere, except to say that the headline isn’t even right, and doesn’t discuss the real risk factors, which have more to do with young men using alcohol and street drugs, than psychosis per se.
I was shocked when I was asked to appear in the Sun. I’d responded to a request by a mental health charity for women with my diagnosis, the first time I’d done media work. When they said it was for a ‘national newspaper’, I was expecting maybe a feature in Guardian Weekend. Not the Sun. Not the tabloid behind such memorable cover stories as ‘Bonkers Bruno Locked Up!’. I looked through the Sun archive, and every single mention of schizophrenia was next to words like ‘stabbed’, ‘hacked to death’, ‘slashed’, ‘psycho killer’, or occasionally illegal drugs. How could I let them use my face for what had to be another monstering? But the Sun is the UK’s most widely read paper. This is where speaking out about mental illness really matters, the way I might be able to talk to people who would campaign against a ‘mental hospital’ being built in their neighbourhood. I read the ‘health’ section they wanted to put my story in, which was for some reason in the ‘women’s’ section of the paper. Of course, the headlines were lurid, with ‘My fake boobs exploded!’ and ‘My Dad’s a lesbian!’ but the actual stories weren’t too dreadful. The ‘lesbian dad’ turned out to be quite a nice story about a trans woman, with a quote from her daughter saying ‘It was strange at first, but we quickly got used to it’, and a picture of two women hugging, made to look quite ordinary and not a freakshow.
So I did it. The interview wasn’t too difficult, I had help from Time to Change and also talked things through beforehand with my lovely friend Symon Hill, who is basically the ethical Max Clifford. I was sure what I didn’t want to talk about and just said no when they asked about my family, and chatted away about the everyday human details of my life, like my love of running and flapjack. It was instructive finding the way in which what I said was turned into a work of fiction very loosely based on my words, but I’m not too unhappy with it. They even put in a statistic I gave them about seven out of ten employers not wanting ‘someone like me’. The photoshoot was more awkward, they sent a woman round first to plaster my face with an inch of brick dust and turn my eyelashes into tarantula legs. I had to insist I wasn’t going to pose looking angry or sad or with my top unbuttoned for extra cleavage. Still, the pictures they used were friendly and positive and looked like someone you wouldn’t mind living next door to.
I’ve done other media work since, but this was my first time, and so far my biggest audience. I was proud of it, and still am. This was when I decided to ‘come out’ about having a particularly scary-sounding mental illness, spending years not able to work, and the way this has gone on for most of my life. It’s been a good few years since then, I’ve finally got useful treatment, really good support, and I now have a wonderful boyfriend, nearly finished an MSc, and am hoping to start work soon, as well as doing lots more as a sort of ‘consultant mad person’. There’s been some bad times since too, some of the worst are recorded on this blog, where people have acted from false assumptions, bigotry and prejudice. Other news reports yesterday echoed some of the things that have happened to me, like this report from Victim Support and Mind about how victims of crime who have mental illness are treated, where a woman describes being sectioned after reporting a sexual assault, and this story about a man with schizophrenia who was killed by police using unsafe ‘restraint’ techniques.
Headlines like those in the Sun fuel the assumptions which kill people like me. Sometimes we are killed outright, by police or health staff who treat us like safety hazards to be processed, not people who are terrified and in need of compassion. More often in the way society pushes us and our problems to the margins, leading to the health and social problems associated with poverty and exclusion, poor healthcare, lives with little to do but self-medicate with cigarettes and alcohol and street drugs, which mean people like me die twenty years too soon from physical illness. I’m ten times more likely to be violently assaulted than most people, and three in five women like me are sexually assaulted as adults – but when it happens, again and again, we aren’t taken seriously. Society systematically kills us, quickly or slowly, actively or by taking away what we need to survive.
Severe mental illness is scary. It is terrifying going out of my door today, wondering who knows, if after yesterday’s Sun headlines people are watching me walk down the street, hating and fearing me, telling their children to stay away from me. Feeling exposed, vulnerable, persecuted, threatened and fearful, thinking that everyone knows you are evil, is a common part of the paranoid symptoms I and others experience. Having it shouted in the headlines that all this is really true, that you really are dangerous to others, and everyone knows, is a sick joke. I’m probably going to be on national BBC TV evening news next week, talking about the shortage of acute mental health beds. The Sun headlines make me much more scared to do that, but personal stories are so important for campaigning for the changes which save lives.
Stigma kills, and one reason it kills is because we believe it too. Once in my support group we were talking about what ‘schizophrenia’ means, and someone who’d had multiple hospital admissions on heavy-duty antipsychotics said ‘It’s what that man on the telly had, the one who killed all those people, isn’t it?’. Sometimes stigma means that you never accept your diagnosis, because that would mean you were like ‘the man on the telly who killed all those people’, and then the psychiatrists will shake their heads and say you ‘lack insight’, and all your treatment will be done to you not with you, a trap of injections and forced face-down holds, all because you stubbornly refuse to accept that you are a murderer-in-waiting. Or sometimes stigma means that you believe what they tell you, the diagnosis, the prophecy, and so you must die to protect others from this awful monster that you have become, as this piece by Katy Gray eloquently explains.
The Sun is right. Severe mental illness is scary. From the inside, it’s terrifying. We need help to make society safer for us to live in, not monstering.
If you’d like to do something useful, please have a look at the upcoming ‘Schizophrenia awareness week’ by Rethink Mental Illness.