Do we need “a debate on mental health”?

A picture of Stephanie Bincliffe, a young, very overweight white woman wearing a green T-shirt and a pair of shorts, sitting against a wall decorated in many colours with some cuddly toys sitting on the floor next to her.This is a claim I have seen being made in the media on a fairly regular basis. Usually it’s about general mental health issues, and often includes a strong element of blame towards those who are unwell, along such lines as “men keep killing themselves because they won’t talk about their feelings!”. In my opinion we do not really need a debate about mental health generally. We need a debate about mental health care, mental health funding and mental health law. And we need change, because the system is failing and people are dying.

There are too many people ending up in the mental health inpatient system when they do not need to be, or would not have needed to be if they had received support earlier, when they or their family (in the case of children) first asked for help. There are people trapped in completely unsuitable units. There are whole units who are taking patients that are completely unsuitable, or not making sure they are suitable and understand their needs. There are private units which take public money to provide completely inadequate care and do not hire sufficient staff to keep people safe and make sure the experience is therapeutic and not traumatic. And worst, there are laws which allow people to be forcibly detained in places which make no attempt to address their needs and which do not force clinicians or their staff to learn how to address those needs.

Part of the problem, as already amply discussed here and elsewhere, is that the social care system has been starved of funds and this means that local authorities do not want to have a pay for day-to-day care for someone with autism and a learning disability; they would prefer that the NHS pays and this means they remain in hospital. When people do get released, all too often their care breaks down after a few months for reasons of money or poor training, meaning they are returned to hospital which is often miles away. There have even been cases of a local authority vetoing a care package for an autistic person who would have been returned home to their area because they needed “specialised” care, which resulted in the person remaining in hospital.

However, it is not only at local authority level that there are problems with funding. The NHS has come to rely on private hospital chains to provide mental health care; many local NHS hospitals have been closed because it is more “cost-effective” to sell the building than refurbish it. In every town you see boarded-up NHS buildings. Of course, the old out-of-town Victorian asylums were outdated needed to be closed, but the closures have continued apace long after they were mostly closed. In Hull, a good adolescent inpatient unit was closed because NHS England demanded that five-day inpatient units had to convert to seven-day care or close. The result was that there was no inpatient care for adolescents in Hull, resulting in their having to travel out of area to places like Manchester. In some rural areas there is no adolescent inpatient care and there never has been — with the same result, with patients from Cornwall being transported all the way to Kent and Essex, more than 200 miles away. The upshot has been that people are denied important family time and home leave: one patient spent Christmas with family for the first time since 2013 last year.

Cases of people being denied normal human dignity in the name of ‘protection’ abound; often this is exacerbated by failure to recruit enough staff. Only this past week a lady told me that her autistic daughter had had a meltdown in a private unit (70-something miles from home), to which she had been admitted informally last year (with the promise that it would only be for four weeks; five months later, she was sectioned and they are looking to transfer her elsewhere) and she was told that it “came out of nowhere”. In fact the reason was that she was unable to have a bath because she was not allowed to bathe alone because of self-harm risks but there was only a male staff member to supervise her. (On another recent occasion, over Christmas, she had to wait two hours for the bathroom to be unlocked in the morning so she could use the toilet; this is not an isolated case.) Women and girls are particularly at risk from such displays of disregard to their dignity; cases of girls not being allowed sanitary protection while in anti-rip clothing (again, to prevent self-harm) have been recorded in at least two units that I am aware of (see previous entry for the less obvious reasons why this is harmful).

As you may have guessed, I am talking principally about autistic people here. Two particular groups are particularly badly served: one being adolescents, particularly girls, with mental health problems stemming from the pressures of school and undiagnosed autism (the presentation formerly known as Asperger’s syndrome) and the other being people of both sexes with a learning disability who suffer a crisis, often prompted by the certainties of school coming to an end and having to adjust to the changes that come with that. Neither the mainstream nor the learning disability mental health system are equipped to deal with the challenges of autism, despite nearly nine years of high-profile campaigning since about 2009: the Steven Neary case, the Winterbourne View scandal, the deaths of Connor Sparrowhawk, Stephanie Bincliffe and others. Stories abound of staff simply displaying no understanding, of low-level staff such as healthcare assistants or other patients knowing more about it and understanding it better than consultants or senior nurses.

Some of the changes that are badly needed are:

We need separate units for autistic people, but all mental health nurses and psychiatrists need comprehensive education on autism, both in conjunction with learning disability and otherwise, as part of their training. They need to be able to recognise “challenging behaviour” as communication so that they can minimise the situations that lead to it and respond appropriately rather than punitively or with aggressive and violent restraint. The need for specialist autistic units arises, particularly for adolescents, because autistic girls in particular tend to copy behaviours of other girls and if they see others injuring themselves, they are liable to adopt the methods they see them using. It happens often.

There should be no blanket policies banning such things as mobile phones and internet access. This is often justified on grounds of patient and staff confidentiality. Adult acute wards have relaxed this policy over recent years but it still remains on many adolescent wards and in secure units which hold both sectioned and forensic patients. While there is sometimes good reason to separate someone from their online ‘life’ for the sake of their own mental health (e.g. to stop them communicating with people who would bully them or accessing “pro-ana” and other harmful websites), it should never be a blanket policy. As an anonymous parent said on Twitter today, “no child should be left with nothing but self-harm to pass the time”. Units should not be allowed to hold both section 3 and forensic patients so that the lives of sectioned patients is not unduly constrained.

All private providers of mental health care, if they are to start or continue being contracted by the NHS, need to account for how they spend money. They need to be able to guarantee that they can provide adequate permanent staff at all times including at weekends and during holiday seasons, where there are multiple public holidays, such as Christmas and Easter, and staff must be impressed upon that they will have to work at these times because just as their personal care needs do not stop that day, neither does any disabled person’s or hospital patient’s. This applies to both companies and individual units: if they cannot recruit sufficient staff to work in a particular location, the unit does not open. If staffing problems continue for an extended period, the unit closes. No unit can be dependent on agency staff who are not regular enough to be trained to deal with a patient’s specific needs; no patient should face days of lock-up or be expected to tolerate ‘visits’ through a hatch because only agency staff are available.

The sectioning rules need to be tightened up so that it is more difficult to detain a patient after they have admitted themselves voluntarily. There must be a period after a doctor has decided to section whereby the approved mental health professional (AHMP) can familiarise themselves with the particular patient’s needs. This would mean there is no jump to section 3; an automatic three-day hold should become the norm. No patient should be allowed to be transferred without their consent in a certain period after being sectioned; this is to safeguard against someone being sectioned on a pretext to allow transfer. There must be an automatic tribunal with the patient or their family allowed to contest the reason for them being sectioned to identify, for example, if the incidents that led to it were prompted by the conditions of the unit or the behaviour of the staff or other patients rather than an actual deterioration in their mental health. And while an appeal is ongoing, a section should not be renewable and no transfers should take place without consent.

Finally, doctors should not be able to overrule another doctor’s treatment plan just because they subscribe to a different theory from theirs. For example, if a patient comes into hospital with a perished feeding tube and requires a replacement, the mental health team should not be able to interfere to stop this just because they believe the problem may be psychological. If someone comes in to receive further treatment for, say, a mitochondrial disease diagnosed at another well-regarded hospital, a group of psychiatrists should not be able to detain that patient because they believe it is a psychiatric problem or factitious. The second case (that of Justina Pelletier in the USA, who as a result of this false rediagnosis spent 18 months in a locked psychiatric ward) is well known, but the first recently happened to a friend of mine who as a result of this refusal remains unable to take sufficient fluids orally. She does also have mental health issues, but the two are not mutually exclusive. People should be able to rely on their diagnoses and treatment plans being respected when they go to a new hospital (because, for example, they move house).

So, I fear that any public ‘debate’ about mental health would distract from the very real problems affecting people who need mental health care, inpatient care in particular, in this country. We have become too dependent on a small number of foreign-owned, profit-making companies and a smaller number of charities who seem to charge a lot of money but provide appalling care resulting in people often getting worse, learning new ways to harm themselves and emerging with fresh traumas that were not there when they went in. We need not only corporate and professional culture to change but also laws, so that disabled people are protected from neglect and abuse.

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