MADNESS IN THE UK PART 3: NHS Mental Health Provision is Mental.
By Sue Denim –
The Past – Living in Ignorance
I live in the UK. I can remember my first experiece of someone close to me being mentally ill when I was 10 years old. It was 1971. I was told my Auntie had been put in the ‘Loony Bin.’ There were adult murmurings of her taking her clothes off in front of the post-man. She had literally been taken away by men in white coats in the back of an ambulance. Terrifying. She came to our house on a day release visit all puffy and zombified from the heavy anti-psychotic drugs they had given her. Everyone said she was a manic-depressive. She would be on a drug called Lithium for the rest of her life.
A few years later at a family do when I was in my teens, I asked her how she was doing. No-one really talked about it. She said she felt flat. Never happy, never sad. Emotionless. My parents split up and I didn’t see her again. Some 40 years later my mother had been in touch with her due to some family crisis. She had moved house and had a new GP. Her old GP had been giving her a repeat prescription of her medication for years. She accepted that was how it was. When her new doctor did blood tests (etc) he found her liver and kidneys were damaged and misfunctioning, and her lithium levels were ridiculously high. He halved the dose and she felt amazing for the first time in 4 decades. She felt pleasure, took up gardening, and her life became enriched. Although living with the physical effects of the damage caused by years of inappropriate medication, she now has some quality of life beyond merely existing. However, the damage had already been done, and she passed away soon after.
Many families no doubt have similar stories that they don’t talk about. What scared me most was I knew it could have been me being locked away. I wasn’t like most other ‘ordinary’ people. Neither was my hero David Bowie.
David Bowie – All the Madmen – The Man Who sold the World. 1970
The Present – Are we actually less ignorant?
Today there is a general consensus in UK society that things in the NHS Mental Health service are far better than the days of the old Mental Asylums. However, although this may be true in some areas, no-one can deny that current NHS Mental Health Provision is at breaking point, and in most cases, not fit for service.
More money is obviously needed to improve Mental Health Care provision. In fact Theresa May, the virtuoso of ‘virtue signallers’, also got on board with this. My view is that without any real overhaul and courageous critiquing of what we presently have on offer, money is not enough. This is just a case of yet again setting sail to a sinking ship. That sinking ship is already jam-packed with past desperate and ignorant self-interested and deluded mental illness empathy posers. Sadly, they will not succumb to the same watery grave of truly desperate people fleeing war in the Middle East. They don’t care about them. They will be rescued by a crew of political strategists who will put them on another more luxurious ocean liner (of the pocket), then continue their journey on the current band wagon.
The Strategies versus the Realities of the NHS Mental Health Service.
Supposedly our National Health Service’s Mental Health provision is, yet again, under scrutiny. We are hearing the ever repeated call, for Mental Health to be treated with the same status of other ‘Physical Health’ provisions in the NHS. Theresa May’s actual proposition was that she is going to ‘find money’ for the current provision, as well as prioritise increased funding for ‘raising the awareness of mental illness.'(1) As ever, there is no explanation of how this will be effective, what it will fund, where it will be located, and most importantly why they are funding what they will be funding. Short term, sticking plaster fixes on an already badly wounded and totally inconsistent service is a waste of time. We need a political will to support some kind of realistic and effective vision. Supposed vote winning policies do not necessarily translate to anything useful for people who are service users.
The greatest irony is that a few weeks after this worthy announcement she declared that she will not be including people who are mentally ill to be worthy of being awarded the “mobility element” of the new Personal Independence Payment (PIP) benefit. The fact that many, myself included, find it nigh on impossible a lot of the time to leave the house without someone with them, and many conditions cause people to be trapped within four walls for months or even years, thus relying on carers / helpers to fetch and carry for them, is being negated. This overrules a recent court decision that would expand the criteria to encompass lack of ability to be out and about in the world due to mental illness.
My fear of being locked away in an asylum aged 10 was not unfounded. By the time I was 23, I was an outpatient of NHS Mental Health Services after a total nervous breakdown, cracking-up and going mad. (In contemporary parlance of the polite circles, I experienced a mental health crisis.)
Those of us who have been sucked into the NHS Mental Health Services due to necessity, all deserve medals. Only the rich have other options. As a user of most strands of the service at various times over the last 30 odd years, I can report back that since the closing of the Asylums, and the “Care in the Community” initiatives in the early 80’s, provision is still cumbersome, incoherent and top-down. Nothing much changes or can change. The whole system is still based on outmoded models and conflicting approaches. It has always been overstretched as much of the money goes on oiling this large bureaucratic machine, where the top-dog consultants and highest layers of officialdom reap the benefits. There are regular staff restructures, (AKA imposition of financial cuts.) ‘Experts’ are employed to write weighty (and expensive) new strategy documents, which are more often than not, handed out, read through once, and put on a shelf to gather dust.
They move services about to different buildings. If you’re lucky you might get a new coat of that sickly green paint much beloved in psychiatric department waiting rooms. Sometimes you get an artist in residence to do some happy paintings for the walls in the wards. The staff teams are reorganised and moved around, and their job roles relabelled and workload doubled.
Mental Illness obviously covers as wide a spectrum of health conditions as Physical Illness. It can range from mild stress, where you may need to take some time out, (the equivalent of a bad cold) to life impacting and life long conditions. A serious and sudden onset of a sudden psychotic condition when you have never had any mental illness can be equivalent to contracting cancer. You may well recover with the right care and treatment. Within this wide spectrum of altered mind states caused by all kinds of triggers, ranging from biological to environmental, a lot of treatment necessarily has to be hit and miss and trial and error. Medical science, research, knowledge and theories are constantly evolving. There are all sorts of self-interested parties who tend to promote and deify certain treatments over others. As with any health conditions much of medical research is carried out by huge pharmaceutical companies who often peddle the theories that necessitate that their products are the answer.
Rational thinking and common sense tells us that there is an obvious link between physical and mental ill health. The mind and body are connected through our nervous and immune systems. We also acknowledge that serious mental illness affects who you are, how you act, your personality, your emotions and your actions. You do not behave like most people who are in control of their mind. You behave like a crazy person. You can scare people. You can confuse people. You can cause all kinds of destruction in your own and other’s lives. You can seriously piss people off. You can be a danger to yourself and others. Civilised Society has long since come to a consensus that you need to be ‘controlled’ if your dysfunctioning mind cannot keep your behaviour within accepted boundaries. Again, this makes sense if you may be a serious threat to yourself or others. We have not changed that view since the days of straitjackets and locking people up.
The Treatments Available
In my experience, one of the main issues and frustrations within the Mental Health Service are the clashing views, incoherence and inconsistencies regarding the best treatments. On the one hand, this is understandable. As yet there is still very little consensus around what causes and constitutes madness. Try and navigate all this with very little control over your choices. Most of the time you just have to accept what is randomly offered in a desperate attempt to help you feel back in control of your mind. What is offered is often not the solution.
If you feel that you are not coping emotionally, or that you can’t control your mind to the extent that it is impacting on your everyday life, you are initially offered medication by your GP. This treatment is often used to try and quickly “fix” the problem in view of the limited time available in GP surgeries. These drugs can include various anti-depressants which work in different ways, sleeping pills, and minor tranquillisers. If you do not respond after a great deal of time, or if you exhibit symptoms that are extreme, you may eventually be referred to a consultant psychiatrist based at a Mental Health Unit. It is important to note that many people in a severe psychotic crisis are so off the scale and in a permanant state of delusion that they would not consider that they even need to see a doctor. Friends and relatives are not able to get them help unless they agree to go to the doctor. This means even if you can see a loved one becoming worse and worse, you are helpless. Until something drastic and dangerous happens, they will not be seen by a Mental Health professional. Unless you are deemed to be in crisis, waiting lists are long. I waited about a year back then, but nowadays having to wait 18 months is quite common.
Once you are “diagnosed” you get offered up an even wider choice of psychiatric medication, to focus on ‘rebalancing chemicals’ in the brain. No individual responds the same way to the same medication, and mostly it is all trial and error and experimentation. As the consultants are deemed to be the experts, they have even far more powerful drugs at their disposal. These include a wide range of Antipsychotics and Mood Stabilisers. You inevitably end up with a cocktail of drugs that work in different ways, and every time you have a wobble you have to readjust your medication. They can spend months trying to get you on an even keel again. Then there are the potentially life changing side effects of most of the medications. These are strong chemicals.
This brings to mind the classic image of a zombied mental patient, drugged up to be kept under control, not able to really function in life. I have been there. I have never met anyone who has survived the system who hasn’t been stuffed full of drugs that knocked them out, and had a worse effect on them living a decent life than the supposed illness. However medication, if it suits, can be invaluable in some circumstances. It can enable you to function far more effectively than you could without it.
Medication time Scene from ‘One flew over the Cuckoo’s Nest’ 1975 directed by Milos Forman from the book by Ken Kesey.
- Talking Therapies – Psychologists versus Psychoanalysists.
In the NHS, you can be referred for therapy as an alternative to drug treatments, or in addition to drug treatments. There are a wide range of talking therapies available, led by a diverse bunch of therapists. You might be sent to a psychologist, who would focus on your experience, the way you think, and changing habits and behaviour through a range of talking therapies. These take a more practical, collaborative approach, offering psychotheraputic tools for unhelpful, disordered thinking. The treatments include therapies such as Cognitive Behavioural Therapy, (CBT) Dialectic Behaviour Therapy, (DBT) Mindfulness, Hypnotherapy, more generic counselling as well as many other variations on the same theme.
Then we have the psychoanalysts. These therapies are in depth and embedded in a wide range of often clashing psychoanalytic theories. They emerged from Freudian analysis, and were built on by people like Jung and Lacan. You are invited to revisit your past and analyse how those experiences can effect how you think, feel and behave in the present. Nowadays, the psychoanalysis of choice is Psychodynamic Therapy. They start with various theories of personality organisation and their dynamics. Treatment through the NHS with this form of therapy lasts between six to eighteen months. If you can pay privately, it can go on indefinitely.
Historically, these two approaches have always been at odds and are still often pretty antagonistic to each other.
Both psychologists and psychoanalysts obviously believe their approach is superior. They are fighting for the same pot of money. The truth is again, most of what is offered is trial and error. In the end we are talking about individual human beings, with different personalities, temperaments, and life experience.
Going over and over your past which you can’t change, and revisiting trauma can actually make you feel more vulnerable. An ‘expert’ is analysing your past life which is often distorted by false memories. In my experience, seeing as you cannot change anything in the past, going over and over stuff just disempowers you and ironically keeps you stuck in your past. It may be useful to reframe stuff and get rid of some guilt and let go of anger, but this easily sinks into becoming self-absorbed and feeling more and more sorry for yourself.
Annie Ross – ‘Twisted’ 1960
Where are we now?
Lest we forget nothing in this field is, or can ever be, an exact science. In fact, you could argue it is more like an Art. Any diagnosis is within a spectrum. Current research does identify genetic and hereditary factors which can result in psychological disorders, but socio-economic factors and traumatic life experiences are inevitably thrown into the mix, as are individual temperaments. Some of the Mental Health services and treatments received are invaluable, effective and literally life-saving. Some are horrendous, inadequate and a waste of time and money.
Mental Health Services simply need to respond to the concerns of individuals, and be consistent and tailored to our particular needs. It needs to be affordable. We need to be trusted to accept, take control of, and have responsibility for our condition, whilst being offered financial and practical support as necessary. Within the current system and structures this is nigh on impossible.
Rip it Up and Start again.
During the Cameron regime, there was another one of those ‘impressive’ and thorough NHS Strategy documents produced in Feb 2016. Many service users were consulted through the charity “Rethink” as part of a mental health task force. In partnership with the mental health charity MIND they engaged with over 20,000 people through a national survey and workshop event.
Key recommendations included:
Secure care: better approaches to commissioning so that people do not stay longer than necessary in secure or other restrictive settings.
Access to high-quality services close to home: ensuring that local community services are immediately available so that people experiencing a mental health crisis do not need to wait. If people need to use hospital services, they should not have to travel out of their area for the right care.
Co-production: people living with mental illness and carers should be involved in the design and delivery of mental health services.
Prescribing: new standards for health professionals who prescribe medication to improve the way they involve people in decisions about their treatment.
Better carer engagement: health professionals should be trained to better involve carers. Services should also have to show evidence that that they effectively engage with carers as part of their inspections.
Action on physical health: people with mental illness should get enhanced help with their physical health through better screening and lifestyle support.
Research: calls for a 10 year strategy on mental health research, including details of the funding commitments to make this happen.
This has no doubt induced head nodding, a few discussions where people agree and disagree with the findings, but will mostly be ignored except for the bits which prop up certain political agendas. The Key Recommendations are common sense. Without the courage of political conviction these are not achievable. There is no real will amongst the political elite to do something that will be time consuming and difficult. The problems are systemic and difficult decisions and making radical change inevitably leads to fear and dissent. There will always be a backlash. This does not translate to votes. Any changes to any aspect of our NHS are a political minefield.
If you are seriously ill you will need intensive care, just as you would with physical illness you will be hospitalised. You can be a danger to yourself and others. Many have had such bad experience in these hospitals that they do anything to not let on that they are ill. If you are concerned about a friend or family member, the GP cannot intervene unless that friend or family member asks for help themselves. They don’t want or believe they need to go to hospital. The nature of serious altered mind states is that you don’t think straight. You are not sane.
If you are lucky, you may be placed in a hospital where your loved ones are near enough to visit. After a hospital stay, you will be sent home with little or no follow up support carrying a large paper bag full of assorted medication and a piece of paper with a future outpatient appointment.
You are often pushed out of hospital far too early as there is an acute shortage of beds. Community Mental Health Crisis Teams and Community Psychiatric Nurses now have to run on a skeleton service. In my area, 4 area community support teams have been reduced to 2. Staff were made redundant and those left have twice the workload.
If you are not be deemed to not be so ill as to need hospitalisation, it is a given that you can struggle to cope with your mind and looking after yourself in terms of everyday self-care, cooking, organisation of any of your affairs etc. You often can’t even leave the house or your bed for that matter. At these times you can reach an extremely dark place made worse by feeling guilty as you have to rely on others (if you have family and friends around you of course.) You feel totally useless and feel everyone would be better off without you. You just want it to end and sadly that state of mind can push people to suicide.
Many people in this position literally have no-one. Such is the nature of mental illness you often lose friends who can’t cope with you on the way, however good their intentions. People with long term recurring conditions are not easy. This does not make people who can’t cope with them necessarily uncaring bastards. It just means that they can’t take someone on who may need a lot of support that they don’t have time to give.
We currently only access to 10 minute visits, often with different GP’s, who mostly only have time to dish out meds. If you are super lucky because you were once considered to be so ill to need a referral and an ensuing diagnosis, you get 6 monthly appointments to out-patients to see a pre-designated and ever changing stranger / consultant. The only thing they know about you is a brief flick through your records. You may get more advanced medication and a referral to whichever thanking therapy the consultant has a penchant for.It is inevitable you will have approximately 18 months to wait for this.
Its not rocket science. It would be extremely efficient for those who are not a danger to themselves or others, and don’t need to be in secure care, to be able to access a small locally based ‘retreat’ where you can simply take some time out from everyday responsibilities. This would also obviously be available to those leaving hospital. Sometimes when you are feeling overwhelmed by your own insanity that is all that is needed. This can prevent your mental health from deteriorating leading to more extreme (and expensive) interventions.
The fact is that these ‘retreats’ are already sporadically littered around, run by charities who are always short of money and in fear of having their funding cut. Meanwhile, money is being pumped into services that are far less effective. The most successful ‘retreats’ run as places you can self-refer and stay in up to a certain time. This very importantly trusts you to have the responsibility and control of your sanity in your own hands. When you are in an episode or changing medication, this model has been proven to be really helpful.
These retreats engage people in doing things that are productive, like running the cafe or other practical tasks to give their days some structure and meaning. They run group sessions where you can offload with people who get it, without feeling guilty, and talking therapy with someone who you have built a relationship with, and who has come to understand you as an individual. You don’t have to be living in pyjamas. There are health care professionals around but responsibility for recovery is shared. By the way, the rich already know this as they can readily afford to take themselves off to places like the Priory or the Swiss Alps. If they have a relapse they can just book themselves back in. This model is not more expensive than current provision, and it can provide some time to get back in control with safety nets.
Initiatives like this just need courageous professionals in Mental Health Care, as well as those that hold the purse strings, to take a risk and roll them out over the country. It may take time and lots of reorganisational difficulties, but no change is easy. Keeping things the same is not working. It is making things worse. Thorough and honest communication campaigns can easily help avoid the backlashes, as well as involving mental health care charities and service users to explain why this would be a good thing.
There are many amazing Mental Health Care Professionals I have met along the way. They are mostly extremely frustrated, but they still survive and carry on, much like the users of the Mental Health Services. The NHS Mental Health Service needs to exist out of the borders of the Mental Health Units. Preventative and more instant care at a formative age can lead to removing an accumulation of problems as you get older. It is bloody scary when you are hit with an episode of mental illness. Remember, ignoring people who are struggling, patronising them, and deciding you know best hasn’t worked out too well.
If you don’t listen, the lunatics will be taking over the asylum, and WE will do a better job of it than you.
Fun Boy Three – The Lunatics have taken over the Asylum 1981
This is part of the MADNESS IN THE UK series interrogating the issues surrounding the subject of Mental Health and Mental Illness. My knowledge and experience has evolved out of managing a long-term mental health condition. It has been much more difficult to write about this than I thought, as it has necessarily made me focus on one aspect of myself that I do not want to be identified by. I manage my health condition and it is part of who I am, and a bloody cross to bear at times. We all have crosses to bear. This series is a starting point for some new conversations and ideas for reframing the subject matter, and offering some explanations and solutions for some of the prevalent issues.
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PART 1 ‘MEDICALISING MADNESS’