Postcards from the edges of the NHS.

Now that I’ve had intimate, lived experience of how the NHS in England functions within the parameters of Mental Health policy, I feel it’s important to speak out.

It is now more important than ever that people – whether involved with community projects or not – understand exactly how the current system is failing Britain. In yesterday’s blog I gave suggestions as to how one could supplement the NHS Mental Health programme. To-day I’m illustrating some of the stories of NHS patients, and public perceptions.

1.   Attitudes to Mental Health.

I’m sure we are all in agreement that public the perception of Mental Health issues has changed due to more education and exposure to the role mental health plays in the overall health of Britain?

My frequent ‘Victorian’ jibe in relation to mental health care could, possibly, be therefore dismissed as hyperbole. But the reality is that  most marginalized people – of all ages – who are currently experiencing the worst aspects of the failure of the NHS to cope with mental health issues, are those on Benefits. And while the numbers of those on Benefits grows, so do the numbers of people who are mentally ill.  There’s a huge correlation there that doesn’t seem to be an aspect which is given the research which this partnership demands.

The Establishment consideration of people on Benefits is still stubbornly rooted in bygone concepts of the ‘idle poor’, the ‘undeserving poor’, the ‘ignorant’ and the ‘uneducated’ poor.  The “They bring it on themselves” ideology thus appears to have survived overwhelmingly within the national consciousness. It would be ludicrous to suggest there aren’t people in other societies who still hang on to this ideology: of course there are. However, in my experience in the multiple countries in which I have lived, worked and studied, it is only in the UK that this archaic concept of the poor as ‘unworthy’ has any traction.

The dual patronising/deliberate marginalisation  of this troublesome demographic has only become apparent to me over the past two years which I have straddled with a foot in each camp: - that of the liberal and educated Middle Class and that of the bottom rung of societal hierarchy – those on Benefits.

Any attempt to address the problems of attitudes to mental health is wasted in Britain, unless the problem of attitudes to homelessness, joblessness and financial dependency are simultaneously addressed.

2.   Plugging the enormous gaps in the implementation of Policy.

I’ve attended numerous meetings, presentations, launchings and think-tanks at a plethora of organizations since my first introduction to the Future Brighton project.  I’ve studied pie-charts and graphs and mission statements and re-brandings.  Most of them have been clear; provide links to other services and stress co-operation between the various providers.  They read beautifully.

But their effects are limited: there’s no coherent, easily-understood, common paradigm which connects the NHS, charities, the direction of Local Government initiatives, healers, Benefits advisors and the mentally ill.

Of the doctors and professional health carers  to whom I spoke across the city, none was personally aware of the details of any Fifth Sector initiatives  addressing Mental Health. In surgeries there were some advertising and information pamphlets for Mental Health. These were a random collection depending, it appears,  on proximity to a institution which delivers them.  Most of the workers at NHS-sponsored initiatives proved to have only vague awareness of other initiatives, and certainly no lines of  cooperation and/or communication.

Getting help and support in Brighton & Hove is a matter of complete pot-luck : - IF you come across a GP who has the time to listen to you, calm you down, understand your problem, assess your current state, refer to your past history, make a diagnosis, refer you to an area which shows best results, review your meds; put a path to recovery in place …all in 7 minutes -  And IF that GP has a grounding in mental health;  IF you happen to find a GP  who is in touch with an organization/local Government initiative; and IF you mind your Ps and Qs, you may recover. If, however, you have a chronic condition, the chances are slim.

During this journey there are not just huge gaps to fall through; it’s like trying to make one’s way through a giant sieve to disconnected islands.

3.   Clarifying the goal of Mental Health Treatment

In an impromptu vox.pop I asked people who had been through the NHS Mental Health pathways how often the word ‘recovery’ had been mentioned.  Overwhelmingly the response was that they don’t remember it ever being referred to – and never posited as a goal.

Euphemistic weasel-words such as “Wellness”, “Health”, “Coping mechanisms”, “function/functioning’ are all favoured instead.

I am confident that the recommendations to employ these euphemistic platitudes did not come from anybody who is mentally ill. We only want to recover.

Communication.

This could, simplistically, nominate as being the trunk from which all other realities  - including the very real fact of lack of funding -  send out branches and tendrils which are choking the tree to death.

a)written communication from NHS Mental Health.

Currently all have the stamp of what a tertiary educated person thinks recipients across the spectrum would understand.  The result is no less confusing for having been couched in ways that smack of condescension  –  because what they describe is confusing .

  One wonders if the consultants who tried to formulate a form of English which would be easily understood across a spectrum of  i)non-native speakers and  ii)those with learning disabilities, were educators, had a linguistic background, or even a grounding in mental health?

It would be extremely difficult to convince recipients of these letters that it wasn’t just a task dumped on someone’s desk because they’d recently graduated.

       b) Spoken communication from NHS Mental Health

Spoken communication is overlaid with such unconscious class indicators that many patients feel they are communicating with beings of a different world.  Which of course,  many of them are. But to have this fact enforced by face-to-face communication – especially when one’s mental health is already compromised – acts effectively as a shutter.  Patients pull theirs down with “Ah, they don’t understand” and providers pull theirs down with “Ah, s/he doesn’t understand.” Often privately expressed from both sides of the barricade as “Hasn’t got a bloody clue!”.

 If the consultation is happening within a patients house (done for the patients benefit) there’s a feeling of having one’s space invaded by unfriendly and judgemental entities. It feels like violation. I’ve been frequently called to sit in on these home consults as a buffer, because I’m considered bi-lingual. I speak both ‘our’ language and ‘their’ language  - regardless of which side of the barricade one is standing on. In each case, when the consultant leaves, the occupier goes around opening all the windows wide.

One doesn’t need Psych. 101 to understand the significance of this action.

4.   The Huge, Lumbering Elephant in the Room

This is the one that Dare Not Speak It’s name: the role of ‘Class’. Oh, of course it is no longer recognized as a concept in 21stC societal structure. As it’s no longer recognized, we can’t bring it in as an integral factor. To which, with due consideration, I say bollocks.

Now, many people, no doubt, deride the false divisions imposed by a ruling class from which, thank goodness, we are said to have been delivered. However, I, from an expatriate Brit background, have been partly-shaped by other cultures. I state from this position that deliverance from Class considerations is as far-away now, as it was in the encapsulated England my parents took with them on their first overseas posting, before I was born.

I have, as stated before, a foot in both camps. Having been part of that ‘ruling’ class and living now on the lowest rung of the societal ladder has given me a unique perspective as I daily negotiate the world from these simultaneous inputs.

I sit in meetings and listen to projections, ideologies, inventive solutions (and yeah a fair bit of  jargon!) which seem eminently reasonable and exciting.

Then I go home to my council block and listen to why none of the putative recipients of such initiatives react positively to any of it.

And now, after two years of trying to break through all the barriers to try to get help, I fully understand.

A Parallel Experience:

In the late 1990’s I moved from South Africa to Australia where there was also a crisis in the field of mental health.  At that time Australia led First World countries in having the highest suicide rate of 18 -25 year old men. Suicides were continuing to rise on both sides of the gender divide but the loss of young men was considered to be endemic.

It was Rotary International who first decided to take a stand, and to do something positive by raising consciousness of mental health. They announced this through media outlets  all over the country.  They were soon joined by other service clubs and the project began to roll under its own impetus. It helped that, as registered charities, service clubs were able to negotiate advertising space and media backing.

I became involved from the beginning and spent the next few years giving talks in schools, clubs, on radio, to women’s groups, LGBT venues, to street kids and to health and medical workers.

My value as an intermediary between staff and patients was respected as a practical step to combat those barriers that hindered understanding and so recovery. For the first five months my own 18 year old son was incarcerated in a psychiatric unit and I was brought up also against the legalities of mentally ill patients being considered able to make their own choices about invasive methods of treatment.

The first psych unit to consider an ‘interpreter’ was a State hospital, but no objection was put in our way. It was such a successful move that it was eventually formalized and adopted elsewhere.

From the 5^th sector initiatives which flourish around Brighton & Hove it would be entirely feasible to gather and train people, who themselves live with mental illness, in similar roles.

Currently a person whose mental health has deteriorated to the point of being unable to cope with daily life;  who has , or is considering  suicide; who has given in to despair and hopelessness and who cannot marshal their thoughts coherently, walks out of a surgery with absolutely no help at all.  This is, undeniably, inhumane. People who would step in to help an injured animal will send a bawling, hopeless, terrified human being back into the street with nothing more than a vague assurance that someone ‘will be in touch’.

At this point – the first point of contact – there should be no question of what NHS can or cannot afford to do.

THIS is the most important intersection from which a patient – whose mind is not working properly – either walks off to put a suicide plan into place; or accepts that their life will never be the same – from now on they will mentally impaired.

THIS is the point for which initiatives and alternatives;  help, support and empathy is desperately necessary.

THIS is when transparent, easily accessible programmes – with which every doctor’s surgery  and hospital is familiar – can mean the difference between even partial recovery or a death sentence: either under the wheels of a truck; down the path of homelessness and increasing mental deterioration; or into the world of drugs.

And THIS is where people with lived experience, who have navigated the System themselves, who understand both the patient and the restrictions of our Mental Health provisions, and who are neither judgemental nor condescending,  are invaluable.

I remember standing outside my Surgery, sobbing into the lilacs, by a busy intersection, and feeling I had no other recourse than to walk out into the path of the next heavy vehicle to come into view. Not a single other alternative came into my mind during those first 20 minutes.

I’d been to all the mental health initiatives that I’d uncovered: I knew about all the activities and courses each was running; and already had a pretty large folder of cards, brochures and booklets.  But not one single one of them was set up to rescue me from the lilacs and the next 10-wheeler.

Having been diagnosed at the age of 12 as bi-polar I’m reasonably familiar with  my brain deciding to take a holiday and shut down.  At various times in my life I’ve spent time on psychiatric wards when the blinds in my mind closed.  And in each case, wherever I was, this is how it played out: - 

Seeing obvious signs of distress, the staff of my GP surgery would:

 1) usher me into a vacant room so I wasn’t embarrassed in front of other patients, or upsetting anyone else, and

2) someone would stay with me until my consultation.

3) From their desk, the doctor would make arrangements for admission to a hospital, psych unit, or Mental Health facility.

4) Someone then waits with one (To STOP them making a dash from the lilacs to the road) until the ambulance or transport arrived. (Indeed, on an island in the South Pacific – a 3rd world country – one of the doctors himself drove me!)

Being sent out alone, unaided, distraught and terrified into a world  one could not, at that time function within, has never  in all my experience – in any country - been  even mooted. Let’s be clear: it’s cruel, irresponsible, and it’s unacceptable.

As horrifying and inhumane is how those who do attempt suicide are treated.  In the building in which I live 5 people have tried to commit suicide in the past 2 years. One girl, of 21, tried twice in one month. And, if not recently, each of us in the building has tried at some stage, to suicide.

 Each of those people – whether they had taken overdoses or used a knife or weapon – had their physical needs (stitches, stomach pumps etc) attended to and were immediately discharged with no help, no support, no kindness,  to return immediately to the situation they had tried to escape. On two occasions, when the patient had been taken in the middle of the night in their pyjamas with no purse or phone, each had then to walk 5 miles home in the morning in dressing gown and slippers. The enormity of that failure of Duty of Care is absolutely breathtaking.

Is it any wonder then, that it seems to many of us as though the legacy of our Victorian forebears feeds into the current narrative of (lack of) Mental Health care in England?

I have spent my life living with a mental illness and it has never stopped me from achieving anything I set out to achieve. It has never stopped me from breaking new ground, winning awards, being recognised, making wild ideas work, and being a bit of a public figure.

I have spent two years trying to unscramble my head on my own. And now I have come to accept that now I longer have any value to the community. I have come to accept that from now on I’ll just be a marginalized mental health patient: a statistic which wipes out all my humanity. It’s a bitter realization.

Half your luck if you’ve never had a mental illness. But your mother, husband, niece, teacher, child, best friend, will. I eschewed the conditional ‘may’ there because this is a statistical certainly.

Do you want to see the light go out in their eyes forever?

This is an inhumane system and we need to get up off our backsides and shout our head off about it.

THIS IS ME, SHOUTING!!!