EXPERIENCES IN MENTAL HEALTH CARING

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KITH AND KIN (Sixties Press 2004)

ONE CARER’S STORY BY BARRY TEBB

Looking back at the first volume of my autobiography ‘Dancing to Nobody’s Tune’ (Sixties Press 2004) but written in 1990 I was struck by its somewhat dreamlike atmosphere. ‘La vida es sueno’ - ‘life is a dream.’ The world of the dream and the world of external reality are deeply intertwined; in dreams we remember to hope while in life we strive to forget.

    The greatest change in my life over the fourteen years since I wrote ‘Dancing to Nobody’s Tune’ has been the extent to which mental illness has become a central feature in my life. I have been reading psychoanalysis for more than thirty years and I could not have put my time to better use. I began my research quite by chance. When our son Isaiah was a baby I went to a book sale in Leeds and found a ten volume set of ‘The Psychoanalytic Study of the Child’ for ten pounds.

During breaks from helping Brenda with Isaiah (he was a nightmare baby!) I’d been reading from volume one to ten. I really was thrown in at the deep end, studying  detailed analytic texts and articles on metapsycology which I only dimly understood but the

    Even today, thirty years later, I open every new book with semi-mystical excitement and exaltation and I have briefly corresponded with two of the world’s leading analysts, James Grotstein and John Gedo. Analysis doesn’t answer all life’s problems however, nor does psychiatry, its sister science.

    I am not a professional analyst, never having been analysed or trained in the analytic art. However my ‘career’ as a mental health carer would never have worked without the reading.

    The first patient I had detailed contact with was Brenda’s late father, Cyril. When he was sixty two he had a massive breakdown and was admitted as a patient to the Roundhay Wing of Seacroft Hospital, Leeds.

    Cyril’s particular madness erupted into the family like a personal Hiroshima and things could never be the same again.  The memory was like the mushroom cloud that lies forever on the retina of the world’s eyes, molten gases burning and boiling, sending tidal waves over distant shores, poisoning lungs with a seething corruption, shrinking flesh and melting bones until they fused into useless stumps and yet and still yet again there was that one central fact, Cyril’s insanity, which was gradually reduced to an eccentricity, sidelined and denied just as his medical discharge from the army was glossed over because he always had a job.  As his madness grew his thirst for alcohol increased in proportion.  More and more it was his wife’s wages as an auxiliary nurse that bought food for the family and kept a roof over their heads.  When there were whispers of his drunken rages the same lame excuses were trotted out “A man deserves a drink after a hard day’s work,” was the lamest of them all.  The truth was quite different and mundane.  Briefly Cyril had enjoyed a comparatively existence as a collector of broken typewriters for city centre offices.  It was during this period of near sanity that he would gather the shiny black spools which Brenda, the eldest of the children, would horde as her treasure trove.  Perhaps it was the constant contact with others that Cyril began to resent, perhaps the seeds of his paranoia were growing and festering and in the casual glances of typists and office boys he somehow sensed that they might know his secret frenzies so instead he took to digging graves at Lawnswood and Killingbeck Cemetery, in sight of the wards where Kathleen worked nights.  He organised the union and volunteered for the worst tasks standing in a foot of mire stooping to scoop the sodden lumps of soil so that at the end of the day he would be bone weary as he made his way to the Melbourne and finally home like a demon, screaming and cursing and lunging at Kathleen until she feared for her very life at a glimpse of his shadow.

    I wondered what strange thoughts filled his mind as he toiled among the harvest of bones and rotting flesh and heaped wreaths and footprints of mourners and the tyre marks of innumerable hearses?  What metamorphosis did the blurred contents of his mind undergo as he sat night after night drinking himself into blind stupefaction, staggering home to scream hallucinatory hatred as his timid and terrified Irish Catholic wife in the presence of four bewildered children?

    He would come stomping in, his eyes glazed, sit down without a word of greeting and devour his dinner, slump into the fireside chair and stare into the newspapers.  Abruptly he would stand erect and get ready to go out, still without a word.  When he came back, lurching and staggering he would occasionally lunge at Kathleen, who sat with the kitchen door wide open, whatever the time or however cold the weather so she could run out into the protection of the night wind and the glooming streets and the white wall of  Torre Road station.  And when she searched and found the lump in her breast she said nothing to anyone until it was long past being too late and the cancer was teeming through every bone and when she went to St. James to die. Even on the morning of her final departure to St. James with only three weeks to live  Cyril begrudged her the few pennies for her fare, for that would have meant a half pint less and in his tormented spirit there was no shadow of compassion that might have stilled his stabbing tongue or quietened the hatred within.

    By the time I met Cyril he had grown suddenly old and the fires that alcohol quenched could be quenched by it no longer.  His demeanour had become meek and mild and he was always very grandfatherly to the children, humorous and self-effacing and unctuously self-ingratiating until the night when the madness made fires burn in his eyes and he wrote in huge letters over the sink MURDER IN SEACROFT HOSPITAL and he hurled everything he had through the open window in a crazed  whirligig and pounded his television on screen until there was nothing left but a fine grey powder when the police came and took him to the Unit at Jimmy’s with sirens screaming and the old ladies next-door in frightened wonder out on the lawn in their nighties.

    He came home after a few weeks but secretly he stopped taking his chlorpromazine and when the madness built up again he piled the furniture behind the door and refused to let me in.  Eventually I persuaded him to take down his barricades.  His eyes were glazed as through his gaze was fixed on some distant object, invisible to all but himself.

    “Put your overcoat on, Cyril, I think its time you went back into the Unit”.

    “You’ll regret this!”

    “No, I won’t.  Now put on your overcoat”.

And so we walked to the Selby Road and waited for a bus, Cyril with his arms by his sides ready to quick-march in front of the colonel for neglect of duty, the stubble on his chin bristling with indignity we sat in the office of Dr Blackwood, the Chairman of the Department of Psychiatry. Cyril spoke in a hoarse whisper.

“It went on all night long, ambulances and police cars with their lights flashing, doctors and nurses chasing me round the room and ‘im he pointed an accusing finger at me “’im warming’ a white coat leadin’ ‘em on, tryin’ to grab ‘old o’ me”.

The effort of speech utterly wearied him.

    “Mr Williams, I think you need to come in for a while”.

    Dr Blackwood shook his head and pushed forward a form for Cyril to sign, which he did with some small last show of hesitation then he pushed the paper back over the cramped desk top, overflowing with files and prescription pads and pharmaceutical ads on calendars, paper-weights and countless ball-point pens with cryptic messages on the barrels, “Flossex b.d.- the peace of heaven” and “Ditrol makes for the mile-wide smile”.

    In the evenings after the last visitors had left I would sit in the office with the charge-nurse, who told me what agreements there had been amongst staff about Cyril and his diagnosis and I asked if that in itself wasn’t the sign of the borderline state when the diagnosis came it couldn’t have been more final.

    Brenda’s horrendous childhood at the hands of an alcoholic and undiagnosed schizophrenic is something she herself has written of in detail in her wonderful 500 sonnet sequence ‘The Pain Clinic’ so I do not need to detail it here. Although it scarred her deeply she remains very firmly rooted in reality but when both our sons developed serious psychiatric problems her own depression worsened and I, too, have come to depend on medication and a monthly psychiatric consultation to supplement my reading.

     After a King’s Scholarship to Eton our son, Isaiah went on to read classics at Balliol but illness and alcohol addiction slowly began to destroy his gifts. He got a 2:1 instead of the prophesied first and just managed his M.Ed. Instead of going on to a doctorate he was given the prestigious £5000 Newcastle Scholarship (for Etonians who go on to Balliol) and chose to study Bengali at the University of Shantinikatan in Calcutta, which has founded by the great Indian poet Tagore. I wrote to him two or three times a week during the four and half years he was there but never received as much as a postcard in reply.

    He soon went through his money and I had to support him to the tune of twenty pounds a week. Finally the university authorities there insisted he return. I was at Heathrow to meet him off the plane. He had not literally a penny on him, he was self neglected and difficult and very alcohol dependant.

    At first he tried to live with his mother in her flat in St. Johns Wood. It was a disaster as his temper was always on a short fuse and whatever we did it was never right. Abruptly he decided to go to Leeds and live there and a relative found him a damp and depressing bed sit in a back-to-back in Beeston. No other tenant lived there for more than a night but Isaiah grimly remained, declaring it to be wonderfully suited to his needs. We visited him often but he was generally not very appreciative of our visits. He refused to have a TV or even a radio, let alone a telephone. He lived out of tins and drank too much and gradually changed day into nights.

    On May 16 2001 he phoned me to say that he believed his head was coming off his body. I phoned his GP, who said Isaiah had ‘gross psychotic delusions, and set out to visit him. Before he could get there Isaiah’s paranoid anxiety had totally taken him over and he started to run down the motorway towards Leeds. A passing motorist stopped and picked him up. A few hours later I had a call to say he was in A & E at Leeds General Infirmary.

    Soon Isaiah phoned me and asked for my help as the SHO (i.e. a junior doctor) had decided to send him home with a packet of pills. I asked to speak to the registrar but was told the SHO had changed his mind and decided to admit Isaiah. Within a couple of hours he was transferred by ambulance to the Roundhay Wing at St. James, where his grandfather had been a patient twenty years earlier.

    I travelled up to Leeds the next day and immediately went into battle as yet another SHO was bent on discharging him home. I phoned Sarah Fatchett, the Trust’s general manager who most kindly intervened and Isaiah remained hospitalised for six months.

    For many weeks I stayed in Leeds and visited Isaiah on ward 38 first thing in the morning, then went off walking and  writing on Haworth Moor. Gradually he seemed to recover and was transferred to Octavia House, a residential home for recovering psychotics run by an organisation ‘Community Links’ one of the many half-charity, half-business organisations, ultimately answerable to no-one while paid for by the NHS.

    From day one the manager made me unwelcome. Officially the policy was to welcome carer’s input but in fact they insisted that relations gave a day’s notice of a visit. The theory behind the care home was to ‘normalize’ the patients by making them do chores i.e. learn to cook, budget, get up early and learn to ‘interact.’ All this may sound fine but psychiatric illness - especially when it is at the more serious end of the spectrum - is worsened rather than improved by manipulative techniques of this kind. ‘Parent blaming’ was rife and Isaiah was actively encouraged to blame Brenda and myself for my problems, both by the staff and his ‘care co-ordinator.’

    Isaiah’s illness worsened. He sent letters to Brenda and me accusing us of wichcraft and theft and phoned relatives to repeat these distressing allegations. He refused all contact with us and in this state was ‘discharged into the community.’

    He was given a renovated council flat in Beeston. There was no central heating and Isaiah rapidly deteriorated there. I wrote countless letters to a sucession of   locum consultants which got nowhere. Brenda took the last night coach and then travelled to Huddersfield and back to Leeds so she wouldn’t arrive too early and wake him up. Isaiah had become a stranger to both of us. We had lost him as a son and we shall never get over it. His lack of relating to both of us became total and the care co-ordinator accepted his wish to return to India and was attempting to help him get his visa when he had a second and far more serious breakdown.

    Again he was admitted to the Roundhay Wing. He was a ‘voluntary patient’ but his absconding became more frequent, lengthy and dangerous. One abscond was so alarming I had an article about it, together with his photo, put in the ‘Yorkshire Evening Post.’

    After eleven days he turned up in Whitby and was brought back to Leeds by ambulance, not to the Roundhay Wing but to the psychiatric intensive care unit at the Newsam Centre at Seacroft Hospital. This was a turning point and I can never sufficiently show our gratitude to Dr. Tony Zigmond whose brainchild the centre was and who runs Ward 1, PICU.

    At first Isaiah refused our visits but the family systems therapy practised on the unit slowly eroded his paranoid anxieties about our visits. Isaiah was unbelievably ill throughout the four months, upending beds and smashing chairs down on tables (once in front of me). He believes he is ‘the middle-man of Christ’ and that he has ‘a special relationship with God.’  He would stand staring at the wall, talking to God. The problem was and still remains, that nothing really works with Isaiah, so serious is his illness. The best mental health care in the UK, every medication available, constant visits from both of us and three years later his illness is little better. He has calmed down but still occasionally absconds and refuses to get up until teatime, self neglects, believe his medication to be poisoned and rarely agrees to leave the ward or the residential care home he has been admitted to. He has been sectioned under the mental health act for two years.

    He is too ill to be anywhere but on a long stay ward. The long-stay wards at Highroyds have all been closed down and the land sold off for building development. Practically visits there would have been a nightmare as Menston is an hour’s bus journey from the city centre.

    Isaiah’s consultant is Dr. Guy Brookes and his primary nurse Karen Barton. They are two of the best human beings I’ve ever had the good fortune to meet. They, together with Brenda and myself are his team. We meet once a month but in the meantime there is a constant flow of visits, letters and phone calls to let everyone know what’s going on.

    The centre is a model of how mental health caring should be done. Without the centre’s philosophy of supporting carers as well as patients I do not know how Brenda and I could have survived the last year as Brenda’s own care was savagely and I believe illegally taken away by Erville Millar, the Chief Executive of Camden and Islington Mental Health and Social Care Trust in retaliation for Brenda’s campaigning zeal and our determination to see mental health care in Camden raised to the level of mental health care in Leeds.

    It has not all been doom and gloom. I’ve had marvellous help from Dr. Louise Guest, my own consultant and from Sutton Carers. I get a fortnightly visit from Amanda, the Mental Health Carers their support worker and Marion the manager. These three between them keep me going and have helped me ‘for beyond the call of duty.’ An attempt was actually made by one of Millar’s managers to suborn my own team but my attention was drawn to what was going on and there was a sudden shredding of papers at the Camden Trust.

    Leeds Social Services are a continuous source of strength. Dominic Wyatt and Sylvia Landells have been hugely supportive since Isaiah fell ill. I’m afraid Dominic has had to give hours of his time to listening to my unending problems but he is kindness itself. It is people like Dominic and Sylvia that Camden so lacks and of course a Chief Executive like Mike Atkins of Leeds.

    Dealing with a patient as ill as Isaiah can cause hair raising problems. He has a tendency to abscond and on one occasion he did so while his consultant and his primary nurse were on holiday. Worse still he had been moved from the Newsam Centre to a residential care home run by the C.T.R.S., the after care service for very ill patients. When he came back he insisted on being returned to his ward. He was promised this but not a single acute bed was empty in Leeds. Lynne Parkinson, the wonderful clinical service manager at the Newsam Centre, took the burden off my shoulders and had Isaiah back on ward from the following day.

OUR SON

Quarter to three: I wake again at the hour of his birth

Thirty years ago and now he paces corridors of dark

In nightmares of self-condemnation where random thoughts

Besiege his fevered imagination – England’s

Imminent destruction, his own, the world’s…

Sixty to eighty cigarettes a day, unavailing depot injections,

Failed abscondings, failed everything: Eton and Balliol

Hold no sway on ward one, nor even being

‘A six language master,’ on PICU madness is the only qualification.

There was the ‘shaving incident’ at school, which

Made him ready to walk out at fifteen, the alcohol

Defences at Oxford which shut us out then petered out

During the six years in India, studying Bengali at Shantiniketan.

He tottered from the plane, penniless and unshaven,

To hide away in the seediest bedsit Beeston could boast

Where night turned to day and vaguely he applied

For jobs as clerk and court usher and drank in pubs with yobs.

When the crisis came – “I feel my head coming off my body’ –

I was ready and unready, making the necessary calls

To get a bed, to keep him on the ward, to visit and reassure

Us both that some way out could be found.

The ‘Care Home’ was the next disaster, trying to cure

Schizophrenia with sticking plaster: “We don’t want

Carers’ input, we call patients ‘residents’ and insist on chores

Not medication”, then the letters of terrible abuse, the finding of a flat,

‘The discharge into the community.’

His ‘keyworker’ was the keyworker from hell: the more

Isaiah’s care fell apart the more she encouraged

Him to blame us and ‘Make his life his own’, vital signs

Of decline ignored or consigned to files, ‘confidentiality’ reigned supreme.

Insidiously the way back to the ward unveiled

Over painful months, the self-neglect, the inappropriate remarks

In pubs, the neglected perforated eardrum, keeping

Company with his feckless cousins between their bouts in prison.

The pointless team meetings he was patted through,

My abrupt dismissal as carer at the keyworker’s instigation,

The admission we knew nothing of, the abscondings we were told of

And had to sort out, then the phone call from the ASW.

“We are about to section your son for six months, have you

Any comment?” Then the final absconding to London

From a fifteen minute break on PICU, to face his brother’s

Drunken abuse, the police were kindness itself as they drove him to the secure unit.

Two nurses came by taxi from Leeds the next day to collect him

The Newsam Centre’s like a hotel – Informality and first class treatment

Behind the locked doors he freezes before and whispers

“Daddy, I was damned in hell but now I am God’s friend.”

Note: PICU- Psychiatric Intensive Care Unit

          Beeston- An inner city area of Leeds

          ASW- Approved Social Worker

    Brenda Williams, my ex-wife, is an internationally known poet and a mental health campaigner. She is also a mother of two grown up sons. Because of the severity of our son’s illness her depression has worsened over recent years, which is hardly surprising. A survey showed that the diagnosis of schizophrenia in an adult child impacts more severely on parental health that would the same child’s death in a road accident.

    Brenda’s need for support from the Camden and Islington Mental Health and Social Care Trust Board was never more critical and it is to their everlasting shame that they failed her utterly and had we not together fought their decisions she might have ended as another suicide like her friend, the late Christine Blake who was told she ‘was using too many resources’ and hanged herself in her flat a few days after she was barred from using the facilities of Fordwych Road Day Hospital. Ironically her flat was in the same street.

    Christine had been a senior social worker in the field of the elderly until depression struck her down. She came to depend on Fordwych Road Day Hospital for her survival. Day hospitals are the corner store of the NHS mental health system, allowing patients to attend on a daily basis five days a week, be involved in group work, art therapy and other activities. Over a seven year period Brenda spent long periods of time there, doing art therapy which is all, apart from writing poetry that has ever helped hold her depression at bay.

    We attended Camden Coroner’s Court for the inquest on Christine Blake’s death. It was a cruel force and lasted only a few minutes. The psychiatrist who had been in charge of Christine’s care didn’t bother to turn up. Nothing of to the circumstances leading to Christine’s death was revealed. Our letters to Dr. Stephen Chan, the coroner, were met with silence. Dr. Chan wanted the job but not the work and was subsequently sacked after a number of complaints, ending in his mishandling of the inquest of one of the victims of Anthony Hardy ‘The Camden Ripper.’ Dr Chan has subsequently disappeared to live abroad.

    A friend of Christine told us she had been promised there would be an internal inquiry into her late friend’s death but we soon learned these were done automatically and, of course, were confidential, which is very convenient for the Trust.

    Camden and Islington have the highest number of suicides and the highest number of violent incidents annually in the UK and one reason why the ‘fused Trust Board’ of both Camden and Islington and the two council social services departments was created to try and improve mental health care in the area. Recently the council has set up a Scrutiny Panel to look at the local suicide rate but again it is being held behind closed doors, as though the dead might care about confidentiality!

    Previously Brenda’s care had been under the Dept. of Psychiatry at the Royal Free Hospital. She had two wonderful psychiatrists in Drs. Sargent and Campbell, both now retired. They gave Brenda tremendous support and encouraged her to do art therapy and to write poetry. When Dr. Campbell left a locum consultant, Dr. K--- was appointed. Unfortunately this interregnum coincided with one of Brenda’s rare periods of hospitalisation. Dr. K--- was brusque, in her manner and had only a temporary contract with any hospital. At a ward round she told Brenda that ‘No one need suffer from depression for more than eighteen months’ said that ECT had been considered but that lithium had been decided upon instead.

    Brenda telephoned me to come urgently. The SHO warned me that Dr. K. was about to section Brenda, illegally in his opinion as her condition did not warrant being sectioned. He advised me to take her off the ward, which I did with alacrity.

    I complained to the GMC about Dr. K and she was warned to watch her step. It turned out she had an alcohol problem and mental health problem of her own and has not being employed since.

    Brenda eventually returned to Fordwych Road  day hospital but her peace there was to finally and irrevocably ended by her decision to write a poem about the tragedy of Christine Blake. Nicholas Bielby, editor of the ‘Pennine Platform’ praised the poem and published it in his magazine. I bought 50 copies and we gave one to every member of the Trust Board. This did not go down well because the poem is so powerful.

IN MEMORIAM CHRISTINE BLAKE

1

When I summon together all the chance

Encounters that have existed between

Us, trying to weigh them with the distance

Of things unsaid, the unlit future seen

By you alone, there was so little to

Go on, you seemed to be living only

In the interval of time before you,

Slowly foundering, clinging to any

One who would listen, but we could not hear

Or see as you were swept by a current

Too far out to reach, something beyond fear

Failed to prevent what you finally meant,

Left to mutely disappear without trace

Suspended from a life you could not face.

7-11 April 2002

2

Alone on Tuesday morning just thirteen

Weeks into the year, the first day after

Easter, you put an end to what had been

An unmanageable existence, where

Another afternoon another night,

Was not within your reason or the span

Of things, whatever intercession might

Have happened, it was too late.  As a fan

Too widely opened you could not get back,

The separate panels of your life were

Locked into place, a surface on the rack

Of being that yet could go no further

While the arc that held it all suddenly

Gave way to the last trace of its story.

11-12 April

3

Even your death was as though for a crime

You did not commit, then left to hang there

Already too late, without enough time

Left over between before and after

Just to turn about and run the distance

Of your own road to the day hospital

Only yards from your own door, beyond chance

And equilibrium left unequal

To the task.  It would remain a journey

You would never make, even the words failed

Leaving you unable to ask or see

The day outside where darkness within trailed,

Something beyond fear was all you could hear

And the silence of it hurrying near.

11 April

4

Our Lady’s Candles were still emerging,

Chestnut leaves unspread, recently broken

Under hazed green smoke, were slowly drifting

Upward through the grey pall of winter when

You suddenly turned away from it all.

A single candle in the space behind

You at the last lap of your funeral

Burned through the terminal silence, your mind

A plan, a last mechanical journey

Into an inferno that would enfold

You with intangible reality

As you passed before us into the hold

Of time where sunlight and material

Darkness broke from the cordon of April.

14 April

5

Even meaning somehow seems to fall short,

Words that refuse to adhere to a page

Fear to bear the weight of the way you fought

To live or the uncomprehending rage

For the way you would die, all the panic

That happened that the years could not amend

And night and morning broken by the tick

And sound of a countdown right to the end

When you could then reckon on your fingers,

On one hand all the people still installed

In your day, a collective guilt lingers

And it will not go away, your life stalled,

Reduced to fashioning an open noose,

Oblivion from which you were cut loose.

25-26 April

6

It was all over by the time they broke

Through the door and final as a cry for

Help that came too late, helpless in the spoke

Of light mutely entering the heart’s core

As someone began to knock on your door,

The only barricade against a world

You simply could not cope with anymore

Left to its silence with the end untold

And left for others to find or fathom,

To sound the days you could barely get through

As one by one all the things you had come

To depend on were kicked away from you,

Too weak to fight you tried to surrender

To ransom what you could not remember.

27-28 April

7

Only thirty days ago was the last

Day of Easter and the long awaited

Opening impact of April, a mask

Beneath which you struggled unabated

As you went for a walk for the final

Time in Regent’s Park and where even while

Accompanied as on a casual

Outing your mind was trapped in a trial

For your life on your last full afternoon.

Who judged you that you should die by your own

Hand or ordered that your death come so soon,

Was there no defence as you stood alone

No one to witness your execution,

With no last reprieve after hope had gone.

1-2 May

8

Who will pay Charon now for your spirit

Taken before its time without tender

Or absolution from a place unlit,

A closed unvisited ruin a world

Where hidden beneath unshifting bending

Girders exists a brief reality

Where the bewildered heart can find no rest

Or refuge, a surface without any

Vestigial foothold or anything

To cling onto, an interval after

With no origin, recurring untold

Without end where the spirit unrehearsed

Is left to its first silence, left to the

Shadows that lodge on the banks of Lethe.

1-8 May

9

NO LAST REPRIEVE

You became just another unmentioned

Casualty of the drawn out chaos

Resounding around you pursuing you

Even to the mouth of the far harbour

Where you sought for refuge from a breaking

Storm gathering endlessly before you.                                                               

Found to be wanting, you were judged to be

Guilty, accused of using too many

Resources, the therapeutic structure

That had been keeping you afloat keeping

You from slowly drifting too far out was

Suddenly taken away from you, shunned

And left to an inexorable fate,

Left there to wait until it was too late.

21 June 2002

10

Instinctively we kept to the distance

Left between us too afraid of being

A burden to each other but you were

The focus of a gravitational

Force which seemed to ebb and flow around you

Whenever you were there. I remember

An ordinary afternoon and you

Were talking about Art and Augie March

And almost seemed beside yourself with an

Overflowing feeling for everything

That day, you were so relieved to be there

It was as though you had been rescued from

Something left unmanageable, I see

You still in a crowd ineffaceable.

11 February 2003

    Although the public are allowed to attend Trust Board meetings very few do. Questions are only allowed by submitting them in writing and the Board’s Chairman, Professor David Taylor, refuses to accept any awkward questions. Taylor’s background is not one which inspires confidence. He was a Common’s lobbyist for the pharmaceutical industry who made a sudden move to occupy a newly created Chair in pharmaceutical public relations at London University. In an unguarded moment I heard Taylor saying how much anger there had been at his appointment.

    Together with Erville Miller, the Trust’s Chief Executive, these two run the Trust as their personal fiefdom and have since it was set up. Camden Council Social Services Department gradually lost all clout and when Miller cut the meetings of the board by half there was only token resistance.

    Basic lack of guts is what continued to characterise the behaviour of Trust Board members. As Churchill said, ‘The price of democracy is eternal vigilance.’ Vigilance was the last thing the Board exercised or wanted anyone else to exercise on their behalf. Brenda and I discovered that planning permission for a seven storey block obtained several years before was to be used in a highly improper way, Millar and his clique entirely altered plans to exclude two new much needed day hospitals and replace them with lavish expensive offices and nursing accommodation. I wrote letters to Camden Council and Millar’s plan were sent back to the drawing board. We were never forgiven.

    Camden has two day hospitals and Millar was determined to reduce this to one. Brenda did a thirteen week hunger strike against the proposed closure and eventually the Area Health Authority backed us and Millar had to drop the plan. We were user/carers inputting into the service, exactly as the government wants but Brenda was to lose her care as punishment for our outspokenness.

    I complained and Brenda’s fate was sealed. Her consultant, Dr. J, finally told Brenda that she was losing her team and access to the day hospital. Getting rid of ‘awkward patients’ to their GPs is a scandal which I have written to Professor Sir Ian Kennedy, head of the newly formed watchdog body, the Commission for Health Audit Inspection, asking that this particularly dangerous practice be subjected to scrutiny.

    Brenda’s GP felt her depression needed access to the services she had lost and referred her back but to no avail. From August 2003 to the time of my writing this in May 2004 Brenda’s care has been non existent.

    Eventually I managed to contact Rosie Winterton, the Minister for Adult Mental Health but ‘the system’ works against direct ministerial involvement in what are seen as ‘local issues’ and John Hutton, another minister in the Department of Health used all his clout to stop Rosie Winterton being involved. I reported the matter to the Ombudsman but it will be months before they can come to a decision. The staff at ombudsman is excellent but their power is limited.

    Erville Millar represented the Trust to the media after the discharge of Anthony Hardy, ‘The Camden Ripper.’ He blamed everyone but himself, stating that the vital reports advising Hardy’s continued sectioning had been ‘delayed in the post’ and wouldn’t have had any effect on the decision to discharge Hardy anyway. The internal inquiry set up to investigate Hardy’s discharge has decided to exclude Millar from their inquiry but five months later the terms and conditions of the inquiry have yet to be announced.

    I do not think Millar is fit to hold public office, nor is Professor David Taylor, his chief ally. Their behaviour has been scandalous. Their human rights record as regards taking away of treatment from Brenda is a disgrace.  

    Things are much better where I live in Sutton and immeasurably better in Leeds. The rot sets in it usually at the top. I believe Millar and Taylor should be made accountable and neither should be allowed to continue in their present posts.

    Brenda has twice in the past become suicidal and now has nowhere to go, Our son’s illness (he has been continually ill for three years) has made her depression worse, which seems to surprise no one except Millar and his cohort.

    They do have an answer. Brenda received a letter telling her ‘Go and find your care elsewhere.’ Brenda lives twenty yards over the Camden/Westminster boundary. Her GP is in Camden and he refers patients to the Royal Free. ‘Cross boundary patients’ are accepted on a ‘trade off’ basis and this was yet another excuse to send Brenda on her way. Brenda has made friends among fellow patients for a decade and the art therapy she so vitally needs is not available in Westminster where the day hospital is ‘sessional’ e.g. patients are allowed in for just an hour and then have to go home. Brenda, like many others, needs all day care and the with holding it by Erville Millar is an act of consummate inhumanity.

    From April 1^st 2004 a London-wide agreement of Strategic Health Authorities abolished borough boundaries and made the referral to care dependent on the GP’s decision alone. Brenda’s GP, Dr. McNicholl, responded to this change by promptly striking her off his practice list where she’d been a patient for two decades!  The way forward for the NHS is to provide ‘user carer’ involvement at every level but this needs to be enforced when resistance is shown. 

    Millar and the Chief Executive of the London North Central Strategic Health Authority, Chritine Outram have joined against a vulnerable patient because she has dared to protest, like Oliver asking for more.

    I think Brenda and I have enough on without having to fight people like this. I have campaigned unceasingly by telephone, fax and letter throughout the NHS. Most of those I have contacted are as appalled as I am. They know ‘these things do go on’ but nobody knows how to stop them. Let us hope Professor Sir Ian Kennedy and his team take on board the gist of my letters to them and we see sanity reigning in Camden and the back of Millar.

    Brenda’s last bit of care, one hour per fortnight, was provided by Camden Community Links. This was ended abruptly and the blame put on the office of the Deputy Prime Minister’s office. This was a lie and was refuted in a letter I had from the ODPM (Office of the Deputy Prime Minister.)

    The government has set up a Commission for Patient and Public Involvement and I took Brenda’s case to them but heard nothing back.

CCMHSC Trust has flagrantly gone against government policy and the restoration of Brenda’s care is a battle I will not stop fighting for. I have included the sonnets on Christine Blake’s suicide because she had been denial access to the West Hampstead Day Hospital in Fordwych Road. She hanged herself in on April 2^nd 2002.

    Camden has the highest suicidal rate of any UK Trust and the highest rate of ‘violent incidents’ (recent report from CHAI).   

One Carer’s Story - Barry Tebb       Schizophrenia - A Carer’s Journal - Mike

     Schizophrenia – A Mother’s Story – Georgina Wakefield                         My Journey Of Sadness – Stan Hagon

                                       The Voice Of Carers – Amanda Cummin           Yemeni Carers’ Stories – Debjani Chaterjee

   Beyond Our Reach, But Not Our Love – Brian D’arcy                        Carry On Caring – Emily Machin & Lucy Machin

     Enigma And Other Poems - Georgina Wakefield                        Killingbeck Drive – Brenda Williams

      Searching The Beyond And Other Poems – Daisy Abey     Sharp Edge – Daisy Abey     The Long Good Bye – Barry Tebb

      Looking Back – Barry Tebb     Nameless In Camden – Brenda Williams      Autobiography – Simon Jenner      

The Sick Image Of My Father Fades – John Horder      Are You A Carer?      Caring About Carers