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Peter Beresford

3 October 2005

This has been a very emotional week for me, one
leaving me with a strong sense of happiness and contentment as I
write this. As readers may have realized already, it isn’t
only sadness that makes me cry! There have been things for me to
celebrate this week, both about the beginning of life and
life’s endings.

Although both of these have involved a lot of laughter and joy,
they have still brought tears to my eyes. I’d like – as
competition judges say – to present them in reverse order.

First a session at the international Help The Hospices
Conference: ‘Hospice Care – unlocking the
future’. I was proud to be involved in a question time
session that offered a chance for service providers and
practitioners to find out all they ever wanted to know about user
involvement from a panel of service users.

A social worker came up to us afterwards and said that two young
practitioners had asked her to tell us that before the session they
had been worried about user involvement and weren’t sure how
to take it forward. But they wanted service users to know that they
felt much more confident afterwards and in a much better position
to take things forward. Praise indeed and well deserved by the
panel in my view. The panel was made up of Mandy, Anne, Munir, Di,
Dave and Karen, with ages ranging from 43 to well into the
seventies. What a range of skills, insight, experience and
expertise they brought to the occasion.

All of them are people who are using or have used palliative
care services. All have been affected by life limiting illnesses
and conditions. All with so much wisdom to impart from lived
experience to help practitioners and improve palliative care
services. What was great about the session, apart from the humour
and sense of empathy and equality, was the great feeling of shared
commitment it conveyed from both service workers and service users.
You could see how ‘partnership’ – a much misused
and devalued word – really could have meaning between us in
our different roles and with our different perspectives and
understandings. This session, as far as I know was a first and I
for one was proud to be there. Let’s hope it signals much
more positive work to make user involvement real in palliative care
– an area where there are particular ethical, practical and
personal issues to be addressed.

Now the second item of news. Our daughter, Catherine had her first
baby (as yet unnamed) earlier in the week. She was born at 11.17 on
Monday 26 September, weighing in at 7.2 ounces (see photos attached
taken immediately after the event) This event made me really
anxious, even when the surprisingly rapid labour was over and
Catherine was fine – exhausted, but over the moon. But then I
am not very good at working out my own emotions. Like a lot of
other mental health service users, I just try and deal with them
and it was quite a job last Monday. I am really pleased for
Catherine and her partner Matt. I hope they have as much joy from
their daughter as we have had from Catherine and our other three
daughters.

Peter

26 September 2005

Something has just happened which I believe could create a
fundamental challenge to existing psychiatric assumptions about the
relationship between ‘mental illness’ and violence. It
strikes at the root of prevailing psychiatric understandings of
madness and distress in our society. Yet I wonder if this point
will properly be picked up. I am referring to the publication of
the findings of an Inquiry by the North Central London Health
Authority ‘into the care and treatment of Mr. Anthony
Hardy’.

I’ve met many disabled people who have said ‘people
don’t see me, they only see my impairment’. I’ve
met many mental health service users who feel that other people
only see them as diagnostic categories like
‘schizophrenia’, ‘bi-polar disorder’ or
‘OCD’ (‘obsessive compulsive disorder’). I
know people who inhabit waking worlds of voices, spirits and
strange phenomena. But I have never met anyone who sees their
madness or distress (or indeed impairment) as something separate
from them, with a life of its own.

Yet this seems to be a conclusion of the ‘independent
inquiry’ examining the ‘treatment’ of the
murderer, Anthony Hardy,  (also known as the ‘Camden
Ripper’). Hardy was convicted of murdering two women in 2002
and the inquiry has cleared social care agencies of any blame in
the case. The chief executive of the mental health and social care
trust involved has said that the report of the inquiry is
‘important…because it finds that the man committed the
murders, not the mental illness’. 

You’ll forgive me if I do a triple take on this. What
exactly does this mean? These seem to be conclusions of Alice In
Wonderland proportions. A man has been diagnosed as ‘mentally
ill’. Because of this, he has over the years been processed
as ‘mentally ill’, despite a track record of criminal
violence. Then, despite the best efforts of a consultant to warn
that he was dangerous to women, responsibility for him has been
abnegated on the basis that he is not currently ‘mentally
ill’ and then almost immediately he murders more women.

Why exactly does ‘mental illness’ come into this
anyway and why was this man processed through the mental health
system? This was a man with a history of violence and assault,
particularly against women. Why wasn’t he dealt with
effectively by the criminal justice and prison system, which would
have meant that he could pose no outside threat?

This has to be because psychiatry in extending its domain over
the years has muddied the water, attaching diagnostic categories to
people who are physically and sexually violent, without clear and
independent evidence of relevant distress. Then the psychiatric
system has either failed to take responsibility for the people it
has brought into its orbit, or as is notoriously true in the case
of people it labels as having ‘dangerous and severe
personality disorder’, stating that they are
‘untreatable’, washed its hands of them.

Robert Robinson, the solicitor chairing the inquiry, said,
‘It remains true that the vast majority of murders are not
associated with mental illness…In this case, having carefully
reviewed the evidence, we have concluded that Mr Hardy’s illness
was purely coincidental to the three murders’.  So why then
has psychiatry for so long, seemed so determined to psychiatrise
violence and create an increasing number of diagnostic categories
associated with violence.

Since the psychiatric system is so wedded to a medical metaphor,
let’s think it through. Does having a broken leg, spinal
injury or lung cancer make people vicious and violent. If people
are experiencing distress, does that ever truly explain or justify
violence on their part? I’ve known women mental health
service users, in abusive relationships with men service users who
tell of them using their distress as an excuse for their behaviour.
Some of those women have challenged this. ‘Just because he
feels bad, he doesn’t have to behave badly to me…The
voices may say do this or that. It doesn’t mean he has to do
what they say’. They reject determinist model’ of
madness and distress which so often lie at the heart of the crude
thinking which couples bad with mad.

Women Against Rape put the matter simply and sensibly in their
more general plea for women’s rights to be safeguarded and
respected:

‘Anthony Hardy is believed to have killed many others
– he had attempted to murder his wife; a dead woman with a
head injury was found by police in his flat; other women have
reported attacks by him which were never prosecuted; and he was
known to hate women, especially sex workers.’ 

Doubtless this terrible case will end up being used to justify
more oppressive mental health legislation. What it should signal is
the need to step back from psychiatric explanations of physical and
sexual violence, particularly against women and children and the
need instead to begin valuing their rights and lives and deal
effectively through criminal law and custody system with people who
are prepared to use violence to curtail the rights of others.

Peter

19 September 2005

Roy Taylor, Director of Community Services at Kingston and
formerly President of the Association of Directors of Social
Services, regularly reminds people that 2005 is the last year of
social services departments.

Introduced in 1971, they have dominated the face of social work
ever since. Now, new roles, relationships and restructurings with
health, plus the splitting off of social work with children to the
Department for Education and Skills, are putting an end to all
this.

I have just spent my weekend at a 30 year reunion bringing
together people whose careers began about the same time as the new
‘SSDs’ This was the first group of social work students to train at
Lancaster University – the alumni of 1975 –1977.
Someone had brought the group photograph from the time. Lots of
long hair, beards and sideburns and seventies styles and colours,
that made the youthful figures in the picture now seem as far
removed as sepia portraits. We went back to the steps where the
photo had been taken for an updated version, which a kindly college
porter took with our selection of digital cameras, amid much
laughter. We revisited a terraced house which some on the course
had rented and which still looked like student accommodation. A cat
watched us from the porch.

I guess everyone looked older, but as you get older yourself the
effects of the years on others seem to get hazier. It was a moving
weekend, catching up on people’s lives, their relationships
– new ones and old ones – hearing about some deaths and
other sadnesses and finding out about friendships that had endured.
We heard about people’s hobbies, from gardening and salsa
dancing, to competitive tennis and fell walking.

The organisers in the group had done a good job of tracking
people down – stretching across Scotland, Wales and England,
including a few who hadn’t been able to make it. We had a
quiz, with multiple choice questions. Who won Wimbledon and the FA
cup in 1975 and 2005?  ‘What was the rent of a student room
with hot water andcentral heating on campus’ then and
now?’ The price had doubled in real terms over the years.
Some contemporary material had been brought, including a probation
leaflet (those were the days when probation  and social work
students were trained together), describing the difficulties you
might encounter in the job, but also talking about the ‘quiet
satisfactions’ that people could expect from a career
‘advising, assisting and befriending’ clients.

But there was little wallowing in nostalgia as we cooked our
breakfast in the student kitchen and sat round the communal table.
For me it felt a remarkably upbeat and unsentimental occasion. I
was most impressed by how many people were still working away at
social work and social care, locally, regionally and nationally,
with real dedication and enthusiasm (although the stress and long
hours were evident as an undercurrent). There were people still
working in face to face practice with service users, as well as
others who were proud to have become senior managers. One person
who had left social work still said that the lessons he’d
learnt from it were valuable in his changed career. There was a
sense of genuine creativity and development. People showed a real
concern to listen to service users, to advance user involvement and
learn from what service users said; to take forward and extend
access to developing initiatives like direct payments and telecare,
while still grappling with the never ending challenges of budgets
and restructuring.

I should be honest and admit that this course was also
particularly important to me because it’s where I met my
partner, Suzy.  And a tear did come to my eye after we all said our
goodbyes and took the last photos. It was not from sadness though,
but rather a real sense of pleasure to have seen people again and
to have gained a sense of their personal and professional
commitment. With people like them involved, I’d say social
care was in pretty safe hands. I’d have thought they’d
make a rather good advertisement to encourage today’s
potential recruits to feel that social work had something
worthwhile to offer – both for their lives and for other
people’s.

Peter 19/9/05

12 September 2005

If I am honest, it is a long time since I’ve enjoyed
watching cricket. It seemed to have become so macho, so commercial
and to have so much difficulty at international level in
acknowledging and respecting human rights issues. However, like
many others, I have been caught up in recent enthusiasm for the
latest test series between England and Australia. It’s
difficult not to enjoy the skill and excitement that we have seen
in London, Manchester, Birmingham and Nottingham.

So last Friday, I was watching Channel Four News prior to
catching up with the cricket summary, when I was caught up in
something a lot more important and more closely connected with my
work and personal life. It was an in-depth item about a new Mind
report on withdrawal from psychiatric drugs. Mind’s study was
based on interviews with more than 200 recent psychiatric drug
users. Seventy percent had felt pressured to take medication and 60
percent experienced difficulties coming off it. This rose to over
two thirds among users of the SSRI group of anti-depressants
including Seroxat and  Prozac. Service users felt that GPs
generally offered them little support coming off these drugs
although the ‘side’ effects were a key reason why they
wanted to.

This was a decent news item, with an interview with Richard
Brook, Mind’s Director and a service user with direct
experience. This kind of coverage highlights how far we have come
in recent years and how much progress the mental health service
user/survivor movement has made in ensuring that the experience of
service users now has to be placed centre stage in discussions
about mental health policy and provision.

But the media seek ‘balance’ and it was the other
contributor to this discussion who left a chill in my heart and
made this a news item which I for one won’t forget for some
time. I speak as someone who spent years on prescribed psychiatric
drugs and for whom getting off them was a major issue which took
massive support and yet more time.

The interviewer spoke to Dr Sarah Jarvis, spokesperson of the
Royal College of General Practitioners.  She said that
‘mental illness’ was ‘the same as any other
illness’. If someone was prescribed medication, for example,
for diabetes then ‘they will continue to have to take
it’. There’s no difference. Really? Is that so? 

No wonder she seemed surprised that service users could hold a
view that at some point they might stop medication. No wonder she
seemed oblivious to the damaging effects that service users have
long highlighted professional over-reliance on drug therapy has
created for them and particularly for black and minority ethnic
communities. Her assumption was that ‘mental illness  – and
she didn’t seem to differentiate between different diagnostic
categories – was akin to any other chronic currently
incurable physical condition. Just keep on taking the tablets.

What about the government’s new emphasis on
‘recovery’ in mental health? What about the social
barriers and discrimination perpetuating distress highlighted by
the recent Social Exclusion Unit report on mental health and social
exclusion? What century exactly is D Jarvis living in? How long
will such simplistic medicalised interpretations of madness and
distress continue to be trotted out on mainstream news? Will we
ever get a serious, inclusive and informed public debate on these
issues so long as the dominance of medical professions and big
pharmas continues? I fear there will be many sleepness nights
before this question is satisfactorily answered.

Peter

5 September 2005

Over the last week, contributors to an e-list of mental health
service users (UKSurvivors) have been remembering the life and
mourning the premature death of Celia Hughes. She died earlier this
year after a long involvement in Survivors Speak Out, the
pioneering mental health service users’ organisation, with
which I was also proud once to be involved.

One of the things you get used to when you are involved in the
service users’ movement is that people often seem to die
relatively young. The other day, putting together the
acknowledgements for a new report by Shaping Our Lives, the service
user organisation I am involved in, I added the name of Phil Miller
of the Essex Coalition of Disabled People. He was working with us,
had been really helpful and was respected locally and nationally.
He too died unexpectedly and far too young not long ago.

All this is one reason why I think it is important for us to
celebrate service users’ lives and achievements while they
are still with us. One person I’d like to single out in this
way is Louise Pembroke, who I would call one of the heroines of the
psychiatric system survivor movement. I have never seen Louise
identified as a ‘champion’, ‘expert’ or
‘leader’. But then many of the service users identified
as such have been so described by service providers who may have a
very different view of the subject to most service users!

I can think of few people who have made a greater contribution
than Louise. She was herself once Chair of Survivors Speak Out, but
is probably best known for her pioneering work on eating distress
and self-harm. Alongside others, she has played a key role in
reshaping understanding of both, challenging traditional ways in
which such experiences have been pathologised and highlighting the
way in which service users have often turned to them because of the
oppression, abuse and difficulties which they have experienced,
identifying different more effective ways of helping people to deal
with them.

More recently Louise had developed dance as a means of
expression for madness and distress. A new DVD, ‘Dedication
To The Seven’, will shortly be available from Mind*. As
Louise says: ‘My dance is about my experience of living with
what is labelled as ‘psychosis’, specifically hearing
voices and seeing visions’….I have had to accept them,
make a relationship with them, understand what they meant to me and
develop strategies for coping.

Mind you some people might think Louise is a bit of an oddball
weirdo. She is a committed Treckie (if that’s how you spell
it) and loves Dr Who, not least in his latest manifestation. She is
proud to tell of times when she has spoken at conferences in full
Star Trek costume. I have known Louise for a long time now and
she’s one of the people whose commitment and achievements, as
well as sense of fun, help me to keep going. It’s no small
sign of the times and the potential for change, she has been booked
to present her dance at the forthcoming AGM of the Royal College of
Psychiatrists and hopefully will be performing to an international
audience next year at the ISPS Conference in Singapore. Keep on
Trecking Louise!

* Mind Publications, Granta House, 15-19 Broadway, London E15
4BQ

Peter 6/9/05

30 August 2005

One of the reasons that I like the sort of cafes and teashops
that I frequent, is that I can usually be sure not to bump into any
of the kind of people I know from the service world of health,
welfare and public policy. No offence intended and there are many
good people among them – but it is so nice when you are ‘off
duty’ to be able to sit down and be yourself in the safe and
happy knowledge that here your paths are not going to cross. Ah,
tranquility, with no chance of the worlds of work and personal
peace colliding!

Charles Clarke

So I had a bit of a shock the other day, as I was sitting with
the remnants of my lemon meringue pie in front of me and another
cup of tea waiting to be drunk, to hear my partner say of the
person about to sit down at the table next to me: ‘That man
looks just like Charles Clarke’. No, she was wrong. As I
tried automatically to check unobtrusively, I realized, he
didn’t look just like Charles Clarke. He was Charles Clarke,
the Home Secretary, out with family and about to tuck in to cream
tea, lemon cake, sandwiches or whatever it was he decided to order.
(This was something I did not witness).

There was no sign among the tea cakes, Victoria sponge and
clotted cream, of any armed guards, sniffer dogs, security men
talking into mikes or other apparatus of national state politics to
which we have increasingly become accustomed. Nobody else seemed to
have recognized Mr. Clarke and the waitress when prompted said she
thought she knew his face but wasn’t sure quite who he
was.

Suddenly I felt a great relief at the enormous diversity that is
still reflected in England and the UK. Here I was in the cosy,
benevolent world of afternoon tea which somehow still manages to
coexist with the increasingly frightening streets of big cities
like my home town London, where growing numbers of armed police are
routinely on patrol and there are no longer any clear agreed rules
protecting citizens going about their peaceful business.

There bridging the two, the embodiment of many current concerns
about where our world is now heading, sat the substantial figure of
the Home Secretary – unnoticed and object of no interest, as
far as I could see, except my own.

In a Make Poverty History pamphlet, there are suggestions about
what to say if you ever get stuck in a lift with Tony Blair. While
this has always seemed to me a rather unlikely occurrence which I
probably didn’t need to prepare for, this teashop moment did
feel somewhat similar.  But I decided not to regale the Minister
with my views about immigration policy, the treatment of refugees,
‘the war on terror’ and ‘anti-terror’
legislation. It wasn’t just that it didn’t feel like
quite the time or the place – I just couldn’t see what
good it would do.

Maybe that is a reflection of the wider worries that are now
being expressed about the difficulties there are for people to
disagree or dissent effectively in politics. Then the fact that
people can sit peaceably at adjoining tables to a cabinet minister
in a public place with no sign of bodyguards and the rest, would
seem less a testament to the vitality of democracy, as of its
weakening.

Peter 30/8/05

22 August 2005

One of the things I most like about summer are the chances there
are for reflection. Fewer emails, fewer letters, fewer meetings,
less phone calls and faxes, mean there is more time to think.
Sadly, our western society seems to value two things above all and
neither is reflection. First, is action – we must be seen to
be busy – doing something. Like Agatha Christie’s detective,
Hercule Poirot, I believe in the merits of the ‘little grey
cells’ rather than rushing about like a headless chicken
– but this is out of kilter with our whirring world.

So we are discouraged from quiet contemplation of the past or
trying make sense of our lives in the present. Instead we must
focus on the future and rush about in pursuit of it. It’s
always going to be the next TV programme, the next football match,
the next concert, the next holiday that’s going to make our
lives worthwhile.

Second, is the overarching political commitment made to paid
work. Having a job, being employed is sovereign. I can’t
think of a time in living history where there has there been such
an emphasis on having a J. O. B., where it has been made such a
virtue. A whole new vocabulary of ‘social exclusion’,
‘job seekers allowance’, ‘social
responsibility’, ‘benefits scrounger’, has been
developed to stereotype and condemn those who don’t fit the
bill.

Sadly, instead of this shift in thinking offering a great
opportunity for mental health service users, people with learning
difficulties and other disabled people at last to secure their
right to decent employment from a traditionally hostile and
excluding labour market, too often the issue is still framed in
terms of obligations, with them pushed into low grade undesirable
jobs. So strong is this new religion of employment, whose credo
seems to be ‘I work, therefore I am; I don’t work
therefore I am nothing’ that it is difficult to question it
– and for many, any attempt to, might only lead to loss of
benefits.

The truth is that reflection is a bit of a luxury and it is one
that may be denied many people. If you have to do some of the crap
work and mickey mouse jobs that many people are increasingly being
shunted into, all you may want or be able to do when you stop is
sit down and rest. That’s not the same as reflection or
contemplation and while it may ease the body, it is unlikely to
offer the same gains to the mind and spirit.

So I feel really lucky to have my summer times to reflect. It
helps me manage my life. It offers more opportunities to think
things through with others in restful situations. I feel I do some
of my best thinking in these circumstances. I was interested to
read this week of the NHS chief executive on £115k a year, who
at a routine pay review was found not to have the qualifications he
claimed to have for this or previous senior jobs and had to quit. I
don’t personally believe in the special merits of academic
qualifications. But this did rather fit my picture of much senior
management as a system demanding limited skills, but which results
in a major task for the rest of us, having to get round and sort
out the problems that it creates. Which may help to explain why our
opportunities for contemplation often get restricted to holiday
time!

Peter 22/8/05

August 15th 2005

I’ve just been spending some time at the seaside –
the less fashionable end of the Norfolk coast – close to
Great Yarmouth. This has been an annual pilgrimage for us since 22
years ago when my father-in-law, knowing we didn’t have any
money for a holiday, first paid for us to have a week in a holiday
chalet. It was an unexpected and wonderful break, where each day
felt like a special treat.

Much has changed since then, but we still love it here. One
thing I’ve noticed is how many more disabled adults and
children now seem to come on holiday than used to. Partly it may be
about improved accessibility (although where I am, people still
have to manhandle wheelchairs onto the beach – nothing has
been done there to reduce barriers). But I think it is more to do
with big and growing changes in attitude. In my opinion, credit for
this must go to the disabled people’s movement and it is
another reason to celebrate its pioneers.

Not only are non-disabled people now likely to expect to be
among disabled people more routinely – and Disability
Discrimination legislation has played some part here in helping
with attitudes and access. But perhaps more importantly, disabled
people and parents with disabled children are no longer as likely
to tolerate being hidden away at home or in segregated
institutions. Expectations have changed. Now it is not just a
matter of seeing parties and minibuses of segregated wheelchair
users and people with learning difficulties, but rather disabled
people making their own way, organizing their own arrangements and
having their own independent holidays.

When we first came, lots of people who were here on holiday
either didn’t have cars and relied on buses, or had old
bangers. The bus service has been reduced over the years and now
when you look at the cars in the caravan parks, they are generally
a lot more modern than our J reg Lada (soon to become a
‘classic’ car I am sure!) and include smatterings of
4x4s, BMWs and the like. But that raises another question, with
holiday making in Britain relatively so expensive. Are the poor
people now the ones who can’t afford to come on holiday,
rather than the ones we used to see carving out their modest break?
That would fit with all we now know about widening gaps between
rich and poor in our society, as well as the growing gulf between
average and low income.

Peter 15/8/05

9 August 2005

First, regular readers may be interested in the result of  the
Rent Assessment Panel Hearing which I mentioned having to give
evidence to after our landlord tried to increase our rent beyond
the fair rent set by the local rent officer – without any
evidence to support his case.

A sheaf of papers through the post has now advised us the result
of the Hearing. Using the required mathematic calculation employed
for finalising the rent, the Panel fixed it at 94p more per week
than the original fair rent that had been set. This figure then has
to be rounded up to the ‘nearest 50 pence’ leaving us
with an additional rent payment to make of £1.00 per week. We
have to hope that this rent increase will help our landlord to live
in the style to which he clearly hopes to become accustomed and
leaves the Panel Chair with a suitable sense of a demanding public
duty well done.

Now something a lot more important. A small item on an inside
page in the national press last Friday left a lasting impression on
me. Headed ‘Care Inquiry’, it tells us a lot about the