The Early Years
When I was about 10 years old my father was the Chairman of
Trustees of a large home for children with mental handicap, as it was called then.
This was in East Dulwich, south London. Whilst he was at meetings I used to
play with children. I remember playing catch with a boy named Lawrence and
football with an energetic young man named Tony. I met him about 30 years later
when he lived in a supported living house, he didn’t remember me but it was great
to see him still enjoying life. This was what got me into the world of people
with learning disabilities.
Changing the world
I got my first job with the NHS at the age of 18 as a
support worker with Maidstone Mental Handicap Care Group. This was a great
forward thinking organisation. They had already closed Lenham Institution and
opened a number of communities home in neighbourhoods across Maidstone. I was
working in a home for 5 people with a range of learning disabilities, the year
was 1989. I became a keyworker to a gentleman named Barry. I said that Barry
should attend his own care reviews, they look baffled but couldn’t argue with
me. I took it a bit too far when I suggested that he should attend the house
meeting, as he lives here permanently. But I didn’t win this one!
In 1991 I was seconded to study learning disability nursing. I
loved my time as a student nurse, I honestly thought I was going to change the
world. But within three years I learnt that you change the world by taking
small steps and taking people with you. I had the great opportunity to work
with some high class Registered Nurse in Learning Disability (RNLD) who I learnt
so much from. I learnt the process of Assess, Plan, Implementation and Evaluation
(APIE), how to write care plans, analysing behaviour and completing a task
analysis and teaching skills. Ironically I have always been drawn to people
with whose behaviour is described as challenging but I got my best essay results
on a placement for people with profound learning disabilities – I got 99%!
Something I was proud of was my response to having to
implement a behavioural care plan (I use the term ‘care’ very loosely). A man living
in a residential home was described as having challenging behaviour, which took
the form of him banging walls and doing what I call ‘break dancing’. Every time this gentleman banged the wall you
had to go up to him and get him to sniff out of a bottle of ‘smelling
salts’. I tried to sniff once at the
home myself, it’s not something I’m planning to do ever again. I didn’t agree
with this at all, it was pure punishment, undignified and it was battle with him
as he was holding his breath. So I wrote to the Clinical Director with my concerns. I received
a swift response saying that they had closed that care plan as it achieved its
goals. They could say what they wanted but at least they ceased this barbaric
approach to care.
During this period I was a 'Link to Families' for five years. This is when I took a teenager with learning disabilities out about every two weeks to do something fun. But my father died in 1997 and I moved to London soon after. This wasn't my finest hour as I lost contact with the young man. However I've seen him out several times down the pub near my mum's. We had a chat and he now lives by himself and has a job!
During this period I was a 'Link to Families' for five years. This is when I took a teenager with learning disabilities out about every two weeks to do something fun. But my father died in 1997 and I moved to London soon after. This wasn't my finest hour as I lost contact with the young man. However I've seen him out several times down the pub near my mum's. We had a chat and he now lives by himself and has a job!
The real world
I then had my first stint at Oxleas NHS Foundation Trust in
1996, working as deputy manager of a day service for people with challenging
behaviour. My role here was to develop appropriate behaviour care plans with
the service users and staff and develop a range of activities. I couldn’t
really call it work because I enjoyed going swimming with the servicer users
and day trips to the coast.
My next post was Unit Manager of a brand new rehabilitation unit
for offenders with mild learning disabilities. I spent a year setting this unit
up and it was the most enjoyable year I have had in my career. I spent time
assessing patients all over the country (the furthest being Northumberland),
comprehensive risk management plans, selecting staff, choosing all the
furniture, writing policies and setting up a two week induction for staff
before the unit opened. I learnt so much that year, all about the criminal
sections of the Mental Health Act, tribunals, personality disorder, clozapine
and fire starters to name a few.
Then I had to manage the unit, which is a different kettle
of fish! I spent so much time and energy into setting the unit up that I think
then managing the place was a step backwards. Managing the service users was
quite easy but managing the staff team was quite difficult for me. Most of the
staff were lovely and did a great job. But I find some staff more challenging
that the service users and dealing with staff clashing.
The Golden Era
The Golden Era
Then I applied for a job as a Training Co-coordinator at the
Estia Centre, South London and Maudsley NHS Foundation Trust. When I applied
for the job I didn’t realise that most of the people I had referenced during my
training worked there. The Estia Centre was a brand new academic unit that
bought together clinical, research and training under one roof. It was a unique
centre at the time, now the Kings Health Partnership follows this approach.
As well as developing training for staff I also set up the
Mental Health in Learning Disabilities Network. This network offered help and
support for any staff working with people with learning disabilities who had
mental health problems, which ran for eight years. Also I had the opportunity
to become a published author including books, training materials, guidance and
articles. I also completed the Masters in Mental Health and Learning Disabilities at Kings College University.
I became involved in setting up a ‘Capacity to Consent’
training course with a colleague. This was 2001, four years before the Mental
Capacity Act was published. I find this a really interesting subject that in
2018 is still greatly misunderstood. We will get there one day soon!
But I really missed the direct contact with the service
users so I started The Tuesday Group in Lewisham. This was a mental health
promotion group, which started as a twelve week course. As part of the
evaluation some members noted that they need on-going support for their mental
health. So we started to meet every two weeks and it continued for another
twelve years. It was really a peer supported group who relied on each other.
They became well known on the conference circuit and also became published
authors in their own right!
Peter and Liam from The Tuesday Group
From 2003 to 2007 I was a citizen advocate for Greenwich. I supported a man with autism to speak up for himself. I attended all his person centred planning meetings and also while he was admitted to an adult mental health ward. Unfortunately he then moved out of borough.
Fall from grace
Anyway on 6th September 2014 I woke up and felt something was wrong. I tried to call a friend but she couldn’t understand a word I was saying. She immediately called my brother and he called an ambulance. It was a stroke and I was in hospital for two weeks and then had to be cared at my mother’s home for a further six weeks until an occupation therapist said I was able to look after myself. I was off sick for a period of eight months. I now see the world from a difference perspective, as one who has had his capacity assessed and other people making decisions in my best interest!
I’m nearly back to where I was before the stroke but without
the stress of managing anyone. I tried to return to the Nurse Consultant post
but after trying for six months and having residual symptoms I found the job
very difficult. So now I am in the post of Practice Development Nurse. As well
as supporting staff (not managing!) I am a member of the Can You Understand It?
team, getting feedback from patients and service users, keeping people up to
date with news, resources and guidance, and patient safety. Its early days and
new so I have an opportunity to shape this role. Hopefully I will still be able
to make a difference.
I have got back to publishing work; I published a book about
the health of people with learning disabilities and another one on mental
health. The Can You Understand It? team are meeting with publishers soon with a
view of publishing a book about accessible information.
But what I am most proud of is supporting people with
learning disabilities to speak up and be heard. I have given people whose voice
is often not heard a platform to share their experiences, achievements, how to support them
and what does a good service look like. This has been achieved by people with
learning disabilities producing chapters in published books, writing articles
in journals, speaking at national conferences and writing blogs.
I would like to finish this blog by saying a big thank you
to all the people with learning disabilities who have shared their lives with
me over the last 30 years. It has been a privilege and will continue to be
until the day I leave this earth.
Steve Hardy, RNLD
Steve Hardy, RNLD
