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. 

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Changing the world!

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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%!

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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!

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The Real World

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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.

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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 Years

 

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.

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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 soo

 

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 riFrom 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

 

In 2013 I returned to Oxleas NHS Foundation Trust as Nurse Consultant for People with Learning Disabilities. This was an important role that covered being responsible for over 50 registered nurses and support workers. This job included covering three community teams for people with learning disabilities, two day services and an inpatient service for people with a range of learning disabilities and severe mental health problems. I know its unfashionable but I quite enjoy working at the inpatient unit. You get to see people make astonishing progress when they face personal challenges and difficult circumstances. Its great to attend the patients 'leaving party' and I feel like a little bit of me left with them, onwards and upwards!

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! 

 

A new challenge 
 

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.

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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.

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More recently Peter, Matthew, Christine, Eddie and me are publishing a book that will be launching on the 29th October 2020 - virtually! It's a collection of stories about peoples experiences of covid-19. We have managed to receive submissions from 13 countries in 5 continents. We are very proud to have Sir Norman Lamb, Hayley Newman and Cardiff University Vox Choir. You will also see the acting abilities of Sunny and me - I feel another raspberry award coming!

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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

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