Makaton Friendly DJ Jay Entertainer

My name is Jake Glennon. Since the age of 12 I have been running events as DJ Jay Entertainer. I am the youngest DJ in the UK, and I recently became the first Makaton Friendly DJ.

What inspired me to learn Makaton?

My cousin Alice is 12, she has Down’s syndrome and is a Makaton user. Last year we were on a family holiday and at the evening entertainment I could see that Alice didn’t understand what the entertainers were saying. She didn’t understand why she wasn’t being given the chance to go up on stage, or win a prize. As the evening went on she got more and more upset.

I don’t want children to feel like this at my parties and events. I want everyone to feel included, so I decided to attend a Makaton workshop so I could learn Makaton properly.

I attended a Foundation Workshop and a special overview Workshop for Party Entertainers, which I helped select the vocabulary for. I enjoyed meeting the other participants and discussing how both signs and symbols can be used.

I was very proud to receive my Makaton Friendly status and I recently attended a Positive Choices conference at Trinity College Dublin, for student nurses supporting people with learning disabilities.

I attended with my cousin Alice and her mum Amanda (a Regional Tutor from IT Matters CIC ).

I ran workshops demonstrating how I use Makaton at my events, the message being if I can learn Makaton to support my events surely they too can learn Makaton to support people like Alice when in their care, when patients are at their most anxious and vulnerable. I hope I inspired them!



I have put together this footage of the trip  - please watch and share the message. This is me! - thank you.


Jake Glennon
DJ Jay Entertainer


Reproduced with the kind permission of Jake Glennon and Amanda Glennon.
Many thanks for pointing this talented young man out to us Helen Laverty.
Original blog can be found here.

Keeping Well Event!

I assisted Richard and Donna to attend a keeping well event for people a learning disabilities. My self and the service users who attended thoroughly enjoyed the day and learned a great deal throughout the day.

The event consisted of different workshops in relation to mental health and well-being. One of the workshops we attended was the tree of life with a student psychologist. The tree of life is a positive way of discovering important people in your life, past experiences and future goals.

Other workshops available were relationships and dating, exercising and eating well and overcoming hate crime. We enjoyed learning about different ways of keeping well and engaged with service users and health professionals. Richard and Donna said they would definitely attend the workshop again and thought that it would benefit others, who may want to attend in the future.


Holly Wilson

Richard's story

Hello, my name is Richard and this is my story.


I was born with DiGeorge syndrome, also known as deletion 22q syndrome. I was also born with autism. Autism affects me in different ways, but mainly I don't understand body language or facial expressions. Also I have difficulty in recognising emotions in other people and my own emotions like happy or sad. I have dyspraxia and dyscalculia. Also I have autoimmune disease and I am a carrier of sickle cell.


I have been a member of ResearchNet in Greenwich for the last four years. I really enjoy going to ResearchNet. As well as doing exciting projects that help people with learning disabilities, it really get me out of the house. As I rarely leave the house unless I have a purpose. At the moment we are working on a project which help vulnerable people to stay safe in their communities.  We are designing a card for people to put in their wallets or purses. On the card it tells them some important phone numbers  and what they should say when they call the numbers.


Once a month I go River Wood which is run by Greenwich Mencap. This is where we turn wood into furniture. Every Friday I go to Tramshed in Woolwich. This is a group for people with learning disabilities. I'm a volunteer worker at Tramshed, where I support and get people involved in the activities.  I also go the community meeting once a month for Mencap.

I met with Kaye Jones last week, who is the manager of TOPS day service. Hopefully she will be finding me some work at Goldie Leigh Hospital and I will be teaching the TOPS staff about autism. 

I'm trying to go out more. But because of my autism I can't go out for more than three hours. I find being around people for more than that time really stressful. I use my freedom pass quite a lot and I walk from my home in Thamesmead to Woolwich. I also go to see my friends in Croydon once a month. I get the 54 bus from Woolwich and then get a tram in Croydon.


I am really interested in prohibition which started in the USA in 1920 and finished in 1933. This was when drinking alcohol was illegal in the USA. There was a non dry movement and a dry movement. Lots of the mob were involved with prohibition, like Al Capone, Benny Seagull and Joe Kennedy Senior. They held an open vote in 1933, much like Brexit vote here two years ago. The non dry movement won the vote and drinking alcohol is not illegal anymore. 

I really like playing Football Manager. I've been playing since 1992. My team is Paris St Germain and we are 8th in the league. We have only lost three matches all season. I also like watching wrestling on the WWE network. 


I'm about to start seeing Carol from Greenwich Community Learning Disability Team. She is an occupational therapist and she will be teaching me how to cook. I'm starting off with scrambled eggs and then pancakes the following week.

 Thank for reading my story.

3 reasons why I became an intellectual disability psychiatrist

I am a neurodevelopmental psychiatrist trained in Intellectual Disability (ID) in South London, UK. I was attracted to the profession for three main reasons. First, I love the patient group. People with intellectual disability are the kindest, funniest and most engaging patients I have ever met. Even on difficult days, they generate in me a big smile. Unfortunately, they are also the least heard group in society. The second reason comes naturally then: I want to do my bit. The needs of people with intellectual disability are not adequately met, and health and social care professionals outside intellectual disability circles do not understand them. I look at the powerful voice of the LGBT population and the changes they have effected in so short a time, within government, within the Law, within society, and I wonder how we can achieve something similar for people with intellectual disability, or whether it is possible. There are so many initiatives, but still so much to do. The NHS is under strain. I am under strain. There is not enough money made available to bridge the gap. However, going back to reason no.1, I still smile.

 

My third reason for choosing a career in intellectual disability psychiatry is academic. The complex interaction of neurological and developmental disorders, genetics, general health and the environment makes medical assessments intellectually rewarding. It is a time consuming detective work, going right back to the person's conception, to try and understand the presentation, and treat it to the best of my ability. Within the Bromley intellectual disability medical team, epilepsy receives a close attention. Optimising epilepsy control has led to improvements in functioning, alertness, mood and behaviour. There is a dementia pathway, especially aimed at people with Down syndrome, so medical treatment can be initiated early to benefit quality of life. Of course, some people present with functional psychiatric disorders also, such as depression, anxiety and psychotic disorders. Many people with intellectual disability are on the autism spectrum, and I try and raise awareness about environmental adjustments that can be made to meet the patient's needs, and reduce his/her distress. Often, treatment is not medical but environmental. I then refer on to my precious multidisciplinary team (MDT). It has been humbling to learn from them about the changes that I can make to my communication to provide better consultations for people with intellectual disability.

 

I strongly believe that there should be a new medical speciality, a sort of paediatrician for adults with intellectual disability. It is my opinion, and my opinion only, that the current adult model is widening the health gap for people with intellectual disability, who need a specialised service with a specialised MDT. Interestingly, the only medical speciality represented within intellectual disability services in the UK is psychiatry. Does this make us specialists or generalists? The topic is widely debated.


Dr Lilly Lines

From student nurse to clinical director - my career pathway

In writing this blog I was asked to think about three things, how I came into nursing , my career journey to date and what was better/worse then and now.

Sounds easy…. ?

My nursing journey started almost thirty years ago and shockingly looking back was an accident rather than a well thought out plan.

As a child I had a friend Rachel who lived a few doors down, she had cerebral Palsy and what I now think was a very mild learning disability, although that was not necessarily how she was treated. I can remember from about the age of 11 recognising the struggles she would face to be accepted. I wanted her to join Girl Guides with me and she was not allowed, I think people thought it would be too rough, we were the girl guides not the karate club and anyway I used to tip her out of her wheelchair onto the grass so we could play and she never came to any harm!

My decision was made I was going to be a “special school teacher”, however after submitting my application to university I was informed that from my year of entry there would no longer be courses specifically for “special education” so there were two options standard teacher training or, they helpfully sent me some other disability related options. On the list was “ Mental Handicap Nursing” a new programme where the teaching was mostly university based to see if that added value to nurses (the programme only ran for two cohorts until they decided there was no added value in nurses having a university education!).

So started my nursing journey, I trained at Monyhull Hospital an old expansive institution in South Birmingham. It was a tough three years. There were some great people and I learned so much  but it is impossible to pretend that things were not difficult. As students we were learning that community care was definitely on the horizon and yet the thinking on most of the wards was anything but progressive.

I have prided myself on a career full of positive experiences and opportunities but it could have never really started, I found myself in trouble on more than one occasion for breaking the rules, the time that most easily springs to mind was when I refused to blend the main course with the dessert for speed of feeding.

The staff, with a few very noteable exceptions were as institutionalised as the service users and my training became an endurance test to the finish line.

On qualifying I breathed a sigh of relief and took a very short term job with the children’s team I had been on placement with to complete a resettlement project and from there took my first “proper” job in Maidstone. Working in a residential service for men with challenging behaviour.

It was here that I had the opportunity to put into practice the best bits of my nurse training, to begin to develop a sense of what a good service looks like and to appreciate the benefits of life in the community.

Over the next three years I completed further academic study and moved to work in a number of different homes within what was then Maidstone Priority Care Trust. It was probably one of the most rewarding times of my career. The service users ensured that my training continued and reminded me why I had chosen this career.

In 1996 I was managing a residential service and although not looking for a new job personal circumstances, my dad had just died and I was about to get married made me look for jobs in the community where regular office hours would give me weekends to focus on my family.

I have Steve (Hardy) to thank for pointing out an opportunity in Oxleas and joined the Trust in 1996 as a community learning disability nurse in the Bexley team.

Community Nursing bought a new and different set of challenges but also a new enjoyment, my clinical skills developed more rapidly than before and the close MDT working was a real privilege. When I look back and answer the question about what was better then it is impossible to think that anything from my training was “better” it is the days as a community nurse in Bexley that will always be my reference point for the “good old days”.

In 2004 I became Oxleas first nurse of the year and later the RCN learning disability nurse of the year. This was for my work with parents with a learning disability. At the time I was mildly embarrassed by the fuss but with hindsight recognise the springboard that I was then given to develop my work across a wider platform than Oxleas and begin to be part of networks beyond the trust.

This certainly made me less worried about change and gave me an appetite for further extending my career, the timing was good in the previous years I had had three children all of whom were now at school and so I decided to give my career a renewed focus.

Since then I feel change has been the norm. I have had roles in Greenwich and Bromley as Nurse Manager, led on establishing Atlas as a new inpatient service, became a consultant nurse and then Clinical Director before taking on a reactively unusual role as both Clinical Director and Associate Service Director.

I believe that change is good with every new role I have had I have learned something new about me, about people with learning disabilities and about how we can develop services.

Improving the health and lives of people with a learning disability has been at the heart of all of the decisions I have made and I know the same is true of all of my colleagues.

The NHS has changed so much in that time and I remain in awe of the fantastic work that our teams do to improve the lives of people with a learning disability even when times are tough. 

I know that all of my colleagues will do a great job in ensuring that there is a bright future for learning disability nursing, this will be challenging and we will need to be creative in embracing new roles and opportunities such as exploring apprenticeships, working in new environments and developing roles in diverse settings.

Society also needs to play catch up in acknowledging the contribution of people with learning disabilities to their communities and I hope that over the next decade we will see greater inclusion and equity.

Current initiatives such as Transforming Care and LeDeR need to provide a legacy of improvements that are realistic and sustainable and there needs to be parity when looking at the resources required to provide safe and effective services.

Am I glad I became an accidental learning disability nurse – absolutely I can't imagine any other career path that would have been more rewarding or bought me in contact with so many amazing people (service users and colleagues).

Lorraine Regan, RNLD

“It helps my brain. Sometimes it’s a bit hard on my brain”: My experience of co-production with Research Net

Greenwich Learning Disability Research Net is a group of Oxleas staff and Oxleas service user volunteers who work collaboratively to help improve and deliver services. The group is based on the principles of co-production and describe themselves as:

“A group of people who volunteer once a week. We come together to talk about Oxleas services to make them better and more accessible. We want to help people with learning disabilities and their carers to feel less isolated. We want to be more involved in our community. We think people underestimate people with learning disabilities”

We currently have seven volunteer members (and are in the process of recruiting two more) and staff from Greenwich CLDT including Psychology, Speech and Language Therapy, Occupational Therapy and Social Care. The group promotes self-advocacy; people speaking up for themselves and being in control of their own lives.

When our Research Net group first came into being, we recruited volunteers from CLDT team meetings, community groups and Oxleas Learning Disability service user events. We held a welcome day to present information about other Research Net groups and research projects and people discussed their ideas and hopes for the group. These included: being safe, no bullying, not getting shh-ed at, being successful and other people being polite and understanding us.

Research Net focus on one project at a time which is based on an issue that is important to the members. Our previous projects have included:

- A sexual health clinic consultation: We talked to CASH staff about how to speak to people with a Learning Disability about sexual health.

- First impressions: What service users want from the first time they go to CLDT.

- Top Tips: Tips for how doctors should treat people with Learning Disabilities.

- Have Your Say Day: Helping to organise and run a Have Your Say Day run by RBG social services.

- Promoting Research Net: Getting the word out about our group and what we do.

Our current project is called Keeping Safe and we are in the process of creating a leaflet about what to do in an emergency and which numbers to call as we noticed that this is really hard and there is very little easy read information out there.

Other “side projects” the group have completed are training GPs, interviewing CLDT staff for recruitment, doing LDSQ training and some conferences and presentations to share our work.

When asked what they like about the group, the members said:

• “Absolutely brilliant and fantastic”
• “I think it helps my brain. Sometimes it’s a bit hard on my brain”
• “Those who are not good on computers get more training”
• “Wide ranging, cover everything”
• “Presentations and flyers we produce reach out to much more people”

As we think that things can always be improved, we also asked them what could be better about the group. They said:

• “continuing to be friendly and supportive”
• “cup of tea before the group starts”
• “offer other drinks like juice”
• “extra biscuits”
• “a bit more oomph”

As staff members, we have noticed the volunteers developing their skills, increasing in confidence, supporting each other, advocating for themselves and each other and their work is greatly in demand!

We have also faced some challenges as a group though. The HR process of becoming a volunteer is a long and difficult one with the legalities making it hard to make reasonable adjustments. Also, as most of our members have a mild Learning Disability, ensuring our group is representative of all people with Learning Disabilities and making sure that the voices of people with moderate or severe learning disabilities are heard has also been a challenge.

In case anyone is thinking of starting their own Research Net group, the volunteer members have some tips for what makes a good Research Net group:

- “Get ideas from people with Learning Disabilities”

- “Balance of people”

- “Make it fun”

- “Find a room which is big and spacious”

- “No changes to staff”

-“Parties are good- celebrating”

- “Camaraderie”

I will soon be leaving the Trust which also means that I will no longer be a part of Research Net. I am very sad to be leaving the group and will miss it greatly but I also feel that I have learned so much both as a professional and as a person. Attending Research Net every week has been one of the favourite parts of my job and it has been wonderful to see the members grow in knowledge, experience and confidence. They have taught me about the difficulties and discrimination often faced by people with Learning Disabilities and about their resilience, compassion and problem solving. I have seen them comfort each other during personal difficulties and speak up for each other when someone has spoken over them. They have had passionate debates about politics and which picture to use on an easy read leaflet. They have confidently presented their work at conferences and grilled police officers about what training they receive on working with people with Learning Disabilities. I am very proud to have been a part of a group which is taking steps to tackle society’s underestimation of people with Learning Disabilities and I would like to thank the Research Net members for that.

Esther Coroneo-Seaman

Assistant Psychologist

Greenwich CLDT

From Postman to Professional: My Learning Disability Nursing Journey

On the 3^rd of March 2018, will mark 15 years of working in learning disability services…

Firstly, let me introduce myself…my name is Lee Walker and I am a proud RNLD. I just thought I would share my learning disability nursing journey with you.

Where did it all begin….

 

Strangely it all started in rugby club bar of all places back in 2001…I have a passion for playing rugby, it was after a hard training session on a wet and cold evening in November that a fellow team mate and little did I know at the time an RNLD got talking in the bar after the training session putting the world to rights over a cold beverage, the subject turned to work and the nurse began to tell me about his day and what he had been doing as part of his job, I thought that sounds very interesting and quite exciting. At the time, I was pounding the streets in the leafy suburbs as a postman.

Over the coming and intervening months, I talked more and more with the nurse asking more questions and getting more and more interested in his work and I thought to myself could I do this work?

Now in 2002 after changing jobs, this time working in a warehouse for a well-known supermarket on permanent nights and going through a relationship breakup, I began to question lots of things in my life especially my choice of job, I wanted to have a career not just a job that I was not satisfied with.  I was limited as I did not perform that well at school and did not have the opportunity to go to university and have a career.

I plucked up the courage to ask the RNLD “how can I work with people with learning disabilities?”, he suggested I try and work as a support worker. I trawled the local papers for job opportunities and eventually I spotted an advert in the local press asking for support workers for adults with learning disabilities and behaviours that can challenge services in a NHS community home. I took the plunge into the unknown; I applied, interviewed two weeks later and offered the job and I started on the 3^rd March 2003. Although it was a plunge into the unknown immediately when I started working with people with learning disabilities I knew this was the job for me and it felt so right.

The NHS supported me as a support worker to progress and gain qualifications including the Learning Disability Award Framework and my NVQ 3. I had a supportive manager who encouraged me to apply for a secondment to begin my nurse training which I started in 2005. I valued my time as a support worker, during this time I learned the core and essential values of supporting individuals with learning disabilities. I also had the bonus of meeting my soul mate who latterly became my wife, she is also a fellow RNLD.

During my nurse training, I had the privilege to meet some inspirational lecturers who stretched us academically, professionally and personally to strive and aim to achieve high standards, they also taught us the importance of being resilient and having the determination to never settle for second best and to never give up no matter how difficult or challenging a situation is. I will never forget that the other students in our cohort from the other branches of nursing would always tell us, there is no jobs in learning disabilities, there is no future in learning disability nursing, learning disability nurses are not real nurses. Our Learning disability cohort was small but all the challenges we faced brought us closer together and made us have a sense of determination to overcome challenges, a quality I still use to this day. I have never forgotten my university days and I had the opportunity to meet some lifelong friends, some inspirational mentors that latterly have become colleagues and friends.

Since qualifying as a RNLD in 2008 I have worked with both children and adults with a learning disability in a variety of settings including forensics, community learning disability teams, safeguarding and acute care services. I been fortunate to return to university to continue further studies in gaining a BSc in Mental health work and now studying for a Masters in advance nursing practice. I have had opportunity to lecture at university to student nurses and the honour to mentor some very talented students that I have enjoyed watching their own careers develop and progress in the profession and worked alongside them as colleagues.

I have had the pleasure to work with and support many people with a learning disability that have inspired me with their determination and resilience to face and overcome many challenges that a lot of us could never imagine facing in life.

Learning disability nursing has given me the opportunity to develop professionally and personally and the privilege to meet many great people and to develop lifelong friendships on my journey so far, I would recommend this rewarding career to anyone in a heartbeat and my advice to anyone looking to become an RNLD, is to just go for it, you will not regret it. Here is to many more years of inspirational learning disability nursing practice to come.

Lee Walker, RNLD



The achievements and tribulations of a nurse

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!

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

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

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 6^th 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.

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