Co-producing a learning disability awareness conference

November 3, 2015


This is my first ever blog.  I wasn’t prepared for how intimate and exposing it would feel, but armed with advice from amazing Twitter-bloggers @DownSideUp, @Lollardfish and @HerMelness (thank you) to find my voice, remember the original motivation and remain authentic – here goes.


I hate injustice and unfairness and I can’t get my head around why anyone wouldn’t want to live in an inclusive community.  I am blessed in that I am able to make my needs known, defend myself when necessary and to access the services I need, when I need them.  Learning disability nurses are usually aware of the barriers people with a learning disability face when accessing mainstream healthcare services; lack of accessible information, poor communication skills of staff, or a lack of knowledge about reasonable adjustments, for example.  Although it is frustrating that these things happen, we also need to remember the different priorities held by each branch.  With this in mind it could be argued that it is our responsibility, as the professionals and future professionals working alongside people with a learning disability, to bridge these gaps by promoting awareness and educating about communication.  We can do this by working alongside other branches to demonstrate how each of our skills can support and improve each other’s practice.


Key to equity of access to quality healthcare is the impact that insufficient understanding around mental capacity and consent has upon individual care.  Where there is also no knowledge of why and how to make reasonable adjustments for people with learning disabilities there is a real danger that some of the most vulnerable people in society may actually come to harm at the hands of those whose vocation is to heal and make people better.  Awareness of issues concerning people with learning disabilities, particularly with communication, is relevant to all healthcare professionals.  A learning disability is a life-long condition and a person with a learning disability will therefore experience all stages of the life-cycle, and may suffer any type of mental and/or physical illness that anyone else might.


In May 2014 a group of nursing students at Bradford University decided to take action.  These weren’t learning disability nurses; they were adult nurses with a passion for equity of care for everyone.    Their vision was a student-led conference, with delegates invited from all branches of nursing at Bradford University.  The conference was an overwhelming success, with students leaving at the end of the day full of enthusiasm, and a commitment to ensure that the care they offer people with learning disabilities is of the same high standard they offer others in their care.  This was supported by the new skills they had learned to improve communication with people with a learning disability and the confidence to make necessary reasonable adjustments.


Being a part of this conference and experiencing the energy first hand made me realise that I was in an ideal situation to help carry the model forward.  At the time I was a third year learning disability nursing student at the University of Hertfordshire which teaches nurses both on the main campus and  at study centres across the south of England.  The main campus also has a large annual intake of adult, mental health and child nurses.  Persuading staff at uni that there was a sound rationale for running the conference was easy; raising funding in economically difficult times was less so.  Still, if my three years’ training taught me anything it was that you NEVER GIVE UP and THINK OUTSIDE THE BOX (I might get these tattooed somewhere).    Ben Thomas (Professional Advisor for Mental Health and Learning Disability Nursing at the Department of Health) was, as usual, fully supportive of the project and offered financial support.  I just had to raise the rest.  By this time I was almost finished at university and had already been offered my first job with Hertfordshire Partnership University (NHS) Foundation Trust (HPFT) and it dawned on me that the event could also have a positive impact on the already strong relationship between the university and the Trust.  I set about writing a business plan (transferring skills learned in my imagination and innovation dissertation module – thank you, thank you, thank you!), highlighting the way in which such an initiative could enhance student experience as well as improving the service provided by the Trust.  Thankfully, both parties agreed without much persuasion to put in the remaining balance.


The next step was to ask to attend HPFT’s Making Services Better group; a panel of service users, carers, advocates and staff who meet each month to drive forward improvements within the trust.   This was one of the few times I felt really nervous, what if they didn’t like me? What if they thought it was a stupid idea/waste of time/waste of money? The event was, after all, to give them a platform from which to speak to healthcare professionals and students.  Needless to say, I was met with an avalanche of enthusiasm and ideas; from venues to speakers and from ‘meet and greet-ers’ to writers.


And this is where we are up to.  Almost nine months since the initial idea and conversation we are finally forming a working party.  Tomorrow I will visit the venue with Peter, a member of the Making Services Better group.  On Tuesday I will visit the university to speak to 2nd year nursing students across all branches.  An initial email has, unsurprisingly, generated a great response, but so far only from learning disability nursing students.  And here lies the first, big challenge; how to engage and interest students while they are still training so that they carry learning disability awareness forward with them into practice?

Clare Manley is a colleague of mine at HPFT where she works as an Expert by Experience.  She will be coming with me to university on Tuesday to speak to students and will also be writing this blog alongside me from her perspective.


All I want is for All Adults with learning difficulties to have a voice because lots of them don’t which is such a great shame. I think the reason most of them have trouble speaking is that they’re scared and frightened of what ‘Normal People’ would say and how they would react to them.


I live in a block of flats with quite a few adults with learning difficulties and I’m trying my hardest to help them but get so frustrated. We go to members and staff meetings and some members go but won’t talk.


I also wish that shops would give adults with learning difficulties a chance of work.  We can do the job but it may take longer for us to listen and take everything in when someone talks to us.


My name is Clare Manley and I have been through so much but look at me now; an Adult with Learning Difficulties working for the NHS and loving it.


I’m hoping that this conference will give me a lot more experience so that I can help more adults with learning difficulties.


Finally…  The most important aspect is that we help spread the message that we should all be starting from the point of view that we are all individuals, all people, all with different needs and go from there – regardless of ability.   If we get it right for the most vulnerable in society we’ll get it right for everyone.

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