Here is a list of literature regarding the care of People With Learning Disabilities. Please email firstname.lastname@example.org if you would like to comment on, add or edit any entries in this list.
Autism Act 2009
Care Act 2014
Dementia and People with learning disabilities
Valuing people and Valuing people now
Equality act 2010
MCA (mental capacity act) 2005
DOLs (Cheshire west ruling/ update) 2014
Human Rights Act 1998
Disability discrimination act 1995
Making Safeguarding Personal 2015
A Life Like Any Other? Human Rights of Adults with Learning Disabilities
‘Don’t Box Me In!’ – Disability Identity and Transition to young adult life
Supporting People Review
Sexual Offences Act 2003
National Health service and community care act 1990
Learning Disabilities; Challenging behaviour (QS101) – NICE
Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges – NICE
Positive and Safe Reducing Restrictive Practice
Rapid Tranquillisation -NICE
Strengthening The Commitment One Year On
Breaking Point – Mencap
Brief Guide: Restraint (Physical and Mechanical)
Death by Indifference: 74 deaths and counting – Mencap
Confidential Inquiry into premature deaths of people with learning disabilities
Health and Social Care Act 2012
Carers and Disabled Children Act 2000
Care Standards Act 2000
People with Learning Disabilities in England 2011
Scottish Good Practice Guidelines for Supporting Parents with Learning Disabilities
Adults with Incapacity (Scotland) Act 2000
Social Work (Scotland) Act 1968
The Keys to life – Improving quality of life for people with learning disabilities
Adult Support and Protection (Scotland) Act 2007
Children (Scotland) Act 1995
Getting It Right For Every Child (GIRFEC)
Mental Health (Care and Treatment) Act 2003
Strengthening the commitment – The Scottish Government
Good practice framework for people with a learning disability requiring planned secondary care.
Practice Guidance on developing a commissioning strategy for people with a learning disability.
The self-assessment checklist for monitoring services for people with learning disability and challenging behaviour
Learning Disability Strategy: Section 7
Safeguarding of Children and Vulnerable Adults in Mental Health and Learning Disability Hospitals in Northern Ireland
UN Convention on the Rights of Persons with Disabilities
Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003
As a nurse, there are a nursing assessments that we can use to help us provide good care to our patients. This blog is a list of assessment tools that have been suggested by people on the ldnurse.com group on Facebook on the 9th of decemeber 2015. Here are the 19 Assessments that were suggested.
‘MUST’ is an acronym for Malnutrition Universal Screening Tool. It has been developed by BAPEN for identifying those at risk of malnutrition or Obesity.
The assessment uses the BMI (body mass index) chart, a weight loss score and a acute disease effect score. It also contains alternative measurement instructions and tables estimating the height of a person from the ulna length and the BMI category of a person from the mid upper arm circumference.
To download the assessment and for more information click on the link below.
2. The Waterlow Score
The Waterlow score, created by Judy Waterlow, is a commonly used risk assessment and prevention tool for pressure sore. Its really simplistic and easy to use. For more information and to download a copy of the assessment tool please visit Judy Waterlows website by following the link below.
The HoNOS (Health of the Nation outcome scales) was created to measure the health and social functioning of people with severe mental illness. It consists of 12 items which measure behaviour, impairment, symptoms and social functioning. For more information click the link below.
‘LENSES’, an acronym for liverpool university neuroleptic side effect rating scale, is a tool used to measure the side effects of antipsychotic medications. It consists of 51 questions in total which 10 are ‘red herrings’ designed with the purpose to test the robustness of the results.
5. Glasgow depression scale
The Glasgow depression has been developed for individuals with a learning disability to indicate depression and anxiety. Click the link below to view the scale. A score of over 13 indicates depressions with a score of 15 above indicating anxiety.
“DLD’ is an Acronym for Dementia Learning Disability. Its a questionnaire for carers to asses cognitive function as a result of dementia. The questionnaire is available to purchase by follow the link below.
9. ABS 3
‘ABS 3’ is an acronym for the third addition for the adaptive behaviour assessment system. Not only does it assess for adaptive behaviour, it also has other uses which can be found by following the link below.
‘PPP’ is an acronym for Paediatric Pain Profile. It is a behaviour rating scale for assessing pain in children with severe physical and learning impairments. For more information click on the link below.
11. Outcome Stars
Outcomes star or Spectrum Star is an assessment designed for adults to enable them to manage there autism and make choices for them. Outcome star have a lot of information about the assessment on there website. To visit please click on the link below.
Grist is an acronym for Galatean Risk and Safety Tool. Its developer states its a web-based decision support for mental-health risk, safety, and wellbeing. For more information on GRiST and it concept, visit the website by clicking the link below.
DSQIID is an acronym for Dementia Screening Questionnaire for Individuals with Intellectual disabilities. Created by Professor Shoumitro Deb, it can be downloaded from the University of Birmingham website by following the link below.
The Vinelands-II is the Vineland Adaptive Behaviour Scale (second addition). The aim of the scales is to measure adaptive behaviour from birth to adulthood. for more information and to purchase, please click on the link below which will direct you to pearsonclinical.com
15 . MEWS
MEWS is an acronym for modified early warning systems. Is a simple system where the nurse takes and records a persons vital signs and if they fall into a red zone on the chart, then the nurse is prompted to take a MEWS score. For more information please click on the link below.
BBAT is a acronym brief behavioural analysis tool. Its a informant based assessment tool to use in functional analysis. For more information and a handy powerpoint presentation, click on the link below.
17. Abbey Pain Scale
The Abbey pain scale has been developed for those with dementia who cannot verbalise. It scores from 0 to 3 and consists of 6 questions. To download the assessment click on the link below.
18 – START
START is an acronym Short-Term assessment of Risk and Treatablity. It gives the clinician an integrated, balanced opinion to evaluate the patients risk across seven domains: violence to others, suicide, self-harm, self-neglect, unauthorized absence, substance use, risk of being victimized. for more information click on the link below.
19 – MOAS
MOAS is an acronym for Modified Overt Aggression Scale. The assessment asks the person completing it to rate the patients aggressive behaviour over the past week. It has been developed to asses four types of aggressive behaviour: verbal aggression, aggression against property, auto aggression and physical aggression. Higher score indicate more aggression. Click on the link the below for more information.
20 – GCS
‘GCS’ is an acronym for Glasgow Coma Scale. The Glasgow Coma Scale provides a practical method for the assessment of a persons level of consciousness in responses to defined stimuli. Click on the link below for more information.
I am so excited to share my latest project with you all as I’ve been working on it for a few months now and it been really difficult at times to not tweet or post information about it. So here I am, taking a big deep breath and finally revealing it to the world.
So as a lot of you already know, I am the creator of The Chardie Easy Read Blood Test App. Now according to the latest statistics, over 300 of you who own iPhones, iPods or iPads have downloaded the app onto your devices. For this, I thank you all! And I haven’t forgot about the easy read apps; I have some amazing updates to share in the new year!
So my new app isn’t an easy read app. In fact its completely different to anything I’ve done or attempted to do before.
The story of the app starts in back in September of 2015. Having made a move to London for a new job, I found myself working with people with neuro-disability rather than learning disability. Furthermore, I was now working with people who, because of a brain injury, couldn’t do some of the things they were able to do before and in some cases, things that the body wouldn’t allow the brain to control anymore. Personally I had never expected to work in this type of environment but sitting here writing this now makes me glad that I found this career path.
But one thing that frustrates me more than anything about any place I’ve worked is the total lack of use of computer technology. I truly believe that in 2015, we should not be writing things down with pen and paper and should be fully utilising the amazing technology around us. Now, this isn’t a statement saying that every place I’ve worked isn’t good enough for not using computer technology but I feel we could be achieving so much more if we used it to its fully potential.
So instead of sitting here moaning about it, I’ve set out a personal challenge to use my skills with technology and start to create things that will benefit peoples lives from patients, family members and of course, the staff.
So this is my first attempt to combat a current pen and paper exercise and digitalise it to make it more efficient. Finding something to work on didn’t actually take me that long. Working in neuro-disability has made me realise that communication can sometimes be a massive barrier and these barriers almost mirror what I’ve seen in learning disability services. One of the systems used is something that is referred to as an alphabet chart.
heres how it works:
Here is the classic AEIOU alphabet chart. The aim of using this chart is to allow the person communicating to select a letter by only given two yes or select signals. This can range from a blink of a eye, nod of the head or even a verbal sound. Once you have established what the persons yes or select signal looks like, its now time to start to use the alphabet chart.
As you can see by how this chart is laid out, the vowels of the alphabet appear as the first letter of each of the 5 lines. These vowels are what are used first to navigate through the lines alphabet chart. So to do this,as the the person using the system, you will need to say ‘A, E, I, O, U’. As you go through each letter, you will need to look out for a signal for yes or select from the person trying to communicate. Once the person signals your at the right vowel line, you basically say the letters that follow on that vowel line. So for example, if the person communicating signals on ‘A’, they are basically saying “the letter I want to select is on the ‘A’ vowel line. You then have to go through the A vowel line and wait for the next signal. This second signal will be the letter which forms part of the word they are trying to spell. So the second signal on this occasion could be for the letter ‘A’ ‘B’ ‘C’ or ‘D’. And selecting a letter is a simple as that.
So this system works and it works really well. However, it takes a lot of practice and it is very slow. Also, having used it myself, it can be very frustrating for both parties if long words and sentences have to be spelt. Imagine using this system, going through the letters and having to write down every letter each time it is selected. Then repeating it over and over again. It can actually be very exhausting (speaking from personal experience!).
A common scenario
A patient who uses this system to communicate goes into another hospital. The hospital staff need to communication with the patient and they know they use an alphabet chart. But what is the alphabet chart? how do you use it? communication needs to happen now and fast, how long does it take to learn how to use this system? So in a real world situation, staff aren’t going to have the time to learn it, especially in busy environments such as A and E. So the only form of accurate communication this patient has all of a sudden is made almost useless. Surely there must be a way in which this system can follow a patient and be easy to use wherever they go?
I think technology could easily solve this situation.
So my personal challenge I set myself was to convert the system currently be used and digitalise it.
My objective were:
It must be easy to use
It must be easy to understand
It must take away the need for pen and paper.
It must be cheap.
It must not take away to much of the human interaction.
It must be able to be picked up by anyone and be able to be used very quickly.
So after a few hours (days and weeks!) of designing and coding, I have created a working app and here for the first time seen anywhere is a demo of it.
Say Hello to A/E/I/O/U
I’m still testing the app and improving it before release. More information on how the app actually works will be available when it can be downloaded from the app store. The app should be completely finished and available to everyone using a iPhone or iPad in early January. To make it assessable to as many people as possible, I can reveal today that the app will be free and hopefully some of you will find it to be a helpful little tool to have on your phone. There will be also other platforms supported in the following weeks.
For now though, I would love to hear back from you all about your first impressions of the app and maybe how you think it will help you in your workplace. Maybe you have a family member who would really benefit from you having this on your phone. If you would like to volunteer to test the app and get a copy of it sooner or want to give me feedback, please email me at email@example.com.
My journey to becoming a learning disability nurse has been a bumpy one to say the least, some of my lowest points have included a breakdown of my relationship, my parents separating, rolling my car into a field, not qualifying for means tested bursary, failing an assignment, being signed off with depression, threatened with a fitness to practice, taking a break in study, moving house three times and returning to complete third year and my final placement whilst heavily pregnant and then with a beautiful newborn baby. Don’t get me wrong it hasn’t all been bad but at times I have truly reflected upon whether I will actually ever complete this course. I am by no means the most academic but my passion for learning disability nursing makes it impossible for me to give up.
When I think about learning disability nursing, I feel a fire in my belly, a tear of joy comes to my eye and I get a warm glow in my heart. I think about the people I have met, the times we have shared, the memories made and the insight into their lives that was gained. A learning disability nurse is many things, we work in a broad range of roles and in a diverse number of settings. Above all we are the loud or sometimes quiet voice of encouragement; we encourage people with learning disabilities to speak up for themselves and each other, we encourage families to maintain their confidence and resilience, we encourage other professionals to open their minds and encourage society to value the contribution and worth of each individual.
There have been several thing’s so far that have encouraged me not to give up, being a student representative on the UK steering group for Strengthening the Commitment, being a part of how Living The Commitment will be taken forward and being quoted in the published report, having a blog published by the Student Nursing Times, attending Positive Choices each year and meeting all the people I would love to be like, being shortlisted for the Student Nursing Times Awards, joining in @WeLDNurses twitter chats, Support from my peers, mentors and idols and most of all the kind words and actions of the people who I have worked in partnership with. I am not blowing my own trumpet but simply saying the world is your oyster! If you have goals and aspirations chase them, and achieve them because when times get tough they are the things that get you through.
In my eyes you can not learn to be a learning disability nurse, by choosing the career you have the privilege of already knowing your vocation in life. As a collective we are the people who want to make a positive difference; we fight for people’s best interests, stand up for people’s rights, uphold their choices, ensure informed decisions are made and safeguard them from harm. We get to know people and put them at the centre of everything we do, when we feel this isn’t the case we challenge the system and the way services are provided. In order to do this we are courageous and brave because we question they way ‘things have always been done’ and are active change agents when immersed in poor culture. Trust me there is no better feeling than seeing the ultimate demise of the institutional ‘communal sock drawer’.
Learning disability nurses highlight people’s strengths and due to the current financial climate become ever more innovative in relation to ensuring a person centred approach is maintained at all times. Realistically we can be the bearer of bad news as more and more funding is cut, however we strive to find alternatives or ways of overcoming barriers that prevent people from receiving the support they want to receive. We reflect upon the implications of our actions, how to manage ethical dilemmas and address power imbalances, whilst adhering to policy and legislation and even get to influence and make changes to it! There is never a clear cut answer or a one fits all approach, and that is the beauty of working in partnership with individuals and their carers and family.
We promote inclusion, variety, dreams, adventure and endless opportunities. We help make people’s aspirations possible without being risk aversive. As a learning disability nurse we work collaboratively with other professionals to ensure accessible information is available and to ensure inequalities are reduced. We focus on enabling people with learning disabilities can maintain good health and gain access to not only specialist but generic services as well. Through acquiring knowledge of local services we signpost accordingly and realise our own limitations. We work closely with social services, schools, colleges, the police, housing, drug and alcohol services, hospitals, mental health services, psychology, sexual health services, occupational therapy, physiotherapy, speech and language therapy and community nursing teams.
We do not conform to a job description, there are times when we have to learn about all sorts of things in order to enhance and build rapport with people. For instance there isn’t a competency to be signed off in relation to reading a bodybuilding magazine to someone who can’t read but when it came to him taking a dose of medication he really needed I succeeded where others had failed because he trusted that I had his best interests at heart and had spent time with him. We take interest in them as a person and what is meaningful in their life. We know what their perfect gift would be at christmas, the way they like their tea, their dislike of baked beans, we know the names of people in their photographs, we see things in shops we know they would love. We know what makes them smile and how to comfort them when they are in pain whether that be physically, emotionally, socially or spiritually. We have the best conversations with them sometimes without saying a single word. We bring joy to them and they bring joy to us.
It has never occurred to me to change branches or to be disheartened when people don’t quite understand what we do because no matter what field of nursing you choose, you are the one who chooses what type of nurse you want to be. I have never regretted my choice because when I lay in bed at night I think about how I fought for a lady to get a cochlear implant when two other hospitals had refused, how the gentleman with no section 17 leave now has 4 hours a day, how the lady who has been abused gained a referral to art therapy because she couldn’t put her emotions into words, how parents received some respite and in fact the person got a break from their parents and the person centred risk assessment that a man created that meant he could still attend the organisation he loves .
Three years ago I found myself travelling to a meeting in Leeds for the UK Steering Group for Strengthening the Commitment; the modernising learning disability nursing agenda was in its infancy and there was a real sense of excitement at the opportunities we were presented with to help shape the profession and ready it for the future.
The three years seem to have flown by, and in that time things have changed dramatically, for me personally and in the wider landscape of health and social care. In moving from my role as a student to a qualified learning disability nurse I have been able to see the impact Strengthening the Commitment has had, and the changes it has wrought. It felt, for me personally, as a document with a real sense of momentum behind it and one which has been so successful because of the enthusiasm, creativity and passion of those supporting its implementation at all levels of the nursing profession.
That is not to say that there were not challenges faced at a UK level and within individual countries and while on my own placements I would often come across brilliant nurses who had not yet heard of the report or engaged with it. However, I have continued to see the embedding of the ethos, values and recommendations of Strengthening the Commitment in clinical practice, nurse research and education and in the independent sector. We have many things to celebrate including the high level of engagement with frontline practitioners, the development of future leaders, a growing evidence base and nurses working in new and exciting roles, sometimes working alongside and influencing those from other fields of nursing. Furthermore, we have seen incredible work come from our implementation groups, the UK Learning and Intellectual Disability Nursing Academic Network and the UK Learning Disability Consultant Nurse Network. Coming into my first clinical post after qualifying, it was really exciting to be working for an organisation that echoed my feelings about Strengthening the Commitment, who had developed their own local action plan, and who had been cited as examples of good practice.
On the 18th June 2015 the UK Steering Group found itself, along with professionals from across the UK, attending the Sharing the Success conference in Derby; this was a celebration of all that had been achieved so far, and the event recognised those services and practitioners who had risen to the challenge set by the original report. However, even given the great strides made by learning disability nurses across the UK it was recognised that there was more to be done. Strengthening the Commitment: Living the Commitment was launched at this event and set out the focus for the next phase of our work.
On 29th September 2015 the UK Steering Group put our heads together in Dublin this time, and a five country approach to learning and intellectual disability nursing was realised. In our talks with colleagues from the Republic of Ireland we could see that they were facing some similar challenges to our UK workforce and some different. Our task was then to identify those areas where we felt there needed to be a five country vision, recognising that each implementation group may also have a different and specific set of priorities. We identified four key areas to focus upon over the next three years:
- Working across the lifespan
- Public Health
- Positive Behaviour Support
We know that the needs of people with learning disabilities are changing and individuals may have more complex needs and are living longer. Learning and intellectual disability nurses have a clear role to play in supporting people with learning disabilities and their families/carers from birth and through childhood and adolescence, where early intervention may have a positive effect on future needs. We also identified the importance utilising the skills and values of learning disability nurses in the provision of good end-of-life care. While we know of nurses and services providing excellent care to individuals of all ages it was agreed there needs to be a more robust approach to this across the five countries, as there appeared to be a great deal of local variation.
The UK Steering Group considered a public health approach to be integral to the role of learning disability nurses, and at this meeting we discussed exploring the work of the Chief Nursing Officers on Personal Population Health Frameworks as well as embedding public health as a core part of our lifespan approach. As part of promoting health and well-being, work will continue to develop the use and application of Positive Behaviour Support within learning disability nursing. Though each country may have taken a different approach to implementation of PBS so far, the core values and aims remain the same, and this is something we want to develop further. Our work will also consider those people with learning disabilities with mental health or forensic needs, and how Positive Behaviour Support can work with other interventions to promote well-being.
Finally, nurses across the UK have risen to the challenges set by Strengthening the Commitment and have demonstrated the skills and abilities needed by the next generation of nurse leaders. Living the Commitment represents a pledge to continue to mentor and develop individuals in order to be able to advance learning disability nursing further over the next three years and beyond.
At the heart of the report and all of the groups and individuals that contribute to the work of Strengthening the Commitment is a desire to improve the lives and health of people with learning disabilities, by ensuring that the profession of learning and intellectual disability nursing has the capacity and capabilities to support them. I feel that though there is more to be done, we have come a long way in a short time, and I look forward to the next three years.
UK Steering Group for Strengthening the Commitment.
Look out for:
- Learning Disability Nurse Research: A Position Paper
- Positive Behaviour Support Framework (for pre-registration)
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.
Hello, my name is Michelle and I have founded a fitness based class for learning disabilities. This has recently started in 2015. We are based in Derby and hold weekly sessions around the county.
The idea come about a few years ago when I was training in my first ‘bodybuilding’ show. I would take my kettlebells to work ( I’m a social support worker) as I didn’t like to miss a day training. My service users would always ask questions about fitness and health and ask what am I doing etc… I found they were really keen to have a go however got bored really quickly. Let’s face it lifting weights can be boring! Even within the community if we attended a group or dance my service users often got bored after twenty minutes and some would disrupt the class which in turn just drew negative attention from the other class users.
After I had completed my shows on stage I went into powerlifting (which I still do today) and was quite amazed what an impact my own fitness story had on the people I support. When I tried to get one to one hours to take service users to the gym they would often shy away from the idea as they were nervous or worried what others would think, this is where I thought of the idea to set up a fitness class just for learning disabilities.
I did some research and was aware that I would need to go back to college and re train so I could become qualified to take the class. I was nervous at first as I have dyslexia and was worried about the learning aspect. I’m a mum to two boys and I work near on full time as well as weight train but this was something I really wanted to do.
I started studying at Derby college in 2014 and become qualified in March 2015 after passing all exams 1st time…yes! Now was the hard bit, setting up a fitness class that is enjoyable, feels welcoming and also engaging. With the help from my college assessor Steve he gave me the confidence to use my support and fitness skills to plan a session. This was when JUMPZ was launched and to date it is a busy class with lots of interest.
In the morning me and my volunteers Cassie, Kenny and Andrea greet everyone with open arms and huge smiles, I then take the register and payments, this can take upto 5 minutes as I like everyone to count their own money (This is helping counting/maths skills). After payment we would separate into two groups, high intensity circuit class at one end of the hall and low intensity ball games at the other end, after around 50 minutes of exercise we often play a game of rounders or bulldog as a whole group.
We receive positive feedback from carers and users since the classes started. We have found the class to improvement listening skills, behaviour and concentration. The service users are asking their parents if they can come which is lovely to hear!
So its all go at the moment, life is busy and my clients are happy. Onwards and upwards!
By Jon Bryant
Some years ago I was asked to use my 30 + years experience as a mainstream video director to transform a 40 page legal tenancy agreement into a “see and hear” version for supported living tenants. As a director understanding my audience and speaking their language has always been an imperative, some struggle with the notion that I make programmes for my audience and not for the client.
So realising I knew very little about this audience I worked with a group of about 10 supported living tenants every step of the way to benchmark my “visual language”. I quickly realised that having a learning disability had nothing to do with emotions or feelings, as these are human traits common to us all, my team of testers also had a wicked sense of humour. This marked a shift in my career away from corporate work to more rewarding pastures where my acquired skills could make a difference.
Being a tad dyslexic means I have a learning disability too so perhaps it was destiny that the inspiring Chris Brown, director of Grassroots Suicide Prevention saw my housing association work on Twitter and got in touch. There are two other people whose confidence in what a bloke with no medical or academic experience was trying to do for people with a learning disability, Glenys Marriot from Headway and a Mr Steve Hardy (whoever he is lol ) it was their validation of my efforts that gave me the all important confidence to stick at it.
Over a period of about a year Grassroots and I slowly gathered research as there is nothing out there except some very academic work that didn’t give me any personal insight. Some of our research was done quite formally via sessions run by Brighton and Hove based advocacy Speak Out and their LD clients.
I also spent that time talking to parents from around the world who so kindly shared the intimate and tragic details of their experiences with a stranger. It was emotionally the hardest research project I have ever taken on, but it gave me a much better feel for the breadth of the LD spectrum and how best to communicate this most difficult of topics.
It’s worth mentioning at this point that I have experienced what it is to have suicidal feelings as a troubled young man and since then the 3 suicides that have touched my life all involved people with learning disabilities.
As ideas and concepts were developed we were so lucky to have a team of people with learning disabilities who were prepared to get involved and give us their vital feedback, which now forms part of our evidence base. It’s a tragic fact that they all knew people who had attempted and sometimes succeeded in hurting themselves or ending their lives, so special thanks to them for their courage and commitment.
In total I spent 18 months creating testing and refining the content of the suicide prevention tool kit, getting the language and tone of voice right was a complex challenge and a labour of love. The LD spectrum as I learned is very broad so finding the “middle way” where I was not patronising to those on the higher functioning side while keeping it accessible for others was a real creative challenge, as was developing the character and the format.
The only way to know that your work works is to test it, so when we finally had a finished product we then ran a pilot for 6 months and as part of that sent copies to LD professors, LD clinicians, LD nurses, experts here and abroad as well as releasing copies to the LD community in Brighton and Hove for feedback.
The degree of approval and positive feedback received has exceeded anything we ever dared expect, all the respected names in this area have endorsed it, LD nurses let us run a tweetchat about it and now we have been invited to present it to an audience of LD clinicians at Kings College in October.
Having got clinical sign off from Brighton and Hove LD team and with 500 copies now out there in the community our vision is simple, it should be a tool available to the NHS, charities and carers nationally. So if might be ever so cheeky please contact Chris firstname.lastname@example.org at Grassroots for details of how you can access the tool kit, it’s waiting right now to help save the life of a person with learning disabilities.
We realised, well I did that if you were in Newcastle listening to a very “southern” voice it might lack the intimacy I believe is so important, also the local resources would differ so to that end I built a lot of flexibility in to the project, so without too much fuss or cost the voice and text can be changed into another local dialect or language if needs be. I feel it so important that the viewers feel that the toolkit is speaking to them.
No other project in my career, I am 61 now, has given me the opportunity to potentially save a life so it’s been hugely rewarding and I see it as my legacy project, giving something back to society and hopefully filling an important gap in the resources that are available to help carers and people with learning disabilities find their reasons for living and not hurting themselves. So big thanks to those who have so skilfully validated what I have been trying to achieve…you know who you are!
Passing from the category of the given into the category of the intolerable: Health inequalities, people with learning disabilities, and the work of the Learning Disabilities Public Health Observatory
Chris Hatton, Lancaster University and the Public Health England Learning Disabilities Team
In the past 15 years, arguably starting with Valuing People (Department of Health, 2001) stating as its first key health action: “Action to reduce health inequalities”, the poorer health, early death and worse access to decent health services has steadily risen up the policy (and research) agenda in England and internationally (see Emerson & Hatton, 2014). Reports highly critical of the way that health services neglected or (mis)treated people with learning disabilities (Disability Rights Commission, 2006; Mencap, 2007) resulted in the English government setting up an independent inquiry, reporting as Healthcare for All (Michael, 2008). Among other recommendations, including setting up the landmark Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (Heslop et al., 2013), there was a recommendation that the English Department of Health should establish a national specialist Public Health Observatory on learning disability in order to ‘raise awareness in the health service of the risk of premature avoidable death, and to promote sustainable good practice in local assessment, management and evaluation of services’ (Michael, 2008).
Following this recommendation, the Learning Disabilities Specialist Public Health Observatory (which has run through a few renaming’s, but has the consistent label of Improving Health and Lives or IHaL; www.ihal.org.uk) began in April 2010, and currently has a contract as part of Public Health England through to March 2017. IHaL is quite unusual in that right from the start it has been a consortium of public health experts (now based in Public Health England), academics (at Lancaster University, of which I am one) and experts in analysing and developing policy and good practice (at the National Development Team for Inclusion).
We have three main aims in IHaL.
First, we try to add to and share collective public health knowledge through the analysis, collation and dissemination of information, and to make this knowledge freely available through reports and factsheets (including easy read versions) – see www.ihal.org.uk/publications. Many of these are regular (often updated every year), including:
- An overview of national statistical information from government departments relevant to the lives of people with learning disabilities (ihal.org.uk/publications/1241/People_with_Learning_Disabilities_in_England_2013)
- Regularly updated Local Health Profiles for each Local Authority in England based on 23 indicators relating to the health and healthcare of people with intellectual disabilities (ihal.org.uk/profiles/)
- Collating information from local areas about their progress in providing better support for people with learning disabilities (the Learning Disabilities Joint Self Assessment Framework ihal.org.uk/publications/1246/Joint_Learning_Disabilities_Health_and_Social_Care_Self-Assessment_Framework_2014) and people with autism (the Autism Self Assessment Framework www.ihal.org.uk/projects/autism2013)
- Reports on coverage of annual health checks for people with learning disabilities (ihal.org.uk/publications/1239/The_Uptake_of_Learning_Disabilities_Health_Checks,_2013_to_2014)
We also produce less regular reports and factsheets on important topics, using:
- New analyses of existing information, or information provided for IHaL, such as the recent report on the prescribing of psychoactive drugs
- Overviews of the research evidence concerning health inequalities and people with learning disabilities that often include new analyses of existing datasets, such as the recent report on the health inequalities experienced by children with learning disabilities
- Systematic reviews of important health topics for people with learning disabilities that have not been systematically reviewed before, such as the recent reviews of the prevalence and mortality risk associated with epilepsy amongst people with learning disabilities (ihal.org.uk/publications/1245/Epilepsy_Factsheets)
- Surveys, for example this report of reasonable adjustments for people with learning disabilities reported by health trusts in England (ihal.org.uk/publications/947/Reasonable_Adjustments)
We are also always looking for examples of good practice to add to our online, searchable database of reasonable adjustments (www.ihal.org.uk/adjustments/).
Identifying (and filling) gaps in knowledge
Second, we identify significant gaps in information and knowledge, and try to work with relevant agencies to fill these gaps and get better information.
So far, new questions to better identify people with learning disabilities in general national surveys are being piloted in the annual Health Survey for England (www.hscic.gov.uk/healthsurveyengland) and the latest English Adult Psychiatric Morbidity Survey (www.natcen.ac.uk/our-research/research/adult-psychiatric-morbidity-survey/). If these questions work well, we hope that we will be able to identify and analyse the experiences of people with learning disabilities within these broader surveys.
We are also close to getting information via the Health and Social Care Information Centre from GP information systems, which will describe at a local level the demography (including mortality) of people with learning disabilities, the prevalence of important long-term illnesses, the management and outcomes of those illnesses, relevant aspects of health related lifestyles and the advice provided for them, and the preventive health interventions people receive.
Advice and support
Third, we provide advice and support to enable people involved in commissioning at local and national level, service providers and people who use services and their families to make better use of the information that is available.
We have produced a number of ‘reasonable adjustments’ guidance reports, combining research evidence, information on relevant legal, policy and practice issues, and example of good practice. Just this year these guidance reports have included: improving support for people with learning disabilities in acute hospitals ,
Major topics and guidance documents are accompanied by free learning events around England (www.ihal.org.uk/events/), and we also keep people updated via twitter (@ihal_talk).
What is IHaL for? A personal view
The poorer health and early death of people with learning disabilities has been common knowledge for a long, long time. In 1929, the estimated life expectancy of people with Down syndrome in the USA was 9 years (Yang, Rasmussen & Friedman, 2002). So why has sustained policy interest in improving the health of people with learning disabilities only been visible for the last 15 years or so?
For me, the bundle of assumptions and attitudes that add up to a broadly eugenicist approach casts a long shadow. Although likely to be wrapped up in euphemisms nowadays, how far away are the attitudes of many people (including some medical and public health professionals) from this 1899 statement from Mary Dendy (a doyenne of eugenics activism): “No one can promise to cure the sufferers who are such a curse to themselves and to society. No one can make the faulty brain into a perfect one, change the diseased rickety body for one glowing with health and beauty, strengthen the feeble will so that it has all the power of the highest and strongest of God’s creatures. These things are beyond the skill of man.” (quote in Jackson, 1996).
My personal view is that the Learning Disabilities Team in Public Health England is part of a coalition trying to challenge these assumptions, by making the health inequalities experienced by people with learning disabilities visible, by arguing that learning disability in itself is not a health condition and that therefore health inequalities are not an inevitable function of learning disability, and by helping those trying to do something about health inequalities (of which learning disability nurses are a really important group) by getting the best information we can get into their hands in ways they can use.
I think we’ve done some good work so far, but we can be a whole lot better and we always want to hear people’s views about how we can do a better job. Our ultimate aim is summed up in this quote from Sir Geoffrey Vickers in 1958: “The landmarks of political, economic and social history are the moments when some condition passed from the category of the given into the category of the intolerable. I believe that the history of public health might well be written as a record of successive re-definings of the unacceptable.” This is where we need to get to about the health inequalities experienced by people with learning disabilities.
Department of Health (2001). Valuing People: A new strategy for learning disability for the 21st century. London: TSO.
Disability Rights Commission. (2006). Equal Treatment – Closing the Gap. London Disability Rights Commission.
Emerson, E., & Hatton, C. (2014). Health Inequalities and People with Intellectual Disabilities. Cambridge: Cambridge University Press.
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). Confidential Inquiry Into Premature Deaths of People with Learning Disabilities. Bristol: Norah Fry Research Centre.
Jackson, M. (1996). Institutional provision for the feeble-minded in Edwardian England: Sandlebridge and the scientific morality of permanent care. In D. Wright & A. Digby (eds.), From idiocy to mental deficiency: Historical perspectives on people with learning disabilities (pp. 161-183). London: Routledge.
Mencap. (2007). Death by Indifference. London: Mencap.
Michael, J. (2008). Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities.
Vickers, G. (1958). What sets the goals of public health? The Lancet, 271, 599-604.
Yang, Q., Rasmussen, S.A. & Friedman, J.M. (2002). Mortality associated with Down’s syndrome in the USA from 1983 to 1997: A population-based study. The Lancet, 359, 2019-1025.
* Thanks to Steve Hardy for helping get this great piece of work onto the website
Wendy Bowler & Becky Hardiman, The Fragile X Society
Fragile X syndrome is the most common, inherited cause of learning disability: affecting around 15,000 people in the UK (around 1 in 4,000 men or boys and 1 in 6,000 girls and women are living with the condition).
What are the characteristics of Fragile X?
Every person with Fragile X is different, but we know that there are patterns of strengths and challenges associated with having Fragile X. One of the greatest challenges, faced by the majority of people with Fragile X, is high levels of anxiety. Social situations, especially with unfamiliar people, can be particularly anxiety-provoking, and people with the condition will often show autistic-like behaviours (such as avoiding eye contact, withdrawing, flapping hands or asking repetitive questions) to help manage their anxiety. Being the focus of others attention, even when this is just being asked a direct question, can be difficult. As a result of these behaviours, around 30% of people with fragile X meet the criteria for an additional diagnosis of autism. Despite these anxieties, however, people with Fragile X are typically very sociable and conscious of others. Simple changes, such as not pressuring eye contact or by giving the person the time and space to feel comfortable, can help to make a real difference.
This characteristic anxiety can be triggered by many different situations for different people. Busy or unfamiliar environments and transitions (even small transitions such as getting out the car) can be especially challenging. This is often exacerbated by sensory processing problems, which can also make day-to-day events seem overwhelming. Individuals may sometimes show behaviours that challenge those supporting them, but this is most commonly their communication of rising anxiety levels or a situation they are finding difficult.
Individuals with Fragile X often have strong visual memories and respond well to visual cues, meaning visual schedules and cues can be particularly useful. Also, people affected by fragile X have relative strengths with simultaneous processing (taking things in as a whole) and more problems with sequential processing (thinking through how to execute a task step-by step). This means that it can be helpful to show all steps in a process visually, when helping someone prepare for an activity.
As its name would suggest Fragile X Syndrome is carried on the X chromosome. This means that there are differences, in general, how the condition affects males and females. Girls and women have two X chromosomes, meaning that their 2nd X can, to varying degrees, compensate for the effects of their “fragile” X. However Males have one X and one Y chromosome, and so they do not have a 2nd compensatory X. As a result, males are typically (though not always) more severely affected than females. For instance, almost all (around 95%) boys and men with fragile X have a learning disability (which may vary from mild to severe), compared to around 60% of girls and women. There are some women with the full Fragile X gene variant who do not experience any day-to-day effects of the condition. However, some females have more severe effects than some males, or some have more subtle but challenging effects of Fragile X. It is important for the needs of girls and women, who may be in some ways less clearly affected, to also be recognised and supported. In mainstream settings, the shyness and anxiety can be particularly challenging and a barrier to social, educational and work opportunities, for instance.
Why is getting the right diagnosis important?
Each person with fragile X is different, and having the label of “Fragile X Syndrome” does not define them. However, getting the right diagnosis is important because understanding the condition means that proactive support can be provided where we know that people may experience challenges and can also point towards interventions that can be more effective, when people are facing difficulties.
Also, as fragile X is a directly inherited condition, any diagnosis within a family has implications for other family members. There is more information on the genetics of fragile X in our introductory booklet, which can be downloaded at http://www.fragilex.org.uk/#!booklets/csl
How can the condition be diagnosed?
The only way that Fragile X can be diagnosed by a genetic (blood) test: it cannot be diagnosed based on appearance or behaviour. These genetic tests are carried out at regional genetic centres based in larger hospitals and the referral must be made by a medical professional. Diagnosis is often in childhood, but, at the Society, we have come across people being diagnosed in adulthood.
How we can help
The Fragile X Society has 3 Support Workers (contact details, below), who all have a background experience in learning disability. We take enquiries from individuals and families affected by Fragile X and professionals working in the field. We have information on the syndrome, including best practice for supporting individuals affected by fragile X. There is also more information on fragile X, including details of our eLearning resource, available on our website www.fragilex.org.uk
You can also join in our chat with WeLDNurses on Tuesday 1st September at 8.30pm (with special guest co-host Professor Jeremy Turk), to discuss health problems and behaviour associated with Fragile X Syndrome. http://www.wecommunities.org/tweet-chats/chat-details/1547
Please do contact us if you are working with someone with Fragile X, or if you want to know more. We are here to provide information, as well as support
Family Support Worker taking enquiries about adults in England, Wales and N Ireland
Wednesday – Friday 9.00-5.00
Family Support Worker taking enquiries in England, Wales and N Ireland
Monday – Thursday 9.00-5.00
Family Support Worker taking all enquiries in Scotland
Monday – Thursday 9.00-5.00
Post comes via Learningdisabilitynurse.com admin Pen Clark