Learning Disability SIG – LASER SIG

Objectives of the LASER SIG

The SIG, one of the first to be set up under ACAMH (in 2008), aims to provide a learning, professional development and peer support forum for CAMHS clinicians who are delivering mental health and psychological services to children and young people with moderate and severe learning difficulties and their carers, as well as for those undertaking research with this client group.

The focus is on SIG members sharing and promoting specialist skills, updating themselves on clinically relevant research and service developments, learning more about evidence based practice in the field and discussing complex cases in a multi disciplinary context. Uniquely, this is the only multi disciplinary forum for professionals (clinicians and academics) working with children and young people with learning disabilities in the UK. This is one of the aspects of the SIG that members value most. Membership of the SIG and presentations by researchers and academics who have active links with clinical practice are encouraged.

  • Meet the branch

    Dr. Matthew Horrocks

    I am a Clinical Psychologist in the Neuropsychiatry and Challenging Behaviour Team for South London and Maudsley NHS trust (SLaM), and a Visiting Lecturer in the Department for Child and Adolescent Psychiatry, King’s College London. My area of expertise are autism spectrum disorders, emotional and behavioural problems in neurodevelopmental conditions, and psychological treatment of anxiety and depression. I am actively involved in research aiming to understand why autistic young people have high rates of mental health difficulties, and how best to develop and improve psychological interventions for those with neurodevelopmental conditions. Do please email me via events@acamh.org

    Orla Unwin

    I am passionate about the ACAMH LASER SIG, and have been involved with this committee for over 15 years. Do please email me via events@acamh.org

  • Background

    The development of mental health services for children and young people with Learning Disabilities in the UK has been sporadic and ad hoc, and indeed in many parts of the country this provision was, until very recently, completely lacking. The last ten or so years have seen more attention directed to service provision in this area by the Department of Health and by mental health commissioners and providers, but the availability of specialist knowledge and skills in assessing and treating children and young people with learning disabilities and mental health problems is still very limited (e.g. Pote & Goodban, 2007).

    Download a pdf of our Sept 2019 issue

  • Christian Boakye: What it’s like to be a Speech and Language Therapist


    In each LASER SIG newsletter, we focus on a different professional role. In this edition Christian Boakye and Gillian Davies give insider accounts of the role of Speech and Language Therapists.

    This article forms part of the LASER SIG Newsletter March 2020.

    Christian Boakye is a Highly Specialist Speech and Language Therapist based in The Wellbeing Team at HM Young Offender Institute Feltham, Barnet, Enfield and Haringey Mental Health Trust.

    As a Speech and Language Therapist working in a prison, I am often asked, “what do you do, and why do prisoners need Speech and Language Therapy?” I’d like to share a little about my working life at HM YOI Feltham.

    Feltham is a Young Offender Institute (YOI) in London that houses around 500 boys and young men aged 15 to 21.  Research shows that more than 60% of young offenders present with speech, language and/or communication difficulties. My role involves highlighting the communication needs of our prisoners and providing direct and indirect support to these young men and colleagues across the prison.

    My role involves highlighting the communication needs of our prisoners and providing direct and indirect support to these young men and colleagues across the prison”

    Providing support at any stage of the prisoner’s journey

    A Speech and Language Therapist may provide support at any stage of a prisoner’s journey.

    To help new arrivals of young people into custody understand prison jargon and the complex words used in the criminal justice system, I offer training on how to recognise and support communication needs to Resettlement Practitioners (Case Workers) who help induct new arrivals. As a result, the Resettlement team have recently purchased and now use ‘Wordbuster’. These are postcard size cards which contain 83 youth justice words explained using simple language, with visual support. The cards also include examples of how the word might be used in conversation and any other meanings the words might have. This way, Resettlement Practitioners are able to check our young men’s understanding of words often used within the criminal justice system and explain them where necessary.

    With the help of a SLT Masters student, we will be producing a ‘jargon buster’ sheet that will go in an induction pack for new arrivals into custody. This sheet will contain prison specific expressions or terms such as ‘canteen’, which in prison describes items a prisoner may order from a prison catalogue as opposed to a place where meals are served.

    I also work with prisoners towards the end of their sentence. I provide support to ensure prisoners are able to understand their licence conditions. Licence conditions are the set of rules prisoners must follow if they are released with still a part of their sentence to serve in the community. If these rules are broken, a prisoner is recalled back into custody. It is therefore important that these conditions are written and explained in a way that the prisoner is able to understand.

    An interesting area for future research may be to explore the number of prisoners who are recalled to prison because of a failure to fully understand their licence conditions; perhaps due to a learning disability or an underlying difficulty with language.

    Social Communication – working with prisoners to form pro-social relationships and stay in employment

    A good ability to form pro-social relationships and stay in employment, are factors that have been shown to decrease the risk of re-offending. I therefore work with some prisoners coming up to their release date on their social communication skills and communication skills for employment. This includes interview skills and support to understand different styles of communication (e.g. passive, assertive, aggressive communication etc.). This work can be completed at any stage of their journey through custody but I find that it is particularly impactful towards the end of their sentence.

    Assessment and support for those in custody

    Not all our young men are sentenced prisoners. Some have been remanded into custody and are awaiting a trial. A few who are sentenced may however have an impending trial for a different offence. On several occasions, I have carried out speech and language assessments with this cohort that have revealed significant language difficulties. In these circumstances, I contact their Solicitors and advise that an ‘Intermediary’ should be requested to support the young man in court. An Intermediary is a professional who advises the court on the person’s ability to communicate and how best to work with that person during the proceedings. This ensures that an individual can meaningfully participate in court proceedings.

    Back in custody, a big part of my role is to support prisoners to understand and participate in the prison regime and interventions offered by various agencies.


    In terms of a client’s speech, I may offer assessment and interventions for prisoners who stammer, present with a lisp or other speech impairments.

    Case example- TD

    I recently worked with a young man with a rare genetic condition that affects his muscles. This affects his posture, gait and speech. I shall refer to this young man as T.D. T.D explained how as a child, he was immensely frustrated and angry about his inability to effectively express himself. He said friends and siblings would pick on him and blame him for things that would then get him in trouble. T.D explained that this frustration developed into anger and a strong will to prove himself “no matter what”. T.D reasoned that the attitude he developed as well as difficulty with anger, contributed to bringing him in contact with the criminal justice system.

    Therapy involved helping T.D to understand his condition and its impact on his speech. T.D was also supported to utilise therapeutic strategies to improve the clarity of his speech. After therapy, T.D expressed increased confidence in his ability to express himself. He also reported decreased anxiety in social situations. He explained that he now feels less inclined to engage in acts of violence as a way of proving himself.


    Another part of my role as a Speech and Language Therapist is to assess the language skills of a prisoner and liaise with prison staff and facilitators of interventions about the best ways to present information so the prisoner is able to understand. This is done alongside therapy to improve a prisoner’s insight into their communication strengths and needs. Therapy also offers strategies to help the individual improve their communication skills. ‘Communication guidelines’ are written collaboratively with the prisoner and become the prisoner’s ‘communication passport’ which is shared with all relevant staff.

    Case Example

    On the day of writing this article, I went to a Challenge Support and Intervention Plan (CSIP) meeting for one of my clients. This is a meeting designed to support individuals who persistently engage in acts of violence. In the meeting, my client’s communication passport was credited with helping to significantly reduce the number of violent incidents he was involved in. This is because the majority of these incidents were caused by communication breakdown. Due to limited language skills, this young man had poor ability to express himself as well as understand information or instructions given. His communication passport highlighted these difficulties and gave staff guidance on how to effectively communicate with him. Indeed, individuals with communication difficulties are likely to demonstrate aggressive or aversive behaviour.

    Help to improve participation

    My clients often say: “I didn’t pay attention in school because I didn’t understand the teacher”. Some were too embarrassed to ask for help whilst some found it easier to truant or be the ‘class clown’.  Similarly in custody, an individual may choose not to participate in interventions or even socialise with peers and staff. Intervention from a Speech and Language Therapist therefore helps to improve participation.

    Autism Pathway

    Lastly, I am proud to lead our Autism Pathway at HM YOI Feltham. I work with a Multi-Disciplinary Team consisting of Psychiatrists, Psychologists, Health Psychologists, Nurses, Occupational Therapists and myself as a Speech and Language Therapist. The pathway offers a diagnostic service and provides support for prisoners presenting with Autism Spectrum Conditions.

    I thoroughly enjoy the varied nature of my role. I am passionate about supporting the population I work with. These are often troubled young men with complex histories. My hope is to be able to contribute something meaningful that will help them on their journey, and to continue to highlight the important role that effective communication plays in their rehabilitation.

  • Gillian Davies: What it’s like to be a Speech and Language Therapist


    In each LASER SIG newsletter, we focus on a different professional role. In this edition and Gillian Davies and Christian Boakye give insider accounts of the role of Speech and Language Therapists.

    This article forms part of the LASER SIG Newsletter March 2020.

    Gillian Davies works across Lambeth and Southwark boroughs in London as a Senior Specialist Speech and Language Therapist in the Evelina London Community Speech and Language Therapy service (Guy’s and St Thomas’s NHS Foundation Trust). She is based within the Autism and Related Disorders (ARD) service, Community Complex Feeding service and a secondary school for adolescents with Learning Disability (LD), some of whom also have Autism Spectrum Disorder (ASD). She is also involved with service development projects, which includes gathering parent/ child feedback and sharing findings.

    Gillian tells us about her role

    Since graduating with a BSc in Speech Pathology and Therapy, I have worked with children and young people (CYP) with speech, language and communication needs (SLCN) in clinics, child development centres, mainstream schools, resource bases, and specialist school settings. Speech and Language Therapists work on assessing and developing communication skills, and the aim is to develop functional communication using an individual’s most effective modality. If spoken language is not accessible, alternative forms of communication will be considered, which could include signing, or the use of objects, pictures or symbols. Speech and Language Therapists may also work on eating and drinking, to ensure a safe swallow and maximise nutritional intake, and possibly aiming to reduce anxiety and aversions related to food textures. Working with CYP with complex developmental needs requires specialist post-graduate training, and I have completed training in the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2), Post-Graduate Dysphagia and Sequential Oral Sensory Approach to Feeding. I have also recently completed an MSc in Language and Communication Impairment in Children.

    What is a typical day for you?

    Every day is different! Working with a variety of professionals involves having a flexible, open approach, listening to and valuing other’s contributions and opinions, and actively participating and contributing to the teams. Multidisciplinary team working enables me to consider communication, or feeding, within the context of the whole child and the wider family, and take all factors contributing to a child’s presentation into account, as well as protective and compounding factors. This allows for differential diagnoses, and holistic care plans to be developed, to maximise progress. I use strategies including solution-focused questions or coaching techniques to gain insight into a parent or caregivers’ understanding of their child’s needs, to underpin recommendations and inform intervention plans.

    Autism and Related Disorders Service (ARD)

    The ARD service uses gold-standard diagnostic assessments and in these clinics, I administer the ADOS-2 while the paediatrician completes a developmental history with the parent. As well as assessing communication development during the ADOS-2 assessments, Speech and Language Therapists are uniquely placed to assess features of structural language disorder including grammatical errors, difficulties with sentence formulation, and word finding difficulties. I maintain a calm and approachable manner to put children at ease and encourage their best communication and interaction.

    The ARD service provides support to parents in the form of twice-monthly workshops. Post-diagnosis workshops cover more general information about ASD and are aimed towards families following diagnosis, or who would like signposting to local services. Topic-based workshops focus on areas including early communication, attention, mental health, behaviour. We cover the theory, and consider challenges faced by families, before discussing strategies and supporting parents to problem-solve and identify approaches which may be helpful. The groups are usually well-attended and the discussions are varied and unpredictable, which has helped me understand the value of these opportunities for parents to share their thoughts, feelings and opinions. I am increasingly able to ‘go with the flow’ in order to provide an open and safe space for these discussions, which has subsequently helped me manage difficult conversations in other situations. Parents often provide support and advice to each other, which can be more accessible and meaningful than when it comes from a professional, and it is heartening to enable this to happen.

    The Feeding Service

    The Feeding service assesses and provides intervention for CYP with restricted eating and aversive responses to sensory aspects of food. Approximately 50% of the CYP seen in this clinic have ASD, and may or may not have LD. Each professional in the team (Paediatrician, Dietitian, Clinical Psychologist, Occupational Therapist and Speech and Language Therapist) is directly involved in the hour-long assessment. The Speech and Language Therapy role is to informally assess, through observation and play, the child’s communication level and response to a variety of food. If they eat anything, their oral motor skills and swallow are also assessed. An action plan is agreed with parents which may involve a parent workshop, a home or school visit, or ‘food school’ therapy sessions. Therapy involves supporting children and their families to progress through the steps to eating including tolerating, looking, touching, and smelling food, before eating. This is done through play with accepted food and gradually introducing items linked by colour or shape. I am always impressed by families’ efforts and appreciate their pleasure when their child explores (or tastes!) a new food.

    Secondary School work

    My role in the secondary school involves working collaboratively with Teaching Assistants, Class Teachers and the school’s SENCO (Special Educational Needs Co-ordinator), delivering training, assessing the communication environment and the communication needs of students, as well as planning, providing and evaluating intervention, with the support from teaching staff. In this context, communication can often manifest through behaviour which challenges, particularly for students who do not have a functional communication system, or for those with emotional regulation needs impacting on their expressive communication.

    Part of the Speech and Language Therapy role is to support teaching staff to understand the purpose of behaviour by using strategies such as ABC (antecedent, behaviour, consequence) charts, and identifying environmental adaptations required to maximise communication, or any new communication skills the student may need to learn. Working in schools helps me understand the educational demands on students with learning needs, and the importance of effective communication to access learning opportunities.

    What are the challenges?

    True multidisciplinary working can be challenging, due to a range of factors such as timetabling/ working patterns, budget constraints, and waiting times. Managing parental understanding of their child or young person’s stage of development can be difficult particularly when considering expectations related to progress and outcomes. Developing and maintaining the understanding that children and young people with speech, language and communication needs (SLCN) should be targeted within every day, functional experiences not isolated to the work of a Speech and Language Therapist, is also a challenge. I am mindful of the vocabulary I use when talking to families and I avoid using jargon or technical terms.

    What makes the role worthwhile?

    Working with families and empowering them to understand and independently manage their child or young person’s needs is extremely rewarding. Supporting parents to identify strategies and ideas they can implement at home, and seeing individual progress, as well as increasing the confidence of families, makes surmounting the barriers worthwhile. I am interested in the service development side of Speech and Language Therapy within neurodevelopmental conditions and, alongside Paediatricians, Clinical Psychologists and Educational Psychologists, I have been involved in planning and putting a bid together for funding to develop a community LD pathway. Similarly, I work closely with the Speech and Language Therapy Developmental Language Disorder (DLD) team to consider how the DLD assessment, diagnostic and intervention pathways link to the ARD service, and how they potentially link to a future LD pathway. I am hopeful of a more streamlined approach between services and teams to improve the experiences and outcomes of the CYP we work with.

  • Good intentions, good enough?

    Daniel Brennan, Assistant Psychologist at Ealing Intensive Therapeutic and Short Break Service (ITSBS) provides a summary of Lenehan, C. and Geraghty, M.  (2017) “Good intentions, good enough?: a review of the experiences and outcomes of children and young people with learning disabilities in residential special schools and colleges“, Department of Health.

    This article forms part of the LASER SIG Newsletter September 2019. Learn more about the LASER SIG.

    The Lenehan review is a broad survey of the provision of residential school placements across the UK. Published in 2017, the review involved consultation with a wide range of stakeholders including parents and carers, 30 schools and colleges, and 20 Local Authorities, in addition to OFSTED, CQC, and the SEND Tribunal. The review took place in the first years of the implementation of the Children and Families Act 2014, which seeks to empower families of young people with SEND, by offering more choice of educational and health provisions and improving the assessment of special education needs. In this context, Dame Lenehan’s focus on residential school placements is not so narrow as it might first appear; more than 6,000 children and young people spend much of their childhood in residential schools, many attending schools outside their local community. Moreover, residential school placements are estimated to cost the taxpayer approximately £500 million per annum. The Lenehan Review presents evidence from innovative projects across the country that show that outcomes for children and young people with SEND can be improved significantly, whilst reducing the cost of their education to Local Authorities.

    “Some LAs have introduced their own PBS services, with one estimating a saving of £1.8M over 4 years by enabling children and young people to stay within their family homes and at local special schools.”

    It is clear from the report that the population of children and young people who attend residential school is heterogeneous and their pathways to residential schools are varied. More than 70% of children and young people who attend residential schools fall into one of two categories; those with diagnoses of ASD, communication difficulties, or severe learning disabilities, who display challenging behaviour, and those with Social, Emotional, and Mental Health diagnoses, who display challenging behaviour.

    For many of these young people, their mainstream school placements have been unable to support them adequately at earlier stages of development leading to an intensification of their needs. This tends to cause an increase in the severity and frequency of challenging behaviour over time and, in many cases, the eventual breakdown of the school placement. Children and young people with SEMH diagnoses are twenty times more likely, and those with ASD three times more likely, to be excluded from school than their peers without SEND. The remaining 30% of young people in residential schools are made up of those with Profound and Multiple Learning Disabilities, who require complex support from multiple agencies, and those with additional needs but without a learning disability, who usually have a physical disability. The former often seek residential school placement due to the complexity of their medical needs requiring additional care which would not be feasible in the home. The latter group are often young people who could be educated in local, non-residential schools if suitable accommodation was made for their disability.

    However, Lenehan reports that these young people have usually sought residential placements after appalling (and sometimes multiple) experiences in local schools. The simple description of many young people’s experiences offers some recommendations for reducing the use of residential placements.

    “Whether for a traumatised child supported to overcome their experiences, an autistic child struggling with anxiety but transformed by positive behaviour support, or a child with profound and multiple learning difficulties providing valuable skills to their community while on work experience, we know that the right support can be life-changing for these children and young people.”

    The Lenehan review suggests there is a dire need for processes to identify those with additional needs early in order to maximise the impact of intervention. Secondly, there is a clear need for all mainstream and specialist schools to have a greater understanding of behaviour that challenges and to embed a Positive Behaviour Support approach to supporting these young people. Thirdly, there is a need for a more holistic approach to supporting young people with disabilities and complex needs which requires a multi-disciplinary, person-centred approach. Lenehan notes the work being carried out by the Gloucestershire Local Authority using a “whole system around the child” model as exemplary. The report also recommends that CCGs provide a greater range of mental health and short breaks services to reduce the pressure on families whilst also up-skilling parents to apply PBS strategies in the home.

    Dame Lenehan notes the Intensive Therapeutic and Short Breaks Service in Ealing as a model for this kind of work. In addition to these recommendations, the Lenehan review suggests that the planning conducted by local authorities around the use of residential schools requires improvements. The report paints a picture of LAs that struggle to proactively fund services that will reduce the need for residential placements, such as intensive PBS teams, whilst also being reluctant to use residential placements due to high costs and the desire to keep children living locally.

    Where LAs plan proactively to meet the needs of this population, such as in Essex and Hertfordshire, children and young people with additional needs have more positive experiences of schooling, are able to continue to live locally, and expensive, out-of-area residential placements can be avoided.

  • Just what does a learning disability nurse do?

    The ACAMH LASER SIG (Learning Disability Special Interest Group) talked to Julie Blackaby and Noeleen Morritt give an insight into the role of learning disability nurse. This article forms part of the LASER SIG Newsletter September 2019.

    Julie Blackaby
    Julie Blackaby

    Julie manages a Learning Disability Children’s Emotional Wellbeing and Mental Health (EWMHS) Community Team in Essex. Her team works with children and young people aged between 4-18 years with a severe to profound learning disability and who have an additional emotional and/or mental health issue.

    Noeleen Morritt
    Noeleen Morritt

    Noeleen Morritt works for the London Borough of Croydon in CAMHS. The present LD nurse role in CAMHS is full time but is not fully ringfenced for learning disabilities.

    What does a learning disability nurse do?

    Julie: Learning Disability Nurses will have completed training to support and enable people with a learning disability, in a wide variety of settings. We are lifelong learners, and I feel this means that it is hard to define what a Learning Disability (LD) Nurse does as we have such individual career pathways.  Common for all is the training centred on understanding the impact of a learning disability on the individual and using that knowledge to make reasonable adjustments to support clients to reach their full potential. I worked with adults with challenging behaviours and then later became a Community Nurse. In 2001, I moved to CAMHS working with young people with LD and ADHD, young people without LD and with mental health issues.  In 2006 I joined the team I now manage as a clinical nurse specialist.  I was involved in developing and setting up the service.

    Noeleen: When asked to capture the typical day for me as a learning disability (LD) nurse, I wanted to creep into a dark corner and hide. Such a feeling is in itself interesting, and resulted in my asking, ‘just what is the function of your behavior?’ Clearly avoidance.

    Avoidance of the question asked long before my professional career began, ‘just what do LD nurses do?’ Previous responses to my explanation of the role, were swiftly followed by the comment, ‘ah, so you are not proper nurses then’. Despite the passing of years, I still occasionally hear this and am disheartened by it. A recent recruitment drive for LD nurses depicted us wearing uniforms and working in the acute sector. I suspect the vast majority working for the NHS are offering an outreach service in the community.

    LD nursing in the NHS has become incredibly diverse over recent years. We can be found in places traditionally unexpected, practicing in fields of medicine which would not have been considered possible at the start of my career.

    As I near the end of my 34th year of LD nursing I have found myself reflecting on the diversity of my nursing experiences. The profession has struggled with identity over the decades. On more than one occasion I have been told ‘the branch of nursing is dead’. However, as I approach the end of my career, I think it is probably the liveliest and most exciting it has been since the advent of the NHS. I am not sure if this perception is isolated to my area of work or if it’s something other LD nurses are experiencing. I hope to be more informed on this following a pending event celebrating 100 years of LD nursing.

    Where do you work?

    Noeleen: I work in the London Borough of Croydon. I moved from the adult LD services to a new post in Children’s Services. I was initially taken aback by the completely different culture in service delivery. It was like learning a whole new language, moving away from the traditional focus of work in adult LD community nursing to defining a LD role in the trust for children, creating a service and seeking opportunities for development.

    Initially I was placed in the safeguarding team for children. The team had followed the normal structure of named nurses who were from child and health visiting background. Joining as a LD nurse brought a whole new dynamic to the service. The team readily made use of my knowledge on disability, mental health and laws about both, as well as my knowledge about behaviour, to contribute to consultations, investigations and teaching. It quickly became apparent that  the skills of the LD nurse were transferable to areas previously deemed out of bounds. Importantly they were recognised as offering a unique perspective on safeguarding. I found myself supporting risk assessments in maternity and participating in child death reviews, as well as, what I suppose could be referred to as the day-to-day work of an LD nurse. The safeguarding referrals we received for young people with LD often cited vulnerability surrounding sexual exploitation. While in the team and under the supervision of the FPA, I developed a teaching pack including sex education, consent etc.

    In partnership with Croydon CAMHS we developed a 10 week behaviour programme for parents whose children have a learning disability. This has run for several years now, the outcomes and retention rates are positive. Many participants comment on the need for this at a younger age. Coupled with this and having good links with the community paediatricians, I was rapidly becoming overwhelmed with referrals for children under the age of 5 requesting support with behavior. So, I adapted the behaviour programme for younger children with LD. This is now in its third year of running and I have recently secured funding for its on-going delivery.

    Last year I accepted a job in Croydon CAMHS. The team had previously had a psychologist with dedicated LD time but had not had an LD nurse in the service before. As with my previous move, the LD nurse role has brought in a different dynamic and philosophy of care. The team is expanding, incorporating new initiatives such as CWPs and IAPT trainees. Presently the LD service within CAMHS consists of myself, 3 sessions of a psychiatrist along with an IAPT trainee who has 1.5 days for LD / ASD casework.  We are commissioned to provide tier 3 work. Given the limited provision the service is preserved for the children and young people with severe to moderate LD. However, recent negotiations with Croydon Health Services has resulted in them funding an additional 2 posts within CAMHS to develop a tier 2 provision.

    The present LD nurse role in CAMHS is full time but is not fully ringfenced for learning disabilities. I complete ASD assessments, which include administering ADOS on children without learning disabilities. I had to adjust to this form of assessment, not only because it was a new tool to me but also children spoke in phrases and sentences when most of the children I have worked with throughout my career have had very limited communication.

    What is a typical day for you?

    Julie: As a clinical nurse specialist and manager there is no typical day. There are tasks and interventions that are a daily part of my job. In my role as a clinical nurse specialist I complete home visits, providing psycho-education and parent support. We assess and support a child’s mental health issues. To aid understanding, I might complete sensory profile and sleep assessments. We work with children’s systems to improve understanding, developing plans to support children. I lead our six-session series of workshops for parents and provide training to other professionals on emotional wellbeing.

    I provided consultation to local “Children with Disability Teams”, special schools, EWMHS Services and other professionals. I can be the key clinician attending psychiatry assessments and clinics liaising with psychiatrists about the children on our caseload. My role now also includes leading on developing the Team and our new members of staff as well as providing clinical supervision and guidance to my Team alongside the Team’s Lead Clinician.

    Noeleen: I find it hard to capture a typical day for me as an LD nurse. One of the many joys about my job is the fact that no two days are the same. I expect the unexpected and enjoy it beyond any other job I can imagine. It is creative, flexible, fun and ever developing.

    What is the challenge?

    Julie: The challenges as with all work in the NHS and in Social Care is the balance of an increasing workload with providing a service to be proud of and that meets the needs of our client group. One difficulty is that our children and their families live in multi-layered systems of professionals and organisations, all providing a variety of packages.  Our children’s emotional wellbeing is so reliant on their parents/carers having appropriate support, and children being able to access the right resources, that it can often be very hard to effect changes we feel are needed.  As a health team we can influence a number of these issues but are not always in a place to effect change. It can be very frustrating when it means we cannot improve what we think is impacting on our child and family’s emotional wellbeing, because they are so significantly interlinked.

    Noeleen: Beyond those we all face working in the NHS, I think the challenge which I feel I have never managed well is ‘just what do LD nurses do’. I take some comfort in knowing that several reports have been produced over the years about our role and none have really impacted on other professionals’ understanding. It appears to be direct involvement with us which informs opinions.

    What makes the role worthwhile?

    Julie: The times we do make a difference for a family, the systems around them and their child.  This may be:

    • expanding a family’s understanding so they feel more able to support their child.  We may not have actively changed behaviour, but the additional knowledge can be a powerful tool for change.
    • interventions that have made a difference
    • when families share that our support and understanding of their child and their issues, does make a difference to their lives and to the life of their child.

    Noeleen: There are some significant things such as being given money to develop a service before I retire from the NHS, to the tiniest things that make it worthwhile for me. The parent for example who says our intervention is ‘family life changing’, the little boy who recently told me, ‘it can’t rain cats and dogs, it can only rain water’, the picture a 5 year old drew for me of his family and pointed me out. I am known in my office for telling stories from my 34 years as a LD nurse, sharing the unique world of learning disability and making people laugh. I have had the best career.