This research shows the frequent lack of well-embedded local policies to support children with learning disabilities in general hospitals and the current variation in practice. Around , children in the UK have a learning disability. How this impacts their lives varies, but comprehension and communication are commonly affected.
Recent service reviews have demonstrated that care for those with learning disabilities is often not patient-centred. The CQC subsequently recommended a range of initiatives, such as flagging systems to identify children with learning disabilities on admission, hospital passports, plans for communicating with children and their carers and dedicated learning disability nurses. These initiatives are likely to enable children and their carers to communicate their needs more effectively and increase awareness throughout the hospital.
However, it is unclear if and how they are being implemented across the country. Pay More Attention is a mixed methods study across England. This first phase comprised interviews with hospital staff about local learning disabilities policies for children, and staff surveys about their attitudes and awareness of policy and practice on caring for children with learning disabilities and long-term conditions. Staff with a range of professional backgrounds took part.
For the interviews, they had to hold a senior clinical or managerial role or work specifically with children and young people with learning disabilities. There was wide variation in local policies and service provision. None of the 65 interviewees reported having a standalone policy for children and young people with learning disabilities. Interviewees from 9 of 22 sites either did not know what polices existed or showed a lack of consensus in their knowledge.
Staff attitudes generally revealed lack of confidence in caring for children with learning disabilities. Staff reported less capacity and lower levels of capability and confidence in meeting the needs of children and young people with learning disabilities compared to those without.
Staff showed uncertainty about what was in place, or what should be in place for children with learning disabilities. This was observed within and across institutions. Fewer than half of 2, survey respondents said they were routinely informed that a child had learning disabilities. A quarter did not know what systems were in place to identify learning disability.
The broader NHS England guidance for services for children and young people with a learning disability, autism or both highlights the need for hospital passports, a clear plan for any medical appointments, and reasonable adjustments such as scheduling appointments at a quieter time of day. There are two NICE guidelines for people with learning disabilities and challenging behaviour, one looking at service design and delivery and one focusing on interventions Both stress the need for a designated leadership team, effective local care pathways and sufficient staff training and support.
While the principles of good practice and some good care exist for children with learning disabilities, more needs to be done to ensure they become part of the culture in all hospitals that care for children with learning disabilities and medical conditions. This work package has highlighted the variation in care. The on-going elements of this study will take a more in-depth look into patient and carer perspectives at four hospitals.
How to improve health outcomes for patients with learning disabilities
Additional research will be needed to explore how the variation can be reduced. Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. Care Quality Commission.
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Books Beyond Words are full-colour picture books that address some of the problems in understanding experienced by people with intellectual and communication difficulties. In the past few years, more than 1, future doctors at St.
George's, University of London, have benefited from training by actors with intellectual disabilities. We have designed a leaflet to help men with learning disabilities to learn more about their balls testicles and how to look after them. It is important for every man to check regularly and to see his doctor immediately if he finds any changes. For persons with intellectual disabilities, the experience may be particularly scary because they may not understand what is happening around them. This technique facilitates positive engagement with children and adults, many of whom are on the autistic spectrum, and with whom communication is often difficult.
An examination of reasonable adjustments in order to reduce health inequalities for people with learning disabilities.
It helped the nurses even ask what I could do. Service users have access to chlamydia Do not make assumptions about the person. You need to screening, condoms and information on the take time to establish what their abilities are and what learning disability section on the sexual they need support for. Ask the person what they can do health website, as well as peer training — a for themselves, what support they need and how they two day sexual health course delivered by prefer the support to be given. It is important that people with learning disabilities do not feel disempowered.
It may be frustrating for the Signposting clinician to watch an individual seemingly struggle with People First is an organisation run by and for people a task and it may seem easier to do it for them. It may with learning difficulties to raise awareness of, and take the person longer to complete certain tasks but campaign for the rights of, people with learning giving them the opportunity to work through it difficulties, and to support self-advocacy groups across themselves will enhance feelings of self-worth and the country.
The student tried syndrome and who has dementia, was to make it clear that she was listening to him, admitted as an inpatient on a ward at St. Her friend Gwen was worried patient, the patient opened up more, while that the nursing and other staff may not be his levels of distress were visibly less. They also running a project called Treat Me Right, discovered that she likes Elvis Presley so which has collaborated with people using prior to any procedures, for example blood services, carers, advocacy groups and pressure monitoring, they would talk to her hospital staff.
The project is designed to about Elvis. One of the care and dignity was greatly improved. The while they were in hospital.
To deal with this patient was very distressed at the time of issue they have developed About Me Plans, admission. The plans are short with the patient on every shift, and would try — just a few pages of A4 — and they go to have conversations in a quiet room. The everywhere with the patient. The plans patient seemed to appreciate this. In her contain all sorts of information which will interventions with him the student did not help staff communicate more effectively and really do anything differently to how she should help the individual feel more would treat any patient.
However, the only comfortable. This might be anything from difference was that it took longer. The how someone is able to move or speak to patient, in his distress, would often stutter what makes them stressed or the kind of over words, and repeat himself, requiring food and drink they prefer. Conversely, it is important that clinicians Many people with learning disabilities will have some and carers have realistic expectations of individuals, kind of document, often referred to as a passport or thereby avoiding unnecessary feelings of failure and low personal profile, detailing their abilities and their health self-esteem.
This is often own decisions associated with environmental issues like noise levels, or boredom and communication difficulties such as other people not understanding the individual. Preparation is Experiences of people with learning the key to promoting dignity in these situations. Ensure you adopt a My nurse gave me a leaflet I was at the doctors and non-judgemental attitude, stay calm, do not to raise your about the medication. The he started to write a voice and never reprimand the individual for their leaflet was easy to read.
It prescription. It is crucial that you try to understand the used words that I knew. It told me what the reasons behind their behaviour. He helped. I remember that their views may be very different to that told the doctor that I of the individual. Some individuals have very particular understand. For example, the person may like their Getting it right for people with belongings placed in a certain position and become learning disabilities agitated if they are moved.
Taking time to get to know someone and facilitate their likes and dislikes as much The choices we make define who we are. People with as is possible will be mutually beneficial to both the learning disabilities have often had been denied a diverse individual and the service, as it will reduce any anxieties range of choices, from small day-to-day to significant about future interventions. Empowering people contributes to an enhanced dignified experience of health care.
Some people may have high support needs, and may not communicate verbally.
How are the lives of people with disabilities affected?
In these situations it will be necessary to use alternative methods of communication, such as signs and symbols. Personal over their lives, health and wellbeing. Once health needs health budgets have been welcomed by people with have been identified, an individual with their local learning disabilities, carers and services, especially in health team will develop a care plan and a budget will be light of their increased health needs and the continuing allocated to the individual to implement their care plan. The in relation to chronic kidney disease CKD project provides specifically designed care.
An educational package was specifically menus, ensuring that people with learning developed for people with learning disabilities have the same range of choices disabilities.
Passport to Health | Intellectual Disability and Health
An accessible information group as other patients. Information is presented in advised on presentation and accessibility. In North Wales NHS Trust a Health Liaison The project has supported people with Service for adults with learning disabilities learning disabilities to understand treatment co-developed a DVD for service users about options, ensuring that individuals can make accessing GP surgeries.
It also highlighted informed choices. The DVD was jointly developed with service users, Pacesetters is a partnership between local as the nursing team wanted local people to communities that experience health own it and it has proved to be a great success inequalities, the NHS and the Department of since its launch in August Signposting Office of the Public Guardian — supports and Best interests: guidance on determining the best promotes decision-making for those who lack capacity interests of adults who lack the capacity to make a or would like to plan for their future within the decision or decisions for themselves — available at framework of the Mental Capacity Act — see www.
The nurses patient was screaming. They Nobody did anything, I Clinicians should devise proactive plans that aim to treated me with respect. As well as managing risk, emphasis should be placed on developing a sense of safety and security for the person. The The nurses restrained a Factors that may contribute to people with learning nurses let me have the patient in front of me. Clinicians the lounge. It was should consider the following with this group: frightening. The hospital paid for frightened. Tell us what is In some circumstances frequent observation of the happening, like when you turn the lights out.
This can the use of restraint staff should provide opportunities result in the person feeling ill at ease and unsafe. Individual care plans should address issues of safety in collaboration with the person, thereby promoting a dignified experience of health care. The factors included were: Voice UK — a national charity supporting people with l supporting people prior to admission learning disabilities who have been victims of abuse or l orientation to the health environment crime.