Dignity in health care for people with learning disabilities

Dignity in health care for peoplewith learning disabilitiesRCN guidance

ContributorsThis booklet was written by Steve Hardy, Training and Consultancy Manager, EstiaCentre, South London and Maudsley NHS Foundation Trust, with support from membersof the RCN Learning Disability Nursing Forum.RCN Learning Disability Nursing ForumJim Blair, Consultant Nurse (Learning Disabilities),St. George’s Healthcare NHS TrustDr Michael Brown, Nurse Consultant, NHS LothianPrimary Care Organisation and Lecturer, School ofCommunity Health, Napier UniversityMandy Dunford, Community Nurse LearningDisabilities, Hounslow Primary Care TrustMichael Gregory, Community Behavioural Nurse,Northern Area Health and Social Services TrustAnn Norman, Professional Nurse Adviser forLearning Disability and Prison Nurses, Royal Collegeof NursingRuth Northway, Professor of Learning DisabilityNursing, University of GlamorganMichelle Persaud, Associate Director of Nursing,Nottinghamshire Health Care NHS Trust, and Chair ofthe RCN Learning Disability ForumSteering GroupSue Carmichael, Valuing People Now Lead on Healthand People with Complex Needs, Department ofHealthJanet Cobb, Associate Consultant, Foundation forPeople with Learning DisabilitiesJo Dwyer, Clinical Specialist Occupational Therapist(mental health in learning disabilities), SouthwarkPrimary Care NHS TrustSarah Halls, Training Officer, Estia Centre, SouthLondon and Maudsley NHS Foundation TrustDr Geraldine Holt, Honorary Senior Lecturer, SouthLondon and Maudsley NHS Foundation Trust, EstiaCentre, Kings College London, and the Institute ofPsychiatry, LondonFiona Hind, Physical Healthcare Facilitator,Nottinghamshire Healthcare TrustJennifer Luchoomun, Nursing Student, FlorenceNightingale School of Nursing and Midwifery, King’sCollege London, and Member, Association of NursingStudents Executive Committee, London RegionDebra Moore, Managing Director, Debra MooreAssociatesElizabeth Tysoe, Head of Health Inspection, HMInspectorate of PrisonsExpert PanelPeter CroninPeter DevlinLana DunnetAnne OnwuegbuzieLiam PeytonBarry StennetBeccy SullivanJane WallaceYolanda ZimockRCN Legal DisclaimerThis publication contains information, advice and guidance to help members of the RCN. It is intended for use within the UK but readers are advised thatpractices may vary in each country and outside the UK.The information in this publication has been compiled from professional sources, but its accuracy is not guaranteed. Whilst every effort has been made toensure the RCN provides accurate and expert information and guidance, it is impossible to predict all the circumstances in which it may be used.Accordingly, to the extent permitted by law, the RCN shall not be liable to any person or entity with respect to any loss or damage caused or alleged to becaused directly or indirectly by what is contained in or left out of this information and guidance.Published by the Royal College of Nursing, 20 Cavendish Square, London, W1G 0RN© 2009 Royal College of Nursing. All rights reserved. Other than as permitted by law no part of this publication may be reproduced, stored in a retrievalsystem, or transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise, without prior permission of thePublishers or a licence permitting restricted copying issued by the Copyright Licensing Agency, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Thispublication may not be lent, resold, hired out or otherwise disposed of by ways of trade in any form of binding or cover other than that in which it ispublished, without the prior consent of the Publishers.

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiES1IntroductionThis guidance, developed by the Royal College ofNursing Learning Disability Nursing Forum, aims toimprove dignity in health care for people withlearning disabilities. While designed primarily tosupport the nursing workforce working in all healthcare settings, other health care and social care staffmay also find this publication a useful resource.The guidance concludes with information relating tothe particular health needs that people with learningdisabilities may have, and provides ideas on workingin collaboration with other service providers.The RCN Learning Disability Forum would like tothank everyone involved in the development of thispublication for their time and expertise.A small proactive group of individuals with learningdisabilities who use health care services in South EastLondon agreed to contribute to the development ofthis guide. Referred to as the expert panel, they sharedtheir thoughts, feelings and experiences at three focusgroup meetings. During these events, which werefacilitated by a learning disability nurse, groupmembers were encouraged and supported to discusstheir thoughts in relation to three key questions:l what does dignity mean?l what were their experiences of healthservices?l what could nurses do to make dignity better?The core themes defined by the expert group haveshaped the structure of this document and eachsection presents the reader with:l the experiences of people with learningdisabilities using health care servicespositive experiencesareas for improvement in relation todignitywhat’s needed to improve dignityl getting it right for people with learningdisabilitiespractical ideas on what nurses can do toimprove dignityl signpostingsources of further information andsupport.Return to contents 2

oyal coLLEge of nuRSing2What is dignity?Dignity can be difficult to define, as it is a multifacetedconcept and can be interpreted in manydifferent ways. In our Dignity at the heart of everythingwe do campaign, the RCN offered the followingdefinition:‘Dignity is concerned with how people feel,think and behave in relation to the worth ofvalue of themselves and others. To treatsomeone with dignity is to treat them as abeing of worth, in a way that is respectful ofthem as valued individuals.’RCN, (2008)In care situations dignity may be promoted ordiminished by a number of factors including thephysical environment, organisational culture, theattitudes and behaviours of the nursing team andothers, and the manner in which care activities arecarried out.What does dignity mean to people withlearning disabilities?The expert panel had lengthy discussions when itcame to defining the term ‘dignity’ in relation tohealth care. From these discussions they agreed:“Dignity is being treated as a human being. Itis about being treated as an individual andwith respect.”They went on to deconstruct the term into several keythemes:l understanding my healthl respect mel get to know mel having choices and making decisionsl feeling safe.This guidance has contains material in each of thesecategories to reflect the views of those using healthcare services.When dignity is present people feel in control, valued,confident, comfortable and able to make decisions forthemselves. When dignity is absent people feeldevalued and lacking in control or comfort. They maylack confidence and be unable to make decisions forthemselves. They may feel humiliated, embarrassed orashamed.Dignity applies equally to those who have capacityand those who lack it. Everyone has equal worth as ahuman being and must be treated as if they are able tofeel, think and behave in relation to their own worthor value.The nursing team should therefore treat all people inall settings and of any health status with dignity, anddignified care should continue after death (RCN,2008).Return to contents 3

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiES3Dignity, healthcare and peoplewith learningdisabilitiesDignity has been a pertinent issue in relation toservices for people with learning disabilities for manyyears. In the past a significant number of individualswere placed in long stay institutions which were oftensituated outside of towns and cities. These weregenerally characterised by a lack of dignity, examplesof which include:Placel offered little or no privacyl barren environments, with little or nothingto dol institutions/hospitals often situated milesaway from the person’s community, familyand friendsl little or no access to the outside world;everything that was considered to be neededwas within the institutionPeoplel personal identity was not promoted (wardshad shared clothing and toiletries for allresidents)l little in terms of personal possessionsl language was often stigmatising andundignifiedProcessl inflexible regimes (for example, refreshmentsat set times)l lack of choicel family having to apply in writing to take theirrelative out of the grounds.During the late 1980s hospital closure programmesresulted in people being moved into the community,living independently or in small supported housing.Emphasis was placed on delivering person-centredservices which support individuals to take control oftheir lives.At the turn of the millennium the four UK countriesdeveloped national policies with regards to peoplewith learning disabilities, all of which enshrined theimportance of health care and fair access to servicesfor this group. Each country policy highlighted thespecific health needs of people with learningdisabilities and stipulated that people should be ableto use the same health services as any other citizen,whilst noting that mainstream services neededsupport and training to facilitate this.Despite the plethora of policy relating to people withlearning disabilities, there have been a number ofdamning inditements of individuals’ actualexperiences of using health services. Reports havedescribed poor practice, have been highly critical ofthe way people with learning disabilities have beentreated, and have reflected on the inexcusable deathsof some of society’s most vulnerable individuals inplaces where one would expect them to be safe (DRC2006, Mencap 2007, Michael 2008). Some of thecommonly reported issues are:l discriminationl assumptions being made about individualswith no assessmentl lack of communication with the individualand their carersl difficulty in accessing servicesl staff with a lack of knowledge and skills inlearning disabilitiesl abuse and neglect.All of these factors have a shared outcome for theindividual – an undignified experience of health care.This guidance explores what nurses can do to improvedignity in the health care they provide, highlightingpractical ways of improving dignity for the patientwith learning disabilities. As one member of theexpert panel said:“It’s only a few nurses that give others a badname. We need to remember all the goodthings nurses do for people with learningdisabilities.”Return to contents 4

oyal coLLEge of nuRSingSignpostingDignity: at the heart of everything we do –Royal College of Nursing, www.rcn.org.ukDignity in care campaign – Care ServicesImprovement Partnership,www.dignityincare.org.ukHealthcare for all: independent inquiry into access tohealthcare for people with learning disabilities 2008,www.iahpld.org.ukDeath by indifference – a report by MENCAPdescribing the tragic deaths of six people withlearning disabilities who died in NHS care,www.mencap.org.ukUnderstanding my healthExperiences of people with learning disabilitiesPositive experiencesThe nurse at the surgery gives me informationabout good foods and bad foods. We made a plan ofwhat I should eat. I have lost some weight.Areas for improvement in relation to dignityI hear people with learning disabilities get a bad dealfrom hospitals; I saw it on the news. They need to takebetter care of us.I get anxious at the clinic. They always give me thefirst appointment. It helps keep me calm.What’s needed?It’s like getting health care from a third world country.We are treated like second class citizens.l All nurses and support staff should have training about people with learning disabilities.l We should have regular health checks.l CTPLDs (Community Teams for People with Learning Disabilities) should give other nursesinformation and support.l We should be given information and help about how to stay well, like having a good diet or doingexercise.l If you want to give us medication you should tell us:what it is forwhy we should take ithow it will helpabout the side effectsinformation in a format that is easy to understandhow to take the medication.Return to contents 5

oyal coLLEge of nuRSingExamPLES of good PRacticeStaff at the Sussex Partnership NHS Trustdeveloped a half-day training workshop forstaff working in local acute hospitals andmental health services. The main aims of thetraining were:l to have an understanding of the keyissues of learning disabilitiesl to explore the communication difficultiesthat people with a learning disability canhave, and how to make the best of theml to explore the issues of challengingbehaviour that people with learningdisabilities may have and how toovercome thesel to explore the issues of capacity andconsent with respect to people withlearning disabilities and how best to workwith these issuesl to explore what resources are available tosupport staff and managers in a generalhospital working with people withlearning disabilities.At East Sussex Hospitals NHS Trust eachward has a learning disability link nurse whoreceives training and advice with staff fromthe learning disability service. Each ward isgiven a resource pack, which offers practicaladvice, support and links to furtherinformation. A sensory suitcase is alsoavailable via the equipment library, whichcan be used by staff to develop a calmingatmosphere in their ward. An alert systemhas been developed on the A&E IT system; ifthe name of someone previously identifiedas having challenging needs comes in, thestaff are advised that there are some specialneeds to take into account, and what actionthey can take to support the individual.Jane, a 16 year old girl who has an autisticspectrum condition, attended the daysurgery unit at Crosshouse General Hospitalin Kilmarnock, Scotland for dental treatmentunder general anaesthetic. A previousadmission for a similar procedure that hadnot gone well and in response to concernsexpressed by Jane’s family, a meeting wasset up involving Jane’s parents, theanaesthetist, the community dentist and thenurses involved in Jane’s care. Topicsdiscussed were communication,environment, fear factors, pre-medications,personal items, and music and distractiontherapies. Alternative care plans were agreedupon for varying scenarios that could occuron the day. The actions put into placeincluded:l communication – supported by Jane’sparentsl environment – the admission area wascleared and available only to Jane and herfamily. A room was set up to resembleJane’s bedroom at home, her ownbedding, toys and music were brought inbefore her arrival and the multidisciplinaryteam all wore their ownclothes. Staff were led by the parentsthroughout this, enabling them tomaintain Jane’s dignity withoutcompromising her carel pre-medication – a dose was given toJane before arrival in a juice of her liking.After admission a further dose wasadministered with much support fromJane’s parents. This allowed theanaesthetist to successfully site a venflonand administer an anaesthetic drugwithout any distress to Jane or her parentsl distraction therapies – a snoezeling(specialist sensory equipment) mattresswas used, along with personalisedbedding and toys. Her favourite musicand films were played throughout thepre-operative time.Jane was safely supported onto a theatretrolley whilst still aware, and was able tofollow prompts from her mum without anystress being experienced. Surgery wentahead as planned and an uneventfulrecovery followed. Jane’s parents stayed inReturn to contents 7

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESthe unit throughout and were fully involvedin her pre-operative and post-operative careand decisions.The Basic Personal Care MOT was developedin Nottingham, with the collaboration of theNottingham Carers Forum, in response toparents and carers of adults with a learningdisability becoming increasingly concernedabout the personal care their sons anddaughters were receiving from services.The MOT provides advice and guidance tothose assisting people with learningdisabilities in regards to meeting aspects ofpersonal care with confidence and dignity. Itcontains a summary checklist highlightingthe minimum frequency that tasks should becarried out, and signals the need for furtherassessment and specialist support if aperson is having difficulty with aspects ofpersonal care. The summary checklistprovided within the tool acts as the MOTcertificate and ensures seven key areas areconsidered when planning and delivering anindividuals’ care:l Personal hygienel Oral hygienel Fingernail and hand carel Toe nail and foot carel Shavingl Hair carel ClothingThe MOT tool was launched at a multistakeholderevent that included carers andhealth and social care staff, and has hadgreat success improving dignity for peoplewith learning disabilities. It is now includedin the contract monitoring of supported livingprovision across the county, and has beenhighlighted as an example of good practiceby the valuing people support team.SignpostingGetting it Right!A project developed by several health professionalbodies to help improve healthcare for people withlearning disabilities. See www.mencap.org.uk/gettingitrightEasy HealthProvides a wide range of accessible information onhealth issues for people with learning disabilities. Seewww.easyhealth.org.ukIntellectual Disability Health InformationProvides a wealth of information on the health needsof people with learning disabilities. Seewww.intellectualdisability.infoThe Elfrida SocietyResearches better ways of supporting people withlearning disabilities and provides a wide range ofaccessible information on health issues. Seewww.elfrida.comEpilepsy ActionA nationwide organisation that aims to improve thequality of life and promote the interests of peopleliving with epilepsy. See www.epilepsy.org.ukEstia CentreSpecialises in the mental health needs of people withlearning disabilities. See www.estiacentre.orgMeeting the health needs of people with learningdisabilities – guidance produced by the RCN.Available at www.rcn.org.ukMental health nursing of adults with learningdisabilities – guidance produced by the RCN.Available at www.rcn.org.ukPromoting access to healthcare for people with alearning disability – a guide for frontline NHS staff– guidance produced by NHS Quality ImprovementScotland. Available at www.nhsquality.orgReturn to contents 8

oyal coLLEge of nuRSingRespect meExperiences of people with learning disabilitiesPositive experiencesAreas for improvement in relation to dignityThe district nurse always speaks to me first. She talksto my mum if I cannot answer her questions.When I was in hospital the nurses always helped meclose the curtains when I got dressed.The nurses were very caring. They took time to speakto me. They helped me get better.They treated me the same as everyone else.Nurses need respect as well.What’s needed?l Services should realise that people withlearning disabilities are all different. Weshould be treated as individuals.l If you are an adult, you should be treated asan adult.l Having a learning disability doesn’t mean youare stupid, it just means you might needmore support.l It doesn’t matter what you can do or can’t do,doctors, nurses and care staff need to respecteveryone.Getting it right for people withlearning disabilitiesAsk the individual how they prefer to be addressedand use this term consistently (for example, Mr, Missor by their first name/nickname).When talking to the person always talk to themThe doctor always speaks to my mum. He doesn’treally look at me. He never asks me what is wrong.They sent an appointment letter to my mum insteadof me. I can read and I have my own diary. They treatme like a child.I was in hospital. The doctor came to see me. She hadlots of students with her. She didn’t ask me if Iminded. I was very embarrassed.They stood by my bed and talked about me. No oneasked me what I thought.I made a complaint about a nurse. She was horrible tome. She said I was lying. The other nurses said theydidn’t hear anything, but they were there. They sticktogether. They didn’t respect me.directly and do not ask their carer questions first.With the person’s consent, you may ask the carerquestions.People with learning disabilities have the right toprivacy like everyone else, but they may need supportin putting this into practice (like being shown how tolock the bathroom door, or needing support in closingcurtains).Before entering a room always knock first, even if youknow the person is unable to answer you.Do not use terms that are out of date and will causeoffence, such as mental handicap, mental retardation,mental subnormality.Remember everyone you work with is a ‘person first’.Some individuals may prefer the term ‘learningdifficulties’ instead of ‘learning disabilities’; find outwhat term the person uses.Return to contents 9

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESExamPLES of good PRacticeSHIELD (Sexual Health Innovation Educationfor Learning Disabilities) is a programmedeveloped on the Isle of Wight to givepeople with learning disabilities access tosexual health information and support.Get to know meExperiences of people with learningdisabilitiesPositive experiences Areas for improvementin relation to dignityThe SHIELD Team worked with a largenumber of stakeholders to establish awide-ranging service which offers peoplewith learning disabilities the informationthey need to lead sexual lives, whilerespecting their dignity and human rights.I broke my arm andneeded an operation. Mykeyworker took mypersonal file into theward. It helped thenurses get to know me.Just because I have alearning disability, theythought I couldn’t doanything. They didn’teven ask what I could do.The SHIELD service includes a range ofinitiatives. The SHIELD clinic, in partnershipwith the local sexual health service, givespeople the time to express their needs in away which suits them and information is ina format they can understand. The clinic issupported by a network of more than 60SHIELD ‘links’ – professionals working inorganisations which deal with people withlearning disabilities, such as residentialcare homes, who have undergone aspecially created SHIELD training coursethat includes a section on sexuallyinappropriate behaviour.Service users have access to chlamydiascreening, condoms and information on thelearning disability section on the sexualhealth website, as well as peer training – atwo day sexual health course delivered bypeople with learning disabilities.SignpostingPeople First is an organisation run by and for peoplewith learning difficulties to raise awareness of, andcampaign for the rights of, people with learningdifficulties, and to support self-advocacy groupsacross the country. See www.peoplefirstltd.comValues into Action provides research, training,consultancy, outreach and accessible information. Seewww.viauk.orgWhat’s needed?l Nurses should find out what people can dofor themselves and not do it for them.Getting it right for people withlearning disabilitiesPeople with learning disabilities are a diverse group.Promote dignity by recognising each person as anindividual with a unique personality, history andrange of abilities.Do not make assumptions about the person. You needto take time to establish what their abilities are andwhat they need support for. Ask the person what theycan do for themselves, what support they need andhow they prefer the support to be given.It is important that people with learning disabilitiesdo not feel disempowered. It may be frustrating forthe clinician to watch an individual seeminglystruggle with a task and it may seem easier to do it forthem. It may take the person longer to completecertain tasks but giving them the opportunity to workthrough it themselves will enhance feelings ofself-worth and achievement, thus promoting theirdignity.In the past there have been low expectations of peoplewith learning disabilities which had led to increaseddependency that leads to low levels of achievementReturn to contents 10

oyal coLLEge of nuRSingExamPLES of good PRacticeAnne, a 48-year old woman with Down’ssyndrome and who has dementia, wasadmitted as an inpatient on a ward at St.George’s Hospital in London suffering frompneumonia. Her friend Gwen was worriedthat the nursing and other staff may not beable to support Anne. The staff, with the helpof a community learning disability nurse,found out when filling in a hospital passport(containing important information about theperson such as their likes and dislikes,health difficulties and any medication theymay be on) with Anne that she is frightenedof the dark, so ensured that she had abedside light by her bed at night. They alsodiscovered that she likes Elvis Presley soprior to any procedures, for example bloodpressure monitoring, they would talk to herabout Elvis. By making small personalisedchanges at no financial cost Anne’s quality ofcare and dignity was greatly improved.A nursing student was on placement in anacute mental health setting and a patientwas admitted who had a dual diagnosis oflearning disability and schizophrenia. Thepatient was very distressed at the time ofadmission.The student made a point of spending timewith the patient on every shift, and would tryto have conversations in a quiet room. Thepatient seemed to appreciate this. In herinterventions with him the student did notreally do anything differently to how shewould treat any patient. However, the onlydifference was that it took longer. Thepatient, in his distress, would often stutterover words, and repeat himself, requiringcareful and active listening. The student triedto make it clear that she was listening to him,and valued what he had to say. Over thecourse of a few days working with thepatient, the patient opened up more, whilehis levels of distress were visibly less.Though the student does not claim any partin the patient’s gradual recovery, she feltthat, by taking extra time to listen to him andhis concerns, she helped to create anenvironment where he could expresshimself.Support for Living in West London has beenrunning a project called Treat Me Right,which has collaborated with people usingservices, carers, advocacy groups andhospital staff. The project is designed toimprove patient care for people with learningdisabilities at Ealing Hospital. One of thecrucial messages to come out of thediscussions was that every individual with alearning disability is very different, and a waywas needed to communicate this to all thehospital staff encountered by the patientwhile they were in hospital. To deal with thisissue they have developed About Me Plans,which have been hugely successful inimproving people’s hospital experience andhave promoted dignity. The plans are short– just a few pages of A4 – and they goeverywhere with the patient. The planscontain all sorts of information which willhelp staff communicate more effectively andshould help the individual feel morecomfortable. This might be anything fromhow someone is able to move or speak towhat makes them stressed or the kind offood and drink they prefer.and self-esteem. Conversely, it is important thatclinicians and carers have realistic expectations ofindividuals, thereby avoiding unnecessary feelings offailure and low self-esteem.Many people with learning disabilities will have somekind of document, often referred to as a passport orpersonal profile, detailing their abilities and theirhealth and support needs; find out if the person hasone.Return to contents 11

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESSome people with learning disabilities may engage inbehaviour that is considered challenging. This is oftenassociated with environmental issues like noise levels,or boredom and communication difficulties such asother people not understanding the individual.Preparation is the key to promoting dignity in thesesituations. Ask the person or their carers if there areany triggers for ‘challenging behaviour’ and try toavoid these or minimise their effects. Respond to any‘challenging’ situation in a dignified manner. Ensureyou adopt a non-judgemental attitude, stay calm, donot to raise your voice and never reprimand theindividual for their behaviour. It is crucial that you tryto understand the reasons behind their behaviour.With the person’s consent, it may be very helpful toseek the advice and opinions of carers but it isimportant to remember that their views may be verydifferent to that of the individual.Discovering a person’s likes and dislikes isfundamental to successful interventions and willenhance the individual’s experience of health careservices. Useful information will include food anddrink preferences, an understanding of keyrelationships and detail of specific personal routines.Some individuals have very particular needs or ritualswhich may not appear as significant to other peoplebut are crucial to the person’s functioning andwellbeing. For example, the person may like theirbelongings placed in a certain position and becomeagitated if they are moved. Taking time to get to knowsomeone and facilitate their likes and dislikes as muchas is possible will be mutually beneficial to both theindividual and the service, as it will reduce anyanxieties about future interventions.Having choices and making myown decisionsExperiences of people with learningdisabilitiesPositive experiences Areas for improvementin relation to dignityMy nurse gave me aleaflet about themedication. The leafletwas easy to read. It usedwords that I knew. It alsohad pictures that helped.We read through ittogether and sheanswered my questions.I told the doctor that Iwould take themedication.I was at the doctors andhe started to write aprescription. He hadn’ttold me what theprescription was for. Hedidn’t ask if I wanted thetablets.What’s needed?l We have the right to say yes or no totreatment.l Doctors and nurses should give usinformation to help us make decisions, whichis easy to understand.Getting it right for people withlearning disabilitiesThe choices we make define who we are. People withlearning disabilities have often had been denied adiverse range of choices, from small day-to-day tosignificant health care decisions. Empowering peoplecontributes to an enhanced dignified experience ofhealth care.Some people may have high support needs, and maynot communicate verbally. In these situations it willbe necessary to use alternative methods ofcommunication, such as signs and symbols. Theclinician should also pay particular attention to theindividual’s reactions to different experiences; this willbe beneficial when ascertaining people’s choices orwhat is in their best interests if they are unable tomake the decision themselves.Return to contents 12

oyal coLLEge of nuRSingExamPLES of good PRacticeAt Cardiff and Vale NHS Trust a project wasdeveloped to enable people with learningdisabilities to participate in decision-makingin relation to chronic kidney disease (CKD)care. An educational package was specificallydeveloped for people with learningdisabilities. An accessible information groupadvised on presentation and accessibility.The package covered four key areas:l functions of the kidneyl symptoms related to CKDl treatments availablel symptoms and treatment of renalanaemia.The project has supported people withlearning disabilities to understand treatmentoptions, ensuring that individuals can makeinformed choices.Pacesetters is a partnership between localcommunities that experience healthinequalities, the NHS and the Department ofHealth. The programme involves work with sixstrategic health authorities in England andaims to promote equality with regards to age,disability, ethnicity, gender, religion andsexual orientation. As part of the programmeEast Kent Hospitals University NHSFoundation Trust has developed an ‘easyread menu’ for people with learningdisabilities who are staying in hospital. Theproject provides specifically designedmenus, ensuring that people with learningdisabilities have the same range of choicesas other patients. Information is presented insimple language, uses accompanyingphotographs/pictures and offers signposts tofurther help. The project involved acollaboration between a wide range ofstakeholders including people with learningdisabilities, the voluntary sector, localuniversity and the health care staff.In North Wales NHS Trust a Health LiaisonService for adults with learning disabilitiesco-developed a DVD for service users aboutaccessing gp surgeries. It also highlightedthe importance of annual health checks. TheDVD was jointly developed with service users,as the nursing team wanted local people toown it and it has proved to be a great successsince its launch in August 2008.The team also produced hand held ‘healthaction plans’ for adults with learningdisabilities to enable them to gain controland own their health needs and plan how tomeet these needs.SignpostingBest interests: guidance on determining the bestinterests of adults who lack the capacity to make adecision (or decisions) for themselves – available atwww.estiacentre.orgMaking Decisions Alliance – an alliance of nationaland local disability and older person services thatcampaign for legislation in regards of mental capacity.See www.makingdecisions.org.ukOffice of the Public Guardian – supports andpromotes decision-making for those who lack capacityor would like to plan for their future within theframework of the Mental Capacity Act 2005 – seewww.publicguardian.co.ukReturn to contents 13

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESFeeling safeExperiences of people with learningdisabilitiesPositive experiences Areas for improvementin relation to dignityI was beaten up and Iwent to A&E. The nursesmade me feel safe. Theytreated me with respect.They talked to me nicelyand calmed me down.They said I could havemy own room, because itso was noisy there.I don’t like the dark. Thenurses let me have thebedside light on at night.I was at A&E late atnight. They said I couldgo home, but I didn’t feelsafe. The hospital paidfor a taxi.I was in a ward and apatient was screaming.Nobody did anything, Iwas scared.The nurses restrained apatient in front of me.They shouldn’t do this inthe lounge. It wasfrightening.My boyfriend wassectioned. It wasn’t safein the hospital, he was sofrightened. They didnothing to help him.They left him alone.What’s needed?l Tell us what the routine is. Tell us what ishappening, like when you turn the lights out.l If it’s really noisy, ask if the person would liketo go somewhere quiet.l If you need to restrain someone don’t do it infront of other people.Getting it right for people withlearning disabilitiesAccessing health care services can be an anxietyprovoking experience and this may be furtherexacerbated for people with learning disabilities, astheir understanding of the situation may be limited.This can result in the person feeling ill at ease andunsafe. Individual care plans should address issues ofsafety in collaboration with the person, therebypromoting a dignified experience of health care.All health care staff should be up-to-date and familiarwith local policies and procedures for thesafeguarding of vulnerable adults and children.The safety of the person should always be assessed(especially with regards to hospital admissions). Theremay be a variety of risk issues that need to beconsidered, such as vulnerability, harm to self orothers (deliberate or accidental) and medicationmanagement. Clinicians should devise proactive plansthat aim to minimise risk and promote the person’ssafety. Balancing risk management against theperson’s independence is fundamental to proving asafe and dignified experience.As well as managing risk, emphasis should be placedon developing a sense of safety and security for theperson. Factors that may contribute to people withlearning disabilities feeling safe and secure will beindividual and may vary to those of the widerpopulation. Clinicians should consider the followingwith this group:l routine and predictabilityl orientation to the environment (frequentreminders may be needed), such as toilets,where to get a drinkl somewhere quiet to go if its noisy or chaoticl opportunity to contact family, friends andcarers and support to do this if requiredl regular access to a named professional.In some circumstances frequent observation of theperson may be required. If this is necessaryconsideration should still be given to the person’sdignity, including privacy and avoiding disruption ofactivities.When finding out about an individual’s support needs,especially with regards to their personal care,clinicians should consider what makes the person feelsafe and comfortable, for example, the gender of thecare provider.If individuals witness a disturbing incident (includingthe use of restraint) staff should provide opportunitiesfor people with learning disabilities to be de-briefed.Return to contents 14

oyal coLLEge of nuRSingExamPLES of good PRacticeSheffield Care Trust and Sheffield CityCouncil developed a benchmarking tool topromote the safety of people with learningdisabilities in acute mental health andgeneral hospital settings. The factorsincluded were:l supporting people prior to admissionl orientation to the health environmentl assessment of risk of individuals withmental health needsl balancing observations and privacy ina safe environmentl meeting the individual’s safety needsl a positive culture to learn fromcomplaints and adverse incidentsrelated to harm and abuse.The tool provides general indicators of bestpractice and additional indicators for theindividual’s care plan, based around theactivities of daily living, and concludes withan action plan for the service to complete.The Metropolitan Police Service hasdeveloped an easy guide to staying safe forpeople with learning disabilities which, whilenot directly aimed at health care, providesvaluable information that nurses can use aspart of care plans and discharge plans,especially for those who are particularlyvulnerable (Metropolitan Police, 2001). Theguide covers staying safe:l at homel when you go outl travelling on buses and trainsl using taxis and minicabsl what to do if there is real trouble.SignpostingAnn Craft Trust – works with staff in the statutory,independent and voluntary sectors to protect peoplewith learning disabilities who may be at risk fromabuse. See www.anncrafttrust.orginforming, supporting and influencing the healthsector. See www.npsa.nhs.ukRespond – provides a range of service to victims andperpetrators of sexual abuse who have learningdisabilities. See www.respond.org.ukVoice UK – a national charity supporting people withlearning disabilities who have been victims of abuseor crime. See www.voiceuk.org.ukCommunicating with meExperiences of people with learningdisabilitiesPositive experiences Areas for improvementin relation to dignityMy key worker gave thenurses a list of how Icommunicate. It reallyhelped them talk to me.I was in hospital andthey gave me a leafletabout PALS. It was forpeople with learningdisabilities. It was verygood.What’s needed?I was in the waitingroom. I sat there for ageswaiting for my turn.No-one told me that thesign says when it’s yourturn. I’m no good withwords.They use words that Idon’t understand. Noteverybody is a nurse ordoctor.l Find out how we communicate.l Talk to us like adults.l Don’t talk to us like we are stupid.l Nurses need to change the way theycommunicate, we don’t have to change.l Use everyday words, not jargon.National Patient Safety Agency – the NPSA leadsand contributes to improved, safe patient care byReturn to contents 15

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESGetting it right for people withlearning disabilitiesEffective health care provision is dependent on goodcommunication between all stakeholders, and leads toan inclusive and dignified experience. Many peoplewith learning disabilities will have significantcommunication needs. It is essential that cliniciansadapt their service delivery to accommodate this. Thisincludes implementing larger organisational changes,such as providing a range of accessible information, topreparing appropriately for one-on-one interactions.Improving communication with people with learningdisabilities should always be considered on anindividual basis and carers can provide support withthis. A number of general points that clinicians’should consider, include:l use simple everyday languagel before meeting the person try to think ofeasier ways of saying a word, for exampleusing ‘sad’ instead of ‘depressed’l when introducing fresh information tosomeone use no more than two newinformation-carrying words in a sentenceand provide an explanation, perhaps usingalternative methods, to support thisl consider the use of photographs, pictures andsymbols to support communicationl check if the person has had a speech andlanguage therapy assessment, and if there areany recommendations that have arisen fromitl avoid abstract words or concepts and useconcrete terms where ever possible.ExamPLES of good PRacticeIn collaboration with service user groupsand with advice from speech and languagetherapy, South London and Maudsley NHSFoundation Trust developed 29 differentleaflets on mental health and associatedissues for people with learning disabilities.The leaflets covers areas such as:l what is mental health and mental healthproblems?l the common mental health problemsl mental health assessmentl the care programme approach (CAP)l the role of various mental healthl professionals and servicesl Mental Health Act.Local service users developed a DVDexplaining what mental health means tothem, the support they need, and what theyexpect from health and social care staff.DVDs were also developed highlightingwhat happens when a person sees a doctor,nurse or psychologist.SignpostingEasy Info provides a wide range of advice on makinginformation accessible to people with learningdisabilities. See www.easyinfo.org.ukMakaton is a signing vocabulary often used withpeople who have learning disabilities. Learning somecommon signs would be very helpful. Seewww.makaton.orgChange provides a picture bank, commonly used forpeople with learning disabilities, which includes aspecific bank on health issues. Seewww.changepeople.co.ukReturn to contents 16

oyal coLLEge of nuRSing4The health needsof people withlearningdisabilitiesPeople with learning disabilities may develop thesame health problems as any other person. There aresome health problems that they may be morevulnerable to:l Cancer – people with learning disabilities are atgreater risk of developing gastrointestinal cancers,specifically oesophageal, stomach and gall bladder.l Coronary heart disease – individuals with learningdisabilities are more likely to develophypertension, obesity and not partake in exercise,all of which increase the risk of ischaemic heartdisease. People with Down’s syndrome are atgreater risk of congenital heart problems.l Dental issues – poor diet and poor dental hygienehave often been reported in people with learningdisabilities, which may explain increased rates oftooth decay, gum disease and tooth extraction.Dental interventions cause anxiety for manypeople, but for people with learning disabilitieswho may not fully understand what is happeningor what is required of them, it maybe even moreso, and may lead to changes in behaviour. Dentalpractitioners need to work in partnership with thepatient and their carers to reduce any barriers totreatment.l Diabetes – people with learning disabilities are athigher risk of developing diabetes than the widerpopulation.l Epilepsy – approximately one-third of people withlearning disabilities have epilepsy, and the rateincreases in people with higher support needs.They are more likely to have more than one type ofseizures, have complex seizure patterns and bedifficult to manage. Status epilepticus is also morecommon and carers/staff need to be fully aware ofthe individual’s treatment plan should thissituation arise.l Gastro-intestinal problems – people with learningdisabilities, especially those who live or have livedin large communal settings, are at risk ofcontracting helicobacter pylori which may causepeptic ulcers and is a predisposing factor to gastriccarcinoma.l Mental health problems – due to a range ofbiological, psychological and social factors, peoplewith learning disabilities are vulnerable todeveloping mental health problems. The full rangeof mental health problems can occur; in particularschizophrenia has three times the averageprevalence.l Weight problems – levels of obesity are higher,especially in women and those with milderlearning disabilities. Some genetic conditions arelinked to obesity, especially Down’s syndrome andPrader-Willi syndrome. Some people with highersupport needs or those with metabolic disorderssuch as phenylketonuria are at risk of beingunderweight. Some individuals may be onmedication where an increase in appetite is a sideeffect.l Respiratory disease – this is the main cause ofdeath in people with learning disabilities. Theymaybe at risk of respiratory track infectionscaused by aspiration or reflux if they haveswallowing difficulties. People with Down’ssyndrome are at particular risk, as are people withtuberous sclerosis.l Sensory problems – both sight and hearingproblems are far more common in people withlearning disabilities and they need support toaccess regular examinations.l Swallowing and eating problems – problems withswallowing are common, especially among thosewith high support needs. Swallowing problems canlead to choking, secondary infections and weightloss. Some people may have a percutaneousendoscopic gastrostomy (PEG) to ensure adequatenutrition.l Thyroid disease – hypothyroidism is morecommon among people with learning disabilitiesand is particularly associated with Turner’ssyndrome and Down’s syndrome.(Adapted from Hardy et al., 2006)Return to contents 17

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESThe following practical ideas will help you improveyour knowledge, skills and health care delivery topeople with learning disabilities.l Most areas will have a self-advocacy group forpeople with learning disabilities. Ask them to giveyour team a teaching session or if they haveproduced any learning materials. Social serviceswill know of any local groups.l Contact your local school of nursing; ask them ifthey cover health needs of people with learningdisabilities on their courses and if not, why not!l Most areas have a community team for peoplewith learning disabilities (CTPLD) which employsa range of specialists, including learning disabilitynurses. Find out if they have any information tooffer your service or could perhaps run a teachingsession. Contact your local primary care trust orsocial services to locate your local CTPLD.l Ensure there is information about people withlearning disabilities included in every localinduction.l Contact your organisation’s training department;ask if people with learning disabilities are includedin the corporate induction programme, if not, askwhy not!l Identify a nurse in your team to be the formal linkto the local CTPLD and ask for a reciprocalarrangement with a learning disability nurse.Return to contents 18

oyal coLLEge of nuRSing5ResourcesNational policies on learning disabilitiesNorthern IrelandEqual lives: review of policy and services for peoplewith a learning disability in Northern Ireland (2005),see www.rmhldni.gov.ukWalesFulfilling the promises: what future services will looklike for people with learning disabilities in Wales(2001), see www.wales.gov.ukScotlandThe same as you? A review of services for people withlearning disabilities (2000), see www.scotland.gov.ukEnglandValuing people now: a new three-year strategy forpeople with learning disabilities (2009), seewww.dh.gov.uk and the valuing people website atwww.valuingpeople.gov.ukLaw on consent to treatmentNorthern Ireland: Guidance on consent to treatment(2003), see www.dhsspsni.gov.ukScotland: Adults with Incapacity (Scotland) Act 2000,see www.scotland.gov.ukEngland and Wales: Mental Capacity Act 2005, seewww.publicguardian.gov.ukNetworksA2A Access to Acute NetworkFormed in 1998, the A2A network has expanded tobecome a national network for people who supportpeople with a learning disability when they are in ageneral hospital as an outpatient or on admission(emergency or elected). Membership is open toanyone who has an interest in this area of work andcan be accessed through www.nnld.org.uk/a2aHealth Facilitation Network (Learning Disabilities)A network created to share information, resources andgood practice in order to improve the process ofhealth facilitation for people with learning difficultiesand on any issues related to the identification andtraining of health facilitators and health actionplanning. Contact: mark.bradley@oxleas.nhs.ukMental Health in Learning Disabilities Network(MHiLDN)A free-to-join email network for anyone interested inthe mental health needs of people with learningdisabilities. Details of the network can be accessed atwww.estiacentre.orgUK Health and Learning Disabilities NetworkA free-to-join email network for anyone with aninterest in the health needs of people with learningdisabilities. To subscribe, visitwww.ldhealthnetwork.org.ukUseful national organisationsBritish Institute of Learning Disabilities (BILD)Campion House, Green Street, Kidderminster,Worcestershire, DY10 1JLTel: 01562 723010www.bild.org.ukBILD provides research and training on a wide rangeof issues affecting people with learning disabilities andhas a range of free leaflets to download andpublications/training materials to purchase.Foundation for People with Learning Disabilities9th Floor, Sea Containers House, 20 Upper Ground,London SE1 9QBTel: 020 7803 1100www.learningdisabilities.org.ukPromotes the rights, quality of life and opportunitiesfor people with learning disabilities through research,development and influencing policy. Free resourcesare available for download from the Foundation’swebsite.Mencap123 Golden Lane, London, EC1Y 0RTTel: 020 7454 0454www.mencap.org.ukA national organisation that fights for equal rights andgreater opportunities for people with learning disabilities.Return to contents 19

dignity in HEaLTH caRE for peopLE wiTH LEaRNing disabilitiESNational Autistic Society393 City Road, London, EC1V 1NGTel: 020 7833 2299www.nas.org.ukA national organisation that fights for the rights andinterests of all people with autism, to ensure that theyand their families receive quality services appropriateto their needs. It produces a number of free leafletsand publications/training materials for purchase.Royal National Institute for the Blind (RNIB)105 Judd Street, London, WC1H 9NETel: 020 7388 1266www.rnib.org.ukThe RNIB offers information, support and advice toover two million people with sight problems.Royal National Institute for the Deaf (RNID)19-23 Featherstone Street, London, EC1Y 8SLTel: 0808 808 0123www.rnid.org.ukThe RNID offers information, support and advice toover two million people with hearing problems.Other useful websitesChallenging and/or offending behaviourCare and Treatment of Offenders with LearningDisabilitiesProvides information on people with learningdisabilities who have, or are at risk of committingoffences. See www.ldoffenders.co.ukDown’s Syndrome AssociationThis organisation helps people with Down’s syndrometo live full and rewarding lives. It provides a range ofdownloadable information. See www.dsa-uk.comDown’s Syndrome: health issuesOffers advice on the specific health needs of peoplewith Down’s syndrome. See www.ds-health.comDown’s Syndrome ScotlandProvides information about the condition, with adviceand guidance for individuals affected, their familiesand carers. See www.dsscotland.org.ukFragile X SocietyProvides advice and information about the needs ofpeople with Fragile X syndrome. Seewww.fragilex.org.ukPrader-Willi Association (UK)Offers advice, support and information on Prader-Willi syndrome. See www.pwsa.co.ukTuberous Sclerosis AssociationSupports sufferers, promotes awareness, and seeks thecauses and best possible management of tuberoussclerosis. See www.tuberous-sclerosis.orgTurner Syndrome UKSupport and information to both girls and adultwomen with Turner syndrome, their families andfriends. See www.tss.org.ukChallenging Behaviour FoundationProvides guidance and information on supportingpeople with challenging behaviour, includingdownloaded fact sheets. See www.thecbf.org.ukGenetic syndromesAssert (Angelman’s Syndrome)Offers advice and support for those caring for orsupporting people with Angelman’s Syndrome. Seewww.angelmanuk.orgReturn to contents 20

oyal coLLEge of nuRSing6References andkey publicationsBritish Psychological Society (2000) Learningdisability: definitions and contexts, Leicester: BSP.Department of Health (2001) Valuing people: a newstrategy for learning disability for the 21st century,London: DH.Department of Health (2009) Valuing people now: anew three-year strategy for people with learningdisabilities, London, DH.Department of Health Social Services and PublicSafety (2003) Reference guide to consent toexamination, treatment and care, Belfast: DHSSPS.Department of Health and Social Security (2005)Equal lives: review of policy and services for peoplewith a learning disability in Northern Ireland, Belfast:DHSSPS.Disability Rights Commission (2006) EqualTreatment: Closing the Gap - A formal investigationinto physical health inequalities experienced by peoplewith learning disabilities and/or mental healthproblems. London: DRC.Michael J (2008) Healthcare for all: report of theindependent inquiry into access to healthcare for peoplewith learning disabilities, London: Aldridge Press.NHS Quality Improvement Scotland (2006) Promotingaccess to healthcare for people with a learning disability– a guide for frontline NHS staff (Best practicestatement – February 2006), Edinburgh: NHS QualityImprovement Scotland.Prasher VP and Janicki M (2002) Physical health ofadults with intellectual disability, Oxford: BlackwellPublishing.Royal College of Nursing (2008) Dignity: at the heartof everything we do. www.rcn.org.ukRoyal College of Nursing (2007) Mental health nursingof adults with learning disabilities: RCN guidance,London: RCN.Royal College of Nursing (2006) Meeting the healthneeds of people with learning disabilities: guidance fornursing staff, RCN, London.Scottish Executive (2000) The same as you? A reviewof services for people with learning disabilities,Edinburgh: Scottish Executive.Emerson E, Hatton C, Felce D and Murphy G (2001)Learning disabilities: the fundamental facts, London:Foundation for People with Learning Disabilities.Gates B (2003) Learning disabilities: towards inclusion(4th edition), Edinburgh: Churchill Livingstone.Learning Disability Advisory Group (2001) Fulfillingthe promises: report of the learning disability advisorygroup, Cardiff: National Assembly for Wales.Mencap (2007) Death by indifference: following up theTreat me Right! report, London, Mencap.Metropolitan Police (2001) Stay safe: An easy guide.COI Communications.Return to contents 21

The RCN represents nurses and nursing,promotes excellence in practice and shapeshealth policiesJanuary 2010RCN Onlinewww.rcn.org.ukRCN Directwww.rcn.org.uk/direct0345 772 6100Published by the Royal College of Nursing20 Cavendish SquareLondonW1G 0RN020 7409 3333Publication code 003 553ISBN 978-1-906633-27-1