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A Small-Scale Investigation of Hospital Experiences among People with a Learning Disability on Merseyside: Speaking with Patients and Their Carers

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Title: A Small-Scale Investigation of Hospital Experiences among People with a Learning Disability on Merseyside: Speaking with Patients and Their Carers
Language: English
Authors: Dinsmore, Adam Peter
Source: British Journal of Learning Disabilities. Sep 2012 40(3):201-212.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 11
Publication Date: 2012
Document Type: Journal Articles
Reports - Research
Descriptors: Access to Health Care, Mental Retardation, Negative Attitudes, Hospitals, Learning Disabilities, Semi Structured Interviews, Patients, Foreign Countries, Caregivers
Geographic Terms: United Kingdom (England)
DOI: 10.1111/j.1468-3156.2011.00694.x
ISSN: 1354-4187
Abstract: People with a learning disability face a number of challenges when seeking access to hospital care which are often distinct from those faced by the general population. Numerous statistics indicative of these challenges are represented in the academic literature. Previous research has suggested several reasons for the continued existence of these challenges, including a lack of expertise in the provision of health care to people with learning disabilities and negative attitudes towards this population held by healthcare professionals. As a means of elucidating the hospital experiences of people with learning disabilities on Merseyside, the researcher conducted 13 semi-structured interviews--an analysis of 12 of which are included in this article. Of these 12 interviews, two were conducted with an unaccompanied person with a learning disability, three were conducted with a person with a learning disability alongside their carer, and seven were conducted with the carer or carers of a person with a learning disability. The topics discussed in these semi-structured interviews were determined by the findings of a literature search and pilot interview. Emergent themes within the interview transcripts are discussed and recommendations made for healthcare professionals engaged in the hospital care of people with learning disabilities. It is concluded that people with learning disabilities on Merseyside continue to contest with the same difficulties during hospital experiences as have been identified previously by numerous national and international investigations. (Contains 1 table.)
Abstractor: As Provided
Number of References: 26
Entry Date: 2012
Accession Number: EJ976816
Database: ERIC
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  Value: <anid>AN0079243302;f0401sep.12;2019Jun04.10:58;v2.2.500</anid> <title id="AN0079243302-1">A small-scale investigation of hospital experiences among people with a learning disability on Merseyside: speaking with patients and their carers. </title> <p>Accessible summary: • We did twelve interviews all about the times people with learning disabilities had been to hospital since March 2007. Some of them were with people with learning disabilities and some of them were with the carers of people with learning disabilities.• This article talks about what people told us in the interviews and makes some recommendations to hospital staff which we think would help improve hospital experiences for people with learning disabilities in the future.• This research should be important to people with learning disabilities because people with learning disabilities often have more need to attend hospital than other people, and so it is important that the care they receive is of a good enough standard when they are there. Summary: People with a learning disability face a number of challenges when seeking access to hospital care which are often distinct from those faced by the general population. Numerous statistics indicative of these challenges are represented in the academic literature. Previous research has suggested several reasons for the continued existence of these challenges, including a lack of expertise in the provision of health care to people with learning disabilities and negative attitudes towards this population held by healthcare professionals. As a means of elucidating the hospital experiences of people with learning disabilities on Merseyside, the researcher conducted 13 semi‐structured interviews – an analysis of 12 of which are included in this article. Of these 12 interviews, two were conducted with an unaccompanied person with a learning disability, three were conducted with a person with a learning disability alongside their carer, and seven were conducted with the carer or carers of a person with a learning disability. The topics discussed in these semi‐structured interviews were determined by the findings of a literature search and pilot interview. Emergent themes within the interview transcripts are discussed and recommendations made for healthcare professionals engaged in the hospital care of people with learning disabilities. It is concluded that people with learning disabilities on Merseyside continue to contest with the same difficulties during hospital experiences as have been identified previously by numerous national and international investigations.</p> <p>Keywords: health care; hospital; learning disability; nursing; Fair treatment</p> <p>People with a learning disability face a number of challenges when seeking access to hospital care which are often distinct from those faced by the general population. Numerous statistics indicative of these challenges are represented in the academic literature. People with learning disabilities display worse physical and mental health than the general population on average ([<reflink idref="bib2" id="ref1">2</reflink>]). The life expectancy of people with a learning disability continues to lag behind that of the general population, and there is a strong negative association between severity of learning disability and survival; those with moderate to severe learning disabilities display lower median life expectancies than those with mild learning disabilities ([<reflink idref="bib4" id="ref2">4</reflink>]).</p> <p>These health inequalities between people with learning disabilities and the general population are exacerbated by disproportionately low levels of access to health care by people with learning disabilities ([<reflink idref="bib16" id="ref3">16</reflink>]). Some research has suggested that these inequalities arise because of a lack of expertise in the provision of health care to people with learning disabilities ([<reflink idref="bib13" id="ref4">13</reflink>]) and negative attitudes towards this population held by healthcare professionals ([<reflink idref="bib14" id="ref5">14</reflink>]; [<reflink idref="bib17" id="ref6">17</reflink>]).The latter finding is especially worrying when one considers that people with learning disabilities sometimes lack the communicative abilities to readily articulate their needs to healthcare professionals ([<reflink idref="bib3" id="ref7">3</reflink>]). Ways of optimising the ability of people with learning disabilities to articulate healthcare needs during hospital stays have been proposed and implemented in many hospitals including the provision of health information in accessible 'easy read' formats ([<reflink idref="bib18" id="ref8">18</reflink>]) and the formulation of practical tools such as health action plans and patient passports ([<reflink idref="bib7" id="ref9">7</reflink>]).</p> <p>The Disability Rights Commission's exhaustive 2006 report of their investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems points out that healthcare professionals can sometimes mistake genuine symptoms of ill health presented by people with learning disabilities for a facet of the sufferer's disability, coining the phrase 'diagnostic overshadowing' to describe such occurrences. Diagnostic overshadowing can thereby cause the ill health of people with learning disabilities to receive insufficient medical attention.</p> <p>Despite these difficulties, life expectancy of people with learning disabilities is projected to increase significantly between 2011 and 2021 ([<reflink idref="bib10" id="ref10">10</reflink>]). This increase will likely result in greater levels of hospital attendance and dependence on healthcare services on the part of people with learning disabilities over the next 10 years. Observed increases in life expectancy for people with learning disabilities in previous decades provide cause for optimism that positive change in medical interventions and the attitudes of health professionals are both worthwhile and achievable ([<reflink idref="bib15" id="ref11">15</reflink>]). [<reflink idref="bib26" id="ref12">26</reflink>] investigation has shown that people with learning disabilities can be empowered to understand and express information about their own and other's health problems more effectively when given appropriate support.</p> <p>In 2009, the Department of Health published the government white paper Valuing People Now, 'a new 3‐year strategy for people with learning disabilities.' An update of 2001s Valuing People white paper, Valuing People Now describes ways in which the government plan to deliver improved health care for people with learning disabilities between 2009 and 2012. The Disabilities Discrimination Act 2005 introduced a duty for public bodies, including hospitals, to positively promote disability equality and to introduce 'reasonable adjustments' to the care of people with learning disabilities. The Care Quality Commission's 'Access to Healthcare for People with a Learning Disability' performance indicator, not included in the scored assessment of hospitals for 2009/10, will in future assess hospitals on the extent to which they have implemented protocols and measures to ensure equal access to health care for people with learning disabilities. The measures detailed in this performance indicator are a direct response to Sir Jonathan Michael's independent enquiry into access to health care for people with a learning disability 'Healthcare for All' ([<reflink idref="bib6" id="ref13">6</reflink>]). This enquiry was established following the publication of the Royal Mencap Society's 'Death By Indifference' report, published in March 2007.</p> <p>'Death By Indifference' comprises a collection of case studies detailing the hospital experiences of six deceased NHS patients with learning disabilities. In the report, Royal Mencap states their belief that each of these deaths was avoidable and that the underlying cause of each death was institutional discrimination against people with a learning disability within the NHS. One of Royal Mencap's main contentions is that the hospital care of people with learning disabilities is improved when healthcare professionals listen to the opinions of families and carers concerning their disabled loved one's health, and that currently this is typically not done sufficiently by healthcare professionals employed by the NHS. [<reflink idref="bib11" id="ref14">11</reflink>] investigation showed that listening to the testimony of carers is an effective way of detecting pain in hospital patients with learning disabilities.</p> <p>The aim of this investigation was to evaluate the general hospital experiences of people with a learning disability at NHS hospitals on Merseyside since the release of Royal Mencap's 'Death By Indifference' publication in March 2007. The researcher was interested to discover whether the issues discussed by 'Death By Indifference' and other recent publications were still evident in accounts of the hospital experiences of people with learning disabilities on Merseyside. The researcher hoped to gain a better understanding of matters of importance for hospital patients with learning disabilities on Merseyside and ways in which they believe their future hospital experiences could be improved. There appears not to have been an independent investigation of this type conducted on Merseyside previously. This investigation is an adaptation of [<reflink idref="bib12" id="ref15">12</reflink>] investigation into the experiences of general hospital admission for adults with a learning disability in the Nottingham area published in the Journal of Clinical Nursing.</p> <hd id="AN0079243302-2">Methodology</hd> <p>This was a qualitative study undertaken with the aim of generating recommendations for enhancements to the provision of hospital care to people with a learning disability in the Merseyside area. Participants were solicited using a purposive sampling method via the existing membership of Mencap Liverpool, day care centres in the Merseyside area and other local learning disability charities.</p> <p>Those eligible for participation were people with a learning disability who had had hospital experiences on Merseyside since March 2007, or carers of a person with a learning disability who had had hospital experiences on Merseyside since March 2007.</p> <p>Participants were asked to take part in a semi‐structured interview lasting approximately 1 h. In cases where the person's impairment was such that they were unable to participate in the semi‐structured interview, their carers were asked to participate either alongside or on behalf of the person with a learning disability. The subject of the interview was the recent hospital experiences of the person with a learning disability being interviewed. In those cases where carers participated on behalf of a person with a learning disability, the subject of the interview was the recent hospital experiences of the person with a learning disability for whom the interviewee was a carer.</p> <p>The interview consisted of a preliminary 'tell your story' stage before the discussion of nine specific 'core topics'. Participants were invited to speak for as long as they wished about their hospital experiences on Merseyside since March 2007; though, they were encouraged to refer to older experiences if they deemed them relevant to their account. The topics discussed in these semi‐structured interviews were largely determined by the findings of a literature search. A trial interview with a person with a learning disability was undertaken to ensure that the semi‐structured interview was of sufficient scope and accessibility. The nine 'core topics' identified from the literature review and trial interview were as follows:</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> Communication, including the provision of relevant easy read information by hospital staff and the use of patient passports ([<reflink idref="bib1" id="ref16">1</reflink>]; [<reflink idref="bib3" id="ref17">3</reflink>]; [<reflink idref="bib6" id="ref18">6</reflink>], [<reflink idref="bib7" id="ref19">7</reflink>]; [<reflink idref="bib9" id="ref20">9</reflink>]; [<reflink idref="bib18" id="ref21">18</reflink>]; [<reflink idref="bib20" id="ref22">20</reflink>], [<reflink idref="bib21" id="ref23">21</reflink>]; [<reflink idref="bib22" id="ref24">22</reflink>]; [<reflink idref="bib25" id="ref25">25</reflink>]; [<reflink idref="bib26" id="ref26">26</reflink>])</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> Diagnostic Overshadowing ([<reflink idref="bib9" id="ref27">9</reflink>]; [<reflink idref="bib22" id="ref28">22</reflink>])</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> Annual Health Checks ([<reflink idref="bib7" id="ref29">7</reflink>]; [<reflink idref="bib9" id="ref30">9</reflink>]; [<reflink idref="bib23" id="ref31">23</reflink>])</item> <p></p> </ulist> <p>• 4</p> <p></p> <ulist> <item> Medication ([<reflink idref="bib9" id="ref32">9</reflink>])</item> <p></p> </ulist> <p>• 5</p> <p></p> <ulist> <item> Recording of Learning Disabilities on Patient Records ([<reflink idref="bib1" id="ref33">1</reflink>]; [<reflink idref="bib7" id="ref34">7</reflink>]; [<reflink idref="bib9" id="ref35">9</reflink>]; [<reflink idref="bib20" id="ref36">20</reflink>])</item> <p></p> </ulist> <p>• 6</p> <p></p> <ulist> <item> Transition between child and adult health care ([<reflink idref="bib9" id="ref37">9</reflink>]; [<reflink idref="bib25" id="ref38">25</reflink>])</item> <p></p> </ulist> <p>• 7</p> <p></p> <ulist> <item> The involvement of families and carers in the planning and provision of the hospital care of the person with learning disabilities ([<reflink idref="bib6" id="ref39">6</reflink>], [<reflink idref="bib7" id="ref40">7</reflink>]; [<reflink idref="bib11" id="ref41">11</reflink>]; [<reflink idref="bib14" id="ref42">14</reflink>]; [<reflink idref="bib20" id="ref43">20</reflink>]; [<reflink idref="bib25" id="ref44">25</reflink>])</item> <p></p> </ulist> <p>• 8</p> <p></p> <ulist> <item> Food and feeding, including provisions made for particular dietary needs ([<reflink idref="bib7" id="ref45">7</reflink>]; [<reflink idref="bib25" id="ref46">25</reflink>])</item> <p></p> </ulist> <p>• 9</p> <p></p> <ulist> <item> Leaving hospital ([<reflink idref="bib9" id="ref47">9</reflink>])</item> </ulist> <p>At the conclusion of each interview, participants were asked to state a specific recommendation for healthcare professionals which they felt would enhance the care of people with a learning disability in hospitals on Merseyside.</p> <p>Thirteen interviews were conducted in all: two involved people with a learning disability without support, three involved people with a learning disability alongside their carers, eight involved carers speaking on behalf of people with a learning disability in their care. The interviews were audio‐recorded, transcribed and analysed in accordance with [<reflink idref="bib5" id="ref48">5</reflink>] guide to thematic analysis published in the journal of Qualitative Research in Psychology (2006). A combination of 'inductive' and 'theoretical' analysis was used to identify semantic themes in the data yielded from the semi‐structured interviews. One interview was discounted from the analysis because of the poor quality of its audio record; ergo, the analysed dataset comprised twelve interviews. Details of the participants of the twelve analysed interviews are presented in Table 1.</p> <p>1  Participant details</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Participant number</th><th>Age of person with a learning disability</th><th>Type of interview</th><th>Nature of learning disability<sup>a</sup></th><th>Recency of hospital experience<sup>b,c</sup></th><th>Placement within hospital<sup>c</sup></th><th>Reason for attending hospital<sup>c</sup></th></tr></thead><tbody valign="top"><tr><td> 1</td><td>27</td><td>PWLD</td><td>Dyslexia, Dyspraxia, Dyscalculia</td><td>Ongoing; 2 months</td><td>Ophthalmology dept; A&E</td><td>Ongoing eye complaints; injured wrist after fall</td></tr><tr><td> 2</td><td>39</td><td>Carer</td><td>'Mental age of 5 or 6'</td><td>9 months</td><td>Observation ward, rehab ward</td><td>Broken ankle</td></tr><tr><td> 3</td><td>46</td><td>PWLD & Carer</td><td>No formal diagnosis</td><td>Ongoing</td><td>Dialysis ward</td><td>Dialysis, kidney failure</td></tr><tr><td> 4</td><td>48</td><td>PWLD & Carer</td><td>Williamson Syndrome</td><td>Ongoing outpatient</td><td>Diabetes clinic</td><td>Routine diabetes checks</td></tr><tr><td> 5</td><td>25</td><td>Carer</td><td>Asperger's Syndrome, Schizophrenia</td><td>Ongoing outpatient; 2 years</td><td>Neurological dept; haematological ward</td><td>Seizure condition epilepsy; blood disorder</td></tr><tr><td> 6</td><td>41</td><td>Carer</td><td>Idiosyncratic</td><td>18 months; 4 months</td><td>Dental dept; medical assessment unit</td><td>Dental operation; weight loss, unusual behaviour</td></tr><tr><td> 7</td><td>8</td><td>Carer</td><td>Autism, ADHD, SLD</td><td>Ongoing</td><td>Neurological dept.</td><td>Medical reviews</td></tr><tr><td> 8</td><td>48</td><td>Carer</td><td>Idiosyncratic</td><td>1 month</td><td>Spinal injuries ward</td><td>Broken neck</td></tr><tr><td> 9</td><td>51</td><td>PWLD & Carer</td><td>Idiosyncratic</td><td>2 years</td><td>Isolation ward, assessment unit</td><td>Collapse, C. diff</td></tr><tr><td>10</td><td>13</td><td>Carer</td><td>Profound, cerebral Palsy, no speech</td><td>Ongoing</td><td>Neurological dept; surgical ward</td><td>Epilepsy; orthopaedic Surgery</td></tr><tr><td>11</td><td>38</td><td>PWLD</td><td>No formal diagnosis</td><td>Ongoing outpatient; 6 months; 18 months</td><td>Neurological dept; observation ward</td><td>Epilepsy; epileptic seizure</td></tr><tr><td>12</td><td>35</td><td>Carer</td><td>Severe, 'mental age of 18 months,' no speech</td><td>'a few weeks'</td><td>A&E, surgical assessment ward</td><td>Kidney haemorrhage</td></tr></tbody></table> </ephtml> </p> <p>1 <sups>a</sups>Nature of learning disability' is reported as it was stated by the participant.</p> <ulist> <item>2 <sups>b</sups>Recency of hospital experience' is reported as it was on the day of the interview.</item> <item>3 <sups>c</sups>Information referring to separate hospital visits is separated by a semicolon (;).</item> </ulist> <p>Each participant was required to sign a form granting their consent to take part in the investigation. In cases where the impairment of the person with a learning disability was such that they were not able to consent to participate in the investigation, a Best Interests decision was made by somebody caring for them for reasons other than remuneration, in accordance with items 30–34 of chapter 9 of the Mental Capacity Act 2005. All Best Interests decisions were recorded in writing. Participants were informed of their right to withdraw from the investigation without explanation at any point. Participants were assured that their participation would be completely anonymous and confidential and that it was the responsibility of the researcher to ensure their confidentiality and anonymity was maintained. All participants were provided with contact details of Mencap Liverpool's offices and told that they could use these details to contact Mencap Liverpool's outreach co‐ordinator if they later required support because of any distress caused by any element of the investigation.</p> <hd id="AN0079243302-3">Findings</hd> <p>The length of the interviews ranged from 36 to 132 min with an average length of 69 min. Eleven of the interviews were conducted at the home of the participant, and one interview was conducted at a quiet public place mutually agreed upon by the participant and researcher. A thematic analysis of the interview data identified 11 primary themes. These were as follows:</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> Visibility of specialist learning disability nursing roles</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> Lack of awareness of provision of Annual Health Checks</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> Placement of patients within hospital</item> <p></p> </ulist> <p>• 4</p> <p></p> <ulist> <item> Involvement of families and carers in the planning and provision of hospital care for people with learning disabilities</item> <p></p> </ulist> <p>• 5</p> <p></p> <ulist> <item> Responsibilities of patient after having left hospital</item> <p></p> </ulist> <p>• 6</p> <p></p> <ulist> <item> Provision of medication by nursing staff</item> <p></p> </ulist> <p>• 7</p> <p></p> <ulist> <item> Accessibility of complaints process</item> <p></p> </ulist> <p>• 8</p> <p></p> <ulist> <item> Provision of accessible 'Easy Read' information about conditions, treatments and relevant legislation</item> <p></p> </ulist> <p>• 9</p> <p></p> <ulist> <item> Lack of awareness of patient passports</item> <p></p> </ulist> <p>• 10</p> <p></p> <ulist> <item> Flexibility of healthcare routines</item> <p></p> </ulist> <p>• 11</p> <p></p> <ulist> <item> Perceived staff attitudes</item> </ulist> <p>These themes and their implications for practice are discussed below alongside supporting quotes from the relevant interviews where appropriate. Wherever the names of individuals appear, they have been altered to protect the anonymity of the participant. The researcher's recommendations for healthcare staff based on these findings are presented as a list at the end of this article for ease of reference. The researcher makes 11 recommendations in all.</p> <hd id="AN0079243302-4">Visibility of specialist learning disability nursing roles</hd> <p>Participants consistently expressed a desire to see hospitals establish the employment of staff able to provide both themselves and nursing staff with specialist knowledge and support particular to the hospital care of people with learning disabilities. None of the participants were aware of anybody currently fulfilling this kind of role in any hospital on Merseyside.</p> <p>Well I think they should have say, a nurse who understands people with learning disabilities and has dealt with people with learning disabilities you know? I suppose it's hard, but you know the nurses didn't understand Luke's disability. – Participant 9</p> <p>There should be somebody within the hospital responsible for when people go in with learning disabilities that alert staff to what their needs are, what their rights are, and to check up while that person is in hospital to make sure that their needs and rights are being met. – Participant 6</p> <hd id="AN0079243302-5">Lack of awareness of provision of annual health checks</hd> <p>Although only one participant expressed an interest in being registered for an annual health check as a matter of urgency and three participants stated that they believed the amount of contact they already have with healthcare professionals would render such a health check unnecessary, it was disappointing to find that only one participant was aware of whether their GP offered annual health checks to people with a learning disability as a routine service.</p> <p>No I've heard nothing at all... Peter doesn't go regular to the doctors so he doesn't see anyone. He's never had his blood pressure done at the doctors or anything. – Participant 2</p> <hd id="AN0079243302-6">Placement of patients within hospital</hd> <p>Eight participants articulated dissatisfaction with the ways in which they were placed within the hospital during extended hospital stays. The majority of participants expressed a preference for being placed on wards alongside other hospital patients as opposed to being placed in private rooms or side wards. Several reasons were given for this preference. Participant 11 became extremely frustrated by boredom when confined to a private room following a week‐long hospital stay. Participant 12 was disappointed that her foster daughter was unable to 'people watch' during her hospital stay because of her placement within a private side ward. Participant 12 also expressed a belief that her foster daughter was placed in this way because of her appearance, which she felt hospital staff may have worried would frighten other patients. Four of the carers taking part in the investigation expressed a worry that placement in private side wards exposed their loved ones to a risk of neglect and took comfort from their being placed on a ward alongside other patients who could look out for them.</p> <p>I had to stay in this room by myself, had no‐one to talk to or nothing...I had to sit for the whole week doing bugger all bored off my skull.' – Participant 11</p> <p>She's shut in that room by herself, they might take her in now and then, I don't know, but if she's having seizures they don't know because they're not around. On a six bay unit she's got ladies that look out for her that call the nurse in the night if she's having a seizure or they think she's got problems. – Participant 12</p> <hd id="AN0079243302-7">Involvement of families and carers in the planning and provision of hospital care for people...</hd> <p>All of the carers interviewed expressed a belief that their knowledge of the disability of the person they care for is vital to the effective planning and provision of that person's hospital care. Eleven of the twelve participants felt that this knowledge was seldom solicited for by hospital staff, and that efforts on their part to impart this knowledge to hospital staff were seldom effectively made use of, and often ignored or dismissed.</p> <p>Participants provided numerous examples of cases where the intimate knowledge they held about a person with a learning disability did or could have made a significant positive difference to that person's health or hospital care. Participant 12 told of an incident during which healthcare professionals failed to correctly interpret signs of pain expression in her foster daughter, despite her protestations. After a period of a year, an operation revealed the presence of a hitherto undetected condition, vindicating Participant 12's opinion that her foster daughter had been in considerable pain. Had her knowledge of her foster daughter's methods of expressing pain been solicited for and trusted by hospital staff much of this suffering could have been avoided.</p> <p>Participant 5 described an occasion upon which his autistic son was questioned by a member of hospital staff for signs of 'confusion' as a way of establishing whether any lasting damage had been incurred following a large seizure. Had he not been present to provide corrections and corroborations to the answers given by his son Participant 5 believes his son would have been incorrectly assessed as being 'confused' based on the idiosyncratic answers he had provided to the staff member's questions because of his autism. This would assumedly have exposed Participant 5's son to a risk of inappropriate decisions being made about his treatment. The way in which elements of Participant 5's son's disability were mistaken for a separate medical condition constitutes an example of the 'diagnostic overshadowing' identified and cautioned against by the Joint Committee on Human Rights' 2008 report 'A Life Like Any Other'.</p> <p>Do you know from me first telling them she's in a lot of pain it took a year before she had that operation. Isn't that criminal – a year of being in pain and distressed? And I don't know how she did it...I had her on co‐codamol, codeine and all kinds just trying to keep her calm, quiet, and they kept saying to me 'oh they don't really get pain', more or less saying to me 'you're a liar, you're exaggerating'. – Participant 12</p> <p>Had we not been there serious misunderstandings would've been noted on his behalf...I guess what I would like to see happen is patients and perhaps their families, certainly with learning disability cases, where the patient may not be able to articulate quite as well as they might need them to, I think a lot more credence and respect given to the views and evidence of families even if it's anecdotal evidence. And not just lip service, you know? Not just 'oh yes I've got to now listen to you because you're the family member and I'm going to treat your comments with respect,' but actual pro‐active probing for information from the family, pro‐active probing in terms of things like 'have you ever noticed that these things happen worse when following something like this? – Participant 5</p> <hd id="AN0079243302-8">Responsibilities of patient after leaving hospital</hd> <p>The researcher's questions about whether participants were provided with sufficient information about their responsibilities upon leaving hospital and the conditions under which they should get back in touch with the hospital received mixed responses. Participant 10 presented an account of his being provided with a private consultation with senior hospital staff to clarify a medical treatment he was to help his foster son maintain upon his leaving hospital which he was unfamiliar with. However, this consultation was only made available after Participant 10 had overtly requested it rather than having had it actively offered to him by the hospital.</p> <p>I remember after one episode with a new form of emergency medicine for the epilepsy we were basically given some glass viles of his medication which were very briefly explained by one of the nurses on the ward and then sent home. So we asked for the specialist epilepsy nurses to go over that with us and other members of the family and so we came in for a second appointment a few days later... and yes we found the specialist epilepsy nurses were much better at training and talking through the issues than the ward staff. – Participant 10</p> <p>We weren't told anything at all, nothing, they just give you your medication and that was it. Then we just come out the room didn't we, and came home, nothing. – Participant 9</p> <hd id="AN0079243302-9">Provision of medication by nursing staff</hd> <p>Participant 2 gave an account of her son's 6‐week hospitalisation in summer 2009, initially for a broken ankle, during which her son experienced an increase in the number and regularity of his epileptic fits. Participant 2 attributed this dangerous increase to a failure by nursing staff to ensure that her son's usual prescribed daily medication routine was maintained – citing a failure to provide her son with the correct medication at the times and dosages he was usually given them, and a failure to ensure that this medication was being taken when it was provided. Participant 2 believes that these failures were largely because of the incongruence of her son's prescribed daily medication routine with the general medication routine of the ward in which he was placed. Participant 2 described her son's epileptic condition as having been 'set back 10 years' by these failures. Participant 2 experienced great difficulty in trying to alert nursing staff to these failures and described herself as being reticent to return her son to hospital in the future because of this experience.</p> <p>I said I want an independent doctor here because you're not giving him the right medication at the right times. I was told that I was giving him too much and I said I'm giving him what he's always had for nearly 10 years. If I keep to the same routine he doesn't have these drops. You've set him back 10 years. – Participant 2</p> <hd id="AN0079243302-10">Accessibility of complaints process</hd> <p>Eleven of the twelve participants felt sufficiently informed of how to lodge formal complaints with hospitals and confident doing so if necessary. Only one participant expressed a reticence to complain because of a worry that it could somehow compromise the health care they were to receive. Participant 8 gave an account of a serious complaint concerning unexplained extended waiting times being taken very seriously by hospital staff who provided the participant with the opportunity to meet with senior hospital officials to discuss their grievance. Participant 8 was initially pleased with this response and a subsequent report that they were provided with concerning an enquiry into their complaint. However, a dissatisfactory follow‐up appointment arranged as a result of the complaint tainted this experience and left the participant feeling jaded towards the complaints process.</p> <p>Dr Marsh was very good he sat there for an hour and I mean it's a big hospital, he sat there for an hour nothing in front of him, he had no notes and even going out the door he said 'are you sure there's nothing else you want to say to me?' You do get the feeling he was horrified...but the follow up appointment has knocked it all back again as far as I'm concerned. – Participant 6</p> <hd id="AN0079243302-11">Provision of accessible 'Easy Read' information about conditions, treatments and relevant leg...</hd> <p>All participants consistently indicated a desire to be provided with appropriate, accessible information about medical conditions, treatment options and relevant legislation while in hospital. Despite this desire, participants seldom reported having been offered such information during hospital stays, and some participants reported a failure of hospital staff to provide it even when it was overtly requested by patients. Participant 1 stated that she was 'never' able to find easy read information when receiving hospital care and that hospital staff had never offered to provide her with easy read information. The researcher received mixed responses when asking participants whether they felt that they were usually provided with sufficient information about the benefits and risks of any medication prescribed during hospital stays.</p> <p>All participants agreed that improved provision of accessible information would have a positive effect on the hospital experiences of people with a learning disability – Participant 11 described this as his paramount concern when asked to provide the researcher with a particular recommendation to enhance the care of people with a learning disability in hospitals on Merseyside.</p> <p>I can never find any easy read, or I'm never offered it. It might be there but I'm never offered it. – Participant 1</p> <p>I've asked about Easy Read but I've never got any answers. They knew what I meant but, I can't remember what they said, they said they didn't have the format for Easy Read or something. – Participant 11</p> <hd id="AN0079243302-12">Lack of awareness of patient passports</hd> <p>Only two participants were in possession of a patient passport, and of those two, one disclosed that they no longer take it with them to hospital as it was never made use of by hospital staff. All of those participants who did not possess a patient passport expressed an interest in their use and to varying degrees stated that they believed ownership of one would have a positive effect on their future hospital experiences.</p> <p>Yeah, as I say it's vital when he goes that they get to know him, but it's hard when they ask some questions and he'll just say yes or no about what he can eat. They ask him questions and he says 'oh yeah that's ok' and it's not really, it'd be good to have something in writing for them to check. – Participant 3</p> <p>Now, I have got [a patient passport], I know you're supposed to take one in when you go in and leave it with them but it's never been asked for. You can take it in and leave it with them, they're supposed to fill out the back but they never have done, I did in the past take it but it was never used. – Participant 12</p> <hd id="AN0079243302-13">Flexibility of healthcare routines</hd> <p>Participants suggested a number of novel provisions to their hospital care which they felt would have a positive effect on their hospital experiences. Participants gave mixed accounts of whether they had found hospital staff willing to make these provisions.</p> <p>Participant 5 gave an account of an occasion when hospital staff agreed to bypass the normal admissions process so as to minimise the risk of a psychotic episode to his autistic son, although he believed this was largely because of the co‐operation of a personal contact of his within the senior staff of the hospital. Conversely, Participant 9 told of an incident during which hospital staff had refused to telephone her carer when she was being taken for a blood test and X‐ray. This occurred despite Participant 9's strong aversion to needles which caused her to become visibly distressed. Participant 9 would have been amenable to the examinations if her carer had been present to provide her with emotional support but was met with insistences that 'it had to be done' from hospital staff.</p> <p>Seven of the participants expressed dissatisfaction with what they perceived to be unnecessarily long waiting times. This can be particularly frustrating to patients with a learning disability who may not fully understand the purpose of their wait. Participants 5 and 6 each expressed fears about the ways in which subjecting their autistic children to long waits could present a psychosis risk and also a risk of violence to others being made to wait alongside them.</p> <p>Areas of hospital care in which participants expressed a desire to see reasonable adjustments made included visiting times, ward placement, waiting times, appointments, recreational occupation and queuing.</p> <p>I don't like needles you see, I can't stand needles and I even remember crying and screaming for me mum and they wouldn't get me mum, they just took me straight down. They did it but I told them not to do it, and I was screaming and crying but they wouldn't have it, they said 'it's got to be done Pat' and all this, but I said I want me mum and they wouldn't get me mum and they just left me. I still would've been screaming and crying but me mum would've calmed me down. – Participant 9</p> <p>He doesn't like going the doctor or hospital because he doesn't like waiting, he doesn't understand what he's waiting for and he gets quite aggressive and very vocal and noisy. I don't ever want to seem like I'm queue jumping but it's times like that I just wish that prior to the appointment I could let them know in advance that you know, he's got autism and he's nonverbal and he doesn't understand waiting and stuff like that. The flipside of it is Tom upsets the whole room, you know a room full of kids or he starts hitting out, because he does hit out at people and he can be violent. – Participant 7</p> <hd id="AN0079243302-14">Perceived staff attitudes</hd> <p>A consistently recurrent theme, in both the broader interview transcripts and the recommendations given by participants at the conclusion of each interview, was a desire to see greater empathy and understanding on the part of hospital staff when dealing with patients with learning disabilities. Nine of the twelve participants were unconvinced that the hospital staff they had encountered had either received specialist training for caring for people with a learning disability or had much experience of caring for people with learning disabilities. Those participants who had had positive experiences often credited kind, gentle, empathic attitudes shown by hospital staff as being the most important factors in these experiences. Conversely, those participants who appeared jaded towards hospital attendance usually cited exasperation with inconsiderate, or in one case ostensibly hostile, members of hospital staff.</p> <p>Absolutely superb, she was like the queen of the day. Absolutely everybody fussed over her, came in to see her, she just enjoyed the experience really until she came round after the anaesthetic and wasn't quite pleasant, but honestly they couldn't have done anything better for her. They fussed over her, they fed us, myself and two carers, brought us tea, coffee, sandwiches. Karen was the centre of whatever was going on and they just made sure she was ok. – Participant 6</p> <p>It wasn't obvious to us, was it, in their actions there was no evidence that they had had specialist training of that kind. Training among these people means going into a small class environment and listening to someone speak about it like going to a university class, that's a different thing to being able to solve the problems. – Participant 8</p> <p>I think he was a night nurse, the next day when he came in I asked him to get her some water and they wouldn't get any water, he was shouting and saying stuff to me –'she can't have water', and I said 'I know she can't have water but I just want to..' he wouldn't even get me any water. She was dry, all her lips were still dry, and he said 'I told you!' oh he was horrible. I ended up crying then, you know, and then the next night he was horrible again. – Participant 9</p> <hd id="AN0079243302-15">Discussion</hd> <p>It is striking that the results of this investigation suggest that people with learning disabilities on Merseyside appear to be contesting with the same difficulties in accessing hospital care as have been identified by previous national or international investigations. Based on the testimonies of those interviewed by the researcher, it is not possible to assert that the recommendations of Valuing People Now and Healthcare for All are being acted upon by healthcare staff employed at hospitals in the Merseyside area. Indeed, the recommendations listed at the end of this article overlap significantly with those made by these and other previous investigations and with the criteria listed in [<reflink idref="bib24" id="ref49">24</reflink>] recently launched 'Getting it Right' charter.</p> <p>At this point, the challenges faced by people with learning disabilities when accessing hospital care appear to have been thoroughly identified and it is disappointing to find that many healthcare staff still appear to be unaware of them. The researcher hopes that this article will contribute to the evidential basis on which future attempts to improve the hospital care of people with a learning disability on Merseyside are based.</p> <p>A number of the themes identified by thematic analysis and detailed above warrant further elaboration. The presence of a staff member such as the 'specialist learning disability nurse' discussed earlier would be an effective remedy to the feelings of isolation and of being in a 'constant battle' reported by many participants' carers during hospital stays, while also being a source of guidance to nurses faced with issues salient to the health care of people with learning disabilities. A member of hospital staff such as this could also act as a source of information on carer's rights – a lack of which was noted as a concern by two of the carers participating in the investigation. Acute hospital trusts are required to have protocols in place to provide information regarding learning disabilities, relevant legislation and carer's rights by the Care Quality Commission's 'Access to Healthcare for People with a Learning Disability' performance indicator. This role would be ideally fulfilled by a Learning Disability Liaison Nurse – an existing role already established in some hospitals. The apparent lack of awareness of the presence of any such healthcare staff on Merseyside displayed by the majority of participants in an aberration which the relevant local NHS trusts should address as a matter of priority.</p> <p>Royal Mencap's 'Getting it Right' charter, compiled completely independently of this investigation, also calls for the appointment of more Learning Disability Liaison Nurses in hospitals around the country. At a congress of the Royal College of Nursing in April 2010, a resolution to place a 'Learning Disability Nurse in every hospital' was supported by 92.39% (425 of 476) of those gathered ([<reflink idref="bib19" id="ref50">19</reflink>]). The researcher hopes that this article will contribute to the evidence base supporting the appointment of Learning Disability Liaison Nurses and their value in improving the hospital experiences of patients with learning disabilities and their carers.</p> <p>A lack of involvement of families and carers in the planning and provision of hospital care is one of the more prevalent themes in the research literature dealing with the subject of hospital care for people with learning disabilities. Previous research has demonstrated the importance of listening to carers as a means of detecting pain in patients with learning disabilities and shown it to be a more effective method than observing behaviour or relying on self‐report measures ([<reflink idref="bib11" id="ref51">11</reflink>]). Valuing People Now ([<reflink idref="bib7" id="ref52">7</reflink>]) recommends that 'Family and other carers should be involved as a matter of course as partners in the provision of treatment and care, unless good reason is given;' ergo, it is unacceptable that participants continue to experience difficulty when offering knowledge and advice to healthcare staff. Half of the twelve participants explicitly expressed a desire to see proactive verbal enquiries made by hospital staff as part of the admissions process, encompassing topics such as pain expression, complex dietary needs and effective communicative strategies. Once important information has been communicated to a member of hospital staff, they should be impelled to make a note of it and disseminate the information effectively to all appropriate members of staff charged with the care of that patient. Participant 8 expressed a fear that vital information was often not shared between nurses working different shift patterns or in different parts of the hospital and that this could have led to injury to their daughter because of a lack of understanding of her epilepsy on the part of hospital staff. This fear that different parts of the health service fail to communicate with each other effectively was shared by Participant 10 who described their experiences of an inability of hospital staff to 'sign post or find information and bring it back to us.'</p> <p>Although this investigation reinforces the importance of including the families and carers of patients with learning disabilities in the planning and provision of their hospital care, carers should not be expected to provide all of the patients' personal care during hospital stays. Of the ten carers who took part in the investigation, six described how they had felt it was necessary that they remain in hospital with their loved one from early in the morning until late at night to provide personal care for the duration of their hospital stay – an exhausting undertaking which sometimes caused the carer to miss work. Participant 2 reported perceived 'relief' among nursing staff upon her arrival at the hospital each morning to 'take over their jobs'. Nursing staff must not allow any lack of expertise or familiarity with caring for patients with learning disabilities to lead to an over‐reliance on families and carers.</p> <p>It is important that the apparent lack of availability of accessible information in hospitals on Merseyside is rectified. The research literature suggests that withholding information, either consciously or unthinkingly, can cause unnecessary distress to hospital patients with learning disabilities ([<reflink idref="bib18" id="ref53">18</reflink>]). This rectification should include the presentation of information in 'Easy Read' formatting, making use of pictorial aids and simple language. Easy Read information should be visible on hospital wards to encourage patients to request it, and patients with learning disabilities should be informed of its availability as a matter of routine. The researcher understands that considerable efforts are already being made by hospitals on Merseyside to make this a reality and hopes that this article can act as a vindication of those efforts and a justification for them to continue into the future. This is another area of significant overlap between the recommendations of this article and Royal Mencap's 'Getting it Right' charter. A related area requiring improvement is the provision and utility of patient passports (sometimes referred to as Health Passports) within hospitals, a lack of which was described by eleven of the twelve participants. The researcher believes the improved availability and utility of patient passports would contribute to the satisfaction of a number of this article's recommendations and empower hospital patients with learning disabilities to make active contributions to their own health care. The researcher wishes to qualify this recommendation with a cautionary note that hospital staff must be wary of the visibility of patient passports becoming stigmatising. Participant 1 expressed her concern that patients with a learning disability could be 'singled out' by having patient passports placed on their beds, saying 'it's like the person with the patient passport on your bed is the one with the learning disability... if it's obvious to all the patients that you've got a learning disability then it ostracises you again.'</p> <p>The researcher shares the belief of many of the participants that attitudes and communicative habits displayed by hospital staff are of paramount importance to the hospital experiences of people with learning disabilities. Hospital staff should be especially conscious of their manner and demeanour when engaging with people with learning disabilities, and their carers and learning disability awareness training should be provided to all nursing staff to ensure that all staff are aware of effective and appropriate communicative strategies. The planning of this training should involve people with a learning disability and their carers. The Care Quality Commission's 'Access to Healthcare for People with a Learning Disability' performance indicator already requires that acute hospital trusts have protocols in place to provide this kind of training, and the researcher is aware of efforts being made by healthcare bodies on Merseyside to conduct it. The researcher hopes this article offers further justification for these efforts and their continuation in the future.</p> <hd id="AN0079243302-16">Limitations</hd> <p>The sample size is small, and the findings should not necessarily be seen as being representative of the wider learning disabled population on Merseyside. The researcher makes no attempt to generalise the findings beyond the sample of participants involved in the investigation, which is not a statistical sample. No attempt has been made to represent the numbers of participants as rates. The sampling method used perhaps biases the study towards participants who have had particularly positive or negative hospital experiences. The sampling method biases the study towards service users and clients of learning disability charities and day care centres. The researcher did not contact hospital staff, and so their accounts of the participants' experiences are not represented. Some participants were describing experiences that took place more than 2 years ago, exposing them to a risk of recall bias. The investigation may have been exposed to bias by the fact that three of the interviewees were trustees of Mencap Liverpool, by whom the researcher was employed during the execution of this investigation.</p> <hd id="AN0079243302-17">Recommendations for healthcare professionals</hd> <p>The following recommendations are direct responses to the testimonies provided by the participants of this investigation. Each recommendation is followed by an indication of the theme on which it is based in parentheses.</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> Hospitals should make efforts to promote awareness of Learning Disability Liaison Nurses, their role, and the ways in which they can be contacted by patients. The researcher hopes that this report will contribute to the evidence base supporting the appointment of Learning Disability Liaison Nurses and their value in improving the hospital experiences of patients with learning disabilities and their carers. (Theme i)</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> Hospitals and general practitioners should engage in proactive collaboration to raise awareness about where and how annual health checks can be accessed by people with learning disabilities so as to maximise their uptake on Merseyside. (Theme ii)</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> Patients with a learning disability should be afforded input into choices made about their placement within hospital whenever circumstances allow. (Theme iii)</item> <p></p> </ulist> <p>• 4</p> <p></p> <ulist> <item> Hospital staff should direct proactive verbal enquiries towards the families and carers of patients with learning disabilities, so as to access the unique understanding, knowledge and evidence those people possess about the patient's disability and utilise it when making decisions about the patient's pathway to care as a matter of routine. (Theme iv)</item> <p></p> </ulist> <p>• 5</p> <p></p> <ulist> <item> Hospitals should establish protocols for providing the families and carers of hospital patients with learning disabilities with advice on how to effectively communicate their understanding, knowledge and evidence of the patient's learning disability to healthcare professionals, so as to optimise the usefulness of this information. (Theme iv)</item> <p></p> </ulist> <p>• 6</p> <p></p> <ulist> <item> All patients with learning disabilities and/or their carers should be provided with clear information about their responsibilities upon leaving hospital, ways in which they must maintain any ongoing treatments, signs of deterioration of their condition, appropriate ways in which they should recommence contact with the hospital and the circumstances under which this contact should be made. (Theme v)</item> <p></p> </ulist> <p>• 7</p> <p></p> <ulist> <item> Nursing staff should make reasonable adjustments to minimise disruption to the usual daily medication routines of patients with learning disabilities during hospital stays. (Theme vi)</item> <p></p> </ulist> <p>• 8</p> <p></p> <ulist> <item> Hospitals should ensure that accessible written information about medical conditions, treatment options and relevant legislation is available to all hospital patients with learning disabilities on request. Hospital staff should make hospital patients with learning disabilities aware of the availability of this material as a matter of routine. (Theme viii)</item> <p></p> </ulist> <p>• 9</p> <p></p> <ulist> <item> Hospitals should make patients with learning disabilities aware of the availability of patient passports, provide them with their own patient passport where requested, offer guidance to patients with learning disabilities on optimising their use and solicit for patient passports as a matter of routine when patients with learning disabilities are admitted. (Theme ix)</item> <p></p> </ulist> <p>• 10</p> <p></p> <ulist> <item> Nursing staff should adopt a flexible approach to the hospital care of people with a learning disability and that hospitals make all staff aware of their duty to provide reasonable adjustments to the care of patients with learning disabilities as legislated for by the Disability Equality Duty of the [<reflink idref="bib8" id="ref54">8</reflink>]. (Theme x)</item> <p></p> </ulist> <p>• 11</p> <p></p> <ulist> <item> All hospital staff should be provided with ongoing learning disability awareness training that emphasises the important of empathic staff attitudes to the hospital experiences of people with learning disabilities. (Theme xi)</item> </ulist> <hd id="AN0079243302-18">Conclusion</hd> <p>People with learning disabilities on Merseyside continue to contest with the same difficulties during hospital experiences as have been identified previously by numerous national and international investigations. These difficulties and possible solutions to them are well defined and established in the research literature, and it is important that healthcare staff begin to heed the recommendations of this and other investigations into the hospital care needs of people with learning disabilities.</p> <ref id="AN0079243302-19"> <title> References </title> <blist> <bibl id="bib1" idref="ref16" type="bt">1</bibl> <bibtext> Aintree University Hospital Trust (2006) Disability equality scheme (2006–2009). Liverpool, Aintree University Hospital Trust.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref1" type="bt">2</bibl> <bibtext> Alborz A., McNally R. & Glendenning C. (2005) Access to healthcare for people with learning disabilities in the united kingdom: mapping the issues and reviewing the evidence. J Health Serv Res Policy, 10 : 173 – 82.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref7" type="bt">3</bibl> <bibtext> Beange H., McElduff A. & Baker W. (1995) Medical disorders in adults with mental retardation. Am J Ment Retard, 99 : 595 – 604.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref2" type="bt">4</bibl> <bibtext> Bittles A.H., Petterson B.A., Sullivan S.G., Hussain R., Glasson E.J. et al. (2002) The influence of intellectual disability on life expectancy. J Gerontol, 57A : M470 – 2.</bibtext> </blist> <blist> <bibl id="bib5" idref="ref48" type="bt">5</bibl> <bibtext> Braun V. & Clarke V. (2006) Using thematic analysis in psychology. Qual Res Psychol, 3 : 77 – 101.</bibtext> </blist> <blist> <bibl id="bib6" idref="ref13" type="bt">6</bibl> <bibtext> Department of Health (2008) Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. London, Department of Health.</bibtext> </blist> <blist> <bibl id="bib7" idref="ref9" type="bt">7</bibl> <bibtext> Department of Health (2009) Valuing people now: a new three‐year strategy for people with learning disabilities. London, Department of Health.</bibtext> </blist> <blist> <bibl id="bib8" idref="ref54" type="bt">8</bibl> <bibtext> Disability Discriminations Act (2005) London, HMSO.</bibtext> </blist> <blist> <bibl id="bib9" idref="ref20" type="bt">9</bibl> <bibtext> Disability Rights Commission (2006) Equal treatment: closing the gap. London, Disability Rights Commission.</bibtext> </blist> <blist> <bibtext> Emerson E. & Hatton C. (2004) Estimating future need/demand for supports for adults with a learning disability in England. Available at <ulink href="http://www.lancs.ac.uk/fass/lhr/research/learning/download/estimatingfutureneed.pdf">http://www.lancs.ac.uk/fass/lhr/research/learning/download/estimatingfutureneed.pdf</ulink> (last accessed on 4 January 2011).</bibtext> </blist> <blist> <bibtext> Foley D.C. & McCutcheon H. (2004) Detecting pain in people with an intellectual disability. Accid Emerg Nurs, 12 : 196 – 200.</bibtext> </blist> <blist> <bibtext> Fox D. & Wilson D. (1999) Parents' experiences of general hospital admission for adults with learning disabilities. J Clin Nurs, 8 : 610 – 4.</bibtext> </blist> <blist> <bibtext> Hart S.L. (1998) Learning disabled people's experience of general hospitals. Br J Nurs, 7 : 470 – 7.</bibtext> </blist> <blist> <bibtext> Iacono T. & Davis R. (2003) The experiences of people with developmental disability in Emergency Departments and hospital wards. Res Dev Disabil, 24 : 247 – 64.</bibtext> </blist> <blist> <bibtext> Kilgour A.H.M., Starr J.M. & Whalley L.J. (2010) Associations between childhood intelligence (IQ), adult morbidity and mortality. Maturitas, 65 : 98 – 105.</bibtext> </blist> <blist> <bibtext> Lennox N.G. & Kerr M.P. (1997) Primary healthcare and people with an intellectual disability: a group practice survey. J Intellect Disabil Res, 41 : 365 – 72.</bibtext> </blist> <blist> <bibtext> McConkey R. & Truesdale M. (2000) Reactions of nurses and therapists in mainstream health services to contact with people who have learning disabilities. J Adv Nurs, 32 : 158 – 63.</bibtext> </blist> <blist> <bibtext> O'Regan P. & Drummond E. (2008) Cancer information needs of people with intellectual disability: a review of the literature. Eur J Oncol Nurs, 12 : 142 – 7.</bibtext> </blist> <blist> <bibtext> Royal College of Nursing (2010) A learning disability nurse in every hospital? (resolution). Available at: <ulink href="http://www.rcn.org.uk/newsevents/congress/2010/">http://www.rcn.org.uk/newsevents/congress/2010/</ulink> (last accessed on 4 January 2011).</bibtext> </blist> <blist> <bibtext> Royal Liverpool and Broad Green University Hospital Trust (2009a) Corporate report (April–September 2009).</bibtext> </blist> <blist> <bibtext> Royal Liverpool and Broad Green University Hospital Trust (2009b) Single equality and human rights guide (2009–2012).</bibtext> </blist> <blist> <bibtext> Royal Mencap (2007) Death by indifference. London, Mencap.</bibtext> </blist> <blist> <bibtext> Royal Mencap (2009) Annual health checks announced. Available at: <ulink href="http://www.mencap.org.uk/page.asp?id=4189">http://www.mencap.org.uk/page.asp?id=4189</ulink> (last accessed on 23 May 2011).</bibtext> </blist> <blist> <bibtext> Royal Mencap (2010) Getting it right: a campaign guide. London, Mencap.</bibtext> </blist> <blist> <bibtext> The Joint Committee of Human Rights (2008) A life like any other? human rights of adults with learning disabilities. London, Joint Committee of Human Rights.</bibtext> </blist> <blist> <bibtext> Webb J. & Stanton M. (2009) Better access to primary health care for adults with learning disabilities: evaluation of a group programme to improve knowledge and skills. Br J Learn Disabil, 37 : 116 – 22.</bibtext> </blist> </ref> <aug> <p>By Adam Peter Dinsmore</p> <p>Reported by Author</p> </aug> <nolink nlid="nl1" bibid="bib16" firstref="ref3"></nolink> <nolink nlid="nl2" bibid="bib13" firstref="ref4"></nolink> <nolink nlid="nl3" bibid="bib14" firstref="ref5"></nolink> <nolink nlid="nl4" bibid="bib17" firstref="ref6"></nolink> <nolink nlid="nl5" bibid="bib18" firstref="ref8"></nolink> <nolink nlid="nl6" bibid="bib10" firstref="ref10"></nolink> <nolink nlid="nl7" bibid="bib15" firstref="ref11"></nolink> <nolink nlid="nl8" bibid="bib26" firstref="ref12"></nolink> <nolink nlid="nl9" bibid="bib11" firstref="ref14"></nolink> <nolink nlid="nl10" bibid="bib12" firstref="ref15"></nolink> <nolink nlid="nl11" bibid="bib20" firstref="ref22"></nolink> <nolink nlid="nl12" bibid="bib21" firstref="ref23"></nolink> <nolink nlid="nl13" bibid="bib22" firstref="ref24"></nolink> <nolink nlid="nl14" bibid="bib25" firstref="ref25"></nolink> <nolink nlid="nl15" bibid="bib23" firstref="ref31"></nolink> <nolink nlid="nl16" bibid="bib24" firstref="ref49"></nolink> <nolink nlid="nl17" bibid="bib19" firstref="ref50"></nolink>
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  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. Sep 2012 40(3):201-212.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2012
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Negative+Attitudes%22">Negative Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Hospitals%22">Hospitals</searchLink><br /><searchLink fieldCode="DE" term="%22Learning+Disabilities%22">Learning Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Semi+Structured+Interviews%22">Semi Structured Interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Patients%22">Patients</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22United+Kingdom+%28England%29%22">United Kingdom (England)</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/j.1468-3156.2011.00694.x
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1354-4187
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: People with a learning disability face a number of challenges when seeking access to hospital care which are often distinct from those faced by the general population. Numerous statistics indicative of these challenges are represented in the academic literature. Previous research has suggested several reasons for the continued existence of these challenges, including a lack of expertise in the provision of health care to people with learning disabilities and negative attitudes towards this population held by healthcare professionals. As a means of elucidating the hospital experiences of people with learning disabilities on Merseyside, the researcher conducted 13 semi-structured interviews--an analysis of 12 of which are included in this article. Of these 12 interviews, two were conducted with an unaccompanied person with a learning disability, three were conducted with a person with a learning disability alongside their carer, and seven were conducted with the carer or carers of a person with a learning disability. The topics discussed in these semi-structured interviews were determined by the findings of a literature search and pilot interview. Emergent themes within the interview transcripts are discussed and recommendations made for healthcare professionals engaged in the hospital care of people with learning disabilities. It is concluded that people with learning disabilities on Merseyside continue to contest with the same difficulties during hospital experiences as have been identified previously by numerous national and international investigations. (Contains 1 table.)
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: Ref
  Label: Number of References
  Group: RefInfo
  Data: 26
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2012
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ976816
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ976816
RecordInfo BibRecord:
  BibEntity:
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      – Type: doi
        Value: 10.1111/j.1468-3156.2011.00694.x
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
        StartPage: 201
    Subjects:
      – SubjectFull: Access to Health Care
        Type: general
      – SubjectFull: Mental Retardation
        Type: general
      – SubjectFull: Negative Attitudes
        Type: general
      – SubjectFull: Hospitals
        Type: general
      – SubjectFull: Learning Disabilities
        Type: general
      – SubjectFull: Semi Structured Interviews
        Type: general
      – SubjectFull: Patients
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: United Kingdom (England)
        Type: general
    Titles:
      – TitleFull: A Small-Scale Investigation of Hospital Experiences among People with a Learning Disability on Merseyside: Speaking with Patients and Their Carers
        Type: main
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          Name:
            NameFull: Dinsmore, Adam Peter
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          Dates:
            – D: 01
              M: 09
              Type: published
              Y: 2012
          Identifiers:
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              Value: 1354-4187
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            – TitleFull: British Journal of Learning Disabilities
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