Improving Acute Hospital Care for Adults with a Learning Disability and Adults with Autism in the East of England Guidance on undertaking audits of reasonable adjustments made for adults with a learning disability / autism using acute hospital services April 2013 This Guidance will enable acute hospital NHS Trusts to put in place systems to monitor and report on the effectiveness of reasonable adjustments made to meet the needs of adults with a learning disability and/or autism. The Guidance has been drawn up by the East of England A2A Network of Learning Disability Liaison Nurses / Disability Advisor with the support of Gerry Toplis on behalf of NHS Midlands and East and, latterly, the east of England Managed Clinical Network (Mental Health and Learning Disability). The key components of the reasonable adjustments audit are set out on section 2 and can be summarised as: 1. A flag on patient information systems to identify adults with a learning disability and / or autism using acute Trust services. 2. Case note audits which ask whether the need for reasonable adjustments has been identified and, where noted, have been made 3. Using existing patient experience surveys to identify if reasonable adjustments have been made. 4. Evidence about individual cases collected by the learning disability liaison nurse/disability advisor. 5. Collating and reporting on the reasonable adjustments audit. 1. Context In 2011/12, all 17 acute hospital NHS Trusts in the east of England undertook self assessments of their services in relation to meeting the needs of adults with a learning disability/autism. They then agreed improvement plans for 2012/14 with commissioners and the Learning Disability Partnership Boards. NHS Midlands and East reviewed each of the 1
self assessments and improvement plans and published a report in September 2012, available here: https://www.eoe.nhs.uk/page.php?page_id=2159 The report recommended that acute hospital Trust Boards should use a Learning Disability/Autism Dashboard of Improvement, Quality and Efficiency Measures to effectively monitor and scrutinise the difference being made to people s care, their health outcomes and their experience as patients (pages 15 and 16 of the report). One of the key measures in this Dashboard is an audit of the reasonable adjustments being made. The report recommended that the east of England A2A Network should draw up options and guidance for Trusts on undertaking audits of reasonable adjustments. It should be noted that this approach is relevant to other groups of patients e.g. those with dementia or mental health difficulties. Each group will raise particular issues in putting reasonable adjustments in place and so it is important that a flagging system is in place to be able to identify people in any patient groups for whom reasonable adjustments are to be audited. 2. Guidance It is not the aim of this Guidance to develop separate systems for the audit of reasonable adjustments. Rather, it is to build on the current audit work and the information available to Trusts to enable periodic reports to be provided as part of the Learning Disability/Autism Dashboard. 2.1 Learning Disability/Autism Flag All acute hospital NHS Trusts in the east of England either have a learning disability/autism flag on their patient information systems or are implementing one. This is key to enabling this group of people to be identified and included in the audit work. 2.2 Case Note Audits Audits of case notes are carried out very regularly by all Trusts. These can provide evidence as to whether the need for reasonable adjustments has been identified and recorded by clinical staff. However, sometimes reasonable adjustments are identified and made as part of everyday practice e.g. easy read menu cards, without a note being made in case records. It can also difficult to find out from case notes whether the reasonable adjustments have actually been made and how effective they were. This information is likely to be more available through the patient experience survey returns (see 2.3 below). Some Trusts have developed specific documentation for nursing staff to use: James Paget University Hospital NHS Foundation Trust and Ipswich Hospital NHS Trust: a Learning Disability/Autism Reasonable Adjustments Tool (Appendix 1) 2
Luton and Dunstable University Hospital: Nursing Initial Assessment documentation with specific sections regarding people with a learning disability (Appendix 2). This documentation can be included in current case note audit work. Addenbrooke s University Hospital NHS Foundation Trust has developed an audit tool for the care of patients with a learning disability, including the reasonable adjustments made (Appendix 3). It is recommended that each Trust should: 1. Decide if nursing documentation should make specific reference to the needs of people with a learning disability and/or autism. 2. Ensure that it has an agreed process for including case notes of people with a learning disability/autism in the regular cycle of case note audits. 3. Agree the level of detail about reasonable adjustments it requires through case note audits, including the possibility of a specific audit tool for the care of patients with a learning disability. 4. Agree how frequently it will collect this information e.g. monthly, quarterly 2.3 Patient Experience Surveys Patient experience survey returns will often provide information about whether reasonable adjustments have been made for someone and how successful they were. However, this information is not usually identified and used as evidence about the provision of reasonable adjustments. It is recommended that the analysis of patient satisfaction survey returns by adults with a learning disability/autism or by their family carers should include identifying and reporting on: 1. The reasonable adjustments people with a learning disability or family carers report as being made 2. The benefits arising from those reasonable adjustments 3. The reasonable adjustments people report as being requested but not made 4. The impact of these reasonable adjustments not being made. 2.4 Evidence Collected by the Learning Disability Liaison Nurse/Disability Advisor The learning disability liaison nurse/disability advisor in each Trust will have contact with many, but not all, the adults with a learning disability/autism using the Trust s services. 3
Through this, they will gather rich evidence of the reasonable adjustments needed by people, whether these are being made by the hospital s services, and how successful they are. These staff will be particularly involved in making reasonable adjustments for people with more complex needs and will be able to collect information on how well the Trust is able to act flexibly and effectively in making these adjustments. It is recommended that the evidence collected by the Learning Disability Liaison Nurse / Disability Advisor is a key component in reporting on reasonable adjustments, enabling the Trust to understand how well it is able, as a service system, to make effective reasonable adjustments for the full range of needs which adults with a learning disability/autism have. 2.5 Collating and Reporting on the Reasonable Adjustments Audit. It is likely that the most effective means of collating the evidence from the patient case note audit and patient experience surveys is by the Trust s audit team and the learning disability liaison nurse/disability advisor working together and putting this alongside evidence collected by the latter through their regular work to provide a joint report. The NHS Midlands and East report recommends that the Dashboard of Measures is reported to acute hospital Trust Boards at least annually, but possibly more often. There are different Board sub groups used by Trusts to receive this sort of information: Patient Experience Groups; Safeguarding Groups; Equality and Diversity Groups. It is suggested that the appropriate group will want to decide how frequently they receive reports specifically about reasonable adjustments and how these will be included in the Dashboard reported to the Board. It is recommended that: The hospital Trust s audit team and the Learning Disability Liaison Nurse / Disability Advisor work closely together to collate evidence from the approaches outlined previously and provide a joint report on the findings. The appropriate Trust Board sub group agrees how frequently they receive reports specifically about reasonable adjustments and how these will be included in the Dashboard reported to the Board. For further information about this guidance, please contact Gerry Toplis: gerry@toplisconsulting.co.uk 4
APPENDIX 1 Patient ID Label or Patient Name DOB Hospital Number Learning Disability/Autism Reasonable Adjustment Tool NHS Number Has Ward Matron/ Head Matron been notified of patient with a learning disability? Has the Learning Disability Liaison Nurse been notified of patient with a learning disability? Is there a learning disability/autism alert for this patient on IPM? (If no please inform Learning Disability Liaison Nurse) Has ethnicity data been recorded on IPM? (if no please input) Has contact relative been contacted? Do carers have contact details for ward? Do carers have contact details for Learning Disabilities Liaison Nurse? Has Community Learning Disability Team been informed of admission? Does the patient have a Health Action Plan or Health Passport to inform what reasonable adjustments are necessary? Are staff aware that they must read the Health book or Health Passport to help inform their care? General Reasonable Adjustments Required Communication Routines or ways of doing things Behaviour Sight Hearing Medical interventions Appointment times Carer involvement Other Planning Admission Functional Assessment of Mental Capacity IMCA Required Best interests meeting Information in easy read / accessible format 5
Pre treatment teaching De sensitisation Pre admission Visit Anaesthetist Re: fasting times/ pre medication Specialist Equipment required Level of support agreed to be provided by house staff All investigations/procedures co ordinated together Other For admission Appropriate Bed assigned, e.g. side room Routine needs Medication preferences Eating and Drinking Specific dietary needs Personal hygiene support Continence support Specific Positioning and mobility needs Sleep pattern Pain Management Carer Passport and Carer contract Other Discharge Planning Have the patients care/support needs changed? Is a review of the patients care package required? Have the Community Learning Disability Team informed of discharge? Has an Easy Read Discharge Plan been completed? Has Medication changed? Does discharge medication need ordering in a specific mode? Please note here: E.g liquid form/ blister pack/ dossett box Carers Contract Completed 6
APPENDIX 2 LUTON AND DUNSTABLE NHS FOUNDATION TRUST NURSING INITIAL ASSESSMENT DOCUMENT The Nursing Initial Assessment document used by Luton and Dunstable hospital includes specific reference to patients with learning disabilities on these pages: Page 1 (under Alerts) Page 5 (Cognitive Assessment) Page 16 (under Other: patient is happy to have information regarding 'help required with' displayed on Wall refers specifically to people with a learning disability, with the Learning Disability Liaison Nurses using this as a prompt to put up a sign which says 'to help you care for me please look at my Health Action Plan and All about Me on my bedside cabinet') Pages 17/18 Discharge checklist The document is available here: L&D Nursing Assessment.pdf 7
APPENDIX 3 Care of Patients with a Learning Disability Audit Tool (1718) CRN: WARD: ALERT present on HISS: Section One: Emergency Department (ED) Admission and Documentation 1. Was the patient admitted via ED? YES / NO (If no, please go to section 2) 2. Was the following information documented? Please look at the ED notes? Yes No Comments Does the patient s past medical history (PMH) include the learning disability? Are the patients communication needs documented? Are the patients mobility needs documented? Are the patients home circumstances documented? Has the patient been asked about their pain? (pain score documented?) 8
Section Two: Learning Disability Passport and Nursing Documentation 1. Does the patient have their Learning Disability passport? YES/ NO (If no, please go to section 3) 2. If appropriate have any reasonable adjustments been made (and documented) to the patients care plan in respect of the following as highlighted in the Learning Disability passport: Patients needs as stated in the Documented reasonable adjustment Learning Disability Passport made? (if appropriate) How to communicate with me How I eat What to do if I am anxious Medical interventions How I take medication How you know I am in pain Moving around Personal care 9
Patients needs as stated in the Learning Disability Passport Documented reasonable adjustment made? (if appropriate) Seeing/ hearing Safety Sleeping Likes/ dislikes 3. Has there been communication with the patient s next of kin/ carers? YES/ NO/ NA Any comments: 4. If the patient is being specialled have the appropriate number of checks been made? YES/ NO/ NA Any comments: 5. Has consideration been made for the patient making informed decisions? e.g. consent YES/ NO/ NA Any comments: 10
Section 3: Nursing Quality Metrics Questions 1. Please answer the following questions which appear on the Nursing Quality Metrics based on the patients time on the current ward: Yes No N/A Comments: Pain Is measurement of the severity of pain (pain assessment/trust's pain rating scale) recorded in the patient's notes? Is there evidence in the notes that effective pain management has been planned and implemented? Observations Have the observations been done at the frequency indicated? Is there a MEWS score for every set of observations? Do all entries in the last 72 hours or since admission to this ward include a staff signature per set of observations? Nutrition Has the patient been asked if they have any special dietary requirement and is this documented? Is the patient's weight and/or BMI documented within 24 hours of admission to this ward and weekly thereafter? Is the patient's nutritional risk recorded within 24 hours of admission to this ward and at least weekly thereafter? If the nutrition risk score is moderate or high, is there a separate adult nutrition care plan completed? Has referral to SALT been made? 11
Falls Has a falls risk assessment been completed within 12 hours of admission? If a falls risk has been identified, has a falls risk care record been completed? Pressure Area/ Manual Handling Has a pressure ulcer risk assessment been completed within 6 hours of admission? Has the neurological deficit section been completed in the pressure ulcer risk assessment? Has the pressure area care record been completed daily for patients with a waterlow >10? For patients unable to reposition independently, has a daily repositioning chart been complete? Has the moving and handling risk assessment been updated within the last 7 days or since admission to this ward? 12
Section 4: Environment 1. Please answer the following questions regarding the patients environment: Does the patient have easy reach to a call bell (if appropriate) Is the patient in a side room (if appropriate) Yes No N/A Comments Has medication been given appropriately? i.e. supervised Is the patient on a red tray/ supervised during mealtimes (if appropriate) Is the traffic light board up to date? Were bed rails/ interventions in place as appropriate? Is the environment surrounding the patient safe? 13
Section 5: Personal Care 1. Please answer the following questions regarding the patient s personal care requirements on the day of the audit: Has the patient had their teeth brushed today? Yes No N/A Comments Has the patient had their hair combed? Has the patient had their clothes changed? Has the patient had a wash? 14