WORKING TOGETHER TO GET IT RIGHT!!

WORKING TOGETHER TO GET IT RIGHT!! Author: DELIVERING HIGH QUALITY HOSPITAL SERVICES FORPEOPLE WITH A LEARNING DISABILITY IN EAST CHESHIRE NHS TRUST The Learning Disability Group Date: 1 st August 2013 Review Date: 1 st August 2015

Contents Page Executive Summary 1 The Best Possible Patient Journey.. 2 (i) Planned Admission (ii) Urgent and/or Emergency Admissions 3 (iii) Outpatients Appointments (iv) Discharge Planning Patient Passport: Guidance Document. 4 Patient Passport: Template Example.... 5 Guide for Learning Disability Risk Assessment.. 6 Risk Assessment and Reasonable Adjustment Care Plan. 7 Patient Pre-Discharge Meeting Form. 10

Executive Summary Working together is fundamental to high quality care provision particularly when meeting the challenges associated with supporting people with learning disabilities who have a history of poor quality health care provision and receive care and support from a wide range of carers ranging from families to paid carers. Carers have a wealth of knowledge but may not hold medical qualifications and do not always know about the services that are available. This guidance will enable more co-ordinated and individually tailored care to be provided, enabling people with a learning disability to have their health needs met as fully as possible. Joint working arrangements, joint training, the use of patient passports and closer liaison between services will foster greater knowledge and understanding of the respective roles of hospital and community services. This guidance has been developed by a multidisciplinary team representing East Cheshire NHS Trust, Cheshire and Wirral Partnership NHS Foundation Trust, East Cheshire Advocacy, David Lewis, The Rossendale Trust and carer representatives. It addresses a number of fundamental issues that will guide staff towards delivering high quality services to people with learning disabilities accessing services within Macclesfield District General Hospital which is an integral part of East Cheshire NHS Trust. 1

The Best Possible Patient Journey: How can we do it? Planned Admission: If the person is known to have a learning disability, the patient and carer (where appropriate) will be contacted by a member of the admissions team to negotiate a date for their planned admission. Consideration will be given to combine procedures where this is in the patient s best interest. For example, during anaesthesia, thought will be given for opportunities to undertake other procedures such as blood tests, scans etc to avoid any further distress to the patient. Pre-assessment appointments will be planned with as much time before admission as possible, to gather information about the patient and highlight what additional care is required. Before any planned admission, the pre-operative assessment team can provide the patient with an opportunity to visit the ward to get to know the environment. Accessible information, including a selection of pictorial patient journeys, is available through the East Cheshire NHS website. Prior to admission, risks will be assessed and individual reasonable adjustments will be considered including: o A side room o Opportunity for a carer to stay with the patient throughout the patient journey o The need for sedation for procedures. Carers (where appropriate) will ensure that all relevant information is available to hospital staff. This includes a patient passport (see pages 7 & 8) and details of medication or any specialist advice and guidelines, such as special equipment and diet. Guidance regarding completion of the patient passport is given on pages 5 & 6. The Patient Journey Team (01625) 661459 or 661914 is informed of any admission of a known person with a learning disability. 2

Urgent/Emergency Admissions: If it is anticipated that the patient may present significant challenges, carers will contact A&E on (01625) 661451 or 661452 prior to admission to discuss the relevant issues. Carers will provide the Patient Passport (where available) to the staff at reception who will then be able to either assist or arrange assistance for the individual with their needs. If admitted to a ward, the email alert system in place will ensure that the Patient Journey Team is informed of the admission. A risk assessment and reasonable adjustments care plan will need to be completed by the admitting nurse if one has not already been completed prior to admission. A copy of the form and guidance is given on pages 9-11. If the patient is discharged following their visit to A&E, the patient and/or their carers must be provided with a copy of the electronic discharge record (EDNF) containing a summary of any investigations/treatment undertaken including information on any changes to medication and follow-up appointments. Outpatients Appointments: If reasonable adjustments e.g. specialist equipment or services, are required the carer should contact outpatients prior to the appointment on 01625 661777. The carer will hand over the Patient Passport to the receptionist or clinic nurse on arrival. The clinic nurse will provide additional support and information if required. They can then direct the patient and their carer to other hospital departments. Directional maps may be provided. For all patients with learning disabilities, consideration will be given to the following: o Providing accessible information as appropriate o Giving first or last appointments o Offering double appointments o Providing a quieter waiting area to minimise anxiety levels and avoid risks to other patients safety. 3

Discharge Planning: As soon as possible after admission, a patient and their carer will be advised of an estimated date for discharge The Patient Journey Team will be aware of the presence of an adult with a learning disability on the ward via the email alert system. Any factors which may prevent discharge back to the person s home should be highlighted to the Patient Journey Team as soon as possible. A pre-discharge meeting will be offered prior to discharge and a copy of the discharge form completed during the meeting (pages 13 &14) will be given to the patient and/or their carer(s). If the pre-discharge meeting does not take place for any reason, eg carer declined, this will be documented on the discharge form usually completed during the meeting. The Patient Journey Team can be contacted on 01625 661459 or 01625 661914 during the hours 08.30 16.00 daily. 4

PATIENT PASSPORTS: A USER GUIDE FOR CARERS AND STAFF SUPPORTING PEOPLE WITH LEARNING DISABILITIES IN EAST CHESHIRE. What is the need for a patient passport? A patient passport provides immediate and important information for doctors, nurses and administrative staff in an easy to read form, promoting a positive experience for people with learning disabilities going into hospital. How is information gathered? Information recorded on the passport must be collected in consultation with the service user, their family and any other carers and professionals involved in caring and supporting them, whether this is at home, at day services, at work, at college or at hospital. Consent If the patient has a passport completed prior to admission, staff can be assured that the patient s consent will have been obtained or it will have been deemed in the patient s best interest. When and how should the patient passport be used? The patient passport should be taken with the service user when -: they are admitted to hospital for any planned or unplanned assessment and treatment attending outpatients appointments any other health appointments. The Patient Journey Team will be informed of the service user s admission to a ward via the email alert system but not contacted when attending for routine outpatient appointments. The patient passport should move around the hospital with the service user and any necessary updates should be written on the passport by hospital staff. How should the patient passport be completed? The front page contains important information for doctors and nurses who will be required to assess and treat the patient. The reverse contains personal information which staff need when booking in or arranging discharge. The front page has a traffic light sequence as illustrated below. At the top there is space to enter the service users name and a recent photograph. The remainder is split into 4 sections and information within each section needs to be entered. Medical Information, Risks & Communication Support Environment 5

Medical Information o What present medical conditions exist, known allergies, fears and phobias and how is medication taken? Include a copy of the medication record sheet or repeat prescription form. o A full medical history can be provided later. Possible Risks Communication difficulties, which could affect capacity and consent Medication Pain management Dysphagia, (swallowing difficulties) which can increase risk of choking, aspiration pneumonia, dehydration and malnutrition Behaviour Personal hygiene Discharge (following treatment) Every individual is different therefore please ensure you carry out a risk assessment to identify ALL risks for each person. Communication o Level of comprehension/capacity to consent o How does the person communicate? e.g. Makaton, pictures, words, use of meaningful objects (objects of reference). o How does the person let you know they are comfortable or in pain e.g. gesture, behaviour, pain scale? o How it is best to explain procedures e.g. pictures, Makaton, words, Support. o Staffing levels e.g. who needs to stay and how often o Seeing/hearing, personal care (incl. continence, washing, dressing) o Sleeping (routine, lights on, music playing, night time seizures?) o Keeping safe (e.g. absconding, behaviours, bedrails) o In new surroundings e.g. will or won t wait, needs time to absorb surroundings/information), hobbies and interests Management/de-escalation of challenging/self-injurious behaviours e.g. distraction techniques. Environment. o Considerations to lighting, noise, smell, crowds and space. Examples include such factors as the need for side rooms, wheelchair access or use of a hoist. Once the front sheet is complete, the reverse side, which includes mainly personal information, needs to be filled in. Ideally every box/line should have an entry made. How is quality of the patient passport maintained? Once completed, it is important that the patient passport is checked by a colleague who has experience of care planning or who has a good understanding of patient passports. The passport should be reviewed on a minimum 6 monthly basis or as circumstances change i.e. medication and any updates should be added at the review stage. The name of the person who reviewed the passport and the review date should be added to the reverse side. The passport should then be reprinted for taking to hospital again when required. 86

Name Patient Passport Insert Picture here Medical Information Risks (Please complete Reasonable Adjustment (RA) care plan) Communication Support / Environment *PLEASE MAKE SURE THIS FORM TRAVELS WITH ME THROUGHOUT THE HOSPITAL* 9 7

Name: Address: Telephone Number: Date of Birth: / / Next of Kin: Preferred/Alternative Contact (please specify) if different to Next Of Kin: Advocate: G.P: Known Allergies: Last known tetanus: National Health Number: Religion: Ethnicity: Completed by: Reviewed by: Date: Date: 8

REASONABLE ADJUSTMENTS FOR PEOPLE WITH LEARNING DISABILITIES A risk assessment MUST be carried out for all patients with a learning disability who are admitted to hospital. This will enable staff to identify what reasonable adjustments can be made. These should be recorded on the Reasonable Adjustments Care Plan (see page 11). To help hospital staff highlight patients who need reasonable adjustments, laminated yellow signs are provided on the wards. These can be put next to the patient s name on the white board and on the board over the patient s bed, so that all staff are aware and follow the reasonable adjustments that have been agreed. The sign looks like the one below: RA Hospital staff can contact the area matron for help and advice. The Risk Assessment Reasonable Adjustment Care Plan (RARA) should be completed within 24 hours in line with other Risk Assessments. The patient / carer should be involved in completion where possible. Reasonable adjustments for people with a learning disability can be achieved by not only removing physical barriers to healthcare provision, but changing policies and procedures, staff training schedules and service delivery to ensure that they work as well for people with learning disabilities as for all other people. Practical ways of doing this for people with a learning disability include: Communication, e.g. How does the person communicate such as verbally or by using Makaton? Is accessible information such as pictorial pathways and easy read booklets required? Do they have glasses/hearing aids to aid communication? Capacity & Best Interests, e.g. Does the person understand the information about the decision specific investigation/treatment? Do alternative forms of communication (easy read, Makaton, pictures) need to be used to assess capacity? Is the involvement of an Independent Mental Capacity Advocate (IMCA) required? Mobility e.g. Does the person need a hoist? Is there a leaf symbol on the white board to identify risk of falls Medication e.g. Is medication required at specific times to reduce risk of seizure? Is medication required in liquid/dispersible format due to swallowing problems? Pain, e.g. How does the person expresses pain? Is there a need to discuss this issue with family /carers who are often the experts in the person s care? Should the Patient Passport be checked to identify means of communication e.g. verbally, Makaton, pictures? Should staff speak with the with pain management team at MDGH regarding use of appropriate pain tools? Eating/drinking, e.g. What specialist equipment is required? This may include such equipment as cutlery with built up handles, stay warm plates and adapted cups such as doidy cups and nosey cups. Dysphagia e.g., Is a swallowing assessment by a Speech and Language Therapist required due to such factors as coughing during/just after swallowing food and drink and a history of chest infections? Does the person require soft/pureed diet and/or 9

thickened fluids to reduce risk of aspiration and choking? When eating, is there a need for observation and/or assistance? Behaviour, e.g. Could a specific behaviour be linked to a physical health issue and not their learning disability? This may be shown by such as a person hitting their head which may indicate a headache, toothache, or earache. An example of another question that may be asked is Does the person have any sensory issues such as sensitivity to bright lights, loud noises and touch? Personal hygiene, e.g. What level of support does the patient/carers require? This will be helped by checking patient passport and speaking with family/carers who are often the experts in the person s care. Discharge, e.g. Has a pre discharge meeting been planned/held involving the patient, family/carers, patient journey team and all other relevant others health professionals? Other This section can be used to include any other risks not previously identified. The document must be signed and dated at the end by whoever completed the form and the staff that checked it. 10

Please Insert patient Information sticker RISK ASSESSMENT/REASONABLE ADJUSTMENTS CARE PLAN Patient s Name: Issue Risk identified Reasonable adjustment Communication Capacity and best interests Mobility Medication Pain Eating/drinking Dysphagia swallowing difficulties leading to increased risk of choking or aspiration Behaviour Personal hygiene Discharge, (including predischarge meeting) Other Completed by (Print Name): Checked by Nurse (Print Name): Date updated: Issue Date: 1 st August 2013 Review Date: 01/08/2015 Author: Lyn Bailey 11

Patient Pre-Discharge Meeting. Meeting required (Yes/No) (circle as required). If Yes: Date meeting agreed Signature. If No: Please give reason... Signature.. Discharging Consultant... Ward and contact number... Date of admission... Date of Pre-Discharge Meeting... GP... Was a capacity assessment carried out? Yes No Was a Best Interests Meeting held? Yes No Are minutes available from the Best Interests Meeting? Yes No Reason for admission. Additional diagnosis where appropriate. Summary of treatment - operations, procedures and/or investigations undertaken including x- rays, blood tests & scans: Have the patient s needs changed? How have the patient s needs changed? YES/NO Is the patient requiring palliative care? Has palliative care plan been discussed with patient/family/carer YES/NO YES/N/A

Does the patient require any additional equipment upon discharge? What equipment is required and why? YES/NO Is any training required for the patients/carers? If so what type of training and who will provide? YES / NO Any infections pressure sores/virus present upon discharge? Please provide further information. YES/NO Has any new medication been prescribed during this hospital stay? Please highlight what has been prescribed. YES/NO Has any medication been discontinued during this hospital stay? Please highlight what has been discontinued. YES/NO Where will the person be discharged to? How will the person get there? Is a follow-up appointment required? YES / NO Consultant... District Nurse... Fracture Clinic... Other... Who will be Supporting? (If appropriate):... Who to contact at the hospital for advice following discharge: Name/position of person:.. Contact number:. In the event of an emergency call 999. Any additional information (e.g. date for suture removal). Completed by:... Role:.. Signature... Date:...