Mildmay UK Hospital. Services and Referral. Registered Charity No: 292058. www.mildmay.org

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Mildmay UK Hospital Services and Referral Registered Charity No: 292058 www.mildmay.org

Our Vision A world in which everyone living with HIV can have a life in all its fullness Our Mission To respond effectively to HIV and related health issues, through specialised care, treatment, training, education and research. Introducing Mildmay Mildmay UK Hospital is a charitable HIV hospital that is an NHS service provider, located in Shoreditch, London. We provide services, treatment and care for people living with HIV and are the only centre in Europe dedicated to rehabilitation of patients with HIV associated neuro-cognitive impairment. We are a specialist HIV unit and receive funds commissioned by Clinical Commissioning Groups. The majority of our contracts are within the M25 region, but we accept referrals from all over the country. Mildmay s highly skilled medical and nursing care, treatment and rehabilitation is based on individual need, combining a range of therapies to provide a holistic model of support. We aim to deliver services of the highest quality and constantly seek to improve through listening, reflecting, learning and action.

Our Impact Measuring rehabilita/on outcomes Comparison of There are a number of international studies (example Admission given below) and Discharge demonstrating scores an improvement in cognitive abilities of patients diagnosed with HAND pre- (NPDS and post- & Intervention. HoNOS ABI combined) S.B. Rourke, T. Sota, S. Rueda, M. Atkinson, Cognitive Rehabilitation (use of cognitive neuro-rehabilitation approaches) in HIV/AIDS, CAHR 2007 60 50 40 30 Admission Pre-intervention NPDS and HoNos Discharge Post-intervention NPDS and HoNOS 20 Verbal Fluency 10 Attention 0 Auditory Visual Fine-motor Fine-motor Complex Simple Cognitive working working Dexterity Dexterity Speed Speed Flexibility memory memory (RH) (LH) 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 Since April 2012, we have been using the UK specialist Rehabilitation Outcomes Collaborative (UKROC) data Rackstraw et al. A preliminary inves/ga/on of the use of a basket of outcome measures within a rehabilita/on service for adults diagnosed collection tool. The full UKROC with dataset HIV related represents neurological disorders. the inpatient Abstract 5.8, rehabilitation 10 th AIDS Impact Conference, subset of Santa the Fe, Long USA; September Term Neurological, 2011 Conditions dataset. It comprises of demographic information and processes data for each admitted case episode together with: The Rehabilitation Complexity Scale (as a measure of rehabilitation needs) At least one of an agreed set of outcome measures which include: Full dataset - The UK FIM+/-FAM Minimum dataset - Barthel Index 80% of patients are able to return to independent living at discharge from Mildmay. Working with our multi disciplinary team, patients are encouraged to set their own goals and work towards the rehabilitation outcomes they have identified as being important. We work in partnership with organisations and consortia (including NHS and other HIV service providers) to facilitate ongoing excellence in clinical care. We provide an environment to break down stigma, so patients feel safe and able to work through specific issues relating to their HIV diagnosis. In addition to the above tools which measure need and outcome there are two further tools in use that measure the input provided - Nursing and Therapy dependency scales. Measuring rehabilita/on outcomes Comparison of Lead by the Medical Director, we frequently publish and present at international conferences, where we are able to substantiate the ongoing effectiveness Admission of our service. and Discharge scores (NPDS & HoNOS ABI combined) Measuring rehabilitation outcomes Comparison of Admission and Discharge scores (NPDS & HoNOS-ABI combined) 60 50 40 30 20 10 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 Admission NPDS NPDS and HoNos and HoNOS Discharge NPDS NPDS and HoNOS and HoNOS Rackstraw et al. Rackstraw A preliminary et al. A investigation preliminary inves/ga/on of the use of of a the basket use of a of basket outcome of outcome measures measures within a within rehabilitation a rehabilita/on service service for adults for adults diagnosed diagnosed with HIV-related neurological disorders. with HIV related Abstract neurological 5.8, 10th disorders. AIDS Impact Abstract Conference, 5.8, 10 th AIDS Santa Impact Fe, USA; Conference, September, Santa Fe, 2011 USA; September, 2011

Our Multi-Disciplinary Team. Our multi-disciplinary team is led by our Medical Director, Dr. Simon Rackstraw, a world renowned HIV consultant. The team consists of: HIV liaison psychiatry, junior medical staff, nursing (RMN, RGN), rehabilitation assistants, occupational therapy, physiotherapy, speech and language therapy, neuropsychology, dietetics, social care and chaplaincy. Our Facilities We are able to provide patients with a community based rehabilitation for a real life experience. Occupational therapists are trained to assess impairments in physical, cognitive or psychological domains. Difficulties arising from HAND may present challenges to a person in understanding their impairments and developing compensatory strategies. We draw on our dual training to investigate the performance of roles and activities, enabling people to facilitate recovery and manage barriers. At Mildmay using real-world environments wherever possible, contextualises assessment. Input can help to increase people s independence and satisfaction in all aspects of life. Social work is a professional discipline which works within a multidisciplinary team, to play a key role in the support adults and families with neurological conditions stemming from HIV. We enable patients to take control of and to improve their lives in conditions where their security, safety or ability to participate in civic life maybe restricted. Dietetic support is key for the following reasons: We optimise nutrition status, immunity and overall well being and prevent the development of specific nutrient deficiencies. We prevent loss of body weight and lean body mass and correct any losses, which could otherwise adversely impact a patient s physical rehab programme, and maximise the effectiveness of medical and pharmacological treatments. Speech and Language Therapy provides assessment and management of patients speech, language, swallow and cognitive communication, with a particular focus on managing cognition. At least 75% of referred patients present with HAND. The Speech Therapist also benefits from a supportive team of volunteers and close MDT liaison to provide weekly singing and communication/activity groups. These groups enable patients impairment or functional goals to be evaluated in a setting that enhances their wellbeing, and provides peer support. The merits of music for neurological rehab have been well documented. Clinical psychology provides comprehensive neuropsychological assessment (e.g. RBANS) to assess for cognitive decline associated with HIV (HAND). A rehabilitation group (executive function) is run weekly, focusing on psycho-education and management of cognitive difficulties. Psychological support is also offered to individuals who require support around issues of adjustment, adherence and mental health.

Inpatient Services Day Service Unit As part of the Inpatient programme, there is access to all services on offer within Day Service Unit. A structured pathway of continued rehabilitation enables clients to fulfil and maintain their maximum potential within the community. Our integrated team develops goal orientated plans which seek to maximise independence, promote skill acquisition and build confidence. The programme can strengthen abilities and promote better maintenance of physical, psychological, cognitive and emotional well being within the community. This can lead to improved ability to use and be part of community services, and reduction in incidences of readmission to hospital due to non-adherence. Mildmay offers a range of inpatient services for people living with HIV. Inpatients can also access additional activities provided by our Day Service Unit, including art, music and horticultural therapy. Nursing and medical care is provided 24 hours a day. All patients arriving at Mildmay are encouraged to be involved in their own goal setting. Care plans are formulated on an ongoing basis, taking into account the wishes of the patient and the expectations of the referring clinician. Mildmay s approach includes a variety of clinical and social assessments and tailored interventions by its multidisciplinary team.

Referrals & Access to Mildmay If you have a patient that you believe may benefit from accessing Mildmay Services, please call our referral hotline in the first instance. Tel No: 020 7613 6347 We currently have NHS contracts with most of the Clinical Commissioning Groups within the M25. Admissions, or access to day services are usually agreed with the HIV Clinical Nurse Specialist within the CCG or in their absence, a local commissioner. If you are not aware of a contract that your CCG may have with Mildmay, then we request that you contact us directly. We have introduced processes to work with and on behalf of you, to help secure funding (in the form of an Individual Funding Request) with your CCG. These can include locating your contact with the IFR office, undertaking a full pre-admission assessment and completing the paperwork for the funding process. For further information, please contact the referral hotline 020 7613 6347 (during office hours, answering machine outside of office hours) or email: referralenquiries@mildmay.org PRIVATE AND CONFIDENTIAL REFERRAL FORM Patient Name Date of referral Date of Birth Post Code HIV Consultant Acute Centre CNS Contact Number Date of HIV diagnosis Recent CD4 Date Nadir CD4 Date Stage of HIV A B C Recent VL Date Recent Issues inc. HIV-related illnesses, admissions and management. Psychiatric, Drug and Alcohol etc Other Past Medical History inc. HIV-related, Psychiatric, Medical, Drug and Alcohol issues etc. Current ARV s (please include date started) Other current medications Allergies Recent investigation results (inc brain imaging) Resuscitation Status Date of DNR decision What discussions have taken place regarding patient s prognosis? Name of Referrer Signature. Position.Date.. Contact Number/Bleep.Ward/Clinic.

Mildmay 19 Tabernacle Gardens London E2 7DZ Patrons: Dame Judi Dench Sir Cliff Richard fold here www.mildmay.org Registered Chariry: 292058 Affix stamp here Mildmay UK Hospital Referrals 19 Tabernacle Gardens London E2 7DZ