North Middlesex University Hospital George Marsh Centre

Home Care Scheme For Patients With Sickle Cell Disease Started in 1998, due to “winter pressures” funding The service is so far Unique in the National Health Service Founder: - Dr Anne Yardumian Consultant Haematologist, NMUH - Penny Butler Enfield & Haringey HA

RED CELL TEAM Consultant Haematologists Paeds Haem Paediatricians ADULT Consultant Haematologists Paeds Haem Paediatricians Specialist Nurses Counsellors 5 WTE Day Unit nursing team Social Worker Housing Officer Benefit Officer

THE SCHEME OPERATES WITHIN A NETWORK HOME CARE SERVICES

RATIONALE Frequent hospital admissions, a model of care not appropriate for management of Sickle Cell Pain (Maxwell et al, 1999) Patients frequently spent >2 weeks in hospital (Yardumian, 1993) High incidence of SCD in Community served by NMUH Shift to different model of care in the best interest of patients with SCD Flexibility

HOW THE SYSTEM WORKS * Initial assessment by Consultant Hereafter - Referrals from Haematology team - Self referral Home Visits Frequency / duration of Home Visits When last used service? Priority of Visits How recently in hospital?

HOME CARE FLOW CHART Initial Assessment / Referral from Pts New Referral by Consultant Referral from Pts already on HC Scheme Admission Pack Drugs Protocols Check Record for:- Date of Discharge from Hospital Date last seen by HC team Arrange Home Visits Contact pts by phone Confirm date visits will be made (pts will be seen according to priority) Inform pts about possible delays If within normal limits Treat & advise accordingly During Visit Hx CVS Observation If in Doubt Contact Haem Team for advice - Refer pt for further assessment Admission if necessary - Documentations / GP Letter - Record on Pas - Referrals as necessary to SW, Housing / benefit ofiicer

Frequency And Duration of Home Visits ** Home Visits can take place: * For up to 5 Working days * Twice a day ( Ideally once a day last 2 days) ** Following discharge from hospital * Up to maximum of 3 days ** Further visits within 2 weeks (14 days) ** Intermittently 2 days per week up to 4 weeks

WHAT HAPPENS DURING HV? CLINICAL ASSESSMENT History Assess – general Locality / Severity of pain (Pain score) Medications BP / Pulse / Temp / O2 sats Blood Specimen Treatment Advice

Circumstances Where Hospital admission is Advisable Chest pain Moderate or high fever (at or above 38 degrees C) Any shortness of breath or difficulty breathing Abdominal pain Diarrhoea + Vomiting Severe headache, black out, Muscle weakness in one arm or leg Any symptoms not recognise or which are just different from usual bone and joint pains

PRIORITY OF PATIENTS FOR HOME CARE Users who have had no contact with either the home care service or admission to hospital for 4 weeks or more Users who have not used the home care service for more than 2 weeks and have not been admitted to hospital for more than 4 weeks Users who have had no contact with either the home care service or admission to hospital for 2 weeks or more Users for first three days of home care treatment who have been discharged from hospital Users who did not receive the maximum number of visits during their last course of home care.

BENEFITS TO PATIENTS Easy access to treatment Seen by specialists nurses everytime Early discharge from hospital Reduce risk of HAI (i.e MRSA etc..) Positive outlook to life / Opportunities :- - Studies / Training - Part - time jobs - Enjoyment of normal family & social life

BENEFIT TO THE TRUST Better use of resources Reduce waiting time in A&E dept Reduce number of bed days Trust able to treat other acutely ill pts, thus overall increase the number of pts treated in the hospital Staff become increasingly experienced / expert

SO … WHAT DID WE ACHIEVE? Number of admission by SCD pts significantly reduced Improve relationship between staff and service users Achievement of active users’ involvement and partnership (New NHS 1999) Flexibility Major improvement in pts’ QOL Scheme welcome by pts / relatives

IN THE USER’S WORDS …‘it helps me to relax and in between visits I can distract myself better at home, taking my mind off the pain’ ‘It makes my recovery a lot smoother … I am the mother of two small children and the thought of being separated form them used to affect my health’ ‘I find I do not need as many injections as I would in hospital’ ‘It has reduced the number of days off work’ ‘…it is a lifeline’

WHERE DO WE GO FROM HERE Increase service provision Late evening service Expand catchment's area Specialist nurses 7 WTE

THANK YOU Nasser Roheemun Specialist Nurse North Middlesex University Hospital nasser.roheemun@haringey.nhs.co.uk