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STROKE STUDY DAY. CARERS NEEDS, AND SUPPORT SERVICES. “Listening to the views of Users and their Carers is an effective way of making sure services meet needs” National Framework Document November 2002. CARERS’ SURVEY. DAVID HALL EX-CARER. Introduction. Background David Hall
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STROKE STUDY DAY CARERS NEEDS, AND SUPPORT SERVICES “Listening to the views of Users and their Carers is an effective way of making sure services meet needs” National Framework Document November 2002 CARERS’ SURVEY DAVID HALLEX-CARER
Introduction Background • David Hall Carer Survey – Headline Results • Susan Yemm Redesigning Community Services • Jill Kearsley
PERSONAL CARER BACKGROUND AND PATHWAY January 1997 Wife suffered brain haemorrhage October 1997 Entered Carer Politics October 2000 NSF for Old People was published 27 October 2000 County Stroke Group set up STROKE ACTION PLAN AIMS Prevention Immediate Care Rehabilitation Long Term Care 17 April 2001 Attended my first Stroke Group meeting
23rd October, 2001 – Stroke Audit Steering Group set up • STEERING GROUP AIMS: • Develop Registers • Audit Secondary Prevention of Stroke • Audit Management of Stroke patients • Audit on-going support for more disabled patients • Conduct a Carers Survey
CARERS SURVEY TARGET: All the Carers of Stroke Patients in the County AIMS:To establish the range and quality of Services provided for the Carers of Stroke Patients from:- The Health Service Social Services SURVEY OBJECTIVES: To establish the number of carers of stroke patients in the County To determine the level of disability of stroke patients To determine the level of Health Service input To compare this with what is or should be available To determine the level of Social Services input To compare this with what is or should be available
Steering Group engaged the help of the R & D Unit June 2002 Preparatory work in refining tool September 2002 Focus Group convened to test tool October 2002 Questionnaire further refine November 2002 Pilot Group established February 2003 Pilot sent out March 2003 Results assessed June 2003 Decision made to mount a countywide survey February 2004 Presented to Ethics Committee A survey in Gloucestershire of carers of people who have suffered a stroke Rec reference number 03/144G January 2005 Survey Mounted David HallEx CarerMember of Stroke Group30th November, 2005
“It is a comfort to know that more consideration is being given to the needs of carers. It is a difficult & often lonely job & we need all the help we can get just to keep going. Thank you!” (Quote from survey) Stroke Carers SurveyHeadline results Susan Yemm January 2005 Full report : www.glospccag.nhs.uk
Reaching the Carer of Stroke Survivors • 3230 (58%) Gloucestershire Stroke patients mailed Carer survey pack to pass to their main carer Stroke before October 2004 • 57 of the 84 Gloucestershire GP practices took part • 888 (28% of mailing) carers returned questionnaire (2% of all carers in Gloucestershire – ONS 2001 census) • Quantitative, some qualitative elements • Personal Details – carer demographics • Severity of Disability – care needed by stroke survivor • Your role as a carer – hours, information, help • Respite care, taking a break – couple of hours / days
Carer Age & Gender 7 out of 10 carers are female Average age of a carer is 65.5 years • Almost 70% of the caring is by carers aged over 60 years Stroke Carer Demographics • Employment • Almost 3/4 (73%) of carers are not in paid employment • 1 in 8 carers gave up work to care • How long a carer? • Majority of carers (58%) for less than 5 years • 1 in 100 for 25+ years • Relationship to stroke survivor • 70% are caring for their spouse • 25% for an immediate family member • 80% live with the person for whom they care • 63% care for 7 days a week for 4 or more hours a day
Stroke Survivor Disability • 55% over 75 years Co-morbidity is an issue – extent not known e.g. Osteoporosis, Dementia, Diabetes, CHD, Arthritis • Ability across full range of personal & domestic routines Personal Care Bathing /showering Food /drink Going to the toilet Mobility Household Matters Communication & Memory
Eligibility Criteria – Assessment Framework Able Would NOT have indicated that they were unable or needed help with any Care Services will be provided Interpretation of framework approximates the threshold into which a stroke patient might fall; a measure of carer dependency Critical Substantial Moderate Low
Level of disability “By 6 months over half of stroke survivors will need some help with activities of daily living. 15% will have communication impairments and 53% motor weakness…” RCP National Clinical Guidelines for Stroke 2004 • Overall 73% with critical or substantial care needs • Their area of need Communication & Memory 61% • Mobility 52% • Household Matters 52% • Bathing /showering 43% • Food /drink 31% • Going to the toilet 28% • Personal Care 19%
Carer Support • 56% of carers have no help with their caring role from family, friends, organisations • Support from Health and SS professionals • Around 90% of contact is • “as required” and “not at all” • Most regular contact seen in Home care Community Nurse
Regular weekly breaks Opportunities for Taking a break • Only 1 in 3 • Day Centre, Social Club, Day hospital, Rehab • Pop out for a couple of hours 42% could pop out rely overwhelmingly on family members • Get away for a couple of days • Almost half have had break since becoming a carer • 70% are regular annual breaks
How prepared are carers for the caring role? • 6 out of 10 felt equipped, knew how to Give medicines Help with toilet Cope with special feeding needs Transfer in/out of bed & chair • Most felt they knew too little How to get help if finding it difficult to cope Help with legal matters • Poor on information – stroke, support groups • Stroke Information Booklet – roll out across the county
Assessments Care plan from Social Service – Stroke survivor • 3 out of 4 do not have a Care plan • Those with a care plan have critical care needs Carers Needs Assessment • 7 out of 8 carers have NOT been assessed • 1 in 3 were assessed before 2003 Carers of Stroke Survivors Referrals to SS Action for All - encourage & assist with referral
REDESIGNINGCOMMUNITY SERVICES Jill Kearsley
SINGLE AND MULTI-AGENCY SERVICES Specialist Day Care for people with Dementia Access to Nursing/ Residential Care Extra Care Sheltered Housing Falls Clinics Dom Care/ Rehab DisabledFacilitiesGrant IntermediateCare SEPTEMBER 2005 3207 New cases referred to Social Services 8959 SU’s receiving care Stroke Rehab Equipment Financial Advice OT Social Work Teams in Hospitals Sensory Team- SU‘s withVisual and Hearing Impairment Meals on Wheels Respite Care
DEMOGRAPHIC GROWTHWhat does this mean for services? Proportion of population aged 85+ in Gloucestershire set to increase byan estimated 21.05% by 2010 (an increase of 2,800 people) Sources:E & W based on 2003 projection from Government Actuaries DeptGloucestershire based on 2003 projection from AGW
REDESIGNING COMMUNITY SERVICES In order to respond to: - Government policies - Demographic growth - Changes in society * People are less likely to be part of a close-knit family * People are living longer resulting in a greater demand on services * More emphasis on preventative services * Working closely with hospitals in preventing unnecessary hospital admissions and aiding timely hospital discharge - Budget pressures - Eligibility Criteria (Provide appropriate services for the most vulnerable people with ‘substantial’ or ‘critical’ need in line with Fair Access to Care Services) Social Services have had to develop and redesign services whichinclude: Rehab/Day Care Intermediate Care Rehab/Home Care Closer working with Voluntary Sector
INTERMEDIATE CARE SERVICES Cheltenham & Tewkesbury Locality - Ashley Intermediate Care Centre • 15 bed intermediate care centre which is a joint venture between Care Home, PCT and Social Services providing services users with up to 6 weeks rehabilitative care • Aim to make residents as independent as possible after a spell in hospital so that they feel fully confident on returning home Gloucester & Forest Locality – Great Western Court • 12 intermediate care beds plus 10 flexi use beds which aims to make residents as independent as possible so that they can return to their own home Townsend House • 4 intermediate care beds Cotswold & Stroud Locality • Cotswold & Stroud have focussed their intermediate care services on rehabilitation for Service Users in their own homes, and also work very closely with the Community Hospitals
REDESIGNING SERVICES Prestbury Centre • New rehabilitation wing opened November 2004 with services focussing on neurological conditions • Currently two rolling programmes: a) Life After Stroke programme for stroke survivors and their carers over a period of seven weeks b) Falls Education Programme over a period of seven weeks two sessions per week. Helps to reduce hospital admissions. Multi-agency in-put Tewkesbury Day Centre • Specialist memory impairment day care service developed in conjunction with Gloucestershire Partnership Trust once a week with plans for expansion if required
EXTRA CARE SHELTERED HOUSING • Provide accommodation to enable people to live independently in the community Department of Health £4m to New Build in Tewkesbury Joint Venture with: Social Services Cheltenham and Tewkesbury PCT Tewkesbury Borough Council Hanover Housing Association • Capacity for up to 180 older people • 24 hour waking care • Latest sensory/SMART technology • Cinema
WORKING IN PARTNERSHIP No one organisation can deliver Crime & Disorder Voluntary Sector Develop relation-ships across theprivate andpublic sector to expand businesses tomeet evergrowing demands Citizen’s Advice Bureau Social Services Private Sector Service Users/Patients SupportingPeople Nursing CareResidential CareDom CareDay Care Primary Care Acute Sector County Council Borough Councils Support Groupseg Parkinson’s,Alzheimers Housing,Extra ShelteredHousing