Transcript Care-Plus Tower Hamlets

Care-Plus Tower Hamlets
Supporting carers looking after people with end stage
heart failure
Lyn Middleton
What is a Carer?
A Carer is someone who provides significant and substantial unpaid
help and support to a partner, child, relative, friend or neighbour who
could not manage without their help? This could be due to age,
physical or mental illness, addiction or disability.
Basically-the Carer is the person who manages 24/7
when all the professionals have ‘finished for the day’.
What is Care-Plus?
• 3 year research project funded by the Kings Fund
‘Partners in Health’ programme
• Cross-sectoral partnership between the Carers Centre
Tower Hamlets, LB Tower Hamlets Adults Social
Services and Tower Hamlets PCT
• Provides support services for carers (aged 18+) caring
for patients suffering from end stage heart failure (NYHA
stages 3 & 4) in Tower Hamlets.
Aim
To demonstrate that investment in providing better quality
services for the carer leads to significant, tangible &
measurable benefits for the patient, the carer, Local
Authority social care and NHS Primary & Acute Care
commissioners.
Why Did We Need Care-Plus?
• Poor access to EOLC for patients with anything other
than a cancer diagnosis
• Changes in national social policy context
• Escalating costs of all service provision means becoming
better at targeting need
• Personalisation, choice & control agenda
• Patients / families want to make most of final months of
life
• No time to waste waiting for numerous assessments
• Retain independence, mobility & quality of life for as long
as possible
• We don’t get 2nd chances to get it right in EOLC
Care-Plus research was based upon two main themes
and set out to answer the following:
1. Does providing better co-ordination of care enable
patients and carers to enact their own choices for EOLC
(e.g Preferred Place of Care or PPC) & help them to
better control and improve the end of life experience?
2. Does the provision of a higher level of carer support
services & earlier intervention
– prevent individual difficulties from reaching crisis point
– allow health and social care providers to forecast
future usage
– plan and deliver better services to those who need
them most
– and/or reduce the need to use more intensive /
expensive health and social care services at a later
stage i.e. emergency bed days, emergency respite for
the patient and/or carer, avoid caring role breakdown?
The Benefits (1)
For the patient & carer:
- Improved Choice & Control
- Improved Quality of Life
- Fast track access to services
- Better quality of support services at the time they are
needed
- Single point of access - one contact number for
everything
- Early intervention & advocacy avoids escalation
- Person-centred delivery i.e. What is needed not ‘what
we can offer’
- A flexible & responsive service geared towards their
individual needs
The Benefits (2)
For Commissioners:
- integrated approach to service delivery addressing
all health & social care needs
- flexible & responsive service
- tailored to individual need
- single point of access
- significant cost savings on emergency bed day
usage
- enable more effective forward planning of
services & budgets
- improved communication between service
providers, patient & carers
How Did We Achieve This?
Provided an enhanced Carer Support service tailored to specific needs
of carers and patients, including:
• A community based co-ordinator liaising / negotiating fast track
access protocols to health & social care services
• Holistic assessment of carers support needs
• Early intervention & advocacy in any area
• 1:1 Emotional support
• Advice & information
• Home based delivery organised around patient /carer needs
• Dedicated Carers Welfare Benefits service
• Stress management –Counselling, complementary therapies
• Carers respite breaks
• Financial support (emergency grants fund, applications to charitable
funders)
• Bereavement planning & post bereavement support
• Carers Direct Payments assessments
Carers/Patients Experience
• “Generally I think it is the knowledge of knowing somebody is there
to assist you, makes you feel like you are not on your own, and you
can do it.”
• “Yes, he was so patient and helpful . . . We feel comfortable with
him and feel we can talk to him about anything even if it’s of a
personal nature, things we wouldn’t even tell our GP.”
• “If I ever had a problem, [the Care Plus Coordinator] would be the
first person I would call. It is wonderful to know that he is at the end
of the phone.”
• “I can’t believe Tower Hamlets can afford this service, it has offered
us so much and has made both our lives so much easier.”
Source: Care-Plus Yr 2 Evaluation Report-Arup, Dec 2008
Professional’s Experience of Care-Plus
‘Health care professionals who have referred patients into the project
have reported that they have been freed up to carry out their primary
role and develop a more satisfactory relationship with patients around
medical need. Clinicians and professionals interviewed as a part of the
project overwhelmingly said that the service works extremely well and
that they have a great deal of confidence referring their patients to the
project ‘
(Source: LBTH Health Scrutiny Panel End of Life Care in Tower Hamlets report to
Cabinet, May 2009)
Funders Experience
June 2006
The Kings Fund said it would never work (but they didn’t tell us ) as
they wanted to see how we dealt with the challenges of providing a
person- centred service & that others could learn from our experiences.
May 2009
Kings Fund advised that Care-Plus evaluation report had been
submitted to NICE for consideration as a replicable model of service
delivery. The Kings Fund has never done this before.
Criteria for admission to Care-Plus
• the patient must live in Tower Hamlets,
• be suffering from End Stage Heart Failure -NYHA Stage
3 or 4 (see table)
• the carer must be aged over 18
• the referring cardiac consultant, GP or other health
professional must answer the ‘surprise question’ i.e.
“Would you be surprised if the patient is still alive in 12
months time?” If the answer is yes, the referral is
accepted.
NYHA Heart Failure Classification
Class
Patient Symptoms
Class I (Mild)
No limitation of physical activity. Ordinary physical activity
does not cause undue fatigue, palpitation, or dyspnoea
(shortness of breath).
Class II (Mild)
Slight limitation of physical activity. Comfortable at rest, but
ordinary physical activity results in fatigue, palpitation, or
dyspnoea.
Class III
(Moderate)
Marked limitation of physical activity. Comfortable at rest,
but less than ordinary activity causes fatigue, palpitation, or
dyspnoea.
Class IV (Severe)
Unable to carry out any physical activity without discomfort.
Symptoms of cardiac insufficiency at rest. If any physical
activity is undertaken discomfort is increased.
Stage 3 or 4 =End of Life stage or 6-12 months
The Evidence to Date
Care-Plus Independent Evaluation Report-YR 2-Arup
http://static.carers.org/files/care-plus-yr-2-evaluation-report-4246.pdf
NAO Patient /Carer Survey-Nov 2008
http://static.carers.org/files/nao-arup-patientcarersurvey-4126.pdf
NAO End of Life Care in England Report-Nov 2008
http://static.carers.org/files/nao-end-of-life-full-report-nov-08-4125.pdf
In practice, Care-Plus means:
- Referrals accepted by phone, fax & email, response time of 48 hrs to
contact carer
- Assessment ordinarily within 5 working days & outcomes reported back to
referrer as standard
- Home visits if desired as standard
- Referrals e.g OT, social care teams, Carers Handyman Service, Carers
Relief Service, Link Age Plus, St Hilda’s, housing providers
- Feedback of patient/carer experiences enable providers to address issues
- Explanation of patient/carer choices and entitlements in lay terms
- Assessment of Carers one-off Direct Payments
- Liaison between all services providing health & social care services
including GP, District & Heart Failure nurse team, hospital teams & ward
staff, St Joseph’s Hospice, Palliative Care teams, Cardiac Outpatients, Out
of Hours services
- Debt / welfare benefits/ financial management support including unlocking
occupational pensions for carers forced to give up work to care
-Temporary equipment loan: wheelchair, mobile phones
- Priority access to emergency Samaritan grants fund
- Access to services at the time they are needed. i.e. Defined pathways and
protocols where an earlier and more intensive intervention can be shown to be
beneficial to patient and/or carer providing fast track referral, assessment and
response
- Single point of access & information for carers & professionals
- Community based co-ordinator whose role it is to link with and bring together
health & social care services in a way that benefits patient, carer and family
- Better design and co-ordination of services i.e. identifying & providing what is
needed by people during EOLC rather than ‘this is what we offer’,
- Independent advocacy for patient and carers to challenge the barriers in existing
systems & provide support when things go wrong
- A range of tailored services to support and help the carer to manage in their
caring role for as long as they feel able or want to do so.
- Improved communication between professionals, patient, carer and family,
- A voluntary sector provider able to flex & bend according to service user need
Case Audit Outcomes-May 2009
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85 unpaid carers caring for 73 patients
1510 contacts –carers / patients or professionals
1067 hours of casework
10 deaths to date - 8 at home, 2 in hospital
88 emergency bed days used for 10 patients - total cost =£220,000 THPCT
assumes 2 unplanned admissions in last year of life i.e. 37 days @ £2500
per day or £92,500 per patient
34 patients still alive after 12 months or more on Care-Plus
4 inappropriate referrals-3 non heart failure diagnosis, 1 under 18yrs
4 initially declined service & changed their decision
2 complaints re hospital EOLC, 1 sent on to Healthcare Commission
Almost every case involved housing issues-repairs, adaptations, medical
transfers, bidding for properties, parking, access ramps, overcrowding,
tenancy inheritance
Grant applications have provided fridge/freezers, cookers, beds & bedding,
driving lessons, wheelchairs, portable nebulisers, washing machines, used
cars, LBTH Leisure Cards
Welfare Benefits claimed in 85% of cases
Service Costs
Heart Failure only -£136k per year & 3 fte staff
or
the cost of 54.4 emergency bed days
Heart Failure & COPD - £207k per year & 5 fte staff
or
the cost of 82.8 emergency bed days
For more information contact:
Care-Plus Co-ordinator
Princess Royal Trust Carers Centre Tower Hamlets
21 Brayford Square
London
E1 0SG
Tel: 020 7790 1765
Fax: 020 7791 5575
www.carerscentretowerhamlets.org.uk
Email: [email protected]
Any Questions?