Care-Plus Tower Hamlets

1. Care-Plus Tower Hamlets Supporting carers looking after people with end stage heart failure Lyn Middleton

2. 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’.

3. 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.

4. 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.

5. 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

6. 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?

7. 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?

8. 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

9. 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

10. 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

11. 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

12. 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)

13. 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.

14. 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.

15. NYHA Heart Failure Classification Stage 3 or 4 =End of Life stage or 6-12 months

16. 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

17. 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

18. -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

19. Case Audit Outcomes-May 2009 • 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

20. 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

21. 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: enquiries@carerscentretowerhamlets.org.uk

22. Any Questions?