1. Carers Needs Assessment A tool for use with End of Life patients. Emma Miller – Palliative Nurse Specialist

2. RATIONALE FOR A TOOL Studies show that 66% of End of Life patients would prefer to die in their own homes (DOH, 2011). Informal Carers are crucial to this wish being met (Jack et al, 2010). The lack of a dedicated carers assessment tool is evident – resulting in an ad-hoc and inconsistent approach by specialist nurses..and.. Unmet carers needs.

3. UNMET CARERS NEEDS – THE CONSEQUENCES Unaddressed carers burden has a significant impact on hospital admissions in end of life (Jack et al, 2010). Many carers experience huge financial burden often falling into debt - difficult to maintain employment. Unmet carers needs can impact on bereavement. Caring for a loved one can affect their health.

4. THE IMPACT ON CARERS HEALTH. The stress of caring can affect physical health - Fatigue. Exhaustion – Anxiety – Stress. Insomnia. High blood pressure. And mental well-being – Low mood - angry thoughts – negative thoughts. 40% of carers suffer from depression (RCGP, 2011). Difficulty communicating important issues.

5. DRIVERS FOR CHANGE Carers to be offered a comprehensive needs assessment throughout the patient’s journey (NICE, 2011, DOH, 2009). Carers should be offered support and be involved in decision making (DOH, 2009). Carers Strategy identifies the value of carers in health care (DOH, 2010).

6. SNAPSHOT AUDIT Community Macmillan Nurse Specialists conducted a small audit to determine the current carer support offered (And documented). 35 Patients records were examined. The majority (over 30) had SOME needs addressed. The aim of the tool’s implementation is to improve on the scope of assessment.

7. AUDIT RESULTS Illness discussed with carer (17) = 48% Prognosis communicated with carer (16) = 46% Physical health of carer (15 ) = 43% Mental Health of carer, (depression screen) (11) =31% Finances assessed (22) = 63% How is carer sleeping? (14) = 40% How is communication between carer and patient? (7) = 20% How is carer coping with the physical and emotional needs of the patient? (14) = 40% What are the main concerns of the carer? (15) = 43%

8. SUPPORTING EVIDENCE THE DEVELOPMENT AND IMPLEMENTATION OF AN ASSESSMENT TOOL COULD BE INSTRUMENTAL IN REDUCING CARER BURDEN AND ENHANCING QUALITY END OF LIFE CARE.

9. RESEARCH IDENTIFIES Effective carer needs assessment can contribute towards positive bereavement outcomes (Holdsworth et al, 2011). The use of an assessment tool as being a valid and reliable method of addressing care-giver burden in palliative care (Dumont et al,2008). The need to develop a suitable assessment tool for use in EOL care. Nurses should be using evidence-based best practice (Nursing and Midwifery Council, 2008).

10. IMPLEMENTING A TOOL COULD enable more effective and consistent carers needs assessment. Identify carers need for support and encourage signposting. Address issues of support/help and prevent negative carer outcomes. Help more patients stay in their preferred place of care for longer. Reduce hospital admissions.

11. THE PILOT With all new patients – the carers tool to be offered during first few visits. Either to be filled in if appropriate with the patient or to leave it with carer until next visit. Any issues to be noted using pathway and explored with carer in more depth.

12. THE PILOT Issues identifying carers unmet needs to be referred on as appropriate and as suggested by pathway. Documentation in patients’ notes to identify carers assessment completed (With carer’s permission). Carer to be reassessed after any interventions have taken place. Carer to be assessed regularly when the patient is on the GSF.

13. PLAN To test the tool in practice and review after 4 months (Jan 2013). If found to be useful then the plan is to disseminate to District nursing teams. 35 patients notes to be audited in Jan 2013 to measure any improvement in assessment and documentation of carers needs.

14. THE CARERS NEEDS ASSESSMENT TOOL Multi purpose – Resource; information for carers. Evidence based. Assesses practical, emotional and physical needs. Concise. Could be adapted to other areas of care.

15. AgencyContact details South Lakeland Carers www.slcarers.org.ukwww.slcarers.org.uk Furness Carers www.furnesscarers.co.ukwww.furnesscarers.co.uk Lonsdale District Carers (Lancaster City Council area) www.lonsdalecarers.co.ukwww.lonsdalecarers.co.uk 01539 815970 01229 822822 01524 833456 Age UK Barrow area South Lakes area Lancashire National Advice Line www.ageuk.ukwww.ageuk.uk 01229 831425 01539 728180 03003 031234 08001 696555 Macmillan Cancer Support National Advice Line www.macmillan.org.ukwww.macmillan.org.uk 08088 080000 Carers UK National Advice Line www.carers.orgwww.carers.org 08088 087777 Princess Royal Trust for Carers www.carersuk.org 08448 004361 Carers Direct www.nhs.uk/carersdirectwww.nhs.uk/carersdirect08088 020202 Crossroads Care www.crossroads.org.ukwww.crossroads.org.uk08454 500350 Cumbria County Council Adult Service http://www.cumbria.gov.uk/adultsocialcare/ Barrow Kendal Carers Lancashire (Lancashire County Council) www.lancashire.gov.ukwww.lancashire.gov.uk 01229 407444 01539 713377 03456 887113 Carers Allowance Unit08456 084321

16. Carers Needs Assessment Tool We recognise how difficult it can be to care for someone who cannot manage without help. This tool is to help and support you in this role. Q – Are you finding any of the following difficult?

17. IssuesYesNo Understanding the illness of the person you are caring for Coming to terms with their illness Coping with their treatment Coping with their physical needs Managing finances / insurance concerns / employment issues Discussing the illness and future with the person you are caring for Sleeping Your physical health Negative thoughts / low mood / angry feelings

18. Q – What are your main concerns? Q – What do you believe you need right now? Depression Screening Questions Q – During the last month have you often Felt hopeless, down or depressed Had little interest or pleasure in doing things

19. EFFECTS SO FAR... Following a month of the trial, many issues have been identified, especially a common theme of low mood/angry thoughts. Communication issues are also identified, which enables nurses to address the problems and access help for carers as needed. Carers have responded positively to the introduction of the tool and we look forward to it’s development.

20. Why do we need a tool? It will enable effective needs assessment of carers It may ease the traumatic journey for patients and carers at end of life. It may help end of life patients stay at home There are no other tools currently being used for carers so we are in a great position to positively influence our colleagues

21. THANK YOU FOR LISTENING ANY QUESTIONS?