EVOLVE Hospice volunteers supporting those with MND and cognitive change

1. EVOLVE Hospice volunteers supporting those with MND and cognitive change Marjolein Cleaver, Occupational Therapist

2. What is EVOLVE? 18 month project by LOROS Hospice in Leicester funded by St James Place Charitable Foundation through Hospice UK Aim of project: • to support patients with MND-FTD to engage in meaningful activity at home • Goal setting (GAS) with patients and volunteer support to work towards these goals • Regular short respite for carers

3. The idea… “There was only a small number of volunteers that had little experience of working with patients with complex needs. The combination of working with the physical and cognitive issues and the lack of services to support both patient and family was a huge challenge, especially when trying to provide the service in the community. The lack of  services and support for this demanding patient group was of  great concern to me and a gap in service that needed to be filled” Andrew Lowden, OT

5. Referral pathway Hospice hosts the fortnightly MND MDT for the county; including: MND Clinical Specialist Nurses, Home Enteral Dietician, Community Integrated Neurology Team (OT, Physio and dietetics), hospice consultants and junior doctors, MND specialist OT, counselling, ventilation specialist nurse and volunteer services like home visiting and MNDA. Referrals were kept internal to organisation and partners to keep the process simple.

6. Referral criteria • Under the care of MND MDT • Diagnosis of MND • Completed IPOS (part of OACC suite) • Edinburgh Cognitive and Behavioural ALS Screen (ECAS) score 105 or less, or significant cognitive changes • Living at home

7. EVOLVE process • Following referral, contact was made by project lead to patient and family • Home assessment: goal setting (GAS), risk assessment and discussion about service • Volunteer introduction home visit • Volunteer visits with long arm supervision • Regular follow up by project lead • Evaluation

8. Total referrals received: 15 Referral • Contacted: 11 • Not Contacted: • 3 died before project was live • 1 inappropriate referral Contact • Assessed at home: 7 • Not Assessed: • 1 declined over the phone • 1 declined via staff member • 2 lack of volunteer capacity Assessment • Received volunteer visits: 3 • Not receiving a volunteer • Declined: 1 • Moved to a nursing home and service no longer required: 1 • Difficulty assigning a volunteer due to toileting needs: 1 • Admitted to LOROS ward before a volunteer was assigned: 1 Volunteer

9. Goal Attainment • Each patient had, with support, identified goals. These were walking/ going outdoors, gardening and painting/ artwork. • A few weeks into each volunteer’s visits it was apparent patients were not working towards their goals but enjoying the time spent with volunteers, despite being offered several different ways to engage in their set goals. • Reasons for this remained unclear as patients not able to express why they declined taking part in their chosen activities. Often the patients would request something to take place ‘next time’ to say the same again the following week.

10. Volunteer visits • In total 68 volunteer visits provided by three volunteers • A total of 226 hours providing face-to-face contact and carer respite “On visiting [patient] we talked about his early life and family. We looked and talked through photo albums from very young boy to having the grandchildren” (volunteer) “A year ago when he could do that but now he wouldn’t even know how to turn a page, he can’t do that. She (volunteer) used to sit with him and they used to talk for ages I don’t know what they find to talk about but they did.” (carer)

11. Evaluation • Patients: invited to take part in interview at 3 months • Carers: amended Zarit Burden Interview (Zarit, Reever and Bach-Peterson 1980), phone follow up and interview at 3 months • Volunteers: informal interview before starting, questionnaires throughout and a focus group at end of project

12. Lessons learnt • Barriers to allocating some patients were geography (no volunteer available in the area) and personal care (volunteers unable to support with toileting). • Importance of readiness and time. For some, time ran out before the assessment and volunteer allocation process was complete. For others, ‘not yet’ or ‘when things get worse’ were common reasons for not accepting a volunteer visitor.

13. Lessons learnt • Volunteers can support complex patients - and enjoy it! “That my time has been given to someone who appreciates it, whatever their situation, in a small way” (volunteer) “ Giving my time enables the family to have space from the dedication of caring for loved ones” (volunteer) • Volunteers really value training with a practical application

14. Lessons learnt • Carers valued the respite to do their own thing but equally valued the emotional support offered by volunteers. Two carers reported having shared things with the volunteer they did not share with family. “She is very supportive… very important from a carer’s point of view to have somebody that will just listen really. … there is never an opportunity to say ‘I feel like this’ or ‘I feel like that’ and when I am with [volunteer] there’s a little bit of that to share.” (carer)

15. Thank you for your attention MarjoleinCleaver@loros.co.uk homevisiting@loros.co.uk

16. References and background information (1) • Addington-Hall, J. and Hunt, K. (2012) Non-cancer patients as an under-served group. In ‘A Public Health Perspective on End of Life Care’. ed. By Cohen, J. and Deliens, L. Oxford: Oxford University Press. • Boa, S.; Duncan, E.; Haraldsdottir, E. and Wyke, S. (2018) ‘Patient-centred goal setting in a hospice: a comparative case study of how health practitioners understand and use goal setting in practice’. International Journal of Palliative Nursing 24(3), 115-122. • Chiao, C.Y., Wu, H.S., and Hsiao, C.Y. (2015) ‘Caregiver burden for informal caregivers of patients with dementia: A systematic review’. International Council of Nurses, 340 – 350. • Kiresuk, T., and Sherman, R. (1968) ‘Goal attainment scaling: a general method of evaluating comprehensive mental health programmes’. Community Mental Health Journal 4, 443-453.

17. References and background information (2) • Morris, S.M., Payne, S., Ockenden, N., and Hill, M. (2015) ‘Hospice volunteers: bridging the gap to the community?’. Health and Social Care in the Community, 1-10. • Naylor, C.; Mundle, C.; Weaks, L.; Buck, D. (2013) Volunteering in health and care; securing a sustainable future. London: The Kings Fund. • Tiberini, R., and Richardson, H. (2015) Rehabilitative Palliative Care – Enabling people to live fully until they die. London: Hospice UK. • Witt, J., Murtagh, F.E.M., de Wolf-Linder, S., Higginson, I.J., Daveson, B.A. (2013) Introducing the Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures - A Brief Introduction. London: King’s College. • Zarit, S. H.; Reever, K. E. and Back-Peterson, J. (1980) ‘Relatives of the impaired elderly: correlates of feelings of burden’. The Gerontologist, 20, 649-655.