How Hywel Dda University Health Board set up their end of life care volunteering support

Journey Report

Statement about Hywel Dda University Health Board

Hywel Dda University Health Board plans and provides NHS healthcare services for Carmarthenshire, Ceredigion, Pembrokeshire, and bordering counties which accounts for a quarter of the landmass of Wales - in partnership with three local authorities and public, private and third sector colleagues, including volunteers, through:

∙ Four main hospitals: Bronglais General in Aberystwyth, Glangwili General in Carmarthen, Prince Philip in Llanelli and Withybush General in Haverfordwest.

∙ Five community hospitals: Amman Valley and Llandovery in Carmarthenshire; Tregaron in Ceredigion; and Tenby and South Pembrokeshire Hospital Health and Social Care Resource Centre in Pembrokeshire.

∙ Two integrated care centres, Aberaeron and Cardigan in Ceredigion.

∙ 48 general practices (four of which are Health Board managed practices), 49 dental practices (including three orthodontics), 98 community pharmacies, 44 general ophthalmic practices (44 providing Eye Health Examination Wales and 30 low vision services), domiciliary only providers and health centres.

∙ Numerous locations providing mental health and learning disabilities service

Total population is estimated at 387,300.

Organisations Values

‘’Working Together to be the Best we can be, striving to develop and deliver Excellent Services and putting people at the Heart of everything we do’’

Palliative Care Team – The Ceredigion Specialist Palliative Care Team gives specialist information and supportive care to people with an advanced, progressive life-limiting condition. We are able to see patients in hospital, in their home including care home setting, and in our outpatient clinics.

Our service includes:

• Consultant

• Specialist Nurses

• Occupational Therapy

• Bereavement and Psychological support

• Art Therapy

• Hospice at Home (Healthcare support workers and volunteers)

We work closely with GPs, community nurses, hospital doctors and nurses, as well as other local health, social care and third sector teams.

Reasons for Hywel Health Board to set up an EoLC Service

Palliative Care CNS Team Leader experienced an encounter with a patient on a ward round who held her hand; Inspired by the power of giving someone’s time she was motivated to develop new volunteer Companion opportunities and to name the service - ‘llaw yn llaw’ /hand in hand.

Sharing thoughts for a volunteer Companion service with colleagues in acute care received their ‘’100% support’’ and the recognition that for both staff and their patients, the service would give ‘peace of mind’ knowing someone is there for the patient, providing comfort and company.

Companionship at the end of life from specially trained volunteers would enable staff to focus on continued excellent clinical care and concentrate on the medical priorities, feeling reassured that a volunteer is giving time and comfort to the patients in their last days/hours of life.

Issue to be Resolved

That no one should die alone and that everyone should have company, if they wish this, during their time in hospital.

‘’Staff on the wards do not always have the amount of time needed to sit and chat with patients, even if patients have visitors, the day can seem long, lonely and overwhelming. Having a companion volunteer service gives staff peace of mind knowing that people are not alone. It helps us to enhance and improve the care we give to our patients at the end of life. It will also relieve pressure on staff and improve staff wellbeing”.

Ward Sister

Actions taken to address issues

Consulted with key clinical staff, Third sector services and Health Board County Manager who agreed to the proposal and need for the new service.

Developed a Steering Group

Key stakeholders included internal and external representation from: Consultants, CNS, Third sector, Volunteering for Health Manager, Health Board County Manager, Helpforce representative, Hospital Dr and Third sector facilitators.

Due to the pandemic the original project plan was reviewed and adapted with the decision to deliver a virtual companion volunteer service until such a time when it would be possible to re-introduce face to face services on the wards. The pilot site changed from the acute site to community hospital and a Health Care Support Worker was identified to be the main point of contact to identify and facilitate referrals, helping patients in getting set up for the call and checking in with them afterwards.

Following contact with the Health Board, Third Sector Integration Facilitators (whose workload had reduced due to COVID) were identified to support the project. Their experiences of working in health, social and third sector proved invaluable with progressing the service, this included engaging with volunteers, identifying sources of IT training for volunteers, arranging training sessions virtually and developing promotional material for the service.

Volunteer Recruitment - Volunteers are recruited via local third sector Hospice at Home (H@H) partners and Health Board Volunteering for Health scheme, plus other routes. Initial promotion included a drop in coffee and chat information session for prospective volunteers, where an inspiring training video was shown. The EoLC Volunteering Project Lead meets individually with prospective volunteers to discuss the role and manage their expectations.

Volunteer Training and Support

Volunteers complete comprehensive Health Board volunteer induction training and also bespoke EoLC training.

Palliative and end of life care sessions are delivered by the Palliative Care Team; self-care and resilience sessions are delivered by the Health Board Bereavement and Psychological Care Team; Companion Volunteers also have access to one to one and group supervision via Health Board’s Bereavement and Psychological Care Team, which includes an Arts Psychotherapist. They are offered one to one sessions with the project lead and Volunteering for Health Manager.

One of the team speaks to volunteers at the beginning and end of each session, for real time support and reflection. The Project Lead’s meetings with individual volunteers provides opportunities for volunteers to share any concerns, feedback about their experiences in the role and to suggest ideas to improve the service; this approach has proved to be invaluable in influencing the virtual support that can be offered to patients. For example, one volunteer shared their idea of taking patients on virtual walks to the seaside or in the garden to look at flowers and birds.

Digital Training

• For years the HB have been using iPads with patients at home, nurses, bereavement counsellors, consultant, arts psychotherapist and have decided to extend this to volunteers

• Companion volunteers have been supported to become Digital Champions able to help patients and their families to overcome barriers to using technology in this way

Profile of volunteers

• Volunteers age from 16 - 75 plus

• Had to get special HB approval for over 70s to be involved on this project

“Before the visit I had said ‘if I manage to put a smile on Margaret’s face I’ll feel that I’ve made a difference today’.When I started my FaceTime call, Margaret was not very responsive for the first 5 minutes. I quickly established that she had a love of animals so I asked if she would like to meet my dog to which she replied yes. I turned the screen and introduced my dog who looked directly into the screen, and then licked it. Immediately, this put a very big smile on Margaret’s face which was followed by a laugh. It was all that was needed and we then had a nice long chat and Margaret reminisced and told me a little about herself. I noticed that she was getting tired and brought the chat to an end by suggesting it was time for a cup of tea and cake. After the visit ended, I felt really good knowing I had put a smile on Margaret’s face.’’

Companion Volunteer - Tregaron Hospital via Facetime

Key challenges and achievements

• The limitations of virtual visits for patients nearing end of life

• Adapting service operationally to meet needs of patients and staff, in the light of restrictions, imposed by Covid 19

• The Health Board appointed Family Liason Officers to enable connection between patients and their carers/families. This reduced the demand for the volunteer service

• Low uptake of the service

• Activity monitoring can be time consuming and seem of very limited benefit when the amount of activity taking place is very low

• Maintaining volunteer motivation to remain engaged with service in spite of the difficulties and challenges of the pandemic

‘We have got more than what we started with; It's been a journey for us and for volunteers who have grown and learned a lot too’’ (Volunteering for Health Officer)

For example:

• EoLC service now has over 10 volunteers who are trained and continue to feel motivated to undertake Companion roles

• Increased use of ipads to enable virtual support, when needed

• Received a grant to purchase virtual reality headsets and will enable volunteer support for this, to sit with patients, help with use of equipment and discuss their experience

• Received approval that the EoL Companion project can begin to operate face to face again and feel optimistic that referrals will be increased as a result

Next Steps

• The service is needed ‘’more than ever now’’ due to the increasing number of referrals to specialist palliative care

• Volunteers already have polo tops and ID badges, now thinking of embroidering the ‘’hand in hand’’ logo onto polo shirts - recognising importance of physical presence and touch

• Rolling out the model throughout the Health Board

• Liaise with comms team who will develop promotional materials to publicise the service

• Vision for developing an integrated volunteering service, connecting across primary and secondary care

For the full report please download the attached PDF

For more End of Life resources please visit group page

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