Dorset Cancer Champions Board visit Lewis-Manning Hospice

Dorset Macmillan Advocacy’s Local Cancer Champions Board was pleased to be invited to hold their recent meeting at the Lewis-Manning Hospice.  Sue Higgins, Director of Nursing, gave board members and staff a tour of the facilities. Peer volunteer advocates could potentially support people affected by cancer to visit this and other hospices to enable them to make informed choices about their future care.  Hospice staff can also inform older cancer patients about the local advocacy service should they need additional support in the community.

Picture L to R

Jo Lee, Senior Macmillan Advocate, Help and Care, Graham Willetts, Chair – Dorset Cancer Champions Board, Keri Harrison, Access and Community Support Manager, Help and Care, Tracy Street, Macmillan Involvement Coordinator, Macmillan Cancer Support, Kathleen Gillett, Macmillan Project Coordinator, Help and Care

Sue Higgins writes:

Lewis-Manning Hospice is situated in Lilliput, Poole and benefits from delightful views over Poole Bay.  The hospice was re-opened in 2012 following a new-build and it continues to promote the needs of patients living with a life-limiting illness. The In-Patient Unit, which will be opening during this year in a phased approach, is complemented by Day Hospice Services, Physiotherapy and a Breathlessness and Lymphoedema Clinic. The work of our multi-disciplinary team includes:

• Widening access to supportive and palliative care services based on need not diagnosis, so that if Lewis-Manning can meet the needs of a patient with a diagnosis other than cancer, it will do so
• Ensuring equality of access to services for all who need them. No matter who you are or where you come from
• Treating every person and every day as special. Ensuring that each individual person knows they matter
• Ensuring appropriate information and support is available and accessible to the Lewis-Manning Community, so as to enable a patient and carers to take control of their lives, make informed choices and manage the impact of their diagnosis and treatment
• Providing high quality clinical and social support utilising the best of evidence based practice. By maintaining its independence Lewis-Manning is able to choose to provide the best quality and most appropriate range of supportive therapies
• Raising awareness of what living with a life-limiting illness means, through education and provision of information to the patient, their carers and the community as a whole
• Minimising anxiety and fear by accepting death as part of life and thereby enabling patients and their families to live in the moment and plan for their death. We use the Dorset-wide Advance Care Planning document to help patients through the many decisions
• Providing a range of services which enable individuals to live their lives to the full. Helping to control pain, help manage symptoms and adapt to change
• Developing, in partnership with others, high quality, holistic services in response to individual needs and aspirations, so that patients choose their own goals and Lewis-Manning works with others within the community to deliver them

To support this work a large number of volunteers help in a variety of ways at Lewis-Manning Hospice.  Some are volunteer drivers, some help patients during their Day Hospice or Clinic visit; others assist at the Art Group or Carers Group meeting.  The volunteers work alongside the multidisciplinary team comprising a doctor, nurses and physiotherapists.  Other healthcare professionals become involved when required depending on the patient’s needs throughout their time at Lewis-Manning Hospice.

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Where does advocacy fit with ‘natural support networks’ and MDTs?

Tony Walter drew two circles to demonstrate how a person with cancer is simultaneously at the centre of a team of health, social care and voluntary sector professionals – the multidisciplinary team (MDT) and at the centre of their own ‘natural support network’ comprising their family members, friends, neighbours, work colleagues, congregation and wider acquaintances.  While I felt comfortable as a paid charity worker sitting in the MDT circle I felt that a volunteer advocate is different.

Tony Walter is Director of the Centre for Death and Society at the University of Bath and he was speaking at the annual conference organised by Lewis Manning Hospice in Poole.  Tony explained that there is not yet enough research into the support available to family carers from naturally existing networks as opposed to the support from health and social services.  He described some projects around the world which seek to mobilise communities or to mobilise a person’s natural networks.

Conference programme

In an ideal world, Tony concluded, natural support networks are strong and people need medical expertise not holistic care from an MDT.  However, Tony argued somewhat controversially to my mind, palliative care programmes that continue to expand holistic care of patient and carer without also helping to mobilise natural support networks risk further professionalising dying and disempowering communities’ own capacities to provide support.

Volunteer advocates work to the brief of their advocacy partner but they do inevitably come into contact with members of their partners informal network.  Should the advocacy partner wish to explore how to talk to family or other network members about their illness and the support that they would like from them then a volunteer advocate can do this with them.  In this way the volunteer can help a person to mobilise their own network.  Advocacy support is also available to the carers and family members of a person with a diagnosis who are also ‘affected by cancer’. Needless to say our advocates are also frequently called upon to help people get a grip on who is who within their MDT.

Our volunteer advocates considered where they felt themselves to fit in the scheme of two circles.  Owing to the voluntary nature of their work and the type of trusting relationship that they can build with their advocacy partner they seem to fit in the ‘natural support’ circle even though they come from a project operating in the other circle!  Some felt the circles should overlap creating a Venn diagram with a section just for volunteers and others felt they should be free floating satellites.

Carole Hewitt, project lead for Dorset Compassionate Communities

It was immediately obvious that volunteer advocates could be instrumental in helping to meet one of the challenges which Tony identified, that is; how to integrate natural and professional support networks.  In the meantime Dorset Macmillan Advocacy is contributing to the work of Dorset Compassionate Communities and planning for Dying Matters week in May.

Treatment choices can be bewildering

Mr Charles Carter, Consultant Urologist at Royal Bournemouth and Poole Hospitals,  said that while most men like to have a choice of treatments for prostate cancer ‘after all it’s their body’, some find the choices ‘bewildering’.  He described how a multidisciplinary team will discuss each case to identify all the options of benefit.  Following the consultation where a ‘steer’ can be given the patient can discuss his own situation further with the nurse specialist, review their clinic letter and weigh up the printed information from the booklets provided.  Mr Carter noted however that many decisions are affected by people’s knowledge of the outcomes that their friends have had from various courses of action.

Graham Willetts is pictured with Sue Higgins Director of Nursing at Lewis-Manning.

Mr Carter was speaking as part of the Autumn series of educational seminars at Lewis-Manning Hospice in Poole.  Graham Willetts, Chair of Dorset Cancer Champions Board, said afterwards that the talk illustrated how the advocacy challenge is particularly acute with prostate cancer in relation to helping people make the right choices about screening, surveillance and treatment. Lewis-Manning Hospice offers free specialist palliative nursing care to local people living with cancer and other life-limiting illnesses in a brand new facility with stunning views of Poole Harbour. One aspect of the organisation’s stated mission is ‘Raising awareness of what living with a life-limiting illness means, through education and provision of information to the patient, their carers and the community as a whole.’ The seminars are aimed at healthcare professionals, social workers, students and those interested in the care of those with long term life-limiting illnesses and the survivorship agenda.

Kathleen Gillett, Dorset Cancer Advocacy