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Improving end of life care for marginalised groups

When her homeless cousin killed in an accident was found to have cancer, Jane Carpenter resolved to help make a difference to others like him.
Jane Carpenter

When her homeless cousin killed in an accident was found to have cancer, Jane Carpenter resolved to help make a difference to others like him

When palliative care expert Jane Carpenters homeless cousin died in a traffic accident and a post-mortem revealed he had advanced cancer, she decided to make a difference for others like him.

Her cousin, who had a learning disability, had become homeless when he was 18 and remained so until his death at the age of 37.

We were about the same age, says Ms Carpenter. What happened to him got me thinking, what can I do to stop this happening to someone else?

She became involved in working out how to deliver end of life care to under-served communities, often marginalised and vulnerable people who are hard to reach.

Although a report in

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When her homeless cousin killed in an accident was found to have cancer, Jane Carpenter resolved to help make a difference to others like him

When palliative care expert Jane Carpenter’s homeless cousin died in a traffic accident and a post-mortem revealed he had advanced cancer, she decided to make a difference for others like him.

Picture: Barney Newman

Her cousin, who had a learning disability, had become homeless when he was 18 and remained so until his death at the age of 37.

‘We were about the same age,’ says Ms Carpenter. ‘What happened to him got me thinking, what can I do to stop this happening to someone else?’

She became involved in working out how to deliver end of life care to under-served communities, often marginalised and vulnerable people who are hard to reach.

Although a report in May by the Care Quality Commission (CQC) – A different ending: Addressing inequalities in end of life care – says everyone should have access to personalised palliative care tailored to their needs, some receive poorer care due to social circumstances, ethnic background or sexual orientation.

An awareness of needs

The CQC blames a lack of awareness about individual needs and has said steps should be taken to improve end of life care for marginalised groups.

Ms Carpenter is well-placed to do just that as she is Macmillan clinical outreach nurse specialist for St Helena Hospice safe harbour project set up in February.

A unique, innovative, cutting-edge service covering north-east Essex, the project aims to increase access to good palliative care and reduce crisis management for travellers, people living in poverty and those with mental health problems, the homeless, LGBT communities, refugees and asylum seekers.

Ms Carpenter is employed by St Helena Hospice in Clacton, funded by Macmillan Cancer Support, and her role involves delivering and developing services tailored to each person’s needs. She works with GP practices, district nurses and hospitals as well as charities and drop-in centres for homeless people.

Trust, respect, understanding

Her job is to make sure people know what services are available and to organise services and support.

She begins by building a therapeutic relationship based on trust and respect not only with the individual – many may initially refuse any offers of help because they feel rejected and alienated by society – but also with support workers.

Good communication skills are essential to build trust and understand each person’s situation. Ms Carpenter took an advanced communications skill course as part of her palliative care training.

‘Loss is a big issue for many homeless people. They may be very upset, grief stricken at what they have suffered – for instance the loss of a relationship, job or home – which affects how they behave.

‘Travellers may be anxious that someone will come in and tell them what to do. Some want to travel rather than stay put when they are ill.'

'Someone who is gay may not want the support I can offer because they think they will be treated with disrespect.'

Empowerment and control

‘To gain someone’s trust I need to listen carefully to what they are saying, to be aware of the judgements I am making, putting them to one side and be honest about what I can or cannot offer.

'If they do not want my help I ask if they would prefer to see someone else and leave the door open in case they want to come back later.

‘Being flexible is important. One person did not want to see me but was happy for me to support her indirectly through supporting others who were looking after her.

'If I am helping someone who is a heavy drinker I will try to negotiate a time when we can talk things over when they have not had too much to drink.’

'A typical day for Ms Carpenter involves visiting drop-in centres, making patient phone calls, writing up notes and liaising with organisations to develop a community network of those working with vulnerable people.

‘It takes time and perseverance to be known and trusted in these tight-knit communities.'

'I think that as the word gets out about the pragmatic, compassionate care and support offered, that we aim to empower people and give them control over their lives at this critical time, then we will be able to get help earlier to them, something which is so important.’

How to build bridges:
  • Put your judgements aside and work to understand the situation from your patient’s viewpoint.
  • If someone rejects your offer of help ask why, and if they’d like to talk another time.
  • If you get something wrong acknowledge it, apologise and say, ‘Please can we start again?’

Read more on the Care Quality Commission's: 'A different ending: Addressing inequalities in end of life care' report here

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