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Listen to the Seldom Heard

22 January 2016

Health and social care professionals need to see each person as separate from their illness and not make any assumptions, was the key learning from the Seldom Heard Conference held last week at the Hospice in conjunction with The Royal College of Nursing.

Over 60 delegates attended the conference, which focused on raising awareness of the issues affecting the ‘seldom heard’– people with learning disabilities, dementia or from minority groups, or people who rarely access palliative care services such as asylum seekers or prisoners. The four speakers shared research and anecdotes from their setting, challenged common misconceptions and gave advice on how to communicate effectively with individuals whatever their background, mental capacity or ethnicity.

Steve Jamieson, CEO of the Hospice commented, “The key learning from the Seldom Heard Conference was that all health and social care professionals, whether they work in a hospital, in a hospice or in the community, must listen to patients whose voices are seldom heard in order to deliver effective end of life care appropriate to that individual’s needs and background. It is vital that any healthcare professional does not pigeon hole someone just because they have dementia or are from a particular minority group.

He continued, “We are intent on making it a priority to reach more people in their own environments to provide end of life care that fits with their lifestyle and background.  We want to figuratively knock down our walls to engage with people out in the community.”

Learning Disabilities Professor Jim Blair from Great Ormond Street Hospital opened the conference by saying “Everybody’s life has a worth and a person with learning disabilities has just the same right to know what is happening to them at the end of life as anyone else. Professionals must see the person, not the disability, and never be judgemental about their mental capacity. Talk to their family, take the time to understand how best to communicate with your patient and act creatively using pictures, sign and photos if necessary to aid their comprehension.”

Dementia is a terminal illness and 30% of the over 60s will die with dementia, said Rachel Thompson, Admiral Nursing Professional Nursing lead at Dementia UK. However, people with dementia are less likely to receive palliative care.

She echoed the theme of the conference by urging those working with dementia patients to see the person and not just their illness, explaining, “Whilst it is complex dealing with patients who have dementia, especially when they have other co-morbidities that need managing, the key is to pick up on non-verbal communication which may, for example, indicate pain.

“Professionals must also take the time to understand a patient and their background – the person they were before the illness took hold. Talk to their carers too who may hold vital information about their personality and end of life care wishes.”

“It’s also important to ensure that advanced care planning is done as early as possible with a patient after a diagnosis before insight and capacity diminishes.”

NHS England is already making significant inroads into researching inequalities in end of life care, reviewing how minorities are looked after and whether the right services are being commissioned. Ruth Passman, NHS Head of Quality and Healthy Inequalities, explained her work assessing the end of life care needs of prisoners and those in detained settings. She stated that prisoners must have access better care at the end of life, although safeguarding issues are paramount for those who treat them.

The final speaker was Sarah Burnard, Community Engagement Manager from St Joseph’s Hospice in East London. Over the last decade St Joseph’s has pioneered a community social response to reach many diverse groups in its local population who have palliative care needs. Using a variety of approaches of community engagement, the Hospice has trained and worked with volunteers in its community to deliver services to the terminally ill or bereaved at home. These ‘compassionate community’ projects include the successful Namaste Care Programme delivering support to patients with advanced dementia at home.

Sarah said, “Reaching out to minority groups can be done. It just takes time. Hospices and other end of life care providers must do more to step out of the confines of their buildings and into the heart of the community to ensure everyone in our population has access to the same level of end of life care.”

Summing up, Amanda Cheesley, Professional Lead for Long Term Conditions and End of life Care at The Royal College of Nursing said, “Today’s conference has been so refreshing in terms of its content and there is a real optimism that we can revolutionise the delivery of end of life care to the ‘seldom heard’.

“As professionals, we must be more confident to deal with a whole range of diversities, respecting every individual, regardless of background and doing our utmost to see the person behind the illness we treat.

“I feel we are on the cusp of real change and hope everyone who attended the conference feels empowered to change their thinking, educate others and collaborate with other appropriate local organisations to find ways to reach out to those in minority groups who need end of life care. Managed well, this could transform end of life care across society as well as helping prevent unnecessary hospital admissions from individuals who are better informed about their symptoms and condition.”



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