End of Life Care in Prisons The Patient Carer and Prisoner Perspective Bob Gibson Healthcare Governor, HMP Frankland HMPS Gill Scott Macmillan Prison Project Lead, County Durham and Darlington Foundation Trust - PowerPoint PPT Presentation

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End of Life Care in Prisons The Patient Carer and Prisoner Perspective Bob Gibson Healthcare Governor, HMP Frankland HMPS Gill Scott Macmillan Prison Project Lead, County Durham and Darlington Foundation Trust

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Title: End of Life Care in Prisons The Patient Carer and Prisoner Perspective Bob Gibson Healthcare Governor, HMP Frankland HMPS Gill Scott Macmillan Prison Project Lead, County Durham and Darlington Foundation Trust


1
End of Life Care in PrisonsThe Patient Carer and
Prisoner PerspectiveBob Gibson Healthcare
Governor, HMP FranklandHMPSGill Scott Macmillan
Prison Project Lead, County Durham and
Darlington Foundation Trust
2
End of Life Care
  • A suggested working definition for end of life
    care is
  • care that helps all those with advance,
    progressive, incurable illness to live as well as
    possible until they die. It enables the
    supportive and palliative care needs of both
    patient and family to be identified and met
    throughout the last phase of life and into
    bereavement. It includes management of pain and
    other symptoms and provision of psychological,
    social, spiritual and practical support.
  • (Department of Health, 2008)

3
End of Life Care Strategy (2008)
  • 500,000 people die in England every year
  • Large majority of deaths follow a period of
    chronic illness such as heart disease, cancer,
    stroke, chronic respiratory disease, neurological
    disease or dementia.
  • 58 occur in NHS hospitals
  • 18 occur at home
  • 17 in care home
  • 4 hospices
  • 200 people died in custody in England and Wales
    in 2010/11with 122 (61) deaths from natural
    causes

4
Natural Deaths in Prison
5
Expected Deaths in Prison
  • More deaths from terminal illness can be expected
    as the prison population continues to age.
    (Ombudsman,2011) ( Turner, 2011)
  • people in prison should be treated with dignity
    and respect and given as much choice as is
    possible about the care they receive as they
    approach the end of their lives (End of Life
    Care Strategy, 2008)

6
Expected Death in Prison
  • Carers and family members of a person who is
    approaching the end of life have a vital role in
    enabling that person to die in the place of their
    choice. They also have their own needs. Many
    carers willingly take on the role of looking
    after someone close to them who is nearing the
    end of life. However, the physical,
    psychological, social, financial and spiritual
    consequences of doing so need to be taken into
    account.
  • My friend Eddie

7
North East Macmillan Palliative Care Project
  • 2 year project funded by Macmillan and North East
    Offender Commissioning Unit
  • Working with 7 North East Prisons
  • Developed Macmillan Adopted Prison Standards 28
    MAPS
  • Patient
    pathway
  • Early Identification of Patients
    End of Life Care
  • Views of patients and prisoners

8
Patient and Prisoner Involvement HMP Frankland
  • HMP Frankland, High Security Adult Male Prison,
    Population 800
  • Single Patient Interview
  • Group work with Prisoner Consultative Committee
  • Group work with Prisoner Health Trainers

9
Patient and Prisoner Involvement HMP Frankland
  • Feedback from 4 working groups
  • Questionnaires to 8 residential wings focusing
    living with a life limiting illness and dying in
    prison
  • 32 Questionnaires returned

10
Questions Included
  • Current understanding of services available
  • What type of information would you find useful?
  • Concerns and issues living with a palliative
    condition while in prison
  • Concerns and issues receiving end of life care
    and dying in prison
  • Do you think it is important to have the
    opportunity to discuss and plan your care in
    advance?
  • Concerns or questions regarding fellow inmates
    with palliative needs remaining on the
    residential wing
  • Who should be involved in your care?

11
Themes
  • Little understanding of services available
  • I would not know what to expect or ask for
  • It is good to know that there are people
    who can help, because once someone
  • who is dying goes from the wing you dont
    really know what happens
  • Requests for information and resources
  • Being able to provide a booklet of frequently
    asked questions
  • DVD or video to answer questions
  • My friend has filled this questionnaire in for
    me because I cant read of write

12
Themes
  • Equitable access to quality care
  • I would hope to be treated with respect
    compassion and dignity
  • I would be worried I did not receive the
    same treatment as in the community
  • Concerns about family and contact with family
  • Would I get increased access to my family?
  • Is anyone available to support my
    children?
  • I would want my family to be updated and
    have honest information
  • Who would break the news that I had died
    to my family?

13
Themes
  • Little understanding about choices at end of life
    Al Megrahi
  • Do we get released when we only have three months
    left to live ?
  • Where would I be moved hospital wing or stay
    here?
  • Would I be allowed to stay in my cell, with staff
    and people I know?
  • I think it is important to discuss what my wishes
    are before I am unwell, and not to be
    resuscitated.
  • Concerns about timely pain and symptom control
  • I would be worried that there would be no quick
    response to the panic bell.
  • Would I get pain control on time or be left to
    suffer unnecessarily?

14
Themes
  • Requests for support for spiritual, mental
    health, completing life tasks
  • I would be concerned I would die without a
    spiritual advisor
  • I would like to be able to go home to be with my
    mam and not die in prison
  • Concerns about what happens after death
  • Who would break the news that I had died to my
    family?
  • What happens to my body when I die?
  • What would happen to pets?

15
Themes
  • Support towards fellow prisoners nearing end of
    life, remaining on the wing
  • Being with staff and inmates who know him may be
    able to make his last days more bearable. Also
    to give him practical and emotional support.
  • As a human being I would not have any worries
    about supporting someone, I would offer my
    support and shoulder no matter who that person
    was.
  • I would question whether the wing was the right
    place for someone near the end of their life,
    lack of medical facilities, resuscitation,
    hygiene ect.

16
Themes
  • People who should be involved in my care
  • Nurses from healthcare, social worker,
    experts in the field of condition
  • A named nurse I can contact
  • Other inmates if we want that
  • Doctors consultants
  • Faith minister, pastoral
  • Personal Officer
  • Physiologists
  • Samaritans
  • Outside Doctors and Nurses
  • Specialist and Macmillan Nurses
  • Mental Health staff

17
Outcome of Consultation
  • Developed Patient information DVD
  • Prisoner and patients families
  • Education to prison officers and prison nurses
  • NHS staff outside of prison
  • Patient information leaflet
  • My friend Eddie - Considering approach to needs
    of prisoner carers

18
References
  • Department of Health(2008) End of Life Care
    Strategy-promoting high quality care for all
    adults at the end of life
  • Prison and Probation Ombudsman for England and
    Wales (2011) Annual Report 2010-2011
  • Turner.M.Payne S Barbarachild Z (2011) Care or
    Custody? An evaluation of palliative care in
    prisons in North West England. Palliative
    Medicine 254, pg370-370
  • Fuller A, (2011) No bars to care. Inside
    Palliative Care 18pg13-14

19
Further information
  • Gill Scott g.scott3_at_nhs.net
  • Bob Gibson bob.gibson_at_hmps.gsi.gov.uk
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