Palliative Care Provision for Adults with Learning Disabilities

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Palliative Care Provision for Adults with
Learning Disabilities

• Dr Clea Atkinson
• Palliative Care Consultant
• St Annes Hospice, Newport

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What can Palliative Care offer to adults with
Learning Disabilities who are dying?
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Specifically Highlighted Areas of Palliative Care
Need for those with Learning Disability

• Difficulties in assessing symptoms.
• Difficulties in understanding the illness and its
  implications.
• Ethical issues around decision making and consent
  to treatment.

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What does Palliative Care Offer?

• A focus on quality of life including good symptom
  control.
• A whole person approach taking account of past
  life experience as well as the present situation.
• Care and support for both the person as well as
  those who matter to them.
• Respect for autonomy and choice.
• Emphasis on open and sensitive communication with
  patient, carers and professional colleagues.

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• Who provides Palliative Care?

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Palliative Care can be split into two categories

• General Palliative Care.
• Specialist Palliative Care.

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General Palliative Care

• Low to moderate complexity of palliative care
  need.
• A vital and integral part of routine clinical
  practice .
• Provided by the patients usual professional
  carers e.g. GP, DN, hospital teams.

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Specialist Palliative Care

• Moderate to high complexity of Palliative Care
  need.
• Multidisciplinary teams whose core work is
  Palliative Care.
• Specialist Palliative Care is provided by
  partners from the public, private and voluntary
  sectors.

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• Where is Palliative Care provided?

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Palliative Care Settings

• Hospital
• e.g. general nursing or specialist palliative
  care teams working within district general
  hospitals
• Hospices
• i.e. independent or NHS hospices
• At home
• e.g. GPs, District Nurses or specialist hospice
  at home services
• Local community
• e.g. daycare facilities, community hospitals,
  residential and nursing homes, community
  specialist palliative care nurses.

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The Hospice and Palliative Care
Directory(www.helpthehospices.org.uk)
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How can Specialist services be accessed?

• Most referrals should come through a patients GP
  whilst they remain in the community.
• Hospital consultants may make referrals whilst
  someone is an inpatient.
• Palliative Care services will advise and support
  patients or carers regarding accessing services
  if contacted directly.
• Most GPs will consider referral if this is raised
  with them.

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Why has access been limited?
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Possible factors impacting on poor access

• Fears of health professionals caused by lack of
  confidence, lack of experience and assumptions.
• Fear of carers that a persons care may be
  over-medicalised.
• Carers may lack confidence in communicating with
  health professionals and so may struggle to
  support a person with an learning disability
  through the health system.
• Fears surrounding taking a person out of their
  usual environment.

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Possible factors impacting on poor access

• Prominence of non-malignant diagnoses in adults
  with Learning Disabilities and restricted
  referral criteria in some voluntary sector
  services.
• Patchy Specialist Palliative Care services
  especially in rural areas.
• Difficulties in transitional care from
  paediatrics at coming of age.

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• How is Palliative Care changing?

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Recommendations of the Sugar Report

• Fairness of care provision.
• Services available out of hours for patients with
  a seven-day working .
• Evidence based care to meet patient and family
  needs
• Consultant led specialist services and
  consultant numbers established for adult
  services, paediatric services and transitional
  care.
• Increase in Allied Health Professional posts.
• Increased Clinical Nurse Specialist (CNS)
  capacity and costs to develop 7/7 working.
• Establishment of a 24 hour service advice line
  across Wales for adult and paediatric services.
• The development of the current IT systems for
  adult palliative care and the establishment of an
  IT system for childrens palliative care.

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NICE - Core Palliative Care Services

• Provide all patients with a 24hr service across
  all parts of Wales
• A core palliative care service must be holistic
  and put the patient at its centre.
• Provide all patients with a comprehensive needs
  assessment undertaken by an appropriately trained
  professional

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NICE - Core Palliative Care Services

• Provide patients with the necessary treatment
  delivered through an appropriate setting
• Provide patients with detailed information about
  their conditions
• Ensure services are of a recognised standard and
  well co-ordinated

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NICE - Core Palliative Care Services

• Recognise the importance and contribution of
  community, primary and secondary care and
  independent hospice services
• Provide good symptom control
• Provide psychological, social and spiritual
  support
• Endeavour to enable patients to die in the place
  of their choice and offer support to families and
  carers through the illness and into bereavement

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What else might help?
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What else might help?

• More education for all healthcare professionals
  about caring for adults with Learning
  Disabilities.
• More education for those working within the field
  of Learning Disabilities about Palliative Care
  (eg Cardiff University Postgraduate
  Certificate/Diploma in Palliative Care).
• Raising awareness about this population and their
  unique needs and challenges.
• Recognition that Specialist Palliative Care
  services continue to evolve and improve and dont
  be put off by previous less than perfect
  experiences.
• Collaboration, co-operation and joint-working.
• Feedback your experiences
• http//wales.iwantgreatcare.org/
• emaildwm_at_iwantgreatcare.org