1. Setting up a collaborative service to support the
palliative care needs of people with learning
disabilities in West Hertfordshire
Why is an MDT and Resource Pack needed?
What has dying got to do with us?
(We’re about living)
Dr Ruth Brown – Associate Specialist – Palliative Care Service – November 2013
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2. We only have one chance to get End of Life Care right
for our service users if we fail to help them plan for end
of life because of our own fears and feelings then they
will most likely die in a place not of their choosing and
we, as their carers, will have failed them when they
most need us and are at their most vulnerable
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3. Challenges in setting up an MDT
•
•
•
•
Parallel Worlds
Knowing who to approach
Procrastination
“Buy-in” from
– the top to obtain support
– teams who could be vital to its success - ensuring
that teams understand why it is important so that
representation happens
• Need for (and lack of) admin support
• Different computer systems so difficulty with
accessing information
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4. Why is it important to plan
• Recognition that someone is entering the last phase of their
life is pivotal to establishing an individual’s priorities for
treatment and care
• Helping service users in decision-making concerning the
balance of the burdens and benefits of treatment options is an
important role for their carers, both formal and informal
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5. What is End of Life Care
• End-of-life care is the care undertaken in the last phase of life,
which may span many months or even years
• Late recognition of deteriorating health, and a culture where
health, living and dying are not openly discussed with service
users until the last days, leads to people dying in a hospital
environment rather than a known preferred place of care (and
death)
• When asked, most people would prefer both to spend more
time, and to die, at home (their usual place of residence)
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6. Planning for the future
• Research in Hertfordshire has shown that most people would
prefer to be cared for and to die at home but this is much
more likely to be achieved if these wishes have been
documented and planned for
• Outcome: where Preferred Place of Death (PPD) known:
A patient was 5.5 times more likely to die at home
• Outcome: where PPD unknown:
A patient was 3 times more likely to die in hospital
• Outcome: 82% of patients with known PPD achieved their
wishes
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7. CIPOLD Recommendations for Palliative Care
• Advance health and care planning to be prioritised.
Commissioning processes to take this into account, and to be
flexible and responsive to change
• All decisions that a person with learning disabilities is to
receive palliative care only to be supported by the framework
of the Mental Capacity Act and the person referred to a
specialist palliative care team.
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8. Mission Statement
The aim of both the MDT and the Resource Pack is to
enhance the care that Service Users receive by
ensuring impeccable and holistic assessment of their
needs. This will then help to maintain dignity,
respect and quality of life – EVEN in the face of a
life-limiting illness
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9. Learning Disability/Palliative Care MDT Aims
• The meeting aims to ensure good communication and smooth
transfer of patients with Learning Disability and Palliative Care
needs between the acute, community and palliative care
settings through this local case discussion meeting
• In the meeting we discuss Service Users’ needs and help to
facilitate co-ordination of their care by developing an action
plan as required
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10. The MDT and Resource Pack – Desired Outcomes
• Improve Service User’s journey at the End of life
• Improve Service User’s care at End of life
• Help Service Users to be cared for in the place of their
choice
• Help Service Users to die in the place of their choice
• Help to support carers and other professionals to support
Service Users
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11. MDT: Who’s Who
Core Representation from:
• Health Facilitation Team
• Community Learning Disability teams: one member from each
locality
• Community Palliative Care Team
plus
Extended Representation :
• Hospital Safeguarding Vulnerable Adults Named Nurse
• Transitional Care Nurse Co-ordinator
• Hospital Palliative Care Team
[Cover for members who are absent]
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12. LD/ SPC MDT Agenda
•
•
•
•
•
•
Apologies
New referrals
Discussion of Complex issues occurring in known patients
Routine three - monthly Reviews and Updates
Discussion of Deaths
AOB e.g. education, work plans etc
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13. Proforma used
Demographics
GP/DN
LD support
(being updated at present)
Specialist
Palliative Care
Support
Advance Care
Planning
Death
Community team
Preferred Place
Care
Preferred Place
Death
Cardiopulmonary
Resuscitation
(status)
Just in Case
(drugs)
Gold Standard
Framework/
palliative care
register
Resource Pack
Date
Place
Date discussed
(what can we
learn and do
better)
Hospice at home
Hospice inpatient unit
Day hospice
Hospital Palliative
Care team
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Misc
Diagnosis,
issues etc

14. MDT Approach
• We encourage a reflective approach, that shares
areas of concern as well as good practice / expertise
• We learn new skills and gain knowledge from each
other
• We are happy to advise other teams and if other staff
wish to join us to discuss a Service User’s care
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15. Why a Resource Pack
• Delivery of good care at the end of life cannot be left to
specialists in palliative care alone but is an important part of
the role of all carers.
• In producing the resource pack we also acknowledged the
difficulty in service users both accessing palliative care and
being placed on palliative care registers.
• Part of the aim of the pack is to help the carers of service
users document changes and thus produce evidence to
enable this to occur more easily as
Palliative Care meetings and registers in GP surgeries help to
ensure co-ordination of care
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16. The Resource Pack Contents
•
Section 1
DEMOGRAPHICS
•
-
Section 2
Bowel and Bladder function
Capacity
Communication
Cultural and Spiritual beliefs and wishes
Eating & Drinking
Medication
Mental Health Care
Mobility
Seizures
Skin Integrity
Sleep
DAILY LIVING
•
-
Section 3
Agitation
Breathlessness
Fatigue
Nausea and Vomiting
Pain
COMMON SYMPTOMS
•
-
Section 4
Discussions
Flow Diagram
Liaison and Referral
Accommodation
Care Planning
END OF LIFE CARE PLANNING
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17. The Resource Pack Contents II
•
-
Section 5
FAMILY, FRIENDS AND STAFF SUPPORT
Family, Friends and Formal and Informal Carers
Informing others
Staff Support and Training
•
Section 6
USEFUL NUMBERS AND WEBSITES
•
Section 7
Tools
DisDat
Pain assessment
Abbey Pain Scale
Waterlow
MUST
Preferred Priorities of Care (Easy Read)
End of Life Care Pathway (see District Nurse)
GSF Process and Prognostic Indicator
Glossary
Spare Proformas
TOOLS and GLOSSARY
-
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18. Case Study
• Service User in the terminal phase of a known life-limiting illness was
admitted to A&E
• The PPC and PPD were known to be home
• The Community LD and Palliative Care teams responded and discussed
the Service user’s situation with the A&E consultant who felt that this was
most likely a terminal event and the Service User was likely to die in this
hospital admission
• As the PPC and PPD were home it was arranged that the Service User
should return home and that was where death occurred in less than 48
hours
• If the Service User had not been known to both teams and if the PPD/PPC
had not been discussed and documented previously this would not have
happened
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19. Referrals to the meeting
:
Referrals
2010
2011
26
39
2012 (draft
figures)
38
Died
16
Died
16
Died
11
Discharged
2
Discharged
1
Discharged
2
8
Care Carried
forward to 2012/13
22
Advance Care
Planning
undertaken
GSF/Palliative Care
Register
Care Carried
forward to
2011/12/13
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Care Carried
forward to 2013
25

20. The Future
• Improve Advance care Planning
• Education
• Education
• Education
• Clarify data on outcomes
• Roll out to E& N Herts
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21. Why an MDT
• How vulnerable do you need to be to warrant MDT
care?
• How complex do your needs have to be to warrant
MDT care?
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22. "You matter because you are you
You matter to the last moment of your life, and we will
do all we can, not only to help you die peacefully, but
also to live until you die"
~ Dame Cicely Saunders
founder of the modern Hospice movement ~
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