Ruth brown, 2013, Supporting the Palliative Care Needs of People with Learning Disabilities in West...

Your partner in health

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


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


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


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


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)


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


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.


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


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


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 theirchoice

• Help Service Users to die in the place of their choice

• Help to support carers and other professionals to support Service Users


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]


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


Proforma used (being updated at present)

Date

Place

Date discussed

(what can we learn and do better)

Preferred Place Care

Preferred Place Death

Cardiopulmonary Resuscitation (status)

Just in Case (drugs)

Gold Standard Framework/ palliative care register

Resource Pack

Community team

Hospice at home

Hospice in-patient unit

Day hospice

Hospital Palliative Care team

Misc

Diagnosis, issues etc

DeathAdvance Care Planning

Specialist Palliative Care Support

LD supportDemographicsGP/DN


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


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 ofthe 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


The Resource Pack Contents

• Section 1 DEMOGRAPHICS

• Section 2 DAILY LIVING- Bowel and Bladder function

- Capacity

- Communication

- Cultural and Spiritual beliefs and wishes

- Eating & Drinking- Medication

- Mental Health Care

- Mobility

- Seizures

- Skin Integrity- Sleep

• Section 3 COMMON SYMPTOMS- Agitation

- Breathlessness- Fatigue

- Nausea and Vomiting

- Pain

• Section 4 END OF LIFE CARE PLANNING- Discussions

- Flow Diagram

- Liaison and Referral

- Accommodation- Care Planning


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 and GLOSSARY

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


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


Referrals to the meeting:

25Care Carried forward to 2013

22Care Carried forward to 2012/13

8Care Carried forward to 2011/12/13

GSF/Palliative Care Register

Advance Care Planning undertaken

2Discharged1Discharged2Discharged

11Died16Died16Died

2012 (draft figures)

38

2011

39

2010

26

Referrals


The Future

• Improve Advance care Planning

• Education

• Education

• Education

• Clarify data on outcomes

• Roll out to E& N Herts


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?


"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 ~

Ruth brown, 2013, Supporting the Palliative Care Needs of People with Learning Disabilities in West...

Health & Medicine

Transcript of Ruth brown, 2013, Supporting the Palliative Care Needs of People with Learning Disabilities in West...