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


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

  1. 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 Your partner in health
  2. 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 Your partner in health
  3. 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 Your partner in health
  4. 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 Your partner in health
  5. 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) Your partner in health
  6. 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 Your partner in health
  7. 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. Your partner in health
  8. 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 Your partner in health
  9. 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 Your partner in health
  10. 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 Your partner in health
  11. 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] Your partner in health
  12. 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 Your partner in health
  13. 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 Your partner in health Misc Diagnosis, issues etc
  14. 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 Your partner in health
  15. 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 Your partner in health
  16. 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 Your partner in health
  17. 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 - Your partner in health
  18. 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 Your partner in health
  19. 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 Your partner in health Care Carried forward to 2013 25
  20. 20. The Future • Improve Advance care Planning • Education • Education • Education • Clarify data on outcomes • Roll out to E& N Herts Your partner in health
  21. 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? Your partner in health
  22. 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 ~ Your partner in health