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Palliative care for progressive neurological diseases

Palliative care for progressive neurological diseases. Dr Carol Scholes West Herts PCT. Physical Symptoms in MND. Weakness 94% Dysphagia 90% Dyspnoea 85% Pain 73% Weight loss 71% Speech problems 71% Constipation 54% Cough 48% Poor sleep 29% Drooling 25%.

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Palliative care for progressive neurological diseases

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  1. Palliative care for progressive neurological diseases Dr Carol Scholes West Herts PCT

  2. Physical Symptoms in MND • Weakness 94% • Dysphagia 90% • Dyspnoea 85% • Pain 73% • Weight loss 71% • Speech problems 71% • Constipation 54% • Cough 48% • Poor sleep 29% • Drooling 25%

  3. MDT working in MND • Evidence good multidisciplinary working improves patient care Neurology 2005;65:1264-7 Neurology 2004;62:S23.003

  4. West Herts Neuro-palliative MDT • ACS • Community OT • SALT • Dietician • Physiotherapy • Consultant in Palliative Medicine • Palliative Care CNSs • MNDA RDM and volunteer visitors • Grove House OT and Day Care • Peace Hospice Day Care

  5. MND Referrals to NHS community palliative care service PLEASE HELP TOINCREASEFURTHER!

  6. Outcomes of MDT • Transformed timely referral to all relevant services • Co-ordination /Communication of important issues • Advance Care planning • No deaths in A&E • Unplanned hospital admission now rare • Support GPs in keeping complex patients in community – opioids, ethical issues etc • Extended beyond MND • Changed pathway for NIPPV

  7. What do we need in West Herts? • TIMELY placement on GP palliative care register • GSF involvement - communication / feeding / respiratory / planning / support • Education – neurology, rehabilitation, palliative care and primary care • Keyworking

  8. Summary • Progressive neurological conditions need specialist palliative care input as much as cancer patients • Please help identify those in palliative stages and add to palliative care register

  9. Difficult pain Dr Carol Scholes West Herts PCT

  10. Definition • Pragmatic! • Pain inadequately relieved by opioid analgesics given in a dose that causes intolerable adverse effects despite optimal measures to control them • (10-20%)

  11. First and most important step • Retake detailed history of pain / reconfirm presumed cause of pain / assess other issues / precise effect of medication to date

  12. Most common situations • Neuropathic – may regain control for few days at a time on opioid increase • Incident pain – regular opioid dose required to eliminate pain causes side-effects • Dose of opioid required results in intolerable side-effects • “Pseudo-resistance” – psychological / spiritual aspects, underdosing, etc etc

  13. Opioid intolerance • Could addition of adjuvant analgesic or other method of analgesia eg TENS, acupuncture allow reduction of opioid dose? • Can side-effects be managed easily? • Might opioid switch help?

  14. Opioid switch • Suggest discuss with palliative care team first • Oxycodone or Fentanyl patch (hydromorphone, buprenorphine) • Methadone for specialist use only

  15. When to consider • Morphine intolerance is genuine cause of side-effects – nausea / itch / confusion / myoclonus • Patient unable to swallow • Renal failure (morphine metabolites accumulate)

  16. How to change? • Depends on what switching to / from • Detailed guidance in Network adult palliative care guidance 2006 • Palliative care team can help

  17. That’s all I have time for!! Reference: Oliver D et al, Palliative Care of patients with motor neurone disease Progress in Palliative Care 2007, volume 15, number 6, p285-293

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