References
| Section and author/date | Reference | |
Section 2.1 – WHO 2020 | World Health Organization (2020) Palliative care fact sheet . Available at https://www.who.int/news-room/fact-sheets/detail/palliative-care [accessed 18 August 2021] | |
| Section 2.1 - .Joint HSE& IHF Report 2008 | Health Service Executive & Irish Hospice Foundation (2008) Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks. | |
| Section 2.2 – WHO 2002 | World Health Organization (2002) WHO Definition of Palliative Care. Available at http://www.who.int/cancer/palliative/definition/en/ [accessed 18 August 2021] | |
| Section 2.2 - NICE 2017 (1.9 Palliative care) | National Institute for Health and Care Excellence (2017) Parkinson's disease in adults. Available at https://www.nice.org.uk/guidance/NG71 [accessed 18 August 2021]. | |
| Section 2.2 - Wilson et al 2007 | Wilson E & Seymour J (2007) ‘Exploring the palliative and end-of-life care needs of those affected by progressive long-term neurological conditions’ Journal of Care Services Management; 2:92–102. | |
| Section 2.2.1 – Adapted from Bede et al 2009 | Bede P et al. An integrated framework of early intervention palliative care in motor neurone disease as a model to progressive neurodegenerative diseases. Poster at European ALS Congress, Turin. 2009. | |
| Section 2.3 - Leadership Alliance for the Care of Dying People. Annexe G, p106, (2014) | Leadership Alliance for the Care of Dying People (2014) One Chance to Get it Right: Improving people’s experience of care in the last few days and hours of life. | |
| Section 2.5 - Tuck et al 2015 | Tuck KK et al (2015) ‘Preferences of patients with Parkinson’s disease for communication about advanced care planning’ American Journal of Hospice and Palliative Medicine; 32:68–77. | |
| Section 2.6 - National Service Framework for Long-term Conditions, Department of Health (2005) | Department of Health (2005) National Service Framework for Long-term Conditions. Available at https://www.gov.uk/ government/ publications/ quality-standards-for-supporting-people-with-long-term-conditions [accessed 9 August 2021] | |
| Section 2.6 – NICE 2017 | National Institute for Health and Care Excellence (2017) Parkinson's disease in adults Available at https://www.nice.org.uk/ guidance/ NG71 [accessed 18 August 2021] | |
| Section 3.2 -Detering et al 2010 | Detering KM et al (2010) ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’ British Medical Journal; 340:c 1345. | |
| Section 3.2 - The Irish Palliative Care in Parkinson’s Disease Group (2016) | The Irish Palliative Care in Parkinson’s Disease Group (2016) Palliative care in people with Parkinson’s disease: Guidelines for professional healthcare workers on the assessment and management of palliative care needs in Parkinson’s disease and related Parkinsonian syndromes. | |
| Section 3.6 Person-centred care diagram | The National Council for Palliative Care & National Voices (2014) Every Moment Counts: A narrative for person centred coordinated care for people near the end of life.
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| Section 3.6 - NICE 2021 | National Institute for Health and Care Excellence (2021) Shared decision making Available at: https://www.nice.org.uk/ guidance/ ng197 [accessed 18 August 2021] | |
| Section 4.1 - SIGN 2010 | Scottish Intercollegiate Guidelines Network (SIGN) (2010) Diagnosis and pharmacological management of Parkinson’s disease: A national clinical guideline.(Archived.)
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| Section 4.3 - Twycross and Wilcock 2002 | Twycross R & Wilcock A (2002) Symptom Management in Advanced Cancer.
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| Section 4.3.1 - NICE 2021 | National Institute for Health and Care Excellence (2021) Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain. Available at https://www.nice.org.uk/guidance/ng193 [accessed 18 August 2021] | |
| Section 4.3.1 - NICE 2016 | National Institute for Health and Care Excellence (2012) Palliative care for adults: strong opioids for pain relief. Updated 2016. Available at https://www.nice.org.uk/Guidance/CG140 [accessed 18 August 2021] | |
| Secti on 4.3.1 - Vargas-Schaffer G 2010 | Vargas-Schaffer G. Is the WHO analgesic ladder still valid? Can Fam Physician. 2010 Jun; 56(6): 514–517 https://www.ncbi.nlm.nih.gov/ pmc/ articles/ PMC2902929/ | |
| Section 4.3.2 - Varanese et al 2010 | Varanese S et al (2010) ‘NMDA antagonist memantine improves levodopa-induced dyskinesias and “on-off” phenomena in Parkinson’s disease’ Movement Disorder; 25(4):508–510.
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| Section 4.3.2 - NICE 2017 | NICE Institute for Health and Care Excellence (2017) Parkinson's disease in adults Available at https://www.nice.org.uk/guidance/NG71 [accessed 18 August 2021] | |
| Section 4.3.3 - Kaif JG et al (2012) | Kaif JG et al (2012) ‘Prevalence of oropharyngeal dysphagia in Parkinson's disease: a meta-analysis’ Parkinsonism and Related Disorders; 18(4):311–5.
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| Section 4.3.3 - NICE 2017 | National Institute for Health and Care Excellence (2017) Parkinson’s disease in adults. Available at https://www.nice.org.uk/guidance/NG71 [accessed 18 August 2021] | |
| Section 4.3.4 - RCP/BMA 2018 | Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent. Guidance for decision-making in England and Wales. 2018. https://www.bma.org.uk/media/1161/bma-clinically-assisted-nutrition-hydration-canh-full-guidance.pdf [accessed 18 August 2021] | |
| Section 4.4 - Hasson et al 2010 | Hasson F et al (2010) ‘An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease’ Palliative Medicine; 24(7);731-736 | |
| Section 4.6 - Richfield et al 2013 | Richfield EW et al (2013) ‘Palliative care for Parkinson’s disease: A summary of the evidence and future directions’ Palliative Medicine; 27(9):805–810.
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| Section 4.6 - Lokk et al 2013 | Lokk J & Fereshtehnejad SM (2013) ‘Managing palliative care in Parkinson’s disease from diagnosis to end-stage disease: what the clinician should know’ Neurodegenerative Disease Management; 3(2):169–183.
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| Section 4.6 – NHS 2011 | National End of Life Care Programme et al (2010) End of life care in long term neurological conditions: A framework for implementation. Available at https://www.nai.ie/assets/98/E29C88A6-9CA5-06B3-E74D285E3C0695A2_document/End_20life_20care_20long_20term_20neuro_20conditions.pdf
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| Section 4.7 -DHSSPS 2010 | Department of Health, Social Services and Public Safety (2010) Living Matters, Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland. Review and recommendations (2016): https://www.rqia.org.uk/RQIA/files/1c/1c349f45-1c38-49bb-aeeb-e6a363f4c5ad.pdf
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| Section 4.7.1 - The Irish Palliative Care in Parkinson’s Disease Group (2016) | The Irish Palliative Care in Parkinson’s Disease Group (2016) Palliative care in people with Parkinson’s disease: Guidelines for professional healthcare workers on the assessment and management of palliative care needs in Parkinson’s disease and related Parkinsonian syndromes. | |
| Section 4.8 - Hasson et al 2010 | Hasson F et al (2010) ‘An exploration into palliative care and end-of-life experiences of carers of people with Parkinson’s disease’ Palliative Medicine; 24(7):731–736
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| Section 4.8 - Giles et al 2009 | Giles S & Miyasaki J (2009) ‘Palliative stage Parkinson’s disease: patient and family experiences of healthcare services’ Palliative Medicine; 23(2):120–125
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| Section 5.1 – Dame Cicely Saunders | Stevens E et al (2009) Palliative Nursing: Across the Spectrum of Care.
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