{"id":10257,"date":"2022-09-23T09:50:01","date_gmt":"2022-09-23T08:50:01","guid":{"rendered":"https:\/\/apps.nhslothian.scot\/refhelp\/?page_id=10257"},"modified":"2024-11-06T09:44:57","modified_gmt":"2024-11-06T09:44:57","slug":"neurology-palliative-care","status":"publish","type":"page","link":"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/palliativecare\/neurology-palliative-care\/","title":{"rendered":"Neurology (Palliative Care)"},"content":{"rendered":"\n<p><strong>Information<\/strong><\/p>\n\n\n\n<p>Holistic management of neurological illness may require a palliative approach at any disease stage, not just the end of life. However, there are certain indicators that would suggest a change in emphasis of focus of care from extending life at all costs to prioritising comfort, is appropriate.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Progressive decline in physical or cognitive function<\/li>\n\n\n\n<li>Increasing difficulty with communication and swallowing<\/li>\n\n\n\n<li>Recurrent aspiration pneumonia\/breathlessness\/respiratory failure<\/li>\n\n\n\n<li>Persistent paralysis after stroke<\/li>\n\n\n\n<li>Complex symptoms including pain<\/li>\n\n\n\n<li>Multiple admissions<\/li>\n\n\n\n<li>Weight loss<\/li>\n<\/ul>\n\n\n\n<p>It is important to initiate planning ahead (Anticipatory Care Planning) conversations early in the disease trajectory, and especially before communication or capacity becomes compromised.&nbsp; Focus on what matters to the individual and who they would wish to speak for them if they were unable to communicate their wishes.&nbsp; Planning is an evolving process that can be added to as things change.&nbsp; Ensure the Key Information Summary is updated with individual&#8217;s current preferences.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.spict.org.uk\/wp-content\/uploads\/2023\/10\/REDMAP-cards-for-staff-September-2023.pdf\">https:\/\/www.spict.org.uk\/wp-content\/uploads\/2023\/10\/REDMAP-cards-for-staff-September-2023.pdf<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/ihub.scot\/project-toolkits\/anticipatory-care-planning-toolkit\/anticipatory-care-planning-toolkit\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/ihub.scot\/project-toolkits\/future-care-planning-toolkit\/future-care-planning-toolkit<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.nhsinform.scot\/acp\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.nhsinform.scot\/fcp<\/a><\/p>\n\n\n\n<p>Having Realistic Conversations&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/learn.nes.nhs.scot\/60442\" target=\"_blank\">https:\/\/learn.nes.nhs.scot\/60442<\/a><\/p>\n\n\n\n<div class=\"wp-block-getwid-tabs\" data-active-tab=\"0\"><ul class=\"wp-block-getwid-tabs__nav-links\"><\/ul>\n<div class=\"wp-block-getwid-tabs__nav-link\"><span class=\"wp-block-getwid-tabs__title-wrapper\"><a href=\"#\"><span class=\"wp-block-getwid-tabs__title\">Referral Guidelines<\/span><\/a><\/span><\/div><div class=\"wp-block-getwid-tabs__tab-content-wrapper\"><div class=\"wp-block-getwid-tabs__tab-content\">\n<p>Palliative care is more often a co-production of care between the primary care team and specialist neurology team.&nbsp; A palliative approach is often misunderstood by patients and families as being only about end of life so it is important to emphasise the potential benefits of planning ahead and good symptom control.&nbsp; Good palliative care helps people live longer as well as better which is often a surprising fact to hear!<\/p>\n\n\n\n<p>Where complex issues are presenting challenges, referral to specialist palliative care may be helpful and &#8220;referral&#8221; will result in a joint management plan rather than a handing over of care.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Who to refer:<\/h4>\n\n\n\n<p>In addition to the indicators listed above, consider the following<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>&nbsp;&#8220;I wouldn&#8217;t be surprised if this person died in the next year&#8221;<\/li>\n\n\n\n<li>Complex symptoms or psychosocial issues which prove difficult&nbsp;to manage<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\">Who not to refer:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Patients who do not accept a palliative approach to their illness (although there may still be benefit in discussion with specialist palliative care where the issues are complex and indicators of potential benefit from ACP are present.)<\/li>\n\n\n\n<li>For patients with an existing neurology team, advice should be sought from their neurologist or CNS in the first instance<\/li>\n<\/ul>\n\n\n\n<p>MS specialist nursing team 0131 312 0720<\/p>\n\n\n\n<p>PD specialist nursing team 0131 465 9156<\/p>\n\n\n\n<p><a href=\"mailto:Parkinsons.NurseSpec@nhslothian.scot.nhs.uk\" target=\"_blank\" rel=\"noreferrer noopener\">Parkinsons.NurseSpec@nhslothian.scot.nhs.uk<\/a><\/p>\n\n\n\n<p><a href=\"mailto:MNDservice@nhslothian.scot.nhs.uk\" target=\"_blank\" rel=\"noreferrer noopener\">MNDservice@nhslothian.scot.nhs.uk<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/huntingtonsdisease\/\" data-type=\"URL\" data-id=\"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/huntingtonsdisease\/\" target=\"_blank\" rel=\"noreferrer noopener\">HuntingtonsDisease.aspx<\/a><\/p>\n\n\n\n<h4 class=\"wp-block-heading\">How to refer to specialist palliative care:<\/h4>\n\n\n\n<p>Details of services are available&nbsp;at&nbsp;<a href=\"http:\/\/www.nhslothian.scot.nhs.uk\/Services\/A-Z\/PalliativeCare\/Pages\/SpecialistPalliativeCareServices.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">Palliative Care &#8211; Specialist Palliative Care<\/a><\/p>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-getwid-tabs__nav-link\"><span class=\"wp-block-getwid-tabs__title-wrapper\"><a href=\"#\"><span class=\"wp-block-getwid-tabs__title\">Primary Care Management<\/span><\/a><\/span><\/div><div class=\"wp-block-getwid-tabs__tab-content-wrapper\"><div class=\"wp-block-getwid-tabs__tab-content\">\n<p>Anticipatory prescribing for common symptoms<\/p>\n\n\n\n<p><a href=\"https:\/\/www.palliativecareguidelines.scot.nhs.uk\/guidelines\/pain\/anticipatory-prescribing.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.palliativecareguidelines.scot.nhs.uk\/guidelines\/pain\/anticipatory-prescribing.aspx<\/a><\/p>\n\n\n\n<p>pre-populated Drug Administration chart for Just In case Medication<\/p>\n\n\n\n<p><a href=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/anticipatory-medication.pdf\" data-type=\"attachment\" data-id=\"8948\" target=\"_blank\" rel=\"noreferrer noopener\">anticipatory medication.pdf (nhslothian.scot)<\/a><\/p>\n\n\n\n<p>Management of Spasticity<\/p>\n\n\n\n<p><a href=\"http:\/\/intranet.lothian.scot.nhs.uk\/Directory\/neurology\/Multiple%20Sclerosis\/A%20guide%20to%20managing%20spasticity.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">http:\/\/intranet.lothian.scot.nhs.uk\/Directory\/neurology\/Multiple%20Sclerosis\/A%20guide%20to%20managing%20spasticity.pdf<\/a><\/p>\n\n\n\n<p>Management of Neuropathic pain<\/p>\n\n\n\n<p><a href=\"https:\/\/www.palliativecareguidelines.scot.nhs.uk\/guidelines\/pain\/neuropathic-pain.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">Scottish Palliative Care Guidelines &#8211; Neuropathic Pain<\/a><\/p>\n\n\n\n<p>Management of Sialorrhoea \u2013 excessive drooling<\/p>\n\n\n\n<p><a href=\"https:\/\/www.palliativecareguidelines.scot.nhs.uk\/guidelines\/symptom-control\/Mouth-Care.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">Scottish Palliative Care Guidelines &#8211; Mouth Care<\/a><\/p>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-getwid-tabs__nav-link\"><span class=\"wp-block-getwid-tabs__title-wrapper\"><a href=\"#\"><span class=\"wp-block-getwid-tabs__title\">Resources &amp; Links<\/span><\/a><\/span><\/div><div class=\"wp-block-getwid-tabs__tab-content-wrapper\"><div class=\"wp-block-getwid-tabs__tab-content\">\n<p><em>A variety of&nbsp;&nbsp;<\/em><em>courses for support and palliative rehabilitation (eg Fatigue Anxiety and Breathlessness \u2013 FAB) are available for patients and carers via the Specialist Palliative Day Therapy units at St Columbas Hospice, Marie Curie Hospice Edinburgh and St John&#8217;s Macmillan Centre<\/em><\/p>\n\n\n\n<p><a href=\"https:\/\/services.nhslothian.scot\/palliativecare\/Pages\/DayServices.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">Day Services (nhslothian.scot)<\/a><\/p>\n\n\n\n<p><em>\u2013 please contact by phone \/ e-mail to discuss patient<\/em><\/p>\n\n\n\n<p>Neuro-oncology Team for those with a primary brain tumour<\/p>\n\n\n\n<p><a href=\"mailto:ECNO.nurses@nhslothian.scot.nhs.uk\" target=\"_blank\" rel=\"noreferrer noopener\">ECNO.nurses@nhslothian.scot.nhs.uk<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/weare.nhslothian.scot\/lanfineservice\/\" data-type=\"URL\" data-id=\"https:\/\/weare.nhslothian.scot\/lanfineservice\/\" target=\"_blank\" rel=\"noreferrer noopener\">Lanfine Service Astley Ainslie Hospital<\/a>&nbsp;<em>for people living with a progressive neurological condition<\/em><\/p>\n\n\n\n<p>CRABIS The Community Rehabilitation and Brain Injury Service West Lothian<\/p>\n\n\n\n<p><a rel=\"noreferrer noopener\" href=\"https:\/\/services.nhslothian.scot\/neuropsychology\/Carers\/Pages\/SupportServices.aspx#:~:text=The%20Community%20Rehabilitation%20and%20Brain,condition%20or%20acquired%20brain%20injury\" target=\"_blank\">https:\/\/services.nhslothian.scot\/neuropsychology\/Carers\/Pages\/SupportServices.aspx#:~:text=The%20Community%20Rehabilitation%20and%20Brain,condition%20or%20acquired%20brain%20injury<\/a>&nbsp;you will also find&nbsp;<a href=\"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/Pages\/CRABISWestLothian.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">CRABISWestLothian.aspx<\/a>&nbsp;on RefHelp<\/p>\n\n\n\n<p><a href=\"http:\/\/www.care.hdscotland.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">www.care.hdscotland.org<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.mndscotland.org.uk\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.mndscotland.org.uk<\/a><\/p>\n\n\n\n<p><a href=\"http:\/\/www.mssociety.org.uk\/\" target=\"_blank\" rel=\"noreferrer noopener\">www.mssociety.org.uk<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/eur01.safelinks.protection.outlook.com\/?url=http%3A%2F%2Fwww.parkinsons.org.uk%2F&amp;data=05%7C01%7CHeather.Levy%40nhslothian.scot.nhs.uk%7C721b03aa057443e64b2a08da84eca5ca%7C10efe0bda0304bca809cb5e6745e499a%7C0%7C0%7C637968449165120449%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&amp;sdata=%2FYxm7%2BncIFY04xZ18Z6ROX47o8tlytPW7Y%2Bzm6Y7Qf8%3D&amp;reserved=0\" target=\"_blank\" rel=\"noreferrer noopener\">www.parkinsons.org.uk<\/a>&nbsp;<\/p>\n\n\n\n<p><a href=\"https:\/\/services.nhslothian.scot\/ParkinsonsServices\/Pages\/Living-with-Parkinson%E2%80%99s-Disease.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/services.nhslothian.scot\/ParkinsonsServices\/Pages\/Living-with-Parkinson%E2%80%99s-Disease.aspx<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.vocal.org.uk\/\" target=\"_blank\" rel=\"noreferrer noopener\">Support for carers in Edinburgh and Midlothian &#8211; VOCAL<\/a><\/p>\n\n\n\n<p><a href=\"mailto:Kirsty.x.shaw@nhslothian.scot.nhs.uk\" target=\"_blank\" rel=\"noreferrer noopener\">Kirsty.x.shaw@nhslothian.scot.nhs.uk<\/a>&nbsp;is a carer support officer at Astley Ainslie hospital and can be helpful in liaising\/supporting where carer strain is an issue<\/p>\n\n\n\n<p><a href=\"https:\/\/www.mariecurie.org.uk\/help\/support\" target=\"_blank\" rel=\"noreferrer noopener\">Information and support (mariecurie.org.uk)<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.mariecurie.org.uk\/help\/support\/marie-curie-support-line\" target=\"_blank\" rel=\"noreferrer noopener\">Marie Curie Helpline | Support Line<\/a>&nbsp;&#8211;&nbsp;<\/p>\n<\/div><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Information Holistic management of neurological illness may require a palliative approach at any disease stage, not just the end of life. However, there are certain indicators that would suggest a change in emphasis of focus of care from extending life at all costs to prioritising comfort, is appropriate. It is important to initiate planning ahead<\/p>\n","protected":false},"author":6,"featured_media":0,"parent":4283,"menu_order":6,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"categories":[797,533],"class_list":["post-10257","page","type-page","status-publish","hentry","category-https-apps-testing28-scot-nhs-uk-refhelp-neurology-palliative-care","category-palliativecare"],"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"rttpg_featured_image_url":null,"rttpg_author":{"display_name":"heatherlevy","author_link":"https:\/\/apps.nhslothian.scot\/refhelp\/author\/heatherlevy\/"},"rttpg_comment":0,"rttpg_category":" <a href=\"https:\/\/apps.nhslothian.scot\/refhelp\/category\/palliativecare\/https-apps-testing28-scot-nhs-uk-refhelp-neurology-palliative-care\/\" rel=\"tag\">Neurology (Palliative Care)<\/a><a href=\"https:\/\/apps.nhslothian.scot\/refhelp\/category\/palliativecare\/\" rel=\"tag\">Palliative Care<\/a>","rttpg_excerpt":"Information Holistic management of neurological illness may require a palliative approach at any disease stage, not just the end of life. However, there are certain indicators that would suggest a change in emphasis of focus of care from extending life at all costs to prioritising comfort, is appropriate. It is important to initiate planning ahead","_links":{"self":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/10257","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/comments?post=10257"}],"version-history":[{"count":5,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/10257\/revisions"}],"predecessor-version":[{"id":21457,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/10257\/revisions\/21457"}],"up":[{"embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/4283"}],"wp:attachment":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/media?parent=10257"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/categories?post=10257"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}