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.
- Progressive decline in physical or cognitive function
- Increasing difficulty with communication and swallowing
- Recurrent aspiration pneumonia/breathlessness/respiratory failure
- Persistent paralysis after stroke
- Complex symptoms including pain
- Multiple admissions
- Weight loss
It is important to initiate planning ahead (Anticipatory Care Planning) conversations early in the disease trajectory, and especially before communication or capacity becomes compromised. Focus on what matters to the individual and who they would wish to speak for them if they were unable to communicate their wishes. Planning is an evolving process that can be added to as things change. Ensure the Key Information Summary is updated with individual’s current preferences.
Anticipatory Care Planning (ACP) (spict.org.uk)
https://www.nhsinform.scot/acp
Having Realistic Conversations https://learn.nes.nhs.scot/60442
Palliative care is more often a co-production of care between the primary care team and specialist neurology team. 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. Good palliative care helps people live longer as well as better which is often a surprising fact to hear!
Where complex issues are presenting challenges, referral to specialist palliative care may be helpful and “referral” will result in a joint management plan rather than a handing over of care.
Who to refer:
In addition to the indicators listed above, consider the following
- “I wouldn’t be surprised if this person died in the next year”
- Complex symptoms or psychosocial issues which prove difficult to manage
Who not to refer:
- 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.)
- For patients with an existing neurology team, advice should be sought from their neurologist or CNS in the first instance
MS specialist nursing team 0131 312 0720
PD specialist nursing team 0131 465 9156
Parkinsons.NurseSpec@nhslothian.scot.nhs.uk
MNDservice@nhslothian.scot.nhs.uk
How to refer to specialist palliative care:
Details of services are available at Palliative Care – Specialist Palliative Care
Anticipatory prescribing for common symptoms
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/pain/anticipatory-prescribing.aspx
pre-populated Drug Administration chart for Just In case Medication
anticipatory medication.pdf (nhslothian.scot)
Management of Spasticity
Management of Neuropathic pain
Scottish Palliative Care Guidelines – Neuropathic Pain
Management of Sialorrhoea – excessive drooling
A variety of courses for support and palliative rehabilitation (eg Fatigue Anxiety and Breathlessness – 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’s Macmillan Centre
Day Services (nhslothian.scot)
– please contact by phone / e-mail to discuss patient
Neuro-oncology Team for those with a primary brain tumour
ECNO.nurses@nhslothian.scot.nhs.uk
Lanfine Service Astley Ainslie Hospital for people living with a progressive neurological condition
CRABIS The Community Rehabilitation and Brain Injury Service West Lothian
https://services.nhslothian.scot/neuropsychology/Carers/Pages/SupportServices.aspx#:~:text=The%20Community%20Rehabilitation%20and%20Brain,condition%20or%20acquired%20brain%20injury you will also find CRABISWestLothian.aspx on RefHelp
https://www.mndscotland.org.uk
Support for carers in Edinburgh and Midlothian – VOCAL
Kirsty.x.shaw@nhslothian.scot.nhs.uk is a carer support officer at Astley Ainslie hospital and can be helpful in liaising/supporting where carer strain is an issue
