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  • Writer's pictureGillian Lacey-Solymar

Gillian's thoughts on the NICE summary

NICE summary

Your responsibility 

Local commissioners of health care have responsibility to enable the guideline to be applied when professional using services want to use it. 

Who is it for? • Healthcare professionals • Commissioners and providers • Adults with Parkinson's disease and their families and carers

People have the right to be involved in discussions and make informed decisions about their care, as described in making decisions about your care.

1.1 Communication with PWPs

  • Empower them to make choices about their care THIS IS NOT HAPPENING

  • In discussions, aim to achieve a balance between providing honest, realistic information about the condition and promoting a feeling of optimism. THIS IS VERY DEPRESSING 

  • Because PWPs can get impaired cognition, coms problems and/or depression, provide them with oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary. INDIVIDUALLY TAILORED? WHO ARE THEY KIDDING

  • Consistent communication from the professionals involved.  HOW CONSISTENT IS NEVER?

  • Advise family members and carers about their right to carer assessment, and assessment for respite care and other support. CARER ASSISTANCE? WE HAVE NOT BEEN OFFERED ANY. HAS ANYONE ELSE?

  • Comprehensive care plan. HAS ANYONE SEEN ONE OF THESE?

  • Accessible point of contact with specialist services (e.g. a nurse specialist) REALLY?

  • Tell DVLA FINE

  1. Diagnosing Parkinson's disease

  • Suspect Parkinson’s disease in people presenting with motor symptoms. WHAT ABOUT NON-MOTOR? 

  • Refer to a specialist FINE.

  • Clinical Diagnoses 

  • Post-mortem diagnoses  REALLY? POST MOTERM? THIS EARLY?

  • Reviews of diagnoses regularly and reconsider diagnoses (PWPs should be seen at regular intervals for 6-12 months) IS THAT HAPPENING? 

  • These next points all refer to how to diagnose and with which technology e.g. PET (NO COMMENT)

  • Up to the end of this section 

1.3 Pharmacological management of motor symptoms

- Before starting treatment, discuss symptoms, lifestyle, benefits and harm of different options. THIS DOES SEEM TO BE HAPPENING ON THE WHOLE

- How to take PWPs off other medications 

- PWPs in hospital should have medicine at the right time WOULDN’T THAT BE NICE

- How to prescribe first line treatment SEEMS TO MAKE SENSE

Information and support

  • PWPs should be given oral and written info about ICD and other side effects. SEEMS TO MAKE SENSE BUT IS IT ALWAYS HAPPENING? 

  • Pay attention to dyskinesia. 

  • For ICD’s recognise when they may come and talk about different types of ICD’s eg. gambling as well as who to contact if ICDs develop. 

  • Discuss ICDs at review appointments. 

Managing therapy for PWPs with ICD

  • Seek professionals with specialist expertise before changing the therapy. 

1.5 Pharmacological management of non-motor symptoms

- Daytime sleepiness.


- Restless leg syndrome. 

- REM.

- Nocturnal akinesia and how to treat it. 

- Orthostatic hypotension and how to treat it.

- Depression and how to treat it.

- Psychotic symptoms and how to treat them. 

- Parkinson’s disease and dementia and how to treat it. 

- Drooling of saliva and how to treat it. 

1.6 Pharmacological neuroprotective therapy

1.7 Non-pharmacological management of motor and non-motor symptoms

Parkinson's disease nurse specialist can:

  • Do clinical monitoring. 

  • Be a continuing point of contact for support including home visits. 

  •  A reliable source of info for PWPs and carers. WHO HAS SEEN A PARKINSON’S NURSE? NOT ME.

Physiotherapy and physical activity

  • Consider referring PWPs in early stages to physio therapists. WHY CONSIDER? WHY NOT JUST REFER? 

  • Occupational therapy- Help with daily living. AND PRESUMABLY WORK TOO IN YOPDs (BUT YOPDs ARE NOT EXPLICITLY REFERRED TO) 

  • Speech and language therapy- For early PWPs and those with problems communicating, swallowing, or having saliva. Also consider referring PWPs at later stages. 

  • Nutrition- Consider referring PWPs to dietitian. Discuss a diet with most protein eaten last thing and discuss protein and supplements in general. 

  • DBS and intestinal gel- Offer advanced PWPs “best medical therapy” e.g. apomorphine but offer DBS only if best medical therapy does not works. 

  • Palliative care- PWPs and carers should be given opportunities to talk about prognosis with priorities and shared decision making discussed. Oral and written info should be given about progression, advanced care planning, what happens at the end of life and available support services e.g. equipment. GRIM BUT I'M SURE IT HAS TO BE DONE. IS IT DONE?

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