By Dr Andrew Pearson, ST6 Geriatric Medicine, Western General Hospital

Parkinson’s Advanced MasterClass 34A, November 2018



The city of Edinburgh Parkinson’s and Movement Disorder Services treat around 2000 people with Parkinson’s disease. The service is provided by geriatrician and neurology consultants and Parkinson’s disease nurse specialists.

Local audit data has demonstrated an average age of 68 years (SD 8.7 years), with half of the patients being in either the complex (45%) or palliative (5%) phases of disease. Fifteen percent of local Parkinson’s disease patients required a secondary care admission in the preceding year, with 342 admissions for 272 patients. These patients were older (average age 78 years, SD 8.5 years), 9% were admitted from a nursing or residential home, and 24% died during an admission.

GPs in Scotland have the option to create a Key Information Summary (KIS) for patients that can be accessed by out of hours and emergency services, ambulance crews and secondary care. This can provide information on a patient’s past medical history, drug therapy, next of kin and power of attorney details, resuscitation status and a summary of an anticipatory care plan and the preferred place of care. Of the patients audited who were admitted, a KIS summary was present in 52%. However, many were lacking in detail (for example, only 48% specified the patient’s resuscitation status) and 12% were judged to have no useful anticipatory care plan information.

Based on this information and on discussion with members of the Parkinson’s and Movement Disorder Services team, a Service Development Plan was drawn together to improve anticipatory care planning. This was in the context of several high-profile campaigns in Scotland to encourage the use of Realistic Medicine, patient-centred care, and to improve the nation’s health literacy. The service development plan recognised the current under-utilisation of the service website and the whole range of resources, tools and educational materials that now existed as a result of these national campaigns.


  • To redevelop the Parkinson’s and Movement Disorders service website so that it is better used and more valuable to patients.
  • To prioritise improving patient understanding and engagement with anticipatory care planning through this website, with a consistent message that can be continued in future medical and nurse specialist outpatient consultations.
  • To lay the basis for the future development of tools that promote better quality anticipatory care plans, with greater continuity of discussions between appointments.


A new service website has been completed. This consists of ten pages on the NHS Board’s main site which are structured to appeal to both newly referred and return patients attending clinics. The pages cover the topics outlined below and aim to pull together all existing resources by linking to external sites rather than recreating content that is relevant to patients with Parkinson’s disease and their families or carers.


Page Title Description of contents
Parkinson’s Services
An introduction to the service
What is Parkinson’s disease
A basic explanation of Parkinson’s disease and related movement disorders, linking to NHS Inform for more detail
Coming to Clinic
Details of the locations and set up of the outpatient services across the city.  This includes a description of what to expect and what to bring to a first appointment, practical information on how to change appointments, and links to more detailed health board websites about each clinic location.

Encourages the use of Ask 3 Questions – a health literacy tool to promote patient understanding and invite discussion when a patient is presented with a new diagnosis or treatment options.

Living with Parkinson’s disease
Introduces and links to Parkinson’s UK website with information supporting people living with Parkinson’s disease.

Describes the role of the Edinburgh Parkinson’s Assessment Clinic, and links with the neurological rehabilitation and day hospital services.

There is also an introduction to the role of medications, new developments in the media, financial and driving issues, and the local support groups and activities, all with appropriate links to external sites.

Carer Support
Provides details of the local carer support and befriending services that are run by the council and charities.
Planning for the future
Describes the concept of complex and palliative phases of the disease and the importance of thinking about care wishes and future plans in this situation.

Explains the types and purpose of Power of Attorney, with details and factsheets from the Office of the Public guardian.

Explains the role of Key Information Summaries.

Introduces the idea of an Anticipatory Care Plan, echoing the national campaign ‘What Matters to You?’ that emphasises a consultation should always include discussion of what the patient feels is important to them.  The page links to resources from NHS Inform and Health Improvement Scotland, including videos of patients describing their own examples of care plans and why they are important.  There are also details of the national ACP documentation and app at

Uses an initiative from St Triduana’s GP practice in Edinburgh to frame consideration of anticipatory care plans for patients with advanced disease around consideration of what they would wish for in three specific scenarios. These are:

  • if you suddenly collapsed,
  • if you had an infection that was not responding to antibiotics,
  • if you were no longer able to eat and drink due to an illness.

Describes the role of wills and how to approach creating one.

Describes the role of resuscitation attempts and explains why a DNACPR form is usually appropriate for palliative with an advanced or palliative health condition, with links to factsheets on the national documentation and video resources.

A list of current and past public departmental events, and links to local charity events
A summary of the resources linked elsewhere on the site
Taking part in research
An invitation to join the local research register and a description of current research studies.
Information for GPs and professionals
Links and resources for professionals.



The next intentions are to gain patient feedback and quantitative date on the use of the website. The content will be refined and expanded as necessary in what is expected to be a continuous process as the exact role of the site becomes clear. The introductory information will also be complemented by written information that can be handed out during consultations.

In order to improve the quality of advanced care planning the use of the ‘Three Questions’ from St Triduana’s GP practice will be trialled in patients with Parkinson’s disease now living in nursing homes. These are an easily identifiable group with a higher likelihood of being faced with the scenarios in question.

It is also considered to develop a tool for patients attending outpatient clinics that encourages them to consider what concerns them most in regard to their future health and care and provide them with a record of what was discussed to take away and help build on this progress in subsequent appointments.


Dr Gordon Duncan – Consultant in Medicine for the Elderly, NHS Lothian
Dr Sarah Marrinan – Consultant in Medicine for the Elderly, NHS Lothian
Anna Bryans – Final year MBChB student, University of Edinburgh
Alison Stewart, Tina Daniels and Alison Derbyshire – Parkinson’s Disease Specialist Nurses


NHS Lothian Website:
NHS Scotland ACP Information
St Triduana’s GP practice in Edinburgh