The NHS Lothian Parkinson’s Nurse Specialist team provide a range of services for people living with Parkinson’s, their family, carers and anyone experiencing difficulties related to the condition. This service can be accessed by self-referral. You must have a confirmed diagnosis and be under the care of a NHS Lothian consultant, either Neurology or Medicine of the Elderly.
People with Parkinson’s can expect a review appointment around every six months. These reviews will alternate between your consultant and your Parkinson’s nurse.
NOTE: AS OF AUGUST 15TH 2024 THERE IS A PERIOD OF EXTENDED SICKNESS WITHIN THE SERVICE WHICH MEANS PHONE CLINICS MAY CLOSE ON SOME DAYS. THERE MAY ALSO BE A NEED FOR SOME OF THE FACE-TO-FACE CLINICS MAY NEED TO BE CANCELLED.
WHERE YOU WILL SEE YOUR NURSE
Nurse led clinics are currently held at Royal Infirmary Edinburgh, Western General, St John’s Hospital, East Lothian Community Hospital, Midlothian Community Hospital and Sighthill Medical Practice. We will aim to offer an appointment at a clinic nearest your home but if you need to be seen sooner than planned, you may be offered an appointment where the first availability is.
Home visits are not routinely offered but may be arranged in exceptional circumstances, including for those who live in nursing/care homes.
TELEPHONE SERVICE
Our designated telephone clinics are currently held on Monday, Wednesday and Friday mornings. These are for people who have concerns about their Parkinson’s condition only and feel they cannot wait until their planned clinic appointment.
This is not an emergency service. If you feel you need urgent medical attention, please use the appropriate services.
To book a telephone consultation call: 0131 465 9156
Monday to Friday between 9am – 12 Noon (until 30th June 2024)
NOTE: As of the 1st July 2024, there will be new times as outlined below:
Monday to Friday between 8.30am – 10.30am
Your call will be answered by one of our secretaries who will give you a date and time when one of the nurses will call you back. (If you hear a recorded message between these hours, please hang up and call back as our lines are busy. Do not leave a message as this will not be responded to).
It has been brought to our attention that that the secretaries have had an increasing number of calls where individuals have been verbally aggressive/ abusive. This is completely unacceptable. The secretaries are receiving the calls on behalf of the nurses and it is very upsetting that they are having to deal with such calls.
HOSPITAL ADMISSIONS
If you are admitted to hospital, it is rarely because of your Parkinson’s but most likely due to another health-related issue. The Parkinson’s nurses have an alert system to inform us when any of our patients are admitted to a Lothian hospital. We may add advice about managing your Parkinson’s to your hospital notes and phone the ward if required. We will review some patients in hospital if there is a need.
REFERRALS TO ALLIED HEALTH PROFESSIONALS
The Parkinson’s nurses work closely with a number of services. We can refer directly to departments such as physiotherapy and speech and language therapy. We also liaise closely with local research teams to ensure opportunity to take part in research is highlighted.
You can access some services by self-referral. Adult Social Care Departments allow self-referral to request packages of care or access to your local Community Occupational Therapist. See helpful numbers below.
- EDINBURGH CITY: 0131 200 2324
- WEST LOTHIAN: Under 65: 01506 282252/ Over 65: 01506 776 700
- MIDLOTHIAN: 0131 271 3900
- EAST LOTHIAN: 0845 603 1576
We hope this information is helpful,
Yours sincerely,
NHS Lothian Parkinson’s Nurse Specialists
The Parkinson’s Nurses are Alison Stewart and Sharon Reading who share the Lead Nurse role.
The team also consists of Tina Daniels (due to retire in May 2024). There are two further Parkinson Nurse Specialists Daniel Curran and Melanie Arthurs. Another new member of the team is hopefully due to start in May 2024.