What is Parkinson’s Disease?
Parkinson's Disease (PD) is a progressive, degenerative, neurological condition associated with loss of the chemical dopamine which is produced by brain cells (neurones) in the part of the brain called the Substantia Nigra.
What are the symptoms of Parkinson's?
The clinical features (symptoms) of Parkinson's are slowness of movement, muscle rigidity, tremor and postural instability. Parkinson's is a condition which affects movement, some patients find their movements (motor function) become slower but it is also a condition which causes many non motor symptoms including depression, anxiety and pain. The severity of the condition, symptoms and the progression of the condition vary between patients. There is currently no cure for Parkinson’s and we do not yet know why patients get this condition.
It is estimated that around 2500 patients in Lothian have Parkinson’s disease.
What treatment is available to treat Parkinson's Disease?
Parkinson's can be treated by medication (drugs), therapies or occasionally surgery. Medication when required for treatment can be crucial in optimal management of Parkinson's. If medication is not given this can result in patients being unable to swallow, being unable to speak, move and become more dependent. It can also lead to increased falls and higher risk of fractures. Support and help with care as Parkinson's progresses can help people with Parkinson's maintain a good quality of life.
Further information can be obtained from the Parkinson's UK website
Services for People with Parkinson's Disease in Lothian
General Practice (GP)
Many patients with Parkinsons go to their General Practitioner (GP). A NHS Lothian Refhelp Guideline for GPs for people with Parkinsons (PWP) has been developed (attach link) to assist GPs and help them navigate their way through the Parkinsons Disease Services gaining access and support.
Parkinsons Service Specialists
Diagnosis is often made by a Parkinsons Specialists. (Neurologist or Medicine of the Elderly Parkinsons Specialist) following a GP referral and an assessment at an out patient clinic. Patients may be followed up at the Parkinsons Disease Clinic following diagnosis.
The clinics for patients with Parkinsons are held at the following locations;
xxxxxxx on xxxx.
Medicine of the Elderly Parkinsons Specialist
Dr Conor Maguire, Title
Neurologist with a specialist interest in Parkinsons
The majority of patients with Parkinson's are monitored by their GPs but hospital specialists may also provide support which is often needed in addition to drug therapy.
Our aim is that everyone who is given a diagnosis of Parkinson's Disease is referred to the Parkinson's Nurse Specialist Service (PNSS) and offered the opportunity of an appointment with a multidisciplinary team.
To help people with Parkinson's and their families live with the condition regular assessment is often needed. Therefore, the Edinburgh Parkinson's Assessment Clinic (EPAC) was founded. Its aim is to help the person with Parkinson's Disease to self manage their condition with support. Each newly diagnosed Parkinsons patient should be referred to the clinic for assessment so that advice is given as soon as possible after diagnosis.
The EPAC clinic is currently held in the assessment and rehabilitation centre in the Royal Victoria Building at the Western General Hospital one afternoon a week (currently a Wednesday). Transport can be arranged if necessary. Family and Carers are encouraged to attend with the patient. An appointment lasts for approximately two and a half hours. Referrals should be made in writing directly to EPAC. Most of the referrals come from hospital consultants or PD nurse specialists but referrals from GPs, other health professionals, Parkinson's UK Branch and the patient with Parkinson's family or friends can be made.
The EPAC clinic is a therapist led clinic. It has no medical presence at the clinic but following assessment, a report is sent to the GP, hospital consultant and PDNS with the result of the assessments and any recommendations made at the clinic. No changes will be made to any drug treatments and each patient is seen individually by a team of three therapists. A full history will be taken which allows the three therapists to make their individual assessments as person centred as possible. The patient with Parkinson's is then seen by each therapist in turn.
• Physiotherapist assesses posture, balance, walking and general mobility. The patient will be given advice and exercises to maintain their mobility and a range of movements in their joints in an attempt to prevent any deterioration. Advice and exercises is given and onward referral to a community physiotherapist if further treatment is desirable.
•Occupational Therapist assesses practical problems or issues of daily living, leisure or occupations, as well as providing emotional support to both the patient and family.
Speech and Language Therapist assesses speech and communication, as well as other issues the patient may have such as chewing, swallowing and saliva management. Onward referral for treatment and access to other associated services such as lifestyle management programmes, community therapy services, psychology, exercise programmes and hydrotherapy can also be assessed at the clinic.
Other services consist of:
•a clinic for patients with Parkinson's who have neuro-psychiatric specific issues
This is run by XXXXXX on XXXXX
•a psychological device run "anxiety management group"
This is run by XXXXXX on XXXX
Support Telephone Line
A bit about support telephone line.
Lothian Parkinson's Service Advisory Group (LPSAG).
Parkinson's Services for people with Parkinson's are part of a network which is coordinated by Lothian Parkinson's Service Advisory Group (LPSAG). LPSAG's chair and clinical lead for Parkinson's Disease Services is a member of the Neurological Improvement Group which feeds into the work of the Physical and Complex Disability Strategic Programme Board.