Parkinson's disease sufferers will this week launch a campaign for better access to essential drugs in hospital, amid mounting evidence that some wards often fail to administer medication promptly, with severe consequences for their health.
Parkinson's disease sufferers will this week launch a campaign for better access to essential drugs in hospital, amid mounting evidence that some wards often fail to administer medication promptly, with severe consequences for their health.
Campaigners say that doctors and nurses on general medical wards frequently fail to recognise the needs of patients with the motor neurone disease, which is typically treated by a combination of drugs administered according to a strict timetable.
The consequences of not taking medication on time can be devastating, according to Parkinson's support groups. Symptoms include varying degrees of paralysis, with patients unable to move, speak, eat or swallow, or psychotic episodes and hallucinations, which can be severely distressing.
The subject is to be aired at a Scottish Parliamentary debate on Wednesday, with the Parkinson's Disease Society (PDS) hoping that MSPs will push for greater flexibility in administering Parkinson's drugs, including the right to "self-administer" their own medication while in hospital.
Around one in 500 people develop Parkinson's, a progressive neurological condition which affects movements such as walking, talking and writing, and there are around 10,000 sufferers of the disease in Scotland.
Problems often arise when Parkinson's sufferers are admitted to wards for other conditions, it is claimed.
While self-medication is officially supported by Scottish Government policy, sufferers claim the reality in hospitals is often very different, with medics reportedly unwilling to depart from strict drug rounds.
A survey by PDS recently found that the majority of Parkinson's patients were not allowed to self-medicate during their last stay in hospital and that two thirds of these people did not receive their medication on time.
The charity claims there is widespread reluctance among consultants and nurses to listen to patients or their relatives, and that they often dismiss them as "difficult or pushy". It has recorded instances of patients having their personal supplies of medication confiscated, being denied drugs because they have been designated "nil by mouth", and not being able to get drugs out-of-hours.
Tanith Muller, parliamentary and campaigns officer at PDS, acknowledged that there were barriers to implementing self-medication policies, but argued that there needed to be a "culture shift" in some hospital wards towards better recognising the needs of Parkinson's patients.
She said: "There are genuine concerns around safety from some clinicians and nurses about self-medication. There are concerns around having very powerful medication which is potentially not secure and issues around staffing shortages and not having the physical capacity to administer drugs.
"There are also less good reasons: clinicians and nurses perhaps thinking these patients are terribly fussy, having a paternalistic attitude, thinking they know what's best for you when you come into hospital."
As well as raising awareness of Parkinson's patients' needs, PDS is arguing for a doubling of the number of Parkinson's Disease Nurse Specialists (PDNS) to help facilitate better care.
Dr Donald Grosset, consultant neurologist at the Institute of Neurological Sciences in Glasgow, supported the move towards self-medication. He said: "For most patients with Parkinson's, providing their medication at the routine drug round timings on the ward will not be good enough."
A spokesman for the Scottish Government said that it was up to individual health boards to promote such policies and ensure it had enough specialist Parkinson's nurses.
Symptoms and treatment
- Symptoms of Parkinson's disease have been known and treated since medieval times.
- Its symptoms were not documented until 1817 in An Essay on the Shaking Palsy by the British physician James Parkinson.
- There are around 10,000 people diagnosed with Parkinson's disease in Scotland.
- Major symptoms are tremors, usually beginning in one hand, slowness of movement and stiffness or rigidity of muscles.
- Treatment of Parkinson's involves one of the most complex combination of drugs employed for any disease, with the most commonly used drug being Levodopa.
