The Press and Journal (Inverness, Highlands, and Islands)
Give timely help to people with Parkinson’s
My late uncle Stewart was a sign writer with Aberdeen Corporation, as the council was called back then. He worked five days a week and enjoyed a drink at his club and a bet on the horses every weekend. Just an ordinary guy. But he shared something with the greatest boxer the world has known, Muhammad Ali; the brilliant Scots comedian Billy Connolly and the Hollywood actor Michael J Fox. They all developed Parkinson’s disease.
Back To The Future star Fox has written a couple of books on living with the condition. It’s such a positive and inspirational account of his life. He has also created a foundation in America that was set up to assist others. Here in the UK the leading charity is Parkinson’s UK.
When he ended up in hospital, Uncle Stewart was considered to be a difficult cantankerous patient. The truth is his body would often freeze and, without assistance, he couldn’t help himself eat, dress or walk. It had nothing to do with being stubborn.
There are other examples. One man, on being admitted to hospital, told staff his medicine was due at noon but they insisted he get it at 1pm. This resulted in him losing his voice and he subsequently suffered uncontrollable tremors.
Parkinson’s is a progressive neurological disorder that affects one person in every 350. The suggestive symptoms are poor and slow movement, tremor and rigidity. It can affect anyone and while, at present, there is no known cure, the symptoms can be managed by medication.
Since the foundation of the charity in 1969, by a lady called Mali Jenkins, Parkinson’s UK has spent more than £80 million on research into the condition. Several projects are based here in Scotland. That’s a remarkable sum of money considering they raise all their
Ensure people with Parkinson’s receive their correct medication when it’s needed, not when it’s convenient
own funds and do not receive anything from national or local government.
The condition was discovered by Dr James Parkinson in 1817 from his home in London. His essay, “Shaking Palsy”, is still considered a relevant and informative piece of medical enlightenment.
One of the important features in combating Parkinson’s is prescribed medicine, which must be given at the time the person with Parkinson’s requires it. Put simply the loss of dopamine within the brain affects movements such as walking, talking, writing and swallowing. That is why people with Parkinson’s require their prescribed medicine exactly when it is needed.
It is therefore a source of great regret and more than a little anger that after 20 years campaigning for hospital patients and people in residential homes to get their medicine on time – and despite the fact it is written into Sign and Nice clinical guidelines – that this is still not happening.
A recent report concluded: “Scotland’s hospitals fail to give people with Parkinson’s medication on time more than 100,000 times each year.”
Failure to provide medication to people with Parkinson’s when it’s needed can lead to severe disruption of their faculties.
In my role as a manager with Parkinson’s UK, I recall visiting a care home at the request of the wife of a gentleman with the condition.
She was concerned that he never seemed to finish a meal and was clearly losing weight. On investigation it appeared the gentleman did not have the dexterity to use a fork and knife due to his Parkinson’s so had just stopped trying. Subsequently, I held educational sessions with the care staff so they became more aware of the condition and at recognising the issues Parkinson’s patients face every day.
Parkinson’s UK held seminars with care and medical staff throughout the UK to raise awareness of the issue. But despite raising the issues with MSPs, MPs and local councillors, and getting medical guidelines changed, people with Parkinson’s are still not being given their medicine on time
When I had a spell in hospital I remember the nurses waking me up at 6am to give me my injection and painkillers. They had to start at that time in order to get round everyone in the ward before attending to other duties. You can see, therefore, how difficult it would be to identify and administer medication to patients.
So how can we resolve this problem? It has been suggested specialist nurses could provide the medicine. But that’s not practical and they couldn’t be there 24/7. Perhaps self-medicating could be used, where a patient holds their own medicine and administers it when needed. However, there could be security issues with this. Still, having reached an agreement with NHS boards they should seek ways to honour that agreement.
There is a dedicated army of hard-working, under-resourced staff, which includes, specialist nurses, consultants, speech and language therapists, dieticians and Parkinson’s support staff, who are all doing their best to help and support those with the condition.
It is time for health board decision-makers to get their act together, think outside the box, and ensure people with Parkinson’s receive their correct medication when it’s required, not when it’s convenient – as already agreed and set out in clinical guidelines. This would help to alleviate the fear people with Parkinson’s have when they need to be admitted to hospital.