My late uncle Stewart was a sign writer with Aberdeen Corporation, as the Council was called 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 ever seen, Muhammad Ali, the brilliant Scots comedian Billy Connolly and the international movie star Michael J. Fox. They all have Parkinson’s.
Fox, star of “Back to the Future” 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 which has been 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 was his body would often freeze and without assistance he couldn’t help himself to eat, dress or walk. It had nothing to do with him being branded as stubborn.
There are other examples. One man on admission to hospital told staff his medicine was due at noon but the hospital staff insisted he get it at 1pm. This resulted in him losing his voice and subsequently suffered uncontrollable tremors.
Parkinson’s is a progressive neurological disorder which affects one person in every 350. The suggestive symptoms are slowness of movement, tremor, rigidity and poor movement. It can affect anyone. At present there is no known cure, but the symptoms can be managed by medication.
Since the foundation of the the charity in 1969, by a lady called Mali Jenkins, Parkinson’s UK have spent over £80 million on research into the condition. Several projects are based here in Scotland. A remarkable sum of money considering they raise all their own funds and do not receive any national government or local government monies.
The condition was first 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 out at the time a person with Parkinson’s requires it. To put it simply the loss of dopamine within the brain affects movements such as walking, talking, writing and swallowing. Hence the requirement for people with Parkinson’s to get their prescribed medicine exactly when it is needed.
It is therefore with great regret, and I must say 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 both 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 give Parkinson’s patients their medicine on time can lead to severe disruption of their faculties.
I recall in my role as manager with Parkinson’s UK visiting a care home at the request of the wife of gentleman with the condition. She was concerned that he never seemed to finish a meal and he 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 and therefore just stopped trying. Subsequently, I held an educational sessions with the care staff so they became more aware of the condition and recognising the issues people with Parkinson’s face every day of their lives.
The Parkinson’s UK charity held seminars with care and medical staff throughout the UK to raise awareness of the issue. However, despite raising the issues with MSPs, MPs and local councillors and getting the 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 pain killers. 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? Its been suggested specialist nurses could provide the medicine. But that’s not practical and they wouldn’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. None the less 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 that includes, specialist nurses, consultants, speech and language therapists, dieticians and Parkinson’s support staff all doing their best to help and support those who have Parkinson’s.
It is time that the decision makers in the health boards get off their backsides, get their act together and think outside the box, to ensure people with Parkinson’s get their correct medication when they require it – not when it’s convenient, as already agreed, and set out in clinical guidelines. This would help alleviate the fear people with Parkinson’s have when they need to be admitted to hospital.
Len Ironside is a former champion wrestler who served as an Aberdeen councillor for 35 years, four years as council leader
