The Press and Journal (Inverness, Highlands, and Islands)

Give timely help to peo­ple with Parkin­son’s

- Len Iron­side Health · Parkinson's Disease · Mental Health · Medicine · Society · Neurology · Health Conditions · Aberdeenshire · Muhammad Ali · Billy Connolly · Hollywood · United States of America · United Kingdom · Mali · Scotland · London · Michael J. Fox · James Parkinson

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.

 ?? Pho­to­graph by Bill El­liott of Mac­duff ?? This im­age of a kite surfer brav­ing the wa­ters of the River Ythan at New­burgh.
Pho­to­graph by Bill El­liott of Mac­duff This im­age of a kite surfer brav­ing the wa­ters of the River Ythan at New­burgh.
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