'Without medication he could do nothing'

Laurie Young spent seven months in hospital with an inflammatory bowel condition. Laurie, who has Parkinson's disease, was in intensive care three times and his heart stopped once - his family were told he was not expected to survive. He could not eat, lost the ability to speak walk and was hallucinating.

Initially, medics stopped his Parkinson's medication, while they treated his other symptoms, but his family said his body started to deteriorate.

They lobbied for the drugs to be reinstated, but say that when they were, they were not administered on time - vital, experts say, for the efficacy of Parkinson's drugs. "If they miss one dose it is bad enough, but if they miss more than one it all starts to build up," said Laurie's wife Linda.

It would not just affect that day, but days afterwards. "Sometimes the nurses left it on the bedside unit for him to self medicate. But he was stiff as a board, did not know where he was and could not take his own medication. It just went from bad to worse." she said.

Today Laurie, aged 58, is recovering at home in Andover and Linda says his progress is thanks to him getting his medication on time. "Eventually we got through to them that if he got his drugs on time he would be a different person," said Linda.

Linda said that the family spoke carefully to each member treating her husband - but no sooner had they got the message across, the staff changed. "Although they paid lip service to it, nothing really happened until we almost camped out at the hospital. We were there from 9am until 10pm," she said. "Once Laurie got the medication on time, when he was transferred to his local hospital, he was a different person. They gave me my husband back. "It was like a miracle had happened and now he is walking, talking and eating again."

Each year 34,000 people with the disease are admitted to English hospitals. A survey last year by Parkinson's Disease Nurse Specialists revealed that nine out of 10 nurses felt that patients with Parkinson's can experience clinical problems or an extended hospital stay as a result of missed or late administration of their medication.

Worried that Parkinson's patients like Laurie, who has had the condition for 11 years, are not getting the treatment they need, the Parkinson's Disease Society (PDS) has launched a wash bag full of tips and advice for patients - and those that care for them.

The bag contains a detailed guide including advice on how to prepare for a hospital stay, such as what to bring and who to talk to, plus a medication record with a card to put by their bed and tear off reminder slips to alert staff to their Parkinson's. In addition to the wash bag, the PDS has produced a leaflet: "Helping You Complain - England" which gives people the information to report if something goes wrong.

Anne Martin, Parkinson's disease nurse specialist at Princess Royal University Hospital, Bromley, said medication at the right times is vital for patients like Laurie. "It is absolutely crucial for their well-being that people with Parkinson's get their medication on time, every time in hospital. Failures to do so leads to all kinds of upset to patients both mentally and physically, and can significantly hamper a person's recovery. I believe the most effective way of ensuring medication is administered properly is where possible, to give people autonomy. If they do not get their dopamine drug - a critical substance which affects the control of movement - on time the effects actually wear off. The new PDS wash bag will assist in alerting people to the importance of medication, arming people with the information they need to communicate to hospital staff, the complexity of their condition, raising awareness of the issue in hospitals."

Steve Ford, chief executive of the PDS, said: "The campaign is not about undermining staff working in hospitals - it's about helping staff understand the complexities of the condition and preventing problems arising.In the majority of cases people with Parkinson's are not admitted into hospital because of the condition itself. The most common reasons tend to be hypertension, falls or urinary disorders. This can mean that the individual with Parkinson's is treated by staff who do not have an in-depth knowledge of the condition and of the need for specific medication timings."

The 'Get it on time' wash bag and English complaints leaflet are available to order free of charge from Sharward Services Ltd, Westerfield Business Centre, Main Road, Westerfield, Ipswich, Suffolk, IP6 9AB. Tel: 01473 212 115. Email: pds@sharward.co.uk