PDUK - for PwP

Notes and Quotes for 'GET IT ON TIME' DVD

We are pleased to introduce this short video on the theme of 'Get it on time'. This does not refer to a Saturday night out but to the medication needed to keep a patient with Parkinson's as well and as co-operative as possible whilst in hospital.

Parkinson's Disease (PD) is a very long term degeneration of neurons (nerve cells) which use dopamine as the neurotransmitter (ie. to communicate with each other). These range from nerves connecting the gut with the brain (a connection only recently discovered) to the nerves which control most muscle functions. It also affects how the muscles interact to produce smooth movement of limbs or facial expressions.

It is known that the PD process can start up to thirty years before diagnosis and it is generally thought of as an affliction of the elderly. However it has been diagnosed in patients as young as 16 and it is not uncommon in people in their 40s or 50s.

Diagnosis can only be made when enough symptoms are obvious and at this stage 60 – 80% of the dopaminergic nerve cells in parts of the brain are damaged or dead.

As you might expect this causes a raft of problems. Most obvious are tremors whilst at rest and uncontrolled movements but stiffness, inability to move on request, difficulty in swallowing and pain are all common problems. It is easy to see how these can affect your nursing of a PD patient whose medication is not working.

Currently there is no cure for PD but a range of drugs can relieve many of the symptoms. They are all substitutes or modifiers for the missing dopamine and are therefore needed at specific times which vary from one patient to another as they are used up at different rates by the body.

If the drugs are not made available when needed – remember they take time to be absorbed and put to use – the symptoms of PD will reappear. PD patients are usually well aware of their own needs and should be encouraged to self-medicate where possible. They are their own experts but please make sure the tablets are within their reach!!

If the tablets are not on time you will have a patient who appears to be uncooperative, awkward, uncommunicative, sometimes moving uncontrollably and often unable to swallow or to sit up to do so safely. You may have to administer unpleasant tasting tablets firmly into the cheek pouch with fluid to help absorption if the patient can safely swallow. There are serious safety issues here for patients who cannot swallow properly.

THERE IS NO NEED FOR THIS TO HAPPEN.

YOU will have made life difficult for yourself and your patient just by not giving meds on time. Some may be required as frequently as every two hours, some only twice a day. If they are given late or out of order, out of synchrony, your patient may take as long as 48 hours to get back to a normal steady state. In the meantime you have put them back in a private hell that they know is unnecessary. This does not make them want to give you a box of chocs!!

DON'T DO IT – PLEASE GIVE PD MEDS ON TIME EVERY TIME

There are serious cost implications for your Trust if this is seen as negligence requiring compensation. In any event you will have caused that patient to occupy a bed for days longer than necessary.

THINK ABOUT IT – DON'T FORGET -- 'GET IT ON TIME'

Some quotes from patients and carers (from several Trusts)

'I know his pills were given to him in a plastic cup and left on his locker but nobody stayed to make sure he took them, even though they could see the state he was in.'

'Patient told staff that she had not had her tablets on time and was often told that someone would see to it. Sometimes it was an hour before she received them and then only after further requests.'

'Medication not supplied in accordance with the patient's needs – often late, sometimes missed altogether or wrong drugs supplied. Patient became rigid to the extent of being unable to open her mouth. Drugs were pushed into her cheek to dissolve. Patient later commented that they tasted horrible. Visitors invariably had to remind staff about medication being due. It could take up to 40 minutes to arrive. On one occasion there was no record of PD meds being given for two days when ten times a day was required.' (Husband of patient)

'Despite frequent reminders drugs were often given at wrong times and I was left shaking without drugs for up to two hours. The staff were surprised when I was unable to get out of bed or wash myself. Some of the staff were very understanding but others seemed to think I did it to get attention. Meals were brought and then removed when I was unable to move to eat them. I was in hospital for 14 days and lost two stone in weight.'

'Hallucinated when tablets not given in hospital. OK when at home.'

'I found that my wife was receiving her medication at irregular times when the drug trolley was going round, instead of the times they should be given to control her illness, thus causing her to 'freeze' and unable to move her hands which meant she could not take her tablets or eat her meals. I had quite a job to make the staff understand this. They saw her as an awkward old lady who refused to eat. I explained the problem to the staff and at first I met with a lot of resistance as they thought I was telling them how to do their job. I insisted that I stay with her all day to feed her and give her her medication. I drew up a list of her Parkinson medication, listing the problems that would arise if they were not given at the correct times. I was glad to see they took note of this and put it on the board with her charts. After a few days of my taking care of her medications everyone was amazed at the difference in her and were able to treat the other problems she had more easily.'

So to remind you again: Not giving PD medications on time costs everyone. Patients suffer, the Trust loses money and you lose respect. 'Get it on time' is common sense. Please use it.