Steve Ford: Lifeline frays too often for patients with Parkinson’s

The MP Catherine McKinnell, who was inspired by her local Parkinson’s UK group to raise the issue in Parliament, recently called on the Department of Health to release figures for the number of Parkinson’s medication errors in hospital.

The results, revealed last week by Parkinson’s UK, make for worrying reading. They show that from January 2013 to December 2014 people with Parkinson’s were subject to over 3,300 avoidable medication errors in hospitals across England, with almost 600 of these causing discernible harm, including increased pain, severe rigidity and hallucinations.

We know that these numbers are likely to be the tip of the iceberg. Because of a general lack of understanding about how Parkinson’s is managed, many medication errors often go unreported.

In order to fully understand the devastating impact of these errors, we need to appreciate the extent to which medication is an absolute lifeline for people with Parkinson’s.

For people with Parkinson’s, medication offers the ability to manage the condition on a day-to-day basis and provides a level of control after a diagnosis which can make you feel that control has been taken away.

It is precisely because of this that medication errors can have a catastrophic physical and psychological impact, not only on the health of people with Parkinson’s, but their families and carers too.

Having control taken away from you can be terrifying, never more so when you know that a lack of control can severely impact on your health and your basic ability to walk, talk and eat. Terry Walsh was admitted to hospital for an issue unrelated to his Parkinson’s in November 2013. During the time he was in hospital he was never guaranteed to get his medication on time. “I was helpless and completely out of control of my own illness – it felt like being in prison,” he said. “My symptoms significantly worsened over the time I was there – picking things up, drinking and eating became especially difficult.”

As the statistics show, Terry is not alone in his experience. Other people I have spoken to have told me they are “terrified” at the thought of going into hospital because of not being in control of their medication and the debilitating impact this could have on their life.

As part of our Get It On Time campaign, Parkinson’s UK is calling on the Government and NHS to take urgent action to ensure all staff have a basic understanding of Parkinson’s and that people with Parkinson’s are able to take their own medication while in hospital when possible – avoiding reliance on extremely busy and under-pressure hospital staff to remember the exact medication timings of specific individuals.

Whoever holds the balance of power after the General Election in May needs to make addressing medication errors and driving up the overall quality of care for people with Parkinson’s a priority.

This is not only a matter of ethics, but also of economics. We know that patients with Parkinson’s spend almost 75 per cent longer in hospital than those of a similar age without the condition – equating to over 128,000 excess bed days per year. In 2012/13 these excess days cost the NHS more than £20m.

There are many reasons why people with Parkinson’s are subject to medication errors in hospital. Ward round times not corresponding with individual medication regimes or ward staff not understanding the critical importance of people with Parkinson’s getting their medication on time are but two.

We know that ward staff want to deliver the best care for their patients and that resources are increasingly stretched. But we also know that by making small changes care can be revolutionised for people with Parkinson’s in hospital and the NHS can save millions which could be spent supporting people whose condition has deteriorated as a result of these errors.

Improving the quality of care for people with Parkinson’s across the wider health and social care sector is key.

To drive a more strategic approach, Parkinson’s UK, together with leading Parkinson’s professionals, has set up the UK Parkinson’s Excellence Network to bring together the passion and expertise of leading clinicians with the strategic leadership and resources of Parkinson’s UK underpinned by the voice of people affected by Parkinson’s.

It is only by working alongside the Government and health and social care professionals that we can affect real change for people with Parkinson’s.

What I know for certain is that it is essential that people with Parkinson’s get their medication on time, every time, wherever they are. With the right focus and commitment from the Government and NHS change is possible. We cannot afford to stand still on this.

• Steve Ford is chief executive of Parkinson’s UK. Further details can be found at www.parkinsons.org.uk/getitontime