NHS rolls out ‘wearable’ 24-hour infusion for advanced Parkinson’s

Hundreds of NHS patients with advanced Parkinson’s disease are set to benefit from a portable drug infusion that is gradually released around-the-clock to help better control their symptoms.

The treatment, called foslevodopa–foscarbidopa, will now offer an additional option for certain patients experiencing movement-related symptoms and whose condition is no longer responding to their oral medicines.

The easy-to-use infusion is delivered through a cannula under the skin and controlled by a small automatic pump worn 24 hours a day to help steadily manage patients’ symptoms with fewer side effects.

It works by releasing a combination of medications into the body, with the drug foslevodopa being turned into the chemical dopamine, which can better transmit messages between the parts of the brain and nerves that control movement.

The new treatment option is being rolled out on the NHS in England over the coming weeks (from 27 February) and it is expected that nearly 1,000 patients will be eligible across the country.

Many Parkinson’s patients currently take large numbers of tablets to control their symptoms – sometimes more than 20 a day – which can be difficult to maintain.

People taking medicine this way often report that the peak of their whole day is in the morning and despite taking more tablets they go ‘downhill’ throughout the day.

It can also be a challenge for patients taking these pills to balance symptom control with side-effects, with some patients including impulse control disorders and excessive movement.

Tablets can also lose their effects in the middle of the night, meaning patients can wake up with symptoms and may not be able to get out of bed to go the toilet without risking a fall.

However, by infusing this new drug formula throughout the day and overnight, symptoms can be more steadily managed – with patients also having the option to manually give themselves a boost in dose at any point during the day if needed.

James Palmer, NHS England’s Medical Director for Specialised Services and a Consultant Neurosurgeon, said: “This is great news for hundreds of patients who are living with an often difficult and debilitating condition.

“This important therapy will now offer a vital new option on the NHS for those who aren’t suitable for other treatments such as deep brain stimulation, and we hope it will help nearly a thousand patients to manage their symptoms more effectively and go about their day with a better quality of life.”

Parkinson’s is a condition in which parts of the brain become progressively damaged over many years and it affects around 128,000 people in England.

Foslevodopa-foscarbidopa will now offer an additional treatment option to patients living with advanced Parkinson’s disease who have developed severe motor fluctuations and who are no longer benefitting from other oral treatments but whose condition has been found to respond to the drug levodopa.

Since 2015, NHS England has offered a similar but more invasive treatment where the drugs needed to be delivered into the gut by a permanently placed feeding tube. The new device being rolled-out across the country is small and completely portable, with the infusions taking place under the skin. The easy to fit and remove drug vial normally needs to be changed once a day and the cannula is changed every three days, which can be done at home by patients or their carers.

John Whipps, 70, from Looe, Cornwall, was among those who took part in clinical trials which found that the treatment was safe and effective. John said: “It’s absolutely wonderful that more people can get this drug now. Compared to the previous treatments it really is like chalk and cheese.

“Before this, I was on nearly 20 tablets a day just for my Parkinson’s symptom control, and then all the other tablets on top of that. And I would frequently wake in the middle of the night with internal tremors and take more tablets, but this pump just keeps running through the night.

“I couldn’t plan to do anything, as you don’t know if you’re going to have an off day and need to stay at home.

“So this pump has made life much more plan-able. It’s just one pump change a day you need to factor in, compared to the constant regime of tablets at different times a day.”

Phil, 52, from Cornwall, described how before switching to the pump he would have to take 25 tablets which would result in him feeling ‘on’ and ‘off’ as the medication fluctuated throughout the day, with his symptoms especially bad at night.

Phil said: “With Parkinson’s, some people say you’re like a marathon runner in the morning, by lunchtime it feels like you’re pushing a pram, and then at teatime it’s as if you’re in a wheelchair.

“At night, I was normally not able to turn over in bed, or get up for the toilet, and if I did manage it, I was at risk of falls.

“Whilst wearing the pump, it delivered the drug whilst I was sleeping, enabling me to turn over at night, and get up for the toilet which made a huge difference at night. As a result, I slept much better.

“The pump would run continuously. I put the vial in at 7am, and the pump delivered the drug over a long period, providing a good flat line of drug delivery during the day and then during the night. I could also boost it for an extra blast if needed.”

Health Minister Maria Caulfield said: “This is fantastic news for the hundreds of people in this country who live with advanced Parkinson’s. The symptoms of this disease can be incredibly debilitating, and this therapy will enable people to manage their condition more evenly throughout the day and reduce the side effects of medication.

“This rollout also reinforces the NHS’s collective ability to tackle the big medical challenges of our time and is evidence of the government’s commitment to using technology to deliver faster, simpler and fairer health outcomes for all.”

Laura Cockram, Head of Campaigns at Parkinson’s UK, said: “Parkinson’s disease is the fastest growing neurological condition in the world, and it affects everyone differently. Foslevodopa-foscarbidopa (Produodopa) could be a life-changing option for those whose symptoms are not well controlled by oral medication.

“There are very few advanced treatments for the condition, so we are delighted another one is available. The infusion means people will be able to better manage their symptoms and could potentially have a big impact on families’ lives.

“It won’t be suitable for everybody though, and people with Parkinson’s should speak to their consultant or Parkinson’s nurse to see whether it’s an option for them.”