Delayed access to a groundbreaking new drug for Parkinson’s disease has left a Glasgow family effectively housebound.
John Boyd, 66, who lives in Knightswood, was diagnosed with the degenerative condition nine years ago.
His specialist team told him in April that Produodopa would be the most effective treatment for his symptoms, which can be extreme and unpredictable.
The drug, which was approved for use on the NHS in March by the Scottish Medicines Consortium (SMC), is only for people with very complex Parkinson’s.
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Mr Boyd suffers sudden and frightening "off" periods multiple times a day, when his existing medication stops working, leaving him unable to move or speak and sometimes unresponsive.
These lapses can also cause uncontrolled spasms, similar to to a seizure, as well as excruciating muscle cramps and feelings of intense anxiety.
He has been prescribed a rescue medication which his wife, Kate, administers through an injection.
However, the injections are not always effective.
On multiple occasions in recent months, an ambulance has had to be called.
Due to the potential severity of his Parkinson's, Mr Boyd is now scared to leave his home and Mrs Boyd is afraid to leave him alone.
Produodopa - which is delivered steadily into the body 24 hours a day, via a small pump - has the potential to be life-changing for Mr Boyd.
However, at his most recent appointment, he was told it was not possible to confirm a start date for the treatment.
Charity, Parkinson’s UK Scotland, has criticised the delay as "unacceptable" and is calling on NHS Greater Glasgow & Clyde (NHSGGC) to accelerate its rollout.
Mr Boyd said: “It’s getting worse.
“We’re now at the max in terms of the number of times there’s an incident and the amount of medication being taken.
"Kate is maxed out too, losing sleep, worrying all the time.
"The last couple of weeks have been hard.”
'It’s a worry if he was left on his own': Kate Boyd said it took her husband, John, 15 minutes to respond to emergency injections after a recent bad turn in his Parkinson's (Image: GordonTerris/Herald&Times)
Mrs Boyd added: “John took a bad turn recently. I gave him an injection, but he still hadn’t come round after 15 minutes.
"By this time my daughter was urging me to give him another dose, which you can, but it is frightening.
"John was unresponsive all this time. I was in dire straits.
"I did give him another dose and eventually he started to respond. But it’s hard to administer that all the time and it’s a worry if he was left on his own.”
The SMC approved Produodopa for a subset of Parkinson's patients on March 11 with the restriction that it should only be prescribed to people who are "not eligible for deep brain stimulation (DBS)".
This has created some confusion, as Mr Boyd would qualify for DBS but does not want to undergo the procedure, which currently has a two-year waiting list and involves electrodes being surgically implanted through the skull.
The restriction is not specific to Produodopa. The SMC followed an "abbreviated" approvals process and applied the same restriction already in place for predecessor drug, Duodopa, which has the same manufacturer - Abbvie.
A Parkinson's patient being fitted with electrodes for deep brain stimulation treatment at Pasteur 2 Hospital in Nice, France. Waiting times for the procedure in Scotland are around two years (Image: Getty)
The Herald understands that local guidelines on Produodopa have been drafted within NHS GGC in response to the SMC decision, but have yet to be formally signed off.
It is expected that it will then be up to clinicians to interpret these guidelines to decide whether or not to make the drug available to patients such as Mr Boyd.
Parkinson's UK Scotland said it is aware of patients in Highland and Tayside who have already been prescribed Produodopa by their consultants on the basis that they were more likely to benefit from a medicine-led approach than DBS.
A spokeswoman for the charity urged NHS GGC to follow a similar approach.
She said: "NHS GGC manages the Scotland-wide DBS service, so they will be aware that the current waiting time from referral to procedure for Deep Brain Stimulation Surgery is about two years.
"Given the already extreme nature of John's symptoms, it is clear that this would not be a suitable option.
"Condemning John to another two years with these symptoms would be unimaginably cruel when an effective treatment is available."
'It's not a cure, but it can be transformational' - Dr Esther Sammler (Image: UniversityofDundee)
Dr Esther Sammler, a consultant neurologist in NHS Tayside and one of the principal investigators in the clinical trials which demonstrated that Produodopa is safe and effective, said she had seen the benefits first-hand in Parkinson's patients who have been taking the drug experimentally for up to four years.
Dr Sammler added: “It is not a cure, but for the right candidate Produodopa is transformational.
"It can give some people much better control over unpredictable Parkinson’s symptoms, so they are able to live their lives in a way that they thought was gone forever.
“Now that NHS Scotland has approved Produodopa, it is incredibly important that specialist Parkinson’s teams are able to initiate treatment for people who could benefit as soon as possible.”
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James Jopling, director of Parkinson’s UK Scotland, said: “We are incredibly concerned about what John, Kate and their family are having to go through.
"John’s Parkinson’s is very complex, and the symptoms that he’s having to live with are clearly taking their toll.
"Everyone in the family is living in fear of the next sudden off period.
"It is unacceptable that John and his family are living with this when a treatment that could help is available.
“We want NHS GGC to tell John when he can start this treatment as soon as possible.
“Produodopa was approved for use in NHS Scotland back in March.
"We know there are people in other parts of the country who have already begun treatment.
"Produodopa has been added to the list of medicines that consultants can prescribe in NHS GGC.
“John’s own clinical team has told him that the treatment is his best option to try and manage these dreadful symptoms.
"John has not been told of any clinical reasons why treatment should be delayed.
"He has even undergone training in how to use the equipment needed to administer the medicine.
"We are at a loss to understand why he is still waiting for his recommended treatment to start.”
'At a loss to understand' - James Jopling, Parkinson's UK Scotland (Image: ParkinsonsUKScotland)
In a statement to the Herald, NHS GGC said: "Earlier this year, the SMC advised that the medicine Produodopa had been accepted for restricted use by the NHS in Scotland.
"After liaising with local specialists, NHS Greater Glasgow and Clyde's Area Drugs and Therapeutics Commitee accepted this recommendation.
"Our Parkinson's Disease service is now developing local guidance on the use of this medicine to ensure it is prescribed and administered in a safe manner.
"Patients will be able to access Produodopa through the service after this guidance has been approved.
"Prescriptions for this medicine will be in line with the restriction set out by the Scottish Medicines Consortium."
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