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Parkinson’s sufferer unable to get hold of critical medication says debilitating disease is getting increasingly worse

Parkinson’s sufferer unable to get hold of critical medication says debilitating disease is getting increasingly worse


When Gaynor Edwards can’t get hold of the critical medication she uses to slow the progression of her Parkinson’s disease, she knows from bitter experience what to expect.

Her debilitating muscle stiffness worsens. The tremors, a characteristic symptom of the degenerative condition, become more pronounced. She is less lucid, and – worst of all – she is in pain. Yet for the 53-year-old from Rye, East Sussex, who took early retirement because of her diagnosis, this is an all-too familiar situation as millions of Britons are now affected by crippling and persistent shortages of essential medications.

Gaynor, a patron of the charity Spotlight YOPD, for those with young-onset Parkinson’s disease, takes Sinemet, a branded version of a drug called co-careldopa, which helps manage tremors and stiffness. An alternative she is often forced to use is ‘less effective’, she says.

And when she can’t get hold of rasagiline, another medication she takes to protect against nerve damage and slow the progression of her condition, the difference is stark.

‘When the medication I’m taking is the right one and is working, it’s the difference between being able to move or not,’ she explains. ‘The drug is like an engine oil to get me moving and ease the muscle stiffness.

Gaynor Edwards, 53, is a patron of the charity Spotlight YOPD, for those with young-onset Parkinson’s disease

Edwards takes Sinemet, a branded version of a drug called co-careldopa, which helps manage tremors and stiffness

Edwards takes Sinemet, a branded version of a drug called co-careldopa, which helps manage tremors and stiffness

‘Chopping and changing brand, dosage or timings is always detrimental. Without these drugs on time, most people with Parkinson’s are stiff and rigid and in pain. We have a very limited quality of life – just existence.’

For Gaynor, as for the many others affected every day by shortages in the nation’s medicines supply chain, it’s an intolerable situation over which they have no control – and it’s escalating.

In 2023 there were 1,634 warnings issued about impending shortages – nearly three times the number in 2020.

A recent poll found almost half of patients have struggled to get essential drugs they were prescribed over the past two years. One in 12 failed to get access despite visiting several pharmacies – an issue which causes ‘stress and inconvenience for patients and doctors’, campaigners say.

Medications affected include commonly-used antibiotics – including, most recently, those for children with whooping cough – HRT, and drugs to treat chronic conditions such as asthma, diabetes, cancer, epilepsy, cystic fibrosis and Parkinson’s disease. But patient groups, politicians, charities and pharmacists are now calling for urgent change to end the ‘dangerous’ problems.

In response, today The Mail on Sunday is launching a campaign – backed by the Independent Pharmacies Association – to end the prescription lottery and improve access to crucial medication.

Together, we are calling for the new Government to implement four simple but significant changes which would help resolve the burgeoning crisis and ease the pressures on patients, pharmacists and GPs.

Firstly, pharmacists must be given wider powers to make simple substitutions for patients when drugs are out of stock. At present, even if they have an alternative patients must obtain a new prescription, often requiring a long wait to speak to a doctor.

Secondly, a public database should be created to allow patients to see which pharmacies have a specific drug on their shelves – ending the need for patients to trawl across towns and cities to find the medication they need, or to be sent back to their GPs for a new prescription.

Our third demand is for drug manufacturers to be required to give adequate advance warning of any known shortages in supply, and face stiff fines if they fail to do so.

And, finally, we believe patients should be permitted to use hospital pharmacies to source crucial drugs if they have them in stock.

Dr Leyla Hannbeck, chief executive of the Independent Pharmacies Association, says: ‘We have for several years been warning of the issues regarding the medicines shortages and the stress and inconvenience this is causing for patients.

‘Every time the demand for a medicine goes up the supply cannot manage. Pharmacists spend on average two to three hours a day trying to source medicines for patients and are often left out of pocket due to sudden hikes in medicines prices.

Dr Leyla Hannbeck, chief executive of the Independent Pharmacies Association, says: 'We have for several years been warning of the issues regarding the medicines shortages and the stress and inconvenience this is causing for patients'

Dr Leyla Hannbeck, chief executive of the Independent Pharmacies Association, says: ‘We have for several years been warning of the issues regarding the medicines shortages and the stress and inconvenience this is causing for patients’

‘The current archaic regulations prevent pharmacists from making simple amends on prescriptions and we have to send the patient back to their doctor which causes more stress for the patient, the pharmacist and the doctor.

‘Despite our calls for a national strategy and better communication and transparency around supply of medicines, we have not yet seen much action by the decision makers. This must change.

‘What does it take for the authorities to finally act?’

Last night, Dr Dan Poulter, a former Conservative Health Minister who defected to Labour earlier this year, threw his weight behind our campaign.

The MP for Central Suffolk and North Ipswich says: ‘As a mental health doctor who has seen patients deteriorate and relapse due to medication shortages, these proposals have clear benefits for patients, whilst at the same time also having the potential to save the NHS millions of pounds.’

The grim reality is that shortages have become the ‘new normal’ in the UK, according to a report published by the Nuffield Trust in April. The ongoing disruption to supply chains is down to several factors, including problems with production in Asia, factory closures during the pandemic, inflation and disruption caused by the war in Ukraine.

While Brexit has not exacerbated the problem in the UK, it has weakened our ability to respond to it. The shortages are being felt by most Western nations, but because the NHS pays relatively low prices for drugs, the UK is not at the top of the list when pharmaceutical companies have low stocks of a drug, experts explain.

In cases of severe supply problems the Government can issue a Severe Shortage Protocol – specific to a certain medication – which advises pharmacists on which substitutions can be made. But these are often not issued until long after pharmacists are already aware of a problem.

Dr Dan Poulter (right), a former Conservative Health Minister who defected to Labour earlier this year, threw his weight behind our campaign

Dr Dan Poulter (right), a former Conservative Health Minister who defected to Labour earlier this year, threw his weight behind our campaign

In 2022, the Government chose to extend a Severe Shortage Protocol issued for HRT drugs, to allow pharmacists to make substitutions where necessary for women struggling with perimenopause symptoms.

Experts have since questioned why the extension was made only for these drugs and not the countless other crucial prescription medicines in short supply.

The Royal Pharmaceutical Society (RPS) and Community Pharmacy England back the MoS’s call to widen pharmacists’ powers to make substitutions without waiting for a protocol.

The RPS says changes to the Human Medicines Regulations 2012 would allow pharmacists to make minor amendments that would allow them to issue a different quantity, strength, formulation or a generic version of the same medicine. ‘This would save doctors, pharmacists and patients time,’ says Dr James Davies, director of RPS England. ‘Pharmacists in hospitals have already been able to do this for years.’

Drugs manufacturers have, since 2019, had a legal responsibility to tell the Government when a problem with supply is likely, ideally at least six months ahead of the shortage kicking in.

But Dr Davies says that while some pharmaceutical companies are good at warning the Department of Health and Social Care (DHSC), others are not.

The Nuffield Trust report in April echoed this, saying the UK ‘struggles to persuade firms to consistently report shortages in a timely fashion’.

Patients would benefit from this information in advance, experts say, as well as being able to better pinpoint where a particular medication might be in stock.

Liz Breen, professor of health service operations at the University of Bradford, is calling for a so-called ‘Argos model’, where patients can access a nationwide pharmacy database to see where drugs are in stock, reserve what they need and potentially pay for it ahead of time and collect it when it’s ready.

Similar systems already exist in some countries including Spain and Switzerland, Prof Breen says. ‘We are doing our patients a disservice by not having these information systems in place,’ she adds. ‘When products are out of stock, the patient has to phone around or travel to find a pharmacy that has their medication. More information about stock locations can ensure medicines are accessible to all, which can help reduce patient stress. We can do better. Other retailers offer this, so why not pharmacies?’

Another change which may help tackle shortages is allowing patients to collect prescriptions from hospital pharmacies if their items are out of stock elsewhere.

This is one of the suggestions being discussed by an advisory group on medicine shortages hosted by the RPS. It will publish its report later this year.

Hospital pharmacies can be quite big and sometimes they have larger supplies of drugs than high street pharmacies,’ says Dr Davies.

For example, one mental health hospital in England recently got a bulk order of medication for ADHD from Australia – one of the drugs severely affected by shortages. But under the current system, only patients treated at the Trust can access the drug.

‘If the medication is there in the NHS, it should be available in the NHS,’ says Dr Davies.

‘If a pharmacy has electronic prescriptions, they should be able to send it to a hospital pharmacy to be supplied there.

‘We know there are barriers that would need to be overcome but it should be explored further as an option.’

The Liberal Democrat's health spokesman said the party planned to 'fix broken supply chains'

The Liberal Democrat’s health spokesman said the party planned to ‘fix broken supply chains’

Many MPs, health charities and pharmacy bodies are calling for the next Government to take urgent action to address the ongoing problems.

The Mail on Sunday asked the Conservatives, Labour and the Liberal Democrats to commit to our demands ahead of the General Election, but only the Lib Dems responded so far.

The party’s health spokesman Daisy Cooper said it planned to ‘fix broken supply chains to end the cycle of medicine shortages that is dangerous and anxiety-inducing for patients and exhausting and time-consuming for pharmacists and doctors’.

She said the party was keen to review the complex way pharmacies are funded, which contributes to supply chain problems.

The Department for Health and Social Care was approached for comment.



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