5 December 2023 News

Tuesday 5 December 2023

We have received a response from the Department of Health and Social Care to our written parliamentary question:

On 24 November, we asked the Secretary of State for Health and Social Care, Victoria Atkins, what steps her Department is taking to tackle shortages of Riluzole; and whether she plans to issue guidance to (a) local NHS Trusts and (b) prescribers to help ensure patients are able to access treatment for motor neurone disease.  

We received the following response on 30 November: "We are aware that one of the suppliers of riluzole 50 milligram tablets is experiencing a supply issue. However, alternative suppliers have stock available. We are working closely with all the relevant manufacturers to expedite deliveries, where possible, to ensure supplies remain available for patients in the United Kingdom.

We have well-established processes for managing and mitigating medicine supply issues, which involve working with the pharmaceutical industry, the Medicines and Healthcare products Regulatory Agency, NHS England, the devolved governments and others operating in the supply chain to help ensure patients have access to the treatments they need."

Despite these reassurances, we are aware some people with MND are continuing to experience challenges in accessing riluzole. We have shared that evidence with the team at DHSC and requested an urgent meeting to discuss this further.


Thursday 30 November 2023
On Friday 24 November, we were informed that an alternative riluzole supplier had been sourced. This response suggested the situation with riluzole supply seemed to be improving.

Over recent days, however, the MND Association has continued to receive reports from people with MND, doctors and regional care teams that riluzole supply is still a problem. 

It is clear this is a complicated and mixed picture and we have not yet received satisfactory information that reassures us the situation is being effectively addressed. We are continuing to discuss this with a number of stakeholders and have urgently requested a meeting with the Department of Health and Social Care (DHSC) to ensure the situation is resolved as soon as possible. We have also raised our concerns through the All Party Parliamentary Group for MND and are expecting a response to a Parliamentary Question.

We will update you when we know more about this ever-changing situation. 

In the meantime, we are keen to continue to monitor and understand the scale and extent of the problem. Please share your experience with your Area Support Coordinator or Service Development Manager. 

We know this is a worrying time for many people. Please be reassured we are doing everything we can to resolve the issue, this includes liaising with MND Care Centres and Networks impacted by the shortages. It is not acceptable that people with MND are facing challenges sourcing riluzole, the only approved medication for people with the disease. We will not stop until we know new stocks of medication have reached pharmacies for people with MND to access. 

Tuesday 14 November 2023

Since our last update, people with MND in certain areas of the country have continued to face challenges accessing riluzole. This is despite reassurances we received from the Department of Health and Social Care (DHSC) medicines supply team that stocks would be replenished during the week commencing 30 October. 

In some circumstances people have had to travel to several pharmacies, while some have had to request an alternative riluzole preparation.  
We recognise this is worrying for people. Riluzole is the only licensed medication for people with MND and it is vital people are able to access it easily in the formulation they are comfortable with. 

We have been in regular contact with the DHSC but unfortunately haven’t received the information we need. 
As a result, we will now be raising the issue with Government representatives this week to escalate our concerns and achieve a resolution. 
In the meantime, if you face any challenges with accessing riluzole please speak to your neurologist or GP. 

Alongside concerns about riluzole, we have also been made aware of an issue with the supply of suction tubing used for secretion management. We have been told by NHS England supply chain teams this is a global supply challenge caused by a manufacturer ceasing business. A process has been introduced to manage the demand and supply of the tubing to ensure it remains available to those who need it.  
Other manufacturers are now scaling up production and it is expected that the full supply chain will be operating as usual by March next year. 

Tuesday 24 October 2023

The MND Association has been working with medicine supply agencies and MND Care Centres and Networks since receiving reports of a shortage of riluzole, currently the only treatment available for people with MND. 

We have been assured by the Department of Health and Social Care (DHSC) medicines supply team that new stocks of the medication will be distributed to pharmacies this week (week commencing 23 October)*

Shortages of the generic tablet form of the medication have been reported at pharmacies in central, west and south east of England over the last month. 

Our MND Connect helpline has received a number of calls and emails from people with MND whose usual pharmacy hasn’t been able to fulfil their prescription. We have been advising people to contact their GP or neurologist directly to request an alternative riluzole preparation. 

As soon as we became aware of the issue, the Association raised the shortage as a matter of urgency with the Department of Health and Social Care medicines supply team and has been in regular contact since. 

We have also been in communication with the 22 MND Care Centres and Networks, which we help support with funding, to advise them of the situation, let them know what guidance we are giving people with MND and keep them updated on our dealings with the DHSC.  

The Association’s Acting Director of Care Improvement Sally Hughes said: “This is very worrying for those people with MND who have been struggling to find a pharmacy to provide them with riluzole. Our understanding is that people have been supported by their clinicians to find alternative pharmacies or been prescribed a different form of the medication.  

“Of course the ideal situation is that everyone is able to source exactly what they have been prescribed with minimal effort. The DHSC has assured us stocks will be replenished this week – we will continue to liaise with them until we are confident that is the case.” 

Thursday 26 October 2023 

Today (26 October) we have been informed by the Department of Health and Social Care (DHSC) that stocks of riluzole will reach UK wholesalers next week (week commencing 30 October). The MND Association will continue communicating regularly with the DHSC for further updates and to find out what has caused the shortages.