Earlier this year, we were made aware of a shortage of desmopressin 10 microgram / dose nasal spray. Since then, we have heard from many members of our community about the significant impact that this shortage has had on themselves and their loved ones.

We want to better understand the impact of this shortage and are asking for people to fill out this short survey. This survey should take around 5 minutes to complete and your responses will be completely anonymous.

Please note, information you provide in this survey may be shared externally with other organisations, such as pharmaceutical companies, healthcare professionals, government organisations and other charities. This information will form part of a wider effort to address this shortage and the issues it has caused, and your responses will remain completely anonymous. By completing this survey, you are agreeing to have your responses shared with third-parties, as outline above. 

Please only complete this survey if the following applies:

• You live in the UK (and so are users of the NHS) and are aged 18 or over
• Have a diagnosed condition that requires treatment with desmopressin (such as AVP deficiency, previously diabetes insipidus). Please note, you can also fill out this survey on behalf of someone else who this applies to
• Have been affected by the shortage of desmopressin 10 microgram / dose nasal spray

This survey will be open until Thursday 26th June 2025.

More information on this shortage can be found here. If you have any questions about this survey, please contact [email protected].

We have received feedback that some people are only being provided with prescriptions for 28 day / 1 month supplies of the following vital medications:

• Hydrocortisone (in its various forms)
• Desmopressin
• Levothyroxine
• Prednisolone
• Testosterone
• Oestrogen

We believe it is important that people receive prescriptions for longer than this (ideally 3 months or more). This helps prevent you from running out of vital medications and avoids further inconvenience with the regularity of requests.

We would like to understand how many people are affected by this issue. Therefore, we are asking our community to fill out this survey to provide information about what length of prescription you currently receive.

This survey should take around 2 minutes to complete and is anonymous (unless you choose to provide contact details).  

Please note, if you receive prescriptions for more than 1 of the vital medications listed above and these prescriptions are for different lengths (e.g. a 1-month supply of hydrocortisone and a 3-month supply of testosterone), please answer the survey in relation to the shortest prescription you receive. 

To better understand this issue, we are collaborating with Addison’s Disease Self-Help Group, who are also carrying out a similar survey. Please only answer one of these surveys.

We'd love to hear from you if:

• You are over 18 and
• You live in the UK (so are users of the NHS) and
• You have a diagnosis of a pituitary condition that requires management with one (or more) of the medications listed above

Overview of the current situation

Earlier this year, we received notification of a medication shortage affecting supply of desmopressin nasal spray. This shortage is expected to be in place until September 2025 and will likely have significant impacts for our community members. You can read more about this shortage here.

Since then, we have received numerous messages of concern from our community, who are understandably worried about the impact that this supply shortage will have, either for themselves or their loved ones.

What we're doing

As a patient advocacy and support organisation, pushing for action on behalf of our community is an important part of what we do. In April of this year, we sent a letter to the Secretary of State for Health and Social Care, Wes Streeting, to raise our concerns about this supply issue and the physical and psychological impacts this is having on our community. We also queried what steps had been taken to prevent this and what was now being done to resolve the situation.

This letter was endorsed by the Society for Endocrinology and was co-signed by members of our Medical Committee, including Professor Stephanie Baldeweg, Professor John Wass, and Dr Robert Murray.

We will continue to provide updates on this situation and will look for further ways to advocate on behalf of our community members.

Where can I find more support?

We understand that medication shortages can cause a lot of stress and worry. If you would like to talk to someone or have queries about how this shortage may affect you, please get in touch with one of our helplines.

For more information and support, please also visit our psychological support page.