"Significant impact on wellbeing due to unreliable supply of oestrogen implants"

About: Dr Gray's Hospital / Women's Services

(as the patient),

As a patient who has undergone a full hysterectomy at 34 I require HRT as a vital component to my health and wellbeing. This goes much further than protecting my bones from osteoporosis as it is especially important in maintaining my mood and preventing debilitating migraines. Both of these threaten to prevent me working, contributing to my community, and being able to meet my caring responsibilities. These were also the key catalysts for having the life changing operation in the first place and can not be underestimated in terms of life-limiting symptoms, which include suicidal thought and stroke like symptoms.

Since before my operation I have received care under a very approachable, compassionate and knowledgeable consultant who I feel works with me as a true partner in my care – I feel extremely fortunate to have such medical support and would praise his approach in terms of empowering patients. Together we have explored the hormone treatments available, and through trial and error have concluded that I can’t absorb HRT topically and can only receive my treatment via Oestradiol implants. I have received three of these implants in the last year and we now realise I need a stronger dose through the monitoring of my bloods alongside symptom recording.

Unfortunately, administering implants is not straightforward due to challenges out with both of our control. My understanding is that supplies of implants are extremely unreliable and that there is no stock of them at all with which to treat me in Moray. I am therefore currently in limbo, with a hormone level that is causing my negative symptoms which worsen by the week as my levels drop, whilst my consultant does his best to secure some supplies of any dosage just to keep me functioning for the time being.

This is an unacceptably precarious situation to face in terms of my wellbeing and also frustrating for the medial team working to support me - I am unable to plan weeks and months in to the future as I have no knowledge if supplies will continue, and if supplies are found when they will arrive. This situation will not resolve itself as I will need hormone support for potentially another 20 plus years, if not my life course as research in to this area increases. Nor is this situation a minor inconvenience – I can not choose another medication to give me the levels I require, nor do I think I will have quality of life without medication.

I am aware that other NHS boards are challenged in finding stocks, but I also know that some do have them and that private clinics in the UK also have stocks. This very much feels like a postcode lottery in terms of treatment. It also feels like a feminist issue – would supplies of other drugs being in such a precarious supply be acceptable or is it because this is for the treatment of menopausal women who may not feel fully empowered to advocate for better care? It is not cost affective to our society to have menopausal women unable to function fully, self-care and contribute. I am quite sure that without treatment I am a greater financial burden on our health and care system.

Additionally there is the challenge of accessing proper supplies of testosterone medications for women – I have not yet been exploring this as part of my treatment, although I am aware that it is also a key element in healthy hormone function for women and may help my symptoms, but firstly my oestrogen must be addressed and supplies of the medication stabilised.

Going forward from this I would like to ask the local health board to clarify the situation for Oestradiol implants (50 and 100mg) in writing, remedy the supply issue in collaboration with other boards in Scotland and the UK, and secure my treatment allowing me to live a full life.

Again I would like to thank my consultant for his excellent and compassionate care, the team at Dr Grays who supported my hysterectomy operation (especially the pain nurse and the anaesthetist) and my GP for supporting monthly phlebotomy appointments to monitor hormone levels.

I look forward to your response and thank you for taking the time to read my experiences.

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Response from Linda Oldroyd, Nurse Consultant, Person Centred Care, NHS Grampian

Dear patient

Firstly let me thank you for bringing this matter to our attention and also for your kind words about your Consultant and the staff at Dr Grays Hospital.

This is an area I have no expertise in and will need to share your story with others to try to find answers to your questions.

NHS Scotland operates a national procurement scheme so I am not surprised that this issue is not specific to NHS Grampain.

I hope you can bear with us until we look into your concerns and that in the meantime you are not suffering too severly from your symptoms.

Kind regards,

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Update posted by patient321 (the patient)

Thank you for such a swift and compassionate reply. I am glad to hear that you will be taking this to others to find out the answers.

My symptoms are worsening day by day as my hormone levels decrease, and this is causing issues to my wellbeing and concern regarding my ability to continue working in future weeks. However, whilst I have the ability I am doing my best to self-advocate on this matter, for myself and others in similar positions.

I have learned that production of Oestogen implants stopped in the uk in 2011 and testosterone for women in 2012, and that there was a strong campaign by professionals to compel them to restart production at the time. That company did not put these back in to production, but there are similar implants available in the US and Australia. These are not licensed for use in the UK and this is the key issue.

There also seems to be a lack of awareness that gels, patches and tablets are not suitable for all women. This therefore is not seen to be a priority for the NHS as awareness needs to be raised that this medication needs brought back on line.

I hope this extra information helps you going forward in your enquiries.

Response from Linda Oldroyd, Nurse Consultant, Person Centred Care, NHS Grampian

Dear Patient

Many apologies for the delay in getting back to you. As suspected and as you know already, this is not a local issue. Our Lead Pharmacist has been able to provide the following information:

We MAY have found another supplier. The product still has to be imported from the United States. The product looks like the same product we had before in terms of packaging etc. but the manufacturer appears to be different. The certificate of analysis is similar to previous product.

We will let you know when the supplier is confirmed. However we do need to make you aware that the supply remains uncertain due to the complexities of sourcing such a product from abroad. The original licenesed product was withdrawn leaving only an unlicensed product option.

There are two other Health Boards in Scotland using this product and we are trying to help each other with sourcing.

I hope this information gives you some comfort in that we are doing our best to help this situation.

In the meantime please get in touch again if there is anything else you think we should be doing.

Kind regards,

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Update posted by patient321 (the patient)

Thank you for this reply and to the excellent work of your colleagues in sourcing this supply.

Having had a very useful meeting with my consultant last week, I am aware of the work he and the lead pharmacist have been taking, and appreciate the proactive approach they have taking in trying to solve this challenge. They have been very open to working with me and taking on board my input, including research via my wider peer support network regarding sources that other patients have located.

I feel strongly that such an approach, which recognises expertise on both sides - expertise of motivated professionals alongside an expert by experience - has led to a positive outcome in this case.

I appreciate that we do not yet have this medication in hand, nor do we know how reliable a supply may be for the future, however I look forward to further updates regarding this and feel reassured that everyone is doing their best in this challenging situation.

Many thanks also for your considered and timely responses.