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How to Access the Treatment You Want

Diagnosis - You should have been referred by your GP for an ultrasound scan to diagnose your fibroids and then if your fibroid(s) are larger than 3cm to a fibroid outpatient clinic.  If you haven’t had a proper diagnosis or want a second opinion you are entitled to these, so ask your GP for a referral.

 

 

 

Fibroid Clinic - Ideally, you should be referred to a ‘multi-disciplinary’ fibroid outpatient clinic, run by both gynaecologists and interventional radiologists.  This represents best clinical practice.   If your hospital fibroids clinic is only run by gynaecologists please ask the hospital why.  Gynaecologists have no training or education on the safer, less invasive treatments offered by interventional radiologists – UAE/UFE (uterine artery/fibroid embolisation) and MRgFUS (magnet resonance-guided focused ultrasound), where this is available.

 

 

 

Information Leaflets Before Your Outpatient Appointment - You should be sent information leaflets on all the treatment options for fibroids – hysterectomy, UAE and myomectomy {NICE Heavy Menstrual Bleeding Guidelines 2007 (which includes fibroids)] before your outpatient appointment so you can read these before your appointment and ask informed questions.  However, although this is a recommendation by NICE very few hospitals actually do this and they also don’t monitor what patients are told, so do complain if this doesn’t happen or if you feel the information you are given is inadequate, incomplete or not objective.

 

 

 

Multi-Disciplinary Fibroid Clinic - If your local hospital has a fibroid clinic run by both gynaecologists and interventional radiologists please do discuss all the treatment options with them so you can make an informed choice about the one that suits you.  Don’t be afraid to ask about the safety - mortality and morbidity – complications, side effects etc of each procedure, fertility, time in hospital, time getting back to work, driving, support needed from a family member etc. Please also ask them about their own safety record and experience.

 

 

 

Gynae Run Fibroid Clinic - If you are referred to a fibroid clinic run only by gynaecologists they will have insufficient knowledge about UAE to advise you, although this often doesn’t stop them telling women that they are unsuitable for UAE, when they are not and that ‘hysterectomy is their only option’ when it is not.  Unless you have been given very comprehensive information on all the treatment options, and are totally satisfied that surgery is what you want, ask to be referred to the interventional radiologist, either in the same hospital if they offer UAE or one nearby that does.  See ‘Treatment Centres’ Section of this web site

 

 

 

Referral to Interventional Radiologist - Do not make your final decision until you have had the opportunity to discuss UAE with an interventional radiologist.  You may need an MRI scan before seeing the interventional radiologist, as ultrasound often does not give sufficient detail of the size, number, type or position of fibroids and neither does hysteroscopy, which cannot diagnose any fibroids outside the uterus. A referral to an interventional radiologist or for a second opinion, or to another hospital or consultant is your right.  If the gynaecologists is not helpful then ask your GP or failing that your CCG (Clinical Commissioning Group).

 

 

 

Informed Choice – The Treatment that Suits You - Please then consider all the information you have and make an informed choice about the treatment that suits you.  Remember you have to live with the consequences, not the doctor.  To us any operation is a life-changing event.  To hospital doctors it is an everyday event.  Do not be pressurized or bullied into a treatment you do not want.  You must be treated with respect and dignity.   If you feel pressurized ask to be referred to another doctor and make a complaint, otherwise the same will happen to the next women.  You GP cannot make the decision for you, nor can the consultant.

 

 

 

Your Rights - You have rights under the NHS Constitution to be properly, fully and objectively informed about all your treatments options, to get a second opinion and to be involved in the decisions about your own care.

 

 

 

The NHS Constitution -

 

You have the right to be given information about the test and treatment options available to you, what they involve and their risks and benefits.

 

 

 

Informed choice

 

Your rights The NHS also pledges to:

 

inform you about the healthcare services available to you, locally and nationally

 

offer you easily accessible, reliable and relevant information in a form you can understand, and support to use it. This will enable you to participate fully in your own healthcare decisions and to support you in making choices. This will include information on the range and quality of clinical services where there is robust and accurate information available

 

https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england

 

 

 

NHS England Shared Decision Making  https://www.england.nhs.uk/ourwork/pe/sdm/

 

No decision about me, without me. This can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone.

 

Shared Decision Making is a process in which patients, when they reach a decision crossroads in their health care, can review all the treatment options available to them and participate actively with their healthcare professional in making that decision.

 

With current, clinical information, relevant to their particular condition, about all the options available to them patients are helped to work through any questions they may have, explore the options available, and take a treatment route which best suits their needs and preferences.

 

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