On Advocacy - a post for partners
As those of you who have been through it know it is very hard to advocate for oneself when you are barely able to speak for throwing up. Hyperemesis Gravidarum can come on very suddenly and in a matter of days take a woman from the happiest moment of her life, when she got a positive pregnancy test, to the absolute worse moment of her life to date when she hasn't stopped being sick for days and is genuinely fearful for her life.
It can be overwhelmingly scary and with such mixed emotions. Women can feel utterly lost and confused by what is happening – surely this isn't “normal morning sickness”. It's bad enough after a few days but after weeks and weeks of unrelenting nausea and vomiting few women have the strength to talk, let alone fight.
And that is where our partners can come in. In this post I hope to give partners (and by partners I'm referring to anyone in the main carer role, mothers, sisters, friends etc.), some tips about how to advocate for the sufferer.
Doctors can be kind of scary can't they? If you are not from a medical background then the chances are you look up to doctors and all their knowledge and have them on a bit of a pedestal. And rightly so – to a degree. They have been through years of education and training. They must be cleverer than the average person to have qualified and they know a damn sight more than you about anatomy, physiology, pharmacology, how the NHS works and so on. But they are not experts on EVERYTHING. They can't be, they are human. And remembering that will help empower you to have a rational discussion with them.
So, some practical tips for advocating for your loved one:
Go in with a good attitude. Don't assume that the doctor will be dismissive and don't assume that you will have to “fight” for treatment. If you are reasonable then they will have a hard time explaining why they are being unreasonable.
Prepare yourself in advance. Take notes in with you, in particular about her symptoms, your concerns and any questions.
How many times a day is she vomiting?
How much fluid and food has she kept down in 24/hrs?
How often is she weeing?
Has she lost much weight?
If she can't get down the stairs for dizziness and vomiting then note that down.
Is movement, sound and smell triggering vomiting?
Your concerns:What are your main worries? That she is severely dehydrated? That she has lost so much weight? That she is bedbound and getting sores or at risk of DVT? That if you leave her alone to go to work that she may fall down the stairs because she is so dizzy and weak? That you are both going to lose your jobs over this?
Questions:Is it safer to take medication or not? If she is not being admitted now then at what point should you be concerned that she needs to go to hospital? What signs and symptoms should you look out for that things are more serious? What is the best route for speaking to the GP, can you email or phone to speak to them? Could you help by monitoring her ketones at home? Could the nurse teach you to give her intramuscular injections of her meds for times that she can't manage oral ones? Is there any other support you can get with this? (well, you know the answer to that – PSS).
When you first go in, explain that your partner is finding it difficult to speak due to the symptoms and you would like to explain what's been going on. If he/she seems put out then go on to explain that just getting to the surgery has been a real struggle and she really would prefer you did the talking. He can always confirm that with her.
Using your notes as above explain that while you were both prepared for a bit of “morning sickness” and know it's a normal part of pregnancy you really don't think this severity is normal and you think she has Hyperemesis Gravidarum. Explain that whilst you had hoped to have a nice natural pregnancy, without medication and so on you really feel that she needs some treatment as the symptoms are so severe. You understand they aren't licensed for pregnancy but feel that when looked at from a risk/benefit perspective you both think the time has come to accept that she needs treatment.
Now assuming your doctor has reacted really well and is being kind and pro-active, ask for a plan going forward. He doesn't need to agree to more medication or anything yet but he needs to let you know what symptom severity to look out for and when to come back if things don't improve. If he is sending you home rather than hospital then ask what he would like you to monitor, ie. Fluid intake/output, weight loss, ketones in her urine - he can prescribe ketosticks for this or you can buy them yourself online Ketostix Reagent Strips Ketone - 50 strips
Hopefully by following these steps you will develop a good working relationship with your GP and feel that you have managed to help your loved one by getting her treatment and support. But what if it doesn't go to plan as above. What if despite your careful description of her symptoms and your concerns you are met with “It's normal” or “No medication is safe in pregnancy”.
Well if the doctor is trying to claim it is normal then ask at what point they would consider severe nausea and vomiting to not be normal and what level of dehydration they consider acceptable for a pregnant woman.
If they give you grief about taking medication in pregnancy and claim it isn't safe and you might be damaging the baby. Ask for the evidence base for such claims and point out that there is far more evidence that not treating HG effectively has greater risks for the baby and mother than treating with medications for which there is no evidence of adverse foetal outcomes (you might want to write that down).
Remember that GP's generally don't know what the next patient to walk through the door is suffering with until they sit down and tell them. HG is not particularly common with many GP's seeing one or two cases a year and they can't keep up to date with all of the research about every condition. So try to be sympathetic to that, perhaps sign post them to the charity pages about treatments and perhaps offer to give them some time to look into the options, you could phone back in the afternoon or pick a prescription up later.
Recognise too that getting the treatment right can be a case of trial and error so always ask for advice on how long to give the medication to work and what to do if there is no improvement, or she gets side effects or deteriorates. GP's can feel frustrated if a patient is expecting a cure from them when there is no cure to give. Accepting that there is no cure, yet, and that you need to look to “manage” the condition will help no end.
The aim of the game is to build up a team feeling with the GP make it clear you want to work with them to help your partner and don't expect a quick solution from them.
Ultimately though, if you don't feel you've been treated well or got the help you need then ask to see someone else. Go out to reception and ask for another appointment with someone else. If you have the strength and feel you have grounds you could ask to speak to the practice manager or make a complaint. But keep it in perspective. Getting help for you partner needs to come first.
Don't forget, PSS have a helpline number you can call, leave a message and one of the Charity doctors will call you back: 024 7638 2020