Doctor refusing to treat me what are my rights

[MysteryMoose]

Hi I'm not really sure what info to put here but I need help with my legal rights.

Basically my mental health collapsed in September. I was very depressed. GP referred to Mental health. Mental health bounced me back to GP. Went to GP. They put me on Citalopram and referred back to MH. Within 2 weeks I was having a manic episode and have been struggling with mixed mania (feeling like life is pointless but all the energy of mania) ever since. Community MH refused to treat. Left me in that state for 6 weeks. They bounced me to perinatal who bounced me back to MH as my daughter was approaching age 1.
Now SS are involved. MH still refusing to give me the "proper" amount of antipsychotics, they have me on a joke dose (5mg olanzapine) that isn't controlling the issue, and they are refusing to give me my ADHD medication because I'm breastfeeding.

I have a letter from the perinatal psychiatrist saying that the "benefit outweighs the risk" and recommending that I start ADHD meds back in October but MH said "that's just a recommendation".

I have never been a self harmer but I've been suicidally manic since October and have now attempted to end it 7 times. Crisis team bounced back to CMH, CMH still refusing to take responsibility or actually do anything.

I have racked up £12,000 worth of debt from the mania, had arguments in the street with my husband (I have never had an argument in my life before, I'm usually very quiet), and harmed myself.

Legally, if they are refusing to treat, surely they have to refer me to someone who will, right? Article 3 of the human rights act says I can't be subject to inhuman or degrading treatment including witholding medication and other neglect, but how does that translate to actually getting someone to do something about this? I am trying to stop breastfeeding but as the perinatal psychiatrist noted, without that ADHD medication I just can't organise feeding times.

Additionally, they have said that if I do come back to them and say I've stopped breastfeeding, they want a signed letter from my husband saying I really have, and they have also said they will want to test my prolactin levels (despite the fact these are unlikely to go back to normal for at least 6 months to 1 year even if I wasn't on olanzapine). I have capacity. I asked if a man had ADHD and bipolar would they ask a man's wife to sign a letter like this and they just blustered. It was humiliating and infantilizing as all fuck.

I'd like to add that according to Lactmed, the medication itself isn't contraindicated for breastfeeding and serum levels are undetectable: www.ncbi.nlm.nih.gov/books/NBK501310/
www.ncbi.nlm.nih.gov/books/NBK501056/

www.nice.org.uk/guidance/cg192/chapter/Recommendations#treatment-decisions-advice-and-monitoring-for-women-who-are-planning-a-pregnancy-are-pregnant-or

I've screenshot the part I think is most useful about medication and decisions.

www.nice.org.uk/corporate/ecd4/resources/accessing-nhs-care-and-treatment-recommended-by-nice-pdf-1124012418757

This sets out your legal rights as per the nhs constitution.

Hope this is of some help.

The perinatal consultant should have the final say being the specialist in this field.
Additionally the community mental health transformation programme (as part of the nhs long term plan) indicates perinatal services should be aiming to work with mothers up to 24 months post birth, I think some services are just catching up with this and it is dependent on area and commissioning arrangements but as far as I understand if there is still a need at the 12 month stage they shouldn’t just discharge you - especially if there are additional concerns. Maybe ask your SW to set up a meeting if this hasn’t already been done. I would definitely go to PALS too as FP have said.

What age/s are the other children?

I suspect other posters asking where your husband is on this have missed the fact you referred to 'children' rather than 'child'.

Having worked in Social Services for 40+ years I'd be surprised if he is not already occupied with their care to prevent Social Services seeking a Place of Safety for them whilst you are not appropriately medicated.

How does Social Services' concern for your children factor into your bigger picture of continuing to insist on breastfeeding your youngest child?

Is it worth the trauma of your older child/ren seeing and dealing with an unmedicated mother who is determined to continue breastfeeding their sibling whilst potentially putting them at risk? If you can't handle the schedule of bottle feeds, how are your other children fed? Ad hoc? As you remember? When they start crying? They feed themselves?

As harsh as this sounds, and I know it does sound harsh, I think it's time to put all of your children first so that they can have the best mother available to them.

If you were my friend/sister/niece the above is what I'd be saying to you.

Sorry if this has already been mentioned but I would contact The Breastfeeding Network and ask their advice. If they can help provide evidence in your favour I would take that and the letter from the perinatal psychiatrist to either PALS or a solicitor that specialises in healthcare.

I do think your problem will be that you can't make them prescribe you something that they can make a reasonable claim isn't recommended when breastfeeding. They're entitled to their own clinical view even if it's different from the peri natal view. I'm not saying that's fair or right but I think you'll struggle legally. You'd be much better off taking the peri natal letter to a pro breastfeeding psychiatrist and paying private.

Not a psychiatrist but just to be clear were you on methylphenidate prior to becoming pregnant and then discontinue in pregnancy? Or did you discontinue only when breastfeeding? Has it only ever been recommended by the psychiatrist who diagnosed your ADHD? It's not an easy med to manage in adults and I would expect if/ when you decided to discontinue it a plan to be agreed if you needed to resume it.

It's just odd that the CMHT wd prescribe olanzapine, even at 5mg, which is still a powerful drug whilst being cautious about methylphenidate. I am wondering if they are querying the overall clinical picture here - did you have the diagnosis of bipolar before the diagnosis of ADHD?

I am not querying any diagnosis myself - am a psychologist not psychiatrist in any event. BUT I do wonder if the breastfeeding issue is being overstated in what is actually a clinically complex case. Methylphenidate is clinically contraindicated in bipolar or any major mood disorder. If you already have symptoms of mania severe enough to need olanzapine I can see why any psychiatrist would be reluctant to prescribe it.

Legally you cannot compel any doctor to override their clinical judgement - i.e. if your current treating psychiatrist does not think methylphenidate is in your clinical best interests you cannot force them to prescribe it.

They should not however, confuse matters, or imply breastfeeding is the barrier if it is not. They should clearly communicate refusal.

If social services are involved I would be surprised if you do not meet the threshold for independent mental health advocacy - in England this is a statutory service, all areas have to have it but it isn't equally available to all patients. Having an independent advocate attend meetings with you might be helpful so I would recommend says asking about this again.

Agreed that having an advocate is useful. It would at the very least be like having someone who is less emotionally involved in the issues to listen and mediate. Same as having a partner/friend when you are discussing any other sort of treatment/diagnosis. Whatever power dynamics are involved are seen at one remove by the advocate who can feedback to both you and the MH team and could also help you work out if there is any additional resources you can access. They can do a power of good as can social services who want to work with families

The only practical advice I can give you is;

Get your husband to make up feeds, chill them with date and time and put them in the fridge. Do 24 hours at a time.

If regulations have changed get the ready mixed milk cartons.

Then completely stop breast feeding.

Either you or your husband set guide reminders in your phones to check feeding. If she usually feeds every 3-4 hours set a prompting reminder.

The sooner you stop breast feeding to enable meds to start up again the better. How you are functioning without regular support and medication is beyond me.

Your baby will still thrive on formula. Your health is paramount.

Can you sit in the waiting room of the CMHS and refuse to move until they see you?

So sorry you are going through this. What a mess.

Your situation seems very complex and I think you need proper legal advice. If you can’t afford this, have you tried Citizens Advice or MIND who have a legal advice section on their website. You need to talk to a professional

The GP would not normally prescribe in this instance. It would need to come from a psychiatrist. I am surprised they recommended breastfeed whilst taking adhd medication as is similar to amphetamines.

You’ve literally posted the NHS guidelines that quote breastfeeding into their 2nd year and beyond.
WHO & UNICEF - 2 yrs +

And whilst I completely understand that for many mothers with mental health disorders may need to stop breastfeeding earlier than is recommended, breastfeeding mothers also have the right to informed care…and that’s what @MysteryMoose was trying to get - informed information about the practical & legal side of her care & treatment.

Well I went away for a few hours and this has turned into a pile on hasn't it.
I wanted legal advice not the usual rent-a-mob who love to downtread people.

I'm not engaging with the people who have made up their own shit to suit their narrative. Particularly the ones pole-vaulting to conclusions there in the name of having a go at someone who is already regularly trying to unalive themselves. Very responsible.

Thanks to the posters who are genuinely coming at this from a helpful place. I am going to leave this up in case it helps other mothers in a similar situation to at least know that Mumsnet isn't a place for anyone slightly fragile to discuss maternal mental health.

I must admit though I think it's preposterous that society keeps banging the drum that we need better awareness and care of people with mental illness and that there's no stigma these days but as seen on this thread there's actually quite a lot of stigma. It's another case of people inventing risk to keep mothers in their place.

It’s actually contraindicated in patients who suffer from mania, psychosis, severe depression, suicidal tendencies and uncontrolled bi-polar disorder so I think you’ll struggle to get anyone to prescribe it atm as it would be off license?

There should be other things they can give you to help though.

Can husband be in charge of washing bottles and making up 3 or 4 bottles of cows milk per day to be kept in fridge

when you need one they are there to be warmed up. Even If he is at work full time it’s a five minute job every 24 hours. Plus buying milk.

@MysteryMoose I am sorry everything is so shit at the moment. I really hope that some of the more helpful advice on this thread will be of some use to you and you are able to find a more sympathetic and understanding MH/Dr combo who will provide you with the balance of meds you need in order to keep going. It sounds incredibly tough, I think you sound really brave.

That and it sounds like the bipolar was diagnosed on the NHS whereas the ADHD diagnosis is private. The NHS psychiatrist will only go with the NHS diagnosis.

The majority of mental health services are not commissioned to treat ADHD so whilst the psychiatrists can theoretically prescribe medication to treat ADHD they are not allowed to do so under local policy. No psychiatrist (especially when not their speciality) is going to prescribe amphetamine based medication for someone who appears manic, instead they will prescribe medication in order to reduce the mania e.g. olanzapine. That's without the added complication of breastfeeding.

It may be more effective to stick with the olanzapine, 5mg is a reasonable start for anyone who is neuroleptic naïve. There is plenty of room to increase this if needed. Once this medication has stabilised things a bit hopefully you will be further into the waiting list for which ever service is commissioned to deal with ADHD locally.

@OllytheCollie Thank you yes it has been recommended by the psychiatrist who diagnosed me and the perinatal psychiatrist. The most recent private psychiatrist has also recommended it but there's an 18 week wait on getting into their titration team as they now do a lot of Right To Choose work for ADHD diagnosis for the NHS. That last one thought a small dose would help offset the depressive side of olanzapine and was open to trying non-stimulants as well. Unfortunately in the meantime I've maxed out my credit card and don't have access to any further money for the time being.

THANK YOU this is the exact situation, it's not something that any doctor can prescribe or necessarily any given psychiatrist. And yes I would like to keep with the olanzapine as it's taken the top off the mania and I generally tolerate it well (aside from gaining 6kg in 4 weeks but oh well), but it's not doing a lot for the depression so I've had a couple of serious incidents since starting it and the private psychiatrist suggested that a small dose of ADHD medication would take the bottoms off those low moods as well as help me focus, care for my child better and generally get my life back together.

This is terrible OP, I'm so sorry this is happening to you. I can understand how you feel infantilised, and if there's no medical reason to do so, you shouldn't have to give up breastfeeding if you don't feel it's the right time for you and LO.

Can you contact breastfeeding organisations and ask them to email you evidence of the medication not being present in breast milk? I bf-ed and I remember the GP treating me with disdain purely because of that. He wouldn't or couldn't give me info I needed when I needed a medication, and I had to contact a bf organisation. I think people, Inc medical staff are still misinformed about bfing and especially if you're bfing after the first 6 months, even though the evidence does support bfing for as long as you're both happy to.

Anyway, I think you should look into making a complaint and possibly seeking private healthcare or changing GPs if that would help. You can also try to find an advocate, not because you aren't able to advocate for yourself, but because you aren't being listened to. Maybe other outside scrutiny such as your MP could help too?

Yes, it says its ideal. Not that its necessary.
In an ideal world, the OP would not need very powerful medication because she would not have ADHD, psychosis, suicidal thoughts or depression. Her situation is as far from ideal as it can get.
But hey, those who think mothers are just shit if they don't breastfeed their babies for years, dont let the grim realities of some very unwell women get in the way of your ideology.

Of course it’s ideal and not necessary. My Nan fed her babies minced beef and potatoes at 3 months & they survived fine but quite a few people on this thread had said ‘you should stop breastfeeding’ and ‘stop breastfeeding’ and ‘a 1 yr old doesn’t need it for nutritional reasons’ etc. I was merely stating that it IS proven to be nutritionally beneficial for a 1yr old to breastfeed.

As a fully trained breastfeeding peer supporter, doula and former student midwife, I can say with confidence mothers are not shit if they don’t breastfeed their babies for years.

I read the OP’s post and took from it that she wanted to look at all her options - one of which catered for her continuing to breastfeed (at least whilst she was trying to wean) and also have suitable meds that she’s currently being refused without further discussion.

This thread is ridiculous. The baby is 1. There is absolutely no need to be breastfeeding, if by breastfeeding and not taking the required medication you are a danger to yourself. If you can’t make up bottles safely you can’t look after a child safety and someone needs to step in at this point.

@Intrepidescape the OP has already been back to the thread to confirm the prescribing issues here are complex. Breastfeeding complicates matters but probably isn't the main or even a major barrier to prescription.

@MysteryMoose is experiencing very serious illness whilst caring for a young child. Anyone who either has experienced MH care or works in the field can confirm that getting good information to make clear decisions is exceptionally difficult at the best of times. She is grappling with multiple referrals and comorbid conditions. She wanted information on her rights for clarity.

People on both sides on this thread turned this into a debate about whether she should stop breastfeeding. She had not asked that and it is in no way relevant to her health or her child's health or to her rights. In reality the drug is not likely to be prescribed straightaway even if she stops breastfeeding.

Implying she wants to harm a vulnerable child by taking powerful drugs whilst breastfeeding is stigmatising and absolutely inappropriate. @MysteryMoose has said she is experiencing suicidal ideation. Every decision she has to take is serious and needs to be treated with compassion and respect.

The group I referenced does indeed support people to continue breastfeeding, if that's what they want. But it also is a place where people have experience of complex issues around breastfeeding e.g. legal issues, medicines and breastfeeding, and a place for a support and advice for ending breastfeeding.