What were the barriers you/ your partner faced in getting good treatment & care?

[andrea_at_app]

What or who (no names) were the obstacles that delayed you getting correct treatment, correct diagnosis, good care or added to the confusion / turmoil or hindered your/your partner's recovery in any way? Please add & keep adding any you can think of. Just brief sentences or bullet points will be great. If any of yours are already listed, please do add yours too - it'll be very interesting to see which ones appear most often. Thanks.

[Simon_at_APP APP]

A crisis team that had never seen pp. Being told it's better to treat at home and to take her for walks to try and keep some reality in her life (that didn't work by the way).

Not being told about MBUs for over 2 weeks, even though we were lucky enough to be fairly near one and that they were keeping a bed for my wife! This left me caring for my wife 24/7 and the extra stresses and worry that brings.

When we finally got into the MBU we were told that my wife should have been here at the start, as it is likely that things wouldn't have got so bad.

[andrea_at_app Volunteer APP in reply to Simon_at_APP]

My crisis team had no experience of PP either. I wonder if they have training specific to PP? Professionals not knowing or passing on what services are available locally is a huge barrier!

[kellbell]

Home treatment team with no experience of pp. When my mum asked them if I was being treated for pp or pnd following a visitto my house they said theywere theyto check their notes.

we weren't offered a space in mbu for a month & my children were sent to grandparents while my husband tried to treat me at home. The treatment team didn't seem interested in concern expressed by family members.

The mbu was great but being with other patients in the mbu at times hindered my progress as we were all at different stages of recovery. That said we were also able to help each other at times in the mbu.

[andrea_at_app Volunteer APP in reply to kellbell]

Gosh, it's so hard when the people responsible for you care don't understand your illness at all or know what you're going through & it's really tough waiting a month for a place in an MBU! Good to hear the MBU was great once you got there though.

[Lilybeth Volunteer]

No MBU's in my time.

When I moved in to stay with parents my GP would not come out to see me as I was then out of his area (although it wasn't miles away).

My parents' GP would not come out as I wasn't his patient!

[andrea_at_app Volunteer APP in reply to Lilybeth]

I wish all professionals knew that PP should be treated as the psychiatric emergency it is. It's awful to be in crisis & not be able to get the help you need.

[Naomi_at_app Volunteer]

Lack of an MBU within reasonable travelling distance from home

General psychiatric ward staff lack of experience of PP. My treatment was very compassionate but nurses told my husband it would be months not weeks before I recovered.

No specialist team for recovery so my community mh team had to learn on the job which meant they offered a lot of support for me as a mental health service user but forgot about me as a mum and the parenting aspect of my recovery

Lack of specialist skills/knowledge of recovery from PP and separation from my baby in my HV team. They offered a lot of reassurance that I was 'doing fine' but little in the way of practical support with bonding with my baby or finding local groups to go to.

[andrea_at_app Volunteer APP in reply to Naomi_at_app]

The same goes for me with my care team learning about PP on the job. I think Health Visitors can play such an important part too with the practical parenting support, bonding, finding local groups etc. - all would've helped me 'rebuild' myself in the years it took me to recover & would've helped a great deal with my confidence & parenting skills.

[Ellie_at_APP Partner]

I guess I want to write to give another side - as in I think I got almost 'perfect' treatment, but want to write it in a way that everyone should get this.

I had very acute and sudden psychosis and I guess the positive side to it is that you get a diagnosis quickly, and swift treatment. A&E for 24 hours - great treatment, head midwife stayed with me almost all the time, they knew almost straight away what it was. They fought to get me into the better of two available MBU's (which cost more).

MBU was the best place to be - amazing support.

On return home I was with the early intervention team - their support was/is amazing including very regular meetings at the beginning with my mental health worker (at least weekly), and regular (weekly) but more often if I needed CBT with a psychologist, and obviously meetings with psychiatrist. We had a couple of family 'therapy' sort of sessions, and my partner was offered support from a mental health worker, though he didn't take it up. They also went to my return to work meeting with my supervisor when I was going back to work. In fact I am still under them until October (3 years) and its good to know I have their support if I need it.

The two negative things I would say - MBU was not that near home - 2 hours by train, we don't have a car. It meant my partner could only visit at weekends, and he had to pay to stay over, it was only financial help from family that ensured he could visit. It would have made things so much easier if MBU was closer, especially for my partner.

And the second would be the MBU were going to discharge me without me having any home visits, it sent me into a panic, and that's what started the depression. But who knows, something else could have triggered the depression, it would have been especially difficult if I had already been discharged and at home, so perhaps this was a blessing.

[andrea_at_app Volunteer APP in reply to Ellie_at_APP]

Thanks Sunnyandwild, it's great to hear about the good treatment you had - that it was recognised early & you had a place in an MBU (although it was 2hrs away). It's also good to hear you were offered CBT & family therapy sessions too. Feeling cut loose after being discharged from the MBU when you're still pretty fragile, doesn't sound good at all though!

[Kat_at_APP Volunteer]

Hi there - my experience is quite similar to S&W... As some may remember from my story, PP onset for me was well within 24hrs of birth - when I was still in the high dependency unit within the labour ward of a very large London hospital. It was apparently very obvious (once they had ruled out things like massive stroke or brain haemorrhage) that I was psychotic - and I was indisputably post partum!

The perinatal psychiatric team ("MAPPIM") were generally excellent. The only thing they did "wrong", in hindsight, was to allow me home after my first onset. I should have been transferred from labour ward to MBU. But nobody foresaw how extensive my psychosis and delirium were to become. I'd say practitioners should err on side of caution when it comes to discharging a new mum and baby, if anything terrible were to have happened it would've happened in the 2 days I was home. Luckily I was very closely supervised by my increasingly concerned husband and parents!

The only other barrier to care I experienced was much later, towards the end of my illness. None of the psychology or counselling available was offered to me. I wasn't well enough to ask for it, just grateful not to be psychotic any more, so I went home with just medication. Looking back, it would've been great to talk things over with a specialist psychologist or counsellor. I've had to deal with the odd flashback and panic attack, even now, and perhaps they could've helped me cope with them better. (I had my last formal meeting with the MBU psychiatrist last week, and she has now referred me for this - fingers crossed the wait isn't too long!)

Other than that I have enjoyed fantastic care: specialised, knowledgable, compassionate and inclusive of my baby and family life.

Kathryn xxx

[Ellie_at_APP Partner in reply to Kat_at_APP]

KatG - am surprised you weren't offered support when you were at home? You must have been under a team? did you meet them regularly? I think I was lucky to be with early intervention team, I remember right at the beginning of being sent home two people from two teams came to visit - one early intervention and the other the perinatal team which is really just one woman. I think they felt I would get better support from early intervention, of course they aren't specialised with PP but I had access to psychologist as and when I needed it etc. Invaluable for me I would say. Great they have referred you now, hope that's helpful.

[Kat_at_APP Volunteer]

Hi S&W it's a complex thing.. My first psychotic episode came on so quick after the birth, and went away with sleep and sedation. It was put down to sleep deprivation, and the effects of blood loss/infection, and nobody mentioned PP at that point. I was in a side room in the large postnatal ward, then on the main ward which was pretty hellish. My family just really wanted the two of us home, and managed to convince the ward sister that we should be discharged. I dont remember the perinatal psychiatric team even being invovled during the discharge but i think someone must have signed my notes. The only thing the doctors insisted on was a daily midwife visit (which were next to useless, one of them even suggested I should "take a lovely bath with the baby, to relax"...). The problem was my dad and sister are both doctors and were very persuasive that they could manage me at home. We only lasted 30-40 hours at home before back to A&E and transfer to MBU!

[Kat_at_APP Volunteer]

Hi again! I just reread your reply and realise I misread it the first time... You were asking about why I wasn't under care of psychologist/crisis team after my discharge from the MBU? I'm not sure why I never had that much support. I had a couple of visits from a perinatal CPN. She was nice, but was really just concerned to check whether I was sleeping and eating ok. I didn't question it at the time - was just so grateful for us to be home, and feeling better, and starting to enjoy family life.

Thanks and sorry for answering the wrong question at first! Kx

[andrea_at_app Volunteer APP in reply to Kat_at_APP]

Hi KatG, it's good to hear about your good treatment too & that your PP was recognised quickly & your perinatal psychiatric team were generally excellent. I wish it was like this in all areas. I think you're right that practitioners should err on side of caution when it comes to discharging a new mum & baby. Your midwife visit shows that training in PP would've been very helpful there - suggesting you 'take a lovely bath with the baby, to relax', oh dear!

[Ellie_at_APP Partner in reply to Kat_at_APP]

That does seem a bit crazy, it's just strange the different support people seem to get. There doesn't seem to be any consistency. It sounds like our PP experience was quite similar (e.g. MBU etc) but our support after MBU was quite different - i got offered so much. Maybe it was because you were quite well on being discharged? I was struggling with depression quite badly after going home, I do remember the MBU saying to me "you will be ok, you're with the early intervention team, you will get lots of support" and they were right...

[TrishaK]

My biggest problem was that the hospital doctors didn't think anything was wrong with me when I first was taken in. I could answer all the questions correctly, but they weren't asking the important ones and weren't getting me in my loop of obsessive thinking, finally another doctor was able to see that I had a postpartum psychosis. My husband was really frustrated because he had looked up my symptoms and even told them that I had PP but they didn't listen to him and continued to tell him they didn't know why they brought me in! I also felt completely isolated and alone as I was put in a small room with no windows and security guards, that got me even more into my psychosis thinking I had hurt my baby and I just didn't want to remember it and I eventually began to think I had killed him!! I believe that more understanding and better treatment of patients with these illnesses needs to be seen!

[Naomi_at_app Volunteer in reply to TrishaK]

Hi TrishaK

So sorry to hear of your awful experience in hospital. You raise a very important point which is that women with PP do not always appear to have lost 'insight' (e.g. as you say being able to ask questions) even though they are also having delusional and obsessive thoughts. In the early days before I was admitted to hospital my husband kept hoping I would be OK as I seemed to have periods where I would 'snap out' of the psychotic thoughts and be talking about normal sensible things like feeding the baby or what to have for dinner. As you say, hospital doctors (especially in emergency departments) need much more education about what to look for when women are beginning to experience PP and we are also finding in the UK that Crisis Teams (mental health teams who visit at home) need similar training too. At APP we campaign strongly for better awareness of PP for new mums and dads too so they can be aware of the signs.

Thanks for sharing your story.

Naomi x

[andrea_at_app Volunteer APP in reply to Naomi_at_app]

I had moments of lucidity too even in the midst of my episode. I can clearly remember fighting to slow my brain down & stop it from racing manically - of course I couldn't & these moments were fleeting but from the outside I probably looked like the normal me for a while.

[Ellie_at_APP Partner in reply to andrea_at_app]

Yes, I remember doing that too...in the ambulance from A&E to MBU (about a 1 1/2 hour drive) I remember just sitting there trying to concentrate on not letting my mind go and I managed to keep it together...

[andrea_at_app Volunteer APP]

Thanks for all the comments above, please keep them coming! Here's a list of the barriers for me - I know this sounds like a negative list but I was lucky that the care in my area was generally pretty good.

- Not knowing PP even existed or what the early symptoms were delayed us seeking help. We didn't know what was ‘normal’ postnatal behaviour (was our 1st baby) so alarm bells didn't ring even with obvious manic symptoms.

- Not knowing or having anywhere to turn for help: Day 4 at home in crisis, my husband called our midwife to get help but it was the weekend & she wasn't available. He then called our maternity hospital but as I’d been discharged he was told to call our GP when they opened in 2 days time! We ended up in A&E a few hours later.

- Not having a specialist perinatal psychiatrist available. I was misdiagnosed initially by the 1st psychiatrist on day 5 after birth (but luckily medicated). I was seen on day 6 by a different psychiatric consultant who diagnosed PP (he was a specialist in psychosis but not PP).

- Not having specialist perinatal mental health midwife available who understood PP & my needs, mentally, physically along with all the new mothering/parenting needs - it would've made a huge difference! The midwives on the ward told me I had PND which did nothing but increase my paranoia because I knew I wasn't depressed in the slightest!

- Not having anyone in my crisis team or early intervention team with knowledge & experience of PP. They were really great but I was desperate for information that they couldn't provide & at times I felt like just an ‘interesting case’. Also it would've helped normalise PP a bit if someone looking after me had come across it before & it would've given me some hope proving that you can get better etc. They had experience of other psychosis but didn't understand other issues specific to postnatal episodes.

- Not having a Community Psychiatric Nurse (CPN) or Health Visitor trained in PP. These were the people who I had a lot of contact with over the two years of my recovery. If they understood PP & the issues surrounding it they could've helped me a great deal in rebuilding myself, getting my confidence back & helping my family come back together again. I remember my Health Visitor telling me that PP can affect the development of babies – (not helpful at all & really added to the guilt for a long time after!)

- Having a GP that only vaguely understood PP. After the 1st few months I saw my GP once a month just for my medication - I was still under the Early Intervention team, I hardly ever saw the same GP & it was a quick, cursory appt. ask, ‘how are you?’, ‘anything changed?’ ‘here’s your prescription’ …nothing more than that.

[Ellie_at_APP Partner in reply to andrea_at_app]

Hi Andrea,

Your experience was interesting. Perhaps I was being over optimistic when I wrote my first post in reply to this thread! It is true that we didn't have a clue what the symptoms of PP were and this would have helped - education of prospective parents is really important. I did see a midwife for support with breastfeeding the day I really lost it - I was tearful, and I also talked about how God told me everything would be OK... I remember her hugging me saying to my partner "this is normal for the day the milk comes in"... perhaps it was but maybe if she had been more aware/educated in PP she might have thought something was up. A few hours later we were in A&E.

I guess I was lucky in that I was diagnosed correctly in A&E, not sure what type of psychiatrist it was who did the assessment but my partner was told what it was within a few hours, I don't remember anything.

I am thinking of the support I got from Early Intervention, I didn't get the impression that they didn't know much about PP though they didn't tell me much about it... they were very supportive re confidence with parenting, saying it was normal etc. I didn't have much contact with HV's actually, I guess they knew I was being looked after by the mental health team.

It is awful though, it seems like a complete postcode lottery the sort of support someone gets.

[andrea_at_app Volunteer APP in reply to Ellie_at_APP]

Yes, sadly it is a real postcode lottery at the moment. I wish that ALL families had access to the good bits in the care that you & KatG mention & that there's an end to needless tragedies. I also wish that everyone in contact with women during pregnancy & the postnatal year knew that they have an opportunity to improve the lives of women & families affected by perinatal mental illness in some way - seemingly small things can mean SO much when you're really struggling on the inside. It will happen...one day.

[Ellie_at_APP Partner in reply to andrea_at_app]

Yeah totally - that's why I'm really going to try and spread the word with mental health / midwives etc...its just hard finding the time. And I agree Health Visitors and anyone who comes into contact can mean so much - one conversation saying just the right thing, or even just a gesture, could sometimes change my mindset and set me back on the road to recovery...

[guinea1]

Being sent to a psychiatric hospital, wanted baby to follow, but noway would anyone in their right mind would let a 11 day old baby go to a place where angry patients ripping of doors were, plus wanting to have me lock myself in a room with baby, where I could even care for myself. One in the hospital refused to let me out even though I was getting much worse being there, as staff didn't understand what I needed and did suffer neglect to my needs, husband managed to get me out after a month only because I had a day home and he refused to take me back saying it wasn't doing me any good there........having to wait 2 months for MBU