APP discuss Perinatal Mental Health services at the Welsh Assembly

19800629_1547921858614816_2427648579280450680_oAPP were invited to the Welsh Assembly this week to give evidence to the Children, Young People & Education Committee about Perinatal Mental Healthcare in Wales.

APP’s Director, Dr Jess Heron and North Wales Regional Rep, Sally Wilson attended for APP and Charlotte Harding (who is also APP’s S Wales Rep) attended with Barbara Cunningham on behalf of PMH Cymru.

The aim of the inquiry is to consider how Perinatal Mental Health services are currently provided and how the Welsh Government can improve services for mothers, babies, fathers and families. The Committee wanted to find out how services link together, including specialised perinatal mental health services, maternity services, general adult mental health services, inpatient mother and baby units, parent and infant mental health services, health visiting, clinical psychology, and midwifery services, GPs and the extended primary care team, role of the third sector and local support groups, and private providers of services.

Jess and Sally explained the critical need for a Mother & Baby Unit in Wales. They gave evidence about the importance of high quality training in PP for all health and social care professionals that come into contact with pregnant and postnatal women. They explained to the committee the importance of peer support to women and families affected by PP, and outlined how this could be provided in Wales.

You can read APP’s Wales report here and watch via Senedd TV here (around 2 hours in).

APP Train New Peer Support Volunteers

19243321_1525222677551401_2333541685529317762_oIn June we were able to train 8 new Peer Support Volunteers. It is amazing to have the new volunteers up and running to ensure our Peer Support Service can continue meeting demand from mums and families affected by PP, both on the PPTalk forum, and in 1:1 messaging.

It was a wonderful day and really special to be together as women who have had PP and share our experiences. Three of our newly trained Peer Support Volunteers told us how they felt about the training day. 

Kat: Since the training, I’ve felt empowered and supported to provide responses on the online help forum, and to take on my very first “one to one” email support case. It’s not always easy. Sometimes peoples’ problems seem more complex than *just* PP. And of course everyone’s experience differs wildly. But there is always a way to empathise and reach out to others through our shared experience. And it is incredibly worthwhile and satisfying work. I’m really grateful for the opportunity to support others through this illness. When I was dreadfully ill myself my husband found the APP forum and received amazing support through it: practical, empathic, specialised and ongoing for many months. And now I can start doing the same for others - as a family, we have come “full circle”!

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Claire: It was really amazing to meet and spend a whole day training alongside other women who have suffered Postpartum Psychosis and to join an online community of peer supporters who are rallying together to transform their individual traumatic experiences into something positive for other people. I feel confident after the training that I know how to look after myself whilst being able to provide some lived experience advice and support to those who ask for it. I feel very honoured to have been given this training and I hope to provide the kind of help I needed at my worst point of the illness.

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Sabine: The reasons for my motivation in taking part in the ‘Peer Support Training’ I guess are multi-layered, unique and personal, - in a way signifying a milestone of where I have been and where I am today. 

I definitively wanted to feel more reassured and cushioned when responding to mums and family members on the forum. When joining the APP forum I did not feel on my own anymore; the numbness inside me had vanished, - the lid was opened and I was able to talk to compassionate and kind ladies on the forum.

Now there is a ‘SENSE OF BELONGING’, since meeting those very special women, not only the ones who organised the workshop, but the 7 other newcomers, who wanted to become volunteers. I feel happy, because my story is out there and shared by other females. I feel as if I have a voice. I have been able to tackle London and met some wonderful women, who were strangers to me.

I would like to thank APP and everybody involved for the location and choice of venue, the participation and contribution of workshop members, ‘the individual and special support’ before and during the event, enabling and creating a positive and relaxed atmosphere, but especially the superbly organised and very professionally-led workshop by Jess, Clare, Hannah, Ellie & Amy.

Our Peer Support Service is kindly supported by Comic Relief, The Allen Lane Foundation and the generosity of individual donors and fundraisers. 

PPIMHS Team Complete the Great Newham Run!

NehaA very big thank you to Dr Neha Rawat and colleagues and family of PPIMHS (Perinatal Parent Infant Mental Health Service) at NELFT (North East London NHS Foundation Trust) who completed the 10k Great Newham London run which took place on Sunday 2nd July.

They said 'We all thoroughly enjoyed ourselves and am glad to report that we are still fundraising!'

They certainly look very happy on completing their run, a big congratulations and thank you from everyone at APP!

Please do continue to support their fundraising efforts; you can still donate via their Virgin Money Giving page here.

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Section of Women's Mental Health, KCL, Support APP

jill domoneyThree cheers for Jill Domoney, one of APP's two runners in the Royal Parks Foundation Half Marathon

The race takes in the capital's world-famous landmarks on closed roads, and four of London's eight Royal Parks - Hyde Park, The Green Park, St James's Park and Kensington Gardens. As it takes place on 8th October the runners should enjoy glorious shades of autumn through the beautifully kept parks. 

Jill may be the one in training but wonderfully, the whole Section of Women's Mental Health at Kings College London are getting behind her. Expect a cake sale, rattling of collection boxes and general drumming up of support for Jill's athletic effort.

Make a donation to Jill's fundraising page here

We are very grateful to Jill and her colleagues for recognising the value of APP's essential work with mums and families affected by Postpartum Psychosis and all their efforts to fundraise for us. 

Holly's Amazing Marathon Challenge

hollymarathonfinish Congratulations to Holly Haywood who ran the Exeter marathon on 21st May to raise money for APP. She says:

It was a very hot day, but the course was picturesque which helped. I got a personal best of 5 hours 39 mins. All recovered now and looking into booking my next one.

Running one marathon is a huge endeavour but Holly is running 12!  Here's why: 

My sister suffered with this after my nephew Leo was born and it changed our family. We had never heard of the condition before and not realised that Beth was unwell until she was not able to cope with everyday life.

We spent the first few days looking after Leo and supporting Beth, before she was admitted to the Mother and baby unit in Bornemouth where her condition gradually improved and she was allowed home.

It's only now, nearly 3 years down the line that I don't constantly worry about Beth. She is a tough cookie and will survive anything.

Please donate to help APP do their amazing work supporting families like mine.

So, that's three down, nine marathons to go!  Holly would definitely appreciate your support and donations to get here there. 

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Partnership with Institute of Health Visiting

Image uploaded from iOS (1)APP’s Expert by Experience sessions continue to be sought after and our partnership with Institute of Health Visiting (iHV) saw 4 further sessions after the successful pilot in Hull earlier in the year.

During Maternal Mental Health Awareness week, the Institute announced the collaboration, which aims to ensure that the APP voice is central to their training: 

“Women, who are experts by experience from APP, deliver on the iHV Perinatal Mental Health (PMH) programmes so all the health and social care professionals we train understand what they need to do to best support women and their families”. 

Read the full statement here.  

Music 4 Mums Round up

m4mumsOur very first Music 4 Mums fundraising initiative on World Maternal Mental Health Day has raised over £5,000 so far.

We are very grateful to all who staged an event, including Benedicte Waaler (top left), Tutbury Community Choir (bottom right), York Light Orchestra (top right), Ripon Community Orchestra (bottom left), Bradford Midwives, Fishergate Primary School and Burgess Hill School. You can find out more about the events on our Fundraising News page

We are also very grateful to our team and volunteers who worked so hard to promote and support the initiative, shout out to Hannah, Ellie, Kat, Emma, Heather and many others. 

Maternal Mental Health Awareness Week, promoted by the PMH Partnership and featuring the hashtag #MaternalMHMatters, created a lot of interest on social media during the first week of May, closely followed by Mental Health Awareness Week after this. #MHAW2017 featured heavily on Twitter and it was great to see more conversations about mental health and PP.

Media activity in this time was also high, including a Radio 4 interview with Hannah B about her PP experience and a Daily Mail feature on Hannah F; go to our media page for the latest news, including International Day of the Midwife which also fell in early May and was supported by midwives in Bradford. 

Peer Support & Regional Reps Co-ordinator Hannah also attended an IDM2017 event in Darlington, hosted by the Co Durham & Darlington Trust.  Amongst speakers including Baroness Cumberlege, who mentioned the need for improved perinatal mental health care as part of the Better Births review, and national and regional figures from Royal College of Midwives and others, Hannah shared her experience of PP and the changes in the PMH landscape in recent years.  She also managed to give APP Guides to the Baroness! 

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Carroll's story: "My mum had PP after having me, it was very much brushed under the carpet and I don't want to do that".

Carroll experienced postpartum psychosis in 2003 after the birth of her second son. Some of her story contains mention of her thoughts when she was acutely ill that some readers may find upsetting, especially as this was towards her baby. If you are not feeling 100%, please be aware that Carroll's story may not be for you at this time. There are other accounts of Postpartum Psychosis on this page which could be more helpful for you if you are looking for stories about the illness. Carroll has fully recovered and now volunteers with APP as a Regional Rep; she only found the charity recently and wishes that she could have shared her experiences sooner. She runs her own business in North Yorkshire and has a great relationship with her now teenage sons.

 

Carroll's story 'My Postpartum Psychosis journey'

My youngest son was born at the beginning of December 2003. My previous
pregnancy in 1997 had resulted in Post Natal Depression, so I had a high chance that
after this birth I would probably again suffer from PND. I had no idea what would
unfold after giving birth again. This is my journey. I can't remember all of the facts;
some I have had recounted to me.

Brief pregnancy and delivery info: the baby was lying back to back, but walking
around the maternity ward and crawling on all fours was having no effect on him
wanting to turn. I wasn't allowed an epidural as the midwives wanted to keep me
moving. The end result was that he was manually turned inside me and my waters
broken, after which I had a normal delivery.

What I now know and should've flagged up but was too frightened, was that I was
having intrusive thoughts from 8 months of pregnancy onwards about wanting my
baby to die inside me. It felt evil. Since reading and researching this I have learned
that it is perfectly possible to have antenatal psychosis too, although I have no official
diagnosis of this as I did not dare go to the GP about it at the time. I believe my
journey started here...

The intrusive thoughts during pregnancy came daily and alarmed me to the point of
anxiety spikes: these continued until I gave birth. I used to placate myself by
believing that these thoughts would disappear once I'd had the baby, but unfortunately
this was not to be.

After having my baby I had 24 hours in hospital and I could already feel my anxiety
levels starting to creep up, but brushed it off as normal, thinking I have a new baby
it's an anxious time.

My eldest son and husband came to collect me and the baby, and we went home.
Although I felt anxious, I could cope: my husband had 2 weeks paternity leave, the
eldest son was at school, so plenty of time to concentrate on baby, and Christmas
shopping had been done in advance! The problem I was having was that if the baby
was quiet and asleep all was well, but I started going into a spin if he moved, and
mostly definitely if he cried, but this was easy to cover up while my husband was at
home and I made excuses so that he had to deal with the baby.

My life started to spiral out of control when my husband went back to work, I hadn't
slept properly since the birth, we were doing alternate night feeds (the baby was
bottle fed) and these were the most traumatic hours for me, intrusive thoughts and a
voice (it was my voice, but it felt like it was coming from an external source) telling
me to bang my baby’s head against a wall, put bleach in his feed or drown him, was
what plagued me every time I had to deal with him, but through the night these
thoughts just seemed so intense, my heart raced, I had mild panic attacks, sleep didn't
happen, but I couldn’t tell anybody as I felt I'd failed again at raising a child, and this
definitely felt more than PND.

I managed to struggle through a few days before it got to the point that I wouldn't let
my husband go to work unless someone came round and sat with the baby, or he
would have to take time off. Time off wasn't an option and to be fair, he didn't know
the full scale of what was going on in my head, I didn't talk about it, I just said I
needed more sleep.

My mother in law came round and helped for several days; I’m not quite sure on the
timescale.

I did go to the GP (I didn't tell him everything, my fear was that I would get taken
away and baby taken off me, ironic when I didn't actually want anything to do with
him). I was prescribed 20mg Fluoxetine (Prozac), a drug not unfamiliar to me as I'd
been prescribed it in my teens, and 30mg Temazepam to help me sleep. I just wanted
to be a normal mother who could love, care and interact with her baby. It did happen
eventually after medical intervention.

That night my husband took over all the night feeds at my request, whilst I shuffled
myself off to the spare room and had a fabulous night’s sleep. Life the next day
seemed great and I could enjoy my baby a little more, but that didn't last, in fact after
that one night, things really started to spiral..

My nights were now taken over not by sleep but by a voice, and thoughts on how I
was going to kill my family and myself: the voice was planning while I was sitting in
the corner of the room crying quietly in the dark, feeling very isolated and that I had
nowhere to turn, I just daren't speak of the things that were going through my head, I
was extremely frightened, and this was now happening night after night. I can't
actually remember having much to do with the baby as I was too consumed with the
thoughts and voice in my head. I obviously must have done, but I can't recall the care
I gave him.

Christmas came and went in a blur, as did my eldest son’s birthday party (also a
December child). I was really hitting rock bottom. My eldest at this point went to live
with my dad, as he has special educational needs and this situation with me was
doing him no good at all.

My husband was now sensing that his wife was a shell of her normal self and rang the
GP to say that he was gravely concerned and he needed to see me, I do remember
they stopped appointments to get me seen straight away. Medication was upped to
40mg Fluoxetine and 60mg Temazepam, I still remember the GP's exact words:
'Double everything'. 60mg Temazepam had no effect on me whatsoever: I was now
manic, irritable, lost in my own world, so what was reality? I had got to the point that
if the baby cried I wanted to run away as fast as I could, I didn't want to have
anything to do with him, my head was telling me he was evil and should be harmed.
Distance was the best way to deal with this I thought, but it all came to a head on 4th
January 2004.

My husband was poorly in bed, I was already up and pacing the floor waiting for the
baby to cry for his feed. I was dreading it, the intrusive thoughts were truly awful and
the voice was becoming louder telling me to harm the baby, he was evil and needed
to go. Baby did start to cry, I panicked, and went and got him out of his Moses
basket. I felt nothing for him, I just wanted to escape out of the door and run, run and
run. I did feed him, I didn't look at him, I couldn't, he was evil, he needed to go.

According to my husband, I wrapped baby in several thick blankets, put the gas fire
on high and placed him in front of it and left him. I sat on the stairs, not even noticing
that baby was screaming the house down; I was just staring at the stair carpet.

The screaming woke my husband, I can't actually remember some of the events that
followed after he found baby apart from I know he had to put him in the bath. I
collapsed in floods of tears at the top of the stairs.

My dad came round, my eldest son stayed with his neighbour while he helped with
me, and the next thing I knew I was in A and E at Harrogate District Hospital waiting
to see the on call psychiatrist. I do recall that the psych said she had just finished
rotation at Bootham Park Hospital in York, under Dr Shaw, who was the consultant in
charge of the mother and baby unit there, and I agreed to a voluntary section. That is
where I headed next, not straight to the unit, I had to be stabilised first on the
admission ward and then moved to the ward attached to the mother and baby unit.

Walking into Bootham frightened me to death, a fear of the unknown, but I knew
deep down that this was where I needed to be. I couldn't eat on arrival, my anxiety
and panic was too heightened.

I hated it when my dad had to leave, I felt so alone in a very unfamiliar place, the
nurses were amazing though, and helped me to settle as much as possible.

I was called into a room. Dr Shaw had arrived to see me: she was an imposing
woman to me, but over the weeks in Bootham I could see her goal was to get her
patients well enough to function, bonding with their babies and ultimately discharged.
I recounted events I had experienced over the last month, and she was amazed that
60mg Temazepam had had absolutely no effect on me. My medication was once
again changed to Diazepam for my anxiety and at night Zopiclone to aid sleep.
Diazepam didn't have any positive effect on me; the only effect I had was a fat
tongue, which made speech difficult. I did sleep very, very restlessly, and apparently
it looked like I was fighting with someone.

Phone calls home were difficult: if I could hear baby present or crying during the call,
I had to put the receiver down. He was still not part of me and I couldn't bear to hear
him.

I was moved to the ward attached to the mother and baby unit for further
stabilisation, and this was where I was administered Olanzapine (an amazing drug for
me, it did make me incredibly sleepy though, and some days I just felt like I was
crawling through the hours, it also made me pile on weight, but rather that than not
feeling any better). I was adamant I didn't want Electro-Convulsive Therapy: my
mother had this after having me and it had left with her very little memory. I know
ECT had improved by the time I was admitted, but I couldn’t get the thought of my
mum out of my head. My dad had also expressed that it should be the very, very last
resort.

This ward could be very volatile at times. If a violent issue arose with a patient, I
found it very distressing, so I used to just stay in my room until it had passed. I
engaged in the yoga classes but couldn't motivate myself for much else. After a week
I had stabilised enough for my baby to join me, but I was petrified.

Baby arrived and although I was far from well, there were glimmers of feelings for
him. During the day I was allowed on the mother and baby unit under constant
supervision, even down to being supervised preparing feeds to go in the fridge.
My son had a room on the mother and baby unit sharing with another baby whose
mum was already sleeping in the 2-bed unit. At night I had to go back onto the main
ward to sleep until Dr Shaw thought I was well enough to sleep on the unit in close
proximity to my baby.

My sleep did return and I only had the very occasional Zopiclone, but during the day
I was still showing signs of mania and anxiety, so it was decided to change my
antidepressant from 40mg Fluoxetine to 75mg Venlafaxine. This had better anti
anxiolytic properties, and the highest dose I was put on over the weeks - and stayed
on for a few years - was 300mg a day. This drug made a whole world of difference to
me.

Social services came to visit me one day, standard procedure apparently, but I was
convinced they were going to take baby off me, and this resulted in me becoming a
bit manic through anxiety. However, it was merely an assessment of risk, which I can
see now has to be done.

Life on the unit wasn't that bad really, now my mood was lifting. Yes, I had to be
supervised as I still had thoughts of wanting to hit the baby’s head against the sink or
wall, but wanting to poison his feeds had diminished and drowning thoughts were
less and less. I got on really well with the other lady on the unit, who was close to
discharge.

I think I stayed on the main ward for a further 2 weeks, and by this time baby had
started sleeping through the night (how lucky was I?) before being given permission
to move onto the unit and share a bedroom with the lady already there. I think the
night staff were pleased the baby had started sleeping through as he'd already widdled
on 3 nurses during night-time nappy changes they used to come and tell me in the
morning what the baby had done, those night staff were a very jovial bunch. Baby
was also diagnosed with reflux while in Bootham, as he vomited twice down the
nurse in charge, once down her sleeve, the second time down the neck of her
clothing, among other projectile vomiting episodes, so he was making a name for
himself. Infant Gaviscon in his feeds sorted this out, though.

I was improving day by day; some days were better than others, although still very
sleepy from Olanzapine. I still had days where the staff had to care for the baby, as I
just couldn't do anything but these were slowly decreasing. A breakthrough came,
although I didn't think anything of it at the time, when I started popping my head
around the nursery door at bedtime and saying, 'Night, night, sweet dreams'.

I was eventually allowed out with him under supervision, and even though it was the
end of January I remember it being sunny. It felt good to be out in the fresh air, and
this lifted my spirits as I'm an outdoor person.

At night after the babies had gone to bed the other mum and I used to have our own
little spa nights, obviously we had to ask for tweezers, razors etc, as on a mental
health unit, sharp items get taken away. But just massaging each other’s feet, head
and hands made us feel very relaxed., We also had our night time nibbles, you have to
look after your own wellbeing too!

My husband visited often, my dad used to come with my eldest son at the weekend,
staff looked after the baby so I could do stuff with the eldest, as we still needed time
together too. It did take its toll on my eldest, but the one to one he was having with
my dad kept him fairly upbeat.

The time came for me to have a home visit along with the baby, now this was scary,
with only my husband for support and to be quite frank, although I could now care
for the baby, the sleepiness from the meds could be very draining, and I could sleep
like a teenager. Some intrusive thoughts hadn't completely gone either. It was just an
overnight visit.

My husband had changed the décor, in his eyes this would help greatly, not to sound
ungrateful but it didn't, it was still the same house. I remember I was fairly settled
until about 5pm, then I had overpowering thoughts again, I had to be taken back to
the unit, I felt that I would never get well enough to be allowed back home.

Back on the unit, the staff were so understanding. I felt a failure but relieved to be
back. Looking back it was just a blip and I did have several successful home visits
after this.

Even though I was so tired from the meds I was starting to improve greatly, I was
wanting the radio on and singing along to songs, dancing in the unit lounge with the
baby: music was my therapy and still is. The nurses were also a humorous bunch, I
remember singing Underneath the Arches and doing the dance by Flanagan and Allen
Twelve weeks after admission I was discharged into the care of Harrogate District
Psychiatric team along with a Community Psychiatric Nurse, a lovely lady who
visited me every day for the first few weeks. I still had good and bad days, but I could
care for, love and interact with my baby, we got into a routine, me sleeping when he
slept, only way I could get through the day. My husband nicknamed me Kevin the
Teenager as when he was at home I just slept.

Sadly, my CPN left on maternity leave and was never replaced, This was 3 months
after discharge, although I did see the psychiatrist once a month. I started to spiral
again and ended up under the care of the Harrogate and District crisis team, who
visited me three times a day to make sure I was taking my medication and to see how
I was coping. My medication was upped and things stabilised, although more
Olanzapine meant more sleeping, but I could get myself through the day fairly
comfortably, although in a medication haze.

My eldest son came back home to live with us, he was only six so he was aware mum
wasn't well but couldn't fully understand, routine helped us get through the days.
I spiralled twice after discharge, both times ending up in the care of the crisis team,
but I rallied round again after more medication tweaks. Unfortunately, the second
time led to me self harming, not to kill myself, but just to relieve the intense
emotional pressure I was feeling, though this did ease after a few sessions of CAT
(cognitive analytical therapy). I felt like I'd been run over by a steamroller after these
appointments, but they did help me unpick learned behaviours.

I would say to get back to feeling a bit like my old self and not having to rely so
heavily on drugs, took about 4 years. I can't fully recall how long I was taking
Olanzapine, I know it wasn't 4 years, to hazard a guess I would say I took it for
approximately 18 months.

I am still on antidepressants and will be for the rest of my life, but this is due to other
factors and not because of any effects of PP.

I will be forever grateful to Bootham Park Mother and Baby unit (now sadly closed
down), Olanzapine (yes it makes you sleep and gain weight, but my goodness it was a
fabulous anti-psychotic drug for me), Venlafaxine (worked wonders on my anxiety),
and the help and support of mental health professionals, family and friends.

My marriage ran its course and we separated in 2008. This was a new chapter for me,
single life with my 2 boys. My eldest son is coming up to 20 and making his own
way in the world and my baby is now 13 and sleeps like he is on Olanzapine himself!
We have a truly fabulous mother and son relationship.

I think it's important not to keep major life events hidden, my youngest son knows for
the first few months of his life he was raised in a mother and baby unit, I have photos
of our time there. I also explained PP to him a few months ago after he expressed an
interest.

My mum had PP after having me, it was very much brushed under the carpet and I
don't want to do that. This illness needs a voice and I for one am happy to talk about
my PP journey to raise awareness.

PPIMHS Team Tackle 10k Great Newham Run!

DRRawatDr Neha Rawat. colleagues and family of PPIMHS (Perinatal Parent Infant Mental Health Service) at NELFT (North East London NHS Foundation Trust) are running the 10k Great Newham London run on Sunday 2 July in aid of APP.

All runners in the 10k will get the chance to have their very own Olympic moment as they finish inside the Stadium and cross the famous finish line and running track! They say:

"We are a community perinatal mental health service and our running team is composed of doctors, therapists, nurses, social workers, admin, sons and daughters... 

We have seen and experienced closely how damaging postpartum psychosis can be for mothers and families and what it means to have timely help and intervention.

The support that charities like Action on Postpartum Psychosis  (APP) provide, in addition to professional intervention from services like ours, to families goes a long way in helping families manage this very difficult time and experience.

We are running in support of Action on Postpartum Psychosis - a charity that's close to our hearts and that has been working tirelessly with professionals and families to improve lives of families affected by postnatal psychosis. This is our way of saying thank you to the tireless work that APP does and has been doing with mums and families."

A very big THANK YOU to all fourteen team members running this event! Please support them and donate via their Virgin Money Giving page here .