Rachel's story: "With the help and support of APP... I survived the battle and PP lost...twice".

Rachel experienced Postpartum Psychosis twice, in 2000 & 2011, after the birth of both her children. Some of her story contains mention of her thoughts when she was acutely ill that some readers may find upsetting, especially as these included about her baby. If you are not feeling 100%, please be aware that Rachel’s story may not be for you at this time. There are other accounts of Postpartum Psychosis in the Our Stories section which could be more helpful for you if you are looking for stories about the illness. Rachel has fully recovered and now volunteers with APP as a Regional Rep. She runs a hostel for the homeless in West Cumbria and has a great relationship with her children.

"This is my story of my experience of Postpartum Psychosis (PP) following the birth of my children.

So! like a lot of women out there, I got pregnant! And was thoroughly miserable. I was physically ill throughout the whole time. Never did I imagine that I would be probed, injected, examined and scrutinised on such a level that I wondered who my body actually belonged to.

The staff were always fantastic and lovely but it wasn't something I enjoyed. Not one bit! At 6 months pregnant when I threw up all over myself in a taxi and fainted I found myself at the maternity unit “threatening labour”. I was stabbed in each leg with steroid injections, strapped to a machine to monitor baby and after several attempts of taking a blood sample, they succeeded! They then...pricked my finger and to top it all off…inserted a pessary...

Labour managed to subside and I went home. I had pelvic arthropathy (where the tendons in my pelvis were strained) low blood pressure, Group Strep B...yet I digress. I was encouraged to attend the antenatal class but the problem with low blood pressure is you can't stand up for long before you pass out. So when I arrived a noticed a long queue of pregnant women...I joined the queue and eventually we slowly walked into the room but it was too late for me, I fainted and wet myself...!

Self respect, body and mind in shreds, my baby refused to turn. I could barely breath as he was stuck firmly under my ribs. Luckily my consultant had a great idea. He would turn him himself...! How would he do this you may ask? I’ll tell you. He put both his hands on my stomach, and wrenched him round. The pain was just unbearable. I went home and I just thought I can't go on. I sobbed and sobbed, my partner tried to phone my midwife for help but the Doctors Surgery were closed.

I opened my eyes. The LED light displayed 5.58am. At 6.00am there was a loud bang, like a gun shot, I thought I had been shot. I then realised my waters had broke. My partner rushed to the phone to call the hospital as I doubled over screaming with agony. They wanted to speak to me but the phone was attached to the wall downstairs...!! I crawled down the stairs.

"Help me!" I begged.
"Listen to me Rachel, you need to put the kettle on and have a cup of tea." I couldn’t quite believe what I was hearing!! Had he called the wrong number???

Soon my parents arrived and drove me screaming and crying up to the hospital. I saw the light inside the hospital but when we got to the door...it was locked!!! We knocked and rang the bell. Eventually the door opened but the lift was broken. Pain searing through me with god only knows what running down my leg, we got to the ward and I got on to a bed.

I can’t tell you what happened for the next 2 hours and 28 minutes as it's rated 18 as it literally scarred me for life... I gave birth "naturally". I felt like I was lying in a torture chamber screaming and begging for someone (anyone) to help me.

My son was born, it was finally all over...the midwife walked over to me, pulled out my breast and began squeezing it with all her might with what can only be described as a blue / green / blood covered "thing" in her arms. He was placed in an incubator, he was 3 weeks early and blue and cold. Alarms sounded, the baby, staff and family rushed out and I was left. Like a slaughtered animal on a bed covered in my own bodily fluids. I didn’t care. I lay still in the silence.

"Rachel, its time to come and see your son". I knew he had died. He was in the morgue. I couldn’t lie there with my son in the morgue, alone. I got off the bed as the blood ran from me onto the floor. "That’s perfectly normal" the lady said. I think I had a bath, then I was in a wheelchair going to see my dead son.

She wheeled me into the SCBU and I asked, "where are we going?"
"We are going to see your son" she replied.
"He's alive?" I said.
"Of course he is!" she said.

And there he was; battered bruised, wires and tubes coming out of him...but alive.

I was put in a dark side room on my own with no clock or anyway of knowing what time or day it was. I was scared, I could hear the repeated screams of terror coming from my mouth but they were in my head. Every 5 minutes there was a knock.

"It's time for his feed". I had stitches inside and out where I had torn. Seven in total, walking back and forth to SCBU I just thought...you have to do this. He needs you. I sat next to him and prayed "God, if you let him live I will go to church every week, please just move him into the big boys cot." He had jaundice, 6 Lb 10 but was loosing weight.

The next morning he was in a big boys cot. As an atheist I was quite surprised that God had intervened.

Eventually we went home. I felt dead inside. At home the patterns on the curtains swirled as did the carpets. I couldn’t look at it too long it made me feel sick. There was a large dark shadow figure who stood in the corner of my bedroom, could it be the grim reaper... Night times were worst. Vivid nightmares which I couldn’t work out if I was awake or asleep. My son was decapitated, his limbs had been pulled off. Then I would look and he had his head, but I’d look closer and he had no eye balls, he had large pointed teeth like a wild animal. We were in the depths of hell.

I had to breast feed him with no eyes, just large black eye sockets. I would hear voices through the baby monitors. They were coming for me...they were watching and they knew... Knew what? I don’t know.

Darkness continued and people would come and go. I learned to hide it really well. My CPN at a later date said it was impossible to tell, we were always "well presented".

I begged my partner not to leave me alone. Sleep wasn’t an option, the screams of torture, the sight of my son with ripped off limbs. I could see germs, I went through hundreds of packets of anti bacterial wipes, I was convinced visitors were trying to spread germs to kill me and my son.

I was advised to get a "routine". This comprised of me getting ready and putting baby in the pram, walking to town, and trying to beat the notion to push the pram in front of the oncoming traffic. I would stand at the harbour knowing the water was warm and soothing and my son wanted to be in there with the peace and safety where he belonged. Then I would jolt out of it and walk back, trying to keep away from the main roads and traffic but then I would have to walk through the woods where dark shadows chased us hunting us down. Every now and then I would have a realisation of what I had done. I was capable of harm. I was the evil one.

A very clever sure start visitor recognised something was wrong. She got me to the doctors. I told them I couldn’t sleep or stop crying, but I couldn’t tell them the real truth... I had to protect the dark evil hell we were experiencing. They would lock me up and take away the baby...they would know our secret. So, they put me on anti-depressants. This made things a lot worse. Another encounter where the trees were trying to strangle me and the lamp posts were all on fire as we descended into hell, saw me taken to the local hospital for an assessment. I was placed on anti psychotic medication.

I had been suffering from Postpartum Psychosis. For four very long months.

So the hallucinations stopped and the reality of what I had been thinking hit me. One night when my friend was staying over, I put together all of my medication and took the lot and got into bed for one final time. I woke up in a hospital bed with a tube of charcoal forced down my throat. The nurses looked at my with disgust. Depression hit, big time. I couldn’t feel love, happiness, anger or sadness. Just nothingness and emptiness. Another suicide attempt followed and it seemed apparent I wasn’t going to die. Which seemed unfortunate at the time. Yet, things started to improve.

At this point I contacted APP. They had a "pen friend" project where you can speak to other mums who had been through what I had. She was a life-line, I never got to meet her but I can honestly say she got me through some of the darkest days of my life.

It took around 2 & ½ years to recover from PP. But I never recovered from the birth. Many many years later I was diagnosed with PTSD. I attended CBT therapy and finally, 10 years after the birth I was finally free.

So my life moved on, I got into work, Dylan went to school and things were great! I met my husband and he asked the question..."should we have a baby?"

I honestly thought I couldn’t put myself through that again but once again I got in touch with APP to ask for their advice and they were amazing. They managed to arrange a consultation with a perinatal psychiatrist consultant and he diagnosed me with Cyclothymia, a type three bi-polar and explained that it was highly likely I would have PP again so I needed to go to my GP and ask for them to put a care plan in place. Without this essential advice things could have been very different.

I struggled with the pregnancy, but with a fantastic care plan, mental health team, wonderful husband, friends and family I got through it!!

Anti psychotic medication was ready to be administered at 38 weeks to prevent PP rearing its ugly head...so of course I went into labour at 35 weeks! However, a great birth experience. WCH Maternity team were faultless. My daughter was in special care for a week... And yes I developed PP again as the medication takes a few days to kick in and get the levels correct. I was wrapped in love and care by everyone. The result? I was back in work and off medication within 6 months.

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When I recovered APP invited me to a meeting where survivors from all over the country were joining together to look at new ways of working. I was unsure about going as PP is such an emotive subject for me, but I went and it felt so great to be part of a community of women who understand. APP were looking for Regional Reps across the UK to help women just like me in my community who were suffering from PP. I agreed and I have got to say it’s the most rewarding work. PP is very taboo, but unless women like me and the other reps take a stand and raise awareness, more will suffer in silence.

I survived PP...twice. There are many that don’t. Which is why the new Mother and Baby Unit opening in September 2018 in Chorley, will be vital for the women of Cumbria and Lancashire.

I didn’t know PP, my partner and family didn’t know PP either, and because of that, we nearly all lost so much...

But there is good news!! We can and will recover from PP with the right help!!

Action on Postpartum Psychosis are an organisation built up with women just like me and the resources they offer are vital in the support to survivors of PP and their families.

Postpartum Psychosis has made me a stronger, more resilient person. I am alive and I love my children now more than ever! With the help and support of APP... I survived the battle and PP lost...Twice."

The impact of Eastenders...

A new study 'Qualitative exploration of the effect of a television soap opera storyline on women with experience of Postpartum Psychosis' has just been published about the impact of EastEnders' award winning Postpartum Psychosis storyline on women with personal experience of PP, by medical student Lewis Roberts working with APP.

QualExplorationofTV_APPauthorsMar2018The research explored how the storyline and concomitant increase in public awareness of postpartum psychosis have been received by women who have recovered from the condition. Nine semi-structured, one-to-one interviews were conducted with women who had experienced postpartum psychosis. Thematic analysis consistent with Braun and Clarke's six-step approach was used to generate themes from the data.

The results showed that public exposure provided by the postpartum psychosis portrayal was deemed highly valuable, and its mixed reception encompassed potentially therapeutic benefits in addition to harms. The research highlights the complexity of using television drama for public education and may enable mental health organisations to better focus future practices of raising postpartum psychosis awareness.

You can read and download the full article here or access online here.

Bipolar and pregnancy: decisions, decisions, decisions…

APP trustee Clare Dolman reports on her PhD which some APP members kindly contributed to.

liz bumpIf you’re a woman with bipolar disorder and you’re contemplating having a child, there’s quite a lot to consider. We now know from research (often conducted with the help of Bipolar UK members) that about 50% of women with bipolar are likely to have some sort of episode during pregnancy or postnatally. But 20-25% of women with bipolar will suffer a postpartum psychosis (PP), which is a more severe episode which requires emergency treatment and usually a stay in hospital.

Though these statistics may seem alarming, it’s important to recognise that a) there’s a 75% chance you won’t have a PP and b) if you’re unlucky and do, PP usually responds very well to treatment and you can get back to being a great mum to your baby very soon. When I suffered a PP after the birth of my daughter, it was an advantage that I already had a diagnosis of bipolar because both I and my husband knew within days of the birth that I needed psychiatric help – whereas it often goes unrecognised for a long time in women without a diagnosis, thus giving the condition more time to get worse. I had to go to hospital for five weeks and stop breastfeeding so I could restart my lithium, but I never lost the bond with my daughter and, once home, quickly re-established a routine of caring for her.

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Hannah’s story: "If there’s one thing I’ve learnt, its that you CAN recover".

My experience of postpartum psychosis was completely out of the blue. When my eldest, Sebastian, was born in September 2009, I’d enjoyed a really normal pregnancy. I’d had no prior mental health problems and, because of that, I had no idea what was happening to me when things started to go wrong.

Unfortunately, after a relatively calm and happy pregnancy, I went through a really traumatic birth, where I was transferred to hospital by ambulance and had to have an emergency C-section.

Back at home, just days after Sebastian was born, I noticed that I wasn’t sleeping properly and felt really quite anxious. As a first time mum, I assumed this was normal and tried to ignore it. However, the anxieties became obsessional and I felt paranoid. The midwives were concerned and advised I see a doctor which I did, but I was told to ‘pull myself together.’ So, thinking this must all be normal, I went back home and tried to get on with being a mum.

A big problem for me in the early days was that I was struggling to breastfeed. This, I now know, is not unusual, but my response to it was. I became really quite fixated on it and obsessed over it. The midwives supported me through it and tried to help me with alternative feeding options, but then I started to obsess over Sebastian’s weight. I also became obsessed with folding his blankets in a very particular way and checking the temperature in each room over and over again.

The midwives were really supportive but the problem was, I never really saw the same person twice, so it probably took a bit longer for them to notice the progression of my symptoms. Still, they pressed for me to see another doctor and made the appointment for me.

This was when my illness started to become really apparent to everyone around me.

It’s hard for me to recall this period with any degree of clarity, but my husband said that when I had to get ready for the appointment, I flew into a panic and threw such random clothes on that I didn’t look anything like my usual self. I couldn’t speak, I couldn’t make eye contact with the GP and, because of my presentation, he referred me to a psychiatrist at a mental health unit.

However, I think I managed to pull the wool over the psychiatrist’s eyes a bit. I remember flashes of sitting in the waiting room and thinking that I needed to convince them all that this horrible dread I was feeling was nothing.

I was terrified that if they saw how unwell I really was, they’d take my baby away from me.

Perhaps due to my efforts, and the lack of awareness of postpartum psychosis at the time, I was wrongly diagnosed with postnatal depression. I didn’t recognise that diagnosis at all as I knew I couldn’t be depressed – my moods were anxious and erratic and manic. Additionally, although I never disclosed it to anyone as I was so scared at what was happening to me, I was beginning to hear whispers and see flashes out of the corner of my eye.

After being sent home from the mental health unit that day, however, crisis hit.

My husband recalls waking up in the middle of the night to find all the lights on. He got up and found me wandering around frantically, talking to myself.

He rang the crisis team but, when they knew the baby was OK, they just suggested he call back the next day. But I really wasn’t OK. It must have been so frightening for my husband too, to see me so out of control like that. He sought help from his dad and they both took me to hospital where I was immediately sectioned and hospitalised the following day.

Initially, I was put on a general mixed psychiatric ward without my baby. I completely unravelled at that point. I was running around screaming, throwing plates of food, not knowing if the baby I had given birth to was real or a figment of my imagination. I didn’t trust any of my own thoughts or feelings.

I became obsessed with things again – this time with alarms sounding, but the nurses would tell me there were no alarms going off so it was obviously a hallucination. My mind felt completely broken. I never wanted to hurt me, or my son, or indeed anyone else. But I thought everyone was trying to hurt us.  I didn’t know where my son was – I even wondered if he was dead and it was my fault.

After two weeks on that psychiatric ward I was referred to a hospital in York, a bit further away from home. I wasn’t reacting to my medication and was so high and manic. I still wasn’t sleeping and was barely eating or drinking. The fact that I wasn’t looking after my body and was throwing myself around also caused physical problems for me – particularly in respect of the C-section wound.

Eventually, I burnt out. But this wasn’t the end of the experience.

I was left almost catatonic, completely flat and like a shell of my former self. They changed my medication and I underwent ECT (Electroconvulsive Therapy) and I was transferred into a mother and baby unit. At least then I was able to spend time bonding with my baby and I had my own space - although I still had access to the main ward and TV room.

After all this, I was eventually given some leaflets about postpartum psychosis. This was around 28 days after my section. I began making steady progress and was no longer psychotic but I was still incredibly anxious. So we took things slowly and I had a day at home on Christmas Day, but other than that, we upped my leave incrementally until I was finally ready to move back home permanently in January 2010.

When I got home, I saw this amazing CPN (Community Psychiatric Nurse) who would visit me and one of things she did was take me out for coffee and cake. It made me feel normal – as if I was just a normal mum out with her baby and a friend. I had access to this support for three years and it really helped me transition back to normality.

I was finally discharged completely from mental health services in 2012. I’ve had no subsequent episodes, and my second baby came along with me experiencing no symptoms of psychosis. Of course, I was understandably anxious at times, but, after being referred to Professor Ian Jones by my GP I saw a psychiatrist locally at eight months pregnant.  Finally we were able to plan for that early postnatal period and I took anti-psychotics for a short time after the birth just to be safe.

Since the traumatic time when I was unwell and recovering from PP, which wasn’t just difficult for me, but also for my husband and family too, life has been good. Of course, things are never perfect and there are ups and downs, but I feel as though my mental health is back to where it was pre-2009. I just hope that mums today are able to find help more quickly than I did if they experience the symptoms of postpartum psychosis.

But if I’ve learnt anything, it’s that while this illness really can come out of the blue – it can be treated and you can recover.

 

An invaluable visit to Bluebell!

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With thanks to funding from Comic Relief, our Peer Support Coordinators, Ellie and Hannah, and Director, Jess, were able to travel to Bristol to meet with members of the Bluebell peer support team, to share ideas and hear about each other’s projects, both of which are funded by Comic Relief.

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Claire's poem: 9 years ago.

Read Claire’s powerful poem she wrote a couple of years ago about her experiences suffering with PP in 2006, after giving birth to her son.

9 years ago…

9 years ago, I was frightened, I was lost,
Having a baby had come at a cost,
A price so high, I almost wondered,
how deep down the depths I had plundered…

9 years ago, I couldn’t leave my home,
The thoughts in my mind had uncontrollably grown,
Panic suddenly gripped me by the throat,
I couldn’t breath, all alone, feeling remote.

9 years ago, I screamed in terror,
Running into the street, bare feet in error,
The journey to hospital went by in a blur,
My Partner stopped at the garage, a forced detour…

9 years ago, my mind had gone crazy,
I limped in the hospital, reality hazy,
Surely I’d only just broken my hip,
I couldn’t remember? did I fall? did I slip?

9 years ago, I was admitted to a psychiatric ward,
Not a Mother and Baby unit, like some reward,
Men and women, all out of their minds,
I thought they wanted to poison or rape me, it takes all kinds.

9 years ago, I lay on the floor,
Screaming like a toddler, I could take no more,
Surely this would wake me up?
Save me from this hell close up…

9 years ago, I pulled my bedcovers tight,
The curtain surrounded me, I prayed in fright,
A patient rampaged through the night,
I’m sure she thought in her head, that she was alright…

9 years ago, I escaped from hell,
I really thought I’d been locked in a cell,
A voluntary prison to keep me from harm,
At one low point, I’d set off the alarm…

9 years ago I convinced a panel,
That I could control the voices, switch over the channel,
They let me home to see my baby,
Unable to breastfeed, not a chance, not a maybe.

9 years ago, a decision I made,
No longer was I going to live life afraid.
I grew strong, I grew brave, I took daily action,
Came off of my meds, despite their reaction.

9 years ago I lost my twin sister,
A surreal experience, how I wept, how I missed her,
My body just went through the motions,
All around me was grief, I was full of trapped emotions.

9 years ago I turned to the light,
Faced my fears daily with a positive might,
Looked after myself, made sure that I slept,
Ate regularly, exercised, my mind I just kept…

9 years ago, I came back from the brink,
I’m a fighter, a survivor, I was saved, didn’t sink.
My faith grew more with each passing day,
My husband, my rock, by my side did he stay.

9 years ago I beat mental illness,
Today, I’m more calm, mindful in stillness,
Meditation I practice, self love and awareness,
Never look back in anger, but was I treated in fairness?

Fast forward 9 years and what can I do?
To make a difference, to a lot, not a few?
I’m lucky, I’m grateful, for I have survived,
For others, a different ending, women have died…

Today, I stand tall to combat the stigma,
Postpartum illness is still an enigma,
If you feel strongly, then just share my post,
Amen to the father, the son, and the Holy Ghost.
Love x light x inspiration x

 

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Rachel to run the Royal Parks Half!

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APP say a BIG Thank You to Rachel who will be running in this year's Royal Parks Half Marathon, taking place on Sunday 14th October, in aid of APP! This stunning central London Half Marathon, takes in some of 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.

Rachel is running in aid of APP after suffering with PP in 2017, she says:

"On Christmas Day 2016 we welcomed our little boy into the world. We were over the moon and brought him home on Boxing Day feeling daunted, scared but so so proud!

We didn’t know that just two days later I would be readmitted to hospital with a condition none of us had ever heard of before, Postpartum Psychosis....After a short stay in a mother and baby unit 50 miles from home I was discharged and have received support from a brilliant charity Action on Postpartum Psychosis.

I’m running the royal parks half marathon to raise much needed funds for APP so that no women or families have to face this misunderstood condition alone. The charity has supported my family and me hugely throughout my recovery. And quite honestly I wouldn’t be where I am without them."

Please visit Rachel's Just Giving page here and donate what you can - thank you.

Thanks so much to Rachel for taking on this challenge in aid of APP, and we wish you all the very best with your training!

Megan is jumping out of a plane for APP!

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Three cheers for Megan who has bravely volunteered to jump out of a plane in aid of APP on Saturday 30th June!

Megan says: 
"I will be skydiving in Bridlington for Action on Postpartum Psychosis (APP) on Saturday the 2nd of June. I have chosen this date to mark my nephew, Ethan’s, 1st birthday and a year since my sister suffered with Postpartum Psychosis (PP). PP occurs around the time of birth and involves the sufferer experiencing serious hallucinations and/or delusions. Hayley was sectioned under the mental health act following the birth of Ethan due to the severity of this illness. She was lucky enough to be given a place in a Mother and Baby Unit in Leeds where she could be looked after by a psychiatric team whilst remaining with Ethan. They were accompanied 24 hours a day to ensure their safety and it is charities like APP that help campaign for these wonderful services. Hayley has since benefited from other APP services such as the use of other women’s stories to help process what has happened to her. Without this support Hayley wouldn’t have made the progress she has made in such a short space of time. As a family also recovering from this traumatic time we have benefited from the resources APP provide.

The purpose of this skydive is not only to raise money for this important charity but to raise awareness of this serious illness. With more recognition of PP more women may be prevented from suffering and given the care they need earlier on.

We appreciate any donation you can make and can’t thank you enough for your support. Surely it’s at least worth a donation just to see me throw myself out of a plane?

Thank you!
Megan, Hayley and Family x"

Please visit Megan's Just Giving page here and donate what you can.

A very BIG THANK YOU to Megan for jump-starting our Big APP Skydiving year - we'll be busy cheering her on from the ground! 

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APP Peer Support Volunteer training in Bristol!

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On 3rd February 2018, APP held another successful Peer Support Volunteer training day at the fantastic Bluebell Place in Bristol. 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.

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The BIG APP SKYDIVE 2018!

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Would you like to enjoy the exhilarating and unforgettable feeling of a skydive - flying through the clouds from over 10,000 ft at up to 120 mph?

If you are looking for the experience of a lifetime, we would be delighted if you would like to take on a sponsored freefall parachute jump in aid of APP, and if you raise enough sponsorship, you can jump for free!

We have teamed up with Skyline, a professional charity fundraising events organiser, to offer APP’s supporters this amazing experience of flying through the clouds! 

You will be strapped to your qualified British Parachute Association tandem instructor who does all the hard work for you, leaving you to enjoy the invigorating feeling of freefalling before gliding to the ground!  (Or, if you're more experienced you can try Static Line where you will complete a solo jump from 3,000ft, with your parachute pulled automatically as you leave the aircraft, or the Accelerated Free Fall, with the thrill of skydiving solo from up to 12,000 ft.)

As a small charity, your energy is vital to ensure we can keep operating our information and peer support services. Your help and fundraising will make a big difference to our small charity. Don’t forget, if you raise the minimum amount of sponsorship you will get to jump for free!

You can jump from any one of over twenty BPA approved airfields across the UK and no experience is necessary as you will be given training before your jump.

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This incredible challenge will give you the biggest adrenaline rush you could ever imagine and you soar through the air knowing that you have helped raise invaluable funds for APP.

Watch Skyline's exhilarating video of a Tandem Jump to get a feel for what it might be like for you, below:

So what are you waiting for?!

Book now to experience the challenge of a lifetime!

Or, contact us  to find out more!

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