Post-natal Psychosis, Take a Break

This is one of the most heartbreaking stories I've ever written.

All 26-year old Karen had ever wanted was to be a mum but after her second child came along, she locked herself in her bathroom and stabbed herself in the chest. She died from a blood clot resulting from the wound 3 days later.

Her mum, Carol, tells the chilling story of how the tragedy unfolded, and how the family are still trying to come to terms with Karen's cruel and untimely death. As you can see from the photo, she has left behind two beautiful little girls.

Post-natal psychosis is an extreme psychiatric illness affecting as many as one of 500 new mums. It's thought to be linked to sudden hormone changes and lack of sleep but no one really knows for sure. Symptoms include paranoia, delusions, hallucinations and severe mood swings - and it can come on suddenly. A psychiatrist who specialises in the illness says that she has seen women go from acting normally to totally psychotic in a matter of hours.

For help & advice contact the Pre & Post Natal Depression Advice and Support helpline on 0843 2829 401

Barriers to Successful Care in the Community

Chrissy reading her Person-centred Plan
Since Winterbourne the Government has set up an action plan called a ‘'Joint Improvement Programme' to support local areas to provide ‘swift and sustainable action to ensure that services are personalised, safe and local.’ They want to move people out of assessment and treatment units and back into the community but our experiences demonstrate that the infrastructure just isn’t there. These individuals often have very complex needs and there are too many barriers in place that limit their chances of ending up in successful community placements.

Last Wednesday I was grateful for the opportunity to tell Chris Bull MP, who is the head of the team implementing the Joint Improvement Programme, about the barriers that Chrissy is facing.

Firstly, the team need to examine barriers that cause community-based placements to break down in the first place.

Ordinary Residence and Continuing Healthcare disputes: When we moved to Hampshire in 2003, Chrissy’s care management responsibility wasn't transferred correctly, and her care was still managed by a council based 80 miles away. She has never had a local social worker. The arguments between this council and our local PCT led to gaps in case management and poor continuity of care. The problems escalated when Chrissy’s condition deteriorated, which led to an emergency move to a residential home in a different county. I believe that the funding dispute played a key part in Chrissy’s admission onto the unit in the first place because the PCT did not accept that she had a primary health need and she was denied appropriate treatment. For example, until Chrissy entered the unit our attempts to get a second opinion on her medication were continually blocked.

Lack of a cohesive multi-displinary approach and inadequate medical support: Whenever Chrissy went through crisis periods in the community, opinion was divided between her family, staff and the local learning disability team as everyone struggled to cope. Chrissy is described as having challenging behaviours and highly complex needs but this only scratches the surface. For example, her epilepsy, extreme behavioural reactions to medication and history of life-threatening blood count problems made managing even small medication changes in the community very tricky. However, there was little infrastructure to support care staff, who frequently reported that they felt out of their depth. In the last community where Chrissy lived there was no acute service from the local learning disability team, which meant that when she was going through a crisis period, she wasn’t able to access an emergency appointment with her psychiatrist. In our experience learning disability teams need to use a more person-centred approach and listen to families more. Parents usually know their child’s medical history better than anyone. It hasn’t helped our situation that medical records are missing from Chrissy's two most crucial hospital stays.

Frequent home moves: Since we moved to Hampshire 10 years ago, Chrissy has moved home four times. Inadequate infrastructure in the community resulted in her eviction from a care home in 2008. Most residential care homes are privately run, which makes already vulnerable people even more vulnerable. Who would have thought that people with learning disabilities in privately-run care homes have fewer rights than the average tenant? We discovered this cruel injustice in 2009 when Chrissy was given 28 days’ notice after an incident that had resulted from a clear failure on the part of others to provide for her at her level of need and risk. Chrissy had no rights and was offered no representation at the POVA meetings held regarding the incident.

Cost and complexity of accessing local housing: Cost is the biggest barrier to moving Chrissy into a successful community placement and this is probably the case with many other vulnerable adults. Yet it would be far cheaper to get it right in the first place than to keep someone for more than three years in an assessment and treatment unit. The government has long been committed to the idea of care in the community – but whose community? If the individual’s family lives in an area where housing is more costly to rent or buy than average – tough! Last year the commissioners said that they would set up the ‘bespoke’ service that Chrissy needs and would be looking to engage with a Registered Social Landlord to buy a property off the open market. They then advised us that Housing Benefit doesn’t cover the cost of rents in our locality. Also Housing Benefit is calculated on a per person basis and Chrissy needs a sleep-in carer, which means two bedrooms. She is disadvantaged because she will have to meet the rent payment on her own and Housing Benefit won’t cover it.

We looked at buying Chrissy a house ourselves and renting it to her but there are new, confusing barriers in place there too. Shared ownership schemes were another option we explored but there was nothing available in our locality. All the different housing options are incredibly complicated and it’s another field, along with understanding how Decision Support Tools and Ordinary Residence work, that family carers have to become experts in as we are left to do most of the research. A friend looked at me in disbelief when I told her that doing all this for Chrissy is like having another job but that's how it is, especially during transitions like this move from the unit. I need an expert to guide me through the different options as it’s such a maze - and the rules keep changing! It’s unfortunate timing for us – the recent cuts and policy changes seem to have blocked all our avenues for accessing appropriate housing in the community.

We’ve explored private sector lease management through Registered Social Landlords that only sublet to disabled tenants but the rents they charge are way too high to be covered by Housing Benefit. Chrissy’s claim should be ‘exempt’ or excluded from the ordinary rules that cap Housing Benefit but the calculations that we’ve been given still fall short and the commissioners have told us that the only way we could access Registered Social Landlords is through renting from the council as it would be more affordable.

Unfortunately, we've yet to find any local social housing that will meet Chrissy’s complex needs. Most of the two-bed properties that she’s eligible for are flats in confined areas with either no garden or communal gardens. Chrissy can disrobe, thrash about and make lots of noise for prolonged periods when she's distressed. These challenging behaviours would be seen as a nuisance in a confined or overlooked area and could cause her, at best to be shunned, at worst, evicted - her previous eviction was due to the impact of her behaviour on other people she lived with.

The commissioners argue that we'd have more options if we were to consider a wider area and that Chrissy doesn’t need to live locally because the Campus Project (the move from long-stay hospitals over 20 years ago) ‘moved people with a variety of highly complex needs and they have successfully built community links.’ Really? That's quite a generalising claim and hard to prove. Given Chrissy’s challenging behaviour, limited abilities and autism, she would struggle to build community relationships and take part in local social activities in an unfamiliar area, even with the best of carers. There should always be compelling reasons for sending any individual with a learning disability out of area, and Ian and I believe that, due to her condition, if a single service supported living setup is going to work, Chrissy will need to be as close as possible to family support. As detailed in her Person-centred Plan, her family relationships are important to her, and are the only enduring ones she has. She lives for her visits home, which could be built in to her everyday life if she lived locally. We would also be on hand to provide back-up in emergencies.

Chrissy has been staying at her family home once a week for the past 10 years since we moved to Hampshire but when a rare opportunity for her to move into local social housing came up, she was denied it. If, as we'd requested, the discharge planning process had started earlier she may have been moved to a higher priority banding in time but in fact it's only happened in the last couple of weeks. We were also told by a Housing Officer that Chrissy wasn’t eligible because she hadn’t lived in the locality full-time, which seems unjust considering that, given the ability to express her preferences, Chrissy would have chosen to live locally from the start. Don't get me wrong, I appreciate that she's 28 and needs as much independence as possible for someone with her level of functioning, but the community near her family home is the only one, other than the unit, that she knows. People recognise her and stop to chat when I take her to the small local shop. Large supermarkets with their fluorescent lighting, crowds and vast array of goods, such as those in urban areas, flood Chrissy's senses and can cause her to erupt into prolonged screaming, self-injurious outbursts.

Good GP support is also crucial. When Chrissy was a child we lived in an urban area and our local surgery was large with a high turnover of staff. Chrissy’s GP didn’t know who she was when we called him out on an emergency. Here, our local GP knows our family and is aware of Chrissy's rare condition.

Moving Chrissy to an unfamiliar urban community is likely to cause her immense distress and result in a deterioration in her behaviour. Any move is going to be stressful for her as we’ve seen in the past. Chrissy’s condition makes her react in extreme ways to any small changes in her medication or her environment. An inappropriate move could put the whole supported living setup in jeopardy and she could end up back on the unit.

We don’t want Chrissy to be institutionalised but, frankly, she would be safer and happier staying in the small supportive community at the hospital where people know her and like her than living in the midst of a large, unfamiliar environment with neighbours that could view her as a nuisance.




I support Unique http://www.rarechromo.co.uk/html/home.asp and I am a SWAN UK (Syndromes without a Name) blogger

Living with a Rare Chromosome Disorder: Support from Other Parents

Team GB (Genetic Blip) members in Hampshire

I feel very lucky to have met some lovely people through Unique, the rare chromosome disorder support group. We meet at each other's houses about once a month. Monday's meetup at Laura's was the first time Chrissy had joined us, and it was a resounding success!

We're quite a diverse bunch. Our ages range from 27 to 52 and our affected children's from 3 to 28. We have a gran who comes along when she can & of course my child is now an adult. Although I used to attend a support group for parents of children with learning disabilities when Chrissy was little, it is a great comfort now to feel a common bond with other parents who know what it's like to have a child with a rare and complex medical condition.

We now have four different rare chromosome disorders among the children in our group.

Chrissy and Faith, aged 6 1/2, have a 1q21.1 microdeletion - http://www.rarechromo.org/information/Chromosome%20%201/1q21.1%20Microdeletions%20FTNP.pdf Last October Unique reported only 64 confirmed cases - so quite remarkable that Faith's mum Jo and her family only live about 20 miles from us.

Sue's 4 1/2-year old daughter, Celyn, has a 6q 26 -6q27 deletion http://www.rarechromo.org/information/Chromosome%20%206/6q%20deletions%20from%206q26%20and%206q27%20FTNW.pdf

Laura's daughter, Katey, aged 3 1/2, has a 15q11.2 microdeletion http://www.rarechromo.org/information/Chromosome%2015/15q11%202%20microdeletions%20FTNW.pdf

Mandy's 4-year old son, Harry, has XXYY Syndrome http://xxyysyndrome.org/english.php

Despite the different chromosomes that are affected, our children share striking similarities, such as feeding difficulties as babies, low muscle tone, developmental delays and behavioural problems, but there may also be wide variations between people with the same chromosomal make-up. For example Faith doesn't have learning disabilities like Chrissy but she shares some of the behavioural traits and health problems, such as repeated ear infections. So although our daughters share some of the traits that tend to occur more frequently in people with 1q21.1 microdeletion, they are also shaped by their own unique mixture of genes and environment. No one knows why certain chromosomal rearrangements cause medical problems in some people but leave other people healthy. Even the features of Down's Syndrome, the most common genetic cause of learning disabilities, vary widely. Current research proposes that there is no syndromic pattern present in 1q21.1 microdeletion but parents I've met online report many common characteristics that aren't documented in medical literature.

It's only over the past 20 years that major advances in technology have demonstrated the importance of genetics, particularly where there is an extra piece of DNA (duplication) or if a bit is missing (deletion). Some chromosome disorders are incompatible with life and will cause the death of the embryo before birth, others can result in effects, such as learning disabilities or short stature that only become obvious as the child develops. Chrissy's deletion is de novo (brand-new); nothing was found in mine or her dad's DNA sample so our children are unlikely to have a child like Chrissy. Some children inherit the chromosome anomaly from a parent who's a 'silent carrier.' The parent may only discover that they have a chromosome anomaly when they undergo genetic tests to try to determine a cause for unexplained health or developmental problems in their child.

Although the completion of the Human Genome Project was celebrated in April 2003, the exact number of genes encoded in the genome and their function is still a work in progress. Our children's genetic blips place them in the forefront of groundbreaking research into solving one of life's greatest mysteries - what makes us human?



I support Unique http://www.rarechromo.co.uk/html/home.asp and I am a SWAN UK (Syndromes without a Name) blogger

Happy Times!

Ian was away on business so it was just Chrissy & I this weekend. From the moment I picked her up she was jolly and chatty. Throughout her visit there were fewer shouting episodes and, unlike last week, no swearing.

Overall, Chrissy was more compliant and able to focus on the task in hand. This morning I let her take things at her own pace. She chose to play on her laptop before doing anything else. She then let me know when she was ready for her bath and, after I got her dressed, I left her to eat her breakfast on her own with no distractions. Her obsession with food vanished when she came off antipsychotics - but surprisingly she hasn't lost weight. Hopefully we will be able to address her diet when she is living in the community and no longer eating communally.

I was even able to have a shower while Chrissy played quietly downstairs on her laptop. Unheard of! I sneaked downstairs to check that she wasn't stalking one of our cats and was reassured to see that she was sitting contentedly at the kitchen table selecting a DVD. This ability to entertain herself is new - usually, if she is left alone in a room, she seeks us out and shadows us so closely that we get stuck in doorways and fall over her whenever we turn round. She has taken up old hobbies like drawing and writing again.

'My Dinner' by Chrissy

On our morning stroll to the village shop Chrissy clutched her banana-&-chocolate-mousse-in-a-bag and posted my letters then stopped for chats with a lady that used to work behind the till and my neighbour. It reinforced my view that she should move into a familiar community where she will be among people that know her.


As I drove her back to the assessment & treatment unit she kept smiling at me and stroking my shoulder. These genuine shows of affection have been increasing over the past few months. She often spontaneously kisses Ian and I, and says: 'I love you sometimes.'

Only downside is that she's had two nocturnal seizures this week but one or two a week is fine and may account for her calmer behaviour.

Tomorrow Chrissy starts on vitamin B6 (pyridoxine), which may curtail some of the negative behavioural effects that we've seen since she's been on Keppra. I was pleased that her psychiatrist took it upon himself to do his own research & agree to a trial of vitamin B6. Chrissy's neurologist hadn't been convinced.

So this weekend Chrissy's behaviour, ability to engage, alertness, focus etc. were as good as they were just before she went on Keppra but was having too many seizures. Have we finally achieved the successful balance we've been seeking for so long?

Only time will tell....




I am a SWAN UK (Syndromes without a Name) blogger

Epilepsy & Behaviour (2)

I first posted on the reciprocal relationship between epilepsy & behaviour a year ago http://jgregorysharingsstories.blogspot.co.uk/2012/01/epilepsy-behaviour.html This post is on the same topic with a different drug.

At the end of last year I told how we'd got Chrissy back at last. Unfortunately her seizures took over and, just before Christmas, Keppra was introduced as an adjunctive antiepileptic to Epilim. Since then perfect seizure control has been achieved but her behaviour has become increasingly bizarre. Since Keppra's most serious adverse effects are behavioural, we need to closely monitor its benefit-risk ratio for Chrissy.

Ten days ago I agreed with Chrissy's doctors that we should halve the dose to try to achieve a better seizure/behaviour balance. Last week I thought things had levelled out when her ward manager said that she seemed much more herself. Trouble is he'd only called in to see her in passing, & appears to have reported a snapshot view. Other ward staff have reported similar behaviours to those we've seen - shouting, swearing,& inability to focus. Yesterday her nurse told me that she was too distracted to take her morning meds - although they somehow got her to take them eventually.

At the weekend we, too, were unable to get Chrissy to focus on the task in hand. We were dismayed to see how bad things had got. She had periods of being herself then suddenly exploding into staccato roars & shrieks: 'Mummy! Shut up! Bastard shit! Fucking bitch! I spit at you!' It's like someone with Tourette's Syndrome on overdrive. She either stalked us as if she was trying to goad us or took herself off to a chair on the landing, still shouting. These shouting episodes can last for an hour or more, and even when she settles she's still very restless and whingey.

On Saturday morning I had a struggle to get her to focus long enough to climb into the bath, take her tablets or eat her breakfast. She kept up a constant stream-of-consciousness commentary as if she was on speed. She eventually exhausted herself, & my patience. At one point she said: 'Chrissy's poorly & screaming.' (In fact we haven't seen any screaming, stripping behaviours.) 'Poor Chrissy,' I said, & signed: 'Are you cross or sad?' As she answered & signed 'sad' my heart melted & my irritation with her evaporated.

Eventually she sat cross-legged on her bed & said: 'Who's that? What's that name?' I followed her gaze to the foot of her bed. Did the pattern in the rails look like a face to her? 'There's no one here,' I said. 'Is it a witch?' she asked. (A new word she uses frequently but not always appropriately!) She leaned forward & pressed a gold circle in the pattern that looked like a button. 'It doesn't work,' she observed. Then she started shaking the curved rails at the end of her bed as if she expected to bring them to life!

Since all the medication changes Chrissy has been far more aware of everything around her but this was very odd. She then asked me to 'do' her covers, burrowed into them & said 'goodnight mummy.' I left the room & when I came back 10 minutes later she was fast asleep. It's unheard of for Chrissy to get into bed fully clothed without asking for her curtains to be closed, whatever the time of day.

All these changes in Chrissy's behaviour & normal routines make me feel very uneasy. It's as if her personality is being sabotaged.

I had first discussed the timing of the dose with her ward manager 11 days ago. We'd agreed that it made sense for the dose to be given in the evening, as most of her seizures are nocturnal. However, for some reason Chrissy's doctor had prescribed it in the morning. I am still waiting for him to review the prescription. I had also passed a message on to Chrissy's doctor to ask him to consider adding vitamin B6 as studies have shown vitamin B6 deficiency may occur with some patients on Keppra, and that its addition can curtail some of the adverse psychiatric effects. I'm still waiting for answers & hoping that this is a temporary setback that we can find a way through - otherwise we're on the roller-coaster ride of yet another drug trial.



I am a SWAN UK (Syndromes without a Name) blogger

Mosaic Down's Syndrome - My Latest Real Life Story

I first wrote about this rare form of Down's Syndrome for that's life! several years ago. Then in 2011 I heard about Claire's fascinating story, and wrote it up for Essentials Mag. Then it went in the Daily Mirror and now it's had a 3rd showing - this time in Bella Magazine!


Few people have heard of the condition, where someone has two or more types of different cells in their genetic make-up, It's often missed in standard genetic tests. Like mosaic patterns formed from many small pieces, Claire had two or more types of different cells in her genetic make-up. Around 13% of her cells had the extra chromosome 21 found in the more common form of Down's Syndrome, & the rest are normal.

When Claire’s mum, Beverley, gave birth to her, she thought Claire was a normal baby girl but over the years she became increasingly difficult to manage. Despite having a son a year younger than Claire who was fine, Beverley blamed herself & wondered where she was going wrong. Eventually, just before Claire’s 11th birthday, Beverley pushed for medical tests. Claire’s doctor organised blood tests to check her DNA and she was found to have Mosaic Down’s Syndrome, which is diagnosed in around 2% of people with Down's Syndrome.

Most mums discover their babies have Down’s Syndrome during pregnancy or soon after birth, & the news can be devastating. All Beverley felt was relief that it wasn’t her fault & Claire wasn’t a naughty child. Claire was told about her condition when she was diagnosed &, gradually, over time she came to understand what it was. Now she wears her Mosaic Down's Syndrome like a crown. She raises awareness about it and supports parents on social networking sites. She has even made short films about it.

Claire amazes Beverley with her independence and achievements. She has a 2:1 honours degree in media & lives alone in a small flat near her parents. She has even flown to America to give talks on Mosaic Down's Syndrome.

Beverley is extremely proud of her inspiring daughter and wonders how many other people are living with Mosaic Down's Syndrome who haven’t been diagnosed.












I am a SWAN UK (Syndromes without a Name) blogger

How Chrissy became my Launchpad into Journalism

I'm not a great one for New Year's resolutions as I've never managed to stick to any but this time of year often brings us fresh perspectives. As you can see from this blog, I've been caught up with my struggles to get Chrissy better and to get her the care she needs - so much so that, recently, I've let other things in my life slip, like my journalism career.

I've had over 1000 articles published in Glamour, Woman, Woman's Own, Best, Reveal, Take A Break, Pick Me Up, Sun, Mirror and Daily Mail, among others, but in my mid-thirties when I started working as a freelance journalist I was untrained and inexperienced.

I had always enjoyed writing for pleasure but never dreamed I could write and get paid for it. In fact, like many mums of young children, I struggled to get paid for any kind of work! It's even tougher when your child has significant difficulties, as it's hard to get childcare, there are more medical emergencies and hospital appointments, and of course the dreaded school holidays! I took on various jobs from party-plan to medical secretarial work but never earned enough to make a significant contribution to the household budget.

Back then of course, there was no internet and I was always on the lookout for stories in newspapers and magazines about children with disabilities but everything I found was about better known disabilities such as Down's Syndrome or autism. I never read anything about a child like Chrissy, who then, didn't have a diagnosis - not even autism. Her Geneticist at Great Ormond Street Hospital told me that Chrissy wasn't unusual - they were unable to pinpoint a cause for problems in 30-40% of their patients. 'There has to be an article here,' I thought.

I bought a book called 'The Writers & Artists Yearbook,' to get contact details for all the magazine publishers, and sent around a synopsis about what it was like not to have a diagnosis or medical label for my child. I didn't even have a fax initially - I posted it out to commissioning editors on all the leading women's magazines.

Two magazines came back - Woman's Realm, which folded in 2001, and Woman's Weekly. I went with Woman's Weekly because they were the first to offer me a commission. I was honest with them about my inexperience and they kindly gave me a detailed brief to follow about how they wanted the piece written.

My first ever published story (Apologies for the poor copy. It's the only one I have!)

Disability Now also published our story. It's a shame that they will no longer consider pieces written by anyone other than the person who has the disability. It means that people like Chrissy, are given no voice in their publication.

The two magazines had a similar readership so Woman's Realm couldn't run it too but they asked if I had any similar stories. I did! I knew lots of women with great stories - some of them mums, some single - all happy to make a bit of extra money and see their story in print. My friend's story about being at loggerheads with her husband over whether to take their disabled son on a family holiday was my next published piece. I was also invited to an 'Ideas Meeting' at Woman's Realm. What an honour! I guarantee it wouldn't happen today - much more difficult to break into the industry. The commissioning ed took me under her wing as she was keen to plunder my contacts. In return she helped me to hone my feature-writing skills without stealing my stories or my bylines! I asked her if she could recommend any correspondence courses and she told me about one that she'd heard good reviews about - unfortunately no longer operating. While I was learning how to build a freelance journalism business, I was still getting articles published and getting paid for them.

I branched out into training, and wrote and delivered trainings on managing challenging behaviour using communication strategies. I also trained and advised aspiring young journalists at an FE college and worked as an external verifier for journalism courses at colleges and universities. Meanwhile, I did a stint teaching adults with learning disabilities at an FE college while gaining a Further Adult Education Teaching Certificate.

My career success gave me the boost I needed to approach publishers about my book idea. My self-help book 'Bringing Up a Challenging Child at Home: When Love is Not Enough' http://www.jkp.com/catalogue/book/9781853028748 was published by Jessica Kingsley, London in 2000. Ten years later I wrote a chapter for a book published by the New England Journal of Medicine, entitled the ‘Genetics of Mental Retardation,’(Karger).

Chrissy's story continues with this blog. Did I really start it over two years ago?! It seems like only yesterday when I was grappling with HTML and the like!

Through this blog I've been offered some great stories but I also want to let you know that, although my own story is about raising a child with a learning disability, I would love to hear from you about stories on any subject!

To give you an idea, here are some topics I've written about and am looking for stories on:

Seasonal stories - currently those with a Mother's Day or spring/easter hook
Health stories - an unusual take on a common illness works well.
Funny, quirky, heartwarming & shocking real-life stories.
Age gap relationships.
Crime.
Weight loss due to shocking photo.
Cheating saved my relationship.
Botched cosmetic surgery.
Strong fertility story.
Someone who found out partner was leading a double life.
Woman whose wedding went wrong, was engaged many times, or suffered any sort of betrayal.
Mum whose child has problems with alcohol or is very overweight.
Strong relationship or true-life stories that you can imagine reading in a magazine.

Alternatively visit my Facebook page https://www.facebook.com/Sharingstories to connect with me, see examples of my stories and get more info.

Look forward to hearing from you soon!


I am a SWAN UK (Syndromes without a Name) blogger