Another Outing & Feeling Torn...

Out for Sunday dinner with sister & cousins

Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.

The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.

'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.

On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!

Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.

During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.

Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.



After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'

Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.

I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.


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

To test or not to test for genetic abnormalities?

Chat with another parent whose child has the micro-deletion
Hi ‎S - Very brave of you to say this. I've been feeling really low about Chrissy's situation recently. The flawed bureaucratic processes we've continually come up against have brought me to my knees & it's hard to see any light on that front. Like Clementine, Chrissy's life has been severely affected & she has suffered far too much, & it's like ripples on a pond affecting the wider family. Her amazing personality means that we feel blessed to have her, but what's life like for Chrissy? I'm terrified too of what will happen to her if she outlives us but equally terrified of losing her too soon because of her condition. Then if you look at the wider picture, & all the unaffected or very mildly affected parents/grandparents etc you see that this deletion is just part of life's genetic lottery. None of us come into the world with guarantees.

Dear MP.....

Please read Mencap and the Challenging Behaviour Foundation’s ‘Out of sight’ campaign report which tells the stories of James, Joe, Emmanuel, Victoria & my daughter, Chrissy http://www.mencap.org.uk/sites/default/files/documents/Out%20of%20sight%20report%20Easy%20read.pdf In the report, you hear from their families, about the terrible neglect and abuse their loved ones have experienced. Please email your MP today and ask them to take action to make sure this never happens again http://bit.ly/NVtsBS

One of the worst cases in the report is that of 38-year-old James, who has spent five years at an assessment and treatment unit located 150 miles from his home. In this time, James has experienced sexual and physical abuse by other patients, numerous unexplained injuries, neglect by staff and has had multiple medical complaints left untreated. James’ parents have been desperately fighting to have their son moved to a service nearer to home.

Since the BBC’s ‘Panorama’ exposed abuse at the Winterbourne View assessment and treatment centre, last year, Mencap and the Challenging Behaviour Foundation have received 260 reports from families about abuse and neglect of people with a learning disability in similar services.

There are currently hundreds of people with a learning disability in assessment and treatment units like Winterbourne View, and other similar services. Many of these are located hundreds of miles from people’s homes, where they are at particular risk of neglect and abuse. We're lucky, we fought tooth and nail to get Chrissy placed in an assessment and treatment unit only a 30 minute drive from our home, and she visits us every weekend - but until recently service fell far short of expectations. Worse still, commissioners failed to follow up on her progress, ignored communications and did not attend care planning meetings. I've had to take numerous steps force them to take responsibility for meeting Chrissy's complex healthcare needs. A significant contributing factor is a four-year Ordinary Residence funding dispute between the NHS and local authority.

While these units were developed to provide short-stay, specialist treatment for people with a learning disability who have experienced a crisis, in reality, over half (53%) of patients remain for two years or more and nearly a third (31%) stay for more than five years. Assessment and treatment units have been described as “dumping grounds” by learning disability experts. Chrissy has been at her unit for over two-and-a-half years and is nearing the end of her treatment but, despite her complex needs and the Challenging Behaviour Foundation's assertion that it can take 12-18 months to find places in the community for someone like Chrissy, commissioners refuse to start planning her discharge and have repeatedly broken promises. I have had to take on care management responsibility and drive every aspect of Chrissy's care while the NHS commissioners who pay for her treatment turned their backs on her.

Since a change in leadership the hospital are finally doing everything I wanted them to do for Chrissy in the first place, so I DO see the need for assessment and treatment units in crisis situations like the one Chrissy was in but they need to be as Mencap and the Challenging Behaviour Foundation describe, and subject to closer scrutiny by outside services, especially responsible commissioners. The pathways to transition patients into these units need to be far better managed too. After two traumatic residential placement breakdowns, we had to force the NHS trust's hand to get Chrissy into a local unit - they wanted to send her 65 miles away to a unit near Gatwick that had a bed-blocking problem and could give no definite admission dates. They are currently funding Chrissy's place at the assessment and treatment unit on a 'without prejudice' basis.

The government must urgently address these systemic failings in the care of people with a learning disability. Please contact the Secretary of State for Health and urge him to ensure that the government’s final report on Winterbourne View commits to a strong action plan to close large, institutional-style services and develop appropriate local assessment & treatment services for people with a learning disability. What has happened to the people at Winterbourne View, and those in the ‘Out of sight’ report, must not happen to anyone else.

Please also attend an important debate secured by Tom Clarke MP on this issue. It is an end of day adjournment debate on the abuse of people with a learning disability, on Monday 3 September.

Yours sincerely.....




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

Quality of Life and Medication

Enjoying family time in our back garden

Over the past few years medications that haven't suited Chrissy have caused her untold suffering. From general anaesthetics and pre-meds for ops in early childhood to antipsychotics, reactions have ranged from screaming & thrashing about as if acid is burning her insides to status epilepticus and a life-threatening blood disorder. I've no idea why Chrissy is so sensitive & has such strange reactions but trying her on new medications scares me witless. It's unbearable to see the torment she goes through but a relief that while she's in hospital they can respond quickly to remove medications that have caused bad reactions. Out in community-based settings, this did not happen.

When a supplementary antiepileptic caused mayhem in Chrissy's brain earlier this year, I wondered if she would ever be stable again. It was supposed to do the opposite - it's prescribed for anxiety as well as seizure control. So when her doctors started suggesting other adjunctive antiepileptics my hackles went up. Chrissy has been on Epilim alone since the end of April, and has got her sparkle back. She has been interested in her surroundings, engaging in meaningful conversations, able to focus on activities, and a delight to be around. Introducing a new drug would jeopardise her newfound eqilibrium. Was it absolutely necessary?

Chrissy's seizure freqency has increased slightly, and they're mainly complex partials that become generalised while she's in bed at night. They're all self-limiting and last for only a minute or two.

My questions were: Are they likely to damage her brain? What's their impact on her overall quality of life?

We saw the neurologist on Thursday, No, the type of seizures that Chrissy has do not cause brain damage. Hospital staff and I felt that Chrissy's life is briefly interrupted by seizures but not ruled by them. She will sleep for a couple of hours after more major seizures, then will wake up as if nothing has happened. One of Chrissy's nurses asked about the risk of SUDEP (sudden unexplained death in epilepsy) ttp://www.epilepsysociety.org.uk/NewGetInvolved/Awarenessraising/EpilepsyReview/SUDEPresearch. Her neurologist said that no one knows exactly why SUDEP happens but it's more common among people with poorly controlled epilepsy, who have seizures at night during sleep and whose seizures start from a focus then become generalised. So Chrissy does have several risk factors but close monitoring is key. She is in the next bedroom to ours at home and we're attuned to the slightest change in the sound of her breathing, and hospital staff check her every 15 minutes. She also has a baby monitor. I try not to think about SUDEP - everything that can be done is being done and what's more important for Chrissy - optimising seizure control with all it entails or quality of life?

Chrissy came along to the appointment and it was clear to us all that she was on top form. The highlight of the day came as we went to leave the hospital. She did a body-swerve towards WH Smiths, made a bee-line for the sweets then homed in on the Maltesers. There she spent ages bent double over the shelves with her bum in the air trying to work out the difference between two packs - one was slightly bigger than the other & she wasn't going anywhere until she'd made the right choice! The rapture on her face as she tucked the larger of the two packs inside her lunchbox was a joy to see. I felt elated all day as I reflected on how far she'd come.

'Don't count your chickens' Ian warned me later....

I know there are likely to be more blips but for now I'm enjoying the feeling that we've got Chrissy back. If the risks posed by her seizures increase I will, of course, be open-minded about the need for adjunctive treatment but we've all agreed for now that watchful waiting is the best approach.



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